ryan-berhar
Forum Replies Created
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I struggle to eat physically, and I also have a small appetite, so it’s not really an issue for me. I don’t eat much by mouth. Most of my nutrition is from a feeding tube. I guess I don’t eat the healthiest food in the world, but I don’t eat enough for it to make much difference. I don’t like that eating is a struggle, but I guess in a way it’s a good thing, as I don’t have to worry about diet
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I’m getting mine soon. Probably in the next week or two.
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Oh absolutely. I hate being anywhere except my chair
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Hang in there friend! God bless.
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Sometimes subtle things can make a significant difference. Like I’ve noticed when I lay on my side, it helps to sort of straighten out my back a little as it takes some of the weight off my shoulder.
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That stage of “ is this a t shirt or winter coat day?” is kind of annoying. Lately I’ve been making sure I have my vest on hand. I can get away with it and not a coat at this point.
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Hope it goes well
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That’s just one of the sucky aspects of living with SMA. Relying on others for everything is the worst. I’m sure your sister understands, though.
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Thank you!
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It’s not quite the same, but I had many different nurses when I was in school. Whether you’re close to them or not so much, it’s an enormous change that’s tough to deal with either way.
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Yeah, rain isn’t a big issue for me, as my hometown doesn’t get much rain. But I was curious anyway.
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The little things are often the most frustrating. Like i know I can’t run up a flight of stairs, but that’s easy to accept. It’s things that I can almost do, but not quite, like reading a book, that are the most frustrating.
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Coincidentally, yesterday, a family member of mine said she’s going to try to make her dog an emotional support animal. I’ve always considered the whole “emotional support” stuff as pretty much nonsense. I’m not sure what the laws are, but it seems like exploiting a loophole. It’s not something I support, but I don’t get too hung up on it either.
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I completely agree! My faith is what sustains me. Life is extremely difficult, but I believe God left me here to finish running this race. When I sort of just want it to end, that is what lifts me up.
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That looks interesting. Thanks
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Yes. I’m more looking for the stuff to plug into it
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I’d definitely suggest trying it out.
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Sorry about that 🙁
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Yeah I can’t really imagine doing the nasal tube, but it works for some.
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Sometimes I can sort of put my head upright and the food goes down. I’ve actually had a feeding tube for most of my life, but I still eat a small amount during the day.
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Yeah, I’m more cautious now. I don’t really see any reason to be evaluated. I mean, I know what the problem is. I’ve never been able to swallow well.
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Me too. I’ve thought that for a long time.
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Hey Andres, welcome! I’m Ryan, one of the forum moderators. Please let me know if you have any questions. Thanks for joining us!
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There are tradeoffs with each season.
