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:
- 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).
- 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
- 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.
- 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 . . .
- 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!