Lupa F

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?

Spinraza wasn’t listed for most insurance companies either for several months even though they had started covering it, so I wouldn’t read much into that.

You’re almost certainly going to hit some sort of out-of-pocket maximum and the rules with that will kick in. You won’t ever come close to paying $340,000, but you might end up paying a decent amount. I pay about $3500 a year for Spinraza since that’s my maximum and I hit that instantly from the first one I do each year.

I think it’d be amazing if Evrydsi made me infertile but otherwise still functional. I know it’s not a nice opinion, but I think it’s pretty irresponsible for people with SMA to have biological children (not that they can’t be parents). We know how SMA is usually passed on and knowingly possibly giving SMA to another person, especially your own…[Read more]

Alyssa, I’m sure if you looked at the list of side effects for a lumbar puncture or Spinraza there would be a huge list of stuff too. They have to list any side effects anybody had, even if almost nobody gets them. That’s why the commercials for drugs are 2 seconds of describing it, then 28 seconds listing side effects.

One thing I thought of was…[Read more]

I didn’t see it listed anywhere on this site, but the price is $340,000 a year for adults. These prices are such a joke. It’s actually cheaper for babies than adults which is the exact opposite of how it should be priced. Spinraza’s justification for its price was that it offset the hospital costs of babies with type 1/2 that require a lot of…[Read more]

Risdiplam was already awkward so they must have held a contest to see if they could make an even worse name and Evrysdi won. That’s the only thought I have for now. I just did my latest Spinraza dose a month ago so I have time before I really need to think about switching.

The front felt weird to me since I was switching from using scooters for the past 20 years to a chair and the scooters are like extreme versions of rear wheel chairs where you’re as far back as possible and all the clearance required is at the front. The front wheel chairs are almost the exact opposite so I was smacking everything with the back…[Read more]

I’m curious what kind of features the Rival doesn’t allow. I thought the Quantum bases were interchangeable with the seating options and the seating systems are where all the real options are. I’d prefer a rear wheel base, but we had decided on a permobil for my first chair so I could only choose mid or front. Front felt super weird, so I went…[Read more]

Yeah, I actually had a tech out yesterday for something unrelated and asked him about it and he said the same thing and even tightened it a bit. It didn’t seem to change much so it wasn’t really what I was hoping for.

I did think of another use for it besides just a cup holder. It can go in the track that’s on the top of the back of the seat, so I’m going to put some velcro on the cup holder and my kindle and use it to hold up my kindle. And since it’s on the back of the seat and not the base or armrests, I can recline and it’ll go with me.

I got the mealtime device delivered yesterday. The arm that holds the cup is a lot stiffer than I expected so I don’t think it’ll work great as something to block the arm from falling down since it’ll be too hard to reposition regularly. It does seem like a useful enough device regardless so I’m going to keep it. I’ll play around with it for a…[Read more]

I’ve never thought of them as interchangeable because I’ve progressed from essentially being not disabled as a child to fully disabled as an adult, but the disease has always been there. And from the other direction, I was misdiagnosed for about 10 years with just a generic muscular dystrophy diagnosis, so I didn’t have a specific disease to refer…[Read more]

So I found this: https://www.mealtimepartners.com/products/drinking_products/front-mounted/front-mounted_for_slide-track.htm

It’s a bit expensive, but it could work depending on how easily the arm bends and how it’s mounted. Like bend the arm so it’s a little behind the seat while the armrest is up to give a little more resistance. Even if it…[Read more]