I have been diagnosed with MSA-C for half a year now and since February I have been consciously doing something about the decay. Of course it’s hard to motivate myself, because it’s like a fight against windmills. I have to do a lot of work “just so it doesn’t get much worse”. That is of course frustrating. I often think that if I had done so much while I was still healthy, I would have a perfectly trained body. And then there are the exercises of speech therapists and OT which really cost time. But I have time now…
I intend to do my exercise program every day, plus every day something in the household, like sorting out my wardrobe or cleaning the fridge – and the day is filled with it and over. People ask me what I do all day since I stopped working. Well, maintain my beaten health. It doesn’t get boring. And since I get out of breath very quickly, everything with breaks and that takes time.
Of course there are days when I don’t feel like moving. Then I stop and stare stupidly into the television, then I need something which distracts my brain. I am in pyjamas all day long and eat ice cream (all this has been a secret until now). I think that has to happen sometime. But the next day I still feel guilty.
Whether all that is useful? To be honest, I don’t know. My neurologist is satisfied with me. She says it could be much worse. Besides, I know other patients who are about my age and stage, and they are in terribly bad condition. But I also know patients who have been struggling with MSA for years and do their exercises diligently on a daily basis and are in the same shape as I am – or hardly worse.
Of course, the decision has to be made by everyone for themselves, I think these exercises are good for me, going for a walk every day is good for me – also psychologically. I recently rode my home-bike for 30 minutes, now I won’t do that because I’m afraid that I’ll fall off.
My own gym in the living room
These things you can buy all for little money on the Internet. And you can be inspired by PT and ask your trainer what exercises you could do at home. Yoga on DVD is also good (beginner mode). Many exercises can be done sitting down, even lying down.
My blood pressure is better than it was in January and the hot, painful feeling from the thigh has disappeared. I adress it to training. And I know what happens after a break of two weeks: loss of appetite, weakness, digestive problems, sleep problems, sluggishness.
Surely giving up becomes a topic later, one resigns. I don’t even want to think about it today. In any case it applies to now, which went yesterday, must go today too.
Photo: schiffner / photocase.com