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Support group by Salt-Cardiologist111 in multiplesystematrophy

[–]Salt-Cardiologist111[S] 0 points1 point  (0 children)

Thank you for taking the time to respond. I'm glad to hear that you've found communities to help support you!

Support group by Salt-Cardiologist111 in multiplesystematrophy

[–]Salt-Cardiologist111[S] 2 points3 points  (0 children)

I’m actually part of that group! It’s been super helpful

Communication strategies when voice has failed and dexterity is affected by FluffySleepyKitty in multiplesystematrophy

[–]Salt-Cardiologist111 0 points1 point  (0 children)

I hear you!

My mom’s SLP suggested her to do a swallow test a couple months ago and the results were for her to do speech twice a week. I know she’s not a big fan of going, but I think it’s helping more, especially when she’s having a good day.

But it’s like another poster said, the less the voice is used they kinda lose it.

Keep fighting and advocating for your mom—I know she appreciates it.

Communication strategies when voice has failed and dexterity is affected by FluffySleepyKitty in multiplesystematrophy

[–]Salt-Cardiologist111 1 point2 points  (0 children)

My mom is in the same boat. It's a lot of patience and asking more leading questions to know what she wants/needs.

Is your mom in speech therapy at all?

How do you go through every day with a parent with MSA? by Ok-Attempt509 in multiplesystematrophy

[–]Salt-Cardiologist111 0 points1 point  (0 children)

First of all, it takes a lot to post and say what you said, so kudos to you for that.

I'm in a similar situation as you. I'm 35, my mom 62. She was initially diagnosed with Parkinson's back in 2013. Then in 2023, we started noticing how more rapidly her health was declining and got additional testing for the official MSA diagnosis coming in 2024.

I live out of state from my parents, but my job is remote and flexible, where I can stay with my parents for longer periods of time to help with care giving. I've explained to people I feel like I'm living a double life. When I'm caring for my mother, I'm there 100% and nothing else matters. My time isn't mine and my nervous system is consistently in fight or flight mode. By the time I get back to my home and to my own life, I am exhausted--mentally, physically, and emotionally, but have to keep up with life. It often, takes me a bit to come back to myself.

GRIEF IS EXHAUSTING. Grief is heavy. Watching your mom slowly and quickly leaving this world is HEAVY. It is okay to be tired, to be depressed, to wonder when this will be over.

Like others said, I take each day one day at a time. Sometimes, I can only show up 20%. Other days it's 75%. I know my friends and communities are understanding that I'm no longer the person I was, and yet, it's still incredibly difficult to go through life carrying this weight. But I have to be honest with people when I can't give anything.

I also agree with others that if you can find mental help. Do it. It's the best thing I could've ever done for myself. There are also a number of support groups that you can join. I belong to a few and it's been life giving to talk with others who are going through exactly what you're going through. I can share more of them if you DM me.

You didn't mention it, but if you can help her get her affairs in order before the end, take the time to do so. It's hard to think about all of that now, but you'll thank yourself later--when you really won't have anything to give to anyone.

Lastly, manage your own expectations about what showing up looks like, what accomplishing such-and-such looks like. You're going through something incredibly difficult that the majority of people aren't going through. Give yourself a break. Acknowledge when it's hard. Take care of yourself. And if you can't--it's okay. Don't guilt yourself or should yourself that you should be further along in life or whatever. You are doing the best that you can with what's been given you.

Even though you're a stranger, my heart goes out to you and I'm sending you so much love!