ALS Guidebook for Newly Diagnosed Patients by absences

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									       LIVING WITH ALS (LOU
         GEHRIG’S DISEASE)
    A GUIDEBOOK FOR
  RECENTLY DIAGNOSED
 PERSONS WITH ALS, THEIR
      FAMILIES AND
   SIGNIFICANT OTHERS

 (Or RANDY’S ALS MANUAL)

                        Second edition
Compiled by Randy Roberts in association with members of The Living with ALS
Group
11/2006



Dedicated to all courageous persons with ALS: past, present and future


This guidebook is free of charge. It was designed to be read or downloaded into
your computer from the following web address: http://55jer.com/randysalsmanual.htm

If you don’t have access to the internet, please ask your clinic/program to print a
copy for you.
                PREFACE TO ORIGINAL GUIDEBOOK


Following the shock of my diagnosis of ALS in 4/04, and lacking any preparation, I
felt lost in a nightmare, overwhelmed by negative thoughts. Gradually, by going to
numerous websites and other sources, I learned something about coping but it
wasn’t until February, 2005, when I joined Living with ALS, a message board
group, contributed to by patients and their family members, that it all started to
come together. There, I picked up practical and basic information, all with the
personal contact missing from other sources, and a philosophy of learning to live as
fully as possible with ALS. The supportive and compassionate nature of the posts
helped me through some rough times and, through reading the messages and chat
transcripts, I came to better understand the meaning of courage. Eventually, I
regained my bearings and had, in the process, accumulated a great deal of
information on coping with ALS and related areas. The idea spontaneously arose to
use what I knew to compile a Guidebook/Manual for those who had been recently
diagnosed so that they would have one resource to turn to that offered integrated
information presented in a positive, patient/peer oriented framework, rather than
having to go through the time consuming process of sifting through many sources
on their own. Thus, this Guidebook was born.

The Guidebook could not have come into existence without the help of the Living
with ALS members. Thanks are due to Sherry, Susan, Jeff, David, Erin, Wayne,
Cookie, Ruth Anne, Lee, Lisa, Alper, Don, Edith, Thom, Diane and the whole group,
too numerous to name, from newbie to veteran, who have taught me so much. A
special thanks goes to those who contributed personal stories and articles to the
Guidebook. Danny Dandignac reformatted the Manual and made it look more
professional. Jerry Bergen created my webpage so that the Guidebook could be
read on line and/or downloaded and comments left.

I want to thank my two children, Brett Roberts, M.D. and Heather Roberts for
sharing their knowledge of Microsoft Word. Without their help, I would still be
copying and pasting.

Finally, I wish to thank my wife Pam for her loving care and steadfastness
throughout my ordeal with ALS.


Randy Roberts
Ellicott City, Maryland
January, 2006


                                          2
                    PREFACE TO SECOND EDITION


As a result of the popularity of the first edition and feedback from readers, I
decided to assemble a second edition of the Guidebook/ Manual that presents major
revisions and new material. There are three new chapters on Advocacy, Research
and Major Materials/ Resources available at no charge. The chapter on Entitlements
and Benefits has been completely rewritten. There are significant additions to many
of the original chapters. All the articles were written by PALS or CALS.

I would like to thank members of the Living with ALS Group and others who
contributed posts and articles to the Guidebook. Without the help of Jerry Bergen,
the guidebook would never have appeared on line.

Finally, I would like to thank my wife, Pam, who has been at my side every step of
the way.



Randy Roberts
Ellicott City, Maryland
November, 2006




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                      TABLE OF CONTENTS



CHAPTER 1    Welcome and Introduction                         Page 5

CHAPTER 2    ALS: The Disease                                 Page 6

CHAPTER 3    Coping with ALS                                  Page 7

CHAPTER 3A   Especially for CALS                              Page 39

CHAPTER 4    Major Organizations and Websites                 Page 44

CHAPTER 5    Benefits and Entitlements                        Page 51

CHAPTER 6    Advocacy                                         Page 60

CHAPTER 7    Participating in Clinical Trials                 Page 63

CHAPTER 8    Materials and Resources Available at No Charge   Page 78

CHAPTER 9    Research                                         Page 81

CHAPTER 10   Definitions of Medical and Related Terms and
             Supplemental Information                         Page 89

CHAPTER 11   Reading List                                     Page 92

CHAPTER 12   Closing Comments                                 Page 94




                                       4
                                   CHAPTER 1

                   WELCOME AND INTRODUCTION


   As we jokingly like to say, welcome to the club that nobody wants to join. Right
   now, you are likely to be in a state of shock; your world rocked by a disease that
   you may never even have heard of. Alternatively, you may be in denial, blithely
   going about your business, but with doubts creeping in. Once the shock wears
   off, and it will, you are likely to go through different stages or, more accurately,
   states of mind.

      Denial (this isn't happening to me!)
      Anger (bitterness, short-tempered, why is this happening to Me?)
      Bargaining (I promise I'll be a better person if...)
      Depression (I don't care anymore)
      Acceptance (I'm ready for whatever comes)

Different personality characteristics and circumstances may influence the course of
movement through the stages. For example, I went from a lengthy shock state
right to depression before I reached some degree of acceptance. Few people move
up the states of mind in sequence. Even after acceptance is reached, regressive but
usually temporary moves are to be expected after significant losses in functioning
abilities. By now I have experienced all the states of mind, many, many times. I
can return to the shock stage, too, and then work my way back.

This list of classical stages can be used as a yardstick to measure your own
progress towards acceptance. If you regularly feel bitter, hostile and irritable, then
you might be caught up in Anger. If nothing matters to you anymore and life brings
no enjoyment, then you might be mired in Depression. But these feelings can be
worked through, and periods of acceptance will follow, which will open the window
to adjust better to your vastly changed circumstances. It sucks to have ALS, there
is no other way to say it. It is one crummy disease, but you will see in these pages
how many people go on to live rewarding and meaningful lives, nonetheless. There
is life after ALS. Our emphasis is on Living with ALS, and we hope this Guidebook
will assist you in doing just that.

You are not alone, there are many PALS (Person with ALS) and CALS (Caregiver to
a Person with ALS, usually meant to include spouses, relatives, or significant
others) to help you with their knowledge, support, humor and insights. We have
been through the same kinds of symptoms and feelings as you and are ready to
share our experience. What you read can inspire and give you courage to fight this
illness.


                                           5
This Guidebook is an introduction to our world; pieces written by PALS and CALS as
well as articles offering practical information, culled and integrated from the large
ALS literature. Materials were chosen specifically to be appropriate at this most
vulnerable and traumatic time in your lives. I hope that reading this Guidebook may
help lift the fog of confusion that you may be feeling. May it also provide a more
informed and hopeful approach to ALS than the one you now may hold. Much of
the material in the first section on coping comes from posts on the Living with
ALS message board group. They are unedited but come directly from the heart.
Later sections provide information about the full array of resources that you need to
battle this disease. Most of all, the Guidebook will help you link up with the peer
community of PALS and CALS.

If some of the terms used in this Guidebook are unfamiliar, please go to chapter
where definitions of medical and related terms are provided.

There is much more available to help you move in a positive direction. Many
references have been included for you to obtain more information. This Guidebook
contains too much to take in at one sitting, so come back to it every so often.
Eventually, you may expand to new areas and more comprehensive and in-depth
material.

As mentioned, this Guidebook is designed for people who have internet access,
although a paper edition is available. If you do not yet have a computer, you should
consider getting one as soon as possible. Without the capacity to go on line, a
window to the world of ALS resources and peer support will remain closed and you
will lose the opportunity to spend many hours productively.

Once again, welcome to our family and we hope that this Guidebook is helpful to
you, our newest PALS and CALS members. Please remember that you are not
alone; many others are there with you and for you.



                                   CHAPTER 2

                            ALS: THE DISEASE
                                 By Randy Roberts


Although this guidebook is about coping, a few words about ALS itself might help.
ALS stands for Amyotrophic Lateral Sclerosis and the Amyotrophic is the most
telling part of the disease’s name. ―A‖ stands for no, ―myo‖ for muscle and ―trophic‖
for nourishment. This literal definition indicates that our muscles are lacking
something essential. But ALS is not a muscle disease. Something else has gone
wrong and it is the key to understanding the illness. The nerves or neurons that
                                          6
command the muscles are gradually dying off and that is the real culprit in ALS.
When you want to move a body part, say your arm, an impulse is generated in your
brain and the signal to move is then sent via motor neurons to the spinal cord and
finally out to the muscle. And then the arm moves. In ALS, however, the neurons
begin to die off and the command to move does not reach the muscle as well.
Muscles that receive diminished signals from the neurons will weaken and shrivel
up. Muscles cannot stay strong without continual input from neurons.

Wherever the neuron death begins, it gradually spreads to other motor neurons in
the body, causing further weakness. The rate of this spread is called ―progression‖
and can vary quite a bit between PALS, but tends to stay steady for individual PALS.
The disease affects only motor neurons in the body and only those neurons that
serve muscles over which we have voluntary control, such as limbs, swallowing,
eating, etc. The heart muscle, for example, over which we don’t have voluntary
control, is not affected by ALS. The illness does not affect sensory neurons.

There are 30,000 to 40,000 people in the US with ALS. It can strike as low as the
early 20’s and as late as the 70’s, but onset tends to peak at late middle age.
ALS is not as rare as people think. It is diagnosed with nearly the same frequency
as MS (Multiple Sclerosis), a much more recognized disease. ALS is much more
lethal than MS so our numbers (prevalence) is much lower.

There is yet no effective treatment for ALS (Rilutek, the only medicine for ALS,
increases life span by only a modest amount), nor is there any scientific
understanding of what causes the disease. However, more research is underway
now than ever before.


                                  CHAPTER 3

                            COPING WITH ALS
This section contains stories and articles designed to help PALS and CALS live with
ALS not just endure it or, even worse, feel miserable. Although each has a different
point of view, some recurring themes emerge, as given below:

      Maintain a positive, determined, and optimistic attitude
      View ALS as a disability with major challenges that can be overcome
      Find ways to remain productive and engaged in life
      Manage negative emotions
      Express personal feelings
      Keep involved with significant others and new on line PALS and CALS
      Possess knowledge of the illness and of resources that can help substitute
       for failing capacities
      Feel a sense of spirituality, however defined
      Live within a supportive care giving atmosphere.
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These characteristics define the acceptance stage: an active and persistent effort to
cope with the disease.


  LOU GEHRIG’S FAREWELL ADDRESS, 1939, AFTER BEING DIAGNOSED WITH ALS




Delivered 4 July 1939, New York
Listen to The Iron Horse...

Fans, for the past two weeks you have been reading about the bad break I got. Yet
today I consider myself the luckiest man on the face of this earth.
I have been in ballparks for seventeen years and have never received anything but
kindness and encouragement from you fans. Look at these grand men. Which of
you wouldn’t consider it the highlight of his career just to associate with them for
even one day?

Sure I’m lucky.
Who wouldn’t consider it an honor to have known Jacob Ruppert? Also, the builder
of baseball’s greatest empire, Ed Barrow? To have spent six years with that
wonderful little fellow, Miller Huggins? Then to have spent the next nine years with
that outstanding leader, that smart student of psychology, the best manager in
baseball today, Joe McCarthy?
Sure I’m lucky.




When the New York Giants, a team you would give your right arm to beat, and vice
versa, sends you a gift – that’s something. When everybody down to the
groundskeepers and those boys in white coats remember you with trophies – thats
something. When you have a wonderful mother-in-law who takes sides with you in
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squabbles with her own daughter – thats something. When you have a father and a
mother who work all their lives so you can have an education and build your body -
- its a blessing. When you have a wife who has been a tower of strength and shown
more courage than you dreamed existed -- thats the finest I know.
So, I close in saying that I may have had a tough break, but I have an awful lot to
live for.

                  FROM AN INTERVIEW WITH DAVID ABELL

How has your life changed since being diagnosed with ALS? I realize
this is a broad one, please share whatever you feel is pertinent.

Obviously I'm not much of a basketball or baseball player anymore.
It's given me an opportunity to slow down & smell the roses. I've
also been able to see the best in people from my wonderful caregivers
to the kindness of strangers. It's amazing in the worst circumstances
people do some great things. I've become more compassionate &
Spiritual in my thinking. I've had to be willing to adapt to changes
as they come & try & stay ahead of the curve. I've become closer to
my family, parents, sisters, brother, Son, nieces & nephews. I'm
fortunate to have them all close by. ALS truly is a family disease.
My son Kyle is 18 & has grown into a nice young man & handled my ALS
better than I ever imagined. He does drive me nuts at times but
that's his job. I think my parents pay him to bug me too for payback.
(: The strange thing that happened is my nephew was learning to walk
as my walking declined. Only he didn't have as far to fall when he
stumbled. (: Now he & his brother are really good basketball &
baseball players.

How do you find the strength to be such a positive force/what
inspires you to really live your life?

I think my faith in God has helped me a lot in my life before &
after ALS. I knew where the
right path was even though I've done some serious off-roading. (: I
have a lot of people praying for me & all PALS. I know God must have
helped me get this far & hope he has more use for me on Earth. I've
tried not to ask Why me? too much but it's only natural for us. I
don't think God gave us disease because of anything we did wrong. In
fact many good people have had it worse than I have. I believe God is
all around us in good deeds that people do everyday. We can see this
if we slow down & really look.

If we're put on Earth to help others then I'm a golden opportunity.

ALS may take my body from me but it will never conquer my spirit.
There is always hope! Hope is what keeps humans going
                                         9
each day in whatever life throws at us. As long as we realistically
make plans or take steps to prepare for a worst case scenario while
remaining hopeful that things may be ok, that's not denial in my
opinion. Balancing being prepared but not dwelling on the "worst"
while remaining hopeful is the key to coping. The old adage "plan
for the worst but hope for the best" is good advice.
Steaming the Titanic at full speed through ice laden waters with few
lifeboats because of the unsinkable belief, that's denial or plain ol
PPP.


Do you know what Hope is?
It's magic and it's free
It's not in a prescription
It's not in an IV.
It punctuates our laughter
It sparkles in our tears
It simmers under sorrows
And dissipates our fears.
Do you know what Hope is?
It's reaching past today
It's dreaming of tomorrow
It's trying a new way.
It's pushing past Impossible
It's pounding on the door
It's questioning the Answers
It's always seeking more.
It's rumors of a breath
It's whispers of a cure
A roller coaster ride of remedies unsure.
Do you know what Hope is?
It's candy for the soul,
It's perfume for the spirit,
To share it, makes you whole.

Author Unknown


How do you handle the moments when you feel sad, frustrated or angry
with ALS?

Honestly, I'm seldom sad. I don't allow myself to feel sad. I use
humor a lot. You have to laugh at some things that happen. Like when
people talk loud at me. I didn't know wheelchairs made your hearing
bad.

I found when I let go of the things that were out of my control & let
                                            10
others help that I wasn't as angry & frustrated. I then focused on
other things I was able to do & became more contented & happy. It's
important for PALS to feel some worth & contribution no matter how
compromised we become. With my Eyegaze computer & ability to access
the internet I'm able to do many things my family cannot so that's my
niche.(:


My Dr. who dx'd me in June 1996 at age 29 said to me "You're not dead
yet." He's still right almost 10 years later. Back then there were
only a handful of websites on ALS & Riluzole was just approved by the
FDA. Now there are 100's of ALS Sites & orgs raising money for
research. The human genome project has mapped the genes of humans &
is still being searched for clues on possible treatments. Super
computers are testing all the compounds of medicines for possible
treatments & stem cells are being studied & MAY be the treatment or
cure we need. Polio & Smallpox were once devastating diseases & now
thanks to brilliant & dedicated scientists they are almost
nonexistent today. I have a lot of hope that the next Jonas Salk
(polio) or Edward Jenner (smallpox) is in a lab or classroom today. I
hope it will be soon though. I don't count the last times I'll do something again
anymore like I did at first. I seldom think about dying anymore & I really don't
think I'll die from ALS. I like Morgan Freeman's line in The
Shawshank Redemption. "You need to get busy living or get busy
dying." The point is don't worry about things you can't control. Keep
busy doing what you can today & learn new things to replace the old
things that you have to let go of. You will be surprised at how you
can adapt to each new challenge & find joy in simple things.


         To this life than meets the eye. You will have plenty of time to think about
          these things, the ultimate meaning of life, the nature and existence of
          something or someone beyond us and upon which we depend. You don't
          have to have any formal religious training or upbringing. The process of
          discovering meaning and purpose beyond our own little worlds is the
          beginning of spirituality. Spirituality does not have to have any
          complicated theology. In fact, the simpler the better.

         Trust your instincts. In spite of a lifetime of religious faith, I have come to
          believe that God did not cause me to have ALS, and in fact is as saddened
          by the bad things that happen to people as we are. I also am confident
          that God is with us in all of these things just as he/she/it has been with
          millions of others over the centuries.

         This disease can help us develop a sense of gratitude and wonder about
          the mystery of life and death. It has taught me to embrace the difficult
          experiences of life as opportunities instead of as obstacles to a meaningful
                                            11
          life. I enjoyed "Learning to Fall" by Philip Simmons, a teacher and writer
          who had ALS.

   Taking care of your caregivers.

         ALS is a social disease; it not only affects us who actually have the
          physical symptoms, it also profoundly affects and changes the lives of
          those around us who love us and care for us. We have a responsibility,
          especially if we want to learn how to adapt and prosper, to make sure we
          don't overtax our caregivers physically and emotionally. We will naturally
          tend to become demanding, frustrated and impatient at times. But the
          more we do this, the less people will want to be around us.

         Make sure your network of care is wide enough to give people some time
          away to recover and recuperate. Avoid the temptation to just pick out one
          or two favorites upon which to rely completely. No one, no matter how
          much they love us can handle the load by themselves.

         You will learn gradually that you can tolerate not getting immediate help
          that you don't really need: tolerating an itch you can't reach.




                       THOUGHTS AND THEIR RELATIONSHIP TO MOOD
                               By Randy Roberts

What we think about plays a major role in how we feel. That is obvious but much
more subtle than we realize, because we are often unaware of what thoughts are
running through our mind. We get so engrossed in the thoughts that their
relationship to our feelings is not easily grasped. The same brain chemicals that
alter mood are released whether an emotion-laden event is occurring or whether it
is being imagined. The brain doesn’t seem to register the difference. So, if we think
of a horrible event we feel the same way as if the event were actually occurring.

When I was first diagnosed and relatively free from major symptoms, I would wake
up in the morning feeling ok, but within 10 minutes I became an emotional wreck. I
didn’t really understand why until later when I realized that I had begun to think
about having a ―dreaded‖ and ―awful‖ disease. Focusing on those negative
thoughts destroyed my good mood very quickly. Then, I began to look at other
times during the day when my mood became blue and I realized, in every instance,
it followed similar negative thoughts. I was able to divide these pernicious thoughts
into three categories:




                                           12
     1. Reminding myself over and over that I had ALS, that I would never recover
        and questioning why this happened to me, thus re-traumatizing myself
        constantly.

     2. Thoughts about my limitations; what I couldn’t do anymore, what I was
        missing out on, envisioning myself becoming a ―cripple‖, etc. I noticed
        that seemingly minor events could instantly set off a barrage of negative
        thoughts, seemingly out of conscious awareness, e.g. seeing somebody
        running (I used to be a jogger), hearing others’ vacation plans, etc.

     3. Fantasies of what ―horrible‖ things awaited me in the future.


Thoughts of what lie down the road for PALS, which tend to focus on our worst
fears, are guaranteed to bring you down quickly, even though what we imagine is
often illusory. Our lifetime of experiences has taught that the future is filled with
the unexpected. Of course, obsessive worry is to be distinguished from reasonable
planning, which is valuable. But still we cling to the idea that we know what lies
ahead. A recent experience of mine provided yet another lesson. When I was first
diagnosed, I became focused on making certain all my financial matters were taken
care of. I called my stockbroker, told him of my illness, and asked him to take over
the remainder of our securities because I wouldn’t be able to manage them on my
own soon (which itself turned out to be inaccurate). He expressed shock and
sympathy at my plight and assured me that our assets would be managed well.
About six months later as I tuned into his weekly regular radio show and learned
that he had died in a tragic, freak accident. This vibrant and healthy 45 year old
man, who was supposed to take care of our assets for many years to come after my
death, was now gone and I was still here.

I began to see a one to one correspondence between the more exaggerated the
negative thoughts and images and the more miserable I felt.

I was also able to observe the opposite: when I was productively engaged in
something, I was not depressed. Where was the ALS then? Where was my
suffering?

I can say all this in another way. The future is unknowable and unpredictable. All
we really have, all that anyone has, is the present moment.

I also observed how negative thoughts, once started, develop their own momentum
and can take you far from your starting point. Here is a fictional example. You are
driving down a road, feeling ok, admiring a pretty view, when the thought pops up:
My arm is so stiff that I won’t be able to do this much longer.‖ And the following
internal dialogue may ensue, with your mood going down and anxiety rising the
more thoughts add on. ―Why did I have to develop this awful disease. How could
there be no cure. I am doomed. Why go on with life, with all the awful stuff coming
that I’ve read. Life had been so good and we were all set for retirement in a few
                                         13
years. I won’t be here when our grandchildren are born. I’ll miss so much. I don’t
want to die. I bet I will be one of those fast progressors. I don’t want to be a
cripple. I don’t deserve this. I can’t stand it anymore, etc.‖ So this person goes
from enjoying a pleasant experience to feeling hopeless and depressed, due to a
runaway train of thoughts.

As I became more aware of how these automatic negative thoughts destroyed my
peace of mind, I became able to drop some of them, just cut them off as soon as I
became aware of them, before they did more damage.

So newbies, try this: when you start feeling down and anxious, stop for a second
and identify what you had just been thinking or visualizing. I’ll bet it was one of the
three categories of negative thoughts and images described above or something
close to them. Just dwelling on them for a minute can detrimentally affect your
spirits, dwelling on them longer can wreck your peace of mind. Do this same
exercise time and again until you really begin to see the link between those
thoughts and your worsened mood. Then, work on letting go of those thoughts as
they arise. The earlier you are able to intervene, the better. Waiting until the
thoughts become entrenched makes for a tougher situation to deal with. Let the
downward spiral in your mood act as a guide. As soon as you feel it, get into action
mode. We can’t change ALS, but we can change how we think. You will feel better
and start living more.

One last point, don’t think I am saying that you should do away with all past and
future thoughts. Memories are a source of pleasure and define who we are.
Thoughts of the future can give us something to look forward to. However, just stay
alert because such thoughts can quickly turn negative as we drift into thinking how
ALS has ruined our lives.

Many PALS also take antidepressant and/or anti-anxiety medications to obtain
further help with depressed/anxious mood. You might speak to your doctor about it.


                      JEFF LESTER (―Raging Bear‖) INTERVIEW

If you've ever wondered what hope looks like, it looks like Jeff Lester. He was 26
and a former high school football player when he met his future bride.

"He was very sweet, very caring heart. Good looking, tall, dark, handsome," said
Lisa Lester.

But there was something wrong. That same year, after feeling weak and lethargic
for months, he was diagnosed Amyotrophic Lateral Sclerosis, also known as Lou
Gehrig's disease.

"And I didn't even know how to spell Gehrig, I mean like Lou Gehrig's disease," said
Lisa. ―I had to ask a guy how to spell Gehrig because I knew nothing about the
                                          14
player, the disease or anything."

Named after the Hall of Fame Baseball Player who died of the disease, ALS attacks
the nerves causing muscles to waste away.

Lisa decided to marry Jeff anyway.

"I don't know. We just had this connection. We loved each other and it was just one
of those things where a healthy man could die tomorrow. We just took it day by day
and took what came," said Lisa.

Thirteen years later, Jeff Lester is still very much alive. A ventilator helps him
breathe. And while you and I might have trouble Lisa understands him perfectly.

"This disease can take my physical but I'm going to live as normally as I can," she
translated as Jeff spoke.

Jeff's pride and joy are his children. Jordan is just four months. Emily is three.
Kelsey, who is 10, helps take care of her dad. Kelsey wants to become a doctor or
nurse when she grows up.

"Because I know a lot of things about ALS,‖ she said.

Jeff says one of the reasons he's beaten the odds is because he maintains a positive
attitude. Thanks to a computer and the laser technology on a special pair of
glasses, he's able to pass on that advice when he talks to ALS patients around the
world, while hosting a weekly chat on the Muscular Dystrophy Association website.
Dying, according to Jeff, is not an option.

"I really don't think about it. I'm too busy being a husband, father and working with
other ALS patients, he said.

There is no cure for ALS. But Jeff Lester believes there will be soon, and that one
day he may actually walk his girls down the aisle
Until then, he plans to go on living with ALS.


JEFF LESTER’S RESPONSE TO A POST ON PREDICTING LIFE EXPECTANCY

I will only add that you should not only ignore any prediction of life expectancy but
also totally IGNORE any limitations they give you. I was basically told to go home
and plan my funeral at 26 but instead now over 12 years, getting married, 3
daughters after that suggestion and with countless achievements under my
belt; MY LIFE HAS JUST BEGUN with an exciting business venture and more
writing in my immediate future and who knows what great adventures after
that maybe even getting off the ventilator and walking again (God willing

                                          15
and with a visionary political leader who rises above the noise to push
essential research forward!)



             A REPONSE TO A SOMEONE JUST DIAGNOSED WITH ALS
                              By Susan Staples

Oh Honey,

I recognize so much of myself right after my own diagnosis in
your post. You're exhausted and overwhelmed by everything right
now. Please, please hang in there and don't continue to despair.

You're still alive, and you're surrounded by love. Look at your
grandchildren, look at your husband (back with you after all these
years), look at the world around you.

The world we're in has so many beautiful things to appreciate
today and tomorrow. Enjoy everything around you, recognizing that
there isn't one among us who will get out of this life alive. That
said, no one is pushing you out the door today either.

Talk to your doctors about your inability to sleep and your
feelings of being overwhelmed to see what they can do to help you
get some much-needed rest so you can battle to LIVE with your
ALS.

Everything in life happens for a reason. Our job in life is
dealing with what's thrown at us. It sounds like you've done that
wonderfully all your life. Roll up your sleeves, Dear, and get back
in the game. Trust that there is a higher power watching over you
and your loved ones.

Write to let us know you've turned that corner and see the
bright light of day is ahead of you...with many more to follow.



                                     MY STORY
                                  BY GARY JEWETT

Pleez xcuz my Shrthnd, as im n my 12th yr LIVIN W/ ALS, aka Lou Gehrigs
Disease ... I type very sloly w/ 1 finger, so ever Shrtct counts ...
Bsides, wen th Brits conjured up th language, they made it 2 complicated



                                         16
Hi 2 all my felloW PALS & all my frnds ...as Mark Twain once sed, " th news of my
demise, has bin grossly xagerated"…Still on th ranch sw of Williams , i dont get
around much anymore, as th song sez but, i hope 2 get more nvolved as i "cultivate
more caregivers‖

i was recently ask y I’ve lived so long w/ ALS, so ill xplain my thoughts in
this lettr … im n good shape 4 th shape im n ..... lots of water under th bridge, as
im n 2 my 12th yr livin w/ th beast its a soberin thought
wen i think abt it, thers more & more of us sailin right past that magical 5yr
mmark, hopin 2 baround 4 th cure ......THERS HOPE N THE FUTURE ......... 4
THINGS I CREDIT 2MY LONGIVITY .......

1st is SPIRITUAL .dosnt take long 2 GET RELIGIOUS wen yur told u have a
terminal illness ... especialy wen yur told that you have is 5 yrs, & u
kno that used to be 2 or 3 yrs up ... dosnt matter if yur a CHRISTIAN,
JEWESH, BUDHIST, ETC .... AS LONG AS U REALIZE THERE IS A GREAT SPIRIT
THATS A DEMINSION WE DONT UNDERSTAND RITE NOW ..... wen u find the Lord
(watever he, she, or it is), yur on th rite track ... ther r many paths
leading 2 th same place wich n my faith is heaven ..... i attend church
services, Sunday School & Prayer meetins on a regular basis ... i havnt
bcum a fanatical born agen Christian, but i get a lot of support frm my
church family & i bleev n th power of prayer ........also included n
spiritual is Love......... wen i was named 1 of 2 Ironman PALS n 94, my
bro-n-law said after th banquet, he culd feel all th Love w/ n the hall
....thers a tremendous of Love thruout th ALS Community, as well as
my Church Family ....w/ Love they’ll find th cure ..... Americans r
obsessed w/ death ..its as natural as birth & n the grand scheme of
things,our life hear on earth is but a grain of sand on th beach .. RE
DEATH,...... iv planned my funeral & my closest dear frnds last week
delivered my casket . i gav them plans 4 a pine box & they came up w/
perfect knotty pine finished & put 2gether as th finest pc of furniture I own .. usin it
4 a "hope chest" now, but if i get my own diggins
it'll b a large coffee table .......its n my bedroom now & i look at it
everday, remindin me that no1 gets out of this world w/out dyin
another focal pt n my bedroom, is my restored (cost me $1800 2
restore it) hrdtop 4 my Austin Healey, wich reminds me that 1 of th goals n
my life, is 2 drive th Healey again..back 2 th casket; ill send a
picture & nfo wher 2 get th plans . jst 1 more thing dun & i hope 2 use
it as storage 4 another 20 yrs .... "ILL B TAKIN A LONG TIME DYIN; FOR
ILL B A LONG TIME DEAD"...... ILL B LAID OUT N LEVIS, SPENDERS, & A RED
SHIRT ...YA GOTTA LUV CLAMPER FUNERALS... Also, re my funeral, there will b a
min of Preachin & a max of music...people will b surprised who i pick 4 Pall Bearers
& Honorary P Bers, as iv overlooked sum frnds of
over 60 yrs n favor of thos that stood by me n ―Livin w/ ALS‖.. iv even
picked out th Parson & planned th menu 4 th party after th service
...im hopin it’ll b a happy celebration of my life, as iv said above,
people r obsessed w/ death, wile ever one does it .....’
                                           17
2nd is KEEPIN ACTIVE W/ YUR MIND ... people that no me, no that i have
many nterests & blong 2 many clubs .... ie, im still a comish on th Wms
Rural Fire Disrict,E Clampus Vitus,Guns (bin a life member of NRA since
1963), Austin Healey Club of America, Early Ford V8 Club of
America,(flatheds), Graham- Paige Club several Model T Clubs, restorin old cars,
huntin & fishin, Snowmobile club, Bucks Lake, ranchin n general, wantin 2 c & hear
frm old friends, meeting new
PALS & CALS n person & on th net, stayin up w/ research,and doing my best 4 ALS
AWARENESS, RAISIN $$$/ ALS, & more thins that i 4get
4 now .......i also have a never endin desire 2 learn more abt almost
everthing b4 i cross th river .......i surf th nternet a lot & read a
varity of magazines & nuzpapers........ I ADVIZ NU PALS 2 KEEP SUM OF
THEIR ―TOYS‖ & HOBBIES, AS IV DUN..... U C THAT IM 2 BUSY 2 GET SICK OR
LET ALS TAKE OVER & RUN MY LIFE........

3rd ... is HUMOR ...i njoy all sorts of jokes rangin frm super clean to
rank ...... if u go thru life w/out laffin, u wont last long ...there’s
lots of humor of ever kind on th net, so if your readin this, u hav access 2 lots of
people & lots of sites, thus no excuse 4 not smilin ....... i luv the work of John
Calahann, & visit his site on a reg. basis . hes a Virgel
Parks "as n VIP" type, but his focus is on people w/ disabilities . My
favorite is th 1 that shos th old west sheriff w/ his posse, surruondin an
Empty wheelchair.... ther r crawl tracks leedin away & th caption sez
"dont worry boys, he wont get far afoot" ..... gotta luv it ....... if u
cant find humor n yur disease, it'll consume u .

4th... EMBRACE TH DISEASE ... consume it & spit it out ...... when they
wrote me up 4 winnin th Bay Area ALSA Ironman award n 94, they say
my tenacity was my strongest trait ....... I’ve never have let on
that ALS will ever beat me .. i believe I’ll beat it .. not a false
hope, but a reality … get involved w/ the many resources available on
Internet.......if u dont use a computer, use the fone or th snail
mail.........help raze $$$ 4 research, as private $$$ gets results
then th govt $$$....... be vocal, rite letters, spread the word ...its

called ALS AWARENESS... I KNOW OF NO OTHER DISEASE THAT HAS A WORLD
WIDE SUPPORT SYSTEM LIKE ALS .. there r 100s of ALS sites out there ..
4 starters i tell interested people 2 chk out the
<living-with-als @yahoogroups.com>, & subscribe 2 Bob Broedel's ALS Digest, iv
got a long list of sites, but that’s a startin point .
again, as u can c im 2 busy 2 b very sick ..sure, i cant talk, walk or
eat normal, but I’m still control my destiny ...... i even think, i can
contribute sumthin b4 i go 2 the Golden Hills, up younder .. every PALS is a
different story & different circumstances .. there’s no prototype,
jst sayin what works 4 me .....
                                          18
Keep th Faith, God Bless, & of course,
 Love to All



                             JUDY’S APPROACH TO ALS
                                By Judy Rutherford


I am like every one else, I
have my down periods but I don't let them last too
long. My personality before ALS is the same after my
dx. We as pals lose control of our body but we still
have control of deciding what type of mood we want our
minds to be in. I chose to be in a good mood, and
have a fun sense of humor. Also I have had time since
my dx to spend a lot of time with myself and exploring
many different spiritual beliefs. I was a very
physically active person before my dx. Now my brain
gets all the activity. I've never been bored in my
life; I've just always found something else to do. I
spent alot of time after dx catching up on my art
hobbies. Now I spend a lot of time on the computer,
ordering movies, bird watching, sunning myself outside
and just enjoying quiet moments. Being bored is a
choice. I am still enjoying myself.



                                   REFLECTIONS
                                By Chris Pendergast

Chris is president of Ride for Life, a strong advocacy organization on behalf of ALS.
Through various fundraisers, Ride for Life raises hundreds of thousands of dollars
which is distributed to researchers to help find a cure for ALS and to patient
services. Their website: http://www.rideforlife.com/ provides further details and
contains many features of interest to PALS.

When I saw the posting on living with ALS which called for long term patients to
submit their thoughts about their experiences with the disease overtime, I felt
obliged to write. My name is Chris Pendergast and I was diagnosed on October 13,
1993.

I am currently in my 13th year of living with this very unwelcome guest within my
body. By the grace of God, or blind luck (you take your choice) I have had a very
slow progression. My breathing is still reasonably good, probably in the 50% of
                                          19
normal range. I began using nightly bipap support in the hopes of maintaining
optimal lung health and condition. For colds and congestion, I have a cough assist
machine to assist me with clearing mucus and keeping my airways clear and open.
A pulse ox machine helps monitor my O2 level. I am still able to talk and eat as
well. However, my speech is no longer as strong and clear as it was in the past.

Although my symptoms presented first as foot and ankle weakness, I am still
walking to this day. Well, I like to call what I do walking, but my wife would argue
otherwise! She says I ―walk‖ like a drunken sailor. I do not walk far nor outside.
However, for those short distances around the house or a building, I still ambulate.
I am happy each time the legs move and transport me. My arms have quit on me
years ago, so I cannot use a walker. I gave up driving about 5 years ago. More
recently, my fingers decided to take a permanent vacation. That translates, I can’t
type or channel surf (or pick my nose, for that matter). Normally, I do not list or
speak about my inabilities. Since this is for other PALS, I am certain you are
curious about my function and so I wanted to describe them. It is far more healthy
and upbeat to identify those things I can still accomplish along with finding new
things to enjoy. Regardless of the loss, there are doors that open and opportunities
arise which allow us to do different or new things.

The Manual’s creator, Randy Roberts, wanted us to reflect and share our insights
about the disease. After reading all of the thoughts express by the previous
writers, I wondered what else I could add? They did such a good job. I agree and
support the wisdom and advice presented. I will try to add some novel ideas.

Above all, my goal is to give hope to newly diagnosed patients and their families.
Let me broadcast loudly and clearly, ―Life goes on after diagnosis. Good times are
still ahead. So are challenges and unforeseen obstacles. From this point forward,
what happens to each PALS and their family is wholly within your power to control.
ALS does not end your life, it only changes it.‖

Writers have pointed out that ALS is not fatal in itself. It is the damage done by the
paralysis to other organs which lead to death. There are steps that can be taken at
each stage which will preserve life. The question that must be answered, and only
each individual PALS can do it, ―how can I be happy, content and at peace‖ at
different stages of the disease. Living as long as I have, I have met the full range
of reactions. I know people enormously happy and productive although tethered to
a vent. They get out and about. They write, read, manage their finances, play
games all those activities that we consider normal. Living with a vent is an
inconvenience, not a nightmare. In fact, during our Annual Ride for Life, which is a
multi-day 150 mile journey, we have had vent patients join us!

By contrast, I have met PALS who were so distraught at needing a cane or requiring
assistance with dressing. Few of them were able to cope with the progression of
the disease. Each loss was marked with inconsolable sadness layered with
bitterness. Rather then surviving (and even flowering) in spite of the disease, they
sunk in a deep, dark hole.
                                          20
What makes PALS react so differently? Is it possible that with encouragement and
support, PALS can be guided to a different view of their illness? Can they learn and
fight to create a healthy mental outlook which will make their surviving years
happy? Can we help PALS who are optimistic and encouraged remain that way? I
believe they can and that is why I am writing.

Other writers have given wonderful advice. Stay positive and engaged in
productive activity. Keep abreast of research and be involved in some advocacy
group. Become an expert and advocate for your care. Stay ahead of the wave and
know what steps and adjustments lie ahead. Take part in fundraisers and
awareness activities. Embrace your illness and learn to live with it instead of
constantly fighting against it. Adjust your life, so you can continue your journey,
rather then dig in and refuse to accept the inevitable changes. It is like the Kenny
Rogers song, ―You gotta know when to hold them and know when to fold them.‖

Allow others the joy of helping you. Think back about when you helped others and
remember the good feeling that it brought you. Don’t let your pride and
stubbornness interfere with loved ones and friends who are eager to help you.
Ironically, your need can be a blessing to someone else who has the opportunity to
be a friend and help.

Lastly, don’t fear death. Everyone will die. It is inevitable. Once you are struck
with an illness like ALS, death is no longer an abstract idea. We face it in the mirror
everyday. Carrying the fear of death can be devastating and debilitating. Facing
and accepting it is liberating. Henry Thoreau expressed it best when he said he was
not afraid to die, he was more afraid of never living.

So my ALS family, let me challenge you to follow the words of Thoreau. Don’t be
afraid to die from ALS. I want you to be afraid of failing to live while you have it.

I continued my career as a teacher even though I was dependent upon my electric
scooter and I was unable to write. I believe my students learned far more about
life than from any other teacher they had. Even with my serious disability, I was
nominated as a candidate for New York State Teacher of the Year. I retired after
reaching pension benefits in 2003. I continue to teach through school
presentations I deliver about ALS throughout the Metropolitan New York area.

Early in my illness, I formed a not-for-profit, IRS recognized charity to raise
awareness and money for research. With the help of countless friends and
supporters, we have ridden thousands of miles, across a half a dozen states on our
mission to spread awareness. Through the efforts of so many PALS and their
families, Ride for Life has raised nearly 1.5 million dollars which funded so many
research grants and assisted scores of patients. I have published stories and
articles about the disease.



                                           21
Today, at 56, my life is not at all like I dreamed. My pension does not pay for a
winter retreat but instead for a live in caregiver. It is not a life I would have
chosen. However, none of us can select our future. We all plan for our future but
so often life makes us do a ninety degree turn. All we can do is take what we are
given and make the very best of it.

I shared some of my accomplishments and life not for praise or out of pride. I
shared it simply as a model. I am not superhuman. I am no different than the
other long living PALS who have written about their lives. What we have done, you
can do. We simply want to give you hope.

A treatment will be found. The disease will be slowed or stopped by medicine. It is
only a matter of time. I hope everyone who reads the Manual will live to see that
day.

My final thought is personal and perhaps controversial. Don’t be afraid to turn to
God.



                          MY STORY OF LIVING WITH ALS
                                 By David Jayne

This month marks 18 years when ALS symptoms first appeared in my left arm. I
was diagnosed later in 1988. In the same week I was diagnosed I found out my life
long dream to become a father had come true. While that week was incredibly
bittersweet, I am certain it is the key to my longevity. After I recovered from the
shock of the typical death sentence we all receive, I decided ALS would not take my
life because I had a child to raise. I want to share some thoughts from my
experiences.

Diagnosis, I was diagnosed very early in the disease process. I was sure it was
nothing more than a pinched nerve. I was diagnosed at Emory University hospital
and I agreed that interns could follow my case. The day the neurologist told me I
had ALS; I was seated on an examination table with several interns surrounding
me. The neurologist spoke matter of factly, it was how I would prefer to be told I
was going to die if I just had some idea that kind of news was coming. I was so
unprepared that my first thought was to be concerned for an intern that was
physically shaken by the neurologist's words. Yes, it is devastating and life
changing, but life does not end when you are diagnosed. ALS for the most can be
managed as a disability rather than a terminal illness.

For me the decline into paralysis and letting go of my wanted way of life was much
more difficult than being paralyzed. With all of the challenges facing us, we must be
proactive in our care. I imagine I have encountered just about every challenge ALS
can dish out except being locked in. There were solutions available for every
problem I faced, but I had to seek most of them out myself. You need to attend an
                                         22
ALS/MDA clinic or at least see an occupational therapist and a physical therapist at
a rehabilitation hospital with a seating clinic for wheelchair fittings.

Adaptive equipment- I was so foolish early on and I thought if I used adaptive
equipment I was giving into the disease. Please do repeat my mistake. Everything I
have used has restored some degree of independence and improved qualify of life.

Feeding tubes- Everyone should get one at the first hint of swallowing or speech
difficulty. Again, I was an idiot and postponed this almost too long, because of my
foolish thinking. For those of you that have decided not to take any life prolonging
measures, a feeding tube will do nothing to arrest the disease process. A feeding
tube will greatly improve qualify of life and prevent hours of stress on your family
and caregivers watching you choke. I deeply regret being so selfish and putting my
family through that. I strongly recommend to only eat food through your feeding
tube. If formula was so wonderful why doesn't the rest of the world without
swallowing problems exist on Ensure and Boost? Doctors best argument for not
eating food is the feeding tube will clog. That is a simple problem to solve. Demand
prior to surgery at least a 20 french size feeding tube. I have never had a problem
in 13 years and I am certain food is a major factor in my longevity.

Bi-PAP- Well, breathing with a bi-pap is like hanging your head out the car window
going 90! Seriously, with a properly fitting comfortable mask or nasal pillow, a bi-
pap can easily become second nature. Find a new doctor if your doctor recommends
a c-pap. Again, a bi-pap will not arrest the disease process, but it will greatly
improve qualify of life.

Ventilator- Deciding to go on the ventilator is a personal decision. Critical things to
consider, rate of progression, family and situational finances and do you find
enough enjoyment living with ALS. Your decision once on a vent is not permanent;
the Supreme Court has ruled a patient can elect to terminate mechanical ventilation
therapy.

Miracle cures, therapies and supplements, save your precious money, time and
energy. I have seen many and waste money on a supplement years ago. Millions
are spent every year attempting to cure and arrest ALS. News of a legitimate cure
or therapy will spread like a wild fire. Hope is critical for our survival, but false hope
can be more destructive than this disease.

Finally, ask for and accept help. Learn to laugh at yourself. Believe you can still
make anything possible, because you can.



                           FIVE YEARS OF LIVING WITH ALS
                                  By Chris Stammler



                                            23
In my personal opinion I think family support and my deep faith have helped me
through many rough times. In 2001 I was told by my doctor that I would be lucky if
I lived two years. In the early days after diagnosis, I was very depressed and I felt
like no matter what I did I was going to die so it didn't matter.
The doctor was wrong. i have lived almost five years. I think the doctors need to
understand what it is like to receive that death sentence. Not until I told myself I
wasn't going to let this thing control my life did I see that I could live with this
illness. Then the more time that passed I realized I was still alive. I cherish every
moment with my family. I know I wouldn't be here if it wasn't for God. My will to
fight is very strong and my will to live is even stronger. I have two teenage sons.
My oldest is going to graduate this year and my youngest is going to graduate next
year. I live with my mom. My sister has taken the role of my caretaker. I have
excellent support. I was only 33 when I was diagnosed. I was working 12 hour
shifts I never thought anything was wrong, until I started tripping over nothing.
Then I woke up one day and there it was staring me in the face. I believe that pals
& cals are the best, bravest and most caring people I have ever met.




                                      A Poem
                                   By Cathy Wolf


Resolved

I refuse to die
I choose to defy
Prognosis (poor)

I will see
Daughters
       Graduate
       Marry
       Grandchildren

I refuse to die
I choose to defy
Prognosis (guarded)

I must
     Love
     Help
     Work
     Dream
     Eat chocolate every day

                                         24
I refuse to die
I choose to survive
Prognosis (good)


                      TIPS FOR NEWLY DIAGNOSED PATIENTS
                           BY WILL HUBBEN (from ALSA)

1. Be compassionate to yourself. If you
are like me, your first reaction to being
told you may have ALS is shock and
fear. We all go through wild emotional
swings when we hear such dreadful
news. Allow yourself to go through
denial, grief, anger, and whatever else
you feel without criticizing yourself for
it. It's natural and necessary for you to
experience powerful emotions. Many
feelings will arise again and again as
ALS progresses. This will pass, and
being gentle with yourself is a big help.

2. Reach out to family and
friends. Many people may want to help and not know how. Talking openly to a
family member or friend about your situation will help both of you cope. Ask for
assistance with preparing meals, running errands, doing household chores, or ask
to be taken to the movies. Building a support network will help you and your
primary caregiver. Also, this allows family and friends to get involved.

3. Learn about ALS. Knowledge is power. ALS tends to make people feel powerless.
Learning all you can about the disease, about supplements and drugs that might
slow progression, and about current research, can help empower you. Sharing what
you learn will help raise awareness about ALS and the need for more research
money.

4. Do everything you can for your health. Improve your diet, quit smoking, take up
yoga and/or meditation, practice positive visualization, get plenty of sleep, and
work with your doctor to develop your own regimen of helpful vitamins. Every little
effort will help you, both physically and mentally.

5. Take charge of your treatment. Pick your health care providers carefully.
Remember, they work for you. Talk to your primary care provider and your
neurologist about any vitamins and supplements you may want to take. Ask lots of
questions. If they don't patiently and respectfully answer (or research) all of your
questions, fire them and find someone else. Don't be passive about your treatment
options. You are always in charge.

                                            25
6. Develop a relationship with a major ALS center. Centers and clinics associated
with The ALS Association have a lot of experience with ALS. They take a
multidisciplinary approach with ALS patients and can be helpful at every stage of
the disease. The ALS clinical team is there every step of the way to provide expert
medical care to people living with ALS. A list of ALS centers and clinics affiliated
with The ALS Association can be found here.

7. Do things you have always wanted to do. Take that trip to Europe, spend more
time with your family, go skydiving, write a book, or raft the Grand Canyon.
Whatever it is, go ahead and do it. In a few months, you may no longer be able to
do these activities.

8. Find ways to help others. One of the best ways you can help yourself is to help
other people with ALS. Consider raising money for research, joining advocacy
efforts, volunteering for clinical trials, attending support groups, and reaching out to
others who need emotional support. Giving to others enriches your life as well as
theirs.

9. Practice hopeful, positive thinking. Maintaining a positive attitude in the midst of
trying circumstances takes practice, but it's worth it. Not only is your moment-to-
moment experience improved, but experts agree that a positive attitude can
improve your body's resistance to disease. Remaining hopeful helps me to enjoy my
life, in each moment. In addition, a lot of promising research is being conducted in
many different areas of investigation. Remember, a breakthrough could happen at
any time.

10. Stay ahead of the curve. Get a wheelchair when walking difficulties begin, even
though you can still walk. Get a feeding tube before you lose weight. Begin using
augmentative communication aids before you need them. Get respiratory support
by using a BiPAP at night as soon as possible. By taking these and other steps
early, you remain in control. No one with this disease regrets doing these things
early; many regret waiting too long.



                            ALS IS NOT A FATAL DISEASE

Dear Friend,

My name is William Kibbie. I was diagnosed with ALS in 1974. Contrary to what
most people have been told, ALS is not a fatal disease unless you want it to be. ALS
is a progressive disease with very serious physical challenges. If you have been
diagnosed with ALS and you want to live, you must manage each challenge as the
disease progresses. In other words:

      If you cannot swallow - get a gastrostomy.
      If you cannot breath - get a tracheostomy and a ventilator.
                                           26
      If you get contractures (stiff joints and muscles) - get range of motion
       exercise.
      If you cannot talk - get a computerized machine that talks for you.

Right now you are probably thinking: "How can I possibly handle all of those
physical problems?"

First, while ALS is a progressive disease, it also reaches plateaus where it stays
without new developments and this allows time to adjust and then prepare for
future progressions.

Second, I am living proof that it can be done. As of this year (1999), I have
survived 26 years with ALS and am looking forward to 26 more. I am in no pain, I
am involved in many projects, and I truly enjoy my life. My outlook is; I am NOT
SICK! I am a very healthy person who has some physical handicaps. I am sure that
Stephen Hawking, one of the greatest scientific minds of the twentieth century who
has had ALS now for over 35 years and continues to work, would agree with me
that ALS is not fatal.




                            ALS AND PERSONAL GROWTH

                                  By Randy Roberts



It may seem strange or even repulsive to link this disease, which so cruelly ravages
our body, with anything even remotely positive. But as ALS pushes us to our very
limits, we have the motivation and opportunity to see ourselves and our lives in
very different ways. For me, it has been a spiritual awakening, in the broad sense
of that word. The psychological walls that I have constructed to protect myself have
been crumbling and my heart is open as never before. I have become more
sensitive to the suffering felt by those who have lost their health and more attuned
to the pain experienced by so many in this world of ours. I have come to feel a
new appreciation of life and all the gifts given to us, gifts that are taken for granted
when healthy. I know now that it all isn’t about me (surprise!) and that there exists
a vast and indefinable presence that connects all of us. And I have felt brief
moments of peace that I have not experienced before.

I have also seen the power of living in the present moment or, more precisely, of
being the moment. When we are able to still all the internal chatter of reliving the
past and thinking of the future, all of which are just dreams and imaginings, what is
left is moment by moment living.



                                           27
I have also obtained a clearer distinction between image and reality in ALS. Image
is a projection of all of our negative ideas about what it is to be disabled, learned
from conventional societal attitudes. Reality is what people actually experience
when living with ALS, which can be much more positive than our images, as
personal stories in this Guidebook illustrate.

Many sources have helped contribute to my new found awareness, including my
spiritual training which began in earnest about a year ago, but reading the daily
posts on the living-with-als groupforum has been an important factor. One’s
heart cannot but melt when reading posts of deep distress, helpfulness, courage,
compassion, caring, optimism, determination, good humor and encouragement.

While ALS takes away options that were once present, it can also act as a stimulus
to develop new ways of perceiving oneself and life. I feel that I have barely
scratched the surface and look forward to going more deeply into the spiritual and
personal development realms as time goes on.


                       ALS -- NOT CURABLE, BUT TREATABLE

                           By Edward Oppenheimer, M.D.

Dr. Oppenheimer was on the faculty of UCLA Medical School Neurology Department. He
was a strong advocate for PALS and was a member of Living with ALSA, where he often
answered questions and wrote valuable, informative articles, such as the one below.

Many diseases can, of course, cause death if not treated. High spinal cord injury, a
serious infection, an appendicitis, etc., can kill when neglected. When treated, these
are still serious conditions, but usually life can continue and death can be
prevented.

It's true that the average length of life of people with ALS today is about four years.
However, this reflects the fact that people with ALS often don't have optimal
treatment and resources.

If ALS is to be fully treated, people with the disease should have;

      Adequate information about the treatments available
      Access to health professionals who are interested in and experienced
      With all the available options in the care of ALS
      The encouragement to go forward
      The needed resources to go forward
      The desire to use available care

When the patient lacks the desire to use available care, after having been fully
informed and provided with a positive approach from professionals such as doctors,
nurses, physical and occupational therapists, social workers and others, not

                                          28
proceeding is acceptable. However, when any of the needs cited are insufficiently
filled, not treating ALS to the fullest is regrettable. Ideally, this situation shouldn't
exist.

What is "fully treated" ALS? The answer is my "wish list" for all people with ALS;

1. A positive and experienced team approach to assist patients and their caregivers
in solving any of the problems that typically occur. This means a patient should
have access to a team of adept and enthusiastic health professionals who are
available even when the patient isn't taking part in a research protocol. The team
should include professionals who can make home visits and coordinate care as
needed.

2. Very good nutrition to maintain appropriate weight. At some point this may
include using a gastrostomy tube (feeding tube) if swallowing problems occur.

3. Regular social interaction with friends and the community. It's vital that the
person with ALS get out of the house by using mobility assistance, stay engaged in
living and maintain ways to communicate even if speech becomes difficult. Good
alternative and augmentative communication devices are essential.

4. Personal assistance to cover each 24 hours as needed, without placing an undue
burden on family members.

5. Vigorous treatment for infections, particularly respiratory infections. This can
often be provided at home with appropriate antibiotics when needed. Medication
can be given by mouth, via a feeding tube or even intravenously, depending on the
person's condition.

6. Monitoring of breathing capacity so noninvasive assisted ventilation can be
available when capacity is decreased and related symptoms are present. An ALS
patient can receive mask-delivered or other noninvasive ventilation as long as this
works, and then shift to tracheostomy (invasive ventilation, via a tube into the
trachea) if that becomes necessary. Equally important are good attention to
effective coughing and clearing of secretions, and prevention of aspiration (inhaling
particles, such as food, into the lungs). The decision to stop using a ventilator at
any time, or to use only noninvasive ventilation and not go on to tracheostomy
ventilation, should be made by the patient.

7. Access to ALS research centers and protocols when desired, and access to
excellent ALS care even when there is no desire to participate in research.

8. Very good supportive care.

9. Good symptom-relieving care when major aspects of treatment are no longer
desired or appropriate.

                                            29
When most of these aspects of care are available to people with ALS, they can often
continue living in a productive way and avoid life-threatening complications related
to ALS most of the time. ALS motor neuron impairment may become severe, but
life and spirit and social ties can continue.

Ideally, people with ALS should have choices. They should know that there are
options that will allow living to continue even if the resources needed are
considerable.



                                  SIGNATURE EXPRESSIONS

Gathered from different sites, these expressions, placed at the end of posts,
illustrate coping mechanisms in highly condensed form. They are little gems.

Don't forget to live!

Your friend in the fight

Laughing is good exercise: it’s like jogging on the inside

Living & loving everyday

There is no such thing in anyone's life as an unimportant day.

When you find yourself in a hole . . . first stop digging!

It's not in our abilities that we show who we truly are, it's in our choices

I know God will not give me anything I can't handle. I just wish that He didn't
trust me so much. (Mother Teresa)

Life's a dance, you learn as you go

            PSYCHOLOGICAL ISSUES OF NEW PALS AND COPING IDEAS
                             By Randy Roberts


                                    You are getting way ahead of yourself; ALS is a
I am afraid of dying: will it       gradually progressing illness.
be painful, will I suffer, will     Morbid thinking creates lowered mood, let such
it happen soon.                     thoughts go. Focus on living now. Find interesting
                                    activities to preoccupy your mind.
                                    Nobody, sick or well, knows when they will die, only
                                    that all of us will pass away at some time.
                                    Become involved in spiritual work.

                                             30
                               There are many ways to extend your life span. Be
                               proactive, stay ahead of the disease.
                               Remember, ALS does not have to be fatal, you
                               have a choice.

My life will never be the      Grief is a normal, painful stage that all PALS have
same; how can I give up all    to work through. It doesn’t last forever, but may
my dreams, hopes and           return after each new loss.
plans.                         You may continue with your regular life for awhile
                               and follow thru on some of your plans, just sooner,
                               like special vacations, etc.
                               As you adjust to your limitations, new plans and
                               goals will be set.
                               Reread the personal stories in this section. Pay
                               special attention to PALS’ descriptions of their
                               meaningful, rewarding and happy lives even with
                               ALS.

I feel depressed and anxious   Depression and anxiety, like grief, are expected
all the time.                  reactions.
                               Identify what you are thinking when you feel bad.
                               Is it a negative? Observe how it worsens your
                               mood and then try to let the thoughts go. Stay
                               aware of such negative thoughts and let them go
                               each time.
                               Seek spiritual guidance.
                               Work at focusing on positive goals, projects, things
                               that interest you but you didn’t have time for in the
                               past.
                               Focus on what you still have. Appreciate that which
                               is taken for granted when healthy are truly special
                               gifts.
                               If bad feelings persist, discuss antidepressant/anti
                               anxiety meds with your doctor or increase what you
                               are now taking.
                               Join living-with-als group, ask for suggestions,
                               establish an on line peer support network. Let
                               yourself be inspired and encouraged by what you
                               read.
                               Consider counseling or therapy.
                               Communicate your feelings to others. Don’t let
                               yourself get cut off from family and old friends.
                               Build a new support network.
                               A little humor can work wonders. Find somebody or
                               something that makes you laugh every day.


                                        31
I am fearful and               Again return to the present. Let negative thoughts
embarrassed about              dissipate. You are getting ahead of yourself.
becoming dependent on          When the time comes, you will be surprised that
others.                        you will welcome the assistance, as it becomes
                               exhausting and risky to try to do something
                               independently when capacities diminish. You can
                               now use your energy more productively on other
                               things that really matter.
                               Aren’t all people dependent on others, anyway?
                               Your embarrassment or shame will wither away as
                               you realize that it is no big deal and your caregiver
                               views it as no big deal.

I keep thinking of what lies   Go back to the present. Worrying about future
down the road                  events leads to worsened mood. Let the thoughts
                               go as they are preventing you from living well now.
                               Nobody knows what lies in the future, e.g. an
                               effective drug against ALS could be discovered
                               soon.
                               Become involved in interesting and productive
                               activities instead.
I am so angry all the time     Anger is a normal reaction to what has happened
                               and is a stage that must be worked through. It
                               becomes a problem when it persists and you
                               become bitter and closed off. Then you are not
                               living with ALS, but are being eaten up inside.
                               Chronic anger and irritability may reflect underlying
                               depression. Speak to your health care professional
                               about it.
                               Try a visualization technique. Imagine ALS to be an
                               object of some sort. I visualize a hideous looking
                               scarecrow, and then proceed, in my imagination, to
                               inflict all kinds of punishment to him: kicking,
                               chopping, punching, bludgeoning, till he is reduced
                               to pulp. I may do this for 5 minutes and I always
                               obtain a sense of satisfaction and release. Just give
                               back to him what he has done to you, no holds
                               barred.
                               Join living-with-als group. As you read the posts
                               your heart may open up.
                               Bitterness and chronic anger prevents you from
                               living your life to its fullest; they close off options
                               and keeps you imprisoned in their grasp.


How is my illness going to     It’s very stressful on caregivers, but many handle it
                                          32
affect my marriage or          well. Some CALS, however, are not able to manage.
relationship with my           Discuss issues directly with your CALS; don’t
significant other.             assume anything.
                               Help make arrangements to reduce stress, or
                               encourage your spouse or other family caregiver to
                               do so, when things become too difficult for him/her,
                               e.g. paid care providers, help from family and
                               friends, etc
                               Express your appreciation. Thank you’s, and
                               expressions of affection are helpful.
                               Don’t take out your resentment on your spouse and
                               make an effort to apologize if you should slip.
                               Working together can bring you closer.
                               If conflict or dissatisfaction become intense, and
                               can’t seem to be resolved, consider counseling or
                               begin to think of alternative living arrangements.
                               The earlier you can detect problems in your CALS’
                               commitment and/or major shortcomings the better.


Why did this happen to me?     Every PALS and their CALS ask this painful
                               question. It seems to demand an answer but of
                               course there is no answer. Coming to grips with it is
                               part of the acceptance process. It lessens in
                               intensity and frequency over time.



                                COPING WITH ALS
                                 By Loris Buccola
         This piece integrates many of the ideas presented in this chapter


I was diagnosed with limb onset ALS in November 1999 at age 58. I'm pretty much
completely quadriplegic, retaining head and neck movement. I still have my voice
with volume somewhat diminished, swallowing and breathing also diminished
(forced vital capacity below 30% at my last measurement a year ago) but intact. I
had a feeding tube placed December 2004 and use it for supplemental nourishment
once a day. I use a BiPAP at night and portable ventilator (LTV 900) as needed
during the day. I have a Permobil power wheelchair with four-way seat adjustment,
Switchit head controls and a Roho cushion. I sleep on a Pegasus Airwave mattress
and an adjustable bed. I use Dragon Naturally Speaking, Smartnav head mouse,
dwell click software and Skeleton Key (an on-screen keyboard) to navigate the
computer. I have a tablet computer for my wheelchair with which I can control
electronic devices. I have a Ford Windstar with a VMI wheelchair access conversion.
Although I'm retired from a 40 year teaching career, I still continue to do
professional counseling, writing and e-mail correspondence with friends and family.
                                        33
I still "read" using the Talking Books Program (through the Oregon State library)
extensive library of books on tape. I'm also a movie buff and subscribe to the
Internet DVD service, Netflix. Here are some techniques and attitudes I have
discovered which have helped me to continue adjusting to this disease, avoid
depression and continue to appreciate life.

  1. Attitude is everything.

            ALS is a challenge to adapt, rather than a battle to be won, an
             opportunity to learn the art of acceptance. Learn how to pick your
             "battles" by learning new skills instead of struggling to deny the reality
             of what is happening to your body. People will think you are really wise
             and spiritual and will want to be around you. It's magic.

            Although it will be difficult at first, resolve immediately to learn how to
             ask for and even enjoy getting help from other people. If this disease
             can teach us anything, it is that we cannot survive alone. It will bring
             you closer to them and them to you. Some people may not be able to
             handle what is happening to you except by staying away. That is their
             problem, not yours.

  2. Plan realistically for the future.

        The name of the game with this disease is adaptation. Try to avoid wasting
         valuable time which you need to plan for the coming changes in your life.
         If you wait for a crisis, it will probably be already too late.

        Begin now learning to conserve your energy by not trying to do more than
         you are realistically capable of. Deciding what is realistic and what is the
         best use of limited energy is a major step in adaptation.

        Anticipate the future just enough to ask yourself how you will adapt as
         your physical strength declines. For example, I began learning how to use
         speech software before I really needed it. By the time I did, I was
         proficient at it. It took six months to get wheelchair I needed. Learning to
         use head controls, getting used to using breathing assistance, feeding
         tube, etc. all takes more time than we anticipated.

        If you have not already done so, consider attending an ALS support group.
         It will be difficult at first to see people in all stages of this disease. I had to
         resolve to go back for three group meetings. By that time I was already
         getting used to this look into the future, learning how other people cope
         with what is happening in.

        We do not easily recover from setbacks from illness or physical injury as
         we did prior to the onset of this disease. Time wasted is time lost for
         adaptation. So, for example, don't push yourself to continue walking until
                                            34
      you fall and break a bone.

     In spite of what you may hear, there is no cure for this disease. Pursuing
      claims of cures will only cost you money and put you in a time deficit.
      Once you have been diagnosed, avoid falling into the trap of believing that
      it is something other than ALS (Lyme disease, mercury fillings, etc.). When
      an effective treatment is discovered we will all know about it and someone
      will no doubt get the Nobel Peace Prize. My own rule on this: put me in
      touch with three people who are clearly diagnosed who have at least six
      months on this "treatment" and let me talk to them personally about how
      it has worked.

3. Dealing with Depression

     ALS is a lousy disease and quite unfair. But try to avoid taking it
      personally. It did not happen because of anything we did or did not do.
      Give yourself the luxury of feeling sorry for you only on a limited basis, for
      example an hour a day or, even better, an hour a week.

     Avoid dwelling on or worrying about all the awful stuff you may have to go
      through in the future, or ruminating on all the things you did not do in the
      past. Of course, some of us with ALS have other things to be depressed
      about besides the disease and this can make avoiding depression much
      more difficult.

4. Do something every day that gives you pleasure.

      I love my morning coffee, having my head scratched, getting a warm
      shower, watching a good movie, listening to a great book, listening to jazz
      and blues, following the sports scene.

     Be with people whom you love and who love you. You have a right not to
      be with people who sap your energy. People will like being with you if you
      can help them get used to what is happening to you. Be nice.

     Plan for things in the future that you can look forward to, like visits from
      children and grandchildren, friends etc.

     Cultivate a sense of humor about this disease. Some of it is so ridiculous
      that it is actually funny. For example, I have unbitten fingernails for the
      first time in my life.

     Seriously consider antidepressant medication. It is not addictive and it is
      not a weakness to need medication to help out with the symptoms of
      depression.



                                       35
         If you have not already, begin to cultivate a spiritual approach to life.
          There is more to this life than meets the eye. You will have plenty of time
          to think about these things, the ultimate meaning of life, the nature and
          existence of something or someone beyond us and upon which we depend.
          You don't have to have any formal religious training or upbringing. The
          process of discovering meaning and purpose beyond our own little worlds
          is the beginning of spirituality. Spirituality does not have to have any
          complicated theology. In fact, the simpler the better.

         Trust your instincts. In spite of a lifetime of religious faith, I have come to
          believe that God did not cause me to have ALS, and in fact is as saddened
          by the bad things that happen to people as we are. I also am confident
          that God is with us in all of these things just as he/she/it has been with
          millions of others over the centuries.

         This disease can help us develop a sense of gratitude and wonder about
          the mystery of life and death. It has taught me to embrace the difficult
          experiences of life as opportunities instead of as obstacles to a meaningful
          life. I enjoyed "Learning to Fall" by Philip Simmons, a teacher and writer
          who had ALS.

5. Taking care of your caregivers.

         ALS is a social disease; it not only affects us who actually have the
          physical symptoms, it also profoundly affects and changes the lives of
          those around us who love us and care for us. We have a responsibility,
          especially if we want to learn how to adapt and prosper, to make sure we
          don't overtax our caregivers physically and emotionally. We will naturally
          tend to become demanding, frustrated and impatient at times. But the
          more we do this, the less people will want to be around us.

         Make sure your network of care is wide enough to give people some time
          away to recover and recuperate. Avoid the temptation to just pick out one
          or two favorites upon which to rely completely. No one, no matter how
          much they love us can handle the load by themselves.

         You will learn gradually that you can tolerate not getting immediate help
          that you don't really need: tolerating an itch you can't reach.


                        TIPS ON DEALING WITH ALS BY DIANE
                   http://www.living-with-als.org/Diane/
This article is uniquely helpful in providing explanations of physical complications
associated with ALS, e.g. muscle cramps, constipation, swelling of feet and legs
etc., and offering detailed treatment options. Diane, a nurse, has been living with
ALS for many years.
                                            36
 As someone quite amazed to find herself in her
 17th year of ALS and still busily, happily, and
 contentedly engaged in living, I have reached the
 point where I find myself saying "If I'd known I      Dress for success:
 was going to live this long, I would have taken       Toileting using a lift.
 better care of myself!"                               ALS Inservice for Nursing
 For that reason, the main focus of this site is on    Staff:
 dealing with some of the medical complications        Read it or download it and
 we face as a result of ALS. All too often these       pass it on.
 things are inadequately addressed because the         Swelling of feet and legs:
 expectation is that we will not be around long        Why it happens and how to
 enough to worry about "long term" problems.           minimize it.
 These are problems that can and must be               Constipation:
 minimized in order to assure a good quality of life   Prevention and treatment
 even if that life is short. In addition, I believe    tips.
 several factors are going to extend the life of ALS   Osteoporosis and Calcium
 patients in years to come: The development of         in ALS:
 medications to slow progression. Continued            Why osteoporosis is
 improvements in supportive care (nutrition,           "different" in patients with
 respiratory support etc.)                             neuromuscular disease.
 Computer aided communication and                      BiPAP:
 environmental control equipment will greatly          A non-life support breathing
 improve the quality of life for ALS patients who      assistance device.
 opt for ventilation. As a result more of us will      Muscle Spasms --
 take that option and live for many more years.        Cramping and Spasticity
 There are also sections with practical tips for       Which is it and how can it be
 dealing with some of the basic problems               treated?
 presented by immobility such as traveling, and        Travel Tips:
 more sections to be added.                            Some things I have learned
                                                       while traveling.




Another aspect of coping is knowing about assistive devices that can help
compensate for weakened capacities. At http://living-with-als.org/
You can find reviews of such devices, as can be viewed on the homepage:




                                         37
Bathroom
Bedroom
Call Systems         Many of the questions on the living-with-als group concern
Clothing             the equipment needed to deal with disability. This section of
Computer             our website was set up to help people with ALS in their
Eating/Drinking      search for that equipment. Unlike other sites that provide a
Entertainment        list of links to retailers and manufacturers, these pages are
Mobility             reviews of specific brands written by people who have
Respiratory          purchased or tried them. The members of the living-with-als
Speech               group hope this will help others find the best possible
&Communication       equipment to keep them living-well-with-als.
Travel
Miscellaneous




Computer Desk        Have you designed, built, or adapted something that makes
                     living with ALS easier? Share your creative genius in the Do
                     It Yourself (DIY) section.




PEG Tubes            ALS repeatedly presents challenges that leave us stranded in
Buying a Van         unfamiliar territory. Dealing with doctors, bureaucratic red
Buying a             tape, purchasing expensive equipment without knowing what
Wheelchair           options are really needed, picking our way through a financial
Hiring a Caregiver   minefield, as well as adjusting to disability is all new and
                     frustrating. These Tip Sheets are intended to be a source of
                     practical advice from the real experts -- PALS and CALS who
                     have been there, done that, and are wearing the T- shirt that
                     says "I wish I had known..."




                                        38
Bathroom Design
#1

Bathroom Design       Few homes have been built with wheelchair accessibility in
#2                    mind, so ALS often requires some degree of remodeling.
                      Share your remodeling project with others here! Whether you
Accessible Half-      want to share details such as floor plans, before and after,
Bath                  tips and tricks, advice on getting the job done, or just show
                      off some pictures of the finished product, we'd love to have
                      your input.




                                   Chapter 3A

                         ESPECIALLY FOR CALS
CALS go through the same psychological stages as their PALS and, in addition, have
the added responsibilities of caring for the needs of their loved one, taking on
financial burdens and extra chores around the home. It can be overwhelming and
CALS are always vulnerable to exhaustion and burn out. The following articles
convey the strains felt by loving CALS, how to cope and how to take care of one’s
own needs.



                                      My Story
                                      By Trish

My name is Trish Wilson and in my lifetime, have had many titles to my name,
some being: sister, friend, girlfriend, wife, mom and now my newest title, CALS or
for you not familiar with this new title, Caregiver of a person with ALS. Yep, Lou
Gehrig’s disease.

Never in my wildest dreams did I ever imagine that this would be a title I would
have in my resume. When my wonderful husband Mike and I began searching for a
diagnosis to a problem he was having with his speech, we had no idea what this
search would lead to. We began as most of you will, with a simple visit to his family
doctor. From there we were sent without diagnosis to a neurologist due to his
tongue, speech and throat problems all along believing he had some growth in this
throat that was tying up his nerves in his mouth and neck.. Diagnosis' were flying
from friends and family only to make me a nervous wreck but having no affect on
my husband still believing it was some kind of growth that we could have removed
and move along with our lives. As we were put through an array of testing, none of
                                         39
which we were told why they were being done, I became more and more nervous
every time they told me, "all of his tests are fine". I knew in my gut he wasn't fine
and wanted them to find SOMETHING wrong. I know, it sounds insane, please find
something wrong with my husband. I just wanted something to be found so we
could "fix it" and get back to normal.

Needless to say, after our months of testing, two months to be exact which I now
find is a very fast time for diagnosis, the verdict was, "I think we are dealing with
Lou Gehrig’s Disease" were the words from our neurologists mouth. I, of course,
thought the man was a quack and after the initial shock, thought, I'll take this into
my own hands. If this doctor thinks Mike has ALS, I'll show him. I'll go to an ALS
specialist and prove he has no idea what he is talking about. So, we did. We found
the best specialist in Arizona only to discover once they heard Mike was having
swallowing problems, had lost over 35 pounds, felt paralysis in his tongue, they
rushed us in to see the doctor. Well, my feeling of "that doctor was a quack" was
becoming a nightmare. After seeing the ALS specialist the very next day, it was
confirmed. Mike has ALS. He was now a PALS and I was now a CALS.

Mike and I both have been through an array of emotions from extreme sadness, to
denial, which comes often, to acceptance. We have not been through the anger
simply because we do have an incredibly strong faith and believe God has chosen
our path and this is a path we have to live out with dignity. It is my husband that
shows me how to deal with this and it is my husband who is my hero for taking this
on in such a brave and unique way. Don't get me wrong, we both dream of the
days where "this can't be real" but for the most part, we are LIVING with ALS and
plan to continue doing this and embracing life for as long as God will give us. ALS is
not a death sentence, just a new way to appreciate your life.



                                     CALS TO CALS
                                        By Erin

Speaking CALS to CALS I want you to know you have every right to feel the way
you do. You wouldn't be human if you didn't. Newly married or long time
honeymooner's we all feel the loss, the frustration, the anger, the loneliness.
You will go in and out of all the above emotions. It is natural; it is just the way it is.
I have many years with my precious husband. But his progression was so fast we
didn't have one, two, or more years to come to grips with ALS. If he could only do
an nth of a fraction that some of our long time PALS here do, my husband and I
would have the world.

So CALS, cry if you want to. Be mad, frustrated. Let those feelings happen but then
go look into your loved ones face, take their face into your hands and tell them "I
Love You". Everyday do that. After a while more love and new memories will
happen. You will always have the gamut of emotions, sometimes worse than other
times. But you will have what time is given to you on this earth with each other.
                                            40
One thing for sure, you will learn the depths of love and compassion.

The emotional roller coaster can't be described. The emotions and stress, the loss
of living our day to day lives as we both knew it, as our children knew it, is over.
Some PALS with a slow progression have lived a good life for years.

Each CALS goes through a very isolated gamut of feelings and feels alone at times.
We could each write our own book and many of us have website's and blogs to
release our feelings, our progression, our journey. These sites and this site, "Living
with ALS" are the greatest help there is. Take it from me. My husband’s progression
was so fast we didn't have time to realize what was happening. It wasn't until he
finally reached a plateau that we could learn about this thing called ALS.
I never met anyone in an ALS group meeting that was at the stage of my husband.
No help there. It was early on and I needed answers, I needed help. I would write
to the ALS Digest and never get any answers. Very disappointing! It wasn't until I
discovered the "Living with ALS" site that I began to get answers and discovered
the most wonderful and compassionate people in the same boat as us. What a base
of humanity this site is to find this place with PALS and CALS that know, that
understand, that can cry with you, make you laugh with joy, allow you to express
the love, the sorrow, the frustrations, the unknown future. We all do this together.
I love you all.
Erin CALS to Jeff



                      FROM ALSA’S INTERVIEW WITH SANDY

You and Bob continue to enjoy vacations. What kind of preparation is needed
before, during and after travel with your husband?

Travel requires a lot of planning to be successful. At each stage of Bob's illness, we
have traveled, and the challenges increase as the illness progresses. However, the
rewards are worth it! Initially we just needed a wheelchair to get us through
airports and a roomier more comfortable car to rent at our destination. Now, we
need a wheelchair accessible room and bathroom with guaranteed access to all
public areas (make phone calls, and double/triple check!) We need to be sure that
the restaurants in the area have food Bob can eat comfortably or we need a
refrigerator so we can bring our own. We don't travel by air anymore - too many
hassles with his power wheelchair being damaged or mishandled, but we do have a
van that we are comfortable traveling in. We had an easy-lock device installed to
make tie downs fast and easy, I pack a cooler with pureed foods for him, lots of
water and syringes. Bob's computer goes on his chair up front with me, a good map
and a guidebook of accessible trails and we are off. I have to remember to pack the
charger for his chair, toilet necessities, pillows, extra clothes (he gets cold),a
blender, all his medications/vitamins, emergency communication device(alphabet
board) ,etc, and a smile. We have been very lucky and have found that getting
                                          41
away even for 2 days gives us both a change of scenery and renews our strength.
We have seen some gorgeous mountain trails that are wheelchair friendly! Once we
get back home it is important to give Bob a lot of down time in a comfortable chair,
because one of the drawbacks of car travel is he is confined to his wheelchair all the
time.

How has Bob's diagnosis of ALS changed your life?

In every way. It has narrowed the focus of life to its essentials - love and respect,
and has deepened our love and commitment to each other. It also has me always
alert (sleeping is a challenge), and trying to care for the details of someone else's
life as well as my own is tough sometimes. With each change in Bob's condition,
using the wheelchair, having to feed him etc., we have grieved the loss and
struggled to handle it. I am, however, truly grateful for this time we have together,
and am amazed at the grace with which he makes each adaptation. No matter how
it has changed my life - his has changed a million times more!

What does the word "Caregiver" mean to you?

For me, it is a lot of responsibility with a lot of rewards. It is a chance to outwardly
express my respect and love for my husband. When hiring outside help I ask for
kindness, attentiveness, gentleness and respect for Bob and his changing needs.
Knowing that Bob's mind is functioning at top speed, even though his body doesn't,
is a challenge for some people. I need people who have the heart and inclination to
get to know this wonderful man.

As a primary caregiver, it is often a challenge to maintain facets of your own
personal life. How do you maintain a sense of balance in your life?

Well, I didn't, initially. But now, we have hired outside help (no help from the
insurance unfortunately) and I have re-established my friendships and work
associations. Not knowing how long we have together has made me reluctant to
miss a moment, but having help 5 days a week, 8 hours a day, makes the 16 hours
a day I am Bob's caregiver now have more balance. I also realized early on that I
would need guidance and I continue to see a counselor to help me deal with the
incredible loss and grief we experience daily. I try to get a massage at least twice a
month too!



                     LETTER FROM LINDA ALLEN

Linda is a former CALS and current Program Manager for Extra Hands for ALS. In
this letter she describes the challenges and rewards of long distance travel with her
husband, which personifies the idea of living fully with ALS, and also discusses the
innovative Extra Hands program, which links young people with PALS and their
families. Linda has given her personal email address and is willing to share her
                                           42
knowledge about travel. Also check out the Extra Hands web site for a moving
description of the Program and its origins.
http://www.extrahands.org/
linallen@swbell.net (email) and Linda@extrahands.org

My husband Marshall was dx. Oct 31, 1996 at the age of 54 and earned his wings
on Oct.27, 2000. You are right when you say, ―do all the things that you have
planned on doing as soon after dx‖. We decided early on that we were going to
continue to live our lives despite ALS. We traveled by air, ship, bus, train, van,
with the Permobile wheelchair.(Europe AFOs), US and the Caribbean with
wheelchair), we went to restaurants, the theatre, sporting events, to visit
grandchildren etc. We learned to expect there would be road blocks a long the way
but we believed that we could navigate around them. We had some funny stories
surrounding our adventures, others that brought us to tears; times when we
educated management/housekeeping staff/ about things they could do to make
their establishments more handicap accessible, and coming up with innovative ideas
to solve a problem when we could not find a resource/solution for. Was it easy ―no
it was not‖ was it worth it…you bet! I have so many wonderful memories because
we decided to continue to live life and so do our children, his two sisters/brother-in-
laws, my family and friends.

I promised Marshall that after he was gone that I would continue in the fight
against ALS until there was a cure. I am keeping that promise by working with
Extra Hands for ALS. I hope we can reach all our PALS/CALS in every area in every
state with this program. What better way of spreading the word about ALS than
through young people who will be our doctors, researchers, lawyers,
congressmen/women, etc. ALS families have the opportunity to teach these young
people about ALS and learn about the disease first hand. The ―extra hands‖ do
household chores, yard work, playing with the children, providing company to the
PALS, whatever the ALS family needs done that will take some of the burden off the
shoulders of the caregiver. Instead of doing what needs to be done the caregiver
can read, catch up on phone calls, work in their shop, work on a hobby, spend
quality time with the family while the students are working etc. These students
learn so many life lessons that they would never learn if they had not been involved
with an ALS family. Some PALS/CALS have had such an influence in the lives of
the students that some have decided to take up the same career as their PALS or
CAL, or by learning about ALS have decided to become a doctor, physical therapist,
speech pathologist etc. Also these kids let their families/friends know what they are
doing and teach them about ALS. The family members tell other family members,
colleagues, neighbors about what their kids are doing….more Awareness of ALS.
It is my hope that we can find teams of individual volunteers that would like to get
involved and start this program in their area. It takes a group of interested people,
ALS families that will use the service and a source in the community that will help
to fund the program.




                                          43
                         TEN TIPS FOR FAMILY CAREGIVERS

1. Choose to take charge of your life, and don't let your loved one's illness or
disability always take center stage.

2. Remember to be good to yourself. Love, honor and value yourself. You're doing
a very hard job and you deserve some quality time, just for you.

3. Watch out for signs of depression, and don't delay in getting professional help
when you need it.

4. When people offer to help, accept the offer and suggest specific things that they
can do.

5. Educate yourself about your loved one's condition. Information is empowering.

6. There's a difference between caring and doing. Be open to technologies and
ideas that promote your loved one's independence.

7. Trust your instincts, most of the time they'll lead you in the right direction.

8. Grieve for your losses, and then allow yourself to dream new dreams.

9. Stand up for your rights as a caregiver and a citizen, especially when dealing
with public agencies.

10. Seek support from other caregivers. There is great strength in knowing you are
not alone.


                                    CHAPTER 4

            MAJOR ORGANIZATIONS AND WEBSITES
The first website to look at is the Living with ALS group and the link to join is:
http://health.groups.yahoo.com/group/living-with-als/messages

This forum has members who are exclusively PALS and CALS and who range from
newbies to 20 year veterans. Posts cover a wide array of topics relevant to ALS,
e.g. coping strategies, personal issues/problems, symptom control, Medicare
coverage, equipment, just letting off steam, etc. Really, anything at all that involves
ALS. Practical and helpful information is offered, often more useful than what
professionals can provide. Members are enormously supportive, caring, wise and
knowledgeable. Many friendships are formed between members. Examples of a
page of posts are given below:

                                           44
     Subject                                                         Author              Date
32205Re: burning feet                                                Danny Dandignac     Oct 10, 2005
     Are you taking any kind of blood thinner? Have you had a        dankeltex           10:32 am
     doppler study done? I...
32206Re: psychological impact                                        COOKIEDD@...        Oct 10, 2005
     I am sorry Fern that more people are not coming to see you.     cookiedd2003        10:33 am
     When I was told I ...
32207Re: Moms in the hospital again.                                 Mr. and Mrs. Travis Oct 10, 2005
     she has no gall bladder, no appendix, no uterus, etc. they      S...                10:34 am
     have had to give her...                                         woman_revived

32208Re: Nursing home                                                Sherry              Oct 10, 2005
     Thom, Fern and others Here is the starting page on starting     sketzbeau           12:41 pm
     a search and how...
32209Re: new pulse ox needed                                         Sherry              Oct 10, 2005
     Linda I paid $199 for mine. I wouldn't pay any less.            sketzbeau           12:41 pm
     http://www.savelives.com/...
32210Re: Heart Race problem                                          Sherry              Oct 10, 2005
     Danny You state the oxygen sat rate isn't affected by the       sketzbeau           12:43 pm
     BiPAP. Here is a...
32211Re: One Person Home Care                                        Jeff Lester         Oct 10, 2005
     Jim, Our stories are amazingly similar including the size       ragingbear52        3:06 pm
     differential and the ...
32212Re: BiPAP Mark & Larry                                          Edith               Oct 10, 2005
     Dear Lisa, I don't know if anyone else has mentioned this,      wisecom888          3:30 pm
     but is it possible...
32213Re: One Person Home Care                                        Randy Roberts       Oct 10, 2005
     Jim, I like your innovative approach and determination. Can     luckpenny5413       4:35 pm
     you explain what...
32214Re: Crazy Week                                                  luckymomals         Oct 10, 2005
     ... of a ... say ... chair ... I know Susan, i wanted to hide                       6:57 pm
     LOL! Things are...
32215Re: speech                                                      luckymomals         Oct 10, 2005
                                                                                         7:00 pm
32216(No subject)                                                     murrza@...         Oct 10, 2005
     I was just wondering if anybody has a problem with waking murrza                    7:01 pm
     up and the covers ...
32217Re: Nursing home                                                 abe1132            Oct 10, 2005
     A good place to find your local resources for possibly living at                    7:40 pm
     home is your...
32218Re: One Person Home Care                                         Jim                Oct 10, 2005
     Hi Randy, I was referring to a system with a overhead            pigiron308         9:26 pm
     hanging container...
32219peg tube stopped thanks                                          Debbie Bumgarner   Oct 10, 2005
     Thanks to all who answered my email. My hubby is calling         djbummer106        9:54 pm
     the gastro doc ...
32220Re: One Person Home Care                                         Susan              Oct 10, 2005
     Allison, Jim and Jeff, THANK you for sharing your stories with staplesprw           9:57 pm
     us on this...
32221Re: Nursing Home vs. In-home Care                                STOPALS@...        Oct 11, 2005
     Hi all, I have read a few of the postings about the dilemma stopingals              2:18 pm
     about care at...
32222comfort curve                                                    Sherry             Oct 11, 2005
     I need to hear more feedback on the Comfort Curve mask. sketzbeau                   2:22 pm
     Hospice won't pay for...
32223Flu Shots for People with ALS                                    abe1132            Oct 11, 2005

                                                45
     This is to remind PALS (people with ALS) it's time for your                      5:15 pm
     annual flu shot....
32224Clinic Trial                                                    COOKIEDD@...     Oct 11, 2005
     I went to my ALS clinic on Monday. They gave me my FVC          cookiedd2003     6:31 pm
     breathing test and they...
32225Re: comfort curve                                               Randy Roberts    Oct 11, 2005
     Sherry, When I first got the Comfort Curve, I wore it only in   luckpenny5413    6:33 pm
     bed with my...
32226Re: re [living-with-als] vision                                 almanna@...      Oct 11, 2005
     On Thu, 8 Sep 2005 14:22:19 -0700 (PDT) Erin Smith              mannafan100      8:17 pm
     <erinzinn5@...> ... ...
32227Re: Friends ~ Where Are They?                                   almanna@...      Oct 11, 2005
     Dear Sue, I can relate to that. Hang in there. God will send    mannafan100      8:17 pm
     new angels. Andi...
32228Re: I'm new here                                                almanna@...      Oct 11, 2005
     welcome Connie! Andi ... On Wed, 07 Sep 2005 06:57:09 -         mannafan100      8:17 pm
     0000 "Connie ODonnell"...
32229Re: comfort curve                                               Sherry           Oct 11, 2005
     Randy Thanks so much. I only have my bed on a partial           sketzbeau        8:18 pm
     turn. I couldn't handle...
32230ALS Registry Act Introduced in U.S. House of                    lou_gehrig_054   Oct 11, 2005
     Representatives                                                                  8:19 pm
     2005 Advocacy Update October 11, 2005 ALS Registry Act
     Introduced in U.S. House...
32231Beds that turn you                                              netravelingman   Oct 12, 2005
     My name is Bill and this is my first post. I have been                           9:04 am
     listening in for about...
32232Re: Nursing Home vs. In-home Care                               rovall@...       Oct 12, 2005
     Does your ride for life support your state only? In Calif, I    maggieals        9:05 am
     only get 1500 ...
32233Re: Friends ~ Where Are They?                                   COOKIEDD@...     Oct 12, 2005
     Dear Sue, Sorry to hear that John's Mom and sister haven't      cookiedd2003     10:00 am
     contacted you. It's...

The reader just clicks on the first few lines of the post to get the complete post.
You can use a search feature to get back posts on a subject of special interest. This
site provides a window into the world of ALS and can be inspiring, touching,
informative, wise and loving. There is also a chat room led by member of the forum
and can be accessed at: http://www.mdausa.org/chat/calendar.html#lals

Locate the Living with ALS chat and sign in as a visitor. Chats are held 2-5 pm on
Sundays, 3-6 pm and 9-11 pm on Mondays and 7-10 pm Wednesdays. All times
listed are Central time. Transcripts of past chats are on file.

Another ALS peer forum, Brain Talk Communities, is also quite good. Its strength
lies in its many posts on current research in the field and its section on personal
experiences with different treatments. The link is:
 http://brain.hastypastry.net/forums/forumdisplay.php?f=82


The ALS Association (ALSA) is the only national not-for-profit health organization
dedicated solely to the fight against ALS. ALSA covers all the bases - research,

                                                46
patient and community services, public education, and advocacy - in providing help
and hope to those facing the disease. The mission of The ALS Association (ALSA) is
to find a cure for and improve living with amyotrophic lateral sclerosis. Its
website is chock full of information in every area related to ALS. The link is:
http://www.alsa.org/default.cfm?CFID=897541&CFTOKEN=9724212

The home page looks like this (below is a photo you can’t click on it):




As you click on the blue headings, subtopics pop up on every aspect of ALS. For
comprehensive information on any or all areas related to ALS, this should be your
first stop. The amount of information is awesome and can be overwhelming at first,
but will become easier with practice. Here is a sample page meant for new PALS
and CALS:


Newly Diagnosed Patients:

      Will Hubben’s Tips for Newly Diagnosed Patients



 ―The Muscular Dystrophy Association is a voluntary health agency- a dedicated
partnership between scientists and concerned citizens aimed at conquering

                                          47
neuromuscular diseases….MDA combats neuromuscular diseases through programs
of worldwide research, comprehensive medical and community services, and far-
reaching professional and public health education.‖ MDA has an ALS division
whose website is very informative. It provides research updates, a newsletter,
interesting articles and very useful information. It can be reached at:
http://als.mdausa.org/

As organizations, there is much overlap between the two. Both offer funds for
research and patient services, such as advocacy and support groups.MDA offers
funds to help pay for some or all of the cost of certain medical equipment, such as
wheelchairs and seat cushions, computers with speech synthesizers, etc. Local
offices of both ALSA and MDA have loan closets from which you can borrow durable
medical equipment of all sorts, including some your insurance will not cover.
Contact your local offices of both ALSA and MDA, which you can locate on their
websites, for more information. MDA has more dollars for research and
services/DME, while ALSA focuses more on advocacy at the national level.

MDA’s ALS home page looks like this: (also a photo only, not a live web page):




The ALS Therapy Development Foundation is a nonprofit biotechnology company
discovering treatments for patients alive today.

                                        48
Their laboratory, the leading drug discovery program for ALS, bridges a critical
research gap. In-house expertise translates research into potential drug candidates
by screening drugs in the SOD1 mouse model of ALS.
Their scientific collaborations are designed to bring the most promising leads closer
to patient use. ALS-TDF shares emerging knowledge on the disease with patients,
physicians, and researchers as quickly and comprehensively as possible. Their
unique approach accelerates drug development for ALS.

In addition, ALS-TDF offers a forum for discussion of research issues. The link is:
 http://www.als.net/forum/

Ride for Life is an organization directed by a PALS that raises money for research
and patient services from various events, including their ―Ride for Life‖, a yearly
event. Their website is very worthwhile to view. It includes a number of personal
stories, research findings, information on grants and other material of interest to
PALS/CALS. The link is:

The above are a few of my favorites. There are hundreds of interesting and
worthwhile websites that you can choose.


Below is a list of websites that are comprehensive and far reaching:



ALS and Associated Web Sites
                 Compiled By: Steve Weekes ( sweekes99@yahoo.com )




                                              49
 ALS INFORMATION WEB SITES

 ALS SOCIETIES, SUPPORT GROUPS & PUBLICATIONS
      ALS Association Chapter Websites
      ALS Related Societies

 ALS SOCIETIES AROUND THE WORLD
      (Over 40 Countries Represented)

 ALS CHAT ROOMS

 ALS FORUMS and DISCUSSION GROUPS

 CAREGIVER WEBSITES
    Travel Assistance
    Caregiver Chat Rooms, Forums and Discussion Groups

 PALS / CALS - PERSONAL WEBSITES
     International PALS / CALS Personal Web Sites

 MEDICAL SEARCHES, INFORMATION & JOURNALS
    Lyme and ALS Associated Diseases
    Advanced Therapies, Treatments and Research
    General Health Care and Information

 ASSISTIVE AIDS, DEVICES, and SOFTWARE
      General Assistance Sites
     Communication Assistance and Support
     Computer Adaptive Devices & Equipment
     Wheel Chairs, Scooters & Vehicles
     Specific Assistance Sites
     Mind and Spirit Resources

 NATURAL & SUPPLEMENTARY THERAPIES
     Diagnostic Laboratories
     Non-Conventional Doctors, Clinics, Treatments, Therapies & Theories

 PRODUCTS, SUPPLIERS, ETC...




                                           CHAPTER 5

                       BENEFITS AND ENTITLEMENTS

As PALS and CALS, it is vitally important that you learn about your government
benefits: disability payments and Medicare/Medicare. It is also vital that you learn

                                                    50
to deal effectively with your insurance companies. What follows are some articles to
help you get started.

                            SOCIAL SECURITY BENEFITS
                               By Danny Dandignac

                     How do we decide if you are disabled?

SSDI & SSI

The process we use to decide if you are disabled involves five steps. They are:

1. Are you working?
If you are working and your average monthly earnings, after considering the effect
of work incentives, are at the Substantial Gainful Activity (SGA) level, we generally
cannot consider you disabled. If your monthly earnings average less than the SGA
level, (in 2006 that level was $860 per month) we look at your medical condition
using steps 2 through 5.

2. Is your medical condition "severe"?
For us to consider you disabled, your impairment(s) must significantly limit your
ability to do basic work activities, for example walking, sitting, seeing, and
remembering. If it does not, we cannot consider you disabled. If it does, we go to
the next step.

3. Is your medical condition in the list of disabling impairments?
We maintain a Listing of Impairments for each of the major body systems that are
so severe we automatically consider you disabled. If your medical condition(s)
is/are not on the list, we have to decide if it is of equal severity to an impairment
on the list. If it is, we approve your claim. If it is not, we go to the next step.

4. Can you do the work you did previously?
If your medical condition is severe, but not at the same or equal severity as an
impairment on the list, then we must decide if you can do your past relevant work.
If you can, we will deny your claim. If you cannot, we go to the next step.

5. Can you do any other type of work?
If you cannot do your past relevant work, we then see if you are able to do any
other type of work. We consider your age, education, past work experience, and
transferable skills. If you cannot do any other kind of work, we will approve your
claim. If you can, we will deny your claim.


   FURTHER INFORMATION ON SOCIAL SECURITY BENEFITS (TAKEN FROM THE
                            REGULATIONS)
                           By Randy Roberts

                                          51
             Find out if you're eligible for Social Security Benefits

Benefit Eligibility Screening Tool (BEST)

Use our screening tool to help identify all the different Social Security programs for
which you may be eligible.

                                       Overview
We pay disability benefits under two programs: the Social Security disability
insurance program and the Supplemental Security Income (SSI) program.
If you qualify, apply for Social Security disability benefits online.

No matter what kind of disability benefits you are applying for, you must give us
information about your medical, work, and education history to help us decide if
you are disabled.
    Note: If you're an Advocate, Attorney or Third Party Representative, we need
      additional information from you on the application.

Detailed information about each of these programs is available at the following
websites:
   Social Security Disability Program
   Supplemental Security Income Program

You don't have to be disabled or blind to collect Supplemental Security Income
(SSI) if you are 65 or older.

For most people, the medical requirements for disability payments are the same
under both programs, and your disability is determined by the same process. Use
our Disability Planner to find out medical and earnings requirements, what happens
once you’re approved, and more.
Our calculators can give you an estimate of disability benefit amounts based on
your record if you should become disabled. If you get Social Security (not SSI)
disability benefits you possibly could be eligible for Medicare.
SSI is a program run by Social Security that pays monthly checks to the elderly, the
blind and people with disabilities who don't own much or who don't have much
income. If you get SSI, you usually get food stamps and Medicaid, too. Medicaid
helps pay doctor and hospital bills.
While eligibility for Social Security disability is based on prior work under Social
Security, SSI disability payments are made on the basis of financial need.

                Who Can Get Social Security Disability Benefits

Children may qualify for disability benefits under either the Social Security program
or the SSI program.




                                            52
You can get Social Security disability benefits until age 65. When you reach age 65,
your disability benefits automatically convert to retirement benefits, but the amount
remains the same.
Certain members of your family may qualify for benefits on your record. They
include:
    Your spouse who is age 62 or older, or any age if he or she is caring for a
      child of yours who is under age 16 or disabled and also receiving checks.
    Your disabled widow or widower age 50 or older.
    Your unmarried son or daughter, including an adopted child, or, in some
      cases, a stepchild or grandchild. The child must be under age 18 or under age
      19 if in high school full time.
    Your unmarried son or daughter, age 18 or older, if he or she has a disability
      that started before age 22.

If you become the parent of a child (including an adopted child) after you begin
receiving Social Security benefits, be sure to notify us so that we can determine if
the child qualifies for benefits.

For more information about disability benefits for children, ask Social Security for
the booklet, Benefits for Children With Disabilities (Publication No. 05-10026).

Note: The SSI program also pays benefits to needy disabled children under age 18.

                       How to Apply for Disability Benefits

Apply as soon as you become disabled. You can file:
   Online using our Internet Social Security Benefit Application
   By phone, mail or in person at any Social Security office. Call for an
      appointment.

Note: You may receive back benefits from the date you became disabled,
but they're limited to one year before the date you filed for benefits.

                     How to Speed Up Your Disability Claim

It generally takes from 3 to 5 months to process claims for disability benefits. You
can help shorten the process by bringing certain documents with you when you
apply and helping us to get any other medical evidence you need to show you are
disabled. These include:
     Your Social Security number;
     Your birth or baptismal certificate;
     Names, addresses and phone numbers of the doctors, caseworkers, hospitals
      and clinics that took care of you and dates of your visits;
     Names and dosage of all the medicine you take;
     Medical records from your doctors, therapists, caseworkers, hospitals, and
      clinics that you already have in your possession;
     Laboratory and test results;
                                          53
      A summary of where you worked and the kind of work you did; and
      A copy of your most recent W-2 Form (Wage and Tax Statement) or, if you
       are self-employed, your federal tax return for the past year.

You also should be ready to answer other questions we must ask.
Don't delay filing for benefits just because you don't have all the information and
documents you need. The people at the Social Security office will be glad to help
you.

                             Who Can Get SSI Benefits

To get SSI benefits, you must be elderly or blind or have a disability.
    "Elderly" means you are 65 or older.
    "Blind" means you are either totally blind or have very poor eyesight.
      Children, as well as adults, can get benefits because of blindness.
    A disability means you have a physical or mental problem that is expected to
      last at least a year or result in death. Children, as well as adults, can get
      benefits because of disability.

You must live in the U.S. or Northern Mariana Islands and be a U.S. citizen or
national. (Certain non-citizens also may be eligible for SSI. A Social Security
representative can tell you if you qualify.)

Also, the things you own and your income must be below certain amounts.
See our publication on Supplemental Security Income (SSI) (Publication No. 05-
11000) for details about the income limits.

                         How Much You Can Get from SSI

The amount of your benefit depends on where you live.

You could get more if you live in a state that adds to the SSI check. Or you could
get less if you or your family has other money coming in each month. Your living
arrangements also make a difference in whether you can get SSI and the amount
you can get.



                                     MEDICARE
                                 By Andy Etherington


Andy was diagnosed in 2002 and is now trached and vented. He is 45, married and has two
young children. Formerly, he worked in the telecommunications industry, writing software
and working with customers.

I will try to help as much as I can. Note that I am not an expert or a lawyer, just an
affected person with a vested interest in this topic, and have been studying these
                                           54
issues for the last six months. So everything below here is my interpretation of the
issues, and may not be correct.

We will start with some definitions.

Medicare - coverage from the federal government that you are entitled to. There
are 3 Parts to Medicare. Do not confuse the parts of Medicare with the supplement
plans described below, they are vastly different.
Part A covers most hospitalization costs, except for a deductible of
$952 for each hospital stay of less than 61 days. If you stay for more than 60 days,
there is a co-insurance of $238/day for the next 30 days. After 90 days it goes up
to $476/day through day 150. As near as I can tell, no one knows what happens
after day 150. Days 91-150 are referred to as lifetime reserve days, and can only
be used once. Note also that if you are discharged from the hospital after less than
60 days, and are re-admitted again less than 60 days after your initial admission, it
counts as the same hospital stay. You are not charged the deductible again, and
counting of days does not start over. Part A costs you nothing extra, it is funded
through a 1.45% payroll tax on all workers. Part A is not optional, but also costs
nothing.
Part B covers most out of the hospital expenses, usually at the
80%/20% rate. This includes durable medical equipment
(DME) such as ventilators, cough assist machines, etc. this is paid for through
a deduction of $88.50 per month from your SSDI check. This part is optional, but
be careful. If you don't sign up for it when you become eligible, you must wait until
an open enrollment period (usually January 1-February 28). For every year you
are eligible for part B, but decline coverage, you are subject to a 10% penalty
for each year that you declined coverage. This penalty is cumulative, so if you had
declined for 2 years, and then enrolled this year, instead of paying $88.50 per
month, you would pay $106.20 per month. Furthermore, if the Medicare rate goes
up by $10 next year, yours would go up by $12, and would continue to rise 20%
higher than the standard each year. There is an exception to this, however. If you
are covered by an employer sponsored group health plan, either through your
employer or your spouse's, and the person whose coverage you are under is
considered to be an active employee, even if you're not being paid, you have
what is called a special enrollment period. You may enroll in Part B without
penalty any time while you're still covered by the group health plan, or during the
8 months following the loss of that coverage. Note that COBRA coverage is provided
to people whose employment has terminated, and does not provide or extend a
special enrollment period.
Part D – the infamous prescription drug program. This is a program that is
provided through private insurance companies to help with the cost of medicine.
This part is also optional, but again, be careful! If you don't sign up for one by May
15, you are again subject to penalties. This time it is 1% per month for each
month you are eligible, but choose not to participate. There is, once again, an
exception to the penalty. If you have been covered by a prescription plan from
your company or union, or their retirement program (I am interpreting this to
include COBRA), and it provided equivalent or better coverage than Part D, you
                                          55
may join without penalty. Part D plans cost anywhere from $0-$100 per month,
depending on the company. Each plan has it's own formulary, or list of covered
drugs. If you take prescriptions that are not on the formulary, not only do you pay
full price for it, but the amount you pay does not count toward your Part D
deductible or out of pocket maximum. So your best bet is to find a plan that covers
your high cost medications, and pay for the less expensive medicines yourself. I
also dropped rilutek, because it not only expensive, but even on plans with it on the
formulary, because limits are based on the full price of the drugs, it was going to
increase my out of pocket cost by over $1000/year. Since I'm already on a
ventilator, none of my doctors could (or would) give me a recommendation. If you
have trouble understanding the Part D limits, I have another document that
describes it in more detail.
You are eligible for these, but not required to accept them (see above) as of the
date you became eligible for social security
disability. Most people in the social security office will tell you that you're not eligibl
e until 24 months later. These people are wrong! The law was changed three
years ago; the word just hasn't trickled down to the local offices yet. You also
cannot be denied Medicare because of your ALS diagnosis! That is what it's
there for. Find more information at www.medicare.gov

Medicare supplements - standardized plans, labeled A-J, often called Medigap
plans, are offered by private insurance companies to cover the perceived "gaps" in
Medicare coverage. Each company offering a Medicare supplement is allowed to
charge whatever the market will bear, but unlike the prescription program,
supplement policies are required to provide standard coverage. Thus company 1
can provide a plan A supplement (not the same as Part A above) for $59/ month;
while company 2 has a plan A supplement for $150/month. By law, the coverage
provided by both companies must be exactly the same, despite the wide range of
costs. In Texas, I am only guaranteed to be able to obtain a supplement plan A.
when I look at the Medicare web site, I can find at least 20 companies willing to sell
a plan A to me, but only 2 say they would sell me a plan D policy, and they are
such small players that they don't even have web sites! Looking in Indiana, I only
see one company offering a plan A supplement for under 65 (Anthem), and only
one willing to sell a plan B (Bankers Fidelity). There were none selling any other
supplement policies to people under 65. That would imply to me that, with no
competition for either company, prices will be high. It may be worth it though. Here
is my take on what they provide:
Plan A supplement – covers the Part A co-insurance (not the deductible, see
above Part A discussion), and the Part B co-insurance. Part A deductible is $952 for
each hospital stay, but doesn't reset until you've been out for 60 days, so it is
physically impossible to incur more than 6 of these per year. Plan A supplement
also adds 365 additional lifetime reserve days. The Part B co-insurance is the 20%
that Medicare doesn't cover for outpatient things like doctors' visits, outpatient
surgery, and DME. However, there is a comment, in the home health services
section, that says you pay 20% for DME, so I am not sure whether ventilator,
cough assist, etc. would fall in this category or not.

                                            56
Plan B supplement – the only thing the Plan B supplement adds is coverage for
the Part A deductible (that $952 payment for each hospital stay). Everything else
under Plan A supplement is the same under Plan B.
I know that during your initial enrollment period, they are not allowed to "rate" or
reject you based on pre-existing conditions (your ALS, for example). I don't know if
they are allowed to use underwriting (underwriting: using current or past
medical conditions to charge higher rates or reject applicants) if you're
outside your initial enrollment period. I may be finding out soon, I'll let you know.

Medicare Select – really a misnomer, because it applies only to the supplement
policies above, it provides the same coverage as the supplement plan it refers to
(i.e. Medicare Plan A Supplement Select), but only if you use their doctors and
facilities. Kind of like a Medicare HMO. A moot point, because the Medicare site
doesn't list any that will sell a select policy if you're under 65.

Medicare Advantage – you didn't mention these, but I'm sure you've heard of
them. Around here we see ads for these 40 times a day, mostly during business
hours. These plans completely replace Medicare and supplement plans. If you
choose to use a Medicare Advantage plan, you will be unenrolled in Medicare!
Every Medicare Advantage plan has different terms and conditions. It's just like
shopping for any other health insurance. I don't know if any underwriting is
involved, but it was never mentioned during my investigation of the subject. If you
decide to go this way (I decided not to), there is one more thing to know: there are
two kinds of Medicare Advantage programs. Those that cover prescriptions and
those that don't. Consistent with the idea that you are out of the Medicare system if
you enroll in a Medicare Advantage plan, if you choose a Medicare Advantage
plan that does not cover prescriptions, you will not be allowed to join a
prescription only drug plan, and you will not be able to get prescription
coverage!

Medicaid – is a state-run program, primarily intended for low-income patients.
There are generally both income and asset limitations for qualifying. States set their
own limits, so they are different everywhere. I have found anecdotal evidence that
Indiana has their limits set to $1273/ month in income, and $2000 in total assets
(excluding certain items like house, 1 car, etc. for a still living spouse). My SSDI
payment is more than that, so I have not pursued it. There are ways to get within
these limits, but I am not familiar with them. I would recommend that you consult
an attorney that specializes in elder care law for additional information if you're
thinking of going this route.

Risk pool – I don't know if Indiana has this concept, but in Texas we have a Risk
pool for individuals that are unable to get health insurance otherwise. An ALS
diagnosis automatically qualifies me for the pool. There is no underwriting, but they
are required to charge twice the going rate for the opportunity to be in the risk
pool. This policy (again, this is my interpretation of how it works in Texas,
Indiana may be different, or may not even have a Risk pool) pays as secondary to
Medicare. See the discussion below for primary vs. secondary. Another thing to
                                          57
think about is respiratory therapy. Medicare does not cover respiratory therapy
visits. The Risk pool does. That hasn't been enough, in my case, to justify going this
route yet. One more hitch, I cannot join the Risk pool as long as I am eligible for
COBRA, even if I don't take it.

Primary vs. secondary – this is an issue when a patient is covered by 2 different
insurance policies, and is called coordination of benefits, or COB. This can be caused
by numerous things, like the Risk pool example above, or group coverage from a
spouse's employer. The way COB works is that one policy gets the claim first, and
forwards it to the secondary after paying their portion. The secondary then
processes the remainder of the claim according to their policy. There are 2 ways I
have heard this works. The more favorable way, which is what I've experienced, the
primary pays 80%, then the secondary pays the rest, up to 80%. It's strange to
think about, so here is an example:
My respiratory company charges $590/ month for my cough assist machine.
Medicare gets the claim, and allows $400 (all these figures are hypothetical). My
provider accepts assignment, so they are happy with $400. Medicare then pays
80% of it, or $320. Now they pass the claim to my secondary. My provider is out of
network for them, so they would normally only pay 70%, or $280. But Medicare
already paid $320, so the secondary pays $80, and counts themselves lucky,
because they paid $200 less than what they are contractually obligated to pay.
Obviously this is advantageous to me, as I end up paying nothing. The other way
that I have heard, but not experienced, works like this:
Same scenario as before, company bills $590, Medicare allows $400, and pays
$320. But now the secondary gets it. They look at it and say "we would have paid
$280 for this service. Medicare has paid $320, so we don't have to pay anything."
I'm not nearly as happy, because I'm stuck with the $80 remainder, and am paying
premiums for a policy that never seems to pay out. Again, I have not experienced
this happening, but others on this board have reported it. How do companies decide
which is primary? In my case, Medicare became primary because I wasn't being
paid, thus no FICA taxes were being paid. If my coverage had been through my
wife's employer, and she was still having FICA withheld, Medicare would be
secondary. Others have said it has more to do with the number of employees being
greater or less than 100, but I'm more inclined to believe mine, since I heard it
from the COB desks at both plans.

Medicare capped item - One more thing that you may want to know about,
especially if you're thinking about buying your equipment supplier out, is the idea of
Medicare capped items. Many of the things we use are actually rented by Medicare.
After 10 months of renting the equipment you are given a choice to buy it or keep
renting it. If you choose to buy it, Medicare will pay for 2 more months (total of 12
months). Title to the equipment goes to you, and no more payments are due, but
you are responsible for upkeep. If you choose to continue to rent, Medicare will
continue to pay for 5 more months (total of 15 months). Title to the equipment
remains with the equipment supplier, no more payments are due, and the supplier
is responsible for upkeep.

                                          58
Now to the answer that you didn't want, but I'm sure you knew was coming. No one
can make the decision for you. It is highly dependent on your financial position and
your risk tolerance. I would strongly recommend that you talk to a specialist in
elder care law before making a final decision.

I will tell you what my decision was. The gentleman that was here specifically to sell
me a Medicare Advantage plan, told me to stay away from them because they
weren't very good with DME extensive conditions, of which ALS is certainly one. So
I have decided that, when they kick me off COBRA, I am going to immediately
apply for a Medicare Part D plan and a Plan A supplement. Good luck with your
research. If you have any other questions, feel free to ask. Just be forewarned: you
may get another tome like this one!



             MORE ON MEDICARE PART D PRESCRIPTION COVERAGE
                                By Andy


Let me try to summarize it for you. Each state has several companies that offer
Medicare Part D coverage. each of these companies offers several plans, with
different premiums, different deductibles, and different coverage. All this adds up to
an overwhelming amount of information. In Texas I had 48 different plans that I
could choose from.

Every prescription drug plan has a formulary, which lists the drugs they will cover,
and the (up to 4) different prices that they will charge for each drug. There are 4
different levels of support included in each plan:
Deductible The first $250 dollars of drug expenses are paid for out of pocket at full
price. Some plans have no deductible, and start coverage at the next level.
Support       After the deductible is met, drugs can be obtained for either 25% or a
fixed co-payment. Each formulary uses a different base price for each drug, though
formularies within the same plan family tend to use the same price structure
(Humana's prescription drug only plans uses the same prices as the Humana
Medicare Advantage plans with drug coverage). Once you reach $2250 in total drug
costs (what you pay plus what the plan pays), you move to the next level Donut
hole. This is the part that is most confusing. Between the time that you reach
$2250 in total drug costs and when you reach $3600 in out of pocket expenses, you
pay 100% of the drug prices. Did you get that? That means that, between $2250 in
total drug costs and $5100 in total drug costs you pay 100% of your prescription
costs. Still with me? Ok, one more thing.
After you've paid $750 for your prescriptions ($250 deductible plus 25% of the next
$2000), and before you've paid $3600 in out of pocket expenses, you pay full price
for all your medication. That's all the ways I can think of to explain it.
Catastrophic coverage Once you exceed the threshold of the donut hole, you get
catastrophic coverage, under which you pay the greater of $5 ($2 for generics) or

                                          59
5% of the full price.


For complete information on all aspects of Medicare benefits, always go to
http://www.medicare.gov/




                                               CHAPTER 6


                     PARTIPATING IN CLINICAL TRIALS
                                               By Randy Roberts

Clinical trials are formal tests of safety and efficacy of new drugs or procedures.
There are three phases in trials:

1) Safety- to assess if the new compound can be tolerated without major side
effects.
2) Safety and efficacy- involving more subjects, including a placebo group (no
medication) or so called ―control‖ group;
3) Efficacy - The final phase-to determine efficacy using a much larger sample size
and held at multiple sites around the country, always uses a placebo group.

All drugs used in the trials are free of charge. It is important to consider
participating in a trial at an early point in your illness because the studies require
subjects to meet certain criteria, e.g., FVC > 60 or 70 or the ability to walk
unaided, and one never knows how fast one will progress. PALS have to weigh
potential benefits against inconvenience, as the trial location may be many miles
from home. And PALS who volunteer are helping in the quest for a cure. Discuss the
open trials with a neurologist, to help guide your decision. Below is a current list of
trials that are recruiting patients, as of 11/06. Check back at the website below
monthly to get updates. The ALSA and MDA sites also keep updated lists of trials,
so check these, too.




    Home          Search        Listings          Resources       Help   What's New   About
Search results for als [ALL-FIELDS] are shown below.




                                                       60
                                                                   Search-Within-Results   Query Details   Map of locations


                   Include trials that are no longer recruiting
patients.
34 studies were found.
 1.         Recruiting   Pilot-Study of Thalidomide in Amyotrophic Lateral Sclerosis (ALS)
                         Condition: Amyotrophic Lateral Sclerosis (ALS)
 2.         Recruiting   Clinical Trial Ceftriaxone in Subjects With ALS
                         Conditions: Amyotrophic Lateral Sclerosis; ALS
 3.         Recruiting   Amyotrophic Lateral Sclerosis Web Based Patient Care Database:
                         ALSConnection.Org
                         Condition: Amyotrophic Lateral Sclerosis
 4.         Recruiting   Study of Myobloc in the Treatment of Sialorrhea (Drooling) in Patients With
                         Amyotrophic Lateral Sclerosis (ALS)
                         Conditions: Amyotrophic Lateral Sclerosis; Sialorrhea
 5.         Recruiting   Genetic Epidemiology of Familial Amyotrophic Lateral Sclerosis (ALS)
                         Condition: Amyotrophic Lateral Sclerosis
 6.         Recruiting   Amyotrophic Lateral Sclerosis (ALS) Veterans Registry
                         Condition: ALS
 7.         Recruiting   Efficacy and Safety Study of MCI-186 for Treatment of Amyotrophic Lateral
                         Sclerosis (ALS)
                         Condition: Amyotrophic Lateral Sclerosis (ALS)
 8.         Not yet      Clinical Trial of Glatiramer Acetate in Amyotrophic Lateral Sclerosis (ALS)
            recruiting   Condition: Amyotrophic Lateral Sclerosis
 9.         Recruiting   Phase II Study Using Thalidomide for the Treatment of ALS
                         Conditions: Amyotrophic Lateral Sclerosis; ALS
10.         Recruiting   Early Treatment of Amyotrophic Lateral Sclerosis (ALS) With Nutrition and Non-
                         Invasive Positive Pressure Ventilation (NIPPV)
                         Condition: Amyotrophic Lateral Sclerosis
11.         Recruiting   Noninvasive Ventilation in ALS Patients With Mild Respiratory Involvement
                         Condition: Amyotrophic Lateral Sclerosis
12.         Not yet      Clinical Trial of Vitamin E to Treat Muscular Cramps in Patients With ALS
            recruiting   Condition: Amyotrophic Lateral Sclerosis
13.         Recruiting   Trial of Sodium Valproate in Amyotrophic Lateral Sclerosis
                         Condition: Amyotrophic Lateral Sclerosis
14.         Recruiting   Mitochondrial Functions and Oxidative Stress in ALS Patients
                         Condition: Amyotrophic Lateral Sclerosis
15.         Recruiting   Frontotemporal Dementia and Amyotrophic Lateral Sclerosis
                         Conditions: Frontotemporal Dementia; Amyotrophic Lateral Sclerosis; Dementia
16.         Recruiting   The Effect of Intensive Controlled Exercise in the Early Stages of Amyotrophic
                         Lateral Sclerosis
                         Condition: Amyotrophic Lateral Sclerosis
17.         Recruiting   Combination Therapy Selection Trial in Amyotrophic Lateral Sclerosis

                                                              61
                   Condition: Amyotrophic Lateral Sclerosis
18.   Recruiting   R(+) Pramipexole in Early Amyotrophic Lateral Sclerosis
                   Condition: Amyotrophic Lateral Sclerosis
19.   Recruiting   Familial Amyotrophic Lateral Sclerosis: A Preliminary Study to Identify Subjects
                   Who Might Be Willing to Participate in a Trial
                   Condition: Amyotrophic Lateral Sclerosis
20.   Recruiting   Memantine for Disability in Amyotrophic Lateral Sclerosis (MEDALS)
                   Condition: Amyotrophic Lateral Sclerosis
21.   Recruiting   Confirmation of Self-Reported Amyotrophic Lateral Sclerosis Cases in the AARP-
                   Diet and Health Study
                   Condition: Amyotrophic Lateral Sclerosis
22.   Recruiting   Amyotrophic Lateral Sclerosis and Frontotemporal Dementia
                   Conditions: Frontotemporal Dementia; Lateral Amyotrophic Sclerosis
23.   Recruiting   Brain Function in Primary Lateral Sclerosis and Amyotrophic Lateral Sclerosis
                   Condition: Cerebral Cortex Dysfunction
24.   Recruiting   Levetiracetam for Cramps, Spasticity and Neuroprotection in Motor Neuron
                   Disease
                   Conditions: Motor Neuron Disease; Amyotrophic Lateral Sclerosis; Primary
                   Lateral Sclerosis; Progressive Muscular Atrophy
25.   Recruiting   Collection of Blood Samples for DNA in Motor Neuron Disease
                   Condition: Motor Neuron Diseases
26.   Recruiting   A Study of the Expression of Nogo and Reticulon Genes in Skeletal Muscle of
                   Patients With Amyotrophic Lateral Sclerosis.
                   Condition: Amyotropic Lateral Sclerosis
27.   Recruiting   Influence of G-CSF and EPO on Associative Learning and Motor Skills
                   Conditions: Chronic Stroke; Amyotrophic Lateral Sclerosis
28.   Recruiting   Preterm Fetal Growth Restriction and Developmental Care
                   Condition: Preterm Birth
29.   Recruiting   Adolescents Born Preterm
                   Condition: Preterm Birth
30.   Recruiting   Riluzole to Treat Depression in Bipolar Disorder
                   Condition: Bipolar Disorder
31.   Recruiting   Treatment of Refractory Schizophrenia With Riluzole
                   Conditions: Schizophrenia; Schizoaffective
32.   Recruiting   Safety Study of AVP-923 in the Treatment of IEED (Involuntary Emotional
                   Expression Disorder) Also Known as Pseudobulbar Affect (Episodes of
                   Uncontrolled Crying and/or Laughter)
                   Conditions: Alzheimer's Disease; Stroke; Parkinson's Disease; Traumatic Brain
                   Injury




                                             Chapter 7

                                                  62
                                  ADVOCACY

Over the course of the illness, many PALS become interested in advocating. Some
become so engrossed that it becomes a meaningful and satisfying focus of their
lives. The following articles provide you with comprehensive information on
advocacy and the tools to get involved.

                                    Advocacy!
                                 By Catherine Wolf

Catherine Wolf was diagnosed with ALS in September, 1997 at age 50. Cathy had a
tracheostomy in 2001 and is now completely ventilator dependent. She faces ALS
with optimism, a fiercely independent nature, and an occasional tear. Before ALS,
she worked for IBM, and was an avid runner and dancer. She has two adult
daughters and is the enthusiastic grandmother of one grandson. Cathy lives with
her husband Joel in Katonah, NY.

Introduction
What is advocacy? The dictionary defines advocacy as ―active support for a cause.―
Most people feel better when they are doing something. We feel that our lives have
purpose. Although there is not yet a cure for ALS, PALS typically feel good when
they are involved in advocacy. As a newly diagnosed PALS, you have the physical
capability to do more than your less recently diagnosed fellow PALS. So get
involved! This chapter describes some of the ways you can become involved in
advocacy.

What are your skills and interests?
When contemplating how to get involved, assess your skills. Were you a
bookkeeper? Perhaps you can volunteer to keep the books for an ALS fund raiser,
or help a fellow PALS organize his/her finances. Were you a nurse? Now is the time
to educate yourself about ALS so you can explain the often mystifying jargon
doctors sometimes use about ALS. In my case, I had spent many years as a
usability expert in software design. I made sure when I was still working that the
software I worked on was usable by people with motor disabilities. And when I
encountered programs made by my company that were difficult for me to use, I
suggested ways to improve them. Perhaps most important, I made suggestions for
improving the assistive technology I used. Thus, I used my work skills to advocate
for all PALS.

Altogether your body will lose physical function, there is no limit to what your mind
can do, especially when armed with a computer. Kyle Hahn, a musician, started the
ALS March of Faces, an awareness and advocacy organization. Will Hubben
compiled and distributed ALS research. David Jayne, stricken with ALS at 27,
started living-with-ALS and started a group to agitate for change in the Medicare
laws regarding homebound people. You may be thinking, ―I don’t have the
                                         63
personality for a major undertaking. ― Advocacy takes many forms, large and small.
For example, I shared what I learned from my successful insurance battle with the
MDA ALS News magazine.

Sometimes ALS can wake up talents you didn’t know you had. In my case, it was
poetry. I started writing poetry about my reaction to ALS, as well as political poetry
and sending it to friends. One friend with connections finagled an article about me,
ALS, and my political poetry in my county’s section of the New York Times. That
article described ALS, and I’m sure helped raise awareness of ALS. Another article
in Neurology Now included some of my ALS poetry. The doctor who wrote it said my
poems gave her a new appreciation of the patient’s perspective. While I can’t speak
for all PALS, I know that there are many who share my optimistic perspective. Since
the magazine is distributed to every neurology office, I hope my upbeat poems will
be helpful to people afflicted with neurological diseases. I use these examples from
my life, not to toot my own horn, but because I know them and to show one little
person can make a difference.

Advocating for yourself
Sooner or later, you will find yourself in need of services your insurance company
denies. Don’t take no for an answer! Most insurance companies know that many
people will not appeal a denied claim. Have your doctor write a letter of medical
necessity that explains why you need the service. Notes from other health
professionals can also help. Demand that your insurance company gives you a
letter of explanation for the decision, not a cryptic code. Read your policy. Consult
the social worker at your ALS center, or if the stakes are high, hire a lawyer. MDA,
ALSA, or the local bar association can recommend one. Put everything in writing
and send it return receipt requested so you have a paper trail. If you speak to
anyone from your insurance company, get their names and make notes and date
the conversation. You’re not allowed to record the conversation without permission
from the other party. The insurance company is usually your enemy, but sometimes
you can sweet talk someone into giving you more information.

I don’t know much about Medicare or Medicaid. I assume that the same principles
apply to these.

There are, of course, other reasons than insurance for which you might need to
advocate for yourself. Sometimes well-meaning caregivers or family members want
to make decisions for you. Your mind still works, and you should have as much
control over decisions affecting your care as you desire.

Advocating for a fellow PALS
You can put your skills, experience and knowledge to work to help a fellow PALS.
Over the years, I have helped several PALS, mostly by email. I have also written
about what I have learned in my ALS center’s newsletter. Every time you post
something in living-with-ALS you are making a fellow PALS’ life easier. As a newly
diagnosed PALS, you may have the energy and voice to help a more advanced

                                          64
PALS. For example, you might organize a Share the Care group for someone in your
local support group.

Cause advocacy
Advocating for a specific cause can be as easy as forwarding email you receive from
a group supporting that cause to everyone you know. For example, before the
Senate vote on the stem cell research bill in July 2006, I forwarded the United
Spinal Association’s email urging me to contact my senators to vote yes to family
and friends. And I emailed my senators.

Sometimes you have to write your own cause letter. The trick is to make it easy for
your friends to take action. This may include providing talking points, phone
numbers or email addresses. In June 2005 after the House of Representatives
passed the stem cell research bill, I emailed friends to put pressure on those
representatives who voted against it to change their minds. Here is an excerpt from
my email.

Thank you for your help in passing the Stem Cell Research Enhancement Act. The
House of Representatives passed the bill 238-194, with 14 Democrats and 180
Republicans voting against it. The Senate is expected to pass a similar bill soon.
The sponsor of the Senate bill, Republican Arlen Specter, says he has enough votes
to override a presidential veto. Bush said he will veto it when the bill reaches his
desk. He is obviously out of tune with most Americans, since a recent poll indicated
only 28% of the people oppose embryonic stem cell research for therapeutic
purposes. Bush has little to lose by vetoing this bill because he is a second term
president. But the Representatives will have to defend their votes on this issue in
the 2006 elections. It takes a two-thirds majority to override a presidential veto.
Therefore, we should focus our efforts on the representatives who voted against
this bill or who did not vote. To see how your representative and others voted go to
http://www.nytimes.com/2005/05/25/politics/25stem_rollcall.html

For convenience, I am including the text of this article at the end of this email. . if
you know people in states with a large percentage of no votes, please consider
forwarding this to them.

To find out who your representative (or any representative) is and how to contact
him/her go to
http://www.house.gov/writerep/

[roll call vote by state included]

Whether or not you agree with me on stem cell research, the principles of cause
advocacy are the same.
   Be specific about what you want your audience to do.
   Provide information on the topic, perhaps including talking points.
   Provide contact information for the people you want them to contact, or an
     easy way of getting the information.
                                           65
Organization advocacy
There are many groups that raise money for ALS research or services, or raise
awareness of ALS. These include, but are not limited to, Muscular Dystrophy
Association (MDA), ALS Association (ALSA), ALS Therapy Development Foundation
(ALS-TDF), Ride for Life, ALS March of Faces, United Spinal Association, and your
local ALS center. The first two organizations have many local chapters which may
hold fund raising events such as walks, bike rides, dinners and golf outings. Some
other organizations, such as the Stamford, CT Fire Department, raise money for
one of the organizations in the first list. If you want to get involved, there are many
organizations and activities. If you’re not on the mailing list or email list for these
organizations, they will welcome your participation.

Your involvement can be as simple as wearing a blue and white pin striped ribbon,
to participating in an event, being on the organizing committee for an event, or
organizing your own event. Fund raising is a good way to involve family, friends,
colleagues and your employer who often want to do something for you, but don’t
know what. Time for a personal story. I have always been reluctant to ask friends
for contributions. My cousin has been doing the ALSA bike ride in Boston along with
her husband and several co-workers who don’t even know me for several years.
This year they had only raised $350 towards their goal of $750. She asked me to
contact my friends for help. I figured if she could ask people who don’t know me to
ride and contribute, I could certainly ask my friends. The response was
phenomenal. We raised over $2000!

Working on the organizing committee of a major organization, such as MDA, for a
fund raising or an awareness event has the benefit that the organization provides
most of the structure. When I worked on the organizing committee of a local MDA
fund raiser, they provided the solicitation letter, which I personalized.

If you want to organize your own event, it is wise to recruit family and friends to
help. Such events always take more effort than anticipated. Alternatively, if you
know someone who wants to organize an event, you can let her/him be in the
driver’s seat and help as you can. Several years ago, one of my daughters
organized a folk music concert to benefit ALS-TDF and raised about $5000. ALS-
TDF has family funds which are a good way to honor a PALS and track your fund
raising for the organization. See my fund at
http://www.als.net/ffc/familyPage.asp?familyId=72 .Try to attend the event, if
possible. It helps to put a face on ALS

Whatever form your organizational advocacy takes, remember it is much easier to
get businesses to donate goods and services than money. It is not only a donation.
It’s free advertising.

Your life as a model for advocacy
Finally, your advocacy activities can inspire people with and without ALS to become
advocates. Thus, your own advocacy has a multiplier effect.
                                          66
Conclusion
This chapter has described some of the ways you can put your skills and experience
to work to become an advocate for PALS, including yourself. Advocacy can take as
much or little of your time and effort as you desire. The types of advocacy
described here are:
    Advocating for yourself
    Advocating for a fellow PALS
    Cause advocacy
    Organization advocacy
    Your life as a model for advocacy



                         EIGHT RULES TO GET WHAT YOU NEED

                                 By Danny Dandignac

Danny was Dx'd 12/2000. He retired from being a paramedic in 12/2004 after 23 years.
Currently he spends his time co-hosting the MDA
chats that are held 4 days a week and continuing the Will Hubben Research
Digest hosted on the ALSTDF website. He is married with 2 children, ages 12 and 15. He
has brought our attention to a very useful article.

Bob’s friend Jason doesn’t have ALS, but he faced a problem all too familiar to
many who do: an insurance company ruled that equipment he needed was ―not
medically necessary.‖ Sound familiar?

Jason might have started fighting back by talking to his doctor first. His doctor may
be as disagreeable and rushed as Jason pictures him. Moreover, his doctor may
work for the very HMO that turned him down. But his doctor has a professional
stake in preserving Jason’s shoulders—and in seeing that his prescriptions are filled
as written.

When I picked up the phone, Jason sounded desperate. Jason has cerebral palsy
and has always walked by leaning heavily on two canes. As a result of decades of
wear and tear, he developed severe arthritis and rotator-cuff tears in both
shoulders. Most days it’s hard for him to cross the room because of excruciating
pain.

His doctor told him the pain and muscle tears were going to get worse—that
rotator-cuff and shoulder-replacement surgeries were on the horizon—unless he got
a power wheelchair. Although Jason’s doctor had sent the proper paperwork to his
insurance company, a Medicare HMO, the wheelchair was denied because it was
―not medically necessary.‖

―Not medically necessary?‖ Jason screeched into the phone. ―When will it be
medically necessary? When I can’t walk at all?‖
                                        67
Sadly, the answer is yes. But I’m getting ahead of the story. Because Jason’s
speech is hard to understand, he asked me to call the insurance company. In the
process I discovered that there are Eight Simple Rules for getting anything you
need from anyone.

Rule #1: Get Name, Rank, and Phone Number

I called Jason’s insurance company. After spending a turtle’s lifetime on hold, I was
connected to a customer representative. I tried to explain my friend’s circumstance,
but she said she couldn’t talk to me because I wasn’t ―the insured‖ and hung up.

I was massively ticked! Back on the phone, and after another turtle’s lifetime, I was
connected to a different representative. This time I said that I was Jason and wrote
down her name, phone number, and title. All she did was repeat what Jason knew—
that the wheelchair was denied because it was not medically necessary. With an
edge in my voice I asked who made that decision. She told me that she was not
allowed to give out that information. I asked who could. She said that I would have
to speak to her supervisor, Ms. Lemon, and that she would transfer me. Before she
did, I got Ms. Lemon’s phone number—and good thing! I wasn’t transferred; I was
disconnected.

Rule #2: First Do Your Homework

Since it was 5:00 p.m., I decided to do some research first and call Ms. Lemon the
next day. On the Internet I found the Medicare regulation for power-wheelchair
medical necessity.

It turns out that a power chair is considered medically necessary only if you’re ―bed
or chair confined,‖ not Jason’s situation—yet. I then got the name and phone
number of the president of Jason’s insurance company and went to the Web sites
for the Department of Health and the Insurance Commission in Jason’s state to find
out what process insurance companies must follow if they deny medical equipment.
I also decided I would keep dated notes of my phone conversations and take exact
quotes.

Rule #3: An Ally Is Better Than an Adversary

At 9:01 the next morning I called Ms. Lemon. Instead of screaming as I wanted to,
I decided to take a different tack: I started by saying, ―Ms. Lemon, you are the only
one who can help me.‖ I told her that two of her representatives had hung up on
me (hoping a little guilt would soften her up) and explained the situation. She
apologized. I told her I needed to know who had denied the power chair. Pleasant
as you please, she volunteered that she had denied the chair. Aha! I had her!
Victory was mine. My homework had uncovered that this state’s law permits only a
physician to deny medical equipment.



                                         68
When I told her this, she stammered and said she was sure that one of the medical
directors, a physician, had ultimately signed her denial. When I asked for the
medical director’s name and phone number, she said she was not allowed to give
out that information. However, she said she’d transfer me and (you know what’s
coming) I was disconnected.

Rule #4: Go Right to the Top!

It was clear I was getting nowhere talking to the hired help. So my next call was to
the president of the insurance company—let’s call him ―Robert Bucks‖. Of course I
didn’t get Mr. Bucks on the phone; I got one of his personal assistants. Starting
again with ―You are the only one who can help me,‖ I quickly explained the hang-
ups, the denial by a clerical worker, and the refusal to let me talk to the medical
director.

The assistant sounded both shocked and concerned. He apologized and confirmed
that indeed only a medical director can deny a power chair and gave me the name
and number of the medical director assigned to the case.

Rule #5: Be a Name Dropper

I immediately called the medical director’s office and got his secretary. I asked to
speak to the doctor and was told that ―insureds‖ were not allowed to speak to
medical directors and how had I gotten the number? I said that I had just spoken to
―Bob‖ Bucks, and was told to call the doctor directly. Implying that ―my buddy Bob‖
told me to call got me through to the medical director in a flash.

The doctor explained that he had indeed signed the denial based on the Medicare
regulation that required someone to have ―severe weakness‖ in the arms, be unable
to push a manual chair, and be ―bed or chair confined‖ before a power chair could
be approved.

Still speaking as Jason, I told him that my arms might not yet be severely weak,
but that severe shoulder pain prevented me from pushing a manual chair and that
shoulder degeneration would soon make me bed- or chair-confined if I kept on as I
was. With the Medicare regulation in front of me, I then quoted another paragraph
which said that ―a patient who uses a power wheelchair is usually totally non-
ambulatory.‖ I suggested that the word ―usually‖ gave him some leeway, since it
means not everyone who gets a power chair is totally unable to walk.

To my amazement the doctor listened! He agreed the shoulders would just get
worse and that I would eventually be chair or bed confined. ―Tell your doctor to
write a new prescription and an appeal letter explaining that your shoulders are
falling apart, that you can’t push a manual wheelchair and soon won’t be able to
walk,‖ he said. ―I can argue that it would be better to give you the power chair
sooner rather than later and save your shoulders.‖


                                         69
Rule #6: Tell, Don’t Ask

Ecstatic, I called Jason. I explained that his doctor only had to send a prescription,
write a letter, and the power wheelchair was his. But Jason hemmed and hawed. He
said his doctor was very busy and hadn’t liked filling out the insurance forms for the
power chair in the first place. I told Jason he needed to advocate for himself. I told
him he needed not to ask but to tell his doctor—quietly but firmly—that he ―was the
only person who could help‖ and to write that letter. Indeed, Jason’s doctor was not
happy, but write a letter he did.

Within two weeks the power wheelchair was approved. I was king of the world ...
until Jason called me a month later.

Rule #7: Call in the Marines!

Jason told me that he was greeted one morning by a truck driver with a huge box.
Inside was the promised power chair. Jason’s excitement gave way to confusion
and anger when he discovered the wheelchair was twice as wide as he was. I asked
him how this could have happened when he had been fitted for the chair. Jason told
me the delivery was a total surprise because he had never been fitted.

I immediately called the medical director to find out what had gone wrong. The
doctor coolly explained that the insurance company provides only one type of power
wheelchair from only one manufacturer. When I told him the chair had never been
fitted and was too wide, the doctor’s response was as simple as it was final: ―We
had a doctor’s prescription.‖ Click.

The doctor’s answer was not only ridiculous, it smelled way bad. Why would an
insurance company provide only one type of power wheelchair that was drop-
shipped from another state without being fitted?

I called Jason’s state insurance commissioner and was told that insurance
companies cannot provide only one brand of wheelchair, that wheelchairs are
indeed custom items that must be fitted. I was referred to the state department of
health’s office responsible for overseeing HMOs. And I heard the same thing. For
good measure I called the state attorney general’s office. What the insurance
company was doing smelled bad to everybody. And, since this was a Medicare
issue, I called Jason’s congressman too.

Turned out that the insurance company and the wheelchair manufacturer were
under federal investigation for—guess what?—a kickback scheme involving payoffs
by the wheelchair maker to the insurance firm.

I once again called my buddy the medical director. I told him about all the offices I
had just called and—my voice calm and even—explained that everyone believed
that his insurance company was involved in a kickback scheme with the wheelchair
manufacturer that broke bushels of state and federal laws. I told him that it wasn’t

                                          70
my idea to testify against him in court or to speak at a television press conference,
but that I’d do what the attorney general asked if it would get me a usable power
chair.

Rule #8: One White Lie May Be Worth a Thousand Truths

Of course, no one I talked to had mentioned testifying in court or a TV press
conference. But the medical director didn’t know that, and there was no way that
he was going to find out. What was he going to do, call the attorney general and
ask if he was going to be indicted? Which is why I heard the doctor’s voice raise an
octave. ―No, no, no! ―he said. ―You must have misunderstood me.‖

He quickly explained that the brand of wheelchair that was shipped was the
company’s first choice, not the only choice, and that of course every patient’s
wheelchair should be individually fitted. He told me that the insurance company
would arrange for the chair to be returned, that a local vendor would be in contact,
and that any brand of power chair that met my needs would be provided.

True to his word, within a week the offending wheelchair had been removed and
Jason was fitted for a chair that met his needs. Jason and his shoulders are now
happily rolling along.

God Bless Alexander Graham Bell

Since helping Jason, I have told others about ―The Eight Simple Rules‖ and how
they have proved helpful in dealing with everything from refusals by employers to
provide reasonable accommodations under the ADA to reversing denials for Social
Security disability benefits.

The phone can be a powerful weapon. Don’t be afraid to call anyone and everyone
who could possibly help you. State officials, congresspersons, and senators. Elected
officials love to help their constituents (read: voters).

Sometimes, however, the pen can be mightier than the phone. You can file official
complaints under the ADA, state civil rights and consumer laws with your state’s
insurance commissioner and with the attorney general. Ultimately, you may need a
lawyer specializing in disability or consumer issues if it’s time to lock and load and
take the bums to court.

But if you follow ―The Eight Simple Rules‖, you may get what you need without
paperwork or lawsuits by doing your homework, being pleasant but assertive, using
your wits, and using Alexander Graham Bell’s marvelous invention.




                      TIPS AND INFORMATION ON ADVOCACY

                                          71
                                     By David Abell

David was diagnosed with ALS in June 1996. He was 29 and serving in the US Navy
when he was diagnosed. He has adapted to being paralyzed, ventilator dependent,
fed through a feeding tube. His attitude is ―I will never give up.‖ He rarely feels
sad and has discovered numerous, meaningful ways to enrich his life.

Advocacy & Awareness are important in getting funding for research and
care for ALS. Some great advocates groups for ALS are
The March of Faces http://march-of-faces.org/

Project ALS http://projectals.org/

Ride For Life http://www.rideforlife.com/ There are many others but
these are my favorites.
It is up to all of us to raise awareness if possible. When friends
ask if there is anything they can do, ask them to write a letter to
their Congressperson & Senators. (see below) Check the www.ALSA.org
www.MDA.org or NORD http://www.rarediseases.org/ for sample letters
that you can modify for personal info. If you believe in stem cell
research www.stemcellaction.org and http://www.curesnow.org/ have
petitions to sign and sample letters.

Write to your congressperson. It's hard to represent you properly if
the congressperson isn't aware of your feelings.

Select your state or territory and enter your ZIP code. You'll be given
a form that will be sent directly to your representative.

If you want to contact your senator, go here:
http://www.senate.gov/general/contact_information/senators_cfm.cfm

And to contact members of the House, go here:
http://www.house.gov/writerep/

This website has tips on How to write your congressperson.
http://www.protest.net/activists_handbook/write.html

Writing a real letter or fax will not get ignored as easily as Email
but it takes a long time for a response especially since the anthrax
idiot. I do both sometimes.
Anyway, there are some ideas. We can make a difference.



                               Thoughts on Advocacy
                                 By Chuck Hummer
                                           72
Chuck retired as a senior executive with the U.S. Army Corps of Engineers in
Washington, D.C., in 1989, culminating a thirty year career as a government
worker. He was diagnosed with ALS in October 2004, after a three year journey to
determine why he was falling and experiencing slurred speech. He and his wife,
Sandra, live in Pinellas Park, Florida.

Advocacy is defined as the act of pleading or arguing in favor of something, such as
a cause, idea, or policy; active support. How does this apply to ALS? In the
strictest sense, advocacy is often limited to a type of lobbying, or seeking
legislation to provide for some service or rights. In the broadest sense, I take it to
mean speaking out and up to assure public awareness of the disease called ALS.
Without this basic understanding of what ALS is, how it affects those who have
been diagnosed with ALS and the sorry fact that no one knows the cause or causes,
there are no real pharmaceutical therapies to treat the disease, and there is no
cure.

Unless and until we get that message out to the broadest possible audience,
including health care workers, politicians and even our own families and friends, it
seems futile to think that we can plead or argue for any relief from the disease. In
short, education seems to be a first crucial step to advocating for those of us with
ALS. At first, this seems pretty elementary and an objective easily achieved. But if
my case is typical, then it grossly underestimates the existing ignorance about ALS
or Lou Gehrig’s disease. I had heard of it, and in fact an uncle had it and died from
it.

When I was diagnosed, I suddenly learned a great deal about this disease and the
gloomy prognosis for those so afflicted. Once that sunk in, it inspired me and my
wife to learn all we could and to tell as many people as would listen that I had an
incurable terminal illness that would likely take my life in a short period of time. No
cure, no effective medicines, no confirmatory diagnostic test or tests, all of this
came as an incredible shock and led us to think, just what we can do to learn to live
with this disease and somehow stimulate the search for effective therapies and a
cure. That is when advocacy suddenly came into clear and distinct focus for us.
We had to help get the word out, the public educated and the research community
put on a fast track. It came as another shock to learn that there is no national
database of ALS patients. Without this crucial basis on which to seek funds for
therapies and a cure we were simply bouncing around in a very dim room without
much hope for an early resolution to the seemingly endless ignorance that
surrounded the disease that I now had, was dying from, my body shutting down the
use of limbs, speech, breathing. I was encouraged when ALSA made the National
ALS Registry one of its key legislative goals.

And so it seems that the first order of business is to educate using every avenue
available, educate as to the lack of a diagnostic test or tests, no effective therapies
and certainly no cure, nor the hope for one on the horizon. Because unless we
make major inroads on the ignorance about ALS, it seems any effort to inspire
                                           73
research, or for legislation to fund increased research would be a whisper in the
hurricane of all the diseases for which cures and therapies are being sought.

Now the sad fact is that those of us with ALS don’t stay around long enough to build
an effective voice made up entirely of the afflicted. In the U.S. it is estimated that
there are no more than 30,000 people with ALS at any one time. Of those, more
than likely only a quarter or less than 10,000 are healthy enough or still have the
ability to do much more than try to deal with the rapid progression of the disease.
That is not a large constituency by any means, and without any cure on the horizon
these numbers are not likely to change much. About as many die from the disease
as are diagnosed.

Remember what advocacy is, it is arguing or soliciting aid and if there are not
sufficient numbers of people with ALS to constitute an effective voice what avenues
are open to us. I think that the answer lies in those who care for us, those who are
family, friends, and acquaintances, colleagues in the work place or faith community.
These are the groups that can be large enough to have sufficient voice and volume
to speak on our behalf. If one looks that those involved with the national
organizations that have grown to represent us, you will find that many have had
their lives touched by a loved one with ALS or a coworker, or friend. Thank God for
that, because we PALS are a pretty anemic group if counted on our own.

Awareness, education, appreciation, all of these must be our goal and those who we
hope will advocate for us. While we are healthy enough to speak on own behalf, we
must do so, but we must also enlarge the community around us to achieve a noise
level that will be heard when we ask for more research, for better patient care and
services, accessibility as our mobility spirals downward. We, the PALS, have to be
at the center of this effort because it is a life and death challenge for us. But we
must also grow the community around us through education, to become an
effective voice for us with enough depth and volume to make our needs heard in all
the places where action must be taken on our behalf if we are ever to realize our
hope for better therapies, therapies that will bring ALS into the community of
chronic but treatable illnesses and finally, one day, a cure.

How do we do this? I think that it requires a multifaceted approach, but that
approach needs some healthy but vocal PALS at its center. Awareness events such
as the ALSA Walk to Dfeet ALS, the Ride for Life, Faces of Courage, and the many
other public initiatives are an essential part of this awareness effort. Seeking
celebrity spokespersons, maximum exposure and use of all aspects of the media
are vital parts to this campaign. We need to use the national organizations that
represent us to be our advocates and we must be our own advocates to keep the
rest of the advocates heading in the right direction with enough passion and vigor
to make a difference. I found that participating in the annual ALSA Advocacy Day
and Public Policy Conference has all sorts of good results. It allows our advocates
to network and in doing so become a harmonized chorus, rather than a bunch of
distinct weak voices each singing in isolation. It also brought the face of ALS and
our needs to our legislators. Some states have set up similar events to interface
                                          74
with their state legislators. It remains that the true strength comes from those who
care for us. Their lives have been touched on a very personal level, and they will
be round to keep advocating on behalf long after we have gone. If their voices
become strong enough, then maybe we will see therapies come along that will
extend the lives of PALS significantly and we can break above that 30,000 ceiling
that has plagued us for so long.

Simply stated, each of us has to be our own advocates arguing on our own behalf,
but we need to be active in growing and extending the advocacy communities made
up of our family, friends and coworkers, the researchers and service organization
volunteers and staffs that work for us. It isn’t going to work if we shrink into our
own lonely little space and do not reach out to others and continuously make that
group of others larger and larger, better organized and educated, to carry the
message of awareness and education that will make advocacy work for better times
for all PALS.



             A Letter to Advocate for Greater Research for ALS
                                   By Randy Roberts

I wrote this letter some time ago to draw attention to the fact that ALS is
under-funded compared to other diseases. It has been modified from the original.


Dear Senator/Congressman,

I am writing this letter to bring to your attention to the fact that ALS (Lou Gehrig’s
Disease), an illness that receives far too little publicity in view of its devastating
impact on the lives of so many Americans, is under-funded by NIH (FY 05) when
compared to other diseases and to ask for your help. But first, a few words about
this disease. ALS attacks the motor neurons (nerves) that send commands and
nourish muscles. As the neurons die, the muscles that they support weaken and
atrophy. Although the disease can progress in different ways, a typical scenario is
for a limb to weaken first, and then spread to other limbs, rendering the body
paralyzed. Over time it progresses to muscles controlling speech, swallowing and
finally breathing itself.

 While ALS ravages the body, it generally leaves the mind intact, so patients are
fully aware of what is happening to them. One patient who wrote about his
experience with ALS said "With keen mind and open eyes We watch ourselves die ―.
In a testimony to the human spirit, many ALS patients manage to rise above their
suffering and continue to find meaning in their lives up to the end. ALS is not an
inherited disease: (95%) of all cases do not have a family history of ALS. And it is
not nearly so rare as people think, i.e., it is diagnosed about 2/3 the frequency of
MS (Multiple Sclerosis), a much more recognized illness. It can strike at any age
from the 20’s thru the 70’s (Lou Gehrig himself was diagnosed at age 36) but tends

                                           75
to peak in late middle age. There is no effective therapeutic agent against ALS and
no understanding of causation. Nobody is safe from this killer.

MS seems to offer a reasonable standard of comparison as it has about the roughly
similar incidence as ALS (10,000 new cases per year for MS vs. 6000-7000 for
ALS). There are approximately 400,000 people in the US living with MS vs. about
30,000 with ALS. Why the difference in prevalence if the diseases have a somewhat
similar incidence rate? The major factor is lethality. MS patients live a normal life
span while, as mentioned earlier, while ALS patients have a much shorter life span.
If ALS were not such an effective killer, its prevalence rate would obviously be
much higher. It seems reasonable that the two diseases should have nearly equal
public funding, since they both occur with the similar frequency, but this is not the
case. NIH budgets $110 million on MS research but $41 m on ALS. It is immoral to
base funding on prevalence in the context of similar incidence rates, thereby
penalizing ALS patients for the lethality of their disease

The next disease for comparison is Huntington’s disease, another disorder caused
by degeneration of brain cells, i.e. neurons, in certain areas of the brain. This
degeneration causes uncontrolled movements, loss of intellectual faculties, and
emotional disturbance. HD is a fully inherited disease, passed from parent to child
through a mutation in a certain gene. Its incidence and prevalence rate are much
lower than ALS and patients usually live 10-25 years after diagnosis. Yet, this
disease has an NIH budget of $48m vs. $41 m for ALS.

For the, 3rd and final comparison, I will move from diseases involving neuron
damage to one caused by a viral infection, HIV/AIDS. This illness has a large
incidence (85,000) and prevalence (1,100,000) but thanks to advances in
treatment, mortality has been significantly reduced. The number of patients who die
from this disease each year is only about a bit more than twice the number of ALS
deaths, yet HIV/AIDS has a research budget of nearly $3b vs. $41m for ALS.

CONCLUSION I.: Given its incidence rates and high lethality, ALS is woefully
under-funded compared to other diseases and this may explain, at least in part,
why so little has been learned about this disease since Lou Gehrig’s death 65 years
ago and why there have been no significant advances in treatment. It does not get
the recognition it deserves because its high lethality severely limits the number of
Americans who are living with the disease at any one point in time.

RECOMMENDATION I: The NIH budget for ALS research should be immediately
increased to $110m or roughly the same amount as MS.

A second issue I wish to address is the fact that the low prevalence rate of ALS, due
to its high lethality, does not provide any incentive for major pharmaceutical
companies to search for a cure. The only drug for ALS, Rilutek, about 15 years old
now, extends life only 2-3 months, is used by many patients at high cost, yet the
maker of the drug, Aventis, claims that it loses substantial money on Rilutek. MS, in
comparison, with its 400,000 prevalence in the US alone, presents significant
                                         76
incentive for drug companies to invest in research. In fact, there are 5 meds that
have proven very beneficial and sales are big. Avonex, for example, had close to
$1b in sales in the last year. Another drug, Copaxone, may have the greatest
potential to alter the course of MS and sales, once the issue of side effects is
resolved, should be huge. If we accept the view that it costs the companies $800 m
over 10 years to develop and bring to market a successful drug, then about $4
billion has been spent to produce these disease mitigating medications, or $400
m per year, not including current research.

The FDA offers an orphan disease program to provide incentives to companies to
invest in research of diseases having a prevalence of fewer than 200,000. The
program provides tax incentives and other advantages for only small grants;
unfortunately the incentives offered are too small to interest large companies with
all their research potential.

Conclusion II: Because of ALS’s high lethality, prevalence will always be low. As a
consequence, big pharma will not have the incentive to invest in ALS research and
the high tech power of drug companies won’t be harnessed to find new therapeutic
agents in the fight against ALS.

Recommendation II: Federal health agencies must provide the incentive to big
pharma to invest in ALS research. The FDA Orphan Disease Program must be
substantially increased to accomplish this. $80m per year in incentives must be
allotted to get major companies interested in working on this research. Funding
could include a combination of grants, tax credits and exclusive marketing rights,
etc. The grants could be reduced as companies come closer to marketing the new
agents.


Under-funding of ALS will not be righted without your active intervention. I am
asking
for your help on behalf of both the 30,000+ Americans living with the disease
today and the estimated 70,000 who will die every 10 years until a cure is found.
ALS has been neglected far too long.

Thank you for your interest. We and our families are counting on you.


Randy Roberts
Person with ALS, diagnosed 4/04




A FINAL WORD ON ADVOCACY



                                         77
Our numbers are small, our voices are too weak to be above the din, we cannot
―act up‖ like the early AIDS activists and we have no famous person to champion
our cause. But we must try to keep public awareness on ALS and help raise funds
for research. This chapter has shown you some ways. Use your energy and
creativity to help us in this fight.



                                    CHAPTER 8

MATERIALS AND RESOURCES AVAILABLE AT NO CHARGE
                                  By Catherine Wolf

Introduction
Many organizations offer free stuff, grants and/or services to people with ALS and
their families. As a newly diagnosed PALS, you’re probably overwhelmed by the
challenges ahead. This chapter puts in one place information about free stuff,
grants and services that can make your life easier and save you money. The
conditions that apply, if any, and how to contact the organization are included here.
There may be other organizations offering services to PALS. These are the ones we
know about.

Muscular Dystrophy Association (MDA)
MDA services are administered by the local offices. To find your local office, go to
http://www.mdausa.org/ . To receive services, you must register with the local
office, but registration is free.

Financial benefits. These apply after all insurance has been paid.
 Up to $2,000 towards the purchase of wheelchairs or leg braces every five years.
   This benefit may be used for wheelchair upgrades.
 Up to $500 annually for wheelchair repairs.
 Up to $2,000 towards the purchase of augmentative communication devices.
   This is a one time benefit.

Other services and free stuff
 One physical, occupational, and speech therapy evaluation per year
 Annual flu shot
 Transportation to MDA clinics
 Loan closet containing items such as wheelchairs, hoyer lifts, hospital beds,
   commodes, etc
 Research updates, informative publications (MDA ALS News Magazine, Quest),
   resources & referrals, web site
 Support groups for PALS, caregivers and family

ALS Association (ALSA)


                                          78
ALSA is organized differently from MDA. Each local chapter decides what services to
offer. To find your local chapter, go to http://alsa.org/ .To receive services, you
must register with your local chapter, but registration is free. I will use the services
of the Greater New York chapter as an example. But please contact your local
chapter since services and eligibility are sure to differ.
 Loan of augmentative communication devices. To qualify, you must have no
   functional speech. Also, you must be in the process of applying for coverage of
   such a device by your insurance, have no insurance coverage for such devices,
   or have no insurance.
 Listening library. Loan of books on CD or tape by mail to PALS who can no longer
   hold a book or turn pages easily. Check your local library for loan of audio books.
   The Library of Congress offers audio books by mail, - www.loc.gov/nls. The New
   York chapter lists a variety of nationally available sources of audio books. Go to
   http://www.als-ny.org/ and click on Patient Services, then Patient and Family
   Programs, then Listening Library.
 Loan closet with similar items to MDA loan closet. To qualify, the equipment
   must be recommended by a health professional and you must be in the process
   of applying for coverage of the equipment by your insurance, have no insurance
   coverage for the equipment, or have no insurance.
 Transportation to ALSA clinics and support groups. To be eligible, you must have
   no other way of getting there.
 Home visits by nurses, social workers and assistive technology specialists
 Support groups for PALS, caregivers and family
 Your local chapter can provide referrals and the national website has educational
   materials and publications, see http://alsa.org/ and click Resources and Patient,
   Family, Caregivers

Ride for Life
Ride for Life is an awareness and fund raising organization whose main event is a
ride for PALS in their wheelchairs in the New York area.

Financial benefits
 Respite care grants. Ride for Life periodically offers a limited number of Care for
   Life grants of up to $1500 for the purpose of giving your caregiver a break. See
   http://www.rideforlife.com/
 Legal grants. A limited number of grants of up to $750 are periodically offered
   for legal expenses such as wills, dealing with insurance companies, and applying
   for disability benefits under the Plan for Life program.
 While not a direct benefit to you, when you enter certain online stores from
   http://www.rideforlife.com/, Ride for Life gets a percentage of the purchase
   price.

Other services and free stuff
 Information, educational materials on the web site

United Spinal Association

                                           79
Membership in the United Spinal Association is open to people with spinal cord
injuries or diseases that affect the spinal cord, including ALS. See the web site at
http://unitedspinal.org/ .Although this organization is not well known in ALS
community, it provides valuable services to PALS. To receive services, you must
join the organization, but membership is free. United Spinal is headquartered in
Jackson Heights, NY with several regional offices.

Financial benefits
 Under the Wheelchair Medic program, you get a 10% discount on the price of
   wheelchairs and scooters and 15% off on parts. See
   http://www.wheelchairmedic.com/
 Low income members can get up to $5000 for accessibility modifications to the
   home. See
   http://www.unitedspinal.org/publications/action/2006/03/24/affording-
   accessibility-home-modifications/
 Low income members may qualify for grants for assistive technology and
   automobile refits. Call : 800-404-2898 or email inf@unitedspinal.org

Other services and free stuff
For a more complete description of services see http://www.unitedspinal.org/how-
we-serve/
 ABLE to Travel is full service travel agency that can arrange accessible
   transportation to and from the airport, book flights, arrange accessible
   accommodations, give information on access to medical equipment, and answer
   your questions about wheelchair and disability travel. See
   http://www.abletotravel.org/
 Personalized consultations with experts in the areas of
      o Accessibility Rights
      o Benefits Counseling
      o Social Services
      o Adaptive Sports & Recreation
      o Self Advocacy
      o Legislative Issues
      o Healthcare & Service Locating
      o Peer Counseling
      o Spinal Cord Issues
      o Veterans Benefits
      o Accessible Travel
      o Wheelchairs & Assistive Technology
      o Design of accessible home modifications
 Special services for veterans under the VetsFirst program
 Educational materials and excellent ACTION Online magazine,
   http://www.unitedspinal.org/publications/action/

Conclusion



                                          80
You are not alone in your fight against ALS. These organizations and others are
ready to help you in a myriad of ways. This information is accurate to the best of
our abilities.



                                   CHAPTER 9

                                  RESEARCH


Some PALS and CALS are interested in learning about developments in ALS
research and in looking beyond the surface of the latest headline finding displayed
on websites. Because PALS and CALS are not familiar with the technical terms, I
(RR) have supplied some simple definitions taken from ALSA’s website and other
sources which will make the article that follows easier to read.


Amino Acids: They are the building blocks of proteins.
Blood Brain Barrier (BBB): A protective barrier formed by the blood vessels and
glia of the brain. It prevents some substances in the blood from entering brain
tissue.
Central Nervous System (CNS): The brain and spinal cord combined.
Embryonic Stem Cells: Embryonic stem cells are the "blank slates" of an
organism, capable of developing into all types of tissue in the body.
Gene: Genes are the basic biological units of heredity. They are composed of DNA.
Glutamate: Glutamate is one of the most common amino acids found in nature. It
is the main component of many proteins, and is present in most tissues. Glutamate
is also produced in the body and plays an essential role in human metabolism. It is
a primary excitatory neurotransmitter in the human CNS. L-glutamate is present at
a majority of synapses. Over-stimulation of these same receptors is thought to
trigger the neuronal damage associated with a wide variety of neurological insults
and diseases, including amyotrophic lateral sclerosis (ALS), lathyrisms, and
Alzheimer's disease.
Glutamate toxicity: Toxicity resulting from excess glutamated synapse.
Mutation: A permanent change, a structural alteration, in the DNA or RNA.
Mutations can be caused by many factors including environmental insults such as
radiation and mutagenic chemicals. Mutations are sometimes attributed to random
chance events.
Neuron: Neurons are the nerve cells which make up the central nervous system.
They consist of a nucleus, a single axon which conveys electrical signals to other
neurons and a host of dendrites which deliver incoming signals.
Neurotransmitters: Chemical substances that carry impulses from one nerve cell
to another; found in the space (synapse) that separates the transmitting neuron's
terminal (axon) from the receiving neuron's terminal (dendrite).

                                         81
Protein: Proteins are large molecules required for the structure, function, and
regulation of the body's cells, tissues, and organs. Each protein has unique
functions. Proteins are essential components of muscles, skin, bones and the body
as a whole. Protein is also one of the three types of nutrients used as energy
sources by the body.
RNA: A long-chain, usually single-stranded. The primary function of RNA is protein
synthesis within a cell. However, RNA is involved in various ways in the processes
of expression and repression of hereditary information. The three main functionally
distinct varieties of RNA molecules are: (1) messenger RNA (mRNA) which is
involved in the transmission of DNA information, (2) ribosomal RNA (rRNA) which
makes up the physical machinery of the synthetic process, and (3) transfer RNA
(tRNA) which also constitutes another functional part of the machinery of protein
synthesis.
Stem Cells: Cells that can differentiate into many different cell types when
subjected to the right biochemical signals. Stem cells are a promising new
therapeutic approach to treating CNS disorder. The most versatile stem cells, called
pluripotent stem cells, are present in the first days after an egg is fertilized by
sperm. Researchers believe they can coax stem cells to become whatever tissues
patients need. Stem cells come from embryos, bone marrow and umbilical chords.
Superoxide Dismutase: An enzyme that destroys superoxide. One form of the
enzyme contains manganese and another contains zinc. Superoxide is a highly
reactive form of oxygen. For ALS, 20% of the total patient population has mutations
in the gene for copper/zinc superoxide dismutase type SOD1. SOD1 normally
breaks down free radicals, but mutant SOD1 is unable to perform this function.
Synapse: A tiny gap between the ends of nerve fibers across which nerve
impulses pass from one neuron to another; at the synapse, an impulse causes the
release of a neurotransmitter, which diffuses across the gap and triggers an
electrical impulse in the next neuron.
Toxin: A poisonous substance of animal or plant origin.
Transgenic: An organism whose sperm or egg contains genetic material originally
derived from an organism other than the parents or in addition to the parental
genetic material.




                             RESEARCH OVERVIEW
                                By Wayne Gimlin

Wayne is 39 years old and is an aerospace engineer. He is married with 3 kids.
In Fall 2002, the ALS clinic said that he had motor neuron disease with upper
motor neuron symptoms. They changed the "official" diagnosis to PLS in
2003 but won't rule out ALS. Today in 2006, he walks very stiff with a
walking stick and trips and falls on a semi-regular basis, speaks with a
slur, and has general weakness from head to toe. However, he still works


                                         82
as an engineer and ―enjoys‖ life. Wayne posts regularly on Brain Talk and is a
frequent contributor to ALS-TDF.

The Modern Era of ALS Research Begins

The modern era of research into ALS began in 1991 with the discovery of the cause
of a small subset of ALS in its familial form, namely the SOD1 gene.

http://www.eurekalert.org/pub_releases/2006-04/nu-dsa042506.php

Soon after, this same gene was modified in mice and a paralyzing disease similar to
what human ALS occurred. By over expressing the defective SOD1 gene in mice,
scientists can cause mice to show symptoms in their legs at approximately 90 days
with death occurring from 110 to 150 days. Although other mice and rat models
(e.g. the wobbler mouse) have been used when studying ALS, the SOD1 mouse has
been the mostly widely used in the last 12 years.

The First Approved Drug

In 1995, the FDA approved the drug Rilutek as a treatment for ALS.

http://www.fda.gov/fdac/features/796_als.html

Rilutek was first proposed as an ALS treatment in the late 1980s with Phase I and II
clinical trials meant to show safety completed in the early 90s. By 1993, two large
Phase III trials in Europe and the US evaluated the efficacy of Rilutek. These trials
divided ALS patients into placebo and treated groups and compared the survival
rate of both groups over 18 months. In both trials, there was reported a small
statistical difference between the two groups and therefore Rilutek was determined
to be marginally effective in slowing ALS. The method of action of Rilutek is the
reduction of a chemical called glutamate that is used by motor neurons to pass
signals. It is theorized that an excessive amount of glutamate is present that
damages and eventually kills a motor neuron in a process called excitotoxicity.

http://products.sanofi-aventis.us/rilutek/rilutek.html

Due in part to the apparent success of Rilutek, there was a flurry of specialized
drugs and treatments that were introduced to clinical trials as a potential treatment.
Examples of these trials included BDNF and GDNF which were injected into the
spinal fluid with a pump and the brain with an injection port. Other specialized
drugs were developed by Sanofi and other companies that were taken orally or
injected subcutaneously or peripherally. Unfortunately, all these drugs failed their
Phase III clinical trials that were to show efficacy and have not been approved for
use for ALS.




                                          83
One possible exception was a drug called Myotrophin that passed a Phase III in the
US but failed in Europe in 1997. This drug is actually a form of the brain protein
called IGF-1. In the Myotrophin study this drug was injected subcutaneously
directly into muscles of the patients. The theory behind IGF-1 is that it acts as a
way of protecting the motor neurons from damage caused by an external agitator.
Currently, Myotrophin is undergoing a trial to determine a ―final‖ answer to the
conflicting results of the two trials from the 90s.

http://www.rideforlife.com/news/als_research/clinical_trial_of_myotrophin.html


Recent Research into Pre-existing Drugs

The ALS research community is mainly comprised of university researchers and a
few non-profit and for profit companies. Due to the multiple failures of very
expensive developed drugs in the late 90s, the ALS research community focused
more on the use of existing drugs to treat ALS. The advantage of using existing
drugs is that they do not have near the development cost and if found to be
effective, can be cross-prescribed for ALS patients. Some examples of pre-existing
drugs taken to trial for ALS research are:


   Pre-existing drugs taken to Phase II or III trials.
   1. Celebrex. Failed Phase III trial.
   2. Creatine Failed two Phase III trials.
   3. Minocycline Currently in a Phase III trial.
   4. Tamoxifen Completed a Phase II trial showing safety and possible efficacy
   5. Hydroxyurea. Currently in a Phase II trial for safety and possible efficacy.
   6. Ritonavir. Currently in a Phase II trial for safety and possible efficacy.
   7. Indinavir. Failed a Phase III trial.
   8. Ceftriaxone. Currently in a Phase III trial.
   9. Pentoxifylline. Failed a Phase III trial.
  10. Sodium Phenyl Butryate (PBA). Currently in a Phase II trial
  11. R+ Pramipexole. Currently in a Phase II trial
  12. Thalidomide. Currently in a Phase II trial
  13. Aramiclomol. Currently in trial.
  14. Others.

http://www.mda.org/research/ctrials.aspx


SOD1 Mouse Studies

One important point about these drugs is that nearly all were justified to the FDA
and the funding agencies as worthy of a human clinical trial, by the successful
completion of a SOD1 mouse test. In these tests, the mice are divided between
control mice and mice given a treatment. The variables of these tests include the
                                         84
point in their lifetimes that the mouse should begin treatment, the amount of dose
given, and the length of time given the dose. Further there is a question of how
many mice must be used per test and how closely related the mice must be.
Ideally, a researcher should be able to take any two sets of mice, treat them
identically and the average lifetimes of both sets should be about the same.
However, there have been questions over the results of these reportedly successful
mice tests.

ALS-TDF is a non-profit ALS research company started by James Heywood in 1999
as a response to the diagnosis of his brother Stephen with ALS in 1998. ALS-TDF
first investigated the use of stem cell and gene therapy to treat Stephen’s ALS in
the late 90s. However by 2002, ALS-TDF started large scale testing of SOD1 mice
in the hope that a pre-existing drug may substantially slow the rate of ALS
progression. To their surprise, as of 2006, and after testing several thousand mice,
they have not been able to reproduce with repeatability the results reported from
other researchers’ mice tests. This includes Celebrex, Creatine, Minocycline,
Tamoxifen, PBA and others. They have been able to find small (< 10%) life
extensions which prompted them to help start a Phase II trial for Hydroxyura and
Ritonavir at the University of California in San Francisco (UCSF) but have not been
able to repeat these tests with consistency.

The concept of repeatability is a basis of science and experimentation. If a small
set of PALS were divided into two groups and their rate of survival tracked, it would
be expected that the average length of survival of both sets would not be exactly
the same. The two groups’ survival might be different by a few weeks or months. If
larger and larger groups were studied it would be expected that the difference in
survival between the two sets would diminish. The same is true for mice. If small
samples of mice are chosen to be in the control and in the treated group there is
some certainty that the two groups will have different life spans by random chance.
The way of proving that the treatment and not random sampling is the cause of the
treated group outliving the control group is by repeatability, meaning that the test
can be repeated by any competent researcher anywhere and has approximately the
same results. There is a large question on whether the tests that have been
published as ―successful‖ are actually repeatable.

Other concerns over the use of the SOD1 mice are the fact that the mutated SOD1
protein is not present in most PALS both those with familial and sporadic forms.
This has caused much speculation that a successful SOD1 mouse test would not
translate into a successful human clinical trial. Also there is concern over the
differences between humans and mice on how they react to different drugs.
Differences in how drugs cross the blood brain barrier could easily complicate
whether a drug that affects or doesn’t affect a mouse would have the same type of
result in a human. To date, what is lacking is what is called a ―positive control‖.
Essentially this is a drug or treatment that has proven success in mice and humans
which can be used to gauge how other reactions in mice might affect a human.



                                         85
Since the SOD1 mouse is one of the few animal models that closely mimic ALS,
researchers will continue to use them for drug discovery. What should be asked by
PALS and closely noted is how many mice were used, how many times was the test
repeated using the same parameters, and how many different laboratories also
repeated the test. Past research has shown that many if not all of the reportedly
successful mouse tests cannot answer these questions adequately.

Causes of ALS
ALS research is hampered by the fact that how it is caused and how it progresses is
mainly unknown. Although approximately 10% of ALS cases are known to be
genetic, how the damaged genes cause ALS is still not known. Since SOD1 is a
gene that produces a SOD1 protein that acts as an anti-oxidant, some have
theorized that oxidation could be a key player in ALS. However, later research has
pointed more towards the concept that these proteins could be tangled or misfolded
and thereby causes cell death.
In either case, one of the current main focuses of ALS research is identifying what
genes are defective in familial ALS and if there are similar defective genes in
sporadic ALS. Currently there are several trials sponsored by the MDA that concern
identification of genes in ALS.

http://www.mda.org/research/ctrials.aspx

Researchers are also interested in environmental factors that could cause ALS but
so far, none have been proven. Besides the root cause, researchers have focused
much of their efforts into identifying what happens in the cells that cause ALS
death. This is a large subject but some of the areas of interest are:

  1.   Protein Misfolding
  2.   Immune system and Inflammation
  3.   Oxidation
  4.   Axonal transport
  5.   Excess Glutamate
  6.   Calcium
  7.   Mitochrondria malfunction


Biomarkers in ALS

Other interests of ALS research include finding markers for the disease. For many
diseases, identification of biomarkers in the blood or cerebral fluid help to both
diagnose a patient with the disease and mark the efficacy of test drugs. To date,
Dr. Robert Bowser of the University of Pittsburgh has published a biomarker study
that identifies biomarkers in the cerebral fluid but it has not been developed for
general use.

Gene Therapy Studies

                                         86
The concept of using gene therapy has been investigated for ALS. There have been
two basic approaches examined. These are synthesis of growth factors and the use
of gene silencing

   1. Synthesis of Growth Factors - In 2003, Dr. Fred Gage of the Robert
      Packard Center announced that they had significantly extended the life of a
      SOD1 mouse by the use of IGF-1 gene therapy. In this approach, an AAV-1
      virus is injected into various muscles of the mice. The virus then moves up
      the nerve into the lower motor neuron nucleus located in spinal cord. There it
      ―infects‖ the motor neuron and changes its DNA structure. This allows the
      motor neuron to synthesize a chemical called IGF-1 that is thought to be
      protective. In the 2003 announcement it was stated that trials could begin in
      one year but as of 2006, no human trial has begun.


http://www.alscenter.org/alsalert/2003_fall/2003_fall_page001_gene_therapy.html

http://www.hopkinsmedicine.org/press/2003/AUGUST/030807A.HTM

   Another growth factor which has been theorized as having a potential effect is
   VEGF.

   http://jama.ama-assn.org/cgi/content/extract/291/23/2809-c

   http://www.scienceblog.com/community/older/2004/10/20049657.shtml

   2. Gene Silencing - The use of a compound called RNAi or sRNAi has been
      proposed for ALS to silence the effect of a defective gene. This compound is
      essentially tailored to block the production of specific proteins. In particular,
      for SOD1 mice, RNAi has been used to block production of the SOD1 protein
      that is thought to be the cause of a small number of ALS cases. In particular,
      this type of therapy is thought to have potential to stop ALS progression
      where the actual defective gene such as SOD1 is known.


CytRx - RNAi Therapeutics

http://www.alscenter.org/alsalert/2005_winter/2005_winter_page003_gene_discon
nect.html


Stem Cells

One of the most discussed topics of ALS research is the use of stem cells. Stem
cells are the master cells in the body that differentiate into other cells. Embryonic
stem cells which are the first cells created after conception are pluripotent meaning
that they have the ability to transform into any other cell in the body. Adult stem

                                          87
cells are not pluripotent but do have the ability to turn into specific cells such as
neural or blood cells.

Stem cells have not yet been used for ALS by any legitimate research group
although numerous scam institutions around the world have used the controversy
surrounding them to take advantage of ALS and other patients. Despite that, the
legitimate research community has envisioned using stem cells in various ways for
ALS. The most ambitious may be the use of them to regrow the entire motor
neuron network that has already been lost due to the destruction wrought by ALS.
The motor neurons die in ALS and they are very large. The lower motor neurons
are centered in the spinal cord but their axons or nerves extend all the way to the
muscles making them up to 3 feet in length. The upper motor neurons are
centered in the brain and their axons extend down the spinal cord to connect to the
lower motor neurons. Recent work by Dr. Kerr at John Hopkins University has
investigated reconstructing motor neurons in rats.

http://www.alscenter.org/news/briefs/060620.cfm

Less ambitious but perhaps not as complicated use of stem cells would be to use
them to protect existing motor neurons from destruction in ALS. It is thought that
stem cells could migrate to areas of the spinal cord not easily penetrable by drugs.
They could perhaps be pre-programmed to secrete growth factors or other
protective agents that could keep motor neurons alive.

ALS Research Funding

The majority of ALS research is conducted by non-profit institutions or universities.
This is unfortunate because if for-profit pharmaceuticals had more of a role in this
research, more resources including personnel and equipment could be utilized. As it
is, the government through NINDS or the National Institute of Neurological
Disorders and Stroke is a major provider of the money for research, approximately
$50 million in 2006. Other providers are the MDA (Muscular Dystrophy Association)
and the ALSA or ALS Association.

In addition to these are smaller organizations developed by the families of PALS
such as Project ALS developed by the Estess family and ALS-TDF created by the
Heywood family which is also an active development laboratory that has been
searching for drugs that may slow or stop the disease. Websites are below:

http://www.als.net/
http://www.projectals.org/



                                    CHAPTER 10

                                           88
  DEFINITIONS OF MEDICAL AND RELATED TERMS AND
           SUPPLEMENTAL INFORMATION


Age of Onset- ALS onset ranges from the early 20’s through the 70’s, with the
greatest frequency in the 50’s and 60’s. Average age of onset is 55.

Baclofen: a prescription medication to reduce stiffness that often accompanies
ALS.

BiPAP – a small piece of medical equipment designed to take pressure off the
breathing muscles (diaphragm), usually when sleeping. The device is attached to
the nose or nose and mouth by a mask and kicks in right after the start of an in-
breath. It finishes the inhalation by blowing a volume of air into your lungs, thereby
resting the diaphragm. Can be hard to get comfortable with at first, but becomes
easier with practice.

Bulbar Onset – When symptoms first manifest in muscles that control swallowing,
chewing and speech.

Constipation- a common problem for PALS, fortunately numerous remedies are
available.


Cough Assist Machine (Insufflator-Exsuflattor) – A type of non invasive
medical equipment that helps clear the lungs and throat of secretions by producing
a cough. For more Information, go to to J.H. Emerson - Cough Assist

Durable Medical Equipment (DME) - Medical devices designed to be used
repeatedly such as bipaps, canes, cough assist machines, wheelchairs, etc.

Electro Diagnostic Tests - Studies including electromyography (EMG) and nerve
conduction velocity (NCV), that evaluate and diagnose disorders of the muscles and
motor neurons. Electrodes are inserted into the muscle, or placed on the skin
overlying a muscle or muscle group, and electrical activity and muscle response are
recorded.

Fasciculations: Small, involuntary, irregular, visible contractions of individual
muscle fibers. Often seen in the legs, arms and shoulders of PALS. This is often
described by people with ALS as "persistent rolling beneath the skin." Commonly
known as muscle twitches.

Feeding Tube or PEG - Percutaneous endoscopic gastrostomy tube - a tube placed
directly into the stomach through the abdominal wall to provide another way to
receive nourishment and liquids.

                                          89
FVC (Forced Vital Capacity) – A formal measure of the amount of volume of air
that can be exhaled from the lungs using maximal effort. You will be tested each
time you attend clinic. Your performance is compared to what the average person
would score. The result is expressed as a percentage.

Hyperreflexia: Excessive response of muscle reflexes when a normal stimulus is
applied. One of the characteristic findings in ALS.

Limb Onset- when first symptoms occur in legs, arms, feet or hands.

Lou Gehrig – (1903-1941), American professional baseball player, also known as
the Iron Horse because he established a record for the most consecutive games
played by a professional baseball player, appearing in 2130 games from 1925 to
1939. From 1923 until 1939 he played first base for the New York Yankees of the
American League. Gehrig was twice voted the league's most valuable player (MVP).
Stricken with the spinal disease ALS, which later became known as Lou Gehrig's
disease.

Lower Motor Neuron- Nerve cells starting at the spinal cord or brain stem and
ending at the muscle fibers. The loss of lower motor neurons leads to weakness,
twitching of muscles (fasciculations), and loss of muscle bulk (atrophy).

Miracle Cures –You have to be careful in this area. There are unscrupulous people
out there trying to sell useless and expensive products that are bogus. Be sure to
use common sense and don’t fall for false claims. Remember, no matter what the
advertising states, no matter what is promised, there is no current cure for ALS. A
good site to help you identify charlatans and false advertising can be found at:
http://members.aol.com/alspinpoint/quack.html

Motor Neurons- The cells that control voluntary muscle activity such as speaking,
walking, breathing, and swallowing. Electrical signals are sent from the brain and
spinal cord via neurons which in turn stimulate the muscles. In ALS, these neurons
slowly die off, leading to muscle atrophy and the other symptoms of the disease.

Motor Neuron Disease- A group of disorders in which motor nerve cells (neurons)
in the spinal cord and brain stem deteriorate and die. ALS is the most common
motor neuron disease.

Progression – ALS advances over time, it is not static. Some PALS progress slower
or faster than average.

Range of Motion (ROM) - The extent that a joint will move from full extension to
full flexion. Many PALS do daily active or passive ROM exercise to maintain
flexibility, as recommended by a physical therapist, occupational therapist or other
health professional.



                                         90
Rilutek- The only medication so far demonstrated to be effective in ALS, although
only modestly. It is quite expensive.

Spasticity - An upper motor neuron problem and is present to some degree in ALS.
For some patients it is minimal, for others extreme. Spasticity can actually be
helpful in maintaining function as the rigidity helps replace normal muscle strength,
but it causes jerky, hard to control movements. Spasticity causes a tightening of
muscles resulting in a stiffening of that part of the body in an exaggerated reflex. It
is actually triggering both the muscles to flex and the muscles to extend that part of
the body at the same time. It can occur in any muscles - the arms, legs, back,
abdomen, or neck. A simple touch can trigger it and it may last only a moment or
persist longer.

Sporadic ALS (SALS) – When ALS occurs without a family history vs. Familial
ALS FALS) where ALS occurs within the context of a strong family history.

Tracheotomy or tracheostomy is a surgical procedure performed on the neck to
open a direct airway through an incision in the trachea (the windpipe). Later in the
course of ALS, the muscles that assist in breathing weaken. Bipap is the first line of
defense, but when that is no longer adequate to maintain lung function, some PALS
opt for a tracheotomy, which is attached to a vent, a mechanical device that
replaces spontaneous breathing.

Ventilation or Vent- A method to assist or replace spontaneous breathing using a
mechanical device. See Tracheotomy.

Upper Motor Neurons- Nerve cells (motor neurons) that originate in the brain's
motor cortex and run through the spinal cord. In ALS upper motor neuron loss
produces stiffness and problems with balance.

Vitamins and supplements - The vitamins and supplements and the daily dosage
range often used by PALS are vitamins C (1000 to 2000mg ), B complex, E (1000
IU), coenzyme Q 10 (200 to 1800 mg) and NAC (1500mg) Some PALS take many
other supplements, too, and use very few. There is a school of alternative medicine
that recommends a large variety of controversial supplements and procedures. If
interested, you can check this out, but again use your common sense and think
critically about claims being made.




                                   CHAPTER 11

                                READING LIST
                        As suggested by Jodi Hall and others
                                          91
Some people enjoy reading personal stories of PALS’ lives from cover to cover.
Another strategy is to read only the early parts of the book, and then return later
when you feel more ready to process the later parts. There are so many excellent
books, below is just a small sampling.


Learning to fall: The Blessings of an Imperfect Life
By: Philip Simmons

Philip Simmons was diagnosed with ALS in 1993. An associate professor of English
at Lake Forest College in Illinois, Simmons was just 35. In his quest to help others-
and himself-Simmons turned his experience living with ALS into his first book,
LEARNING TO FALL: The Blessings of an Imperfect Life. The insights Simmons
shares in LEARNING TO FALL are less about self-improvement than celebrating the
everyday.

Tuesdays with Morrie - An Old Man, A Young Man, And Life's Greatest Lesson
By: Mitch Albom

Morrie Schwartz was Mitch Albom's college professor and mentor. Knowing he was
dying, Morrie visited with Mitch (an ALS patient) in his study every Tuesday. Their
rekindled relationship turned into one final "class": lessons in how to live. This book
has been on the best seller list over one year.

ALSA PAMPHLETS
Maintaining good nutrition with ALS - A guide for patients, families and friends
Caregiving - When a loved one has ALS
Basic home care for ALS patients - The ALS Association guide for patients and
families

Counting on Kindness: The Dilemmas of Dependency
By: Wendy Lustbader

It deals with disability and aging issues for those of us who rely on the help of
others such as guilt and resentment, why "little things" become so important, and
the importance of having a regular schedule. For example, disabled people often
loose out on the regular activities of life which provide structure, and days and
weeks seem to run together. Forgetting which day it is may just be a symptom of
lack of schedule rather than developing dementia. Regular visits, trips for meetings,
shopping, worship, or coffee can provide time structure, and gives one things to
look forward to and some sense of control to the powerless.


Closing Comments: ALS A Spiritual Journey Into The Heart Of A Fatal
Condition By: Brian Smith

                                          92
I Choose To Live, A Journey Through Life With ALS, By: William Sinton

Journey with ALS, By: David Fergenbaum

Tales from the Bed, on Living, Dying and Having It All
By: Jennifer Estess

Waking up By: Terry Wise

Charlie's Victory By: Charlie Wedemeyer

His Brother's Keeper By: Jonathan Weiner

ALS: A Guide for Patients and Their Families By: Jonathan Weiner

                       ALS_Manual_English.pdf (791k)

Two Great Manuals:

                       ALS Pro Guide pdf (2135k)

Children's books:

In my Dreams I Do, By: Linda Saran

Lou Gehrig, the Luckiest Man Alive, By: David Adler




                                     93
                                  CHAPTER 12

                            CLOSING COMMENTS

What began as an attempt to develop a brief manual for newly diagnosed PALS and
their CALS has grown into a large guidebook. Whenever I tried to pare down the
length, I realized instead that something important had been left out. And so it
grew. Still, there was so much more that I wanted to include, but the manual would
have become so lengthy and unwieldy that it would have defeated its purpose. You
will have much time to learn more on your own, as soon as you are comfortable
with the basics.

The goals of the guidebook were several: to ease the pain and suffering that follows
the diagnosis and to offer a more positive and hopeful perspective; to provide ideas
on how to cope effectively with ALS; to begin to lift the clouds of confusion created
by all the unfamiliar material to which you have been exposed; to introduce you to
the peer community of PALS and CALS and to provide introductory information that
will broaden your knowledge of both ALS and available resources to battle it. And,
all contained in one manual, integrating numerous sources of information, and
designed to meet the specific needs of those recently diagnosed and their loved
ones. I hope some of these aims were met.

The emphasis in this guidebook has been on living well with ALS and these pages
have pointed you in that direction. It will be the most difficult challenge that you
and your CALS have ever faced, but it can be done, as you have seen in the stories
in this guidebook. You can do it, too. And there are so many out there to help.

I hope you will join me and the many PALS and CALS at the Living with ALS
group. You can learn and gain encouragement from our posts and we need to hear
your questions and receive the benefits of your insights. We are all one in the fight
against ALS.

To all new PALS and CALS, welcome to our family.

Randy Roberts, PhD (psychologist, retired), age 60
PALS, Diagnosed: 4/04


Email address
jer-55@55jer.com

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