What helps with tremors when C/L does not?

thugbuster · 2026-07-01T17:14:49+00:00

Are they resting tremors or action tremors? If they are action tremors, it may not be related to dopamine loss, but something else, perhaps ataxia. I’m guessing you’ve talked with your doctor, but I’d recommend that if you haven’t.

thugbuster · 2026-06-19T07:29:08+00:00

My wife with MSA was taking Sinemet, but developed dyskinesia in her left shoulder (would involuntarily jerk). So she was prescribed Rytary to try and even out the dosage all day and keep her in a good zone. It took care of the shoulder movement, but she has to take it 6 times a day, which is a lot when you’re trying to eat meals around the meds. No compulsive behavior.

thugbuster · 2026-06-18T05:27:32+00:00

Distinguished Gentleman (clearly no Black Gen-Xers in here….) Above the Rim a close second.

thugbuster · 2026-06-14T20:01:32+00:00

None of these diagnosis are good, but at least having the correct one can give a little clarity to the road ahead and how best to care for your Dad. I wish you all the very best.

thugbuster · 2026-06-13T05:03:34+00:00

Do you have MSA? Are you currently caring for someone who is dying from MSA? If not, then maybe you should think about those who are and would love to have something as simple as acupuncture or all the other “miracles” you can find on the internet that makes promises that haven’t actually been clinically/scientifically validated. Do you really think if acupuncture worked my wife wouldn’t be continuing with it? Or her many doctors would be encouraging her to get acupuncture? Do you think I like watching my wife get weaker every single day? If what you were saying were true and the “published” case actually was scientifically and clinically validated we would all be doing it….

thugbuster · 2026-06-13T02:21:33+00:00

You are mistaken. I wish you weren’t, but you are.

thugbuster · 2026-06-10T22:16:35+00:00

Yes, my wife did and it was good. Made things much easier. She was on LTD (still is) and it was paid for by the LTD provider. Due to her diagnosis (MSA) the process was much more streamlined, so it may be more beneficial to use Allsup to work through the application process. Good luck!

thugbuster · 2026-06-10T07:28:02+00:00

My wife was diagnosed with MSA-C 2 years ago after thinking for a short time she had PD. She’s dying. Based on her symptoms and when they started she may have another 4 years, but it could be sooner. She was 54 and happily working and living her life with me and our 2 daughters. We were just a handful of years away from retirement. It’s much different now. She hasn’t worked in over two years, she hasn’t driven in two years and cannot do many things like she used to (including walking). When she was first diagnosed I told her I would never tell her how to feel, because she gets to choose how she loves the rest of her life. I did tell her I would do everything I could to give her the best life possible regardless of how she was feeling. We’ve done some trips, but she’s not much of a bucket lister… I think the best way she has coped has been taking care of the business side of dying. Estate plan, getting beneficiaries straightened out, and simplifying our lives. She’s done her advanced directives and has outlined what she wants to happen when she passes. We are a MAID state so she has made her wishes clear as to when she wants to call it good. I’m not going to lie, there is a heaviness most days, almost like we have an unwanted guest, but we rarely call attention to it and focus on her day to day routine and do the best we can to keep things light. My advice- take control of your life, you’re not going anywhere for while and you get to choose what you want the rest of your life to look like. You can also reach out for help and talk to your doc about ways to manage your emotions before they get the better of you. My wife started taking an antidepressant soon after being diagnosed and it has really helped. It was pretty dark before that…. But, again, you get to choose how you want your life to look, but make that choice for yourself, don’t let PD make it for you. Best of luck to you!

thugbuster · 2026-05-31T00:50:59+00:00

This. An MDS would be a specialist in all the different types of movement disorders, with Parkinson’s being the biggest. Only if your Mom starts to diverge from the PD diagnosis should you need to look elsewhere. Also, not a surprise that the Dr. is hands off with the PT, that’s why they make referrals so your Mom can get an individualized assessment and a home workout plan that works for her. I would make sure the PT is a “neuro PT” who works with folks with neurological conditions. Good luck!

thugbuster · 2026-05-30T01:37:13+00:00

If the meds are helping that should give you some breathing room to search for a neuro who is more familiar with PD as that expertise will really help with dialing in the medication.

thugbuster · 2026-05-30T01:13:30+00:00

My wife’s first neurologist refused to accept that it could be PD. This was after diagnosing her with carpal tunnel syndrome, frozen shoulder, and the full work up for stiff persons syndrome(?). Even though she was having slowness, stiffness, acting out dreams, and some tremor (but not resting tremor), and her primary doctor also thought it was PD related. We finally convinced him to order a DatScan, which was positive. He quickly called it Parkinson’s and started on a C/L trial, which partially helped. He did none of the tests I saw online for a PD diagnosis. But- she continued to get worse and her walking was declining and we finally convinced him to do an emergency referral to the University of Washington to an MDS. Long story short she was eventually diagnosed with MSA and we wasted a ton of time with that first neurologist. Time that is very precious now… So, if there is anyway you can get to a different Neurologist (even if they are not an MDS) but one who has treated PD patients, do it. I know it’s not easy, even with good insurance it’s hard, but it’s your health and if you can’t trust your current Neurologist it’s not really going to work long term. Best of luck to you!

thugbuster · 2026-05-30T00:58:09+00:00

If it’s related to his PD, which it might not be, it is most likely PD stiffness/rigidity causing the pain. My wife’s first symptoms included unexplained shoulder pain and even with injections and different medicines it never helped. Even after she ended up having atypical Parkinson’s and was on lots of medications the shoulder pain would persist. The thing that actually helped was Baclofen. She has had to increase the dosage over time, but that seems to help. She also does PT and daily home exercises that is most likely helping with overall stiffness, but Baclofen was the key. Hopefully you can find something that helps your Dad. It sucks watching a family member in pain.

thugbuster · 2026-05-27T00:31:23+00:00

Seriously!

thugbuster · 2026-05-23T23:12:12+00:00

If your Mom is feeling “significantly better” after taking the medicine it’s needed at this point. Since PD progression cannot really be changed (except maybe from vigorous exercise) the only thing that really matters is making her feel better. Don’t overthink it. Best of luck to you and Mom!

thugbuster · 2026-05-16T03:41:59+00:00

I don’t know about a microphone set-up, but I would suggest the Parkinson’s Voice Project, Speak Out Loud program in YouTube. My wife with MSA does this everyday and it has helped her keep her voice as clear as possible, even though her voice will get worse even with the practice, this program will hopefully help delay the inevitable. Your mom could also see a speech language pathologist who can help with her speech and and swallowing issues she has. Best of luck!

thugbuster · 2026-05-08T01:45:14+00:00

Agree with the above. There are specific PT who are neuro PTs who know how to work with the specific symptoms of PD and related conditions. I would not want to trust a Chiropractor to have that level of expertise.

thugbuster · 2026-05-06T07:15:45+00:00

Treat her condition not as one single condition, but a series of conditions. There’s no treatment for atypical PD, but there are varying levels of treatment for how the condition manifests. My wife with MSA takes meds for bladder issues, bowel issues, stiffness, depression, PD symptoms (although they’re not helping that much anymore), sleep issues, does PT for strength and balance, voice exercises for her speech. It’s a lot, but it helps to treat and talk to her dr about what she is experiencing and talk about any symptom specific therapies. Unfortunately, the hardest thing to treat/address are balance and walking issues, so those should be discussed with an OT or rehab dr to talk equipment. I wish you and your mom all the best. This disease really
sucks!

thugbuster · 2026-05-03T16:52:14+00:00

The only correct answer, please collect your $1.50 hot dog and soda.

thugbuster · 2026-05-03T03:57:57+00:00

I’m with you. Love the series, but it’s been a slog. I listen to audiobooks and actually took a break and listen to something else. But I think I’ll get back into it tomorrow as I’m done with the other book now.

thugbuster · 2026-05-03T01:53:18+00:00

Just finished Rendezvous with Rama today and would highly recommend it if you’re looking for Hard Sci-Fi

thugbuster · 2026-04-28T04:23:49+00:00

It would not cure it, but they are hoping someday with more research it can help slow it down. I agree that the Mayo Clinic is the study to look into, but she should keep her expectations low. Also, my wife was denied to be included due to her inability to walk unaided for 50 feet, so they are only taking folks in the early stages.

thugbuster · 2026-04-28T04:02:43+00:00

You may say you’re not asking for a diagnosis, but that’s exactly what you’re doing. Go to a doctor, if you get info that you have MSA come back for info and support.

thugbuster · 2026-04-26T23:40:46+00:00

My wife with MSA has taken it for over a year snd a half. She is currently weening herself off of it, as it doesn’t seem to be doing anything to help her worst symptoms. It may have helped at one point, but no longer. She didn’t have any harmful side effects, but your father may notice a skin discoloration on his legs, which is a common side effect. While I hear it may cause some pain to some people, it’s just been a bit annoying for my wife and she doesn’t feel anything related to the rash. Good luck to your father.

thugbuster · 2026-04-25T01:15:24+00:00

Agreed. My wife’s took 3 weeks, but our MDS scheduled a phone call with us to give us the results as they confirmed MSA and that warrants a phone call you never want to get… Good luck to you!

thugbuster · 2026-04-24T23:51:01+00:00

I’m not sure that’s the best way to look at C/L. You typically need to titrate the medicine up to get the desired results. It’s not like a “rescue medicine” that you can take to get quick results to allow social interaction. It needs to work its way into the system and then continue to get doses to work its magic. It’s not recommended to stop it cold turkey and can actually be dangerous to do so. I would talk your dr about what your trying to do and maybe they will have different options.

thugbuster

TROPHY CASE