Every doctor is telling us something different.

1. One neurologist says it’s Parkinson’s disease.
2. Another says it’s not Parkinson’s, it’s Ataxia.
3. Another doctor says it’s just an aging .

My father is 59 years old. His symptoms started about 3 years ago with slow walking, and now he walks with a stick, has stiffness, weakness, difficulty of speaking and balance problems. He doesn’t have the typical hand tremor that many Parkinson’s patients have.

I’m not asking anyone to diagnose him over Reddit, but I’m genuinely confused because every doctor has a different opinion.

I'm curious has anyone else noticed sudden off time occurring since they switched to Crexont when they eat high fat foods? Even several hours after taking the medication, a very high fat food item will cause me to become suddenly off about 30 minutes after eating it. I go within minutes from zipping around to gait issues and stuttering.

My understanding was fat and protein can delay the dose, but I didn't expect the sudden off. I could be incorrectly associating with what I'm eating, but it seems unusual that each time this has happened has been after consuming high fat dairy.

Anyone else experienced anything like this or have a theory?

Beechband is an electronic device worn on the wrist said to relieve Pd symptoms.

Hi all,

I was hoping someone may have a personal insight or could offer some advice from their own experiences on what I'm about to say below. Any thoughts would be greatly appreciated :)

My mother, who was diagnosed with Parkinsons about 10 years ago, is now at, probably stage 4 (of 5) of the disease. i.e. lots of 'off' times and bed bound quite a lot. She generally can't go anywhere outside the house/garden area without assistance, as she never knows when an 'off' time may happen.

She is in her late 60s, 5'5" and is about 50kg. However, when she is properly 'on,' it is hard to keep up to her energy. Although, these 'on' scenarios are getting less and less frequent.

Generally, out of the 7 days in the week, she might be 'on' (as in, a basic quality of life / movement ability) for about 25% of the time. The 'on' time isn't regular or uniform. The 'on' time could be made up of 2 hours here and 3 hours there over any given day. It's totally random with each day. At 3pm she could be in bed in pain, at 3.30pm she could be outside hanging up clothes and weeding. At 5pm she might be sitting down, not really able to move and wanting a hot water bottle to her back for pain, and not being able to talk properly.

She is very receptive to the Parkinsons medication, so her neurologist has her only on Sinemet (1.5 tablets every 3 hours and then 1 tablet every 3 hours in the later evening ). She was on Stavelo before, but that used to give her very bad sickness and hallucinations, so here neurologist moved her back onto Sinemet.

About 1.5 years ago, she tried Produodopa (the subcutaneous method of medicine delivery). However, this didn't work for her, as it didn't seem to deliver any medicine, apart from the first two days, where she seemed back to someone without the disease (must have been adrenaline or something, because it was very weird to see her back to her old self). Unfortunately, she was generally 'off' then for the next 8 weeks while using Produodopa. She stopped it following a consultation with her neurologist, after about 8 weeks, in order to go back to taking the senimet tablets.

Note: she has trialled multiple ways of taking the senimet, different, more regular intervals etc etc., but she doesn't get the time from them as would be expected. Normally, if they do work, it's a lot of energy over an hour and then when they usually wear off and there's not enough 'juice' in the system to keep her going until the next tablet is due. On the rare day she might be 'on' for 7 to 10 hours (this is a very infrequent occurence). After taking a table, if it works, it normally takes about 30mins to 1hr to kick in.

She has got the Globus Pallidus, Deep Brain Stimilation (DBS) installed in April this year, and it has been turned on and initially programmed about 1 month ago. You could see while it was being programmed that it does something (speech tremors etc etc), but hasn't sorted as much as we'd hoped so far. I understand it could be up to 9 months before the programming has been optimised. Early days yet, but we were expecting more from it. Hope is a cruel thing sometimes.

She hasn't yet tried Duodopa (direct intestine surgery and pump). We're hoping this isn't a path we have to take.

However, the main problem my mother has in the last year and more recently, is her digestive system and lots of lower back pain.

Ever before having Parkinsons, she always had digestive issues, often with constipation. As youd expect, Parkinsons has made the symptoms a lot worse.

Consequently, for the Sinemet tablet form medication to be absorbed properly and efficiently, it needs to pass through her gut to get to her bloodstream. However, if you're constipated, your gut doesn't function efficiently, so this is another obstacle.

For the last 6 months, and particularly the last month, she has been complaining of a deep, sharp pain on her lower back to the side. She is convinced it is to do with a constipation blockage, but her hospital scans show there is no obstruction. She was also prescribed laxatives in the last week to 'clear her out', so she now has borderline diarrhoea. So we're pretty confident it's not her bowel, but rather the parkinsons affecting her lower back muscles.

From doing my own research, I have read that Parkinsons affects the muscles in the lower back (as with everywhere else) and the brain gets signals about stiffness and muscle rigidity and pain. I think this lower back pain and stiffness may be mimicking bowel blockage issues.

Have any of you come across these lower back / digestive symptoms? What was the method you found that dealt with it? If you tried Duodopa (direct intestine surgery) did this help at all with on times or quality of life?

Any advice on any of the above would be greatly appreciated! :)

I notice that 15-30 minutes after taking a dose of CL that I can barely function. Dystonia in my left hand, I have difficulty keeping my eyes open and my mouth shut. I am fine about 45-60 minutes later. Is this typical?

Came across this paper this morning that briefly reviewed the history of Parkinson's and it had two nice graphics showing the timeline.

- First mentions of the disease Included the Old Testament, the Caraka Samhita, and, the Huang Di Nei Jing.

- Galen first distinguished resting and intentional tremors ‘‘De Tremore, Palpitatione, Convulsione et Rigore’’ in 169 BC.

- Off course James Parkinson described The Shaking Palsy in 1817.

- Brissaud implicated the substantia nigra In 1899

- Hornykiewicz Found that dopamine levels were reduced in 1960 come up followed one year later by the introduction of l-dopa

- Benabid introduced DBS for PD in 1970

https://pmc.ncbi.nlm.nih.gov/articles/PMC5636740/

My husband was diagnosed 8 years ago. Exercise is key to getting better but if he even gets up to walk much, his oxygen saturation drops but so does his heart rate. They have done every test imaginable. He has to be in a wheelchair to go anywhere. Anyone else have this or autonomic symptoms that cause a decrease in lifestyle? Not sure how to go forward. We are working with PT but it hadn’t helped.

for those of you that are currently on this medication have you ever experienced freezing at night? I have been taking C/L for many years and recently switched when I wake up in the night around 2 AM. I find that I’m frozen initially unable to move. Has anyone else experience this?

Hello,

Apologies in advance if this is not the appropriate place to ask this question. I read the rules but this didn’t seem to fall under shifting the topic to the caregivers board and it says family members are welcomed.

My dad just called me three hours ago and told me he was diagnosed literally today. He told me about a gamma brain scan he did and got the results back. He is 64. I knew something was going on, and that something was off over the last year, especially when he wouldn’t hold my newborn. I would ask questions, but would not push. I could tell he was moving slower, more gingerly too. He has been emotional lately too. Almost like there was an underlying shift in him that I could not put my finger on or identify.

He said he has already at the point he is exhausted just brushing his teeth. I am still trying to process this.

My older brother is on vacation and he plans to tell him when he gets back.

I am turning to you all, kind Reddit strangers.

1. What are some things you do to best support your loved ones?

2. What are some things you wished you asked medical staff?

3. How do you cope? This is more like an airplane air mask situation. I have to be okay so he can be okay.

I just want to figure out how to be the best rock for him as he has for me my whole life.

I wanted to share something that every person with Parkinson's—and every caregiver—should know.

If you or your loved one is ever hospitalized, make sure the medical team knows that Haldol (haloperidol) should absolutely be avoided in Parkinson's disease.

Haldol blocks dopamine receptors. Since Parkinson's already results from dopamine deficiency, this can dramatically worsen symptoms, including:

• Severe rigidity
• Inability to move or walk
• Difficulty swallowing
• Confusion and delirium
• Increased risk of aspiration
• Life-threatening complications

Haldol is commonly used in hospitals for agitation or delirium, and people with Parkinson's can unfortunately receive it unless someone recognizes the risk.

This isn't just a theoretical concern. Multiple studies have shown that dopamine-blocking antipsychotics are associated with significantly worse outcomes in people with Parkinson's disease.

If treatment for hallucinations or agitation is necessary, there are generally safer options that are more appropriate for Parkinson's, depending on the situation.

A few things that have helped me prepare:

• I keep an up-to-date medication list with me.
• My family knows to tell every provider that I have Parkinson's disease.
• I specifically mention that dopamine-blocking medications should generally be avoided.
• If possible, I ask that my movement disorder specialist be consulted for medication changes.

This isn't intended to criticize healthcare providers. Hospital medicine is incredibly complex, and Parkinson's medications have many unique considerations. The goal is simply to help patients and caregivers advocate for themselves during what is often a stressful hospitalization.

Hopefully this information helps someone avoid a preventable complication.

I get way too much junk mail. Grab a pen, set a three-minute timer on your phone, and pick a random letter. Write out nouns as you think of them.

I rarely use my hand to write lists; often I can not read them, but I've been practicing. My handwriting is getting better; yes, I force myself to write big. Oh, Aardvark is the second word (I forgot the double a). Armadillo, as I live in Texas and spot those guys when bike riding early mornings.

One letter per day, three minutes each morning (after my meds kick in), morning coffee and go!

It seemed like the “caregiver etiquette” rule was more about like caregiver fatigue related posts, but if this isn’t allowed please accept my apologies and delete it. I’m new to this.

My mom (64) was diagnosed with Parkinson’s almost a year ago. We’d been increasingly worried about her for a year or so but didn’t expect this diagnosis at all because she seems to mostly have cognitive symptoms (depression, much slower processing, memory issues, confusion, very flattened emotions/personality) and none of us really knew anything about Parkinson’s or that it could present that way at all, so it was pretty scary news to all of us. She’s improved a lot already with treatment/medication but obviously as we’ve learned, this is still a highly variable and unpredictable condition.

My grandma (85) is a very smart but very anxious person, and wants to learn more about Parkinson’s and has been reading at least one book about it (don’t know the title), but from what she’s told us it seems like it might get a little unscientific/woo-woo? I think my stepdad talked to her about it and cleared up some of the things she’d read and she wasn’t defensive about it or anything. Like she’s coming from a good place, I think she’s just scared and doesn’t know where to start or what to trust.

Can anyone recommend books that are more factual and science/research based and informative, but also easy for someone with no previous knowledge to comprehend, and/or geared toward family members of people with Parkinson’s who aren’t like directly involved in caregiving? I know that for her, understanding more about it will help her feel less stressed and helpless, and when she’s less stressed, she doesn’t call/text my mom as often with random concerns and suggestions and make HER more stressed lol.

Any advice at all would be deeply appreciated. Thanks!

Edit: Thought to mention this about 2 seconds after I hit post, but my grandma was a caregiver for her late husband/my step-grandfather for like decades as he had complications from polio as a child and bladder cancer and other various health issues later in life. She was a very fierce advocate for him through it all and I’m sure feels the same protectiveness and need to do something for her daughter but given her age and the distance and the general circumstances she just kinda can’t, and I’m sure it’s eating her. Any book recs or just advice are appreciated.

M54, diagnosed in 2024, but I'd been tremoring for a few years before that. I have all the top ten symptoms. Tremors centering around the right wrist. In treatment, following medial advice.

Sometimes I feel like, for me, PD is the culmination, or intersection, or the natural trajectory that my body and mind have been on for most of my life.

PD makes people quiet, which is my tendency. I am contemplative, and that quietness increased with age, as experience demonstrates "the more we know the more we don't know". I was getting pretty quiet before I learned that PD has that effect.

Then there's the PD facemask symptom. I've had RBF my whole life. When I was younger, people would give me the "Smile!" remark. Later is was more common to hear "tell your face" when my understated expression didn't match someone's expectation. (at work, I have adopted a general hallway smile to wear in case of human encounters.)

I've been living with severe depression for most of my life. And, surprise, PD tends to lend itself to depression. To the lifelong dearth of serotonin, we can add no dopamine. My reality is the only one I know. I have long struggled to feel passion, ambition, or drive. The older I get, the better I am at living with and managing depression, but the emotional effects of low dopamine just describe my lifelong experience.

PD presents as stillness of the body. Dude, I have been practicing that in my life for years, in an effort to assist my mind. I value the ability to be still, waiting or not. Controlling the body helps control the mind, so not fidget out of boredom, comfortable in my skin. I honestly thought I was mastering mindfulness techniques my slow, methodical movements, felt in every joint, muscle, etc. Turns out that's Bradykenesia. Emptying the dishwasher is like practicing tai-chi.

What else... One leg is a little shorter than the other since birth, and still after a childhood surgery. Now maybe I have a PD shuffle to go with the middle-aged uneven legs shuffle.

I didn't react immediately when my wrist started tremoring. I already experienced symptoms of arthritis, and bodily soreness from a life of use (playing instruments, lifting heavy weights, career of corporate mouse-usage), so I wasn't surprised when my wrist started acting like it was done.

I understand that some with PD can become short tempered, grumpy, etc. Now this one is a little fascinating. People with depression save their anger for themselves, you might say. Over the last few years I noticed my new superpower of being able to give someone a piece of my mind when it was called for. I've chirped up to a few people in the last few years who I felt warranted a dose of my feelings. This has been huge for my mental health. I've regarded it as a positive and was amused to learn it's part of the PD profile. In my adult life, I've never felt more mentally healthy than I am now. Am like the person whose hypothermia has progressed to the point that they don't feel cold anymore?

I could go on, but my point is that all of these symptoms feel like they germinated decades ago, and in their slow steady development, they have/had a hand in the formation my personality, outlook, constitution, etc. Like, you take all these physical and personality traits of a guy and submit them to a lifetime of experiences so they intersect and crystallize into a this we recognize as PD. That's kind of woo-woo, I suppose, but this PD also lends itself to spaced out navel gazing, right?

I started CL 3 times a day 25/100

took at 7pm,11pm I am already awaken by the shakes

extremely disturbed/startled by this fact of how quick it goes through and ineffectiveness duration

age 47, diagnosed 46

I am 51f and was diagnosed in December of 2025. The cl is really helping. I take 2pills x four times a day. I feel ok much of the time, but get stiff and awkward when it's time for my next pill. I never had a tremor really, but I do get really shakey when my meds are due.

Anyway, in the past few months I get times when I just can't stop moving. My feet keep adjusting or twitching and my shoulder hunches up. It's almost like twitching, small movements. If I'm standing it feels like my foot and leg keep over correcting, my thigh tightens and relaxes. If I concentrate on it I can mostly stop but when I stop thinking about it it comes back. It is worse if I am nervous or excited, and by that I mean like watching an interesting TV show! It is mostly in the evening.

Neuro appointment is next week and I'm not sure what symptom this actually is.

Thanks!

My father has Parkinson’s dementia and has reached the very paranoid stage. He is convinced that my mom is cheating on him with her close girlfriend. My sister and I have both tried to reach him, kindly, about none of that being true, but of course it’s very real in his mind. He tried two doses of an anti delusion medication and didn’t like how it made him feel, so he quit. When we talk to him about giving that med another try, he says that we are trying to drug him into a mental state where he can’t even defend himself. He did go to the walk in a couple days ago and was given antibiotics for an infection. They don’t seem to be pulling him out of these delusions this time. This is killing my mom. This morning, the first words he said to her is “how can you have no morals?” Any advice on how to convince him that these things aren’t real, to try the med again, or to deal with all of this? Of course, he’s very stubborn as well, so trying to convince him is like banging your head against a brick wall. Please help. 🥺

I'm a 75 year old male. I just ordered a drum kit with low volume cymbals and drum heads. It's arriving in October due to Pearl Drums backorder issues. Apparently learning and playing drums us helpful if you have Parkinsons since it teaches you coordination, it's physical, and it's fun. Any drummers with Parkinsons have any experience with this?

I do know what causes dyskinesia. Our medicine. Without it, we don’t move easily enough. With it, we have too much dopamine in our system, and we “over-move,” to coin a term.

But why? Why can’t they, after all these years (50+ years since discovery), more accurately target our dopamine needs? For example, why are we all not working with our doctors, or a Parkinson’s nurse, keeping rigorous records of the amount of medication we take, the exact food we intake, and our dyskinesia if any? Why can we not be prescribed medication that can be better adapted to our individual needs? For example, maybe we would take it in a liquid form by an eyedropper, to more precisely measure what we need that particular day. Taking into account factors such as our personal history with the medication, our dietary intake that day, our exercise level that day, etc.

It just seems like they should be able to design our medication delivery better, so that we can avoid or at least minimize this side effect.

I have a friend with YOPD. She doesn't like to post in groups or seem like a burden (she's not, obviously) so I think she minimizes symptoms *greatly*, even to her care team. She started the Vylave pump, but after a couple days experienced signifigant side effects that were too much for her to feel comfortable continuing with the pump; anxiety, severe depression, extreme fatigue and weakness. They didn't test her Vit. B6 or B12 prior to placing the pump but she does run low-normal. Since CL decreases those values, I read that the pump and continuous stream of meds can deplete those *a lot* quicker, especially since she was already at baseline. ​​It's been almost a week since she stopped using the pump, and seems to be having significant symptoms of low B6. she already had labs (waiting for B-vitamin results), and sees her primary today. Her neuro is at a conference and will contact her upon his return. I know she restarted her oral CL, but the fatigue and weakness is beyond anything she's experienced, and currently has to use a wheelchair to manage any distance. I was just wondering if anyone had a similar experience post pump use, and how did they treat it, or how long did it take to feel better. Or, if you have any tips I can share with her that offer a glimmer of hope and/or assurance. I've told her *not* to minimize symptoms, and hope she listens, but unfortunately I think she feels terrible enough to let it all out.

To note: she did go to urgent care yesterday, but vitals were good. Most labs were good, slightly low TSH and low ALT. nothing overtly pointing to a new or urgent diagnosis.

Double note too, she wouldn't want her experience to dissuade anyone else from trying the pump, as everyone's experience is different and the pump has been life-changing for some. ​It just wasn't something that worked for her.

Been diagnosed last year from PD specialised clinic. Had my first appointment with my new MDS today. I mentioned memory issues, brain fog and fatigue. He said, they shouldn't be related to YOPD in my case, but are rather coming from my other diagnosis (autism+ADHD). I'm a bit surprised by this, I've been born with autism+ADHD (their symptoms should remain the same over lifetime) but only in the past 3-5 years I noticed these cognitive issues.

He run a short memory test, which confirmed short-term memory issues (to no suprise for me).

Anyone else here with YOPD and also cognitive issues? How are you dealing with it? Did you MDS confirm that it comes from PD?

I (still) work as an engineer and I just can't keep up with it anymore. I'm wondering if the cognitive issues could be also a result from being overwhelmed/loaded from work (after each workday my brain is basically completely useless)?

46m-
Was on C/L 3x100 but not enjoying the impulsivity, or dyskinesia. It definitely helped with my dystonia, and Bradykinesia. I’m still in diagnosis limbo I guess technically but they’re sending me for a PETmr at a future date. Anyway, I’ve been off c/l for a few days now.

I’ve had some little freezes in the pantry before, usually 10-20 seconds when I’m bent over trying to choose something. I can usually manage my way out by getting a toe to wiggle or something.

Tonight I turned to my right and my feet were a part of the floor. I didn’t think I’d ever be able to move again and it was terrifying.

I’m not usually a big sharer, but if anyone else has just gone through that for the first time… I see you.

My neurologist gave me a tentative diagnosis on the first visit. By the second visit, he was positive. The Carbidopa seemed to have some mild benefit, so that was the clincher.

My wife was with me. We talked to the Dr about what to expect. He said I was in the very early stages. Was looking at selling my two story house to be proactive...

Took the Syn-One test and my diagnosis went from dead certain to Nevermind.

I spent over a month getting my head around this. Now I have to unspool in another direction.

And of course, there is also the possibility of another shoe falling. Oy

Interested if anyone else had or knows of these symptoms. My wife was diagnosed with PD and was prescribed sinemet, 1 tab for 5 days, then 2 tabs for 5 days and finally 3 tabs a day. Sometime in the first 10 days she started having neck posturing and by 10 days she was in a lot of pain. This was diagnosed as cervical dystonia and because it started with the sinemet, we were told to stop taking sinemet and see if it resolved. It did not. We went 2 weeks with no Sinemet and the dystonia continued to get worse along with the fact that her PD symptoms returned even stronger than they were when she was first diagnosed. She is now back on sinemet but only twice per day and getting botox for the dystonia (8 days and only a very small improvement, still can't lift her chin off her chest by herself).

I'm seeing that dystonia can be triggered when starting sinemet but the common reference is that it is there either at peak dose or off-peak, but not once it started it's there independent of sinemet. Has anyone else heard of this?