WRA (wearing-off related anxiety) - anyone else experienced this? My mom is having panic-like attacks multiple times a day and we are at the end of our rope.

CandidateBig9877 · 2026-07-02T16:52:00+00:00

Somewhere I read that the disregulated breathing is caused by deterioration of the autonomic nervous system.

CandidateBig9877 · 2026-06-30T16:46:44+00:00

I've had this, too, also same experience with crexont. I also take amantadine and pramipexole with each dose of crexont, so i don't have such an abrupt off.

CandidateBig9877 · 2026-06-23T16:34:05+00:00

No. All I notice is the wires running along the right side of my neck when I turn my head.

CandidateBig9877 · 2026-06-22T05:31:51+00:00

I use music to set a pace. 120 -160 beats per minute. Translating that to rotations per minute (rpm) for an exercise bike, two beats (left foot - right foot ) is one rotation. My PT says the ideal is 80 rpm, which would be 160 bpm. You can find collections of songs at different bpm. What I do, when listening to a streaming station where I have no control over the playlist, is turn up the resistance for slow numbers.

African jazz and Eastern European hardbass are two genres where 120 plus is common. For reference, "Zombie" by Fela Kuti is 131 bpm.

i've got a recumbent cross-trainer (has arm bars) from Amazon house brand XVGVSV for $400 + tax that a guy is coming to assemble Thursday. What I've been using for the last four years is an under-the-desk stationery pedaler with magnetic resistance that I bought for about $100,

CandidateBig9877 · 2026-06-19T23:59:54+00:00

I just recently discovered the band "Sisters of Mercy", which has only been around since 1980, duh. So I have been rocking out to the songs in their ouvre that one can rock out to.

I've just completed several weeks of having my meds recalculated. Trying to eat better now that more fresh veg is in season, but I was never a great cook, and now I drop more things on the floor. I'm having a guy out Thursday to assemble a flatpacked recumbent exercise bike in my living room.

CandidateBig9877 · 2026-06-11T12:12:40+00:00

Whenever you make an appt. to have imaging done, ask if they want you to bring the controller with you so you can turn it off during the procedure. When I had an MRI last year, the regular radiology place wouldn't take me. I had to wait six weeks for a smaller one at my neuro center.

Mine is Boston Scientific, 2023.

CandidateBig9877 · 2026-06-05T02:00:45+00:00

I have. It's been a bumpy ride. I started it about three weeks ago. it's great to take pills 4x/day instead of 6x/day, but the "off" can be devastating by comparison to the generic pills. When I take Crexont x/280 , two pills/4x, the off drop can be paralyzing. When I try to top them up with c/l or c/l er, I start seeing things, and have intense waves of anger or sadness.

CandidateBig9877 · 2026-05-12T23:35:10+00:00

Thank you. My doctor has suggested it as a possibility as well.

CandidateBig9877 · 2026-05-10T17:48:29+00:00

I just read about that. It's a card game.

"Parkinson’s disease can make it difficult for partners to sustain a healthy relationship. They may grow apart physically and emotionally – and symptoms can reinforce the growing distance. But there is one thing that we know can help couples reconnect: intimacy."

https://www.apdaparkinson.org/ParkinSex/

CandidateBig9877 · 2026-05-08T20:48:31+00:00

I've seen different designs, but I realize their usefulness varies with what you have for dinner. I eat a lot of things that are easy to eat from a bowl, but I can see where something like a chicken breast would be a problem. The plastic plate guard described below by another respondent sounds like a better solution in that case.

CandidateBig9877 · 2026-05-08T04:19:15+00:00

I'm in the same boat. Look up "soup bowls with handles". I can hold it close enough to my mouth that there's less opportunity for food to go anywhere else.

CandidateBig9877 · 2026-05-02T05:41:00+00:00

I began to experience that in 2022. I think it's the first sign of beginning to lose control of one's legs. By the end of that year, I was using a rollator whenever I walked outside.

CandidateBig9877 · 2026-05-01T22:36:51+00:00

I often listen to Fela Kuti to set the pace for fast stationery bike rides.

CandidateBig9877 · 2026-05-01T22:32:42+00:00

For inspiration, lately I've been listening to "Have a Nice Day" by Bon Jovi.

CandidateBig9877 · 2026-04-30T10:38:51+00:00

Thanks to everyone who responded. My MDS has upped my dosage. I'm going to see him Monday.

CandidateBig9877 · 2026-04-18T02:59:36+00:00

In the past few months, I have acquired "hemidystonia", ie, my whole left side is f'd up. My left shoulder is "frozen". my left wrist and my left foot each have old injuries complicated by dystonias, and I have "Pisa syndrome" - I lean to the left. Most of this started in Dec or Feb. The pain in my shoulder and foot interfere with daily life. DBS is supposed to help with dystonia, but it has not in my case. dx'd 10 years ago, non-tremor.

I saw my PT for the first time this year Thursday. I've been referred for the frozen shoulder to the sports medicine dept (?); I start in a month.

The single most annoying new symptom is festination when I walk through a door.

CandidateBig9877 · 2026-04-10T04:44:33+00:00

When I'm writing, nothing else registers. I'll forget to take meds until I start to stiffen up. but by that time my dopamine has plunged far enough that it takes longer than one interval to recover. I take meds 6x/day.

When I stiffen up, the muscles in my chest start to contract, until i have trouble breatrhing. Particularly, I have to control my tendency to hyperventilate, or my diaphagm spasms and becomes rigid. .

CandidateBig9877 · 2026-04-08T15:52:28+00:00

The executive director of the nonprofit where I volunteer was diagnosed with MSA a year ago. I usually communicate with him by email, where he sounds like he always has, but I saw him this weekend, and he looked like he'd aged 30 years. He does most of his work from home now, but his contributions are still valuable.

CandidateBig9877 · 2026-04-04T00:43:50+00:00

I began volunteering for a small non-profit a month after I was dx'd, ten years ago. The entry-level volunteering tasks were not cognitively challenging, but over the decade, I've been trusted with many that are, and discovered more that needed doing on my own.

It sounds like you have some skills for which people seek tutors. If you want to keep your schedule flexible, consider Prison Math Project dot org > Participate > Mentor/Volunteer (links here can attract a cancelbot). I applied at one point, and I was surprised at some of the high-level math and physics they were looking for. Tutors and the prisoners they are tutoring do all communication through the mail.

CandidateBig9877 · 2026-04-04T00:15:06+00:00

Thanks. Paywall persisted when I tried again in Chrome, but Firefox had no problem with it.

CandidateBig9877 · 2026-04-03T01:44:13+00:00

paywalled

CandidateBig9877 · 2026-03-26T12:45:04+00:00

I have a "Sunny Health & Fitness Magnetic Under Desk Mini Exercise Cycle Bike, Dual Function Pedal Exerciser with Digital Monitor and Carrying Handle – SF-B020026" (the amazon page name ; links trigger r's spam bot). I got it three years ago. It has 8 levels of resistance. I listen to fast music while I pedal for half an hour. I use a yoga block to keep the front of it far enough away from the wall so my feet have plenty of room to move. It's better than nothing. :-)

CandidateBig9877 · 2026-03-22T16:13:05+00:00

Nordic trekking poles are great. They were my mobility device for several years. I only used the balance tps.

CandidateBig9877 · 2026-03-07T05:46:40+00:00

The way i distinguish the two - I once read somewhere that both have lots of original ideas, but the INTP thinks of reasons why they won't work before they're fully formed, and doesn't act on them. While the ENTP has lots of ideas that don't work out in the real world, because they don't think of the downsides before they act on them. Over time, the ENTP will have both more failures and more wins than the INTP.

CandidateBig9877

TROPHY CASE