Lupa F

I know insurance would never pay for it, but I wish I could use both for a bit to see what would happen. They’re already trying higher doses of Spinraza and this would sort of be the same thing.

I’m confused what you’re worried about. Are you worried if she’s infected, her touching her face will get you infected? Or are you trying to train her to not touch her face so much so she won’t get infected elsewhere?

The no face touching thing is to make it so you don’t get infected, not to stop them from infecting you. If they’re infected,…[Read more]

I don’t know that I could say whether it gave me anything emotionally that I might not have otherwise had. I’d like to think I’d be as patient or understanding regardless of disability.

I have had several “perks” from being disabled though.

In high school, my last 2 years I was allowed to leave classes 5 minutes early so I could walk to my next…[Read more]

Biggest thing for me would be if medical equipment that you could was based on what would make things easiest and not just whatever insurance thinks you could scrape by on. Every scooter or chair I’ve gotten has had a seat elevator because without it I couldn’t transfer on my own, yet somehow that’s not medically necessary according to insurance…[Read more]

I applied for this and they approved it and just sent an e-mail link to the gift card (I did Amazon). I didn’t have to pick it up in the mail or anything if anybody is worried about needing to go out to get it.

Like you guys, this is mostly an extension of my usual winter routine, so it’s not much of a change for me (it’s still even snowed here like 3 times this week). The only thing I’m really doing differently is getting groceries delivered every two weeks rather than having restaurant delivery every couple days. And that’s less out of concern for…[Read more]

It does seem strange they’re doing this when Spinraza was given an expanded label despite having no trials for older patients at all. It might’ve been better if Roche actually gave them less data in this instance (though obviously that’s a bit less ethical).

For perishables, I hope nobody is putting lysol on fruits and vegetables. They’re porous so anything like that seeps into them (which is why you never wash them with soap either).

Luckily I had my last dose on March 4, about a week before everything started shutting down, so I don’t have to go again until early July. Even if things aren’t much better by then, as long as they’re still doing them, I’ll go again. I’m much more worried about going back to how I was before I started Spinraza than I am of Covid. I have my…[Read more]

I had used Samsungs up through the Galaxy 8. I really disliked the rounded edges the 8 had. I actually like having the bezel (I think Samsung has put them back on newer stuff). Since I really don’t use a ton of features on my phone I went with a cheaper option. I got the Pixel 3a XL. It’s one of the few times I’ve ever really liked changing to a…[Read more]

I’m not a fan of automatic towing rules. They’re abused way too much just to generate revenue for the towing companies and cities. I’ve forgotten to put up my placard a few times and having my van towed would be a way bigger inconvenience than waiting for someone to move or getting someone to move my van a few feet to get access to my ramp.

It says at the bottom: “The report is expected by October 2021.” So it’ll be a while before anything comes from this.

The tech thing has nothing to do with the wheelchair maker. I’ve had the same issues with my scooters which are nowhere near as complicated as the wheelchairs. One reason I’ve liked using scooters is they’re cheap enough that I’ve been able to buy backups myself so if my one that is covered by insurance breaks down I always have a backup.

Even…[Read more]

Posting about it made me decide to actually try to do something about myself so I emailed Permobil this morning. They got right back to me which was nice. They said it left them with the seat height set the right way, so he asked me to try playing with the footplate height. The seat actually can go as low as I want, but the footplates are set too…[Read more]

Figure I’ll tack on my wheelchair story here too. I wrote a post a while ago about getting my chair approved, it finally did in late October and they delivered the chair, a permobil M3, the day before Thanksgiving. I could already tell something was off when he brought it in. I requested the seat to be as low as possible because I live by myself…[Read more]

A doctor has to submit the patient for the program. If the child is thriving under some other treatment, their doctor shouldn’t submit them for this program.

Hey Kevin,

Thanks, I just want people to have accurate information since it might affect people’s decisions on treatments. I checked and they did update it, but it’s still wrong. It now says: “Sprinraza works much the same way, and is given as an intrathecal injection into the spinal cord. Treatment is once every four months after an initial…[Read more]

I highly doubt that you’ll be required to take it at the doctor’s office since it’s supposed to be taken daily. I’m sure your doctor likes you, but don’t think they want to see you 365 days a year.

Just want to note since I can’t find a good place to contact someone about it, the new article about Risdiplam has a major error about Spinraza: ”

“Spinraza works much the same way, and is given as an intrathecal injection into the spinal cord. Treatment is once a month after an initial loading dose.”

They even link to the Spinraza…[Read more]

I found this: https://sensel.com/products/the-sensel-morph?variant=12197272944719

That kind of the idea?