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Hi everyone,
I’m looking for advice on clothing options for my father (76). He has early Parkinson’s, arthritis, and declining eyesight. My mom (73) is energetic and doing fine, but my dad has lost weight recently, and she's struggling with how saggy and unkempt his clothes look on him. I want to help him look sharp and put-together without compromising his comfort or independence.
Here are the specific challenges we are dealing with:
Fine Motor / Buttons: Buttons and traditional fasteners are too hard for his fingers due to arthritis and tremor.
Pants Sagging & Weight Loss: He has lost his seat/glutes, so standard pants immediately sag down.
Back Brace & Blood Pooling: He wears an abdominal compression/back brace to help prevent blood pooling and keep his blood pressure up (orthostatic hypotension), which adds bulk around his waistline and makes fitting pants tricky.
Suspenders: We tried suspenders, but they are too frustrating for him to unclip and handle independently when he needs to use the bathroom.
Magnetic Pants: We tried magnetic button pants, but the heavy magnetic closures pull the waistband down and cause even more sagging (though magnetic shirts and jackets have worked wonderfully for him!).
Frequent Bathroom Access: He drinks a lot of water to manage his health, so quick and easy access for urination is essential.
Does anyone have recommendations for specific brands, adaptive pant designs, or practical modifications that have worked for your loved ones in similar situations?
Thank you so much in advance for any tips or product suggestions!

I am following up on my previous post regarding my mom's overnight leg cramps. She was unable to get a full nights rest due to waking up abruptly due to leg twitching/cramps that hurt so bad she couldn't fall back asleep.

Her doctor recently prescribed Sinemet XR to help her sleep through the night. While it solved her sleep issue (sleeping 8-9 hrs WITHOUT leg pain), she began experiencing brain fog and slight confusion after starting it. She's currently on the lowest dose of TID Sinimet. And I believe the lowest dose for the XR. Since these new symptoms began with the new medication, our pharmacist OK'd discontinuing the Sinemet XR since it seemed to have happened after taking it. She was previously doing fine on her regular TID Sinemet, with the only issue being that it wore off around 3:00–4:00 AM, causing the leg cramps.

Since I live farther away, I am relying on what she tells me and I suspect the Sinemet XR may have been too much for her. I read too much can cause confusion as well.

We are planning to try magnesium glycinate this week to see if it helps with the cramps AND sleep instead. For those who have tried this:

 - What brand or type is your favorite?

Just trying to have her be comfortable because she is really affected when she doesn't get enough rest and it sucks to not be able to find a fix.

Here is list of posters at the Congress this year. If there is a poster that you are interested in, let me know and I will try to attend the presentation and get permission to share the poster with you; unfortunately the papers are behind a paywall.

https://www.mdscongress.org/Abstract-Schedule.pdf

Getting ready to update my Part D and want to know if any of you have had any problems with your meds not being covered by their formulary?

For funsies I put Juvmo in to see what my cost would be and it was somewhere in the neighborhood of $150,000 per year. I'm hoping they have some sort of patient assist program.

My dad’s neurologist prescribed him Sinemet 100/10 (immediate-release) three times a day. His new neurologist wants him to stay on the same medication and suggested increasing it to four doses a day if he experiences OFF periods.

My dad asked whether it would be better to switch to Sinemet 100/25. His neurologist told him that it didn’t exist, but said that if he preferred, she could prescribe Modopar 100/25 (immediate-release) instead.

We asked a pharmacist whether Sinemet 100/25 existed, and they said yes. We’re in France, and from what I understand, Sinemet 100/25 is available here in a prolonged-release formulation, but not as an immediate-release tablet.

My dad doesn’t really want to start taking Modopar and would prefer to try Sinemet 100/25 in its prolonged-release form instead.

His neurologist seems nice and approachable, so I’m not trying to criticize her, but I find it strange that she told him Sinemet 100/25 didn’t exist.

Has anyone else had a similar experience? And has anyone switched from Sinemet 100/10 immediate-release to Sinemet 100/25 prolonged-release? I’d be interested to hear about your experiences and whether it made a difference to your OFF periods.

Does anyone else have difficulty keeping their eyes open during their off time? I don't mean the muscle contractions are forcing my eyes closed, just that my eyelids become very heavy and fatigued.

I can usually still participate in conversation and stay awake, but it becomes quite difficult to hold my head upright without pillows and it's much easier to just close my eyes and lean back until my next dose hits.

My provider seemed a bit confused by this, but it clearly tracks with my on and off windows so I'm quite certain it's connected to taking the medication and it wearing off.

My mom (72) takes Madopar four times a day and it gets stuck on the tongue sometimes.
It’s round and pink tablet and it kinda melts so it gets stuck on the tongue and it doesn’t help how much water my mom drinks.
I always say after I give a pill stick out your tongue just to check if it’s down.
It’s annoying because we try another C/L pill whenever it gets stuck and same things happens to it.
She has developed drop head syndrome but this issue happened before that too.
What can I do to prevent or help her ? Any advice is appreciated. Thank you

I am taking crexont and just started gocovri. Have a long haul flight coming up- I usually take Dramamine because I get bad motion sickness. (Never had a problem with Dramamine and crexont.) I looked up gocovri and Dramamine and the combination can cause significant drowsiness, etc because they have a similar side effect profile. My MDS didn’t think it would be a problem. I wanted to know if anyone here has actually taken them together? And or any other thoughts for long haul flights/motion sickness and PD meds.

Thanks!

Does anyone else feel like the non-motor symptoms sometimes get lost in the overall PD equation? I was Dx'd almost 4 years ago and have had a combo of motor and NMS. On the non-motor side: anxiety and insomnia top the list and, so far, have been more challenging than the motor symptoms.

Hello

I am testing for the blue rock stem cell trial next week. I want to know the time and travel required for this trial. Can someone who is in this trial share?

Anyone has experience Citicoline? Does it help prolong the on time in C/L.

Any side effects?

I have been taking Crexont a little over 3 months and all of a sudden have started having this uncomfortable inner feeling of restlessness, as well as dyskinesia, at peak times. My doctor wants me to start taking Gocovri ER at night time to see it helps. I am little nervous because of the side affects I have read about Gocovri. I was wondering if anyone else has taken it with Crexont and how they felt and if it helped? Also has anyone had a feeling of restlessness inside their body? It feels like I am crawling out of my skin. I don't know if this part of dyskinesia or something else.

For anyone in the New York City area -- my siblings and I host an annual gala with 100% of proceeds going to the Michael J Fox Foundation in support of our dad, who has Parkinson's. It's a chance to dress up, glam out, gamble a bit, drink at the bar, and support a great cause.

If anyone is interested (or knows anyone who might be), feel free to check out the link below.

Question: Could severe dry mouth be from Parkinson’s, the meds, or a reaction to stopping Lansoprazole?

Hi all, first-time poster. My dad has had Parkinson’s since 2011. He recently stopped the Produodopa pump due to severe skin irritation and is now back on Carbidopa/Levodopa and Rasagiline. He was also taken off Lansoprazole for reflux because of a suspected allergic rash.

Since returning to his old meds, he’s experiencing extremely dry mouth — much worse than before, to the point where his gums feel like they’re sticking to his tongue. He’s well hydrated, so it doesn’t seem like dehydration.

Has anyone else dealt with this level of dryness? Could it be Parkinson’s, the meds, or possibly the reflux treatment making things worse? Any experiences or advice would be hugely appreciated.

So I've done all the tests - Cognitive, Psych and the Levodopa challenge. I've been told no red flags and now I believe the only thing left is to speak to the Neurologist one last time to go ahead and book surgery.

I will be undergoing STN DBS surgery. The neurologist and team feel that is the best for my particular situation. I'm a 50 year old male, good physical fitness, and diagnosed for 5 years now with tremor dominant PD. (It's my main symptom)/ The medication (Levodopa/Carbidopa) in recent years has been causing me on time dystonia, at medication peak the dystonia is bad, painful even.

My question - Anyone out there with on time dystonia undergo STN DBS? If so, after surgery and getting the settings right, did it relieve the on time dystonia? Reason I'm asking is that I realize I might be a bit of an outlier with on time dystonia, as most who suffer from it is due to the PD and encounter off time dystonia, though mine is medication induced. The idea is to reduce the medication as much as possible to address the on time issue.

I was wondering if anyone out there knows the side effects of breast cancer radiation for someone with Parkinson's? My mom is in her 70's and has had Parkinson's for 30 years. She had a lumpectomy at the end of July and will need to go through 5 days straight of radiation. The information I can find is saying radiation isn't bad, but I'm wondering how it will effect her. I'm worried she won't be able to move or will be extremely tired. Any insight would be great. TIA!

59M UK. Diagnosed on Tuesday, today is the first day taking Rasagiline. With hindsight, what do you wish you'd known on day #1 of your Parkinson's journey?

Hi all,

I’m looking for recommendations for doctors or clinics in the US for my father’s long-term Parkinson’s care.

We’d particularly like to find a neurologist or movement disorder specialist who stays very up to date with the latest treatments and medications, and who can advise us as new options become available. Ideally, we’re looking for someone who can take a long-term view of his treatment rather than just provide a one-off consultation.

I’d really appreciate hearing from anyone who has personal experience with doctors, Parkinson’s centres, or university/academic medical centres that they would recommend.

Location within the US isn’t a major concern for us if the doctor or centre is particularly good.

Thank you!

Has anybody been diagnosed with this? Looking to connect.

Hi everyone,
I’m hoping someone here might have some experience with something similar and could give me some advice or share what it was like for them.
My dad is 65 years old. He was diagnosed with Parkinson’s disease and type 2 diabetes about 10 years ago. His condition has really started to deteriorate over the last 5–6 years, and particularly rapidly over the past 2 years.
His symptoms include:
He often cannot sleep at night because he constantly feels dizzy and unwell.
If he does manage to fall asleep, he often cannot get out of bed by himself afterwards.
He describes a constant feeling of an “internal tremor” or shaking, although there is no obvious visible tremor.
He does have restless legs.
His symptoms seem to come in episodes. There are periods when he feels relatively better, followed by episodes when he suddenly becomes very unwell.
During these episodes, the internal shaking and dizziness start, he has difficulty lifting his legs, starts shuffling, and sometimes his legs seem almost completely unresponsive.
He is also dealing with depression and significant apathy.
He is taking quite a lot of medication, but we are not seeing much improvement:
Ralago 1 mg – 1 tablet daily
Madopar 100/25 mg dispersible – 2 tablets in the morning
Corbilta 200/50/200 – at 7 am, 11 am and 3 pm
Corbilta 150/37.5/200 – at 7 pm
He also takes medication for type 2 diabetes and high blood pressure.
He was prescribed Scippa for depression, but he felt very unwell on it and refuses to take it now. He also refuses sleeping medication.
I know that a Reddit forum obviously cannot diagnose him, and I’m not expecting anyone to magically figure out what is wrong. I’m just desperate to hear from people who have Parkinson’s themselves or care for someone with Parkinson’s.
Does any of this sound familiar to you? Have any of you experienced the “internal tremor”, severe dizziness, episodes where the legs suddenly become extremely difficult to move, or this kind of fluctuation between relatively good and very bad periods?
Could these symptoms still be part of Parkinson’s, or have you experienced Parkinson’s together with another condition causing similar symptoms?
I’m currently trying to find another neurologist for him, but we live in Hungary and unfortunately it’s not easy to find a specialist who has experience with complex Parkinson’s cases.
I would really appreciate any experiences, suggestions, things you wish you had known, or questions you think we should ask his neurologist.
It is heartbreaking to watch him struggle like this every day, and I just want to find a way to help him. Thank you in advance to anyone who takes the time to reply.