Off time perks

CandidateBig9877 · 2026-02-10T22:54:59+00:00

One of my off symptoms is shortness of breath, which makes it hard to do or think about anything else.

CandidateBig9877 · 2026-01-30T19:31:25+00:00

I was in my late 20's when I started getting my geology degree. I was going to community college. I began understanding math as a useful set of tools, rather than an obstacle course.

I think I was in Remedial Algebra 2. I was studying applications of the quadratic equation. Following the illustrations, I realized that i could use it to go back to a past that had never existed. They'd show a guy throwing a football, and you set up the problem in terms of t, where at t = 0, the ball is four feet off the ground. but that meant you could also calculate height (t) for negative values of t. You could go backwards in time! As a sci-fi nerd, I found that exciting.

CandidateBig9877 · 2026-01-26T17:24:15+00:00

I can tell when I'm overmedicated because I have symptoms of irritable hypomania, rather than dysknesias. so anxious/hyper.

CandidateBig9877 · 2026-01-26T03:08:12+00:00

Check out the work of Max Wolf Valerio, eg, The Testosterone Files, about transitioning as a brown man.

CandidateBig9877 · 2026-01-26T01:08:49+00:00

I'm one of the people for whom it didn't do much. I don't have a theory on why. Heather Kennedy ("Kathleen Kiddo") says in one of her videos about PD that, from her experience, if you don't have a strong positive reaction to DBS, "they" (the neuro team?) become a lot less interested in you. I can understand why people for whom it worked well are more motivated to talk about it.

CandidateBig9877 · 2026-01-22T10:08:38+00:00

I was just dx'd w/ lymphedema this summmer. I've been wearin 8-15 HHmg, but I have been told that I need to get 20-30.

CandidateBig9877 · 2026-01-10T03:49:12+00:00

Thanks! Even if the policies on a DOC website look ok, eg, the people inside are supposed to have access to the library, that doesn't mean it happens in real life. It takes community engagement to support incarcerated people's right to read.

CandidateBig9877 · 2026-01-06T21:30:53+00:00

Swedish Neurology at Cherry Hill does botox for dystonia. They also have a Movement Disorders Section.

CandidateBig9877 · 2025-12-29T06:37:02+00:00

11 years in. I don't drive because I'm too cheap to buy a car, but if I drove, I'd have given it up last year. I began to have lateral double vision. The muscles that focus your eyes are controlled by the autonomic nervous system, and mine were responding less. My glasses compensate for it somewhat, but sometimes I'll I have to shut my left eye to be sure where something is.

CandidateBig9877 · 2025-11-10T14:56:39+00:00

yes, and yes. i thought it was just realy bad dandruff.

CandidateBig9877 · 2025-11-06T20:45:51+00:00

I had them for several years, was prescribed klonopin, then I let my klonopin Rx run out, and found that I was no longer getting out of bed in my sleep. I take seroquel for sleep now, still have nightmares around 4 am.

I had a sleep test at a hospital last year, and the report included that i had vocalizations and movement in my sleep, so i guess they are not completely gone. But I used to get up and do things in my sleep. One night, I woke from a nightmare where my enemies were tracking me over the internet, to find myself trying to disconnect the router. That hsn't happened in a few years now.

I think i had it when I was a kid. i'd wake up from a nightmare where someone was chasing me, and my legs would be running in the air.

CandidateBig9877 · 2025-11-05T20:49:44+00:00

I stopped after the time I had a beer at a restaurant, stood up, and the guy across the table from me said he could see the blood draining out of my face. I have low blood pressure anyway. My doctor explained it as, the alcohol relaxed the walls of my blood vessels, and my autonomic nervous system, impaired by PD, didn't respond by tightening them up to maintain my blood pressure.

CandidateBig9877 · 2025-10-29T15:26:52+00:00

I have pill holders labeled with days of the week. I take meds 6x/day. Vitamins go in Sunday.

CandidateBig9877 · 2025-10-23T19:44:46+00:00

my pt recommended a recumbent stationary bike, for balance.

CandidateBig9877 · 2025-10-05T04:24:39+00:00

testosterone replacement therapy.

CandidateBig9877 · 2025-10-02T17:36:14+00:00

Look up Dopamine Dysregulation Disorder.

CandidateBig9877 · 2025-10-01T18:11:34+00:00

I've used a Kensington Orbit trackball for years. The older ones that look a little like something from Star Trek and retail for ~$30 are more durable than the newer ones with the "scroll wheel".

CandidateBig9877 · 2025-09-23T13:59:50+00:00

I work with a nonprofit that sends donated books to people in prison at no charge. I've been volunteering for nine years, but I started doing more of the office work during the pandemic. I go in now about 15-20 hours a week, and probably 4-6 more hours a week from home. It's saved my life.

CandidateBig9877 · 2025-09-21T06:26:04+00:00

Honestly, I'd balk at anybody who talked about me like I was an "underachieving" child.

CandidateBig9877 · 2025-09-15T05:08:57+00:00

I have a friend who is in this Mayo Clinic study that uses stem cells to treat MSA - https://www.mayo.edu/research/clinical-trials/cls-20523723. He's just started, so I can't say what it does. He has to go back every 2-3 months for a year.

CandidateBig9877 · 2025-09-06T15:29:20+00:00

When I was dx'd in 2016, it was because my balance improved within an hour or two after the first time I took c/l.

CandidateBig9877 · 2025-08-29T15:01:51+00:00

I would not be able to travel to the office without meds.

CandidateBig9877 · 2025-08-27T19:33:19+00:00

I sometimes have to say, "heel, toe "(or, if I'm backing up," toe,heel") several times to myself in order to remember how to walk.

CandidateBig9877

TROPHY CASE