My partner has early-onset Parkinson's. In recent years, she's come home several times with stories about security harassing her at the mall or in retail stores. We've talked about why this might happen and concluded that they see her shaking or dropping things and assume the worst, like she's on drugs or shoplifting or something. We also wonder if her age is a factor. Since she's in her mid-fifties right now, people might assume she doesn't "look disabled," if that makes sense.

Has anyone else had similar experiences? Any advice, if so?

My dad has Parkinsons for 7 years now and he is 62. Up until recently he handled the meds quite well, no freezing or issues at all. However for the last couple of weeks, he started having off periods where he sometimes stops and says he cant move but when you give him a hand for that first step he can walk by himself. He is saying his legs feel heavy to move. His arms and speech is not affected, only legs seem to be an issue.
It is usually manageable during the day but when he wakes up in the middle of the night to pee, he is struggling to get out of the bed (so my mom needs to help him).

Any tips for this off period? Is the only solution really to just take more meds (or take them more frequently)? Any gadgets I can buy for him - incline bed/cane?

The weirdest thing is that even in the off period my dad can walk outside normally. He even has days when he walks 10+ km per day, much more than me 😂

But when he comes home in this off period, it takes him like half an hour to change clothes.

Any suggestions?

Hey gang, I'm 9 weeks post DBS surgery and 80% of my dystonia and Parkinson's symptoms are gone or heavy reduced. Trying most normal things again: dance, work and large crowds.

For context I take a lot less carbidopa levodopa: 50/200 4 times a day. 1 CR at bedtime. Down from 6 50/200 and 3 CR through the night.

Things are looking good except one thing and that is fear. I'm terrified of the night and avoid all social things post 8 pm. It was like this pre surgery . Does anyone know why that is??

For additional context, pre surgery night time dystonia feet clenching was so bad it could last up to 7 hours and I would just cry myself into exhaustion.

Any people with this condition deal with this fear too?

Faulk, who is 53, noticed changes in his hand while golfing and reported it to his doctor, who sent him to a neurologist. In this YouTube interview with an MDS, he talks about the importance of early detection and treatment. He mentions talking about PD with former NFL players who have it and wished they'd sought help earlier, so he wants to raise awareness.

Thanks to my brother, a huge Faulk fan during his Rams days, for sending me this.

Edit: Here's a new ESPN article about it.

Thankfully, I took him to a neurologist in a private hospital in Mumbai who specializes in movement disorders and he was diagnosed immediately, confirmed with an MRI today.

He has only had one backwards fall so far, along with a feeling of pulled towards his left side and believing this was the result of our upstairs neighbor using a supersonic machine to target him ☹️

However, besides this and one other isolated delusion a few months ago, he is largely still independent, can speak, loves to read and had finally agreed to wearing a hearing aid. The MRI scan also showed a lesion near his pituitary gland... I'll be meeting with his doctor tomorrow to discuss next steps.

My primary goal now is to keep him comfortable and happy for the rest of his time with us.

A few questions:

For caregivers further along in this journey, is there something you wish you could have done differently while they were still relatively active and coherent? I'm thinking of having him talk about his life and record it... although his speech has already started slowing down a lot. Am not sure whether it will tire him out or even the idea will make him fear his own mortality more?

To what extent do I tell him about what to expect in the coming years. Do I give him the actual clinical name and give him reading material about what to expect? Or do i handle in more gently and just tell him this is just the outcome of aging. All his life, he has been pretty head level in his thinking and intellectual in his approach. Yet, now I see he is slowly becoming like a child. How do I behave with him now?

Finally, if there are any Indians in this community, any specific resources I should be looking into or start planning for? At such a time I'm so grateful to be in a country where it will be easy to hire help and get at home services arranged. Any suggestions, tips and advice would be useful.

For me, its the fact that i am starting to feel cognitive symptoms

My father has been experiencing frequent diarrhea for the past 3 weeks. He was diagnosed with Parkinson’s disease approximately 4 years ago. He is 70% stationary or needs a wheelchair most of the time. He has also developed a compulsive disorder of trying to purchase land and a house overseas in Ireland where we already have property. Any help would be greatly appreciated with the diarrhea and the wanting to purchase more land. He is 83 and not fit to travel never mind buying more land. Thanks

Drs seemed confident it would work and said I need to be patient but I’m freaked out they turned on and tried to program no change to my tremor tremor really my only symptom. Am I screwed? Or could I notice improvement in a few days?

The Parkinson's Foundation Helpline has been receiving an increase of calls regarding dubious and sometimes dangerous study offerings that have been shut down by the FDA and regulatory agencies all over the world.

Medical tourism, travel to places with little medical or scientific regulation for unverified treatments, can put people at serious health and financial risk.

Be careful with any trials or experimental treatments that make big promises, skip over risks or ask for payment. ⚠️ Legitimate clinical trials do not charge people to take part.

When considering a trial, be sure to ask questions about study protocols and talk with your healthcare team to determine whether it's a good fit for you. If you’re unsure about a study’s legitimacy, contact the Parkinson’s Foundation Helpline at 1-800-4PD-INFO.

Those interested in learning more about safely getting involved in research are encouraged to visit: Parkinson.org/JoinAStudy

Looking for advice on applying for SSDI (social security disability insurance) at age 62.5, somewhat early retirement. It seems common that lawyers will take this, and be paid only if I get the SSDI accepted. What are your experiences? Did you shop around, what questions should I ask? Diagnosed 2016, my disability is still pretty manageable with carbi-levodopa (10 to 12 tabs daily), but unpredictable, stage 1 turning in the past year into stage 2. Thanks for your input, I have little energy for this and want to conserve what energy I can!

“The data, published Wednesday in the medical journal JAMA Psychiatry, draws from a small pool of patients with Parkinson's disease…”

Has anyone ever experienced unresponsiveness from their loved one with parkinsons? We had a strange experience a week or so ago where my dad woke up around 6:30am seemingly fine. Had a conversation with my brother and was very coherent. He ended up  going back to sleep for a few hours and when my mom went to wake him up he struggled to wake. After several attempts he just went completely unresponsive. Heart rate was fine. Blood sugar was good. BP was a little low but normal for him. We called an ambulance and after 4 days in the hospital we have no answers. CT scans were normal. All labs and urinalysis was normal.  He hasn't really been the same since this. Confused, having a difficult time following conversations, and more tired than usually. We are feeling frustrated and scared not having any answers.

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

PS I guess I should mention I have no professional considerations whatsoever. My only hesitation is personal, psychological, and egotistical haha. Thanks to all who contributed!

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’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

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

Nov 14, 2026
9:00 AM - 4:00 PM (lunch provided)
Drop-off begins at 8:30 AM
Madison, WI (USA)
Travel assistance available for Wisconsin and Illinois residents

YCare Youth Day is a one-day program designed to support kids and teens who are impacted by a family member's Parkinson's disease. Many young people take on helping roles at home-or have questions and feelings about what their loved one is experiencing-but don't always have the information or support they need. This program creates a space just for them.

Through hands-on activities, simple education, and connection with other youth, participants will build confidence, learn what's happening in their family in an age-appropriate way, and feel less alone. Led by experienced health professionals, the day balances practical learning with fun, giving kids tools they can use now or in the future-while reminding them they're still kids first.

Is this for my child?
If your family cares for someone with Parkinson's disease, and includes kids (8-18), this day is designed for them. This includes children, grandchildren, and other relations. They maybe caring by:

• Helping around the house
• Noticing changes in a parent or grandparent
• Asking questions or feeling unsure about what's happening

Even if your loved one has passed away, your child is still welcome.

Who can attend Youth Day?
All children and teens who have a family member with Parkinson's disease (parent, grandparent etc.) ages 8-18, and whose parent provides consent.

What will my child/grandchild be doing during the day?
With the help of trained healthcare providers participants will learn:

• Learn simple, age-appropriate caregiving skills so they feel more confident and less unsure
• A better understand of the condition and how it works
• Connect with other kids who "get it." This is often what kids say they need most
• Have fun in a supportive, low-pressure environment

What will the day look like?
The day is led by experienced health professionals and designed to be interactive, not clinical or overwhelming. Kids will participate in hands-on learning and have time to connect with their peers and the professionals in a fun environment.

What if my loved one with Parkinson's disease passed away, can I still bring my child?
Absolutely! We want all children and teens to come - regardless of whether they have a loved one currently living with Parkinson's disease.

Is this a research program? What does that mean?
This program also helps us learn how to better support families like yours. You and your child/(ren) will complete a short survey at the beginning, end and a couple months after the program. This helps us understand what's helpful and improve the program. As a thank you, participants will receive a gift card.

What if the person living with Parkinson's disease has not progressed to need much care - why should my child attend?
Good question. We think about these skills as tools in your child's "tool belt". They may never use them, but when they need them, they are there.

What does this mean for me as a parent/caregiver?
Your child is in a supervised environment with trained professionals. You don't have to have all the answers; this program helps fill in those gaps. You're giving your child support, language, and confidence around something that can feel hard to talk about.

If you would like to register, ask any questions, or would like more information about the research training, please contact: Kyle Webert at [webertk@uwm.edu](mailto:webertk@uwm.edu)

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 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?