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  • I’m reading the Mike Nichols biography. You can live vicariously through me while I live vicariously through him. It’s a good book, but almost tiring how many famous people he was always around.

  • And then it’s even more frustrating when someone finally does come to help and I try to explain what I want done. I’ll tell them “just tighten that screw right there”, and they’ll look at me and then go outside and take a tire off my van. And I’m like wtf that wasn’t even close to what I said to do.

  • I run into the issue with family where I get told: “Call me if you need anything!” I ask them for help with something. “I’m working, can I come some other day?” I say okay and never hear from them again. The thing I wanted help with breaks and I need it fixed immediately so I ask again. “Why didn’t you ask for help earlier?” Sighhhhhhhhhhh.

    I…[Read more]

  • DeAnn, did you ever get new armrests? I stopped even trying to use my new chair because the ones I have are so uncomfortable.

  • I’m going to my doctor in a couple weeks and will probably discuss Evrysdi. I’ve been on Spinraza for about 3 years and it still works pretty well, but I feel like the end of cycle slump is getting worse.

    I know some here have been on Evrysdi for a little while now and any thoughts on how it’s going (especially if you switched from Spinraza)?


  • Unless you take it regularly for something else, it’s not recommended to take Tylenol or aspirin before the shot.

  • Power adjustable footrest height is definitely available. I really wish I got it when I got my chair. I was told I can add it still if I want, but it’s not something insurance will cover for me. It also requires a different footplate (a single plate rather than split) which wouldn’t be as wide as the ones I have now so that might be worse.

  • Lupa F replied to the topic Injection site question in the forum Spinraza 1 month, 2 weeks ago

    I think Kevin here has his injections done in his neck since the usual lumbar area wasn’t possible. But I don’t know that changing injection sites would do much. How did they show the Spinraza was concentrated at your injection site? I’ve never had any tests that would show something like that. But if it did affect different muscles depending on…[Read more]

  • Be careful with fiber. A few years ago I tried taking some since I was having some issues in the bathroom. Over the next couple weeks I started feeling very woozy and lightheaded, especially while on the toilet. I felt like I was falling all the time. I then realized it started just after I started taking the fiber. Once I stopped, the weird head…[Read more]

  • I have a folding power side ramp. Even if the electronics break, you can still manually use it. The only issue with the folding ramps is they bounce around a fair bit and are pretty noisy inside. I think you can manually use an in floor ramp but it’s a bit more involved where you have to crank it out.

    As for the side versus rear ramps, I’d try to…[Read more]

  • As someone who has only had to use a chair as I got older, I don’t have a problem with his story or feel it’s inauthentic. A wheelchair to me is a tool, it’s not part of my identity. I’d love to never have to use one again. I’ve said it before here, that I don’t think being disabled makes me who I am, it’s just something I have to deal with, and…[Read more]

  • This is probably above any of our pay grades to talk about, but some of the more recent COVID vaccine candidates are using adenoviruses as their vector to deliver the stuff to create an immune response. Zolgensma also uses an adenovirus to deliver the gene therapy. I believe the specific ones are different, AAV9 for Zolgensma and I know the…[Read more]

  • I’ve think I’ve seen those, Kelly, but it’s not the top cushion where my elbows and wrists would be that bothers me. It’s the thin, hard plastic base which digs into my ribs when I lean to the side, so much so that I get bruises if I’m not careful. But of course being careful makes it harder to do whatever it is I was leaning to the side for in…[Read more]

  • What kind of arm pads are you getting? I hate the ones mine came with (the plastic digs into my sides if I have to lean to the side) and my rep never came back after his initial visit so I never got them fixed and I can’t find any good ones online that I know would work.

  • I don’t keep mine in my room (I have an M3), but I have seen that green flashing LED underneath the chair when I’ve finished charging it. But since I’m not usually in the same room with it I haven’t seen it beyond that. I searched through the manual and couldn’t find any obvious reference to it.

    There really shouldn’t be anything flashing or…[Read more]

  • If she’s 96 there’s absolutely no reason she shouldn’t have been in the first batch. The guidance was healthcare workers and anybody over 75.

    But the reason they’re doing prisoners is they’ve been huge sources of outbreaks because everybody is crammed in there. And that gets people who work there or are going to be released infected who then…[Read more]

  • I’ve gotten the “date another disabled person” thing too, but I think that’s kind of offensive. It’s pretty much saying to stick with your own kind. I never really considered it a viable option anyway. I need things set up in a very specific way and I’m sure another disabled person wants things their specific way and trying to combine them would…[Read more]

  • I’m trying a new hobby, hopefully one I’ll keep doing for more than 2 minutes like every other one I’ve tried. Pretty much all the clothes I own and like are no longer being made, so I’m going to try to learn how to sew. I still have my old clothes so I think I can use those as a pattern to make new versions, and maybe actually make stuff that…[Read more]

  • I’m not in any hurry to get it. I can isolate myself really well compared to other people so I’d rather people who really need it get it first since it’ll be limited in who can get it for a while. And after watching trials for so many SMA and other disease treatments that have issues only come up during phase 3 testing after a year or two (these…[Read more]

  • Hey Alyssa, hadn’t seen you had asked about the side effects. It was during the monkey trials of Evrysdi that when given too much they started having damage to their eyes and some other issues. At the recommended doses those things didn’t occur.

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