Lupa F

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?

Have you seen the Microsoft accessible controller? https://www.microsoft.com/en-us/p/xbox-adaptive-controller/8nsdbhz1n3d8

You can pretty much connect anything you want to it and program it however you want.

Well supposedly it got fixed today and it’s off to insurance now, so we’ll see how that goes. But that was a two and a half week delay for no good reason.

Update to my attempts to get a chair: So I did all the evaluations, got all the paperwork signed by my doctors, everything seemed set. The wheelchair rep said she just needed a copy of my home eval (checking door widths and everything, my place is fine) and we were set to submit to insurance. I told the rep we did that eval the other day and she…[Read more]

Closest I came to one was maybe for my 3rd or 4th dose when at the hospital they gave me a pillow for my head while I was laying down waiting to be allowed to go home. After a couple of minutes I could feel a headache coming on, but I took the pillow away and it mostly went away too so now I don’t let them give me a pillow.

I do feel sort of…[Read more]

The main nerves that get affected by SMA are there from birth so that’s one reason it possibly works well no matter what size you are. I wouldn’t mind trying a higher dose though to see if that feeling that it’s sort of wearing off as the next dose is coming up might go away even if it doesn’t do anything better the rest of the time.

But I really…[Read more]

Apart the from the fact that he defrauded the government, it’s a nice story.

Medicare does cover it, I was told they cover anything approved by the FDA. But if all you have is Medicare, be aware they only cover 80% of the cost (it’s covered under part B, not D) and you’re supposed to be responsible for the remainder. My hospital actually bills like $560,000 per dose which is then “negotiated” down so they only pay…[Read more]

What were the reasons you all were getting denied? I can’t believe there would be actual medical reasons they’d be denying you.

And I don’t know how many of you are old enough to remember the commercials for “The Scooter Store”? They’re the ones that caused these things to be so hard to get. They scammed millions of dollars by getting scooters…[Read more]

Thanks.

I’m trying to get a permobil M3. I’ve been using regular mobility scooters from Pride up until now (I’ve used like 4 different types), but now that I haven’t walked at all in years the scooter seat has been causing me some problems with more contractures in my knees and some pressure soreness on my butt. I’m always sitting in the same…[Read more]

I guess I should clarify about my Medicare experience. I have a Medicare Advantage plan, so we’re dealing with a regular insurance company, not Medicare directly, that’s where the problems are happening.