lupa-f
Forum Replies Created
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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 tissue would be horizontal and the other two would be below that down near where the rest of the tissues are but with the wrist at like a 45 degree angle so the bottom fingers aren’t pushing into the box.
That’s probably more complicated when the solution is obviously just get the other types of boxes :).
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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.
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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 of paperwork mishaps, but the reason wasn’t because of the type. I know some insurances were trying to limit Spinraza on type/age at first, but since Medicare/Medicaid allowed it for everyone I think almost all of them relented on that.
My mom did have a lot of trouble getting my first scooter covered when I went to college, but I wasn’t involved with that so I don’t know what happened there. I also hadn’t been diagnosed with SMA yet then either, so it couldn’t have been about the type.
I think the types are still pretty useful as long as they’re not considered too rigidly. It seems like most here are type 2s and my experience with SMA is pretty different from them. I’ve never had scoliosis or rods in my spine, I don’t have caregivers, I live on my own and drive my own car. And then mentally it seems like those who’ve had SMA affect them from very early on consider it a part of themselves whereas I consider it something that happened to me, I don’t consider it part of my identity since it wasn’t something that was always there really (I know technically it was, but you know what I mean).
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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.
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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 it. I used to try to clean up when someone said something, but now I’m just like this is my home, you’re not here every day, and this makes my life easier, so it’s not your problem. It’s not like the items care whether they’re out in the open or in a drawer either.
There have also been times when I forget why I have something the way I do until someone asks me why it’s like that. Then I’ll fix it to how they want. Some time later I’ll have to use that thing and since I fixed it the way they wanted it’s much harder to use than the way I had it set up earlier. After enough times like that, I’ve come to just trust myself and ignore them unless it’s really something that doesn’t matter.
It also helped I learned to trust myself pretty early on from dealing with physical therapists. They’d suggest I do things one way, but the way I would do it was 10 times easier so it helped me understand I did sometimes know what was best for me.
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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 2-4 regular strength tylenol total. But I was never worried about the nerve pain I was feeling because I’ve had that same feeling even before I ever started Spinraza and knew it took a while for it to go away. But if this is something new for you, definitely check with your doctor. You shouldn’t have pain this long afterwards.
(Trying to find regular strength tylenol is kind of funny. I found one box out of about 50 different types of extra strength tylenol. At that point shouldn’t you just relabel extra strength as regular tylenol?)
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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, you must earn less than $735 per month.” But it’s only income from “gainful activity” that generally counts (things like insurance payments or interest usually don’t count).
I haven’t heard from the SSA in a long time, but I also haven’t tried to work so haven’t had any other real income. I got a form a few years after starting SSDI, but that was at least 10 years ago now. I’m actually surprised I’ve never gotten anything else from them. I have to fill out forms every year for my old employer.
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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 it has devastated.
I have no problem with including SMA as a part of a greater awareness of disability issues, but singling it out as if it were a good thing is crazy.
I’d hope we’d all like to see SMA gone some day which makes it completely unlike what other Pride celebrations are aiming for.
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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”.
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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 sounds like it’s about to fall apart and it only has 6000 miles on it. I took it to my local dealership since it’s still under warranty and they said all the sounds are coming from the modifications (although I don’t really believe them–one of the sounds is coming from the front wheels which weren’t modified). So now I have to take it to the place that modified it that’s 3 hours away and I know they’re going to say they can’t find anything wrong.
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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.
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I see a good and bad reason for it.
When I was younger and could still walk a little I never really associated myself with wheelchair users. I didn’t even use a wheelchair, I used a scooter. So services like this that seemed geared directly toward wheelchair users I wouldn’t look into because I didn’t think they applied to me even though I might have been able to use the service. I think the rebranding is good in this sense.
But on the bad side, it feels like there’s this push recently that acknowledging someone is disabled or in a wheelchair is somehow offensive. I’ve watched well meaning people think they’re being “ableist” by just describing someone using a wheelchair. I’m afraid they’re changing the logo in response to that.
Aside from that, I’m not a fan of the new logo. It took me about a minute to figure out what the drawing was. And then once I figured out what the new one even was, it looks like the dog is facing away from the person, like it doesn’t want to be there, but just looks back for a second. The old one is pretty clear the dog seems happy to be with the person.
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DeAnn, didn’t you have covid already too? Reinfections still seem surprisingly rare, so between that and being vaccinated I’d say you don’t have a lot to really worry about. But it’s really up to how comfortable you feel. As the others have said, in this case, get a mask that protects you rather than a standard mask that’s more for protecting others.
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Thank you for putting up links to whenever they’ve offered these packages. One of the items from an earlier package helped save me from a bad situation a couple weeks ago: I fell off my chair when transferring from my bed and I had my tv on and my phone wouldn’t recognize my voice over the tv (I live alone), but the Amazon Echo device I got from an early package could hear me and I was able to call for help. I probably would have never bought one of those on my own since I always figured my phone could do all the same stuff.
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I try to name them by the room or the main thing they’re next to. I only have lights set up so I’ve got “computer lamp” “bed lamp” “living room lamp”. I’ve got some others next to my bed I never use and shouldn’t have bought, so they’re named “stupid lamps”.
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I’m reading the Mike Nichols biography. You can live vicariously through me while I live vicariously through him. It’s a good book, but almost tiring how many famous people he was always around.
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I run into the issue with family where I get told: “Call me if you need anything!” I ask them for help with something. “I’m working, can I come some other day?” I say okay and never hear from them again. The thing I wanted help with breaks and I need it fixed immediately so I ask again. “Why didn’t you ask for help earlier?” Sighhhhhhhhhhh.
I much prefer paying for something to be done unless it something simple and getting a professional will cost like $125 for a visit for something that takes 2 minutes to fix and that I know how to fix but simply can’t do it myself.
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DeAnn, did you ever get new armrests? I stopped even trying to use my new chair because the ones I have are so uncomfortable.
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I asked Kevin to look into this a long time ago. I ended up having to change my email to a broken one so I’d stop being spammed.
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Unless you take it regularly for something else, it’s not recommended to take Tylenol or aspirin before the shot.
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Yep, 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.
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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 than my foot?
I’ve given up on these socks because I’m afraid at this point even if I manage to get them on I’d never get them off. I might look into the wraps.
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And then it’s even more frustrating when someone finally does come to help and I try to explain what I want done. I’ll tell them “just tighten that screw right there”, and they’ll look at me and then go outside and take a tire off my van. And I’m like wtf that wasn’t even close to what I said to do.
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Power adjustable footrest height is definitely available. I really wish I got it when I got my chair. I was told I can add it still if I want, but it’s not something insurance will cover for me. It also requires a different footplate (a single plate rather than split) which wouldn’t be as wide as the ones I have now so that might be worse.