Lupa F

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]

I just got back from my Spinraza injection. It went fine. They didn’t require a test, they just asked if I tested positive in the past 2 weeks.

I guess they’re just dealing with it there if anybody is positive. They have 2 waiting rooms to wait in before being brought back for the procedure. As I started heading toward the one I usually go to,…[Read more]

Glad you were negative. I think if any of us got it, we’d definitely know.

I’m supposed to go for my next dose on Tuesday and I’m worried once I get there they’re going to tell me I needed to be tested before they can do it. I asked 2 different people and they didn’t say I needed to so I really hope not.

I’ve never noticed any particular change from a specific dose, but I have noticed general changes over time. I’m getting my 10th dose next week, and while I’ve gotten back a little strength, my grip strength is definitely better, though even with that I’m not where I was maybe 5 years ago, the most noticeable change is my recovery time. Before…[Read more]

I thought it was interesting Michael said he’s still experiencing muscle loss with Spinraza. I think I started about the same time as him and I haven’t been, but I have 3 copies of SMN2 which he may not.

As for Risdiplam and Spinraza, I have seen usually a quick statement in the press releases that says something like “patients on other…[Read more]

These are scooter stories rather than wheelchair, but same idea I think.

I had a pickup truck in college with a lift to pick up the scooter and put it in the bed of the truck. The lift needed a plate put on the seat post that was bolted on. That scooter had exposed cables for the batteries. Somehow while I was in the main computer lab at college,…[Read more]

Does leaving Boston at 11pm and driving 4 hours to NYC to go to a dance club then not leaving the club till noon and driving back to Boston count? That might be more dumb than adventurous :).

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.