[sasha]

The game does not seem fun, maybe only for very young kids. You just crawl slowly through a big map, did not see much gameplay.

After 10 minutes I found an area where you are supposed to put a ball into a hole by shooting into it (no reward after that). Did not figure out how to leave this area after that, clicked everywhere but was only moving in circle.

The controls are quite confusing, often it is unclear where the character will go after clicking, and where it can go.

In general for type 2-3 SMA I think the main thing to implement in PC games is customizable keybindings, maybe some accessibility settings like simpler QTE etc.

I can play most of the normal games. Usually just need to rebinding some controls to more convenient keys, maybe enabling things like toggle crouch/sprint/aim. Sometimes (if the game settings are not flexible enough) I use tools like AutoHotkey (e.g. I used it several times to bind some keys that were not rebindable in game to caps lock, `, etc., and to help with some weird QTE). Sometimes in games where you have to drive a car by holding W and using A+D for turns (instead of controlling the direction by mouse like in GTA) I rebind W to Space or ALT that I can press with my thumb, or to an additional mouse button, also sometimes I rebind turns to S+D for easy control with a single finger. For aiming I sometimes use X instead of or as an alternative to RMB (some games allow to bind two keys/buttons to one action and use whatever of them you prefer).
<p class=”_1qeIAgB0cPwnLhDF9XSiJM”>Some games are also starting to add interesting accessibility options like simpler QTE (hold instead of tap, or how much “power” a single tap has), double/triple W press for sprint in RDR2.</p>
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btw this game worked on Linux for me 🙂 (via Lutris + Wine)

[sasha]

I get the impression that some think type 2 individuals are over represented.

Never heard that, but I guess it makes sense because type 1 were not surviving much until recently, and 3-4 are less severe (+ maybe less common?).

Type 1 is supposed to be the most common type though, but maybe this forum is not popular among the parents.

On some other resources (e.g. some Russian youtube channels) I actually saw lots of content mainly for type 1 (parents) like handling ventilators, non-verbal communication.

[sasha]

cocktail to include Spinraza and Eversdy

This makes no sense, they affect the same thing. Evrysdi is good when Spinraza is too difficult to inject, but it often has side effects, so why use it when you can use Spinraza.

The combination makes sense for meds like Apitegromab.

For wearing out, I think there are some trials looking into increasing dose or frequency.

[sasha]

 in Texas, originally from Mexico

How did you move? I always thought it would be extremely difficult to get medical insurance for a new citizen with an already existing severe disability?

I am from Europe, software developer.

[sasha]

I wear glasses all day. The only issue is cleaning them, need to ask someone to do that 1-3 times per day.

Also one possible issue is that they may fall off after some time, but wearing retainers like Wedgees and/or full size headphones prevents that. I guess adjusting the frame at the optician until it gets perfect may help too.

[sasha]

The truth is that unless you have money and/or many friends, sooner or later you life will become very miserable. At least for countries not providing some kind of more full time caregivers etc.

Luckily, earning money remotely is quite feasible nowadays, especially in IT, programming etc. There are many courses and other learning materials for such professions, and there are companies that offer working remotely, especially since covid.

One way to make it easier for your mom, is hiring someone to help with the most difficult tasks like bathroom/toilet/transferring from/to bed, etc. It should not be expensive if the person lives near you. Try asking the neighbors about that, putting the ads near your house. That’s what Valery Spiridonov was doing when he lived in Russia.

Also there are some devices that can help with the transfers. Floor/ceiling lifts (подъемник), portable toilets with wheels (туалетный стул). The floor lifts cost from around 2k EUR, maybe try crowdfunding if the government does not compensate it.

And yeah, both of the currently available treatments for adults are not really life changing. You may get some improvements (e.g. breathing, speech, lifting arms a bit higher), but you will still need the same 24/7 care. But the disease progression should stop at least.

[sasha]

I think mouse + keyboard should be the most accessible compared to other standard options, especially if you use it every day for other tasks. Experimenting with the mouse/keyboard size, additional mouse buttons, desk height, keyboard/wheelchair tray etc. could help.

Currently I use a low-profile keyboard in a tray below the desk, and a Logitech mouse with additional buttons for binding some keys.

 

[sasha]

I think Razer has some smaller mice like Viper Mini.

Or Logitech G102/G203, Steelseries Rival 3.

I also like when there is an additional button on top to assign some hard to reach key to it. I wonder if there is any small mouse with two buttons on top.

[sasha]

What kind of strap do you use? Can you give a link?

[sasha]

With Skype able to call landline numbers

I think it can call any numbers, though for mobile it can be expensive (at least in my country).

[sasha]

The one thing I have to say that I don’t like about it is that there is no warranty. I asked the rep about that and he said no warranty or replacement if it stops working.

hm, their website says 2 years.

“For two (2) years from the delivery date, Kinova guarantees that any defects in materials or workmanship will be covered without any cost to you.”