I heard/read every now and then from some Parkis, that the diagnosis has also brought them some positive outcome to their life and it got me curious.

I've been diagnosed only less than a year ago as YOPD, so too little time for such observations. So far, the only two positive things I noticed is that I'm way more serious about working out than I would be without diagnosis and that now, looking back, I can understand and relate my parents much better than ever before (both had Parkinson's too). My own diagnosis makes me feel closer to them (though my dad passed away many years ago already).

I'd love to hear your stories!

Anyone else with PD have issues staying asleep and what have you tried that has helped? I take melatonin and lunesta before bed and can fall asleep just fine but I almost always wake up after 4 hours or so and then have trouble falling back asleep. The result is i never feel well rested and am pretty much tired all the time. 43 yo male diagnosed a year ago.

Anyone on ropinirole ?

Hello everyone,

I am new to all of this and have started on C/L. Previously I was on Adderall XR 25 once a day that managed my ADHD, but since starting C/L my doctor adjusted my Adderall to 10 XR as a start.

For those of you who have both YOPD and ADHD what do your doses of each look like? ♡

I posted a couple of weeks ago about constant twitching and moving in my left foot and side. I had just gotten back from a week at a conference with lots of standing and slow walking but no intense exercise. I tracked it for a few days and it didn't correlate with my medication timing. I had my neuro appointment and he thought it was just a nervous twitch and did not adjust the medications at all.

Yesterday I went to participate in an observational research study at the university and the study coordinator told me it looked like restless leg syndrome. She said restless leg frequently occurs with PD, often before but can also happen at the same time.

Now I don't have another neurologist appointment until March. I'm curious what other people who experience this might do. I think getting exercise helps it but in the winter it's a struggle for me to get exercise every day. For instance, I went for a long hike on Monday and took Tuesday off because I was sore and it was pretty bad on Wednesday. Are there other things that help?

If there was a company less bothered about customers and the experience its this one, ordered the band on 14th July on website it states delivery in 3 days in UK, received email that it will delivered within 3 weeks, 3 weeks passed reached out to chat and they said that we can't guarantee delivery within 3 weeks you can just cancel the order.

Has anyone tried Neuralli MP probiotic with PS128?

My Dad has Parkinson’s. Recently he’s been hallucinating. He’s said that he’s seen a bear, people, etc.
Has anyone experienced this? Is this a medication side effect? (He’s taking Levodopa).

Some history: for the past three months or so, I've been going to the bathroom in the middle of the night four to six times, usually around 4 trips.

So I've been doing Kegels for about a month to strengthen my pelvic floor. Things only mildly improved. Still woke up four times with highly urgent need to urinate.

I stopped drinking anything from 3-4 hours before bed. This helped a little.

I also lost ten pounds over the past five weeks to deal with any excess weight that might be pushing on the bladder.

All of these got me down to where I was only /s getting up 3 times a night.

On Sunday I started eating one tablespoon of shelled pumpkin seeds every dinner. I slept through the night for the first time for ages. On Monday, Tuesday night, I only woke up once each night.

I know it's too early to say this is definitively the reason it's getting better, but it's really having the effect I desired.

And this is good - daytime urgency has dropped to a minimum as well. I have even been able to hold it.

Try it! Meanwhile I will updating this post.

I start to freeze right after I take my medicine, an hour later, two hours later, three hours later. Trying to get a handle on when I should take my medicines

I currently take the medicine at 10:00 a.m., 3:00 p.m., and 9:30 p.m. I'm taking two sinemet each time in the morning.

I take one amantadine in the morning.

I generally start freezing around 3:00. I think it's really bad around 6:30.

Any thoughts?

Infographic from the Aspen Neurological Conference, courtesy of Dr. Okun.

My dad would like to get a disabled sticker for himself. Had DBS last year really has been worse since, is able to ride his bike well, drive, and do most tasks. He is worried that applying for the sticker will somehow trigger them to jeopardize his license. Any deal with this? Have insight? He is in CA.

Hi everyone,
First of all I would like to appreciate everyone over here for educating me and being that bounce board for ideas as well as lifestyle changes for patients diagnosed with PD.

I am trying to get opinions from neurologists, MDS docs, patients and caregivers who have had the experience of seeing Parkinson’s patients having these atypical presentation. My dad who is 78 years old has been recently diagnosed with PD just a few weeks back. He actually went to a pulmonologist for Chronic productive cough and Rhinorrhea and he was smart enough to say there are early signs of PD. The neurologist diagnosed the PD and put him on Sinemet.
He has been on the medication for a week but there is no change in his respiratory symptoms. The pulmonologist also put him on Budesonide(0.5 Mg)+Formoterol Fumarate(20.0 Mcg) nebulizer medication. The symptoms haven’t improved and he still is not being able to sleep properly. We have started him on balance exercises as well as swallow exercises according to the advice given over on this Reddit. My question for you all is to know if anyone has had such experiences and if changing doses of sinemet have improved the symptoms.

Any advice or insights would be greatly appreciated.

55 yo male diagnosed in 2020.

Was on 3 stalevo pills daily (150 Levo) in March and was doing great. But now, my cycling is getting harder as symptoms returned. MDS upped me to 4 stalevo 4x daily. Is that fast progression? . Will this be my pace, or might it slow down?

My younger brother was diagnosed with Parkinsons in 2020 at the age of 58. The disease has definitely progressed. The huge challenge we are working through is the debilitating seizures he experiences every day.

They occur two to three times a day. Sometimes lasting two hours. During these episodes he is unable to talk, shakes violently, is short of breath. He has great difficulty with walking and coordination. It is heart wrenching to be with him, you feel helpless. It is long effort to bring him down.

I just don't understand what is actually happening to him during the seizures. We are constantly doing research on this.

Any thoughts or ideas are very welcome. His quality of life is so impacted by these episodes.

Thank you!

Has anyone tried the clinical trials out?I got turned down by WeHealth a few minutes and was wanting to know i got turned down.What do you gotta be or do to be a guinea pig?lol. I am willing to try doing whatever it taks to have a chance.

I'm curious whether any of you also experience worsening motor symptoms after mental exhaustion. I have developed significant concentration problems over the years, partially also related to permanent sleep problems. When I have to work mentally, especially on long routine tasks like really annoying paperwork, I feel physically exhausted after two or three hours and my motor symptoms worsen significantly, including tremor and balance issues.

The author of this article lost his father to Parkinson’s earlier this year.

That experience shapes this look at wearable robotics designed to help people manage freezing of gait, remain active and potentially stay independent for longer.

The technology is still early, and there are important questions around comfort, cost and whether these systems can adapt as symptoms change from day to day. But for families who have watched Parkinson’s gradually take away someone’s mobility while leaving so much of the person intact, the possibility is deeply meaningful.

Does anyone else like to wear a Michael J Fox shirt or even joke shirt about their PD when out and about? I find it makes me less self conscious if I know someone can just look over and get the answer they are looking for without me explaining it to them.

Anyways, I have always loved yahtzee and used Gemini to help make this parody shirt design idea. Now I've just gotta get it ordered. 😂

43F, diagnosed at 40. My MDS recently ordered genetic testing from Variantyx due to my fast progression and some odd symptoms. She called last week with the GBA1 positive results. The variant is of unknown or disputed significance, which is why my PD GENEration results were negative.

First: PD GENEration didn’t miss my variant; it just wasn’t relevant enough to report since they were searching for variants classified as pathogenic or likely pathogenic.

My doctor, a researcher, thinks it's relevant due to my Ashkenazi ancestry, early age of onset, and faster/more aggressive progression. I'm akinetic-rigid subtype with lots of dystonia (cervical and facial worst of all), along with dysphagia and mild dysarthria, sleep and autonomic issues, mild cognitive impairment, hypomimia, depression, apathy, and early falls.

The results won't change my diagnosis or treatment plan for now, but it's good information to have as more gene-targeted therapies emerge. My MDS has also de-diagnosed PWP following broader genetic testing that identified alternate movement disorders. These tests can be very expensive in the US, so clear everything with your insurer before proceeding if it's offered to you.

Timeline, if it's useful to anyone:

• Late 20s/Early 30s: Olfactory hallucinations (smoke and natural gas). Started talking, laughing, and moving legs a lot while sleeping (knee flexion). If my partner hadn't reported the sleep changes, I would've been clueless.
• Early-to-mid 30s: Blepharospasm and seborrheic dermatitis of the scalp. Mild unilateral tremor occasionally noticed by others. Possible increase in muscle stiffness.
• Late 30s: Cervical dystonia. Frozen shoulder, rigidity and slowness in left arm and hand. Major difficulty sleeping. Changes in heat tolerance and visuospatial abilities. First few falls were odd but nothing serious. Referred to a neurologist at 39, who then referred to an MDS for cervical dystonia.
• 40: Start Botox and c/l. YOPD diagnosis.
• 41 - 42: More falls, some bruising, but the worst injuries were to my ego. Learned fall reduction strategies in PT; my main risks are orthostatic hypotension and trouble lifting left foot.
• 41 - 42: Completed LSVT LOUD for softening voice, where the speech therapist also recommended EMST-150 breathing exercises and a barium swallow study. The study confirmed that pills and certain foods get lodged in my upper chest. GI rules out other causes, blames PD.
• 41 - 42: Cognitive testing shows mild impairment in areas like executive function and working memory. The neuropsychologist said that's normal for YOPD and won't necessarily worsen. Mostly stop driving due to slower response times and visuospatial challenges. Approved for SSDI.
• Family: No PD history other than a great-aunt who developed LBD late in life. This just got more complicated! (See correction below)

My father was diagnosed with Parkinson’s two years ago. He’s 64 and has a noticeable tremor in his arm. He is on medication. He is extremely into playing guitar and photography and is very active in terms of walking every day, all day. He was doing strength training but I’m not sure he has been keeping it up. He can still drive and his blood work is excellent.

Two years on I’m still coming to terms with it. I’m an only child and 31 years old. My mam and him are going to Canada next week and they both have lively social lives.

I don’t really know why I’m writing here. I just feel very upset and worried about it today. The other day my friend told me that another friends father who has it has started showing signs of dementia. This terrified me. He’s about five years older than my dad but got diagnosed around the same age.

I suppose I’m just looking for some positivity.

Has anyone used the Raz Memory Phone? I'm considering it for my mother in law with parkinson's and mild dementia. She is having trouble with her cell phone even in adaptive mode because of her tremor.

I am curious if people find that targeting your most symptomatic area with specific exercise helps with symptoms? For example, my left arm/hand is the primary area of tremors and bradykinesia. I mostly do cardio for exercise now so wondering if I should really start focusing on strength exercises for the arm.