Coping With Multisystem Atrophy

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 problem but it could be one of a 1000 neurological illnesses that have little known about them and that nothing can be done.As that year progressed (it was now Jan 06)my husband got worse he needed a walking stick then a pronged walking stick and then a walker.I got the name of another doctor and asked my GP to give us a referral. Again we went through MRIs, blood tests spinal tap etc.

This time when we went back the doctor showed me on the MRI what the doctors call the hot cross bun .I dont know on which part of the brain but there is clear as anything what looks like some one has put a cross similar to the iceing cross on Easter buns for all to see. The doctor had already done all the motor tests and reflex tests and blood pressure both in lieing and then standing positions and was already 90% sure it was MSA put once the cross appeared it confirmed it for him.We were told that to be more positive that my husbands brain would have to be looked at after death (autopsy which we now have forms and are about to agree to).

It will be 4 years this October and he cant walk or turn himself in bed bathe himself etc . I gave up work to be with him we get 9 hours help a week.He is on a program and he has been assessed by ACAT.He cant swallow that well and chokes alot but refuses thickners or having pureed food ( he wants quality over quantity of life )I cant understand him when he speaks but through signals and pictures and just knowing him well I managed to work everything he wants out.He is slowly deteriorating and noone knows how long he will be with us but I do my best to keep him happy .