By Alan J. Smally, Patient Representative of the MSA Coalition
MSA is a multifaceted disease that presents differently in each person. There are similarities and differences in how the varied issues respond to interventions. In this blog post, I discuss issues that I have encountered and give readers approaches I have used. Some of the points will be basic and obvious to most, some may only pertain to a few, and some may not be affordable or achievable but hopefully each reader can pick up a few tips and ideas that will help.
If an early diagnosis occurs, the patient and caregiver may have difficulty accepting they are at the beginning of an inexorable downhill disease process. This is the time to do things that will pay off in the long run. Establish a relationship with a movement disorder neurologist or multidisciplinary clinic where you feel comfortable. Let your primary care physician know about the MSA Coalition webpage.
Discuss your general medical condition with your primary care physician to establish you can safely begin a program of vigorous, daily exercise. Begin a program that is safe for you. Your exercise program should be tailored to you, your condition and guided by a physical therapist (preferably one specializing in neurologic patients, if available) and/or a personal trainer, if possible. Consider joining a local gym or club to encourage your exercising. Online classes and exercise instructions are available. Exercise programs available for Parkinson’s patients are open to MSA patients, also.
Before MSA progresses, having a baseline level of fitness will pay dividends. This advice pertains to your care partner as well. Your exercise plan should be written and followed. You should be exercising 5-7 times a week, preferably with a companion, if possible. If your physician and physical therapist deem it safe, having a treadmill or exercise bike is great for aerobic workouts in inclement weather. Weights and exercise bands can be purchased to use at home. Exercise bands are particularly helpful since they are small, light and travel well (i.e. Therabands).
Yoga has many benefits. Many MSA patients along with others have back pain. My wife and I found chair yoga for back pain to be very helpful.
Enjoy life. Plan and do what you always wanted to do if it is feasible. I, by chance, retired about two years before MSA began. We had bought an RV and spent two to three months, twice yearly, exploring the USA. Much of the 150,000 miles we travelled was after my diagnosis. On the road, we continued daily exercise with Therabands, our weights, running and hiking. Eventually my disease progressed and we had to stop touring, but we are grateful we had the opportunity. We continue to exercise daily.
If you can, adjust your living situation early for a time when your mobility will be impaired. One floor living or motorized stair chairs might become necessary. A handicap accessible bathroom can be a tremendous convenience and at some point a necessity. The plan should be created by someone with knowledge of handicap design. The correct bed is important. Many MSA patients develop supine hypertension requiring sleeping with the head of the bed elevated. Split mattress, adjustable head beds function well for this. Getting in and out of bed can be very difficult. An inexpensive bedrail that slides under the mattress makes a tremendous difference.
The content provided in this blog is solely for informational purposes and should not be considered as medical advice. Readers are encouraged to consult with their healthcare provider or qualified medical practitioner regarding any medical concerns or questions they may have. Any product mentioned is only provided as an example, and the author has no financial interest in any product.
