Lupa F

I know Spinraza works for me, so it would absolutely suck if I had to stop treatment. But reading the paper it’s absolutely clear that Biogen was full of shit when they claimed the price was necessary because of the cost savings it would provide the healthcare system. Patients that aren’t on Spinraza don’t reach $375,ooo a year in medical costs so…[Read more]

In the full paper they also tracked how many stopped Spinraza altogether and most of the non-adherent patients fell into this group. Very few who were non-adherent continued treatment so that wouldn’t change the numbers much.

Yep it does. It looks like that’s a feature that’s built into Android 12 (new OS version they just released about a month ago).

Not sure what smart lights you’re using, but for some you can buy switches that you can stick to the wall. They’re like little remotes. Here’s the Hue version: https://www.philips-hue.com/en-us/p/hue-dimmer-switch–latest-model-/046677562779

Of course that’s more expense, but if it saves a little hassle for everybody it might be a good…[Read more]

I looked through the manual and you have to do it with the programmer which means you need a dongle or keycode. The manual says which you need is set by the factory, but I’m guessing it’s the dongle.

This is one of those things hopefully “right to repair” laws will fix. There’s no reason we should be locked out of settings like this. There are a…[Read more]

Ah okay.

A somewhat related video I’d be curious to see is if you can tear a couple of sheets of toilet paper off the roll without yanking half the roll off. Like if you were out somewhere and needed a tissue, but that was your only option. I’ve pulled about 20 sheets out too many times at public bathrooms when the toilet paper is in a funny spot…[Read more]

I’m not familiar with all the angles the arm can move at, but for the 2nd box could you instead come at it more from the front rather than the top and use one of the fingers to drag the top tissue out the front and then catch it with the other fingers? Not sure if I can describe what I’m picturing that well, but the top finger that’s getting the…[Read more]

I have a pixel 3a xl from a few years ago that has all the current software updates. I haven’t enabled any specific accessibility features, but if you want me to check if it can do something I can. I did download a Voice Access app, but haven’t needed it since the regular assistant has worked well enough for what I’ve needed.

That’s one thing that’ll blur the lines between types even more. Children that are getting treatments are reaching milestones they never would have and the typical type 1 or 2 progression doesn’t exist for them any more.

I’m pretty close to a textbook type 3. I only started having very slight symptoms when I was about 6 or 7 and I walked unassisted until I went to college at 18. I haven’t had any real issues as an adult with insurance because of being type 3. I’ve just had the usual stuff where they tried to deny Spinraza because of age and my wheelchair because…[Read more]

One thing to remember: airports and airlines aren’t the same thing. Airports are usually owned and run by the local governments, airlines are private companies trying to squeeze every bit of profit out of everything and that’s where the problems we have lie.

This isn’t work related, but I always get comments when people come over to my place saying how messy it is because I tend to not put anything away in drawers or closets. I have all my clothes sitting out on my couch and all my papers on my desk. Putting stuff away means a lot more effort on my part if I need to get anything so it’s just not worth…[Read more]

I get nerve pain about 3 or 4 days after every injection, like my legs start hurting a lot and I could barely sleep. I used to let it go away on its own and that would take weeks, but now as soon as I feel it starting I take some tylenol for a day or so and it goes away completely. It’s surprising how well it works to fix that, like I take maybe…[Read more]

How do you do your taxes? I do mine online and they save all my returns for the last 5 years there.

Also, do you mean SSDI or SSI? They have different income requirements, with SSDI allowing higher outside income. This is what I could find for the current numbers: “To qualify for SSDI, you must earn less than $1,170 per month. To qualify for SSI,…[Read more]

I’m sorry, but “SMA Pride” is ridiculous. It makes it sound like you’re celebrating a disease that kills hundreds to thousands of children a year and severely disables many more. Reading recent articles there seems to be some trend to try to normalize SMA as a benefit (“it makes me unique!”) while ignoring all the people it has killed and families…[Read more]

A little note, I think there’s a typo in the quote at the end? ““I see disabled people every day thinking of ideas disabled people never would have”.

Luckily(?), I’m not much of a family person so I don’t mind missing stuff, but I’ve told my family “if I show up I show up” but to never count on me being at an event because I’ve had enough times where something or other broke and there was no easy way for me to get somewhere.

As far as vans go, I just got a new one 2 years ago and the thing…[Read more]

Mike, I got the device you linked. At least for me it was pointless because you still have to get the sock around the plastic which is bigger than my foot and I couldn’t even come close to getting it on that thing. I tried another device too which had the same issue: if I can’t get it over my foot how am I supposed to get it over something bigger…[Read more]

Would you have to redo the loading doses for Spinraza since you’ve been off it a while? That might make the decision for you.