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Disease progression, how do you deal with it?
As many of you saw, our community is grieving the passing of our forum moderator, DeAnn Runge. DeAnn was a great advocate for SMA but an even greater friend and colleague. I appreciate your patience as I learn to navigate the forums without her. Her absence is palpable, but I know she would want us to keep the conversations going.
Before DeAnn passed, she had one topic ready to share but never got the chance. Her insights and willingness to share her story so openly have sparked many conversations and helped us all at some point. So, today, the SMA News Today team and I would like to honor her memory by sharing her thoughts one last time. We’ll never forget DeAnn’s contributions here and in the SMA community as a whole. Let’s keep the conversation going in her memory. Thank you.
How do you determine and deal with disease progression?
Sometimes it’s hard to gauge between progression and a bad day. So many factors contribute. Things like the weather, clothing, positioning, nourishment, weight gain, treatment status and effectiveness, general health, and even who’s helping that day can all play a part. When I’ve considered all the variables and signs that still point to progression, I can’t help but feel a little defeated if I dwell on it though it doesn’t do me any good.
Everyone has their way of dealing with disease progression.
How do you handle it?
I tend to ask myself a couple of questions. Is there a tool or alternative way of doing it that would make it easier? Can I still get it done even if it takes more time and effort? Is it worth more time and effort? Sometimes the answer is yes, and sometimes it’s no. If not, I decide if it’s something important enough to ask for assistance. When I figure it’s not worth it, I just need to let it go.
Usually, I find other things to fill those empty voids. Not doing my hair and makeup allows me more time to work on my nails. I can’t bundle up to go ice fishing, so I’ll stay in and enjoy a movie. It’s not always easy to give up things that frankly make us feel human. But that’s what’s great about humanity, there’s a broad spectrum to fit into.
Where do you fit in?
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8 Replies
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Another thing I struggle with – is my loss of function part of “the normal aging process”?
Now that I’m a senior citizen, there are things like arthritis and osteoporosis that many people my age experience. The arthritis especially complicates my SMA disability. I try not to grieve “growing older as a disabled person”, but it really hits me hard some days. (I know I should be very thankful for living much longer than many with SMA, and I am…..but… I’m also human.)
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I like what Chris Young is doing in his old age. He is many episodes into a podcast on YouTube called Contemplating Life. There is a lot of reminiscing, funny stories, and interesting tidbits. I haven’t talked to him personally, but I’d guess this series is as much for him as anyone watching. I’m the kind of person to bury myself in projects when times are difficult so I might be projecting a little bit.
https://www.youtube.com/@cyborg555
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I’ve never heard of this guy before, but I’m going to check him out. As far as aging goes, I’m much younger than you @robin-c (I’m in my mid-thirties), but I’m starting to question: Is this aging or SMA progression? I’m not as energetic as I used to be. I have more aches and pains. I’m sure SMA plays a role, but my non-disabled friends are in similar boats. We all like to commiserate together lol.
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Alyssa, I have met Chris (on Facebook) and he’s remarkable.
I’m happy to hear that you can chat with your friends about aging. I used to think old people in my family were boring because they “always” talked about their aches and pains, but I’m just like them now. 😜 My siblings and I start our phone conversations with the weather, (like my friends) but we usually end with a list of our upcoming doctors’ appointments. That brings us closer, though.
And l am very grateful for a Forum like this, too! 🫂
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I’m just like them now, too. 😆 My 90-year-old grandmother tells me all about her aches and pains, and I’m just like, “Yes, girl, same!”
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What!? I had no idea this happened. Oh man, what a blow.
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I had no idea either. I am so sad about this. She seems like a pretty healthy person. May we ask what happened? Was she sick?
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I know, we’re devastated. She was sick, unfortunately. We made a video in her memory if you would like to see it. DeAnn will be greatly missed around here. 💛
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