Lupa F

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.

If you want to wear a mask to protect yourself, get one designed for that, one with filters, not the generic hospital or cloth masks which are more for protecting others if you’re sick. The guidance for masks has always been about protecting others from you, not you from others. But for those who absolutely know we’re not infected that guidance…[Read more]

Is it a permobil? The chair’s manual has a whole section on bluetooth and what it can do and how to set it up.

Kevin, you probably use a different catheter system than I do, but I started putting a little medical tape around the tube connections and that stopped those bits from coming apart when I move around too much.

I had a biopsy in about 1990 that came back inconclusive. I was just diagnosed with general muscular dystrophy or limb-girdle MD, but I never quite fit the symptoms. I went to a new doctor when I moved to Boston in 2000 and he was like “I think you have something else we can do a simple blood test for” and he did the DNA test that showed I had…[Read more]

The once a day thing for Evrysdi seems to be to make you not take too much as that’s when some of the bad side effects started happening, it’s not really because it starts wearing off that soon.

I’m going for my next one on Thursday and I’ve definitely been a bit off the last few weeks. But I also got a new mattress about a month ago and I’m not quite used to it so I think I’m moving around more while trying to sleep so not resting quite as well as I should. But even this “off” state is better than where I was before I started Spinraza.

I’m skeptical of any muscle targeted treatments having any lasting effects because SMA is not a muscle disease, it’s a neurological disease. If it were a muscle disease there are things already available that help build muscle like steroids that should help, but they don’t.

If they find a way to help regenerate motor neurons that would certainly…[Read more]

I just got a letter saying I’m approved for next year and I haven’t seen my doctors in a while. I saw my main neurologist in November of last year and the MDA clinic PA in January of this year. I was surprised because I had been getting my approvals from December to December, but this one is for October to October next year. The approval goes…[Read more]

There have been 2 other myostatin inhibitor drug trials (for Duchene MD) that were both discontinued once trial data was available because they ended up not being effective.

I understand what the drug is aiming to do. That’s not my issue. You title your video “Unbelievable results so far…”. What results are you talking about? There are no results in the article you’re reading from.

I wouldn’t read much into the FDA adding it to the Rare Pediatric Disease Designation. It’s an incentive program to encourage companies to develop drugs for pediatric rare diseases, it doesn’t give any indication about how the FDA feels about a particular drug. A company just has to apply for it and if the drug meets the criteria it gets it. The…[Read more]

Why is the video titled “Unbelievable Results So Far…” when there’s been no data released from the trial yet?