Levodopa fears and misconceptions -What are we really afraid of?

[@ParkinsonsWigglesProject]

Awesome video! As you know this is a topic that is near and dear to me because fears and misconceptions about Carbidopa/Levodopa impacts the quality of life for people with Parkinson's. These discussions are vital to have....thank you so much for a video spreading the word that adds to it!! ♥

[@LifewithParkinsons]

Hi Jennifer. I totally agree with your comment. Irrational fear over something so essential for PWP's well being is difficult to watch without saying something. Together we can make that voice louder. Thank you for your kind words.❤

[@JohnMcCreery]

When I was diagnosed last June, my neurologist prescribed Levodopa, 300mg (3 x 100mg tablets, one at a time three times a day). On my own I added a daily workout and drinking water infused with fermented ginger to feed the gut microbiome to deal with constipation. I am 79 (almost 80) and in better shape than I have been for years!

[@LifewithParkinsons]

Hi John, thank you for sharing your experience. A daily workout and lots of water is essential for dealing with PD. The ginger for the gut microbiome was something I was not aware of. I will have to check that out. Thanks!😁😊😀

[@troopergray]

I usually can’t sit through videos dealing with PD, however positive or informative. It’s usually the narrator’s tone or lack of balance. But yours are really good. I listen to your whole video. And they’re really helpful. I’m 73 and diagnosed 10 years ago. Thank you.

[@LifewithParkinsons]

Hi Trooper, thank you so much for your kind words and encouragement. I do try to leave viewers with something every video. Thank you for pointing that out.😊😁😀

[@Amira12895]

So happy to see you getting better

[@kendc4725]

Thank you for this video. I’m currently on a DA, but know Levodopa is coming. This information will help me have a more informed discussion with my MDS about that option.

[@LifewithParkinsons]

Thank you, Ken, that is great to know!😀😊😁

[@AFly16]

Thanks for all of your reseach David. Very helpful info.

[@LifewithParkinsons]

No problem, my pleasure. Thank you for letting me know it is helpful.😁😊😀

[@DavidChacon-mm3id]

Great information.. you should be my doctor… and always nice to see you.. you look good keep up the good work!!

[@LifewithParkinsons]

Thank you, David! Appreciate your kind words and support.😀😁😊

[@4merLawman]

Thank You for all the research , I enjoy your videos

[@LifewithParkinsons]

Thank you Bobby😃😀😄

[@angelakindon9839]

Carbo/levo has been the best. I’ve had Parkinson’s since January. 2015. Starting to get dyskinesia more. Getting DBS in May.

[@LifewithParkinsons]

Please let me know how your DBS goes.😊😁😀

[@davemorse8511]

Thanks David , just found your channel and subscribed, love your philosophy at the end, I have been fighting Parkinson’s for 12 years with that idea in mind and still going strong. Cheers Dave 😃

[@LifewithParkinsons]

Hi Dave, pleasure to meet you. Thanks for saying hello.😁😃😊

[@Lions_Forever71]

Thanks for all you do David!! Great video again!!

[@LifewithParkinsons]

Thank you for your kind words and encouragement.😊😁😃

[@alecspeer]

XX tablets of carbidopa / levodopa daily sounds like a lot, but the right doses at the right times works wonders for me. As my neurologist says in a reply to my email to him reporting the results of a trial increase of medication, " I take it that increasing the dose of Levocarb help to improve your symptoms? If that's the case, then this is the correct amount of Levodopa for what you need right now at this stage of the disease." Exactly.

[@LifewithParkinsons]

Hi Alec, I love the response from your neurologist. Sounds like he nailed it!😊😁😀

[@Don-io6cr]

Thank you so much, your information really helps me!

[@LifewithParkinsons]

Happy to help! Thank you, Don.😊😁😀

[@Amira12895]

You're getting better

[@LifewithParkinsons]

Thank you😊😁😀

[@JohnMcCreery]

Bravo1 FACE EVERYTHING AND RISE! HIGHER!!!

[@LifewithParkinsons]

Thanks John, this was a great video to make, lots of fun.😁😊😀

[@GoProGoalieUzi]

Excellent video bro! Fantastic information. Without Levodopa I don't know what I would be like. I am very happy with it for me anyways. Even though the side effects dyskinesia are very bad at times I would rather deal with that than be off. I trust it. Tough spot we are in. Keep up the great work :)

[@LifewithParkinsons]

Hi GoPro! Yes, with out the L-Dopa I'm sure I would be struggling through the days. I could not imagine life without it. Red light therapy has helped greatly with the dyskinesia for me.😊😁😀

[@gloriamaryhaywood2217]

My brother is truly 'frozen' without this medication. He can't walk or even get out of bed or out of a car without it taking him forever. And even his speech is slurred. Levodopa allows him to be able to Function!!!

[@GoProGoalieUzi]

@@gloriamaryhaywood2217 tell him to keep the fighting!! Noquit. When the levadopa kicks in I strongly suggest he exercise. Maybe he already does, it makes a big difference.

[@mommerang]

First, it’s my understanding that protein interferes with Carbidopa-Levodopa, and if protein is important for brain health, are we sacrificing one thing for another? Second, all those other symptoms of PD progression that you listed, that Carbidopa-Levodopa does not help, sounds like Dysautonomia, aka Autonomic Nervous System Dysfunction. It is my understanding that Dysautonomia affects approximately 50% of all PD patients. Dr. David Goldstein, a leading expert on Dysautonomia even believes PD is a type of Dysautonomia. Dysautonomia can be primary or it can be secondary to PD. Has anyone on your medical team ever mentioned Dysautonomia? I have never heard you mention it on any of the videos I’ve watched on your channel, and I have watched a lot of your videos.

[@LifewithParkinsons]

Hi mommerang, I had not even heard of the word Dysautonomia until now. No one on my medical team has mentioned it. Yes, protein does interfere with dopamine so I try to space it at least 1-2hrs away from my medication. It seems to work for me. I will have to check out dr Goldstein. Thanks😀😁😊

[@angelakindon9839]

You were very encouraging……

[@toryberch]

David has been since he started his channel even when he was struggling he always finds a way to help others 🙂

[@LifewithParkinsons]

Thank you, Tory.😊😁😀

[@LifewithParkinsons]

Thank you Angela.😀😁😊

[@rossmiles7169]

EXCELLENT

[@LifewithParkinsons]

Thank you so much Ross😃😀😄

[@bozerbrett7867]

Inspirational video! How long after you were diagnosed with PD did you start taking carbidopa? I was diagnosed about 6 months ago and had symptoms probably a year before that and I’m on no medication yet. I see my MDS again next month.

[@LifewithParkinsons]

Hi Brett, I'm glad you found the video helpful. I was given a CL prescription the same day I saw my MDS. Here is the link to my diagnosis video. kzbin.info/www/bejne/fpm3kJ5tmsd3iZo Thanks for your comment and for saying hello. 😀😁😊

[@Amira12895]

Very important topic

[@LifewithParkinsons]

I agree😊😁😀

[@DavidChacon-mm3id]

Thanks!

[@LifewithParkinsons]

Hi David, thank you so much for supporting this channel!💓

[@mattgrantham597]

Hi Dave and thanks for all your great efforts and info I am likely getting ready for Carbidopa/Levadopa very soon My greatest concern is developing drug induced dyskenisia over time You did say the L/G does not shorten lifespans, but that would not necessarily include quality of life issues dyskenesias might cause Thanks

[@LifewithParkinsons]

Hi Matt, thanks for saying hello and leaving a comment. Yes, dyskinesia can be very uncomfortable, long in duration, and rather annoying, but compared to being off, it is preferable for me. I have found walks and exercise can help to reduce dyskinesia, as well as red light therapy. Any other questions please let me know.😊😁😀 Link to Red light video with dyskinesia. kzbin.info/www/bejne/el7HYmZ-osdso6c

[@mohsinsheikh8076]

Hi David, Nice one as ever. What Options are there for people who have A- typical parkinson where the dopas medication does not work and hence give one side effects

[@LifewithParkinsons]

Hi Mohsin, I don't really know what a doctor could prescribe in that extreme situation. I know it happens in very rare situations where L-Dopa is just not tolerated, but I don't know what people do, I could only speculate. For the side effects: red light therapy has greatly helped my dyskinesia, and the PD gloves have helped a lot also. If not for those two helps I would be in much worse shape.😀😁😊

[@MikeMercury]

liked this video david

[@LifewithParkinsons]

Thank you Mike, thanks for the feedback😀😁😊

[@toryberch]

Very well done 👏👏 I want to stay in the race for life 🙏

[@LifewithParkinsons]

Good choice, me as well😀😁😊

[@andrewalthuis3666]

I also take a range of different supplements purported to help slow the progression. N-acetyl cystiene, alpha lipoic acid, acetyl - carnitine, vit d, b complex, magnesium, zinc Black pepper extract and ginger root. Also a very low carb ,high fat moderate protein diet. 5% carbs 70% fat 25% Protein

[@andrewalthuis3666]

I just put up a comment about how I have had Parkinson's disease for 11 years from diagnosis and how I only use 99% Mucuna extract and nothing else, Except for some supplements. Zero dyskinesia, Zero side effects. And I take I gram 8-9 times a day.

[@LifewithParkinsons]

Thanks Andrew, appreciate the information.😀😁😊

[@LifewithParkinsons]

Thanks Andrew. Glad you found a system that works for you. Thank you for sharing.😊😁😀

[@newworld6474]

coffee and exercise

[@newworld6474]

what is the maximum quantity of levodopa pills doctors recommend per day?

[@LifewithParkinsons]

That's a really good question that I do not know the answer for I have been told it usually depends on how much the patient needs but there must be a maximum dosage out there. 😄😀😃

[@toryberch]

Hey David and Kiwi 🦜🤗🥰

[@LifewithParkinsons]

Hi Tory!🦗💗

[@Amira12895]

Thanks for sharing with us

[@LifewithParkinsons]

My pleasure😊😁😀

[@angelakindon9839]

I tried it and it made me sick, live and learn!

[@LifewithParkinsons]

Thanks for letting me know.😀😁😊

[@JohnMcCreery]

Glad that you are alive and learning. FYI when my Japanese neurologist (I live in Japan) prescribed Levodopa, he told me that some people feel nauseous after taking it. Not a big deal. He also prescribed an anti-nausea medicine. I don’t need it often, but when I do, it works like a charm.

[@LifewithParkinsons]

@@JohnMcCreery Thanks for the info John.😀😀

[@JohnMcCreery]

Too old (79 going on 80) to be a KZbinr. Have, however, been posting on Facebook. Should you be interested, here is the latest. The Parkinson’s Diary 65 (Feb 19, 2024) What’s new? Mostly tweaks to established routines. #Medicine 1. I continue to take Dopacol (Japanese Levodopa) three times a day, one 100mg tablet per dose. Here the tweak is shifting the first two doses from 7:00 and 11:00am to 6:30 and 10:30am. This gives me a full hour+ of UP time before lunch. 2. Added Magtein (magnesium L-Threonate) to my supplements, two capsules in the evening and one with B-complex, Omega-3 fish oil, and Lutein after breakfast. Now seem to be getting a better, 6-hour+ night’s sleep. 3. The homemade fermented ginger (fermented with lemon slices and raw honey) seems as effective as commercial products in easing constipation. #Exercise 4. Daily thirty-minute workouts before breakfast. On nights when we are home, I join Ruth in a second workout, typically some combination of Qigong, Tai Chi, or Strong Woman resistance training and/or playing catch (See below). 5. Walking from home to office and back again typically involves around 2400 steps. When the weather is right and no other commitments interfere we may walk down to the station or around the park above where we live, doubling or tripling that amount. 6. Re tweaking the morning workout. On the advice of PDWarrior coach Jason King, I am now alternating mainly cardio (modified HIIT on an indoor bike) with mainly resistance (wall and floor body weight work and stretching. Between sprints on the bike, I slow down, sit up straight and add arm movements, e.g., the PD Warrior “Crazy” or “Reach for the Sky.” 7. Playing catch. Ruth and I began by tossing a plush ball back and forth. Thanks to Jason’s advice, we have now added a small, bouncy ball. One of us tosses the plush ball and the other bounces the small ball off the floor. Coordination is a work in progress. 8. Another useful bit of PD Warrior advice has been to incorporate exercise movements into daily chores. We sleep on futons and now, besides having to get up and down from the floor to visit the toilet at night, I have made taking down and putting away the futons my chore. Since the bottom futon lives on a shelf located above my shoulder height, this means lifting it up and down, a modified deadlift and press every day. #Diet 9. We continue to violate the conventional wisdom that says those of us with PD should avoid dairy. We continue to consume cheese every day and occasionally ice cream as well. So far, no problems, perhaps because I make sure that Dopacol (Levodopa) doses are separated by at least an hour before and after meals. #Results 10. I am in much better shape than I was when diagnosed, so much so that Ruth and I are looking forward to flying to the States for grandson Keegan’s high school graduation in June, and thinking of spending some more time in Taiwan between now and then. Fingers crossed but feeling hopeful.

[@LifewithParkinsons]

@@JohnMcCreery Thanks John, that's a great diary to have

[@audiotech6513]

Mucuna works fine but need the 99 percent extract 1200 mcg per day works

[@LifewithParkinsons]

Hi, thanks for letting me know😀😁😊

[@audiotech6513]

Have you heard of Mucuna

[@LifewithParkinsons]

Yes, I talked about it in the 3rd part of the video. Just not for me. 😊😁😀

[@Amira12895]

I love kiwi so unique

[@LifewithParkinsons]

💓🦜

[@PeterKavanagh-k6c]

Pj lreland got p d 14 years i count my self yucky to have levodota My body go with out it

[@LifewithParkinsons]

Hi PJ, I would be lost without my levodopa. I get it.😊😁😀

[@angelakindon9839]

I like Zig zigler…..

[@LifewithParkinsons]

Hi Angela, me too.😊😁😀

[@newworld6474]

I oops take prolopa easier on the stomach

[@LifewithParkinsons]

Thanks for the info😄😀😃

[@newworld6474]

I oops take prolopa easier on the stomach@@LifewithParkinsons

[@angelakindon9839]

Togeter'

[@LifewithParkinsons]

Together is the best way.😊😁😀

[@janettewertish7316]

sound not as good on this one

[@LifewithParkinsons]

Thank you for letting me know 😃😊😀

[@angelakindon9839]

Thanks!

[@LifewithParkinsons]

Hi Angela, thank you for supporting this channel.💓