I was diagnosed with PD 12 years ago at age 55. The diagnosis was a relief after all the strange symptoms for a decade before. During these years, I rarely mention my illness and have managed to take care of myself. My husband has also carried on as though nothing had changed.
Last year, after years of strange symptoms and numerous doctor appts. without any explanations, my husband was diagnosed with MSA. He is very early stage and at this point functions better than I do but we both know that his progression will be much faster than my own.
He complains about his symptoms from the time he wakes until bedtime. Everything is blown way out of proportion. He has given up doing for himself even though I know he can do more. He doesn’t acknowledge or even seem to comprehend that I work hard to take care of my own needs. I want to be helpful to him but I feel like he is taking advantage. It is especially hard because he didn’t want to acknowledge my own illness for so many years.
Yesterday I finally told him that I was sorry for his diagnosis and that I was trying to understand and be helpful but I asked him to stop complaining about the same problems over and over. I have also asked him to try to be more independent while he still can. He seemed to understand and said he would try but this morning we’re back to the same problem.
What to do?
I have one of those at home. Always complaining about this pain or that pain ( he has got pain) he thinks I am fitter than he is . (I have had PD for about 17 years) . Woe betide me if I say anything about a pain I might have and I only say it because if it is in a similar place to his I think it might help but no he tells me to stop bringing myself into it. It always has to be about me. .He is talking about his pain. Consequently I very rarely tell him anything about my PD unless I absolutely have to… I don’t like him coming to see the Consultant with me and that is only if he insists. It won’t be my appointment it will be his. Just as well my Consultant doesn’t put up with him.
Only now he has watched a couple of programmes on You tube does he know that you can have pain in PD and other symptoms… Doesn’t stop him though. I am lucky I have a son who I can talk to and a few friends. Now and again he will say he didn’t know I had this or that and I tell him he doesn’t listen so I don’t tell him anything. Since I was diagnosed I don’t take as much as I did. We have to think of our own health first and foremost.
Sorry mine was all venting and plenty more where that came from.
Best wishes Iris Love sharon
What to do indeed and I wish I had some answers for you. What a difficult situation it is and it must be disheartening having asked him not to continually complain etc he fell back so soon after agreeing to try.
This won’t necessarily help you but I wondered if the constant complaining was in some way bound up with having a worse diagnosis than you ie when you wrote ‘we both know his progression will be much faster than my own.’ In the grand scheme of things he hasn’t had his diagnosis long and perhaps he is struggling to come to terms with the implications of that and what it means for him. He may be angry, frightened even with complaining being the only thing he feels he can control. His apparent giving up may be part of the same thing or it may be a sign of some depression. I am guessing a bit here of course bit it doesn’t seem to be an unreasonable thing to think.
There is a support group, this is the link if you are not aware of them
who you may wish to contact, perhaps they could help you and/or your husband.
Any time you feel in need of a rant remember the forum, you can do that safely here and that we can do for you
I hope you feel a little better anyway for having written the post.
Thank you both for sharing your thoughts. I feel bad already for posting but there is really no one to talk with about this. We have been married 40 years and I love him more today than I did when we met. It’s difficult to see him like this. We have a difficult road ahead and I wish he could enjoy these months of relatively mild symptoms because we both know what is ahead. Right now, most of his symptoms are autonomic dysfunction, with mild Parkinson’s symptoms and mild cognitive impairment.
I have discovered the MSA trust website and it is very good.
We will keep working on this.
I’m sorry to hear about this new challenge. Just as a reminder, our helpline is staffed with kind and knowledgable advisers who are happy to lend an ear, and they can often connect you with resources you might not expect. Please do consider reaching out on 0808 800 0303.
With our warmest wishes,