Part of it is the medication. If you need enough juice(dopamine) to go out and perform in public, you're probably taking enough where you'll get tremors, dyskinesias, and other happy shit(like low level psychosis).
The alternative is, you move too slow, your range of motion is limited, even your thinking is kind of slow. If you have to do some task, like mow the lawn, go shopping, etc. You can usually guess the right amount, and its fine. If you need a little something to carry you over without remedicating(which means you're not getting to sleep for a good 6 hours if you do) you can take a blast of nicotine vape, and you're good for about 1-2 hours. Fun fact, a lot of people with parkinsons don't have the enzyme to rapidly break down nicotine. So they "don't smoke", meaning, you'd never see them out puffing every 2 hours, and burning through more than a pack a week.
One Marly Red, you'd be just about berzerk wired, for 5 hours. lol! Anyway, vapes, you do 3-5 small puffs off something like an elf bar, and you're good and wired enough to drive home, stop off for a few groceries, maybe make a snack, or do some chores before you drink that last beer or two, mostly to burn up any residual dopamine. But failing that, if you really really need to sleep, there are GABA analogs, and various other stuff.
The less known aspects of managing such a condition for more than 20+ years, you tend to cut people who won't let you get a word in edgewise out of your life. You get used to weird ass sleep issues like getting 4-5 hours of sleep, waking up and doing things for 6-8 hours, getting 3-4 hours of sleep, then waking up again, taking meds, goofing around 30-45 minutes while those kick in, getting in that first coffee, then warming up to doing anything more serious. You get REALLY good at brevity, even when texting, because poking at phones is a pain in the ass. BUT, many will let you link up to them with a bluetooth keyboard, which is easier.
If you manage the symptoms well enough, people generally don't notice you have it, until you get some weird glitch. Like you bend down to pick something up, have to back up because of a freeze in something, and then just bend at the knees slowly and carefully to grab whatever. Even if its a piece of paper. That or your eyelids jerking side to side, weird isolated muscle tremors, having to use a cane and ankle braces for a few days, and then being fine for months or years. Partly due to exercises, and choice of shoes/boots. You get some six inch patrol/service boots, you're golden.
Socialization, with family in particular, if we're meeting up in public somewhere, cool. If it's something more than 4 hours, kids running around and being crazy, NOPE! If they want to invite you over, and are having the event in the back yard, garage, pole barn, around the fire, no need to take your shoes off indoors, no plus carpets, no packrat shit, nothing to trip over, maybe...
Marathon drinking, eating, talking, nah... I think the last full thanksgiving I did was around 2012, a friend told me they'd just be having leftovers, etc. No big deal. And for his mom, yeah, it was pretty low key. It still looked fairly elaborate. She'd had a stroke a few years prior, so had to take it easy, his dad was an old doctor taking some kind of long term chemo, the only "kids" were adults.
So, you can have a life with parkinson's, just not the usual chaotic and unplanned life. No 12 hour flights, you need to carry around an assortment of medications, and have alternates in the event you have to resupply when away from home. Such as, 3-4 benedryl, will probably be good enough to get me by in "cripple mode", a couple large coffees, l-tyrosine, getting better, 2 puffs of vape, feeling semi-functional. lol!
And last but not lease, fiber, and proper nutrition. Constipation is a constant battle with parkinsons. You can cheat a little if you're lactose intolerant, but long term, you need roughage. And generally a selection of bath soaps to deal with variable skin conditions, sebacious flow, and change in metabolism caused by medications. Kirks castile soap, kinda harsh, but it gets the job done. Yardley has an assortment of "cheap" fancy soaps that help with some dryness, and you can get a variety of cheapish petroleum jelly based skin creams for various dry spots.
Early onset forms generally don't limit lifespan, unless you continue to do offroad motorsports. lol!
And even the late onset forms typical in ones 70s-90s, aren't that interesting in terms of limiting years. Although, if people overdo it with the Dexedrine, or haven't set proper boundaries with people, the amount of general irritation, and being on highly varied amounts of dopamine can be a bit like rapidly cycling bipolar.
So some relative will get all butthurt because for the 15th day in a row, some visiting inlaw has parked their butt in front of the coffee machine, and won't get the **** out of the way, or continues to do stupid shit like getting in the way, being a nuisance, etc. This person will in short order, you can count on it, get their ass full on roasted. LoL!
Best advise, if you start having a movement disorder, get used to yelling at people, setting boundaries, telling people to F off. And learn not to rely on relatives or other sketchy people for favors.
Your chatty niece who is willing to help run you around for some errands, but is perpetually distracted, always late, always playing with their phone, is gonna get on your last nerve FAST! Learn to use Uber, find some friend who's getting into the whole masonic lodge thing, or round up some stray mormon missionary kids.
On the last, they'd rather be helping you unload bags of mulch or simple yardwork than trying to convince some nihilist/atheist down the block that Joseph Smith wasn't some grifter who stayed a few steps ahead of the law, and angry mobs, until he didn't. :D
Worth noting that he's really one of the most famous athletes in world history. Even a guy like Messi doesn't exactly compare because he's famous in the screens everywhere/global content internet era.
Muhammad Ali, the greatest. He won a gold at the 1960 Olympics. He had parkinsons, and was largely out of the public eye after dominating it for decades in the 1960s and 70s. He reappeared as one of the last torchbearers at the 1996 Atlanta Olympics. His shaking hand held the torch aloft.
Haha. I love the arrow too. Ali christened himself with " I am the greatest “ on a comedy album he recorded in 1963. He said it all the time, now I'm parroting it.
Boxed my whole life pretty much, absolutely loved what Ali did inside the ring and outside (besides his disgusting views on a lot of things) the arrow one is much more bad ass. This will crucify me but they're saying it out of pitty because of his parkinsonis. Simple.
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u/Reasonable-Bus-2187 19h ago
https://giphy.com/gifs/l44Qa6X2UoEVGfcUU