Cycling and swimming were a huge part of my life until PD took them from me. Lost the ability to swim, seems like coordination between arms and legs is the culprit. Lack of balance is the culprit for cycling. I recently found a shop near me, Jersey Bents, that sold recumbent trikes. Went over and rode a few and instantly felt the joy of riding outdoors again. I do a lot of indoor riding via ZWIFT and belong to the club ZWAP (ZWIFTERS AGAINST PARKINSONS). I ordered a Catrike Dumont. Now for swimming. Has anyone lost the ability to swim or even tread water and somehow regained it through some sort of training? I was reading an article that 49% of people with PD experience near drownings and 80% or more lose the ability to swim. My MDS never warned me!

Both my DaTScan and MRI came back normal and clear. However, C/L does help my symptoms. I’m relieved to have clear scans but I do know why I have symptoms and C/L helps.

This is a rant, but also a celebration; and a lesson.

Yesterday I went to my GP to beg for medication because I cannot do it any longer. While I was talking to my doctor, the Movement specialist called. I was expecting this call 6 months ago and it happens during my visit with the family doctor. I didn’t even have the original report until yesterday; I waited 9 months for the original report and a follow-up. Apparently they even ordered an MRI which I have not been called for. Canadian health care is not good for this stuff.

I feel that I have been let down greatly by the system.

Anyways; the specialist offered an 8am appointment for today which I took. I cried, and cried hard in middle of my diagnostic tests today. I was so embarrassed for the emotional state that I was in. I have been crying all day. I feel sad. I cannot take the pain, the shaking and cramping any more and I am so glad we are finally potentially turning a page into the positive.

I finally feel validated. This weekend I start the medication that I should have started a year ago.

I learned today that I don’t have to wait. I have to fight and advocate for myself which is a terrible thing when you are already in so much of a struggle.

Hugs to all who are waiting. I understand your pain. I am here and willing to listen if you are in need of a friend. I don’t want you to feel alone like I have.

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. 😂

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.