Here`s a question, don`t know if anyone has any thoughts, on MSA C. Apart from the mobility, swallowing, etc etc that MSA throws at us, are emotions an issue with any one? I don`t mean the uncontrollable laughing or crying, but expressing! Graham does not mention any pain, or anger, disappointment or frustrations, needs, or have any interest in anything. He doesn`t ask how I am, I have been off side for a few days, or what I`ve been doing on my day out, I`m not after plaudits just a bit of interest in something, and start a conversation. Everyone comments on the fact that he always has a smile on his face, but its not a smile as such always, but the way he moves/holds his face. Has MSA affected his brain in such a way that makes him this way? Or maybe I am just overthinking all this!!!
Sorry its a long question, but one of you out there may have something to say. Thanks
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mandg
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My husband passed away from MSA in july 2023,diagnosed 3 weeks before,he passed away,he was the same as you described,he was in hospital for 5 months,I visited every day,did everything to make him comfortable,but he didn’t asked me how I was during this time,he was normally very affectionate and caring person, it is very interesting now,sharing the same feelings with someone after 7 months,ensures that I am not alone .
Although my wife has MSA-P she is pretty much like Graham.
L does not worry about being involved in conversations and certainly doesn't start any.
She seems to coast along in her own little world neither happy or sad. There is uncontrollable laughing but it can seem automatic at times rather than an emotional response.
Doesn't mind if we go out or stay in, if we have lunch or miss it.
I'm sure many will understand what it's like for you, and as a carer it can be quite lonely at times.
Like you I would like more ( or any ) feedback, but it doesn't seem to come.
You say has MSA affected the brain, I've wondered that as I feel more like a carer than a husband sometimes.
You're doing your best, you can't do anymore than that and I'm sure Graham realises that most of the time even if he doesn't say anything.
Thanks for the replies. Yes Derek, that sounds very similar, it is lonely sometimes, and like you, just feel like the paid carer. I`m glad in a way that its not just Graham then. Small consolation.
I feel for you as I am sure many others do not just those who reply to posts. I can only share my experience with my partner’s very recent probable diagnosis. I feel his personality has changed a lot and I daily try to adapt as best I can. Sometimes there is some interest in things sometimes not. It’s very variable. I can’t read facial expressions much of the time unless it is obvious laughter. The ropinirole has stopped the overly emotional laughter or crying that he felt difficult to manage. What I can say is there is a lot happening that I don’t recognise and I am just trying to take things one day at a time. He actually has a lot of functionality but the head/mind changes are difficult. I try not to take things personally. I also have my own head challenges of a different sort and so I’m mindful of that as well. Just sharing my experience and hope not to cause any offence as very new on here
Goodness, you could be describing my husband! He sadly passed away suddenly just before Christmas and is obviously very much in my thoughts right now.
I go over and over things in my mind, and one of the most prominent things is how he appeared to face up to his illness without complaint. But then I think about it and not only did he not complain he didn't 'request'. He never asked for anything, but just chose from a list of suggestions. He didn't start conversations, but joined in once started. He didn't ask to do anything, but appeared to enjoy things set up for him. And he definitely wouldn't ask how I was or if I was alright. ie. when I came home exhausted from shopping at the supermarket, struggling with bags (I'm waiting for knee replacements), he never even acknowledged I was back! This was so out of character for him as he was so loving and caring and was always on the go doing everything for me.However he would always raise his concerns about me to district nurses etc when discussing his care, which was very strange.
Sometimes out of frustration I would tell him that he didn't ask how I was or show any interest in me, and he would apologise and say he didn't mean it and did think of me. I think it was part of the 'unable to start conversation' thing rather than not being interested or caring?
It's easier for me to think clearer about things now that I'm not exhausted being his carer., but at the time it was hard to accept. I feel greatly for you, going through the same angst, but I'm sure it is all part of this dreadful disease. Whilst we still have our loving partners and thankfully they do not have dementia issues, we almost need to press 'play' to get any response.
I can't think of any advice to give you, apart from don't take it personally. I'm sure your husband loves you dearly, and appreciates all you do for him, but is unable to express it voluntarily. Thinking about it in hindsight, perhaps I should have made time to sit with my husband and tell him about my day and how I was feeling, as I really think he would have responded. But at the time, I was obviously heavily invested in him and his needs, that it would have seemed indulgent . Perhaps that could be something you coild try whilst you have the opportunity ?
My thoughts sre with you as you go through this journey together.
Thank you Maureen , it seems I'm not alone on this. I think I should spend more time just being with Graham and be patient in getting a response. Like you say do it while i still have the opportunity.Best wishes
The behaviour you describe is the same way my husband has become. He is often just not engaged. He seems to be happy thankfully but does not express any emotion usually. I like you ,feel so lonely at times, our husbands are with us physically but not as they were and we miss them! It is so sad.
This is such a difficult condition to cope with as a carer, I often feel at my wits end.
I wish you all the best and send you my best regards.
hello I have MSA-c and i dont think it has affected my emotions in the way you are asking. I dont mention my pain and hide my emotions when I am out but that is just my choice. However everyone is different so you could be right.
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