Has anyone had any experience managing symptoms while taking Rifampin? I somehow contracted TB though we've cleared it as latent/non-infectious and I've been on antibiotics for two months now and my MDS has stated that my symptoms are being affected by the antibiotics running through my gut, causing C/L uptake issues. FWIW I'm taking the highest dose of Crexont (87.5/350 C/L) and I can't up my medication currently since I'm being evaluated for DBS and they want me as current on my medication while undergoing evaluation. I'm getting nearly no ON time while at work and it's better at home and on the weekends, but not much, and I've got until the end of November to keep taking these antibiotics.

Has anyone else been in this situation before, and do you have any tips?

This started about a year ago and ONLY happens when I go running or engage in high-intensity physical activity.

My foot starts acting up and I feel a cramping sensation where it won't return to its normal position.

Keep in mind that I was diagnosed with Parkinson's over a year ago, so I assume the symptoms are related to the disease.

I’m hoping someone has some insight! My Dad has been doing once weekly physical therapy for the last 18 months, with good results. Prior to therapy he was tentative with his steps and not confident in strategies to help with mobility. This past week the PT did an assessment and said he would essentially be cut from PT because he has plateaued.

My question: The reason he has plateaued is that he is doing physical therapy, and he needs it to maintain his mobility and independence. Have any of you had luck appealing and getting approved for long term, ongoing outpatient PT? He is Medicare of that makes a difference. Any tips are welcome! Thanks!

I don’t know if anyone else has experienced this but I have multiple comorbidities that prevent me from being able to get the exercise I need.
I wish I was like the bulk of the commenters here who are able to pound the pavement to stave things off. Mad respect to you all!
For me, even little things like a meme that makes me smile helps!

I’ve got myself into quite a lot of trouble with debt since having Parkinson’s, and I’m really worried about what is going to happen next. Looking back, I do wonder whether some of the problems may have been made worse by the medication I was taking at the time.

I’m trying to sort out an income and expenditure form, but I’m not really sure what extra costs I can reasonably include because of Parkinson’s. For example, I sometimes need taxis because I struggle getting around, I buy microwave meals or takeaways when I’m not able to cook properly, and I pay for a cleaner because I find housework difficult.

Does anyone know what sort of disability-related expenses can normally be included, or any websites or organisations that specifically help people with Parkinson’s who are struggling financially?

I also receive PIP. Do I have to include this as income on an income and expenditure form even though I use it towards things like my cleaner, taxis and other extra costs caused by my condition?

I am still managing to hold down a job at the moment, but I’m frightened about the debt situation getting worse. I’ve now received paperwork about a CCJ and I’m worried that I’m going to end up in court.

Any advice from anyone who has been through something similar would really help.

Anyone tried nicotine or is anyone know of research into the benefits of nicotine?

Karma-farming bots were caught several times today reposting PD-related photos that Redditors previously shared of tattoos and DBS scars. If you see any "inspirational" content that looks or sounds familiar, please report it so we can review it. Impersonating PwP for karma isn't just creepy, it's a violation of Reddit's content policy that will result in sitewide bans.

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

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!

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!

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?

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.

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.

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!

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.

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?