Multisystem Atrophy

[livingwith]

My husband first noticed some thing was wrong when he kept falling over for no reason and feeling dizzy. This was in October 2005 and the doctor first thought it might be some thing to do with his middle ear and sent him to see an ear, nose and throat specialist.When everything there was fine but he was still falling plus a little unsteady on his feet. The doctor thought it was time to see a neurologist.
We went, we had MRIs ,blood tests for everything imaginable and were told that there is a p...Read the full article

[mary malone]

Hi Lina
My name is Mary my husband too has MSA - the Parkinsons Plus variety, he started with his condition in 2002 and initially we all thought it was due to stress at work. At first he was diagnosed with Picks disease but I kept feeling that he had some Parkinson type symptoms. Then in 2006 we went back to the Consultant and after more tests it was diagnosed as MSA. Jon(my husband) has got progressively worse. The condition "dips and dives" which makes it very hard to plan care etc. One week he can be walking around then he has to be watched constantly as he can fall and injure himself, which he has done in the past, knocking out a front tooth, fracturing his spine on one occassion and some very deep facial lacerations. He has lost a lot of weight and he too wont take any supplements. He manages to eat but very slowly and needs help with feeding which he hates otherwise more food ends up on the floor than in his mouth. He has a wheel chair which we use for transfering on the "bad days" - which seem to be increasing. I have just had a standing hoist delivered which is supposed to make life easier but I am finding it very cumbersome to use in a domestic setting. I am sure that they must be brilliant in a hospital with wide corridors etc. Jon's speech is now almost incoherent.Like you I can often work out what he wants, at other times I just guess.
I am fortunate that I work as a nurse 3 days a week and Jon goes to a day centre on one of my days off. I would go mad if I was stuck at home all day. I get so exhausted. I feel trapped. Then I feel guilty because he is the one who is ill not me.I
I am lucky that I have good friends who visit, Jon's brother lives nearby and so do my two daughters. They are so supportive but not able (for various reasons which I wont bore you with) to lift or move Jon so I darent leave him with any of them for more than an hour. If I am honest, and this is a dreadful thing to say, when Jon is going through a "down" patch I find it easier in some ways because at least I can leave him while I cook a meal, go to the bathroom etc safe in the knowledge that he cant get up and fall.
He is very unrealistic about his condition, wants to know when he can drive again! Some days he gets very aggitated as he wants to go to work and tries to leave the house.
It is nice to know that there are other people out there who are coping as well in similar situation.
Do you ever manage to have a break away from every thing to recharge your batteries? You dont mention your husbands age . Jon is 63, so young. How on earth do older partners cope with this?
Mary