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by ofek 816 days ago
This makes me very excited! I have Spinal Muscular Atrophy type 2 [1] and I have lost most of my physical capabilities save for 2-3 fingers and of course speech. Although I am now on Nusinersen [2] treatments I am still becoming weaker over time, albeit extremely slowly.

It brings me comfort to know that such a fallback will eventually exist, should I need one.

Note that specialists are saying that another promising drug from Scholar Rock [3] would probably prevent any further weakening if used in conjunction with my current treatment. Unfortunately, the FDA takes a long time to approve new medications and I have heard this one is particularly special because there is potential for abuse by athletes.

[1]: https://en.wikipedia.org/wiki/Spinal_muscular_atrophy

[2]: https://en.wikipedia.org/wiki/Nusinersen

[3]: https://scholarrock.com/our-pipeline/spinal-muscular-atrophy...
2 comments
jackblemming 816 days ago
I hope you can get on that promising drug ASAP and that it works wonders. I think the future looks bright for medicine with all these new breakthroughs coming out.
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ashildr 815 days ago
I‘ve been wondering if Apple‘s AR Headset would be a useful tool for people in similar situations. Did you have a chance to try it, yet?
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diggan 815 days ago
Doesn't that headset require you to be able to move your head in various directions, and be able to use gestures and such? I just looked at some videos during the release, and those things seems to be a pretty fundamental part of using it.
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ashildr 806 days ago
From what I understand the headset can be configured to be used without moving the head and even to use eye tracking, only, instead of the minimal finger gestures.

https://support.apple.com/en-gb/guide/apple-vision-pro/tan42...

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throwaway11460 815 days ago
You don't necessarily need to move anything other than eyes. It's the default input method, but it doesn't require it. It's a computer, it can connect to other devices or use APIs.
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diggan 815 days ago
So if you use a headset meant for spatial movements, but you're unable to do spatial movements, can't you just use a display and get exactly the same experience?
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whamlastxmas 815 days ago
A very close experience yes. It works just fine with zero head movement and you can move and adjust your windows to only be directly in front of you. And they are by default
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throwaway11460 815 days ago
It's not the same experience. Display is never going to give you full immersion.

Not saying which is better - it's certainly different though.

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