What I learned from my Parkinson's Movement Disorder Specialist
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- Опубліковано 5 вер 2024
- I've been on Carbidopa/Levodopa (Sinemet) for 14 months and it turns out that it's starting to have an effect on me. I've noticed a progression in symptoms that aren't key symptoms of Parkinson's. Watch and learn! Please subscribe so you don't miss future updates! God bless you all.
Your attitude is so refreshing. Thank you for sharing.
Thank you so much! I try to stay positive.
You are a lovely and very brave woman! Stay strong! A cure is just around the corner!
Thank you! I love your positive outlook. I agree....it will happen.
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.
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!
Thanks! Yeah, it was a fleeting thought. I truly don't care what people think. God put me here for a reason and I'm here to learn, grow, and help others. I'm grateful for the life I have been blessed with.
m😊
@SDWP
AMBROXOL, Benfotiamine, and Bovine Colostrum. Please Google or UA-cam them with your condition.
I have a PERSONAL experience with these.
Then thank me later :)
You are a very brave woman please keep your spirits high as you are.....I m really impressed ❤
Will do! :-)
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’re welcome. I’m glad they’re learning about it.
Thank you for Sharing. God bless you!
You're welcome.
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 😊❤
He looks like he's 25 and his intern looks the same age. I'm so glad he's my doctor...he's already so brilliant. He follows up with very lengthy in depth messages with all kinds of tips. Yeah, I really don't care what people think...it's liberating.
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.
Great way to approach it! I've always been open about my PD. I always think it's a good opportunity to educate people on it. Best wishes.
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!
Thank you for the information. Yeah, he is pretty awesome. Thanks for stopping by.
@@SDWPp 4:52 i
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.
Oh wow! Thanks for sharing! I hope things work out for you and your activities aren’t interrupted!
Hello. I've had a d b s procedure on Friday 22nd for my left side. It was amazing.
I’m glad it worked out well for you! Best wishes!
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. ua-cam.com/video/WBi7sPpgL1M/v-deo.html
That was hilarious...Good for you😂
I'm sorry for the late response. I'm just realizing that I missed a few comments when I was on vacation in Europe. Thank you for the kind words. I've actually seen your video before....I watched it a few times cause it had me laughing so much. I hope you are doing well and congrats on such a long marriage. I love hearing when couples make it work so long. How are the piano lessons going? I like to get on there and try to play songs that I learn from UA-cam, but I really need to get lessons. Best wishes!
@MrTimFarnham
I am sure you had a wonderful time in Europe (I did watch your video about your travels to Germany and Italy). On a side note, before I retired I did extensive traveling throughout Europe, Asia and the Americas (North and South). You asked how my piano lessons are going...Actually, I have never had a music lesson on any instrument (I'm self taught) and now with UA-cam, I just watch someone play a tune a few times then I give it a try. I truly believe that music helps to slow the progression of Parkinson's Disease. Here is an example of me playing my wife's keyboard after watching someone play "A Whiter Shade of Pale" and adding a video of me play my son in law's guitar trying to find some notes to go along with the keyboard. I was also being silly (reading a book and eating Jello). ua-cam.com/video/7z1AacpWE_c/v-deo.htmlsi=SzCBAlMox5sKVckg
@@MrTimFarnham Ha ha! Great sense of humor and you sound great. I do the same thing with you tube. I try to learn Hanz Zimmer's songs. Glad you got in so much traveling! Thanks for sharing your video.
Thanks for sharing. My dad has Parkinson's
You're welcome. Sorry he has to deal with it as well. Best wishes.
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.
So far I haven’t felt groggy. Good luck with your search!
I'm also in the same situation looking for a MDS. My neurologist handles many neurologic diseases.
Thanks for sharing your experience. I have very similar dyskinesia in my hand and foot. Unfortunately amantadine was not effective for me though.
I'm sorry to hear that. I hope your neurologist can find something that works for you. Best wishes
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.
Thanks for sharing. Best wishes
Michelle I have had those symptons for a while. Dystonia, I have being doing exercises and ingestings a variety of vitamins, all helping
Ah yes, Dystonia is another beast. I have experienced that a few time in my left calf/foot. Good times. lol I see my by your additional comment that you meant Dyskinesia. Yeah, I have to look up how to spell it every time! lol
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.
Thank you for sharing.
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!
I’m not quite ready to take that plunge yet, but I will definitely keep it in mind. I’m glad to hear it’s working so well for you! Best wishes
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.
Thank you!
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.
If you were in the Persian Gulf AOR, look into the undiagnosed neurological disease. My neurologists wouldn't commit to parkinson's. Submitted for undiagnosed neurological and went from 40% to 100% p&t for parkinsonism. Saw the VA neurologist and they finally diagnosed parkinson's disease.
I would recommend a second opinion from another neurologist.
Did they give you a Carbidopa levodopa for the tremors?
Go to a different neurologist.
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.
Thank you for sharing and great advice!
Thanks for sharing your experience.
I would recommend reading a book "Rethinking Parkinson's disease" by John Coleman.
Also watch on UA-cam videos by Daphne Bryan on Vitamin B1 therapy for Parkinson's.
You’re welcome. Thanks for the recommendations.
I am also patient of PARKINSON last seven years ago. Please send me complete list of medicine.
Please speak to your doctor about medication so they can determine what is best for you. I wish you the best.
I do Botox injections every three months for my toes, and it works wonders
I might have to look into that!
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)
Hello! My dr. had me take one pill (100mg) for a week, if symptoms continued then I take 1.5 for the next week, and if symptoms continue I take 2 pills a day. I'm at 1.5 now and I'm still having some slight dyskinetic movements in my hand (my foot has improved). I have a feeling I'll have to end up with the 2 pills a day. He said if I were to improve at the lower dosage then I could have stayed at that dosage.
Thanks for the well wishes. Yep, we have to make the best of it.
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.
Sorry for my late response. Somehow I overlooked it. I'm sorry you are dealing with these issues. Did you ever try the B1 and did it work out for you?
@@SDWP
Yes I'm taking it now but I don't know how much to take. I am currently taking 2 250 mg capsules a day. No noticeable improvement yet. Having a lot of anxiety right now. Have been taking it for 1 week now. Any suggestions? Thank you.
@@invoxicated I’m sorry, I don’t know enough about it to give a suggestion. If you search you tube “Parkinson’s B1” this lady’s video should pop up and she talks all about it. If you don’t find it…I’ll look when I get a chance to give you the name of the video.
@@invoxicated This is the video title ... Parkinson's Disease:- "Parkinson's and the B1 Therapy" with Daphne Bryan
I hope you're feeling better today.
@@SDWP
Thanks for the reply. Yes I saw that lady who talks about her experience with B1. But again I need to know what dosage to take. I have viewed several YT vids but everyones PD is different. Also there is so much misinformation its mind boggling. I now have Inbrija which is an inhaler and there are many YT vids on that but every single one has the comments section turned off so I can't read what peoples experience is with that medication. Thats very suspicious. I will take to my pharmacist for his opinion. Again thanks for your reply.
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!
Ha ha! Sounds awful!
@@SDWPyea, the wife ended up calling the sheriff's office and they came out and gave me an unsolicited ride to our local hospital. It took almost a week, after they took me off to get back to some semblance of normal..
@@vinylsurfer2155 Wow! That is pretty crazy. Glad you're ok.
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 haven’t heard that specifically
Yes, I have observed this. Probably they call it as a form of dementia with parkinsonism.
BTW, I feel these disease names do not really mean much or well defined enough along with symptoms.
We can approach the cure of this by treating symptoms and the root causes.