Hello fellow PDers! Just curious: My sister asked me why I don't tell co-workers (or "work friends") about my diagnosis. I told her I don't feel the need to disclose since I'm in the early stages with no noticeable symptoms: no tremor, I walk fine (w/meds) etc. If I had to explain a limp, use of a cane, or shaking, I'd probably tell people. (Wouldn't want them to think I'm drunk or something!) I also don't want people looking at me, evaluating how I walk or if I'm not making sense or whatnot. (Yes, I know people prob wouldn't be doing that but that's how anxiety works) I think a lot of us do that, no? Keep it under wraps until you can't hide it anymore? Mrs. Terry Crews did that, MJFox did as well. So: Just wondering,,,are you out? If not, do you have similar reasons? TIA! and Good luck to us all xo

Hi, just wondered if anyone has experienced similar and has any advice.

My partner was diagnosed 11 years ago (55yo now). She’s never been relatively normal on the meds but the last few months there’s a pattern where she kind of starts to shut down from mid afternoon. So much that when we go away anywhere we are back by 9pm and even then it sometimes causes discomfort and pain to walk. Only a few years ago she was hiking up mountains.

I know there’s all sorts of factors, but she was prescribed a medication I can’t remember by a nurse in the early days and she felt great, professor wasn’t too impressed and stopped. I’m just trying to figure out if meds could be better or it’s just PD and she’s got to deal with it.

Professors recent recommendation (not working)
In the morning
Rasagiline
Amantadine

During the day
3x 25/100 sinemet then
2x 12.5/50 every 3 hours

Sorry it’s so long, thanks for reading. Tia

So my father (65) has been diagnosed with Parkinsons for the past 4 years. He grew up as an extremely outdoors person (playing soccer, football, swimming, etc.) but with the Parkinsons he cant do those activities anymore. He has been banned from climbing ladders or a step stool, and recently from being in the front yard without supervision. So he never tried to experience indoor activities he can enjoy. He can't drive due to him blacking out while driving once and the fear of him hitting someone if it happens will haunt him so he was understanding to give up on driving.

Due to this he has been depressed and feels more trapped in a cage. He doesnt want to just do his daily practice of speech and physical therapy much because he feels that it does nothing even though the doctor tells us it is helping.

I love my father and I want to help him out. Is there any suggestions on things we can do to help him out?

Someone close to me has recently been diagnosed with Parkinson's. Parkinson's symptoms and response to medications seem to show sex differences, but there's a lot more information out there for men compared to women. I'd appreciate any women sharing information, experiences, and things that helped them so I can be as helpful and supportive as I can. If you have experience with the NHS (England), that is doubly helpful as we are not impressed or feeling at all supported right now.

Thank you in advance!

My father is on senimet with other medications and he recently caught a chest infection and before i noticed and got him on antibiotic he had low grade fever and HOLY MOLY the excess movement was crazy he was basically dancing until the dose wore off My family was freaking out before we connected the dots so i hope this is clear if you face it

I have been reading about REGENERATE-PD AB1005 clinical trial. I want to apply but I am not eligible yet but I will be in 5 months. Does anyone have any experience with this? I would be very interested to hear how it all went and how the results are

I’m 48 and have had symptoms for 2.5 years; I’ve not yet started medication. I spend 7-8 hours a day sitting behind a screen for work and although I try to exercise around this, time is limited due to driving children to after school things and household stuff.

My limited exercise has also recently been interrupted by intermittent lower back pain, meaning there can be a week or two from time to time that I’m not active apart from walks. I’m beginning to suspect the back pain is Parkinson’s related.

I feel that my symptoms are accelerating and I wonder if it’s due to my sedentary lifestyle. I love being active and I wonder whether it would be a good idea to switch to more active work - gardener, cleaner etc. I would miss the mental stimulation of my current job but feel that I have to prioritise my health. On the other hand, could a physical job only work in the short term if I keep physically deteriorating?

I’d welcome any thoughts or similar experiences. In your experiences is being more active in the day good for physical strength, balance etc, or is it only the high intensity exercise that helps slow physical deterioration? Has anyone taken on a more active job, or has anyone struggled to maintain one? Many thanks

Hello everyone,

I’m looking for advice and experiences from people who have Parkinson’s disease themselves or care for a parent or family member with Parkinson’s and similar symptoms.

My father is 74 years old and has been living with Parkinson’s disease for approximately 3 years. He also has a long-standing history of epilepsy, which has been treated with medication for around 15 years.

Recently, one of our biggest concerns has been a persistent and distressing belief that something is inside his eyes.

1. The main symptom

My father repeatedly says that there are kilos of soil or dirt inside his eyes. He seems convinced that this is real and sometimes tries to check his eyes in the mirror or remove what he believes is there.

He does not seem to recognise that this belief may not correspond to what is physically happening. It is very difficult for the family to reassure him.

We are concerned about whether this could be a somatic delusion, Parkinson’s disease psychosis, a medication-related psychiatric symptom, or something else.

I would particularly like to hear from anyone whose parent with Parkinson’s has developed a similar fixed belief involving their eyes or another part of their body.

• Has anyone experienced a delusion involving dirt, a foreign object, or something physically present inside the body?
• Was it related to Parkinson’s disease, medication, cognitive changes, or another medical condition?
• What helped the person recover or manage the symptom?
• Did the belief eventually disappear, or did it require long-term treatment?

2. Current medical history

My father’s relevant medical history includes:

• Age: 74 years
• Parkinson’s disease: approximately 3 years
• Epilepsy: approximately 15 years
• Hypertension
• Hypothyroidism
• Type 2 diabetes
• Difficulty walking associated with his overall health and Parkinson’s disease

His seizures have not recently increased, as far as we know. Our main concern at present is the persistent belief about his eyes.

3. Current medications

The medications we have on our list include:

• Syndopa Plus 125: one tablet in the morning, afternoon, and at night
• Levigress 500 mg (levetiracetam): morning and night for epilepsy
• QUtan 25 mg (quetiapine): at night, prescribed for the current symptoms
• Thyronorm 100 mcg: for hypothyroidism
• Asar 40 mg: for blood pressure
• Ecosprin 75 mg: aspirin
• Sitamerz M 50/500: for diabetes
• Rosuless-F 10: for cholesterol/triglycerides
• Urotone DS 50 mg
• Bio-D3 Max: vitamin/calcium-related supplement

Please note that I am listing these from his medication records, and the exact ingredients of some branded products should be verified from their packaging.

I would appreciate hearing from anyone whose family member developed hallucinations, delusions, or behavioural changes while taking levodopa/carbidopa or levetiracetam.

Questions:

1. Could either Parkinson’s medication or epilepsy medication contribute to these symptoms?
2. Have you seen improvement after a neurologist reviewed the medication regimen?
3. Has low-dose quetiapine (25 mg at night) helped in similar cases? If so, how long did it take to notice a difference?
4. If quetiapine does not help sufficiently, what options did your specialist discuss?

We will not change or stop his medication without his treating doctor’s guidance.

4. Could vitamin B6 or B12 deficiency be contributing?

I am also investigating whether nutritional deficiencies could be contributing to his neurological or behavioural symptoms.

His blood tests from May 2026 showed the following:

• Vitamin B12: 203 pg/mL, slightly below the laboratory reference range.
• Homocysteine: 34.69 µmol/L, elevated.
• Folate (B9): above 24 ng/mL, within the laboratory’s stated normal range.
• Vitamin D: 24.3 ng/mL, below the laboratory’s stated target range.
• Haemoglobin: approximately 11.3 g/dL, indicating anaemia.
• Transferrin saturation: 8.64%, low.

Vitamin B6 was not measured in that report.

I came across a case report discussing severe seizures associated with vitamin B6 deficiency in a person receiving levodopa/carbidopa. This made me wonder whether B6 status could be worth investigating in my father’s case. I understand that a single case report does not establish that B6 deficiency causes psychosis or delusions in people with Parkinson’s.

Questions about vitamins and testing:

• Has anyone with Parkinson’s and delusions been found to have low vitamin B6 (plasma pyridoxal-5-phosphate/PLP)?
• Did correcting a confirmed B6, B12, or other nutritional deficiency improve the symptoms?
• Is there evidence of a connection between levodopa/carbidopa and clinically significant B6 deficiency in patients like this?
• Given his elevated homocysteine and low B12, what investigations would be reasonable to discuss with his neurologist?
• Could his anaemia or other medical problems be contributing to confusion or behavioural changes?

I do not want to assume that vitamins are the answer or give him high-dose supplements without appropriate testing and medical advice.

5. What other causes should we investigate?

We want to make sure we do not attribute everything to Parkinson’s without checking for other treatable causes.

For people who have faced something similar, did the doctors investigate:

• Urinary or other infections and delirium
• Eye conditions or visual impairment
• Medication side effects or interactions
• Cognitive impairment associated with Parkinson’s
• Sleep disturbances
• Vitamin deficiencies or metabolic abnormalities

If a person develops this kind of fixed belief, what assessments were most useful in identifying the cause?

6. What has helped in similar cases?

I would especially appreciate practical experiences from families who have already gone through this.

• Which specialist helped most: a movement-disorder neurologist, a neuropsychiatrist, a geriatric psychiatrist, or someone else?
• Which treatment or medication review made the greatest difference?
• How did you respond when your family member insisted that the belief was real?
• Did you find any communication or distraction techniques that reduced distress?
• How did you prevent the person from repeatedly checking, rubbing, or trying to remove something from their eyes?

We are trying to find a way to reduce his distress while keeping him safe and preserving his mobility and quality of life.

I would be grateful for any experiences, suggestions about questions to ask his neurologist, or recommendations for reliable resources.

I am not looking to replace professional medical advice. I am hoping to learn from people who have encountered a similar situation and understand which avenues were worth exploring.

Thank you for reading and for sharing your experiences.

Parkinson's research depends on people living with the disease and their care partners. But what does research participation actually look like, and how do you find opportunities that are right for you?

We're hosting a free, practical conversation on Wednesday about the many ways people can contribute to Parkinson's research, from observational studies and genetic research to clinical trials ➡️ https://www.parkinson.org/events/2026/Oct21WW

Lately, I've been waking at about 2 or 3 AM and I'm unable to fall asleep again most of the time. I have been sort of compensating with a quick nap in the afternoon. But I feel that's just making things worse at night. Any tricks for falling asleep again and staying asleep for the rest of the night? I get in bed at the same time 9 PM every night. So I am getting some sleep, but not nearly enough.

Hi everyone
My father (71) was doing fine with syndopa(C/L) four times (1 dose) a day however suddenly 20 days ago his pain increased and his pain was unbearable in the off periods.
So his neurologist changed the dosage to 1.5 syndopa twice a day and 1 twice a day along with syndopa cr250 at night . Even after that the effect only stayed for 2 hours max .
Syndopa was prescribed in a gap of 2 hrs , so next 2 hours ( off periods) was very painful.
Then the neuro prescribed entacampon with syndopa which did not suit my father

So, now revised prescription includes
Syndopa 5 times ( 6am 9am 12pm 3pm 6pm )
Syndopa cr 250 at 8am and 10pm
Is it too much syndopa?
Gabapin ME300 at 10pm
Prexol 0.5 thrice a day

New concern: pain is controlled . However his body swing and leg shaking have increased. Along with mild hallucinations and conversation with no clarity.

Will it settle down ? Has anyone experienced this and found a solution?
We have been struggling as we are yet to find a regimen that suits this advanced stage which happened all of a sudden.

My father (upper 70s) has been complaining of accidentally clicking, or over-clicking, his computer mouse due to his tremors. Are there any adaptive computer mice that could help him? Thanks.

My father was diagnosed 2020 after being hospitalized with pneumonia. He went to rehab and learned to walk again with a walker, I transferred him to an assisted living facility but while there he QUICKLY deteriorated and went to a nursing home where he’s been bed ridden for a few years now.

Around 2024 he was hospitalized for seizures and given medications for it. He was stable about 8 months and then hospitalized again for seizures. Now he’s on more anti seizures meds but lately I’ve noticed his tremors getting worse. Now it’s full body tremors. He doesn’t lose consciousness or anything and he says he can feel them coming on but it’s just heartbreaking. He’s lost sight in one of his eyes while he has low vision in another. Due to this he also needs assistance eating since he can’t see food to feed himself. Im thankful he recognizes me and remembers events/things we tell him.

Anyway, all this to ask: does anyone else have a similar experience with PD and seizures?

My husband has been diagnosed since 2017. His Parkinsons exhibits itself in loss of fine motor skills.

He has an upcoming surgery to remove a Staghorn Kidney Stone. Because of severe back issues, his urologist is not able to perform the standard surgery for removal. His urologist suggested that he do this surgery in 2 phases 10 days apart and is concerned about the cognitive impact of the surgeries so close together. My husband has to have the stone removed. I have asked his Urologist if his kidney is completely damaged, would removal of his kidney be a better alternative? Longer surgery but only 1 time instead of 2 - 10 days apart with shorter durations.

Please provide your opinion

Ok, I’m back, and just like my previous posts, I’m desperate for answers.
My dad, 66, was diagnosed last August.

His pain is reaching level 11 out of 10. It’s bringing him to actual tears some days.
Some days he’s just happy it’s “mild” at a level 5, but it’s always there.

It’s in his hips and legs. My mom will try to massage him and says he leg feels “tight”
She says she can feel it in his calf - it’s just locked up

I’m so frustrated with his doctors. I’ve been going to his appointments with him and they’re all so careless.
One doctor said to do highly invasive spinal surgery, one is playing guess check and revise with meds, and one just keeps doing the same spinal injections over and over.

So here’s a summarized breakdown of what we’ve tried:
- Naproxen (or however it’s spelt) = no help
- Baculofen = no help
- Increase in C/L with extended time release = no help
- steroids and spinal injections = no help
- had a nerve test done that lead the doctor to encourage the increase in C/L but didnt provide definitive answers
- imaging of his hips and spine - showed potential spinal stenosis
- physical therapy, land and water = idk. It varies too much but maybe it’s helping..?

He’s using a walker now.

Here’s the hardest part… in May of this year he was fine.
In June the pain started but he was fine. He went on multiple summer vacations with the family and he was fine.
Today, he doesn’t even know how to make plans because he doesn’t know if his pain will allow him to move.

As you’d imagine, the unrelenting pain is causing him depression.
I’m having a hard time wrapping my head around the fact that less than a year ago he was going on walks/jogs every evening. He was smiling. He was adventuring.
Today, he can barely make it to church.

Please please please tell me someone has experience with this. Is there anything we should be considering? Is there anything we can do?

Thank you all in advance. I’m endlessly thankful for this community.

My mum has PD, diagnosed 2017 at age 53 but obviously it was undiagnosed for a while. The physical progression has been slow but we are more concerned with her cognitive abilities lately. This year we’ve seen a sharp decline. She’s been foggy and forgotten names etc for a few years but this past year it’s gotten worse and she’s had 4 fainting spells since May (always sitting, not standing, which is why I want more tests).

Her neuro seems to think it’s blood pressure related and dismissed my concerns about Parkinson’s dementia. My dad is her primary caregiver and I don’t think he is the best advocate for her in their appointments as he wants to bury his head and believe any good news.

I’m annoyed the neuro didn’t want to run any additional cognitive tests, even though I had asked if they were a possibility in the letter I included for their appointment last week. He wants them to run a 24 hour blood pressure test only before their next appointment—why not do multiple tests to check her cognitive abilities? They did one 12 months ago and it was “fine” but as a family we can see it’s gotten worse, which is why doing another wouldn’t hurt.

I want her to get a second opinion before it gets worse and potentially find a new doctor.

Just wondering if anyone else can share their experiences with cognitive decline in PD?

My wife was diagnosed with PD about a year ago. She's taking a dopamine agonist and she seems to be 'stable'. We both began tai chi (I do it also to make sure she does it) and we both work out )2-3x weekly) at a local gym. I've noticed that her tai chi movements are 'incomplete'. We follow a website that offers free examples to imitate, and she seems to be unable to make the complete movement. That said, she's never been the most athletic but before I say something to her, is this common? It almost seems that she thinks her body is making the complete movement but doesn't. She drives perfectly well and all other manual actions (except she tends to tilt plates while walking ...) seem to be normal. I try to offer gentle help and support but I don't want to push this for fear of totally demotivating her. Anyone with similar experience?

​

My grandfather is 70 years old and was recently diagnosed with Parkinson's disease. He is already experiencing symptoms such as slow speech, difficulty standing up after sitting, walking very slowly, poor balance, and occasional mild tremors in his hand.

Could you share any care recommendations or advice for him? He is feeling very sad right now.

PD affects my emotions sometimes making the emotional reactions feel like they have been multiplied many times over. Today was a sad day and the emotions have me wired, sad, and feeling regret at a high level. Which means I have to make a lot of coffee to stay awake until morning. PD normally keeps me awake most of the night and coffee gives me that extra boost on these nights. Going to sleep with headaches or high emotions tend to result in my worst REM acting out dreams nights. I stay awake until sunrise then sleep, a lot less REM daytime. And a week ago I acted out by standing up on my floor mattress and trying to run towards something i was chasing in my dream, i tripped on covers and I shot forward, crashing down on my knees. Two nights later almost the exact same. So not tonight. REM should be for REMind because you can have many good days of PD making u feel better and then a RDM dream reminds you that u have PD and it is not going anywhere.

I was diagnosed 2.5 years ago. I am 60 and feel that I am doing well. I have a hand tremor and identify several gradual symptoms but I am actively involved with medical and community support, and actively work on exercise and cognitive well-being. I still work full-time. My wife on the other hand sees a very different picture. Often she seems okay, but at times she breaks down, demanding I see reality, that I am declining fast, almost as if I am falling apart. I go to local dances and she won't go with me -- I think she may be embarrassed. She critiques me for repeating myself, evidence of cognitive decline. She is certain I must take a health leave from work and that I will be entitled to long term disability. Our two perspectives are quite different. Is her view a symptom of fear or grieving my condition?

One thing I forgot to mention from MDS Congress is that orthostatic hypertension was mentioned several times

- elastic binders around the abdomen are found to be effective

https://www.parkinson.org/blog/science-news/dizziness

- compression socks generally are not

My mom (72) has had PD for nearly 7 years and now has wildly swollen feet and ankles—they had to get her custom compression socks (that she, of course, refuses to wear). The edema a side effect from her meds, and doesn’t seem like they’re going down anytime soon.

So now, I (38f) am on the hunt to find shoes that fit and are comfortable, and it’s been such a challenge. Because of her postural instability, she can’t wear clunky shoes or shoes with a large sole which knocks most of the medical/senior shoes out of the running. Over the summer, classic Teva sandals worked pretty well, but winter is coming.

Welcome to any and all suggestions! Brands, styles, customization tricks, whatever you’ve got. Thank you all so much in advance.

I was diagnosed with Parkinson's a couple years ago. So far, I have been one of the lucky ones with minimal symptoms on the average day with a shaky hand being the most visible. However, I am noticing more and more that I have a physical reaction to stressful situations. Any situation where previously I would have just been mildly annoyed or slightly nervous now induces shakiness that is completely uncharacteristic for me. Things like driving in heavy traffic (even if I am the passenger), disagreements, etc. Having been a bit of a stoic in tense situations pre-PD, this is the PD issue that bothers me the most.

Anyone else having the same issue? Discovered a coping mechanism?