Probably possible MSA
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- 21st March 2019 at 2:11 pm #14971
My other half has been told there is little doubt that he has a form of Parkinsonism, ‘probably a possibility’ it’s MSA.
Watch and wait seems to be the order of the day, meanwhile there are aspects of his behaviour that I find frustrating, and the almost painful lack of conversation is hard to cope with. Meanwhile, if I told him I was having a heart attack I think he’d just sit and stare at me. I cry frequently in private. I feel like I’m losing my lovely husband.
Any advice on how to adjust will be gratefully listened to !22nd March 2019 at 3:55 pm #15019Diane BallParticipant
Hi there. I am so sorry that you feel so lost. Everyone reacts so differently to being ill and with getting a difficult diagnosis so it is difficult for others to comment on whether your husbands behaviour is just a form of denial – many people suffer with that. But as a carer you are doing all sorts of mental and emotional gymnastics about how things are now and what the future holds and it is a lonely place!
The watch and wait part of diagnosing MSA is just part of the game because there is no test to say definitely is MSA and it is important not to rule out other illnesses which may be more treatable, but it is uncomfortable – you feel you can fight something if you know what it is. If your husband won’t talk about it then find a friend who you can download to and the MSA Nurses will help – you can find out who covers your area on the website and then phone or email them. There are support group meetings around the country as well and even if your husband isn’t interested you can attend on your own to get some support and answers to question.
My husband had first symptoms in early 2012 and was diagnosed in 2013 so we were very fortunate. He is quite disabled now and his speech is very limited and I miss conversations but he is OK within himself and we have tried to make the most of what we could do whilst we were able!
You aren’t the only one in your position – I hope that is a comfort. There is another forum on Healthunlocked and there is a MSA UK and Ireland Facebook page as well where different people post.
Diane23rd March 2019 at 8:20 am #15023
Dear Diane, thank you so much for your kind and thoughtful reply. Your message is indeed a comfort.
I have joined the Facebook group already, and will look at Healthunlocked too. My husband has let me leak news of his health out to some chosen close friends (many of whom had already guessed that ‘something was wrong’ some time ago ) , but he doesn’t like being open about it, an element of denial is in the picture for sure.
I know he would be unhappy to let me go out and get support from a meeting on my own. It’s really difficult as that’s what I need, but it’s his illness…. a chat with the MSA nurse might well help – if I can get it under his radar – or I may have to consider a more brutal tactic of just telling him I’m doing it anyway!4th June 2019 at 4:44 pm #15294pcolunioParticipant
I know how you feel! My husband has done the same thing to me!
But this weekend I think I may have gotten through to him. We had a tiff. I explained to him that there are many ways a couple share intimacy. One is threw conversation. I compared this to not having sex. He finial got the message! Yes my Husband is an all American male and I love every part of him!
I hope this helps,
Patti5th June 2019 at 5:25 pm #15297
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