Lupa F

Was there some reason my previous response to this was deleted? That’s some pretty shady moderation.

The correlation is definitely not 100%, for instance I have 3 copies and am a definite type 3 and many of the type 2s here also have 3. In that terrible IQ study that was posted here a bit ago, there was a type 1 that I think had 6 copies.

But the amount of copies does make a clear difference in some respects: During the early Spinraza trials…[Read more]

There’s the famous Craig T. Nelson (the actor from Coach/Parenthood) quote that applies here to how people think of independence differently: “I’ve been on foodstamps and welfare, did anyone help me out? No.”

I think of independence sort of more along the lines of what defines disability: can I do basic life functions without someone else’s help,…[Read more]

I’ve mentioned it before, but as a type 3, I’ve never had to deal with many of the issues that type 2s do and it took me a while to figure out that’s why I’d get weird questions from doctors. I’ve had to push back against some doctors wanting to do tests and things on me that were completely unnecessary. I had a new doctor a few years ago wanting…[Read more]

There have been a few people who’ve competed in both the Paralympics and Olympics. Of course the most famous one is also a murderer so that’s not great.

But Olympians aren’t like most people anyway so I’m not sure why you’d expect any sort of equal representation.

I actually have a big tub of it that’s been sitting on my counter for years now. I didn’t stick with it long enough to see it did anything though because I don’t like making the shakes. Looking it up now I see there are pill versions so maybe I can try that because I tend to be a lot better taking those.

The other thing I tried a long time ago…[Read more]

“Without SMA, I would not have learned how to sit entirely still and look at a single painting in a gallery for half an hour. I would not understand how interdependent humans are and how much value dependence and community bring to my life. I would not have the empathy that I do for other marginalized groups – for people of color (who are also t…[Read more]

The idea that something would be lost by eradicating a disease seems a bit strange. Do people who have had covid look sadly at those that haven’t had it yet and wonder how those people cope with not having to live through it?

Are there people that are like: it sucks that polio was eradicated because “living with (polio) helped teach and enforce…[Read more]

I actually like this time of year because nobody expects me to go anywhere so I can plan to learn new things without having to worry about appointments or going out. Of course I end up being lazy and never completing anything, but at least I know that’s my own fault rather than not having time to do it because I had to do other stuff.

I also…[Read more]

Ok and now WTF with the IQ study? They threw out the results of the guy that scored in the 140s but left in the guy that scored in the 60s. Someone with IQ scores in the 60s has something else significant going on with them that’s not SMA.

I searched all over for waterfall armrests for a Permobil chair and couldn’t find any. Do you know who makes the ones you got?

I’m sorry about the armrests. I’ve not used the new chair I got 2 years ago because of the armrests. I was hoping once you got your better ones I could show my rep what to get, but guess that’s not happening. I don’t understand how Permobil doesn’t have normal padded armrests available. Everything else on the chair has 5000 options that almost…[Read more]

I’d temper any excitement as an adult. The trials weren’t too promising for us. Most of the good results came from children under 5. In the 5-21 group, a third had no benefit and only another third had a real positive effect. And it’s possible many of the good results in that group were on the younger end of the range.

The one thing I worry about with the way she talks about Evrysdi is that it seems like she thinks it might be a miracle cure that’ll stop many of her current problems. But Evrysdi and Spinraza don’t work well or at all for a number of patients and I think it’s especially true for people with very severe SMA.

Also, as shown in the Spinraza article…[Read more]

Sigh, I guess the Ezlo thing isn’t great either (they don’t have great software). I should research before typing. There are still other brands, Hubitat seems to be pretty decent, but I’d just suggest searching for hubs that don’t need the internet and read all kinds of different reviews.

Well after writing that, I started looking more at SmartThings and apparently Samsung no longer makes the hub for it. It did find a brand of hub called Ezlo that can run completely offline and has a battery backup, but it is somewhat expensive (>$200). If you’re extremely reliant on home automation that might be a good thing to check out. (Again,…[Read more]