Get documents about "Business Plan Nutritional Suppliments
Description
Business Plan Nutritional Suppliments document sample
Document Sample
The Southern California
April PPS MANAGER 2004
Dedicated to being our best with Post-Polio Syndrome
FROM THE EDITOR
Hi Fellow PPS Managers.
What I’ve Learned
About Living with PPS in My Second Year
Well, I expected warm weather by now, but so by Gladys Swensrud
far it's been as cool as it's supposed to be in
April. Where's global warming when you need As a culmination to my second year since
it. Anyhow… diagnosis with Post Polio Syndrome, I felt that the
In the last issue, much to everyone's most appropriate way to begin was with a quote
delight, Gladys Swensrud shared her first year from Quest Magazine. Quest is a publication that
of PPS. In this issue she shares her second year I began receiving free from the Muscular
experiences with PPS. See how much you have Dystrophy Association after being seen at the
in common. MDA Muscle Wasting Clinic through Children’s
According to recent studies, most of the Hospital two years ago. I read it cover to cover,
people who had polio will experience PPS and and I always find something fascinating to save,
about half of them are having breathing learn and recount to others that I communicate
problems. From what I've seen only a small with in PPS circles.
percentage of people with breathing problems In an article by Jan Blaustone on page 35 of
are aware of the problem and doing something Vol. 10 No. 1/ February 2003, she said: “I explain
about it. For example, at the March HAPS that neuromuscular diseases are progressive, and
meeting 15 people were tested and all but two our needs change almost as fast as youngsters
need breathing assistance. If it seems that I'm outgrow their shoes and underwear.” That quote
on a campaign, now you know why. pretty much defines what I learned during the
Many of your fellow PPS Managers have second year dealing with PPS. I wish I had read it
taken advantage of the free testing offered by sooner; it might have saved me the year trying to
Progressive Medical and most are reaping the sum up how I dealt with year two !
benefits. If you haven't, you should. The start of my second year with PPS was
Finally, after six months of nighttime met with a mixed bag of joy and sorrow. Joy at
ventilation, I share what I've learned about the the birth of my first grandchild, Kira Skye, and
therapy and about myself. Needless to say, not sorrow with the understanding of how my
everyone will be as lucky as I've been, but many physical challenges define my relationship with
people are better off, and several people have Kira and others. The vision of how you would
already shown similar results. like to spend your first years as a grandparent are
Have fun….Rick pretty well fixed in your mind many years before
--∞∞o∞∞-- their birth. You’ll buy a jogging stroller and take
IN THIS ISSUE: her through the park; you’ll take her to the lake on
LESSONS pt 2- by Gladys Swensrud a quiet morning to teach her early on about the
pleasures of the out of doors with ducks bobbing
BiPAP - Six month report for food, the haze on the lake in the spring, which
This and That hugs the cattails near the shore, or about a
Letters, And much more… tarantula crossing the warm pavement on an early
2- 2 -
PPS MANAGER 2
summer morning. You dream about hauling the system that is truly knowledgeable in Post
her in a backpack, as you did her mother, Polio Sequelae. Their answer is that all
around the zoo to enjoy every animal and neurologists in their system are as knowledgeable
focusing on the uniqueness of one or two each as anyone else in the U.S. I somehow doubt this
day. to be true, but I became so tired of fighting and
I digressed here because these were my feeling like the bad guy causing trouble, that I just
plans. The reality of Post Polio Syndrome is finally gave up asking. I still haven’t given up
none of the above can take place in the manner wanting someone to help me find answers
in which you had planned. Walking through though.
the park, around the lake or through the zoo
can’t take place at all. Standing and walking are As a fast aside, in March 2002, the beginning
the biggest chore in my day. A more likely of my second year after diagnosis with Post Polio
scenario is that someone will accompany us as I Syndrome, I had two significant thoughts to add
ride my scooter or push me in a wheelchair, to my first year remembrances:
which is fine, but it wasn’t part of “the plan!” 1. The first was a realization of “pains” in my
Year two was a year marked by giving in legs. Throughout the first year, Dr.
and giving up. I found that each day begins Lamantia has asked me on several
with the question: How do I portion out my occasions if the tenseness that I have felt in
day in order to fit in the activities of most my thighs, legs and up my back could be
importance to me? Realizing that energy is pain. My brain, obviously, was interpreting
limited means choices must be made early in it as tightness and tenseness – a feeling like
the day. It’s always a pick and choose scenario. I could draw myself into a ball. In
I’ve picked continuing to work full time, so I actuality, during the month of March, I felt
choose not to do household chores that drain cramping/pain in my thighs and extreme
my energy early in the day. The hour that it fatigue in my legs most of the time as a
takes to get ready to leave for work leaves my result of standing and walking. Doc L was
legs tired at the start of the day. I get right, it was pain all along; my brain just
exhausted often before my day is over, so I read it strangely. At the end of a day, it
really must monitor my activities during the day resembles a deep ache that can’t be
to enable myself to continue to work. It’s reached. The rule of thumb was then
always a game of choices. adhered to: limit standing and walking even
The giving up part is the hardest of all. more!
For much of the past two years I have been
fighting my HMO. First I fought to find a 2. Also during this month, I had a new
diagnosis. Next I fought to secure a motorized childhood recollection of my
scooter to give myself the needed leg rest hospitalization at the age of 3 ½, of which I
during my working day to enable me to have only a few vivid memories. As I was
continue working, which they denied each step reading Post Polio Syndrome, A Guide for
of the way. Next I asked to stay as active as Survivors and Their Families by Dr. Julie K.
possible through a personalized plan of Silver, I vividly remembered being taken to
physical therapy for PPS patients, which they, a room at the end of my ward with big
once again, could not meet. Then I fought to (from a tiny child’s perspective at least)
be allowed to see someone, inside or outside of tubs. I was placed in a harness and my legs
3- 3 -
PPS MANAGER 3
and body were dunked in warm water. the day and into the evening – going through the
It was strange to remember something motions, but not experiencing any joy in life.
so suddenly that happened ages ago. Resting throughout the day helps, but it isn’t the
Obviously the book was a catalyst that big solution that I have been led to believe it would
triggered something in my memory that be. On certain days, when evening comes, I may
had been lodged there for so many years. not be tired enough to go to sleep at 7:00pm, but
I definitely cease to function. I become vegetative
As I progressed through the second year in that I just want to quit moving and
after diagnosis, I realized that even with the communicating, and I generally just go lie down in
help of Neurontin, I feel pain all of the time. It bed and rest or sleep.
subliminally infiltrates my every thought from Dr. Lamantia continued to follow me
the moment that I awaken in the morning and monthly for the first half of this year, but she took
take my first pill, until I fall asleep at night with a leave of absence in the second part, and I
my last pill. My life, somehow, revolves around missed her greatly. I have always been
it, but pain in one form or another is definitely appreciative of her continued help (She is a treasure
the center. I try to use my body wisely to in my life!) because I know I can’t track this
stand, guarding the use of my legs as much as problem on my own. As I learn more and more
possible since overusing my legs adds to the about the mystery of old Polio, I try to be
discomfort. I have known, and continue to understanding about why neurologists don’t
realize, that missing a dosage of my medication spend more time in the early days of our diagnosis
throws me totally off balance. It can turn an explaining what has happened, is happening and
otherwise good day into a difficult one just will eventually happen to survivors. I don’t
getting the tenseness (pain) back on track. believe the neurologists that I have come into
With the shift from a life focused on contact with know much about PPS, so they have
exercise for so many years to one attempting to had little to share and explain. Because no
avoid certain movements because of added information is being shared early on, I believe this
discomfort, it is no wonder I find myself is where the void begins! Who is educated
“down” mentally from time to time. Most days enough in old Polio to answer our questions?
the sadness of PPS is easy to hide. It is almost They refer you to your family physician, but how
like I am fighting every day to stay the person many of them know anything about Post Polio
that I was. It is no longer easy to feel Syndrome? Our questions to them come later as
“normal.” It requires much work, and some we have time to absorb the mind numbing news.
days I don’t have the energy to keep up the How bad will it become? Will you use the use of
facade. On those days I go to bed early, and I your limbs? What does the future hold? And part
awaken the next day with a renewed outlook. of the depression we live with day in and day out
Morning is definitely my best time. is attributable to the fact that no one can answer
Although I wake up with my legs experiencing these questions for us.
fasciculations and often tenseness, I get moving I began to be followed this year by a
– just like the new “normal” dictates! If I have pulmonologist, courtesy of Dr. Lamantia, and the
something activity related to do, shopping or physician she sent me to, Dr. Murray, is terrific.
vacuuming, this is the only time to do it. Once He thoroughly examined past tests, did new ones,
my legs get exhausted whether it is early or late and now I think he has a starting point from
in the day, I just plod through the remainder of which to follow my breathing problems. This
4- 4 -
PPS MANAGER 4
gives me confidence as I move forward with must read for anyone trying to understand the
my CPAP machine, which in itself was a major path that the Poliovirus took as it invaded our
improvement in my life since beginning the bodies. I feel that his understanding of PPS far
PPS ordeal. It took several months to adjust to surpasses that of any other person I have come
the facemask and the noise the CPAP machine into contact with at this point into my third year.
makes, but in this third year, I can now sleep at The focus of his book helps to understand the
night instead of awakening with shocking systemic battle that my body fought with the
breathlessness several times a night, and I have attack of Polio, and it has helped me understand
extra stamina throughout my day. why the ill effects of Post Polio just don’t affect
There are sooo many problems that my limbs.
polio survivors encounter that they need help Avoiding falls will be of major importance
with throughout this process. Breathing in year three. Each time I fall it takes me further
problems, pain management, walking assistance down and longer to try to come back to a
(like the addition of a cane or crutches to take workable point. My fall in August of 2002 has
stress off leg muscles), orthopedic help for further weakened my legs since both knees are
walking changes and weight management, to injured.
name a few. When your family practice doctor I recently spoke to a very wise, young
knows little or nothing about Post Polio and woman who, although she is only 53, has been
isn’t willing to learn along with you, then you dealing with Post Polio Syndrome for almost 15
are all alone in the learning curve. It can be a years. She said that she has all the aids, a cane,
lonely, frightening position to be in. Having crutches, manual wheelchair and a scooter, and
Post Polio in itself is very lonely and she uses them as each day dictates. Each day is
frightening. Michele Lamantia has been my different, and that’s where the quote that began
educated (and educating ) friend to walk with this segment of my PPS story began;
me through this difficult time. “…neuromuscular diseases are progressive, and
As I sort through the observations that I our needs change almost as fast as youngsters
have had during the second year after diagnosis outgrow their shoes and underwear.” How
(another pain issue, ugh) is, if my pain increases interesting it is to me that all who suffer from
during the day from overuse, I find that my PPS, as well as other types of neuromuscular
breathing pattern changes. With increased diseases, are such kindred spirits.
pain, my breathing becomes very loud and Special thanks from this year go to Dr.
shallow. It’s the same reaction that you might Lamantia (of course ) and MDA. They have
have when you bang your foot into a post. both played a part in helping me move forward
You immediately lose your breath, and you instead of standing still or falling backward.
breathe differently until the pain subsides. For
me, when the pain is too much to handle, I [Gladys shares her third year of the PPS in the
change my breathing pattern. This change in next issueof the PPS Manager newsletter. To
pattern is the extreme end warning that I have contact Gladys send email to swensrud@pacbell.net
gone to far and need to stop whatever I am - Ed]
doing and rest immediately.
My favorite PPS book of this year has
been The Polio Paradox, What You Need To
Know by Richard L. Bruno, H.D., Ph.D. It’s a
5- 5 -
PPS MANAGER 5
Six month BiPAP report. Respironics BiPAP Pro does the job. If I did have
By Rick Van Der Linden CSA I'd probably go with the Respironics
Synchrony S/T. Dr. Oppenheimer recommends
After six months of BiPAP use improvements the Knightstar 330, but I have not tried it. Noise
continue to hold up. For example: is an important factor, too. I found that a
continuous sound is more conducive to sleep.
Before and after: Some machines, like mine, run constantly at high
B - Chronic fluid in lungs for three months and speed (your ipap setting) and use a gate to switch
bronchitis twice a year. to your epap setting and back again. This keeps
A - One three-day period of slight cough. the sound of the machine fairly constant, like a
very small vacuum cleaner. Others may use high
B - Outside of home I used leg and back and low motor speeds to change from epap to
braces, scooter. ipap making the sound somewhat loud when you
A - BiPAP is only required assistive device. breathe in and nearly silent when you breathe out
and that bugs me. It also uses more energy and
B - Travel limited to home elevation or lower. that bugs me, too.
2-hour round trip max. The right machine is very important, but it
A - I can go anywhere and do anything, as long won't deliver maximum curative effects without
as I take the BiPAP along and use it during rest the right mask. Problems I had with masks
as needed. included the Respironics Comfort Classic
(commonly prescribed by HMOs because its' the
B - Just enough energy to perform minimum cheapest one) which has a non-adjustable, one-
daily activity. point forehead rest. It was leaky, uncomfortable,
A - Average daily activity: four hours. (Six low and caused a sore on my forehead. Also, because
stress or 2 to 3 heavy activity.) During low level there were no clips for easy removal, the head
activity ten minutes per hour on BiPAP may straps kept stretching out and lost effectiveness
keep me going all day. after a month or two. Another mask I tried was
the ResMed Activa - the latest thing in nose
B - no exercise masks. It has a very nice design that keeps the
A - 80 to 100 sit-ups three times a week using mask sealed with less pressure on the face. The
BiPAP, occasional half-hour bike ride. tradeoff is that it's heavier and the hose
connecting point is further out from the face,
B - 6'-2" 220 pounds, didn't want to measure meaning that side pressure from the hose is more
my waist. Too embarrassing. pronounced so it's more likely to try to shift. I
A - 200 pounds and wearing clothes I had determined that the ResMed Ultra Mirage mask is
almost thrown away. best for me. It's a small, lightweight nose mask
with a wide, adjustable forehead rest and headgear
Equipment choices… made of a wide material. Another important
A BiPAP S/T is necessary only if you feature is the snap-in strap buckles.
have central sleep apnea (CSA), otherwise a less
expensive spontaneous (S) machine will do Getting the settings right.
nicely. I don't have significant CSA, so my A good doctor or respiratory therapist may
have a good idea what your pressures should be,
6- 6 -
PPS MANAGER 6
but only you know if it's just right. I found that abdomen as well as general comfort. Then, a sleep
a pressure change of one increment makes a study would be best to determine the BPM. The
big difference. The following may give you an reasoning here is that you only have CSA episodes
idea of what it's about and help you discuss it while asleep and unaware of what's happening. If
with your doctor. a sleep study is not available, a very low BPM
The ipap setting is determined by how setting (8?) might be a good starting point. Then
weak your breathing muscles are. An ipap of 10 see if you experience panic awakenings or the
feels almost suffocating to me and I'm more usual morning headache and grogginess. Over a
likely to wake me up with a sleepy head while at period of days or weeks the setting might be
13 I don't sleep as long or as well and may have raised a little at a time until optimum effect is
the kind of mild headache you get if you reached.
breathe too much. Another sign of too much
pressure is lung discomfort. According to
Melanie, RRT at Progressive Medical, that Try doing without.
discomfort is a sign that lung damage may I think of the BiPAP as a muscle brace. It
occur. 11 works well all night unless I've lends support to weak muscles and allows me to
overdone it, in which case 12 works better. Of do more with less damage to polio weakened
course, your setting may be very different from muscles. (See "Brace Yourself", August 2000 PPS
mine, but you get the idea. Manager.) When it comes to any therapy that
Epap is important, too. It should be set produces good results, after a while I start
as low as possible because if it's too high you wondering if I'm doing well because of this
won't get enough CO2 and secretions out. therapy or because I'm going through a good
However, if it's too low you may have trouble phase. So, what do I do? Try getting by without it
with OSA. For me, 4 is perfect. or with less of it.
People with respiratory problems such as I tried leaving the ipap setting at 11
emphysema or asthma may require higher through good and bad days and found that the
settings. increase to 12 is a must. At 11, the aftereffects of
For people using an S/T machine there a bad day seemed to linger on and on.
are also adjustments for breaths per minute I also tired to go to sleep without it. That
(BPM) and rise time, or depth of breath. I have didn't work well at all. I realized that before
learned that you can hurt yourself with a BiPAP I had gotten used to barely breathing over
BiPAP if the BPM setting is too high. The a fifteen-year slow decline. Now, after getting my
BPM setting should be as low as is tolerable so out of balance blood gasses fixed, there was no
that the machine does not initiate every breath way I could fall asleep without assistance.
for you otherwise your brain will lose it's urge But, what if my machine quits working or
to start a breath, kind of like what goes wrong the electricity goes out? I accidentally answered
when you use supplemental oxygen. Since that question while dry camping when, due to a
frequency and depth of breath are closely series of electrical problems I was without the use
linked with the pressure settings, logic tells me of the machine for a night.
that the first step would be to set pressures and It was a bad night. I was repeatedly
rise rate while awake and laying down. A simple awakened by numb arms and hands caused by
starting point would be to shoot for a having to sleep on my side. I had to get up to
simultaneous rise and fall of the chest and urinate several times. I had bad dreams. All the
7- 7 -
PPS MANAGER 7
symptoms of sleep apnea including diminished The next thing I'd like to try is seeing how
mental function. it works on a bicycle. I'd feel silly riding around
The next day we moved to an RV park carrying a battery, BiPAP and hose leading to a
and I slept most of the day. It wasn't until the nose mask, but I'll bet it would make cycling more
following morning that I started getting back to enjoyable. Might even help me lose another ten or
normal. fifteen pounds. Of course, a stationary bicycle
That pretty much proved the point. I'm would be less embarrassing, but not as much fun.
vent dependent. The bottom line is, never give up trying to
be better. It's up to you.
Redefining limitations. --∞∞o∞∞--
In order to manage ourselves properly Writer seeks help
we have to know when enough is enough. Dear Friends:
Before BiPAP my first clue that I was I am a writer who is herself post-polio and
overdoing it was burning muscles. Whether is writing a book which combines my personal
walking, reading, or brushing my teeth burning experience with a social history of the disease. For
muscles forced me to rest. Proper ventilation a chapter I am writing about Sister Kenny, I am
changed that. I had to look for a new clue. hoping to interview anyone who had personal
I already knew that there is a sequence contact with Sister Kenny, or who appeared in the
of clues to overworked nerve/muscle. First 1946 film about her life.
burning muscle, then deep muscle/joint ache, If you would be willing to spread the word
then burning where muscle connects to joint, among those who attend your support group, I
and then aching/swelling joints. If I ignored would be most grateful .
one I was heading for the next. My contact information is: Anne Finger, 5809
After ten years of reduced activity Fremont Street,Oakland, CA 94608 or
muscle atrophy is to be expected. I don't expect AnnieDigit@mindspring.com.
to return to pre-PPS vitality, but so far so good.
What's next? --∞∞o∞∞--
I think I have the right machine, the
right mask, and the right settings. I use the
Provigil Problems?
machine ("hook up" as I call it) on the average I have three patients who had been given Provigil
7 hours overnight and one hour in the early by their family doctors to treat post-polio fatigue
afternoon. I also use it after nap every other with disturbing effects. They became excited and
day for about 20 minutes of sit-ups and agitated after starting Provigil. They then became
stretching. I also take it with me when I leave depressed. When the local doc stopped Provigil
home for more than two hours just in case I they became more depressed, even suicidal.
need a pick-me-up. This is all good, but it's not I would appreciate hearing from polio
necessarily going to stay the same over time. survivors, those with ME/CFS and MS about the
Helen Kent at Progressive suggests that it may effects (good or bad) and side effects of Provigil.
be possible that, although my CSA problems Many thanks! Dick
are minimal at this time, over the years I may Dr. Richard L. Bruno (email: PPSENG@aol.com)
experience increased problems and eventually Chairperson International Post-Polio Task Force
need an S/T machine. And, pressure settings and Director, etc.
may change over time. I must be ever diligent. MEETING REPORTS
8- 8 -
PPS MANAGER 8
Office at 1950 Franklin, 3rd Floor, Oakland, CA,
San Diego Polio Survivors 94612, (510) 987-4991. The cost of this 4-tape set
is $52.00. You may download the purchase order
La Jolla Group form at
http://www.crewnoble.com/kpwelness/purchase
The focus of the April 8, 2004 meeting was to .html.
review a few of the tapes of the September, 19, Kaiser members may borrow these tapes by
2003, Oakland/Kaiser Conference, Aging contacting 510-987-1000, Kaiser Permanente
with a Disability, The Late Effects of Polio. Multi-Media Library, 1950 Franklin St. 3rd Floor,
Gladys Swensrud, who had attended the Oakland, CA 94612. You may also visit Kaiser’s
conference presented a preface to the website at www.kpwellness.org.
presentations. Online members are encouraged to check
The first tape that Rick had chosen out: http://home.mindspring.com/~polio/ for
featured a polio survivor by the name of Hilary Abilities Expo, summer picnic, and regular
Hallam, Founder and Chairperson of the meeting information. The subject of the latest
Lincolnshire Post-Polio Network in England. member profile is your leader, Rick Kneeshaw.
Hilary did an excellent job of explaining the
stages of her life from first contracting polio as
____The next meeting:____
a small child in the 1950s in Africa – to
rehabilitating to live a fairly normal life as a Thursday, May 13, 2004
policewoman in the UK – to being diagnoses guest speaker:
with Post Polio Syndrome in the mid 1990s. Dr. Jose S. Lorado, MD., MS., FP,
Hilary’s presentation was extremely well pulmonary care doctor at UCSD
received by the group, and many at this ____________________________
meeting recognized her as a visionary with an
extraordinary ability to clarify how many of us Regular meetings are on the second Thursday of
feel in a way which others can easily odd numbered months at: La Jolla Village
understand. Should anyone like to contact her, Square Community Room, west of I-5 on
Hilary can be reached at: Nobel.
hilary.hallam@lincolnshirepostpolio.org.uk. For more information call Rick Kneeshaw @
Gladys then introduced the second topic 858-566-4016 e-mail piecon@mindspring.com
by explaining that Grace Young, herself a polio
============================
survivor, was an Occupational Therapist. Grace
would detail helpful hints about how to
NORTH COUNTY POST POLIO
rearrange things in your life to make living with SYNDROME SUPPORT GROUP
a disability a bit easier. There were a few in our
own group who had been evaluated by Grace Mary Clare Schlesinger led the April 13, 2004
Young, and they told of personal accounts of meeting as the regular leader, Mary Timmons, has
how Grace had helped them and how been ill but home and doing better.
wonderful her suggestions were. Announcements: The guest speaker for
June will be Dr. Bill McCarberg from Kaiser in
Tapes of the conference may be purchased Escondido, who will address the issues of pain
through Kaiser Permanente's Multimedia
9- 9 -
PPS MANAGER 9
surrounding PPS. CCI will be the guest(s) at trip to London and the excellent treatment he
the August meeting. received there with his special needs. The
Discussions included physical therapy, Londoners were very accommodating and made
the need for a post surgery advocate, the plight sure Bob was comfortable all the time he was
of Dolores Thompson (a San Diego resident) there. Bob also talked about a recent visit to a
in her quest keep her Iron Lung maintained, hospital and how the information supplied in the
the San Diego Zoo and how they Membership Book helped communicate with the
accommodate handicapped people. doctors and staff the special care he required.
An informal roundtable followed. Everyone Thanks Bob.
had a chance to speak on issues that were Meeting of April 9, 2004, even though it was
important to him or her surrounding Post Good Friday and Passover we had seven in
Polio. It was a general sharing of information, attendance. We welcomed two new members.
including doctors that have been effective in John and Norma Andersen of Palm Desert. We
helping Post Polio patients. talked about support groups and what we do in
(Condensed from notes by Gladys Swensrud.) the Coachella Valley. We also had Barbara from
Progressive Medical to do a few tests. Hoping to
____The next meeting:____ see more members before our summer break. The
June 8 Coachella Group will not be meeting in the
months of July, August and September because of
guest speaker the summer heat.
Dr. Bill McCarberg from Kaiser in Joe Camaya
Escondido Issues of pain surrounding PPS
____________________________ ____The next meetings:____
Regular meetings on the second Tuesday of
even # months from 1:00 to 3:00 at Joslyn May 14
Senior Center, Dorothy Boeger building, 728 June 11
Broadway, Escondido ____________________________
For more info. call Mary Timmons 760-738 2nd Fridays at 10 AM at Portola Community
0560 Center,45-480 Portola Ave, Palm Desert CA
or e-mail LaRosa1234@aol.com For information, contact
or MaryClare at postpolio@cox.net Robert Rose rsr@dc.rr.com phone (760) 321-7722
============================== Joe Camaya stan-n-ollie@msn.com phone (760) 365-
COACHELLA VALLEY 3587
POST-POLIO SUPPORT ==========================
GROUP HEMET AREA
POLIO SURVIVORS
February 12, we saw a video tape of Dr. Philip Hi Everybody.
Gold from Loma Linda University when he At our March meeting, Progressive Medical gave a
visited our group. We have a tape we can loan great presentation on the details of how and why
to members it they want to see it. nighttime ventilation can improve the lives of
Meeting of March 12, 2004 had thirteen nearly half of PPS people. Then they tested fifteen
in attendance. Bob Warnock talked about his people for breathing weakness. It was found that
10- 10 -
PPS MANAGER 10
of the fifteen tested thirteen would probably breathe it takes over. No wonder I feel alive
benefit from nighttime ventilation. Several will again.”
have already gotten machines by the time you Mike Mason of Comfort Mobility
read this. (Temecula) joined us in March. He helps clients in
The results of testing prove that working chair selection and insurance coverage issues..
together for better information, we can help We mourn the passing of Betty’s mother,
each other to a much higher quality of life. and of our dear member Evalyn Unruh, who
For a free test, call Progressive Medical. added wit and energy to our midst (and 30
800-491-2292 therapeutic rice bags!).
Have fun....Rick If you ever thought you might have even a
____Our next HAPS meeting is:____ minor breathing problem, don't miss the May 15
meeting. Melanie from Progressive Medical
May 19 will be giving FREE tests.
_____________________________
Regular Hemet meetings are at 11 AM to 12:30 on the
____The next meetings:____
third Wednesday of odd numbered months at: Sun Crew Meeting (workers)
West, 1001 N. Lyon, Hemet. For more info call Rick Sat May 1st 11 am at Judy's
VDL (909) 926-5492 th
======================== Saturday May 15
Riverside PPS Group FREE testing by Progressive Medical
By Judy Mahoney PICNIC
Several new people are adding more sparkle to Saturday June 26th
our group. We’re ready to be more outreaching
and effective. More of us are getting involved
11am until ???
in meeting prep, and there are jobs that require at Calif. Citrus State Historic Park 91 Fwy to Van
little but help big, like taking an article to read, Buren (east) to Dufferin (right). Music by Rick &
pencil in hand, noting ideas or info that would Eddie. Contact Judy re food etc.
be of value to the group. ____________________________
Business cards are handy to connect Meetings: third Thursday of even-numbered
someone you meet to polio resources. Our new months at 10 AM, third Saturday of odd-
card validates symptoms, counsels to numbered months at 10 AM. At the home of
“conserve,” and gives web and phone Bryan & Judy Mahoney, 3465 Ramona Drive,
resources. Riverside CA. For more info. contact: Judy
PPSRiverside@aol.com (909)788-9310 or Betty
Dale Gerdes brought Progressive
Medical brochures (more in next newsletter). McFarland (909)243-6991 bbooplink@aol.com
We welcomed back Dr. Don Compton, who ==========================
described his ventilator: “[Mine] is a PLV-100 Big Bear PPS Group
For information contact Marsha at
made by Respironics. It is a full multifunctional (909) 878-3092
ICU grade ventilator. I have it set to deliver ==========================
900cc of room air at 12 breaths per minute. It Victorville PPS Group
senses when you initiate a breath and gives you For information contact Doris at (760) 245-9058
the set amount. When my brain forgets to LETTERS
11- 11 -
PPS MANAGER 11
Excerpt for correspondence with Tessa Jupp ------
regarding the need for nutritional suppliments. Rick,
Hi Rick I really enjoyed the newsletter this month. The
Each of us has our own individual needs and article by Gladys Swensrud about living with PPS
these will change with time. We need to know gave expression of my inner feelings, thoughts,
how to keep up with these changes - and be the and hurts during my first year. I am now in my
masters of our own destiny. 15th year of my bout with PPS (my 5th year of
When I trained as a nurse in the 1960's being in touch with my body's needs and allowing
… doctors and nurses used nutrients and foods others to help me.) I have left my 2 year-old
as part of patient care. Now that they no longer words behind "I Can Do It My Self." Thank you
do we, the patients, better catch on fast as our again, Rick, for all your hard work in putting out
health depends on it. There is a lot more the newsletter and leading the group at each
research around these days to show why they meeting. I so enjoy reading about the experiences
work - rather than blind faith. Our own of others and find them very encouraging and
individual needs change with time and we need inspirational.
to know how to keep up with these changes - Anne
and be the masters of our own destiny. --∞∞o∞∞--
Best wishes for your group
Tessa Jupp
Information is the vehicle
[Look for more about Tessa Jupp's amazing that transports us
quest for proper nutrition and Post Polio
support in Western Australia in future issues] to a better life.
----- Rick VanDerLinden
To Gladys Swensrud and Rick VanDerLinden, --∞∞o∞∞--
Gladys, I just finished reading your article Thank you for reading the PPS Manager
"Lessons Part 1" [February 2004 PPS Newsletter. And, thanks for your help and your
Manager]on the internet and think this is one words of encouragement. Special thanks Sandy
of the best articles I have seen on the subject of Van Der Linden,
adjusting in a long time. I agreed with --∞∞o∞∞--
everything you said and understand so well. I The PPS Manager is published every other
also agree that one needs a good family doctor month by REVanDerLinden and is presented as
and I am fortunate to have one that refers me management ideas and is not intended as a
for whatever outside help I need. I am looking substitute for medical care.
forward to your next installments. To give financial help, make check payable to:
Could I have permission to reprint this RE VanDerLinden
and future installments in Kansas Connection, 34711 Lyn Ave
the PPS newsletter for the State of Kansas? Hemet, CA 92545
Thanks again Gladys for an excellent Financial status report available upon request.
article. Rick, you produce a great newsletter. To submit ideas, writings, or commentary, write
Keep up the good work. to above address or E-mail PPSman@aol.com or
Elva Suderman, Editor, Kansas Connection call Rick at (909) 926-5492
Related docs
