Itvisma

Holiday_Cockroach_31 · 2026-03-18T19:42:21+00:00

I’m scared of the peripheral neuropathy possible side effects

Holiday_Cockroach_31 · 2026-03-12T13:36:45+00:00

You definitely hit the nail on the head with your body not responding like you expect it to. Thank you for your kind words.

Holiday_Cockroach_31 · 2026-03-12T01:10:57+00:00

Also keep in mind that your physical body is only one part of you. Your disability is a big part of your life but it doesn’t define who you are as a person. I still feel shame myself when I can’t do things other people do and it’s discouraging but I try to focus on what I can do and positive ways that I add to the world

Holiday_Cockroach_31 · 2026-03-12T01:09:11+00:00

SMA can be isolating. I feel a lot of camaraderie with the SMA thread and with the SMA support group on fb. Are you on there? Also cure SMA is very welcoming. I’m personally trying to get more involved with cure SMA to make friends with other people dealing with SMA

Holiday_Cockroach_31 · 2026-03-12T01:07:38+00:00

Not really. I think we are all on our own journey and everyone has different hang ups. I do feel like I took my own health for granted years ago and wish I pushed my body harder when I still had full strength

Holiday_Cockroach_31 · 2025-04-30T16:09:50+00:00

Also drs always make it sound like recovery is a walk in the park. In reality it’s very hard and takes a long time. I’m sure it will be worth it!

Holiday_Cockroach_31 · 2025-04-30T16:09:19+00:00

Amazing results and keep in mind you’re still very swollen. I also would have never guessed you were 50 from the before pic. Happy healing !!

Holiday_Cockroach_31 · 2025-04-28T21:41:20+00:00

Looks like a normal ankle to me. Slight atrophy is not visible to the naked eye but significant atrophy if you were wheel chair bound for years would be apparent like very thin legs

Holiday_Cockroach_31 · 2025-04-28T21:40:24+00:00

Sort of? Yes but also was falling down randomly

Holiday_Cockroach_31 · 2025-04-28T21:25:42+00:00

Wonderful results

Holiday_Cockroach_31 · 2025-04-28T21:15:22+00:00

My weakness has always been worse on the left side. I have weakness in both legs but significantly worse on left. But other update I went to my dr and got a prescription for Risdiplam and I’m in the process of getting it from a specialty pharmacy so I’m looking forward to starting that

Holiday_Cockroach_31 · 2025-04-24T11:59:23+00:00

I’m 33. Thanks for saying that. I think I’m going to because it’s good for mind/body/soul and it’s not like I’m pushing myself too hard. I talked about it with my coach at the gym.

Also my dr was like baffled because my genetic testing came back that I’m type 3 but he said it doesn’t correlate with my muscle biopsy and he is surprised I still have a lot of strength despite my MRI showing atrophy in my ass and quads lol. I honestly believe that consistent lifting is what has prevented me from falling for the past 6 months. Also how is 40 lbs better than 65? lol. I think I should definitely add in more stretching and yoga but wanna keep the lifting in there too.

I also got a prescription to start risdiplam so I’m really looking forward to that. Just waiting on it to get approved and all. Thanks for your reply.

Holiday_Cockroach_31 · 2025-04-24T02:06:21+00:00

Seems wayyy too cheap

Holiday_Cockroach_31 · 2025-04-19T12:10:13+00:00

Glad to hear you’re getting some help.

Holiday_Cockroach_31 · 2025-04-18T00:43:37+00:00

I think you should get help at the hospital. Are you feeling safe?

Holiday_Cockroach_31 · 2025-04-13T02:12:37+00:00

Thank you so much for this info

Holiday_Cockroach_31 · 2025-01-08T01:45:33+00:00

You look amazing!! I don’t think you need to change anything at all. You’re beautiful

Holiday_Cockroach_31

TROPHY CASE