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DeAnn R started the topic Do you give unsolicited advice for disability issues? in the forum Adults With SMA 3 days, 2 hours ago
My niece recently broke her wrist while snowboarding. Having broken my elbow myself several years prior (not snowboarding) I could give her all kinds of advice. Instead, I sent her a stuffed version of the Minnesota Wild mascot with a note saying that she better leave the stunts to Nordy.
A few weeks into her healing my sister asked if I…[Read more]
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DeAnn R replied to the topic A quick question? in the forum Adults With SMA 4 days, 20 hours ago
Hey Crystal! It is wonderful to hear from you. Unfortunately it isn’t advised to post personal information through the forums. I’m not sure if you’re on Facebook or not but I know a lot of folks exchange info in the Living with MD group. Maybe check that out. Hugs! Glad to know you’re here.
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DeAnn R replied to the topic Do contractures bother you? in the forum Adults With SMA 6 days, 22 hours ago
Technically I don’t think bean bags to straighten knees is a thing, but apparently it was the go to heavy object I guess. Push through the pain must also be a popular motto. Sorry to hear PT was so miserable. Glad it got better as time went on. Hopefully therapists are learning how to better work with patients like us. Do you do PT as an…[Read more]
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DeAnn R replied to the topic Do contractures bother you? in the forum Adults With SMA 6 days, 22 hours ago
Other than the typical stretching we didn’t do much. I wore orthotics on my feet and a brace for my back but neither did much good. Do you wear any braces?
Dodged a bullet with the Botox for sure. It doesn’t seem to be common knowledge that it’s contraindicated for those of us with neuromuscular diseases.
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DeAnn R replied to the topic Do contractures bother you? in the forum Adults With SMA 6 days, 22 hours ago
Good to hear from you Crystal! Sorry to hear your contractures are painful. Do you do anything that brings relief? I’ve heard surgery can be a difficult recovery and doesn’t have a high success rate. In theory it seems like such a good option.
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DeAnn R started the topic Do contractures bother you? in the forum Adults With SMA 1 week, 3 days ago
Lately I’ve seen social media posts on preventing and correcting knee & hip contractures. Although I understand the logic, as an adult I don’t really have problems with mine. Yes, I’m permanently bent, but it doesn’t cause me pain or issues with dressing. Once they tried to blame a surgical slip-up on them, but I feel it was more an issue with an…[Read more]
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DeAnn R replied to the topic Welcome Our New January Members! in the forum SMA Forums Welcome Lounge 1 week, 4 days ago
Welcome Selouna! Sounds like you keep busy too. It’s always great to have perspectives from around the world. How are disability services in South Africa? More importantly, depending on who you ask, how’s the weather? I’m suspecting I might be a bit jealous with your answer there.
You make me want to resurrect my old recorder. Once upon a…[Read more]
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DeAnn R replied to the topic Do you have a hard time adjusting to new equipment? in the forum SMA Assistive Technology/Equipment 1 week, 5 days ago
I finally figured out I can use the hip abductor as an armrest to prop my left arm in the correct position to aid my right arm so I can reach my mouth. Up to that point it was so frustrating because I could do it in my old chair no problem. It’s a Permobil F3. I call it the gutless wonder.
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DeAnn R replied to the topic What Keeps You Busy? in the forum Adults With SMA 1 week, 5 days ago
Haven’t seen Outer Banks. Was it good? I think you’d like Bridgerton. For the wardrobe for sure if not for the scandalous affairs.
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DeAnn R replied to the topic Testing, testing, are you here? in the forum SMA Forums Welcome Lounge 2 weeks, 1 day ago
Roger that! Reminds me of the cb radio days.
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DeAnn R replied to the topic Testing, testing, are you here? in the forum SMA Forums Welcome Lounge 2 weeks, 3 days ago
Oh good! Your message came through as well. Fingers crossed the glitches are gone.
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DeAnn R replied to the topic Testing, testing, are you here? in the forum SMA Forums Welcome Lounge 2 weeks, 3 days ago
Yay! Thanks for responding.
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DeAnn R started the topic Testing, testing, are you here? in the forum SMA Forums Welcome Lounge 2 weeks, 4 days ago
As you may have noticed, we’ve been having some technical difficulties with the forums. As promised our fantastic tech department has been working to get things straightened out. We think we’ve got it. If you’re able to log in and see this post please comment below. If you can see this but you’re still having difficulties posting, you can try…[Read more]
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DeAnn R replied to the topic Do you have a hard time adjusting to new equipment? in the forum SMA Assistive Technology/Equipment 2 weeks, 5 days ago
How many chairs have you had in your lifetime so far? Did you have a favorite? Mine was my Invacare Storm Torque 3. Unfortunately it doesn’t have the features I need anymore. My Quickie was nice but needed repairs way too often. It’s so difficult transitioning to something new. Columnist Brianna Albers once compared it to breaking in a new…[Read more]
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DeAnn R replied to the topic Tap, tap, tap… is this thing on? in the forum Weekly Wins 2 weeks, 6 days ago
We see your post! Sorry you’ve been having issues. Promise our tech department is working on it. Thank you for being patent.
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DeAnn R replied to the topic What Keeps You Busy? in the forum Adults With SMA 3 weeks, 3 days ago
Actually, the zombie aspect takes a back burner I’m finding. I’m a reality TV fan too. What tops your list? Please don’t say The Bachelor. I know it has a following, I’m just not one of them. I’m more of a 90 Days fan. If you like chick flicks I assume you’ve watched Bridgerton. Is season 2 worth watching?
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DeAnn R replied to the topic What does Rare Disease Day mean to you? in the forum Adults With SMA 3 weeks, 3 days ago
I have to admit sometimes I struggle with the concept of Rare Disease Day. For some reason this year it’s especially challenging. Sometimes it feels like I’ve spent so much time and energy trying to bring awareness and yet it seems like life is still a struggle. When I see videos like this it reminds me that I’m not in it alone. Maybe if I…[Read more]
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DeAnn R started the topic Welcome our new February members! in the forum SMA Forums Welcome Lounge 3 weeks, 4 days ago
Wow! Another month has flown by, albeit February was a few days shorter than most months. Alyssa and I would like to welcome new members who joined us in February:
@elianarose
@lindsayrussell
@tiberius
@somebodyIt was so much fun getting to know our new members last month we want to continue that tradition. We’d love for you to i…[Read more]
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DeAnn R started the topic What Keeps You Busy? in the forum Adults With SMA 1 month ago
We just got dumped on with snow here in Minnesota. Now it’s -12! It’s a reminder that spring is still a long way away.
What is everyone keeping busy with these days? What are you watching? Listening to? Are you into gaming?
I’ve been watching 1923 on Paramount+ (if I’m not mistaken.) Mom and I binge it when I go there, so I’m an epi…[Read more]
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DeAnn R replied to the topic Welcome Our New January Members! in the forum SMA Forums Welcome Lounge 1 month ago
Those sound like fun projects. Pondering how you craft a pickle. Do you have a favorite craft medium? Lately I’ve been paper crafting. Mostly cards because they’re small.
Have you had Lola since she was a kitten? I miss my ol’ kitty Tic-Tac. She was 15ish. My aunt rescued her from the streets. Now I have a 2 year old I call Little Kitty…[Read more]
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