r/youngparkinson

I was diagnosed with PD in February of this year following a mounting cascade of symptoms that I suspected early on were neurological in nature (olfactory disturbances [~10 years ago] → left shoulder pain [3 y.a.] → frozen shoulder [2.5 y.a.] → reduced arm swing [2 y.a] → occasional action tremor [1.75 y.a] → gait dysfunction [1.5 y.a.]).

The gait issues started as a limp and a weird stiff, achy feeling that would move around my lower body. Then came the hard-to-describe sense of my brain not communicating with my legs, like I had just borrowed this body and hadn't fully learned to use it. I started taking levodopa (as Madopar) in April of this year. Around that time I started experiencing a frequent and profound sense of weakness and heaviness in my legs, like you might get after a particularly intense leg day at the gym. Walking has become much more effortful, both physically and mentally. Naturally, I am concerned to see this level of dysfunction develop in a relatively short amount of time.

However, I have observed a few things that I think are interesting:

1. Despite the feeling of weakness, my actual, measurable leg strength is not diminished. (This has also been observed in other people with PD [1].)
2. The dysfunction tends to improve—sometimes by a little, sometimes by a lot—as I make my way through my treadmill routine, which is currently made up of alternating intervals at 4.5 and 6.5 km/h at a two percent grade.
3. The dysfunction appears to be limited to "vanilla" walking on flat terrain:
   • Walking up or down stairs (a constrained problem) remains easy. Going from stairs to flat terrain sometimes temporarily improves my flat-terrain walking.
   • Walking backward is easier than walking forward, and I don't get that sense of weakness or heaviness.
   • If I transition to a jogging gait, the dysfunction and weakness immediately disappear.
   • If I put a little "swagger" in my step—a little bounce or other physical exaggeration—the dysfunction and weakness immediately disappear, even at my "vanilla" walking speed. The dysfunction reappears as soon as I resume my default walking gait.

As a cognitive scientist, I find these observations fascinating for what they suggest may be happening in the brain. As a person with PD, I find them encouraging for letting me know that not everything I am experiencing is a clear sign of ineluctable decline.

[1] Alonso-Juarez, M., Fekete, R., & Baizabal-Carvallo, J. F. (2022). Objective and self-perceived lower limb weakness in Parkinson’s disease. Therapeutic advances in neurological disorders, 15, 17562864221136903

Original post https://www.reddit.com/r/Parkinsons/s/rWEKpeFHQB

On June 1st I set a goal to workout every day in June for 🏳️‍🌈Pride month. As a gay man living with Parkinson’s disease, I wanted to challenge myself to put real effort into my own health. I needed a reason to show up. Pride month was that reason.

Today is day 30 and I finished my Pride month goal strong and learned some stuff about myself.

What I learned:
I can only push hard for 4-5 days before I need a lighter day for stretching and slower movements. My body has a rhythm and I can’t override it with willpower.

At 55 and about 6 years into this diagnosis I can still battle it. I can still build muscle and I can push some symptoms off.

My Parkinson’s symptoms improved enough to
Be noticeable to those immediately around me.

The dystonia I deal with frequently happens less often.
The Parkinson’s tremors have reduced bit.
The muscle stiffness that feels like rusted joints doesn’t feel so “rusty” as often.

The most important (for me) improvement is my walking gait and posture. I feel that sway again in my body as I walk. You know the one where your torso and shoulder sway opposite your hips and legs to balance you? Well that is one of the first things that Parkinson’s took away from me and now I’m feeling that back a little. Now I somewhat walk with my whole body again and it feels delightful.

Music Playing in the AirPods while exercising changes everything. Since my brain can’t always keep my muscles working in a good rhythm, music can sometimes, actually a lot of the time for me, pick up a lot of the slack and keeps the rhyth going.

Heavier music pushed me for more reps and heavier weight. (Metallica, Linkin Park), Faster dance beats gave me endurance for longer sessions. (Madonna, Donna Summer) but playing music that I loved,not just to hit a bpm, was better than anything. I think my brain recognizes the beat and just knows how to keep that beat from habit.

And it felt great to go to the NYC pride parade two days ago.

I know I can’t cure my Parkinson’s. But I can work hard to reduce its severity and give myself some extra years of mobility and movement. That’s what I wanted to do with these thirty days, to know that I can do it.

I hope you all have your own reason to show up, whatever that looks like for you. 🏳️‍🌈Pride month was mine.

Love you all

❤️🧡💛💚💙💜
🏳️‍🌈 #pride #prideinyourself

I haven't seen many posts about Parkinson's disease and going through a divorce. Hopefully nobody has to go through that, but I'm in a marriage where I've had problems for a while and after being diagnosed with Parkinson's for a few years, I'm realizing that the constant stress of this bad marriage is going to make things worse. I'm concerned about how long I can work, financial stability, the stress of divorce on my kids, etc.

Has anybody gone through a divorce while living with Parkinson's? If so, how did it go and what advice would you give?

Do anyone knows about WOLF PARKINSON disease?

36M. Father has Parkinson’s disease diagnosed at age 60.

I started having severe RLS around age 25 (I think more around 23). Now in my 30s it’s more nights than not, almost every night, and it’s not just my legs but specifically and more frequently my left body becomes what I “think” is dystonia but I cannot entirely explain what happens. It shifts between a “locking up” feeling to very quick jolts like electric shocks which cause a mix of involuntary movements and a voluntary urge to move to get rid of the discomfort. When it gets bad, I feel it in my left arm, shoulders, neck and my eyes as well. Happens mostly at night but every once in awhile it happens anytime I am at rest, laying down, car rides, flights, any time of day. As for legs, my father actually said it this way, “like a thousand mice trying to escape your legs?”, he said it was one of his first symptoms. I learned this from him about a month ago. That’s definitely one way to put it for me too. During the day my left hand sometimes starts to stiffen up, or lock up, as well. Around 28 I started having a lesser sense of smell. and difficulty emptying bladder also especially at night. Also have morning stiffness ever since I was a teen. My night vision is also really bad but I don’t know if that’s related or not however my father is also now in entirely blind at 65, so with this full picture, a genetic factor here seems very possible to me.

Does ANYONE have similar symptoms to this? I’m getting a parkin genetic panel soon but struggling with getting insurance to cover it. My neurologist just started me on carbidopa/levodopa at night and so far it’s helping A LOT. Before this I had tried Requip/Mirapex (cognitive dysfunction side effects, can’t think or drive during the day when I take it at night, minimal relief) and gapapentin/pregabalin (only made me feel dumber the more I took it, nearly no relief).

Labs are all normal, iron/ferritin/B vitamins, normal MRI, normal EMG I asked neurologist about getting a DaTscan next but they said it could “muddy the picture” of what it actually is, not sure what that even means, didn’t think to ask at the time. Maybe because they think it could be PD but don’t want to have to tell me at a young age. Don’t know. But the whole point is I WANT to know. They did however agree to ordering the genetic panel.

All this said, from my recent talking about these issues with AI models, they are leaning into “young-onset dystonia-dominant parkinsonism”, more specifically a PARK2 or GCH1 inherited mutation causing a dopamine system dysfunction, but I’d really like to get some opinions here too, thanks.

For those who have had dbs , what does it actually feel like? Is there any physical or present feeling, like in the head or mind? When its on/sending electric power, is there a sensation that you can feel/sense?

Hello,

I hope you and your family are doing well.

I was recently diagnosed with Young-Onset Parkinson’s Disease (YOPD), a rare form of Parkinson’s that affects only about 5–10% of patients. The diagnosis changed my life and inspired me to write a deeply personal book, Before the Tremor.

This book is my honest, unfiltered story—the fears, struggles, lessons, and realities of living with YOPD. Writing it was one of the most emotional and challenging things I’ve ever done, but I believe it can help raise awareness, provide hope, and create understanding.

If you're able, I would be grateful for your support by purchasing a copy and leaving a review. Every purchase helps spread awareness and supports this mission.

Thank you for being part of this journey.

Purchase here:

https://amazon.com/dp/B0GX15V3F1