Hello. I had a d bs procedure on the left side of my brain on friday. It was an amazing experience and a total success.

You are a very brave woman please keep your spirits high as you are.....I m really impressed ❤

Thanks for the update Michele. LOL I love it when the doctors get excited about our illnesses. It's like kids at the candy store. Thanks for the info about the amantadine. Looking forward to your update.

You are a lovely and very brave woman! Stay strong! A cure is just around the corner!

It definitely sucks to experience the side effects of the medication we have to take, but you are educating yourself and staying informed. If it helps at all, you eventually get used to the feeling after experiencing it a few times. And don’t worry about what others think about you. Your true friends will understand and accept you!

Your attitude is so refreshing. Thank you for sharing.

Sounds like you have a great MDS!! Observant and responsive 🙌 you’re so cute about being excited knowing the answer! And I’m with ya about walking funny, so be it 😊❤

Thank you for Sharing. God bless you!

Jeremy is correct - don't worry about when people notice the different symptoms. I was just starting a left hand tremor a few years ago that my PCP kept saying was just an Essential Tremor - she was wrong - and as I was going to my AA meetings, I was initially very concerned when people noticed, but over the last year now, I've gotten over it. People can't help but notice and if they feel the need to ask, I just tell them. Sometimes when I'm at a meeting with people that I haven't seen before, when I share, I'll just put it right out there and that makes it a non-issue! Keep up the good work in the posts & thanks to Jeremy too! God Bless.

Nice to see you! Long time my dear friend ❤ I am a little over 5yrs into my pd. I am having some bad diskensiA as of late. I am at 23 sinimet per day coupled with one entacopone each dose. So basically 7x per day. I have a phone consultation with the dbs surgeon May 31st, hopefully it doesn’t change. Was originally scheduled for May 1.

I have heard it said that the people living with the disease are the experts...I don't think I know more than my MDS but I sure know more than a lot of doctors. keep us posted!

Definitely dyskinesia. The Amantadine can be very helpful with that. Several of my clients have taken Gocovri, which is a long acting form, and it really helps their dyskinetic symptoms. Awesome that you have an MDS who is perceptive and listens to you!

Hi Michele, I just watched your ten short videos and they were all excellent (to be honest nine videos, your dating video is great for someone at that stage in their life...I'm on my 2nd marriage and we have been happily married for 44 years). As I listened to each of your videos, I was saying to my self "yep", "yes", "that's me"... I have PD and while I'm in my late 70s I want to say young onset (diagnosed in my early 70s) since I'm young at heart. I had the same PCP for over 20 years. He was like your PCP, so I now have a new PCP. The best part about changing PCP, I now also have a great MDS (he only sees patients one day a week...he teaches at UCSF school of Medicine). In one of your videos you mentioned that you are teaching yourself the piano (I'm doing the same thing {music is great for slowing the progression of PD}). Please try to stay out of the hospital. So many nurses don't know or care about the timing of our medications. I for one always look at the bright side. Here's a short video I put together after I got home from the hospital. kzfaq.info/get/bejne/jaiZataB1c2wYYE.html

Hello. I've had a d b s procedure on Friday 22nd for my left side. It was amazing.

Thanks for sharing. My dad has Parkinson's

Thanks for sharing your experience. I have very similar dyskinesia in my hand and foot. Unfortunately amantadine was not effective for me though.

It’s eerie seeing you left hand move like mine. I just started the amantadine also, makes me groggy but it’s helping. Now I just need to find an mds, my neurologist is an epilepsy specialist and I’m not sure she can help enough.

Michelle I have had those symptons for a while. Dystonia, I have being doing exercises and ingestings a variety of vitamins, all helping

I just got diagnosed myself, but my turning foot and weird toe actions are from Dystonia that is not from a medication asI don't take any. It is occuring as a secondary condition. This is all quite a journey with little gremlins popping out in our paths as we go along.

By the way, Amantadine, was used for influenza and they found it helpful for Parkinson's. You will need to take it long term, unless there are serious side effects from it. As for the Sinemet, the problem with reducing it, is you may have other problems. I would not be in a hurry to lower the dose.

Hey Michele! I am wondering how your amantadine is working? My MDS prescribed the same for very similar symptoms - mostly in the evening after I think the daily sinemet has built up in my system throughout the day. It has worked pretty well for me. Thanks for sharing your experience. Hope you're well ! And yep, it is what it is - smiling or not !! (Referring to your RBF video from today)

I have most of the listed affects of PD and my doctor agrees I have PD, but was sent to a Neurologist to confirm. Within 5 minutes he said I didn’t have PD. Not near the work up I got from my doctor. Being given meds for the tremors, not much change. VA disability claim is on hold because of the neurologist finding. Where can I go from here. The doctors don’t even want to hear about all the symptoms I have. I lost my ability to drive truck because of my balance problem and falling down. I was taken off the truck for liability reasons which I understand. I don’t know what to do.

Please ask your doctor about getting a Deep Brain Stimulator "DBS", this will allow you to take less meds which cause your dyskinesia. I’ve been in your shoes before. I was diagnosed in 2009 after three years of tremors in my left hand, I’ve gone through all the meds that you’re taking now. My DBS allows me to function at 56 today, including driving!

Amantadine is helpful. My wife, who has Parkinson's for over 10 years has the problem, as you describe, about her leg turning in. You need to spread your feet like Charlie Chaplin and take wider steps. Be careful of your balance.

Thanks for sharing your experience. I would recommend reading a book "Rethinking Parkinson's disease" by John Coleman. Also watch on KZfaq videos by Daphne Bryan on Vitamin B1 therapy for Parkinson's.

I am in my mid-70s. I was diagnosed with PD in Feb 2019 - 4 1/2 years ago. In Canada my MDS is a neurologist, who is covered 100% by our national Medicare system. Every PD patient is different from others with PD in almost every aspect, although the catalogue of possible symptoms is shared. Our medications and reactions to them are uniquely individual. How we undertake non-medicinal counter-measures such as exercise is unique. For me, Sinemet here in Canada is replaced by a generic combination of Carbidopa/Levodopa (25/100). I take 2 1/2 tablets at 8 a.m., 3 tablets at 1 p.m., 2 1/2 at 6 p.m., 1 tablet at 11 p.m. and one slow release 50/200 tablet at 4 a.m. The 11 p.m. and 4 a.m. doses deal with "off" time in the morning. I am not a doctor and not at all educated in medicine or physio-therapy etc. and my medications and schedule are designed just for me. I'm just relating about a system that works for me. Always get medical information from a qualified specialist, who can guide you with your personal battle with this disease. There may be PD zoom groups in your area with participants who can share real life experiences. I am hopeful for a cure for all PD sufferers, although chances are slim that one will be available before I check out. My sole piece of advice is to not let yourself become depressed about your PD. Do everything you can to slow down and minimize your personal set of symptoms. Having PD is tough. Just do your best one day at a time.

I just fired my MDS and seeking a new on. I've been on Sinemet for 6 years and its wearing off too soon so they put me on Siligeiline as a supplement with Sinemet. I had horrible side effects. I'm at a loss. I'm starting to feel like the Tin Man. Muscles are gettin stiff. Gate is getting worse. I had heard about vitamin B1 and its great reduction in tremors and stiffness. I'm on it now but am not sure how much to take.

Has anyone ever heard of furrowing of the brows being an early symptom? Where one gets a very serious expression on their face because they cannot relax the eyebrows?

I am also patient of PARKINSON last seven years ago. Please send me complete list of medicine.

I do Botox injections every three months for my toes, and it works wonders

I was on amantadine for a month and started hallucinating like crazy and had to stop before the lizard people took over the world. No joke!