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DeAnn R started the topic Cure SMA Conference 2022 in the forum Raising Awareness of SMA 22 hours, 35 minutes ago
Did you make it to the Cure SMA conference this year? Travel isn’t my forte, but Kevin is a more adventurous soul. He and his parents made the trek cross country to attend. It sounds like his trip started out a bit rocky. In true SMA fashion though he made it work. You can read about his adventure here.
If you attended, I’d love to hear abo…[Read more] -
DeAnn R replied to the topic It's here… in the forum Coronavirus (COVID-19) and SMA 3 days, 22 hours ago
Sorry to hear that. Sounds like you’re doing everything right. Fingers crossed if you get it it’ll be mild like mine was. Just keep on top of any breathing treatments. You can ask your doctor about Paxlovid or monoclonal antibody treatments if you do come down with it. I don’t have experience with either but know that seems to be an early…[Read more]
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DeAnn R started the topic Wheelchair Update in the forum Adults With SMA 3 days, 22 hours ago
A year and a half in and I’m still tweaking my “new” chair. Finally, I think I have it good enough. Are there still aspects I’m not crazy about? Absolutely. Next go round I don’t think I’ll be sticking with the fwd, but not much I can do about that misstep now. Finally, I got the joystick mount I wanted and a waterfall armrest! They do exi…[Read more]
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DeAnn R replied to the topic How Have Iron Infusions Been for You? in the forum Adults With SMA 6 days, 22 hours ago
My iron levels have been low, although I’ve never had an infusion. I’m supposed to take a supplement, but am not very consistent. Have you heard of Iron Fish? Apparently you boil it in water to infuse your water with iron. I’ve thought about trying it since I do water flushes with my feeding tube. Not sure if I want to hassle with it or not.…[Read more]
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DeAnn R replied to the topic Spontaneous Gardening With The Jaco in the forum The SMA News Today YouTube Channel 1 week, 1 day ago
Great question. Surprisingly it doesn’t drop as drastically as I anticipated, but it is noticeable. On days when I use it a lot I drop bars quicker than if I don’t.
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DeAnn R replied to the topic 👋 Hello 😊 in the forum SMA Forums Welcome Lounge 1 week, 4 days ago
If it’s over 40 years misery must love company, lol! Genealogy is always interesting. There used to be a couple good shows based on ancestry too. I think one was called “Who Do You Think You Are?” The other was only on for a season but this gal would use genealogy to solve crimes. I don’t remember the name of it. She was pretty good at…[Read more]
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DeAnn R replied to the topic Do you take nebulizer treatments daily? in the forum Adults With SMA 1 week, 4 days ago
Like you I only use nebs when I’m under the weather. I can see where regular use could be beneficial though. If I don’t see an actual benefit it’s hard for me to stick with it. Sometimes I forget maintenance is important to.
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DeAnn R replied to the topic Treatment Updates in the forum SMA Treatments: Questions, Stories, etc. 1 week, 6 days ago
Again, I haven’t really noticed any significant changes. That bodes for swallowing as well. My neurologist suggested a swallow study to see, but I don’t feel like I would pass anyway so I’d rather not hassle with it.
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DeAnn R started the topic Spontaneous Gardening With The Jaco in the forum The SMA News Today YouTube Channel 2 weeks, 3 days ago
Hey guys! Spontaneity is something I envy most of the time. One thing the JACO Robotic Arm allows me to do is be more spontaneous. In this video I show you how my spur of the moment decision to plant peas worked out. Although it was more difficult than I anticipated, it was successful. You can hear in the vi…[Read more]
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DeAnn R replied to the topic Treatment Updates in the forum SMA Treatments: Questions, Stories, etc. 2 weeks, 5 days ago
I’ve been on Evrysdi for about a year and a half after switching from Spinraza. Personally I felt better on Spinraza but the difference isn’t enough to warrant switching back. I haven’t really noticed any significant gains in any areas. No significant losses either, so that’s a win in my book. My GI issues are being managed with Imodium. That…[Read more]
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DeAnn R replied to the topic 👋 Hello 😊 in the forum SMA Forums Welcome Lounge 3 weeks ago
Hey Robin! Nice to have you here. I remember chatting with you through some of those online get togethers. We have an awesome community. Feel free to chime in anytime. Maybe us old timers can teach the young pups a thing or two. Or, as you alluded to, learn from them.
What other hobbies keep you busy? Sounds like you like to be on the go.
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DeAnn R replied to the topic Thinking About Mortality in the forum Adults With SMA 3 weeks, 4 days ago
Gosh, this is certainly a heavy topic. Honestly I never expected to outlive my parents. When Dad passed away it was a real shock. Sometimes I joke with Mom it’s a crap shoot who will outlive who between us. It does make some aspects of future estate planning difficult though.
It is tough losing friends. I was just thinking how I’ve misse…[Read more]
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Adnan and
DeAnn R are now friends 3 weeks, 5 days ago
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Crystal and
DeAnn R are now friends 3 weeks, 5 days ago
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DeAnn R replied to the topic Traveling with Formula/NJ Tubes in the forum SMA Assistive Technology/Equipment 3 weeks, 6 days ago
That’s why I love this group. Such awesome ideas!
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DeAnn R replied to the topic How Do You Manage "Disability Dilemmas" in the forum The SMA News Today YouTube Channel 3 weeks, 6 days ago
Ha, I almost bought a top that said, “Homebody,” except they were sold out in my size. That tells me we’re not alone in that sentiment. I like your reasoning. Family and loved ones are important. I always hope if it’s an event like that I forgo they’ll have an added understanding of my situation.
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DeAnn R replied to the topic How Do You Manage "Disability Dilemmas" in the forum The SMA News Today YouTube Channel 3 weeks, 6 days ago
Thanks Kip! It’s tough when there’s so many things I want to do. I’m trying to be okay where I’m at. Like you said though, we have to remember how we got where we are today. For me that means forgoing the concert, but not being afraid to push the limits the next time an opportunity presents itself.
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DeAnn R started the topic How Do You Manage "Disability Dilemmas" in the forum The SMA News Today YouTube Channel 1 month ago
Hey guys! I’m guessing a lot of you can relate to my latest video. Recently I had the opportunity to do something that sounded like a ton of fun. After thinking about it I decided against it. In the video I discuss what factored into that decision. I call situations like this “disability dilemmas”. What goes…[Read more]
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DeAnn R replied to the topic Support Systems in the forum Adults With SMA 1 month ago
Love the idea of a live-in caregiver. For the two reasons you mention though, space and patience, I don’t think it’s right for me at this time. I’m always waiting for my pa’s to come, but I can’t wait for them to leave.
Lately I’ve been thinking about how to restructure my care plan to draw in more candidates. No luck so far.
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DeAnn R replied to the topic Support Systems in the forum Adults With SMA 1 month ago
Yes, keep on keeping on despite the hardships. Thanks for your input Pamela.
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