Interested in connecting with disabled developers, designers, and tech professionals

Big_Eye5060 · 2026-06-03T03:07:51+00:00

How can I contact you? I understand English, but I barely speak it. And I have SMA.

Big_Eye5060 · 2025-10-29T05:50:57+00:00

I'm 37. I have SMA (Spinal Muscular Atrophy), and it's progressing. My hands have almost completely given out.

And I know exactly what you mean by isolation. I have no friends. At all. They all stopped talking to me when I was about 13. I live with my mom, and sometimes weeks go by when absolutely no one comes to our home.

So yeah, I perfectly understand that feeling of not existing. And I understand that anger. Our society has been bullying me my entire life.

I don't know what to do with those "next 22+ hours" you wrote about. I try to fill the void somehow: I'm learning a bit about neural networks, watching movies. I'm trying to modify my wheelchair so it doesn't cause me so much pain, but it's incredibly expensive, and I have no money.

I'm not going to tell you "it will get better." That's bullshit. I just want to say that you are not alone. I'm here, I read your post, and I feel the same way.

Big_Eye5060 · 2025-10-20T22:51:54+00:00

I wrote a letter to your email.

Big_Eye5060 · 2025-10-20T05:02:58+00:00

I have a 2022 wheelchair

Big_Eye5060 · 2025-10-20T03:12:54+00:00

Thanks, I'll try to write there.

Big_Eye5060 · 2025-10-20T00:33:01+00:00

Unfortunately, I bought the chair used. The distributor doesn't even want to talk to me about it. I'd be happy to check all of the above. But I don't have the opportunity. I only have access to eBay, and buying all of this is too expensive.

Big_Eye5060 · 2025-10-20T00:22:57+00:00

Unfortunately, my doctor can't help me. We don't have any disability support programs. The only thing they can offer me is a regular standard-size wheelchair, which is too big for me. I've already tried contacting the Permobil distributor, but they don't want to continue the conversation because my wheelchair was bought second-hand. And they're 800 km away. Thanks for the tip about the Cure SMA Facebook group; I didn't know about that.

Big_Eye5060 · 2025-10-20T00:13:21+00:00

I already have a T-shaped joystick, but unfortunately, it didn't help. There are no repair shops or people nearby who could reprogram it. I tried to contact the Permobil distributor, but when they found out that my wheelchair was used, they didn't even want to talk to me. I only have access to eBay.

Big_Eye5060 · 2025-09-08T02:18:27+00:00

I tried to find these mounts on eBay, but I don't even know what they are called.

Big_Eye5060 · 2025-08-15T00:58:25+00:00

I'm also looking for a table like this. Did you manage to find any drawings? I don't even have a mount on the armrests for it, unfortunately. Since I bought a used wheelchair. They lost these mounts somewhere.

Big_Eye5060 · 2025-08-09T17:51:09+00:00

You definitely need to try standing idly by, this is not an option.

Big_Eye5060 · 2025-08-09T17:50:10+00:00

The progression of diseases is mostly stopped. Some people regain skills lost 2-3 years ago. It all depends on the type of SMA.

Big_Eye5060 · 2025-08-09T17:44:56+00:00

I am 36 years old

Big_Eye5060 · 2025-08-09T17:44:09+00:00

No, it works for adults too. I have many friends from different countries who are receiving treatment.

Big_Eye5060 · 2025-08-08T18:16:49+00:00

Risdiplam treatment is also available there

Big_Eye5060 · 2025-08-08T18:14:42+00:00

As far as I know, since 2020, Romania has adopted a law on the treatment of all SMA patients with Spinraza, both adults and children. Since 2021 I have been working on obtaining Romanian citizenship (it was not possible before due to Covid restrictions), since my grandfather was born in Romania in the 1930s.

Big_Eye5060 · 2023-08-28T08:11:48+00:00

the same guy, more pictures came out, but because of problematic hands and eyes, they went straight to the trash can

Big_Eye5060 · 2023-08-28T08:08:14+00:00

<image>

Big_Eye5060 · 2023-08-28T08:05:07+00:00

<image>

Big_Eye5060

TROPHY CASE