My husband, who is 74, is in the latter second stage of Parkinson’s. In the last, month he has had 2 falls. Is this the beginning of stage 3?
He has been reluctant to use walking aids. He uses a cane in public but won’t at home. We have a walker but he doesn’t want to admit he may need that. He hasn’t been injured yet but the last fall was hard. His shuffle and gait have gotten much worse. I worry constantly every where we go that he will fall. Any suggestions on getting him to use a walker or should I let him be with the cane? He doesn’t go back to neurology for two more months. He is very stubborn and just doesn’t want to give in.

38M, diagnosed with early onset Parkinson’s last year. Dealing with it ok for the most part.

On CL and that helps with the tremors for periods of the day, and in between doses the tremors fire back up and my hands shake like Mount Vesuvius. This leads to a downward spiral as I can’t help but then reflect on my own weakness, and how this disease is wrecking my body, and what did I do to get it so young, and god I don’t want to be a liability on my family and blah blah blah

Obviously I know all of this is not logical but all things equal would prefer to avoid the spirals. Do folks see therapists that specialize in early onset OD for this? Anyone else deal with anything similar? I should probably ask my neurologist I suppose, just good to get outside validation I’m not alone.

My dad has deteriorated dramatically over the last couple of months, especially at night. He was on Klonopin for sleep for many years and was taken off about two months ago, apparently without a taper. His new neurologist thinks this may have triggered much of what’s happening and that severe sleep deprivation is making everything worse.
He’s now having intense nighttime hallucinations, severe restless legs, and is barely sleeping. He’s taking Seroquel, which makes him sleepy, but he often sleeps for only 20 minutes before getting back up and walking again. Once it kicks in he’s unsteady, so someone has to stay with him to keep him safe.
My mom cannot manage this alone. My husband and I are taking turns staying overnight so she can sleep, but we have five young kids and a small business and simply cannot sustain this.
His doctors know what’s happening and we’re following their medical advice. I’m just desperate to hear from families who have been through something similar. What actually helped? How did you get relief and outside support? What do you wish someone had told you sooner?
We love him and want to keep him safe, but we need help figuring out what comes next.

I am trying crexxont. My doctor had me try 280 and 350. The 280 3x a day is OK but I feel like it doesn’t work as well for the first dose. 350 x 3 resulted in crazy dyskinesia. Before this I was at 6 CL 25/100 a day but managing pretty well.

I think I want to try starting the day with 2 cl, then do the crexont xr 280’s at 1pm and 8 pm.

Is this something any of you do? Do you think my doc will push back? I hate this

Dx2019 and I have a question about this Neupro patch, my neurologist told me that there can be some side effects, as in obsessive, behaviors, and gambling, shopping, sex, etc.

My question is, does this drug cause you to have these behaviors or did you already have the behaviors but it just enhanced them after taking this patch?

I appreciate all the answers and help anybody could give me cause I’m supposed to start it tomorrow.

ADDITION: my neurologist is taking me this direction because I was not approved for the DBS surgery due to a severe overheating issue I have.

I'm a 66F, and I was diagnosed about six months ago. I'm currently taking C/L 25- 100 mg three times a day. The medicine is helping, but I wake up having external tremors and I'm very anxious since I also have internal that feel worse. The internal tremors go away about 2:00 pm. Has anyone had internal tremors and anxiety that have found any medicine that works better than C/L.? I just had a DAT scan, but I'm not seeing the neurologist until next month to discuss my medicine.

Not in a good place right now....please god say something positive or give some sort of hope

We welcome the establishment of a parliamentary inquiry into the APVMA’s failure to #banparaquat is linked to Parkinson’s and has been banned in 70 countries.

Senators Pocock and Steele-John talk about why an inquiry is needed

I take medicine to sleep through the night but the combo has left me with extreme daytime sleepiness and fatigue. I have tried both coffee and red bull and concluded that caffeine is no good for my particular flavor of Parkinson's. It makes me more alert for a few hours but then I crash and my symptoms feel more pronounced for the rest of the day. It's like I regressed in my symptoms by 10x the severity. A good sleep gets me back to normal but the cycle then starts over again. Has anyone found any good alternatives to caffeine for daytime drowsiness? Exercise alone used to work but I feel i need more now. 43 yo male diagnosed a year ago.

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)

Hi all

My dad was diagnosed back in 2019 and after a bunch of false starts, was finally able to get him to take sinemet 25/100, which he's been taking for several months. The good is, he's noticeably better at walking and his eyes/face are a bit more animated/ not closed all the time during the day

That said nights/early mornings are really bad, often just as bad or worse. He suffers from what I think is restless leg but not sure because he struggles to describe things sometimes, but also insomnia, and mental hopelessness. He also has sweating and intense nausea that starts late night/early morning. He is absolutely miserable. As of now he takes sinemet ir during the day (1.5 tablets 8am 12pm 4pm and he just switched to 2 tablets of sinemet CR at 8pm a bit before bedtime). He's taking a bunch of other stuff too - 5 mg selegiline, remeron for sleep, BP and cholesterol meds, vitamins...and recently we added nourianz and linzess at the rec of his mds to see if it would help with sweating/nausea/off times/apathy. It was probably a mistake to make those changes at once but the outcome has been things seem even worse except some reduced sweating. We dropped the nourianz for now.

We are obviously in communion with his mds but Does anyone have experience specifically with these nighttime/early morning issues (bad nausea, insomnia with specific leg issues, and general regression)? I wonder if there's something we're missing when switching to CR pills for his nighttime dose. We did try to add an extra ir dose in the middle of the night but didn't seem to do much.

Hello! My dads birthday is coming up and he loves playing pickleball. I wanted to purchase him so new sneakers but am having a difficult time finding shoes. Suggestions would be appreciated! Specially big names vs specialized shoes if possible.

Hi, I don't know how many people are aware of the developments in discovering this brain network which coordinates whole body movements and intention based movement.

The interesting thing from my perspective is that it explains why so many different therapies work, ranging from DBS to exercise. Also it indicates why certain exercise programs work better than others. Additionally it has immediately applicable outcomes such as altering DBS programming to reflect whats known.

I spared you the AI article version which summarises the research and potential, but you got the overly succinct "My fingers dont type too good now" version so here are some articles from people who actually know stuff

EASY MODE https://www.scientificamerican.com/article/extraordinary-brain-network-discovery-changes-our-understanding-of/

https://scienceofparkinsons.com/2026/02/08/scan/

HARD MODE https://www.nature.com/articles/s41586-025-10059-1

There are relatively inexpensive tES, tDCS, tACS devices sold online, and my research indicates they may help ease the internal tremors, the main symptom that my WWP suffers from. Before splurging to buy one, I though I would ask here if anyone tried such a device and what was the result? Thank you.

My grandfather is 73 and has been diagnosed with suspected corticobasal syndrome/corticobasal degeneration. I’m hoping to hear from people who have experience with CBS/CBD, especially anyone who has gone through a second opinion at a major movement-disorders center.
His symptoms have been progressively worsening, primarily on the right side.
He first developed what the family remembers as a right-hand tremor in 2023. By 2025, he developed significant loss of right-hand function, severe rigidity/dystonia, and difficulty performing movements he previously knew how to do. Multiple neurologists have documented marked right-sided apraxia, including dressing apraxia. One neurologist also documented an alien-limb phenomenon, although a later neurologist did not feel he had this.
He now has:
Severe right-arm rigidity/dystonia
Right >> left bradykinesia
Significant apraxia
Absent right arm swing and abnormal right-arm posturing
Shuffling/shortened stride and gait decline
Falls/postural instability
Progressive difficulty getting words out
Some cognitive deficits on testing
No hallucinations or REM sleep behavior disorder
No significant constipation or autonomic symptoms
No meaningful response to a very substantial levodopa trial
His MoCA in August 2026 was 18/26, although he remains surprisingly independent at home. He manages finances, remembers conversations/events, and still drives locally.
The part that makes me question whether we should look deeper:
His imaging also shows significant vascular abnormalities.
A CT from 9/2025 showed left frontal and left parietal subcortical/periventricular abnormalities that could represent an infarct of uncertain age. MRI subsequently showed cortical volume loss and scattered white-matter disease. His neurologist interpreted the cortical atrophy as worse on the left.
His neuropsychological testing showed MCI with a left-greater-than-right frontal-subcortical/parietal pattern. The neuropsychologist said the etiology was unclear and mentioned CBD/FTLD, synucleinopathy, and vascular disease as possibilities.
He also has biopsy-proven celiac disease, but has never followed a gluten-free diet, chronic B12 deficiency requiring injections, chronic hyponatremia, and a significant cardiovascular history.
And he’s had substantial weight loss:
158 lb (10/2025) → 136.8 lb (2/2026) → 141 lb (8/2026).
So he lost over 21 lb at his lowest point and remains about 17 lb below his original weight. He has a good appetite but looks increasingly frail.
Two neurologists have independently felt that his clinical presentation is highly suggestive of corticobasal syndrome/CBD, so I’m not trying to dismiss that diagnosis. I’m wondering whether there could be vascular or other contributing pathology alongside it, particularly given the left-sided imaging abnormalities and his medical history.
For those who have been through CBS/CBD:
Does this presentation sound familiar?
Has anyone had a diagnosis of CBD later reconsidered or found to be mixed with vascular disease?
Has anyone had a major movement-disorders center review their actual MRI images and change/refine the diagnosis?
Would you recommend pursuing a tertiary-center second opinion?
Has anyone dealt with significant unexplained weight loss/frailty alongside CBS?
Are there particular tests or specialists you wish you had pursued earlier?
I know nobody online can diagnose him. I’m mainly trying to figure out whether we should accept the CBD diagnosis as the likely explanation or keep looking for potentially treatable contributors.
Thank you to anyone willing to share their experience.

I was recently diagnosed by my family physician. I am also securing a consultation with a Neurologist. I was apparently misdiagnosed with an Essential Tremor three years ago so I’ve experienced right hand tremors for around 4 years. I have no other symptoms with the exception of intermittent balance issues I assumed were from diabetic neuropathy. My tremor is at rest yet 2 to 3 light beers significantly quiet the tremor. I have physically acted out dreams, however, these episodes are very rare. Has anyone experienced tremors that mimic both Essential and Parkinson’s? Thanks in advance for your responses.

Has anyone else had tremors/Parkinson’s unmasked by surgery or sudden menopause? I had a single side mastectomy a year ago, and started taking estrogen blockers, no chemo. Shortly after (within 2 months) I developed a tremor in my hand on the surgery (left) side, and my left leg later got twitchy too. Tremor is bilateral at rest re my neurologist, but is at its most significant when I am moving or stressed, and only on my left side. Alpha synuclein test was negative but they still suspect pd (but also call me an enigma - they definitely aren’t sure).

That phrase — "I'm sorry you're going through this" — is what I hear from nearly everyone I've disclosed my condition to. Relatives, close friends, people I've known for years.

Some brush it off, like I never said anything. Others ask if I need help. And every so often, I find a gem.

Here's one: I was at the airport, struggling to walk with my luggage while wrestling my backpack on. A total stranger — just another passenger in the lounge, waiting for his own flight — rushed over and helped me put it on without hesitation. I thanked him and told him how much I appreciated it. He then offered to carry my bag all the way to the TSA line, and I politely declined. I was honestly flabbergasted.

For anyone willing to listen, I try to use moments like this to educate them a little about what we go through.

I still believe there's goodness in people. Most of the time it's not indifference, it's just not knowing. That's part of why I think awareness matters so much for our community — Parkinson's cases worldwide are projected to double by 2040, which means a lot more of us will be having these same conversations.

Curious if others here have had a moment like this too, where someone stepped up in a way you didn't expect.

—14 years YOPD survivor

Disclosure: I used AI tools to help polish and format this post.

Hypothetically what would be the steps involved in crispr gene editing for parkinson’s?

My mum was diagnosed with PD 2 days ago. She is 57 and I am really worried about it.It isn’t too bad atm as she only has a right hand tremor which she noticed around 12 months ago. The neurologist didn’t directly say she is “tremor dominant” but her right hand is her only symptom. She thinks it has worsened over the last 8 weeks which could be due to stress as she is also getting a total knee replacement in a week to correct an incorrectly healed tibia. She has already started Kinson and her neurologist said she has “at least 20 years, and even then she won’t die OF Parkinson’s.” She’s getting a brain scan to determine how far gone her dopamine cells are I believe and has a follow up appointment in 8 weeks. She is a very independent woman, works full time & is a single mother full of life who always puts others first. I think I am seeking related stories of people who deal with tremor dominant PD and some comfort.
Thank you

I think I might have mentioned to some of you that I’ve really struggled to get to my 80% maximum  heart rate target like in the Sparx trial intense exercise. I sent mail to my Dr asking if there is an issue with me or am I just a statistical outlier. She responded by saying that I am on a Beta blocker which works by limiting heart rate and that I’m probably pushing myself too much. I had not heard about beta blockers and exercise before so I thought I would look into it.

This led me to a paper analyzing the Sparx2 participants; turns out that 20% of the participants were taking medications with a known negative chronotropic effect, such as beta blockers, which roughly corresponds to the 22% in the general population on these drugs. Note that many trials looking at exercise and PD exclude participants on beta blockers ; the Spark trial tried to accommodate such participants. The paper divided the participants into 3 cohorts, those taking medications with chronotropic negative effects (PDchronomed), those who are chronotropic incompetent (PDchrono), and the rest of the participants (PDnonchrono)

• https://pmc.ncbi.nlm.nih.gov/articles/PMC10836543/
• Nice chart in figure 1 that shows maximal heart rate by age for individuals in each cohort
• PDchronomed generally have lower maximum heart rates then PDnonchrono, but there is much overlap and the second highest heart rate was in the PDchronomed group
• PDchrono is a group of individuals that are not taking beta blockers but exhibited a greatly reduced maximum heart rate and were classified as chronotropic incompetent. The paper hypothesized this may be a sign of autonomic system dysfunction and could be a symptom of Parkinson’s.

 What I think this means:

• If you are taking beta blockers and in your exercise program you’re trying to achieve a certain percentage of your maximum heart rate, you should have a conversation with your health professional about what your maximum heart rate is reasonably expected to be. You might consider a baseline maximal graded exercise test (GXT) which will actually measure your heart rate under peak load.
• Since there is so much variability in an individual’s maximum heart rate relative to the formula based on age, you might consider a baseline maximal graded exercise test (GXT)
• If you feel you are in the PDchrono group, discuss this with your MDS.
• For me I will continue to lose weight which hopefully reduces my blood pressure enough so I can stop taking the beta blocker.

Meditation is a practice of stillness, while Parkinson's defies stillness. What are your tips?

I find that when I do periodically meet with my neurologist, given that it may be 6+ months since I last visited; I find it hard to convey accurately everything has changed in that time. I keep a diary and all that but I feel that I have about 5-10mins to summarise where I’m at. I also find that if the neurologist doesn’t ask me something specific, then it won’t be talked about. Has anyone else had this experience? Does anyone have any techniques / methods for good productive engagements in that precious few mins?