An online friend, Aletta, who has multiple system atrophy (MSA), posted the following recently to an online support group. She
has lived for nearly two decades with MSA so maybe there is
something to her advice!
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Posted by Aletta
February 7, 2012
to the PSPinformation online support group
Personally I think much more needs to be done to help us live with the devastating symptoms, and to help slow down or even halt the progression of the disease to where we can have near normal lifespans.
So do a lot of reading and if you see something you want to try find a doctor who will let you try things and will monitor you thoroughly. If I had just sat back and taken this illness I would have been gone by now, and I really want to live to be eighty more than anything. I can’t be too unhappy with how it has gone until now, I am a few years past my expiry date, and still able to type and send you posts. I spent my weekend with my grand-kids already 8 and 6 years old, I almost did no live to see them at all. Find people who live longer than others, find out what they did and try doing that also. Never assume because a doctor read in his old textbook that you now have a lifespan of 2-8 years that this is gospel, it is not. Sadly believing something can result in the self fulfilling prophecy you might give up and dread the future, become depressed, and give up. If you have the will to fight and the desire to make every minute of what we have left count, just go on – enlist those who love you to help you out with it and decide on what you want to do and find a doctor who understands that, Ask lots of questions on groups like this one, find what works, what does not.
Look at the limitations you have and construct a different life reduce stresses, get lots of rest, learn to say no so you do not overdo it and find ways of filling that time at rest with laughter, books on tape, container gardening, art, crafts, music, whatever makes you happy and spend the time you have a with some energy being with those you love. Find some things that might help and are otherwise not dangerous (in my case cinnamon, flax seed, senna tea, video games, laughter, walnuts and blueberries) and have them often. Very importantly spell out what you need to those around you, they are not psychic.