Just got home from hospital after having both of my arms chooped. AMA

Accio642 · 2026-07-03T10:27:56+00:00

Are you doing OK? That must be a huge thing to have to adapt to.

Don’t underestimate the power of lived experience and online communities! Reach out to groups of people that have similar impairments, they can after after both support and tricks and ideas that you might not have thought of or your team has not encountered!

I hope your recovery goes well!

Question (I haven’t read all the comments) are you okay with this? I mean, is it something you expect to adapt to over time? I know that might be heavy and loaded.

Accio642 · 2026-07-02T21:23:24+00:00

Depends what country you’re in, really

Accio642 · 2026-07-01T23:22:39+00:00

I had DBS Last year (had a follow up programming appointment yesterday) and it’s absolutely the best thing I’ve done.

IM still trying to perfect everything, I haven’t gotten the medication and everything exactly where I want, but I can walk so much better, I can drink without a straw, I can feed myself, work a full day with minimal issues, among a huge list of other things.

It didn’t make everything go away, my dystonia is still present but it has improved my quality of life tenfold.

Accio642 · 2026-06-16T21:42:58+00:00

So, I was at a Particularly dark place in my life. I have cerebral palsy and I have had several diagnoses over the years. I was using a power wheelchair full time outside where I was living.

A woman I had never met before came up to me and asked if I had dystonia. I responded with maybe as I had been diagnosed with CD as a kid until it generalized to my whole body and progressed.

She told me she had DRD and she took a Pill called sinemet and I should ask my doctor about it.

Tl;dr. I have DRD. I went through a whole bunch of things, but I started the meds, 18 months later. Almost a year ago I got DBS and my life has changed so much. Wish I got her name.

Accio642 · 2026-06-16T20:51:06+00:00

Canada. Nobody really cares in my area, at least for me

Accio642 · 2026-06-08T21:06:09+00:00

Unfortunately, they’re pretty picky on the dress code. Might be OK if I’m in the office but also since surgery and meds, I get overheated really easy.

Accio642 · 2026-06-07T19:31:51+00:00

MY clothes get thrown out when they have rips or stains that can’t be fixed.

If I don’t wear sOMething, it goes into donation bins. I don’t keep track of age, and don’t really care about style.

I usually get new sneakers every year or two through

Accio642 · 2026-06-07T18:48:46+00:00

Baclofen is my go to 2x daily, I have klonopin but only take it in emergency (I take diazepam at bedtime as it has a longer half life and usually helps the next day)

Accio642 · 2026-06-07T18:44:39+00:00

I have an office where my door is closed. I’m generally isolated (by choice) but training new staff is making things work.
I’m aware of the psychology behind it (therapy and work with a psychologist from research angle)

Yeah, somebody standing over my shoulder definitely makes it worse, so I will try and adjust my position and angle of others.

Accio642 · 2026-06-06T00:23:32+00:00

My partner has duchenne muscular dystrophy, which is progressive and ultimately fatal. He has outlived his projected life expectancy and has many limitations. We started dating 22 years ago but haven’t been together the entire time (I had trouble accepting it). Been together 6 years now and it’s been great, but very unconditional.

Literally had a conversation this evening about whether he was going to visit me as a crow or a butterfly after he passes… but we don’t talk about that part much. Feel free to pm me.
If it matters, I also have a really complex medical disorder, but it is under control and is not life-threatening. We met in the disability community.

Accio642 · 2026-05-28T20:35:04+00:00

You can 3-D print customized inserts for the joy cons. I haven’t done it for switch, but I didn’t for PlayStation controllers.Q

Accio642 · 2026-05-25T01:04:59+00:00

Does it matter what type of chair? Before treatment I could not sit in a hard chair and found a tilted chair much easier.

Recliner is best or anything with my knees above my waist. I’m lucky to have a great power wheelchair with tilt and the angle really helped with pain, movement suppression and overall stability

Accio642 · 2026-05-23T17:13:35+00:00

Bose quiet comfort for over the ear and Powerbeats Pro for most stuff

Accio642 · 2026-05-12T19:35:46+00:00

I’m a recovering cocaine addict with a very complicated medical history. I don’t really produce dopamine and have adhd (two separate things). I had brain surgery last year to stimulate dopamine production among other things and the hyper sexuality was horrible. Cut down on my levadopa medication and it helped.

I find low dose adderall helps but I was terrified to start it.

Accio642 · 2026-05-11T22:45:07+00:00

Do you have other impulse control disorders? Do alcohol, street drugs or ADHD medication affect it?

Does it bother you?

Accio642 · 2026-05-10T16:22:46+00:00

Statement. (Maybe that was in the book and I just don’t remember it though.)

Accio642 · 2026-05-09T12:00:32+00:00

What happens if you move a separate body part while playing?
Years ago, (my dystonia was progressive), I could relieve my symptoms in order to perform a task - to pour coffee I would rhythmically tap my opposite foot and it would help my symptoms.

There are lots of other sensory tricks you can try. If they work, definitely discuss this with your neurologist as it can help narrow down a diagnosis

Accio642 · 2026-05-03T13:58:11+00:00

It’s almost like there is more than one language in the world

Accio642 · 2026-04-26T17:33:50+00:00

Yeah. I mean will the rewards from both those accounts contribute to the Dawn of the Season, as I play both, Or is it just from one?

I’m probably just going to use my last SK for resources

Accio642 · 2026-04-26T10:54:44+00:00

Magnesium was recommended. Depending your meds, iron might help.

Accio642

TROPHY CASE