My Summer was a Roller Coaster Ride – Part 2

In Part 1, published September 12, I wrote that my wild roller coaster ride this summer came from four intense, parallel experiences. I addressed the first two in Part 1. Today I am addressing the third:

Coping with MSA Symptom Changes

My Multiple System Atrophy has been on a roller coaster ride all by itself. Existing symptoms change; new symptoms arise. ‘Coping with MSA’ means handling or managing each symptom successfully. New or changing symptoms increase the coping challenge. During the summer, my wife Valerie was mostly available to help me define good coping strategies. But at the end of August, Valerie was about to resume her full-time high school guidance job. How will I cope on my own?

The following briefly describes each of the many and varied MSA-related challenges, and summarizes how I tried to cope with each:

  1. My neck muscles weakened – my ‘head drop’ was constant and debilitating.
    Coping: My good physio friends, Rebecca (Toronto) and Barb (Red Deer, AB), combined to give me a new (to Ontario) neck brace that is helping my neck and my voice (see photo at right).

    Headmaster Collar

  2. I lost 20 pounds this year, resulting in weak arms due to loss of muscle mass.
    Coping: I am on a ‘steroid’ fruit and veggie smoothie routine (adding protein powder and greens), + bigger meals + snack-grazing through the day
  3. Swallowing is getting worse; swallowing saliva at night causes choking fits.
    Coping: Smoothies and softer foods are helping a lot; a nutritionist in our GP’s holistic medical practice provided excellent advice and ongoing support; nighttime choking is inconsistent.
  4. My speech had a setback, despite the continued efforts of My Circle friends.
    Coping: I’m increasing my speech sessions to 5 a week, where possible. Phone calls are difficult – when I shout, my speech is clear, but . . .
  5. Mobility and balance are getting worse – I could no longer shower myself safely.
    Coping: We called the provincial agency (CCAC) that controls access to funded   community health care services. Given my situation and age (66), they responded quickly and very thoroughly with:
    • 7 hours of Personal Support Workers (PSWs) per week,
    • physiotherapist services, resulting in an excellent, focused exercise program
    • occupational therapist services, resulting in engagement of a health care supplier to deliver a comfortable push wheelchair
    • referrals to a more hands-on physio outpatient approach, and to a local clinic for power wheelchair motility and assistive communication device assessments.

As symptoms change unpredictably, I find myself constantly adjusting to ‘New Normal’. Although this can be very frustrating and tiring at times, I keep reaching for new ways of coping and quality of life. With Valerie at work, I have lots of support – my PSWs in late morning, a Circle friend for speech exercises, choir practice and bridge weekly. Even with that level of support, I am often at home alone. However, I do need some ‘alone’ time to work on the computer; such as writing this blog, adding to my family tree, and keeping up my email.

Just prior to my regular neurologist visit 2 weeks ago, I updated my symptom and treatment history in my PatientslikeMe.com database. As part of that update, I answered about 15 questions in a Quality of Life survey. The results: Physical: Bad; Social: Good; Mental: Best.

I have one more symptom change to report, but I didn’t include it above since there was no coping necessary. This is definitely one of the ‘highs’ of my roller coaster ride – I’ve been PAIN-FREE for several months now, and that’s happening without any drugs!

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10 Comments

Filed under Blogging, Communication Circle, Family, MSA, Speech, Symptoms, Travel

10 responses to “My Summer was a Roller Coaster Ride – Part 2

  1. Steve Rivers

    Hi Paul…this is Steve Rivers, the uncle of Michael N., friend of your son….we spoke briefly (or exchanged emails, i don’t remember which) a while ago. I’ve just visited your website for the first time and am really impressed: you’ve done a great service to fellow MSA sufferers. Kudos! Just wanted to say hello and that I think of you from time to time, even though I don’t really know you personally. Interesting how a common fate engenders sympatiko…
    Cheers.

  2. Dominique Nass

    Hello Paul, you are truly an inspiration. My brother was finally diagnosed this year and I think of you as my light to help me help him. He looks a lot like you, is 62 years old and was still playing squash for South Africa Veterans in 2008. Having been a competitive sports person all his life, he is fully committed to his therapies and I believe his determined and stoic nature will help him on a daily basis. We live on the coast in Durban, South Africa and have only experienced Parkinsons and Lou Gehrig’s disorders in our lives. MSA is a whole new experience and we are collecting ‘angels’ to support us. Thank you again for sharing with us your authentic heart. Dominique from Durban, SA

  3. Barbara

    Thank you Paul!
    All this information is vital to us.
    Our best friend was diagnosed in July, but like you, probably had it undiagnosed for about 5 years.
    She is now in a sub acute rehab, habing been in a hospital ICU since May 29,2011.
    There are two of us tending to her health care issues. Sharon & myself.
    Wevaytemded the MSA conference Oct28-29 in Dallas, Texas.Learned quite a lot and met so many others like yourself & other caregivers.
    It’s a terrific organization. I imagine you are in touch with them, as well.
    I will check in from time to time just to stay in contact.
    I send you loving light!
    You GO! Beat those odds!

  4. Hi Pual,
    i run in to your blog by mistake, looking for some information on MAS for my father. and found it very inspiring and helpfull. my father was diagnosed with MSA about 3 years ago, and he is having more or less the same symptoms you mentioned. his main problem now is with his speach, his voice is very low and it is very hard for him to speek and for us to understand. i was wondering maybe you have some idea/or can share your own experiance on how to best communicate at this time.
    it was very helpfull to read about the way you cope with every symptom and we actually took some ideas from that to help dad (neck collar)…
    again it was very intersting to read your bolg.
    Thank you and hope to read some more…
    Inbar (and Dad Yehuda) from Israel

  5. Soryl

    Your courage and good humour are inspirational. As the spouse of a neurologist who was diagnosed with MSA almost 2 years ago we are all too aware of the course this disease can take. Unfortunately we live far away from most of our support system. And so one copes as best as one can. Each day holds challenges and successes. I am convinced that staying as physically fit as possible will slow down this progressive disorder and so I have committed to getting us both to regular workouts (solidarity). I try to prepare wonderful meals for as long as they can be enjoyed and will take face the needs as they arise. Forward planning is important but forward worrying is not helpful.

  6. Kathleen

    keep fighting the battle. I unfortunately lost my mother earlier this year to MSA. She only had 10 months from diagnoses. It is a horrendous illness and so unpredictable.

  7. Edwin Theriault

    I was diagnosed with MSA in the fall of 2011. I think my onset of symptoms was about 4 years ago. I am trying to use the internet to make more people aware of this disease. I woulk like to hear more about your symptoms and how your dealing wih them

  8. Hi Edwin
    Like you, my husband was diagnosed with MSA in November 2011 and we both believe he had symptoms at least 3 years ago, and perhaps even longer. Larry has accepted the diagnosis, but remains active in his career, hobbies, family and focuses on what he CAN do. I witness Larry’s physical health deteriorating he lost at least 40 lbs in the the last year. His tall 6’3″ frame is thin and his legs are particularly weak and “spindle” like. I worry about his legs in particular as they seem to be losing strength at a rapid pace and they appear very rigid. His symptoms seem to happen in “waves” where he has no symptoms for hours or even a day; then all of a sudden his balance is extremely poor, has difficulty swallowing, strong tremors on both sides of his body and a voice that is slowly but steadily losing strength and volume. Also, his body temperature gauge has changed dramatically and he is complaining about how cold he is even when it is toasty warm inside the room. I have purchased an electric blanket and that seems to help him a lot.

    The other night, I had to lift his legs off the floor when he got into bed. I cannot tell you how horrible I felt for him experiencing such a helpless situation! It was almost like his legs were paralzed and felt heavy and lifeless as I lifted them off the floor. The next morning, this symptom was gone but his balance was still off and he was shuffling slowly around the house. It has become a nightly symptom that Larry struggless just to change his position in bed. I read that it is important for people with MSA to change positions in bed, so when I wake up during the night, I help him adjust. I never know what to expect and I am getting better about keeping my emotions intact and being strong for my husband. He is a brilliant man and holds a PHD geoscientist degree and fortunately he is not lost his mental accuity and his love for his career. I feel his passion for his career, family and his newly acquired Grand Banks has made a huge impact on his battle with MSA. I want him to WIN and I am reading everything I can on MSA and will never give up. I feel that if I share with others we can all learn, support each other, and find the cure together.

  9. Edwin Theriault

    Hi Teri

    As I said before, I was diegnosed in the fall of 2011, with MSA-c (cerebellum), witch is supposeidly the worst kind. It is not affecting my ability to think clearly,
    although my short term memory is slighlty affected, but I think that is do more to
    my age than anything. I am 67 years old at the presesnt time, and I always though
    that I would live to a rip old age, now I can live to a rip old age with MSA. I find myself thinking of thing I want to do, but my body just can not respond properly.
    I always prided myself as having fine motor skills but, all that is out the proverbial window now that I have MSA. This can be very frustating at times, to say the least. My symptoms at the present time are as follows: Poor balance, slurred speech, body movement, reduced feeling in my finger tips, reflux, poor handwring, tire easily, weak muscles, muscle co-ordination is poor, difficulty swallowing, ankles swelling, constipation and bloating, sinus ploblems and post nasal drip, urination problems and urinary infections, drooling at night, memory loss (short term memory), startle reflex is getting worst, tingling in hand and forearms, re-occurring dreams, I get up 4 or 5 times during the night to urinate, very thirsty during the night, sometimes I get dizzy when turning around to change direction, swelling from the knees down (both legs), I get dizzy when looking up or to the side where I loose my balance and fall, my nose runs every time I eat, and in June of 2011 I was diagnosed as having Type 2 Diabedes.
    As you can see my list of symptoms, far outweigh my abilities to combat them, but I will keep on trying for as long as I can. I have a prayer that I say every night before I go to bed for all the MSA cargivers and patients. Dear Lord, plesease give me the -Mesns to change the things that I can, the -Stenght to accept the thing that I can not, and the -Ability to recognize the differance, and please Lord, let me -C- tomrrow. (MSA-c). I will fight this for as long as I can until my time is up, and I hope I come out of this victoriously, if the Doctors and Recearchers can find a cure in my life time.
    My number one thing on my list of things to do before I go is,I vowed to make as many people in the word as I can, know about this horrible disease. This disease strikes people in there mid 50s to late 60s. As much as I hate to say it, you could be next.
    It is my hope to reach out to as many people in the world as I can, and make them aware of this disease, though today’s most powerful tool, the Internet,as
    anyone could be the next victim.

    Please pass the message below to everyone on your e-mail list, and e-mail me at,
    utheriault@comcast.net, if you received it. Thank you in advance for taking the time to read it, and passing it on.
    Ed
    ——————————————————————————
    12/01/2011

    I Have a Dream
    My name is Ed I’m 67 years old and I’ve recently been diagnosed by the neurological team, at Massachusetts General Hospital in Boston as having a disease, little known to most people, Multiple System Atrophy cerebellar type, in the “possible” category of certainty. This disease does not have a known underlying cause, but it is a progressive neurodegenerative disorder that affects the cerebellum, brain-stem, basal ganglia, and autonomic nervous system. This disease is very rare only about 350 people in the whole world have it, and I’m one of them. The symptoms of this disease are irreversible, and there is no known cure for it.
    The prognosis is death in 7-9 years from onset, and I’ve had the disease for approximately four years now so, that means I have approximately, 3-5 years to live. The number one thing on my list of things to do before I go is, I vowed to make as many people as possible aware of this terrible disease, before my time is up. This disease strikes people in their mid to late 50s to mid 60s. As much as I hate to say this, you could be next.

    If you Google Multiple System Atrophy or M.S.A. Day you will be surprised at how much information there is on the Internet about this horrible disease, even though it is little known to most people and most doctors. The only way doctors can tell for certain that one has M.S.A. is post mortem, by looking at one’s brain cells under a microscope.

    It is my hope to reach out to as many people in the world as I can, and make them aware of this disease; through today’s most powerful tool, the Internet, as anyone could be the Next Victim. Please send this message to everyone on your e-mail list, and if they send it to everyone on their e-mail list, it will go around the world very quickly, and maybe some lives could be saved. Who knows, it could be Your Life. Thank you in advance for your patience, and for reading this message and passing it on.

    Ed

    Donate with a check:
    SDS/MSA Support Group
    8311 Brier Creek Parkway
    Suite 105-434
    Raleigh, NC 27617
    Please make checks payable to: The SDS/MSA Support Group

    Sincerely
    Ed

  10. Anonymous

    you are all very brave,my hudband has msa been ill for 2 years finds it very frustrating.we live in hope that research will find a cure or a medication that can help all of us. colleen scotland