r/Parkinsons

So, my daughter and I went to a very loud stadium show with pounding drums, thunderous bass, and lots of flashing lights. Plus, there were several points where the star of the show encouraged everyone to scream as loud as they could, and jump up and down, literally rocking the entire place. I loved it. It was a transcendent experience BUT...

About 2/3 way through, I noticed myself getting noticeably worse symptom wise (tremors, neck "stiffness" -- that word really doesn't describe it, balance problems). Was it the stimuli? Fatigue? Both? The concert was my first experience like this since being diagnosed about 2 years ago. Anyone else have this kind of reaction in that kind of situation?

Curious what everyone has arrived at as their favorite exercise routine(s) for the week. Do you strength train and do cardio on the same days or break it up? Have you found a particular type of exercise to be especially helpful?

I've talked about this on here before that starting lap swimming was a game changer, really improved my posture which helped substantially with my gait issues even during off time. Running seems to help my mood the most, but I don't actual enjoy the run itself.

I'm still building a strength training routine, not sure what I like best in this arena yet.

I would love to hear what everyone else has arrived at as their exercise favorites and how you keep things interesting over time.

My 70-year-old husband had a mental health crisis, and our son and I took him to ER where he was under observation for several days, then attended a partial discharge program at the hospital from 8:30-3:30 every day. His depression meds were changed and he was no longer paranoid and delusional. But the psychiatrist met with both of us and told us that based on family history and mild memory issues, that he has Parkinson's Dementia even though he has no tremors or gait issues. There is about a 6-month wait to see a neurologist. I can't seem to find information about this particular type of Parkinson's. The doctor explained that it's the same disease but attack a different area of the brain. His main symptoms are that he doesn't want to go anywhere or do anything. He will go back to bed or sit on the couch doing nothing, doesn't read or listen to music or go on walks like he used to. After his discharge, we had an appointment with a PA in his PCP's office, but all they did was refer us to a neurologist.

Past experience tells me I should lead with this: I'm not seeking advice (thus, not flaired with "Questions/Advice") just asking if this is typical. I know, I know, everyone is different. Having said that: About 4 or 5 pm of a work day I feel like I could fall asleep in my Archie Bunker chair. I probably shouldn't sit in a recliner then, but...I think I could go to bed w/o dinner & just fall asleep if I let myself. Now, at my age 58F, I play that fun game of: Is this PD? Or menopause? Or just old age? (Or am I sick!?) Doesn't help that aforementioned work day is teaching 2nd grade. Isn't fatigue a symptom of PD? I read that your body gets tired due to all the movements, but I have very minimal physical symptoms--no tremors, just slow moving w/o meds & occasional (usual night time) mild spasms so...? Anyone with me? Just asking coz you're the only people with PD that I know!! (Have not "come out" yet IRL) THANKS!

Hello all ❤️ I wanted to come back and make an updated post since I originally made one about 3 months into starting the Vyalev pump. At that point I was still very much adjusting and thought I had a decent handle on things 😅 Today marks exactly 10 months on Vyalev for me (started August 12th, now it’s May 13th), and WOW have I learned a lot since that first post. Some of it good, some of it absolutely the hard way 🙃 I wanted to make this updated post for anyone considering the pump, newly starting it, or currently struggling and wondering if what they’re experiencing is normal.

As always, I’m not a doctor and every patient is different. This is just my personal experience as a young onset Parkinson’s patient.

For those who didn’t see my original post, I have young onset Parkinson’s and was diagnosed at 23, though symptoms started much younger and were dismissed for years. My biggest issue has always been dystonia, especially in my left foot, along with severe OFF periods, cognitive slowing, anxiety, and horrible nighttime symptoms. Before Vyalev I was on Sinemet, Rytary, and Inbrija rescue. My life revolved around medication timing, watching the clock, planning everything around when meds kicked in and when they’d wear off.

But the biggest thing? My OFF periods before Vyalev were absolutely terrifying. I wasn’t just uncomfortable, I was often completely laid up on the couch unable to function while dystonia took over and panic attacks hit HARD. And I don’t mean mild anxiety, I mean full blown “I think I need medical attention” panic attacks. Chest tightness, racing heart, feeling like something catastrophic was happening. I frequently had to call my best friend to come over or stay on the phone with me to talk me through it so I didn’t panic and call 911. That’s how severe it was.

One of the biggest benefits of Vyalev for me is that while I STILL have OFF periods, they are generally nowhere near that level. For the most part now, when I go OFF, I can still walk around, function in a limited capacity, and ride it out. It still sucks, but it usually doesn’t feel like a full body medical emergency anymore, and that alone has significantly improved my quality of life.

Now for the honest 10 month update 😅

THE GOOD ❤️

• Sleep. This alone was life changing. Before the pump I was waking every couple hours needing meds. Nighttime was awful. Now my sleep is significantly better. Not perfect, but MUCH better.

• Less catastrophic OFF periods. Still have them? Yes. But they are usually way less severe than oral meds were for me, and I can often still function instead of being completely taken out.

• Way less dopamine crash panic attacks. Before Vyalev, OFF periods and panic attacks were basically in a toxic relationship 😅 I still have anxiety, but those severe dopamine crash panic episodes are MUCH less common.

• Not living by the med clock anymore. If you know, you know. Constantly calculating doses, wondering when meds would kick in, praying you timed things right. That part is so much better.

• More ON time overall. Even with the issues I’ll mention below, I absolutely have more functional time than I did before.

NOW THE HARD TRUTH 🫠

Because I really wish someone had explained this part better.

• The pump can make you WAY more sensitive/reactive. This has honestly been one of the hardest emotional adjustments. Before Vyalev, I could have caffeine, drink a Red Bull, deal with normal life stressors without my nervous system immediately choosing violence 😅 Now? Stress, excitement, poor sleep, dehydration, illness, emotional upset, caffeine, rescue meds, and sometimes apparently just existing 🙃 can all mess with me. I feel WAY more touchy/reactive than I ever did on oral meds.

• Your therapeutic window can become TINY. For me, slightly too low = OFF/dystonia/feeling awful. Slightly too high = dyskinesia. There’s very little room in between some days.

• Dyskinesia can be brutal. I had dyskinesia before, but pump dyskinesia feels different. More aggressive, easier to trigger, harder to interpret. Sometimes what feels like needing more dopamine is actually me being too high.

• Site issues are their own nightmare. I’ve dealt with cellulitis, painful irritated sites, inflammation, bad absorption, and certain areas becoming unusable. Sometimes it isn’t your settings, sometimes your site just sucks 😑

• Absorption inconsistency will make you question your sanity. Same settings, different site, completely different response.

• Ferritin/overall health matters WAY more than I realized. When my ferritin dropped, everything got worse. More OFF periods, poorer response, more rescue med use, less stability. Not every worsening symptom means the pump stopped working.

• Rescue meds may still absolutely be part of life. I originally hoped the pump would eliminate my need for rescue meds. Nope 😅 I still use Inbrija because for me it works faster than the bolus.

• Stress matters WAY more than I realized. Stress can trigger dyskinesia, worsen OFF periods, make meds feel ineffective, and make your whole body chaotic.

• The actual pump/device itself has its own frustrations. It’s bulky and annoying, though not unbearable. The tubing is awkwardly long for no reason and just hangs off your side. The pump itself can be surprisingly loud when administering meds depending on how quiet your environment is, and the alarms are absolutely obnoxious 😅 The battery lasts about 3–4 days in my experience.

I also had an issue with my first pump where it kept alarming saying the battery had popped out when it hadn’t. I’d have to physically remove the battery and reinsert it to make it stop. Also, changing the syringe and restarting the pump only takes maybe 2 minutes, BUT that’s also just enough time to get distracted if you’re a busy human 😅 More than once I forgot to answer the prompt to resume medication, which resulted in me unknowingly being OFF for HOURS and going into a severe dopamine crash. Since exchanging that pump through my pharmacy, I haven’t had that issue again. They were honestly amazing and overnighted a replacement immediately with a prepaid return box for the old one. This may not happen to everyone, but it happened to me and it’s definitely something worth being aware of.

• The social/body image side of this deserves mention too. I’m 31. I’m basically in my prime and I want to wear tank tops, shorts, rompers, dresses, cute summer outfits, and just exist without looking like a walking medical device 😅 The pump is worn in a fanny pack, which definitely limits outfit choices and draws attention. In the colder months it’s easier to hide under hoodies/sweatshirts/coats. Summer? Not so much. This pump absolutely screams “I have medical issues” and that has honestly been a source of social anxiety for me. I’ve heard through my nurse ambassador that a redesigned version is apparently in the works over the next few years, and I genuinely hope it’s significantly smaller… ideally tubeless because this ridiculously long tubing is honestly unnecessary 🙃

• The treatment burden is real. Being attached to something 24/7, supplies, alarms, site changes, skin irritation, troubleshooting…it gets exhausting.

SO… WAS IT WORTH IT?

Honestly? For me, yes. But not in the magical miracle cure way I imagined. It is NOT easy. It is NOT perfect. It is NOT set it and forget it. But compared to where I was before, it has given me better sleep, way less catastrophic OFF periods, fewer severe dopamine crash panic attacks, more ON time, and more functionality.

At the cost of dyskinesia management, hypersensitivity/reactivity, site issues, infections, troubleshooting, and unpredictability.

Ten months in and I’m still learning. If you’re struggling right now, please know you are not failing. This treatment has a STEEP learning curve.

If anyone has questions feel free to ask ❤️ I’ll always answer based on my personal experience if I can

I (60M) have had tremors in my right hand for about 15 years, but recently,and usually when I’m tired, I have noticed some very slight movement in my left hand that reminds me of the earliest days pre-diagnosis when I felt flutters in my right hand. I am quite nervous that I will end up with tremors in both hands. How many of us have tremors in both hands? How do you deal with it?

TL;DR — What you need to know:

✅ AI designed a drug that improved motor function in PD mouse models

✅ It crosses the blood-brain barrier

✅ FDA cleared for human trials Jan 2026

✅ First anti-neuroinflammation drug to reach this stage in PD

❌ Not proven in humans yet

❌ Phase II in PD patients still needed

I believe that amongst Parkinson’s patients, as with any disease, there are people who have found tricks and quiet breakthroughs that have made a huge impact. If you or someone you know has been managing Parkinson’s long term without significant disease progression, I want to learn about your methods and your secret tips, tricks, and treatments. If it’s something you don’t feel comfortable posting publicly please send me a message. I will then conduct research on anything shared here and determine what is a good fit. My mother has Parkinson’s and I want to stop her condition from progressing. Thanks.

The ONE common thread when researching PD is that patients MUST exercise if you have any hope of coping with symptoms. So, after the initial shock of the diagnosis, I started doing so full speed ahead. But two things are bugging the heck out of me: 1) I'm 99 percent sure I'm NOT exercising (I run/walk/run & elliptical) at the recommended 80-85% heart rate AND 2) When I don't exercise at all some days due to fatigue and/or apathy I feel VERY guilty, like I'm not fulfilling my required treatment. Not looking for advice, as I know the solution is: JUST DO IT, I guess I'm looking for commiseration ,,, does anyone else feel like this sometimes? TIA!

My dad lives in Louisiana. I have been trying for WEEKS to get him approved for Vyalev, which we have every reason to believe he would benefit from. Just found out today that Medicare will only approve it under part B, meaning that my dad will be on the hook for 20% of the cost. The average annual cost of this medicine: $60k+, making his annual cost around $12,600. My dad was a newspaper reporter and a college professor. This is way out of our financial capabilities.

I feel really defeated that, after all this fighting and battling with doctors and insurance and pharma reps and PBMs and Medicare regulations, it just turns out that we can’t afford it anyway. And I’m mad that my father’s quality of life is suffering because the things he needs are for the wealthy and not for us.

I know there’s some programs that can provide special funds and the company who makes the med will pay for it IF! you apply for, and are denied by, 4 other places. It’s just like…damnit, man.

Thanks for listening. Keep fighting.

While I'm quite impressed at how well DBS has worked on my symptoms, the skull disfigurement bothers me. In a limited and appropriate way.

I used to shave my head due to male pattern baldness giving me a bad look. I've let it grow out since the first procedure 6 weeks ago and worn a bandana do-rag for the time being. Underneath, the sides and back look ok but the top of my head- and the probe cover's "bump" feature- have about 3/4" of hair that's just little bits like weeds, not a lawn. It's not vanity, I'm not defined by my hair, sure. But, objectively, it looks pretty bad and I don't like it.

The incision was extremely well sutured and healed up well- great job, but I'm gonna call the resulting bump "disfigurement" of the skull.

And I'm not sure how easily and evenly this would shave around the probe cover- and also I did unilateral, and they left the unused wire under the skin on the other side- while smaller, it has steeper edges and sounds even harder to shave into evenly.

I imagine even electric clippers have a risk of nicking skin, and I have black hair and white skin. Any area I can't shave as closely will appear darker, I might even end up making a darker ring around the probe cover that makes it MORE obvious.

I thought a bit about hair transplants. I'd thought about that even before DBS. They're kind of expensive, and not covered by insurance. BUT, I kept thinking and realized this may actually be a boon- could I call it reconstructive surgery, and thus covered?

Bounced that off Claude AI with my specific insurance carrier and policy type, and this might actually qualify me for coverage that I would not have before. Maybe. If we call it "reconstructive surgery" to fix DBS scars (that's pretty accurate, actually) that might work. But the policy language could be read that the alopecia (balding) itself must be caused by the trauma, and DBS surgery didn't cause baldness.

I messaged my neurosurgeon's office if there was any "letter of medical necessity" or something like that we could try. They'd probably know more.

Anybody pursue such a thing before?

I recently lost my Dad to parkinson's, he was diagnosed in 2018. Eventually he was worn down by recurrent aspiration pneumonia.

In the beginning of his disease I started to compile some research on the disease, I have a science background but am not a doctor. Please consult with your physican/neurologist.

I wanted to structure this more like a literature review but lost steam at some point, but wanted to get it out there in case it can help anyone.

Hey everyone, I was diagnosed with Parkinson's back in August and I'm really struggling with sleep. I've always had trouble sleeping, but it's gotten so much worse since the diagnosis. I wake up multiple times every night and I'm exhausted all the time.

I tried trazodone without any real improvement, and my doctor switched me to sertraline about a month ago, but it hasn't really helped yet either. I'm wondering if anyone else here has dealt with insomnia or depression related to Parkinson's, and if so, what actually helped? Any tips, medication recommendations, or just hearing that others have been through this would mean a lot. Thanks in advance.

Has anyone got any good ideas of how to prevent this from happening? He won’t use a bib and Mom tries hard to help him keep his dignity. Just hard overall.

Has anyone here had the Syn one biopsy come up negative but still have Parkinson’s? I have the movement symptoms, jerking, pain, freezing in place, and this weird sort of feeling where I disappear into myself and can’t do anything but make some noise, as well inability to speak or sometimes sounding like I’m a deaf person talking. I was put on Levodopa and it’s working amazingly. I still have little things that show up like the occasional pain or disappearing but mostly fantastic. I missed a dose and it all hit me like a freight train. My neurologist office is being a bit coy and saying it’s Parkinsonism and not PD but this really acts like PD.

Hi everyone,

I am a 19 year old filmmaker and I recently finished a short film titled EPILOGUE about a painter who discovers he has Parkinson's and can no longer paint due to his trembling hands.

I made this film as a tribute to my grandfather who passed away from Parkinson's a few years ago. This was my way of processing that loss and trying to honor what people living with this disease go through.

The synopsis is this: Christopher was once a prominent painter, but for years the artist has vanished from the public scene. He now lives a solitary life with his only remaining joy: painting. Until one day, his hands begin to tremble.

This 5min short film is not here to be negative, instead, I am trying to give hope. Before the official release, I would love to get some feedback from this community. Does the portrayal feel honest and respectful? Is there anything that feels off or that I should reconsider before the release ?

Thank you for watching, it means a lot.

Diagnosed with Parkinson's over A year ago. Looking back, I have had early symptoms for quite a few years.

The meds I take are Levodopa/Carbidopa.

They have no effect, in fact they seem to make things worse as far as having any energy and the general way that I feel. The only time I really have tremors is when I extend my arm to reach for something or to do a function.

I currently have quit taking my meds altogether.

I thought I would ask here before contacting my neurologist.

Has anyone else experienced this?

My handwriting seems to be ineligible . I can’t even make out what I wrote even the numbers are awkward number eight and number two. It seems like I’m going down hil every year. I was diagnosed in 2024 because my speech was slurring. Thinking back I might have Parkinson’s in my late 20s because I’m deteriorating fast now, does anyone have handwriting issue too?

Hi there. My dad has had PD since 2020 or earlier. He is really struggling with it now. He is a Christian, (baptist), and I'm wondering if anyone here has advice, resources, etc that would help him feel better through faith. It's really the only thing that seems to move him, so I feel this could be a solid avenue for comfort.

He specifically struggles with:

-Bodily decline: Not being able to physically do things he used to. He feels worthless if he's not doing hard manual labor. (He is a car mechanic and soon that will become impossible. He already has coworkers helping him lift tires/machinery)

-Emotional lows: The depression and anxiety really gets to him. He sometimes mentions he wishes he could c*mmit su*c*de.

-Overall loss of control: I think everyone here understands this one. Control/Choice regarding time, food, mind, body, etc is destroyed with PD :(

I hate this disease. Any and all advice is welcome, especially as it relates to Christian faith.