I bet if a survey was taken of all MSA sufferers, most, if not all of us, would admit to spending some time when we really felt sorry for ourselves and wondered why we were singled out in such a small percentage of the population, (roughly 3 people in every 100,000) to contract MSA. Certainly, I’m no different than all other MSA’ers and have had my share of “rough patches.”
When I occasionally hit those patches, one of the things that puts it all into perspective for me is a visit to the MSA Support Group’s Forum (shy-drager.org) where I can read the comments, experiences and suggestions of other MSA’ers or their caregivers.
For example, whenever I’m feeling down about my limited mobility and my need for a wheelchair or a power scooter to get around, I read about someone who spends most of his/her time in a bed, being able to get up for only brief periods into a special recliner, when I realize that I too could be bed-bound and, I understand - it could easily be worse.
Next, I’ve always prided myself on having neat handwriting and printing, and now I can’t write legibly anymore and Fran has to fill out everything for me. It’s easy to feel sorry for myself, then I read about those poor souls who need a writing tablet or a special communications device just to list their needs or express their thoughts and I understand how - it could easily be worse.
And, when I complain about Fran cutting my food into small, bite-sized pieces to aid my swallowing, I read about people who can only ”eat” bland paste through a stomach feeding tube, so they don’t aspirate food particles into their lungs. The reality that some MSA’ers can’t even taste basic foods also makes me realize how – it could easily be worse.
So I guess what this blog post is encouraging for all MSA’ers, especially those of us that need an occasional “dose of reality,” don’t hesitate to visit shy-drager.org and sign up to start receiving messages from people who may guide and otherwise help you handle MSA so – it doesn’t have to be worse.
Note: There is a “link” to the Shy-Drager Support Group under Web Sites in the right margin of this blog.