lupa-f
Forum Replies Created
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There’s the famous Craig T. Nelson (the actor from Coach/Parenthood) quote that applies here to how people think of independence differently: “I’ve been on foodstamps and welfare, did anyone help me out? No.”
I think of independence sort of more along the lines of what defines disability: can I do basic life functions without someone else’s help, like eating, sleeping, hygiene. If I can’t do those basic things alone I don’t consider it being independent. Now obviously, someone else created the food that I eat or provides the water to my apartment, but using that as a definition of independence reduces the idea down to being useless because then nobody who participates in society could be considered independent.
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I’ve mentioned it before, but as a type 3, I’ve never had to deal with many of the issues that type 2s do and it took me a while to figure out that’s why I’d get weird questions from doctors. I’ve had to push back against some doctors wanting to do tests and things on me that were completely unnecessary. I had a new doctor a few years ago wanting to do a bone density test and I had no idea why. I’ve never broken a bone in my life and have never had any sort of issue that would make that kind of test necessary. The only answer I got when I asked why was “just because” so I never did it.
And then on the other side I have a hard time getting advice on how to do things because the solution is often “have your caregiver help you”, but I’ve never had caregivers. It’s always been frustrating when I would look up stuff on “independent living” and they would refer to caregivers doing things for you. That’s not independent to me, at least.
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There have been a few people who’ve competed in both the Paralympics and Olympics. Of course the most famous one is also a murderer so that’s not great.
But Olympians aren’t like most people anyway so I’m not sure why you’d expect any sort of equal representation.
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I actually have a big tub of it that’s been sitting on my counter for years now. I didn’t stick with it long enough to see it did anything though because I don’t like making the shakes. Looking it up now I see there are pill versions so maybe I can try that because I tend to be a lot better taking those.
The other thing I tried a long time ago was creatine but that gave me headaches almost immediately every time I took any.
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The idea that something would be lost by eradicating a disease seems a bit strange. Do people who have had covid look sadly at those that haven’t had it yet and wonder how those people cope with not having to live through it?
Are there people that are like: it sucks that polio was eradicated because “living with (polio) helped teach and enforce empathy, resilience, gratitude, community, creativity, humility, spirituality, patience, and maturity, and these qualities are key components of the adults we became. I don’t want future generations to endure the challenges we’ve faced, but I wonder what will foster these traits in them if not (polio)?” You can substitute almost any bad thing in there and have the same sentences, but then you’re essentially advocating that bad things should happen to people.
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I actually like this time of year because nobody expects me to go anywhere so I can plan to learn new things without having to worry about appointments or going out. Of course I end up being lazy and never completing anything, but at least I know that’s my own fault rather than not having time to do it because I had to do other stuff.
I also don’t like the Sun so this time is great since it’s only around for about 10 hours. I much prefer being able to control how much light is around.
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Ok and now WTF with the IQ study? They threw out the results of the guy that scored in the 140s but left in the one that scored in the 60s. Someone with IQ scores in the 60s has something else significant going on with them that’s not SMA.
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I’m sorry about the armrests. I’ve not used the new chair I got 2 years ago because of the armrests. I was hoping once you got your better ones I could show my rep what to get, but guess that’s not happening. I don’t understand how Permobil doesn’t have normal padded armrests available. Everything else on the chair has 5000 options that almost nobody needs but then they design the most uncomfortable armrests ever and don’t make any other options.
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The one thing I worry about with the way she talks about Evrysdi is that it seems like she thinks it might be a miracle cure that’ll stop many of her current problems. But Evrysdi and Spinraza don’t work well or at all for a number of patients and I think it’s especially true for people with very severe SMA.
Also, as shown in the Spinraza article posted her a little bit ago, there’s no justification for the cost of either of these drugs so it’s hard to fault places for choosing to not pay the extortionist prices placed on them by their companies.
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Well after writing that, I started looking more at SmartThings and apparently Samsung no longer makes the hub for it. I did find a brand of hub called Ezlo that can run completely offline and has a battery backup, but it is somewhat expensive (>$200). If you’re extremely reliant on home automation that might be a good thing to check out. (Again, I don’t have one, but it looks like exactly what you might want.)
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Sigh, I guess the Ezlo thing isn’t great either (they don’t have great software). I should research before typing. There are still other brands, Hubitat seems to be pretty decent, but I’d just suggest searching for hubs that don’t need the internet and read all kinds of different reviews.
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Maybe a dumb thing, but you seem to be using WiFi and internet interchangeably, but they’re two separate things. Your internet could be fine, but WiFi is failing and vice versa. Your WiFi can work even if you don’t have internet, like I can disconnect the cable on my modem and can still control my lights with the app on my phone since I have a hue hub which doesn’t need the internet. Alexa does not seem to work without an internet connection however, so if that’s your main way of controlling things that would fail if either internet or WiFi is bad.
You can maybe hardwire your modem directly to a pc or laptop with an Ethernet cable and that would let you rule out if it’s the internet or not. Another way to check which might be failing is with your phone: I’m assuming it’s connected to your WiFi. It should have a symbol showing if the WiFi is still connected when you try to control something.
You might want to look into automation solutions that don’t require an internet connection. Samsung’s IoT setup (SmartThings) has added features recently to allow it to work without an internet connection, but I think you have to make sure to configure it all properly and would need to buy a hub. I don’t have a SmartThings hub so I can’t tell you how complicated it might be to set up.
Another thing, it sounds like you got your modem from the internet/cable company: If you have a tech person you trust, you could also maybe have them buy you your own modem/router. It usually starts saving you money after a year or two. When I switched to my own my modem fee was like $10/month and the modem I bought was only $110 and I used it for 4 years which would’ve been nearly $500 in rental fees (I did recently buy a new more expensive modem but even it’ll pay for itself in less than 2 years).
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It’s funny you guys see no need for a neurologist. I’m exactly the opposite. My main doctors over the years have only been neurologists. I only got a pPCP because Medicare wants it and I also needed a local person to sign paperwork. My PCP has no clue what SMA even is and lets me tell him whatever I need. I also have no other issues than SMA so it never occurred to me to not go to doctors that specialize in it.
I just had my 14th Spinraza injection 2 weeks ago and so far I seem to be holding steady at a level a little bit above where I was when I started it.
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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 investment. Since my alexa isn’t that close to my computer desk, I stuck one of those to the side of my desk and just tap it to turn on my desk lamp and then use alexa to turn it off when I leave my desk, it works nicely.
As far as not interfering with others, I definitely try to do that. Whenever I’m out somewhere I almost feel like I try to hide so I’m not in the way of others. I’ll try to position myself in a corner or out of any pathways as much as I can. The funny thing is this doesn’t work in a place that’s crowded no matter how out of the way I think I am. Like at a crowded concert what happens is people see what looks like an empty space so they try to get where I am only to find me there and then have to maneuver themselves back out again.
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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 lot of settings you can only access in the programmer. (Here’s the manual: https://www.permobil.com/us/wp-content/uploads/2016/11/R-net-Electronics-Technical-Manual-v6.pdf)
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Was there some reason my previous response to this was deleted? That’s some pretty shady moderation.
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The correlation is definitely not 100%, for instance I have 3 copies and am a definite type 3 and many of the type 2s here also have 3. In that terrible IQ study that was posted here a bit ago, there was a type 1 that I think had 6 copies.
But the amount of copies does make a clear difference in some respects: During the early Spinraza trials those with 3 copies did much better in general than those with 2 (I don’t think they had other amounts in that trial).
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“Without SMA, I would not have learned how to sit entirely still and look at a single painting in a gallery for half an hour. I would not understand how interdependent humans are and how much value dependence and community bring to my life. I would not have the empathy that I do for other marginalized groups – for people of color (who are also treated differently because of how their bodies look), for LGBTQ+ people (who know what it’s like to have to break free of other people’s expectations of your sexuality), for those living in poverty (who are intimately familiar with exhaustion and fatigue from living hand to mouth).”
But SMA doesn’t make you do any of those things. Why couldn’t you do those things if you didn’t have SMA? None of them are dependent on not having working muscles. There are plenty of people who do the same things without having SMA.
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I searched all over for waterfall armrests for a Permobil chair and couldn’t find any. Do you know who makes the ones you got?
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I’d temper any excitement as an adult. The trials weren’t too promising for us. Most of the good results came from children under 5. In the 5-21 group, a third had no benefit and only another third had a real positive effect. And it’s possible many of the good results in that group were on the younger end of the range.
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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 there’s no way being on it could save any money.
The paper shows more detailed data than what the summary covered and it’s even worse for Spinraza. For types 1 and 3, the median cost per patient is higher for patients who continued Spinraza than for those that discontinued it. If you look just at those numbers it means Spinraza is worse for patients than not using it at all!
But the study is kind of a mess because they did no statistical analysis and for many of the numbers the standard deviation is bigger than the mean. So a few outliers with extremely high medical costs are throwing the numbers way off. Most of the median numbers (50% above/50% below) are significantly smaller than the means.
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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.
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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).
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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 that I can’t reach easily. I’m guessing that might be too hard to do though since you wouldn’t be able to hold the roll in place, but might be fun to figure out if you can do it.