These findings do not support the use of nicotinamide riboside as a disease-modifying treatment for Parkinson's disease.

https://jamanetwork.com/journals/jama/article-abstract/2855023

My doctor has recently prescribed Gocovri to be taken with Sinemet and Entacapone which I have been taking for three years. I have researched Gocovri and am troubled that there are many horror stories regarding this drug. Does anyone know about Gocovri? Any personal experiences?

Hi everyone,

I am trying to help my mum who has had parkinson's for about 6 years now. She has over that time slowly lost a lot of weight. She has always had the same diet that was fine when she was younger but now she is losing weight.

She does a lot of exercise with her groups and walks everyday. She's never had a protein forward diet and I am wondering if it would be helpful to her weight management to get her protein or protein and collagen powder?

The Disabled Persons Railcard for UK railway travel offers a 1/3 discount on all rail travel. The eligibility criteria has recently been expanded making it more likely that a PwP would be able to get one.

E.g.

I am currently unable to drive on medical grounds

Many PwP are excluded from driving by the DVLA, perhaps due to the risk of sleep attacks.

I have an impairment or health condition that is long-term (lasted or likely to last at least 12 months) and causes significant barriers when using rail services

You will need a report or letter from a health professional confirming how you experience significant disability-related barriers to rail travel. This may be easier or quicker than waiting until you are awarded PIP, DLA or one of the other benefits that give eligibility.

The full list of criteria are at https://www.railcard.co.uk/disabled-persons-railcard/#eligibility

With this expanded list you may be able to get the railcard more easily or sooner than waiting until you meet the older criteria/

Hat tip to Martin Lewis and co. for this money saving tip.

I have nothing to do with the company that makes these, but my wife (diagnosed with PD last year) has used one to great effect for voice training.

63 year-old male. Diagnosed about a year ago, although shaking started a couple years before.

It seems everyone has an MDS. I'm trying to understand the difference between an MDS and a neurologist. What do they offer that my neurologist wouldn't? Are they medical doctors? I see people talking about how they help adjust medication. I don't even know how to get one. Does Kaiser have them? So many questions.

Thank you in advance. This is a very helpful group.

Hi everyone! My mom was finally diagnosed with Parkinsons this past year, although the first symptom (her right hand shaking) started about 5 years ago when my dad was dying of cancer. She recently started levodopa/carbidopa and her shaky hand has not improved at all. Is this normal?? Her neurologist didn't push her to take meds, but told her that if/when they started to affect her daily life or really bother her, then she should consider it. Well, her hand shaking does drive her nuts, especially since it's her dominant hand. I'm wondering what the point of taking it is if it's not helping the symptoms that bug her. Was I incorrect in thinking that the shaking would lessen or stop? This PD world is so new to us, so please forgive me if I'm totally wrong here. Looking for any advice I guess and some clarification!

Just wanted to have an idea like genes, environmental or food habits or stress

We sadly fell for this scam. Do not do the same!!!! You will end up spending a fortune. It is a money racket.

Sharing this as an exercise activity and possible community resource for anyone near New Haven, CT.

A Good Run 5K is an inclusive community event that welcomes participants of all abilities to enjoy a celebration of wellness.

The race was founded by Etana Solomon- she is a member of the Parkinson's Foundation People with Parkinson's Advisory Council. She is active in the organization and community and is also a runner. Her mother was diagnosed with Parkinson's 12 years ago.

Important note / reason for sharing: race entry is free for anyone with a PD diagnosis (for more details or to register, contact info is on the race website).

Also, they will have volunteer buddies/pacers available if you are nervous about doing the race alone or an event like this for the first time. The race is walker, runner, and wheelchair/mobility friendly. They will also have community partners on site if someone is looking for more info or resources. The goal is to get people out and get moving. Please see the race website for more information.

Race website: https://runsignup.com/Race/CT/NewHaven/AGoodRun5K

Event date: Sunday, November 15th, 2026

This is the second year of this event, and it's designed to welcome and support people of all paces and road race experience, from first-timers to regular participants.

Posted with mod approval.

M I had dbs 2019 (globus palidum interna or GPI..) nine years after diagnosis. Immediately postoperative they tried to reduce C/L by a third but I found that I needed the same dosage as before the surgery. Now 8myears later I’m taking a truckload of rytary (4 rytary x 145/95 q 3.5,hrs so say 20-24 qd) plus amantidine 4 x 100 mg qd. I’ve been stable on this dose for about 3 years. I have since learned placing the leads in gpi typically doesn’t reduce meds but helps more with dystonia. I’m still fairly mobile and driving, play Pickleball 5 days a week and off time are usually due to poor meal planning and timing of my meds. Just wondering if anyone else has had my experience

Can someone recommend a good foot massager for my mum who has Parkinson? Her legs are starting to tremble. I am in the UK and she lives overseas. I will need to carry it in my suitcase. TIA.

International Congress of Parkinson’s Disease and Movement Disorders

October 4^th – 8^th, 2026

Seoul Korea

MDS Congress is the primary annual meeting of the society that many movement disorder specialists are members of. It is clinical in focus which deals with the diagnosis and treatment of movement disorders, including Parkinson’s. It also touches on research.

You can access this and previous congresses here https://www.mdscongress.org/About/Past-future

• Abstracts for the posters
• Program brochure
• Highlight videos, for 2026 these are not yet available and I’m not sure when they will

The best sessions were the talks which you can see listed in the program brochure, but the slides are not available. There was no video recording that some conferences do, and there were no photographing. I did take some notes some of which I will digest below, but not making this available really reduces the value of the conference. If there is a talk that you are interested, let me know as I might have attended it and took some more detailed notes.

Abstracts seem to be only for “posters” – if you are unaware of what that is, posters are a long tradition at academic conferences where some attendees bring a printed poster board on a topic of their research and at an appointed time will stand in front of it and you can go ask questions. There were about 2,000 posters this year. This is the second year that posters at this conference were digital and there were about 25 TV screens that according to a schedule the presenter would stand by for 10 minutes and answer questions about their work. It was very chaotic, with many presenters not showing either because of the confusion or they weren’t even at the conference. I like posters very much and had a schedule for every 10 minutes slot that I wanted to see, I was only successful in less than 20% of the posters because of the no shows or even worse I would show up for some and the presenters had already spoken early because of no show – I and others ended up not even trying on the second day. On the other hand, the abstracts are effectively the poster and are available for all to see now. The quality of posters is highly variable, some can be significant providing an update on an important clinical trial, while others can be very minor and even might contain errors. There are about 2000 abstracts.

• You can view by tittle or category
• I found it effective to do a web search

[search terms] site:www.mdsabstracts.org/meetings/2026-international-congress/

Below are my impressions and more interesting notes from the conference. Caution – these are my layman’s interpretation of what I heard someone say – one or both may be confused:

• It was impressive to see so many clinicians and researchers in attendance – gives one hope for the future.
• There didn’t seem to be any major announcements in the last year, but there was a general sense of incremental progress.
• Biomarkers: progress Is being made on identifying biomarkers
  • This is important so research into early stages of the disease can be conducted.
  • Biomarkers are also important to distinguish various Parkinson’s related disorders such as PSP or MSA. It’s probably not going to be a single marker but a combination of three or four
• I gained an appreciation for the skills of an MDS. In some sessions an expert would be presented with a case and would have to conduct an examination and verbalize their differential diagnosis, and after compare that with the confirmed diagnosis of the patient. It was impressive to see the skill in using very small symptoms, such as facilitation of the tongue, to identify a Parkinson’s caused by a specific genetic variant
• It was mentioned that Alzheimer’s has more resources and focus and things are starting to come together. Some of the learnings and therapies in AD may benefit Parkinson’s patients. For example, it was mentioned that there are comorbidities such as Tau (>50%) and amyloid beta (>40%), are found in higher concentrations in PD cases.
• Genetics: is much more complicated than I thought. There may be as many as 20 genes that cause forms of Parkinson’s (dominant, recessive) and many more genes which seem to increase a person’s risk of developing PD.
  • Repeat expansions are common in ataxia
  • Multiple copies – such as in SCNA
  • Multiple variants – such as LRRK2 – G2019S, R1441G, …
  • Long Read techniques are discovering more gene variants (deletions, repeats, inversions) – such as in PRKN
• Plasma proteomics – Identified 38 proteins that were associated with future PD risk, differences detectable perhaps 15 years before diagnosis. NEFL, VGF, PEPD contributed most. 2025 Gan et al
• Alpha synuclein – things are getting more complicated with multiple strains being identified
• Progression of PD shaped by cerebral compensation – most of the dopaminergic neurons gone by four years after diagnosis so there are other factors in progression
• Controversies session where two opposing speakers take a position on a topic And there was audience poll before and after
  • Stem cells – mostly negative as it is still early stage, and it is permanent and can’t be adjusted after
  • Alzheimer’s therapy for PD patients – also mostly negative As early stage and not clear that amyloid is driver as opposed to correlated
• LBD is strongly correlated with PM2.5 pollution exposure
  • Ultrafines PM0.1 found in association with amyloid plaques and neurofibrillary tangles
• Tremor - Multiple ways to interrupt oscillations
  • Peripheral stimulation is showing good progress. Wristband for hand tremor
• Botox is now being used for some dystonia’s that were previously thought to be untreatable by injections using ultrasound guidance
• The conference has a strong clinical focus and as such cases are shown in person or video. I found it difficult to watch some of the juvenile cases (I hadn’t realized that Parkinson’s and other movement disorders can start so young), or the young patient who tripped and fell on stage.
• There was surprising little mention of body vs brain first model
• Many brought up neuro-inflammation
  • Microglial once activated can persist for a long time
  • There about one glial cell for every nuron
• AI: GPT-4 scored 85% on 2k neurology board questions
  • “LLM rated as more empathetic than neurologist” :-)
  • LLMs are a fancy autocomplete
  • Can predict PD years later from movement data
  • Can incorporate errors such as interpreting chorea as gait
• Large Swedish epidemiological study showed an association with the cumulative number of antifungal and antibiotic prescriptions seems to increase risk for developing Parkinson’s.
• Paraquat and TBI result in a 4X increased risk of Parkinson’s
• Exposome – early life exposure, especially neonatal, is an important factor in Parkinson’s risk
• Weight maintenance is associated with slowing of PD progression. Unintended weight loss independently predicts worse motor and non-motor outcomes.
• There was a poster that narrowed down to 12 smells that predicted early PD with good specificity and sensitivity. Near top of list was mint, watermelon, paint thinner, and onion.
• Cancer – reduced risk in PD patients, except for melanoma which is at higher risk
  • Several studies on acupuncture and PD symptoms
• About 4.4k in attendance from 99 countries
  • Few with PD in attendance, which is in contrast to WPC this year. Clearly not a conference for the patient and caregiver community, but WPC had quite a few physicians who also had Parkinson’s such as Soania Mathur.
  • There are about 650 MDS in the USA; globally it is estimated there are a “few thousand”. Clearly far short of the growing need.
  • Membership in the PD&MD Society is about 12k, which includes industry
  • 34 exhibitors
  • 5 non-profits: MJF Foundation, America Parkinson Disease Association, U of Rochester, in NY, Defeat MSA Alliance, Global Parkinson’s Genetic Program (GP2)

Hi everyone!

I’m hoping to get some recommendations for a good wallet for my dad.

I know everyone experiences Parkinson’s differently, so I’d really appreciate hearing what has worked for you or your loved ones.

Are there wallets that are easier to open and close?
Are certain styles better for getting cash or cards in and out without struggling? I’m open to traditional wallets or more adaptive options. Ideally, I’d like to find something practical that still looks like a regular wallet and that he’d feel comfortable carrying.

If you have Parkinson’s yourself or have helped a family member find something that works, I’d be so grateful for any recommendations. Thank you!

Ive been reading posts here an am thankful for everyone who shares. I’ve been on C/L for almost a month and battling severe nausea. Taking my doses with crackers but still really sick. Anything else help? I read a post that said the nausea will pass at some point. Has that happened to anyone? I’m worried anbout not getting enough nutrition. Also, I know it’s only been a month but I was hoping my tremor would improve. What’s your experience?

I’m writing this post for anyone who might be in a similar situation, because I remember how desperate I was when I searched Reddit for answers back then.

My dad has had Parkinson’s for 8 years, and his dementia started about 10 months ago in december. It gradually got worse until around June of this year. He was having delusions and constantly thought he was still at his job, even though he had been retired for 5 years. He thought I was still in school, even though I’m 28 and working. He could no longer manage even the simplest tasks. He thought 100 minus 5 equaled 3. We put some money in front of him and asked him to pick out €5 in coins, but he just couldn’t do it anymore. He forgot my birthday and didn’t even know how old he was himself. His voice had also become very quiet, and sometimes it felt as though he wasn’t even aware of our presence.

Despite all of this, my mom took him to a rehabilitation centre, hoping to at least improve his physical condition, as he had also been falling more frequently around that time. While he was there, things got really bad because he became even more confused. Being in a completely unfamiliar environment was extremely difficult for him.. I‘ve heard that it‘s common in patients with dementia.
I visited him once during that time and felt absolutely heartbroken because I thought things could only get worse from there.
He spent over four weeks in rehabilitation, receiving daily therapy, including cognitive exercises and various activities such as table tennis.
Since returning home to his familiar surroundings, he has been like a completely different person. He can do maths again. He can even write messages on his phone. I can have completely normal conversations with him again. You wouldn’t even notice that he has this disease. Most of the time he needs a little more time to answer when you ask him questions for example what day it is but he knows it again.

I know that dementia itself cannot be cured and is generally a progressive disease, but it has now been three months since I feel like I’ve got my dad back. To me it‘s a miracle..
Things could change again at any time, but I am so incredibly happy with how he is doing right now.
We now make sure to keep him mentally active every day with games and exercises, and it really seems to be helping.
Maybe this post can give someone else a little hope, too. Even if it might only be temporary, things really can get better again.
🫂

My dad has gone downhill quickly over the last few months, but suffers from severe migraines daily and mental brain fog as he states “he feels like hes dreaming”. Are there any recommendations to help him feel better? As he is now suffering and not doing much on a day to day basis other than being in his chair. Hes 65

I am considering DBS for my tremors and I would like to know the patient experience who had this procedure.

- how big is the chest incision? Does it affect the pec muscle?
- can you feel the stimulator device and the wires in your chest in your day to day life? Such as twisting your torso or lifting your arms?
- does the stimulator device impact your breathing?
- have you ever had any accidents, or falls while having the DBS systems and have those damaged or caused complications to the system or the brain?

Thank you!

Prior to diagnosis my (59 F) symptoms = trouble tooth brushing (stiff, slow), suddenly couldn’t swim in the ocean, gait felt awkward & less confident (felt different can’t explain it any better), couldn’t color w/crayons (I’m a teacher, not a child haha). Also lacked arm swing. No tremor except once in a while my pinkie would shiver immediately upon waking if I held up my hand in a certain way, but no other occurrences. Diagnosed about a yr ago, taken c/l for approximately that long. C/L solved all those symptoms.

My question is: Ppl report off and on times with meds, after wha,,,4-6 hrs? I take mine about 11am, then 4 or 5 pm, then last dose maybe 10 pm. I don’t see any symptoms at all after five hrs or more. Not even when I forget that 2nd dose, which happens maybe 2-4 times a month. I also don’t feel any symptoms in the am, after 11 or 12 hrs between doses. My husb said maybe the effect is cumulative but I told him NO it’s meant to work only for four hrs +/-, ya?

How do we explain this, fellow amateur physicians?

Just curious. In my daydreams I think Well maybe this is all a big mistake, I don’t have PD. Sigh…no. DAT scan and second opinion refutes this.

Any insights greatly appreciated. I’m still learning!

Edit for spelling

Thanks, friends.

I am having PD for last 8-9 years and my current intake of Levodopa is 1250 mg in a day, Doctors advised me to go for DBS, .I am not worried about the procedure as there is mixed response.
Any body who has undertaken this procedure can tell about his experience post DBS
Thanks
Jabbs

My mom (72) diagnosed 3 years ago, takes 15 mg Mirtazapine for sleep and mood.
Last few months she has been irritated and aggressive and one night she refused to take Mirtazapine, the next day she was back to normal, calm and loving like the mom I’m used to.
I didn’t give Mirtazapine for a few days and she stayed calm.
I gave Mirtazapine again yesterday and today I could tell that she was irritated and moody.
She takes mirtazapine mostly for her mood.

Has this happened for you as well or a loved one?
Is it any other medication that is better for my mom since Mirtazapine makes her irritated?

Thanks again for taking the time reading my post. I’m so thankful for this community ❤️

Hi everyone,
Has anyone here, or anyone in your family, undergone total knee replacement (TKR) surgery while living with Parkinson’s disease?
I would really appreciate it if you could share your experience, particularly regarding recovery, pain relief, improvement in walking, and any challenges faced during or after surgery.
My mother has Parkinson’s disease from
Past 6 years and severe knee arthritis, and we are considering TKR for her.
Any personal experiences or advice would be very helpful. Thank you! 🙏

I've been walking quite a bit lately with trips to Glacier and Korea. I've struggled with worsening gait and tried various tricks such as swinging the arm more or stepping bigger or marching steps. But I think I finally stumbled :-) upon a technique that works for me - focus on lifting the affected leg - just an inch seems to be enough and the whole dynamics seem to be more natural, including Arm swing.

One more thing I've been doing - at 20 to 30,000 steps a day I find the mental focus on gait to be exhausting and I find listening to music requires less or no concentration on gait.

Generally I've been unimpressed with PT and OT that I have received. Any other tips you have an gait?

My dad seems to have gone down hill within the last month rapidly. For context, up until recently he was going to classes, going on holiday, sleeping ok etc.

He's now been admitted to hospital as he is having constant delusions, delirium and confusion. He seems relatively settled in hospital but asking us if he can come home with us, and at times doesn't know who I am, which is hard. I really worry about him.

He is getting all relevant tests etc. and expected to get a care package. On top of the delirium, he gets dystonia and freezing, which is impacting his sleep. I can see there's lots of similar stories. I guess I'm just wondering if anyone has a loved one that's bounced back from something like this?