lupa-f
Forum Replies Created
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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 the site, if you switched locations, the gains in your legs might go away as you’d be skipping a dose there. Instead of doing that, the other option would be switching to Evrysdi which obviously isn’t localized at all in the spine since it’s taken orally.
There are also the trials going on now with higher doses of Spinraza. I want to try that myself (assuming they don’t jack up the price for it). The higher dose might mitigate any localization issues if they exist.
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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 feelings went away and I felt normal again. I think it was making my intestines work so much my blood pressure dropped way too much.
I’ve met with a number of dieticians. They’ve all said more or less the same things to me, but I was mostly concerned with weight loss and trying to find food I could make myself. I usually followed their advice for about 2 weeks and then went back to whatever.
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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 go look at them in person. The rear ramps to me seem to use up a lot of the storage space that you might want to have. The side ramps still have the full back bench and rear storage area. The only real advantage the rear ramp vans seem to have is the option to park in regular parking spots and whether that’s important I guess depends on the area you live and how parking is in the area.
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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 has kept me from doing things I want to do. So while it may not represent your version of disability, it does mine.
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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.
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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 showing up on these chairs when the power is off. They’ve got a few things that make it drain the battery when it’s off and I’ve managed to kill my batteries in about a year because of them. I’m fairly disappointed in how poorly thought out some of the design decisions on the chair are considering that permobil was supposed to be one of the best choices.
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I’m trying a new hobby, hopefully one I’ll keep doing for more than 2 minutes unlike 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 fits me properly.
As for lights in your house: have you tried something like Hue lights? I got some a while ago and really like them. I can turn them on and off from my phone or Alexa with my voice. It’s really nice to be able to turn on and off the lights around the house while I’m in bed. But the Hue branded ones are expensive, especially the multicolored ones, The white bulbs aren’t quite as expensive and there are other non-Hue versions that are cheaper too.
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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 vaccines have been in phase 3 trials for a few months only), I’m happy to wait longer to see what happens.
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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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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 doesn’t make much sense.
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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.
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To be too blunt about it, but that’s a terrible idea right now. Maybe with how the numbers were in August you could have gotten away with it, but right now you’d be taking a big risk. You can’t wear masks while eating, and you’ll probably all be using the same bathroom, so social distancing is out. And social distancing doesn’t really work if you’re in the same space for several hours eating and talking toward each other.
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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.
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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 SMA. I have 3 copies of SMN2 as well (and 0 SMN1 obviously). I’m kinda surprised you all have 3 or more copies too since it seems like you’ve had much more severe SMA than I’ve had and I always thought that was a good indicator of severity.
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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.
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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.
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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 be effective, but it doesn’t seem like there’s anything close on that front.
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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 through my neurologist, not the PA, so I had two approvals from that November visit. I didn’t ask them to submit it early or anything. Only thing I can think of why they did it early is my Biogen FAM got reassigned to a new job so she might’ve had them do it ahead of time while she was still involved.
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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.
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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.
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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 program gives the company an incentive to apply for this by shortening the review process for the drug in the application and also gives them another priority review voucher if the first drug gets approved.
From the original press release: “If a biologics license application (BLA) for SRK-015 for the treatment of SMA is approved by the FDA, Scholar Rock may be eligible to receive a priority review voucher, which may be redeemed to obtain priority review for any subsequent marketing application or be sold or transferred.”
I don’t have a problem with the article Michael talks about, but the video title is extremely misleading as there are no meaningful trial results published yet.
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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 the first place. What Deann described hers are going to be like is I think what I want, more rounded edges with some padding.
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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 bring it home and cause more outbreaks. My state lists prisoners in the second set along with many groups of essential and front line workers. The first set was the group I said above.
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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 just make things more difficult for both of us.
I dated someone for a year in college, but that’s been it. I sort of felt like I was settling because it almost felt like she was going to be my only chance and that wasn’t fair to her or me, so I kinda let it fizzle out (I moved away for a job). I’m too picky and don’t want to date around, which means I don’t have many people I even want to try dating. But the few people I’ve been interested since college were in long term relationships when I knew them so those were all non-starters. And now it’s been so long I’m not interested in dating at all. I’m too set in my ways and don’t want to have to deal with another person regularly. I had one person offer to hang out weekly which would’ve been fine, but she ghosted after a couple times. I didn’t mind she disappeared though, she was extremely attractive, but not somebody I really wanted to be with.
I tried a dating site once. I put on it that I use a scooter to get around. I had one woman contact me and told me how much she liked scooters. I told her I meant a scooter like a wheelchair, not like a Vespa: “Oh ok.” And that was the end of that.