Coping with ALS by BHx6YB1


									                                 Coping with ALS
                                 by Loris Buccola

        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 NaturallySpeaking, 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. 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,
        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 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 yourself 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.
 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. ALS is deadly but not serious.
   Seriously consider antidepressant medication. It is not addictive and it
    is not a weakness to need medication to help out with the symptoms of

(4) 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
 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, etc.

Loris Buccola
October 2005

Loris Buccola was a person of strong faith. He died in 2006. While ALS ended his
life earlier than anyone hoped for, he was never defeated by ALS. Loris lived
each day to the fullest and reveled in the love of his friends, family, and
community. His spirit, outlook, and message of hope inspire us all still.


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