• Hi DeAnn, no I didn’t attend the conference. In fact I’ve never attended on in-person. I’ve attended virtually, though, during the pandemic and LOVED getting to meet fellow SMAers.
    In a perfect, I would have traveled to a conference while I was younger, more adventurous, and more ambulatory, but that didn’t happen. Too bad you and I don’t l…[Read more]

  • 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]

  • Thank you so much! I hope so too. I’m glad you hardly experienced symptoms and decided to get vaccinated 🙂

  • I tried beets once and couldn’t stand the taste. Although I’m super picky so that’s probably why I didn’t like it ha. Unfortunately, the supplement wasn’t enough for my levels to improve so we’ll see how these infusions go.

  • Hello there. I read your post and I wanted to share my experience. In late November/early December of 2021 (can’t remember which one), I tested positive for covid after my sister and parents had gotten sick from it. Miraculously, I never got any symptoms whatsoever, except for maybe some sniffles, which could also have been from the cold w…[Read more]

  • My iron levels were also recently found to be low. I’ve been taking a liquid iron supplement by mouth for about a week. It’s not too bad, I was expecting a nasty metal taste but you only get a bit of that in aftertaste. Like someone else said, if you can incorporate spinach into your diet that could also help. Beet and carrot juice is also good

  • Thank you! I just read your post. I’m glad it was just a scare for you. Hopefully it is the same here. Aw thank you, I really needed that. I get anxious very easily and my mind was already spiraling, but you’re right. They have a lot more experience now and can offer some treatment options.

  • Thank you! I’m glad you experienced mild symptoms and felt better. Apparently he was exposed to it since Sunday and the rest of us haven’t shown any symptoms so fingers crossed it remains that way and it’s just him. I’ll definitely stay on top of my breaking treatments

  • Gee, this topic resonates with me…A LOT. I can empathize with everyone here.

    At a “seating modification/consultation” appointment a few weeks ago, the rep was adamant that my cushion was under-inflated. He was likely correct, but he then pumped up the cushion so much that I had hip pain after a few hours sitting on it. Sigh

    He also stron…[Read more]

  • I also have the Permobil F3 and don’t particularly care for it. Like Dennis said, it feels very unstable. When I got my chair I took the seat off my old wheelchair and put it onto this one. The only way I’d get a new wheelchair is if they allowed me to do that because I hate having to readjust and get comfortable with something new. Well, som…[Read more]

  • Also, I’m sure you’re stressed but just remember that doctors know so much more about Covid than they did two years ago! Of course, any infection is dangerous to us but we’re much more equipped to handle this virus than we were at the start of the pandemic. I hope you and your family stay healthy and your brother gets better soon. You’re doing a…[Read more]

  • Confirming what DeAnn said. We had a Covid scare in the house last month and immediately called my doctor. Just stay vigilant and if you start to feel ANY symptoms (no matter how severe), tell your doctor asap. The sooner they catch your symptoms the sooner they can give you something to treat it. I guess treatments for Covid are only effective if…[Read more]

  • I also have the Permobile F3, my second.

    The chair seems ok, but I am still not as comfortable going out in it. The first I was willing to go out, go shopping on my own, go for a nice roll through the woods near me, BUT this chair feels less stable somehow.
    Perhaps I am weaker, maybe the lifting mechanism has changed, but whatever it might be, I…[Read more]

  • 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]

  • 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]

  • Hi everyone, after dodging covid for 2+ yrs it has finally reached my home. My brother tested positive this evening.  We’ve been hanging out a lot now that we’re on summer vacation (watching movies, etc) which makes me worried I’ll be positive. So far my parents and I haven’t shown any symptoms and my brother is isolating in his room. We’re all…[Read more]

  • I guess I could go into anaphylactic shock from the infusion but that’s only temporary. It’s in a hospital setting so I guess I’m in the right place if that we’re to happen. Also, I’m curious if it causes constipation. This isn’t necessarily a risk, but with my whacky GI problems I consider it one. 😂 I think because it’s going directly into…[Read more]

  • Alyssa, thanks. Yes, when I was younger I really looked forward to vacations. Hugs!

  • DeAnn, I have seen your videos so I expect you garden in your downtime. I really can’t seem to keep plants alive, so gardening is not an option. 🤣

    I guess my down time is either watching HGTV programs or socializing online or on the phone. I daydream about redesigning/remodeling our kitchen, lol. Of course I can’t do the physical work, but I wou…[Read more]

  • Amy, thanks. 👋

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