Coping With Multisystem Atrophy

My husband Jon has MSA he is only 63 and symptoms first became apparent 7 years ago. His condition fluctuates but is declining. At the moment he is unable to stand or walk without help and spends a lot of time sleeping. He needs help with feeding which he hates and can be quite resistant. When he is more mobile there is then the constant fear that he is going to fall and he has to be watched all the time. He fractured his spine 3 years ago, has knocked out a front tooth earlier in the year and onn several other occassions has aquired lacerations requiring stitches.

This is quite exhausting for me and at times I feel very low and trapped.He has become incontinent over the last 2 months which is degrading for him and in spite of various incontinence aids the washing machine is on most days. Although he has lost a lot of weight(now 8 1/2stone)the rigidity and spasms make it very hard to lift or move him even with lifting aids. We are lucky to have friends and 2 daughters who live nearby. I also work 3 days a week and Jon has a lovely carer who looks after him on these days. He also goes to a day centre one day a week which he hates but it gives me 5 precious hours a week.

A local volunteer agency come 2 Sunday evenings a month so I can go for a meal or visit friends. I shouldn’t complain as he is the ill one and we have a lot of support, but we are both still young and at times I find it very hard especially when he is so unrealistic about his condition. I wonder how other partners cope with this cruel condition.In some ways we are lucky that I am a nurse and still physically able to look after him.