The future of multiple sclerosis
One thing I realised was that I know lots about the current situation (and a bunch of stuff about the past) but I have not explored what PwMS think about the future.
So January struck me as a good opportunity to start a conversation asking a very simple question. “Are you upbeat about the future for People with MS?”
There are two ways you can help. First it would be great if you could take the poll below. It asks the question – “Thinking about today are you positive or negative about the future for the multiple sclerosis community in general and yourself in particular?” Secondly please use the comments section to tell us a bit more about how you see the future for the MS community. Good or bad. Or maybe a bit of both.
Thanks I really look forward to reading you comments and ideas.
I’m 55 years old, have primary progressive MS, am a teacher ten years from retirement, and I live in Canada. I’m positive in that I do see myself managing my symptoms in such a way that I’m able to teach until retirement, but I live in an area in which neurological health care is sporadic, at best. It takes months to get a medical appointment of any kind. I feel that I know more about MS than my neurologist or my family doctor, and I don’t say that with arrogance, but with despair. I suffer from fatigue that made it impossible for me to work five day weeks for several months; I can now work the five day weeks if I totally ignore everything that needs to be done at home. I tried to sell my split level home to buy a single level home with the laundry room on the main floor, but the economy here is terrible, and my home didn’t sell. I asked my family doctor to fill out the form for the tax credit for the disabled, in hopes of being able to remodel my present home in such a way as to make it possible for me to move my laundry room to the main floor, and she put on the form that my life is not impacted by my MS. As for the future, I’m grateful for all those fundraisers, as the medical profession seems to focus more on diseases from which people die, rather than diseases with which people must live. Some days, I’d like to just toss in the towel, but I’m fortunate to have the support and encouragement of caring and helpful friends. As a single person, daily life with MS is quite a challenge. (I’ve paid over $1500 in the past year for lawn care and snow removal.) How do other singles deal with all of those tasks they can no longer perform for themselves?