I am not sure if you remember me, but I commented on one of your videos about the C/L not helping my husband. He was diagnosed with Parkenson's in 2022 in the United States when we go there once a year and stay for a few months because it is free on our Medicare or I should say Scan. We have a local Dr. here in the Philippines where we live the rest of the year, but we didn't have a Neurologist until December of last year when my husband started sleeping too long a time and I was having trouble waking him up and he started having a harder time walking. We went to a Neurologist here and got a new MRI and he did not have Parkinson's, he had Normal Pressure Hydrocephalus. That is why the medication did not work for him. He has had a VP Shunt put in and he is doing a little better. I have found other people who have had this misdiagnosis and had NPH instead, so I guess if C/L does not work for people maybe they should get a new MRI and a second opinion.

@ParkinsonsWigglesProject

Ай бұрын

Hi Lynette!! The story of your husband illustrates how challenging a diagnosis can be for neurological issues. I think both Robin Williams and Linda Ronstadt were misdiagnosed with PD. Linda turned out to have Progressive Supra Nuclear Palsy and Robin Williams Lewy Body Dementia. Obviously this can have a HUGE impact on quality of life during a time when we need the right information to treat the actual disease. There's someone who I know who hasn't responded to any of the Parkinson's meds she's been given and now her neurologist in second guessing his PD diagnosis. He wants her to see and MDS. I hope that you husband continues to feel better and I sincerely appreciate your update, because it's another story I can share with my friend to inspire them to get that second opinion. Thank you ♥♥♥

You hit the nail on the head when you said that every day is different. I have a WONDERFUL neurologist who has prescribed c/l 25/100 up to 4x a day and he has given me full permission to take it as needed and experiment with the timing and frequency. My goal is to take as little as necessary, but I’m also finding that sometimes I go too long between doses. I stopped taking c/l during my pregnancy and my Parkinson’s symptoms were very minimal during that time and but they came back with a vengeance almost immediately after I had her. So there’s no doubt that women’s hormones affect both our symptoms as well as the efficacy of the medication. Thanks for the talking about this!I know I’m late to finding these videos.

I go to a clinic that specializes in movement disorders, primarily PD. I'm 2 years into my "official" PD diagnosis. My doctor is pretty loose on C/L dosage and timing. While the clinic encourages timeliness my doctor says that it should not rule my life and schedule. She also gives me enough to take a couple extra a day when needed. I time my dosage based on when I get up in the morning (any time between 7:00 and 9:00 depending on my schedule for the day), first dose, then every 4 hours or so within plus/minus 30 to 45 minutes. It works for me and she's good with it. My dosage is 3 - 25/00 tabs in the morning then 2 around noon and again at supper time. She also gives me enough to take 2 more as needed through out the day. I usually don't take those, but I do at least once a week.

yes, I choose my timing based on what time I wake and what is happening with my body. I too have seen that stress causes the med to be near null and void. learning how to deal with fatigue and nausea/ dizzyness that are probably side effects from the drug. hard exercise helps so much and just learning to not fear... this is a big deal because it can be scary in the beginning.

I feel so validated - what you’ve described is almost EXACTLY what I’m experiencing (diagnosed 9 years ago at age 38, symptoms got much worse from job stress until I could no longer work 2 years ago). Currently taking 1 “regular” carbidopa/levodopa and 1/2 ER together ~every 3 hours, along with amantadine 2x daily and 100mg Xadago daily. I tried Rytary but it didn’t work significantly more than the ER c/l, and getting it was much more stressful. My MDS seemed surprised when I told them I could tell right away when my meds were wearing off, so it’s nice to hear that others can, too. I’ve also found that anything that causes an adrenaline spike will trigger dose failure within 10 minutes or less- like tornado sirens going off or, previously, phone calls from my old boss. If I’m really on top of things, an off period will only be right leg dystonia for half an hour; those work calls occasionally triggered 3+ hours of dystonia in all 4 limbs (tornadoes confirmed on radar in my county do, too) - I recommend avoiding those situations if at all possible! 😂

@ParkinsonsWigglesProject

Жыл бұрын

I am so with you on anything that causes and adrenaline spike!! What usually happens to me is my tremor comes roaring to life, and it takes 15-30 minutes for it to mellow out/becomes normal again for me which is not visible. Dystonia sucks and is so painful! I am relieved that at least for now it usually goes away after 5-15 minutes. I've had a rare few that last 30 minutes. I grew up in Illinois and know about tornado country, stay safe. I am in California now and wildfires are a serious issue, What I worry about is that I will freeze if I need to get out of the house in a hurry. Though it has been reported when people with PD need to respond quickly it has been done. Fingers crossed and thank you for your comment!! 🥰

I’m so thankful I’ve found you and this channel!❤ I’m 74 and had symptoms for 6 years before being diagnosed and starting on C/L. It was so immediately helpful. Now 4 years later, I’m feeling as you mentioned. Need more in the morning and less later in the day. Thank you so much.

@ParkinsonsWigglesProject

Ай бұрын

Thank you so much!!

Hello, I appreciate your videos so much. I am at about the 2 and a half year diagnosis point, but first felt it five years prior to that, when I was 54. I currently still work full time as a big rig driver in the Bay area and desperately try and hide my symptoms from my coworkers. I take Carbidopa as needed when I feel the symptoms coming on 3 at a time. I was so happy to hear you say you don't always take them exactly the same time every day because I do the same and thought I was doing it wrong. Keep up the good work, your videos help me and many others maybe more than you realize. Thankyou, Perry

@ParkinsonsWigglesProject

3 ай бұрын

Hi Perry! Thank you for your kind words and sharing your story. Before I started taking C/L I couldn't hide my symptoms and everyone wanted to know what was going on with me. Then when I started taking C/L people were shocked and like wow you look great all of sudden what happened?! Be safe out there!

I started taking Carbidopa/ Levidopa in December, 2021 (about 5 mo after I was aware that I had a strong head tremor and R hand tremor) I was referred to a Neurologist/MDS in 8/21, had DaTScan in 9/21 w/ abnormal results, and I didn’t start taking Sinemet till 12/21 as I had some urgent training to attend in Oct/Nov. I was 70 at the time My Dr. had me start slow, and it ended up that taking 2 C/L 3x a day worked well for me. I continued that for almost a year. At that time 11/22 I started getting a resting tremor as I tried to sleep at night, and my Dr. Had me add 1 Tab ER before bed each night, which nipped that resting tremor in the bud. Still keeping that tremor at bay. At first he just diagnosed me w/ Parkinsonism, but after the resting tremor started, he changed the Dx to PD. A year or two b4 my tremors started, I had cramping of the toes and the thigh, but my. Regular Dr “poo-pood” it as a nerve thing… in the last year, I have occasional foot cramps, and I have to get up, stand, try to walk around to make it better. When I see my Neurologist\MDS next, I will discuss this. So far, I have relied on my Dr. About my dosing of C/L, but I am glad u brought this up, so as my PD progresses I w/ feel comfortable in asking my Dr. About how I might vary my dosing, as needed. I learn so much from you, and so many others from these videos. Thank you. At this point, I am not having balance and walking problems, so I am grateful that I am still able to walk with my Guide Dog, Dashi. ( A sweet 3 yr. Old Golden Retriever) I am legally blind, since birth, so I am pretty independent and active. My hubby has Post Polio and uses a manual wheelchair, but we are enjoying life. I attend Parkinson’s Exercise class and see an OT, PT. and STherapist, as needs come up.

@ParkinsonsWigglesProject

11 ай бұрын

Hi Debby! Thank you so much for your comment and sharing your story with us 💞 Are your foot cramps dystonia? It's great to hear that you are comfortable talking with your doctor and that you and your hubby are enjoying life! No matter the challenges we can enjoy life, and we know somedays will be harder than others, but my goal is to not let them linger and take over the ones that really aren't so bad! 🥰

@glennastrickler102

7 ай бұрын

❤😊

I love that you have become attuned to your ebbs and flows and have figured out what works for you!! My well meaning soon to be ex doctor would call you an addict. He wants dosing to be under total control. I take rytary which is extended release. I like it because typically I need it every 5 hours, but sometimes for reasons I have yet to figure out, I need to take it sooner. Sometimes my symptoms come on like gangbusters! It never occurred to me that I could chew one to get it going more quickly.. yesterday i learned that drinking the pill with lots of water flushes it more quickly into the small intestines so it can be properly absorbed.. we shall see. My doc has used the consequence of Dyskenisias as a way to scare me from taking too much med. I was glad to hear in another video of yours that dosing has changed over the years and 800 was at one time the max.. The other problem is I don't sleep well and generally the only thing that helps is a Sinemet which is an IR (immediate release Carbo/levo.. I take one or two and am able to get back to sleep, generally. My doc wants me to use antidepressants- psychotics to sleep.. bad for this brain. I usually get pretty weird on antidepressants.. Keep up the great work!!! Miki

@mikiwhite8190

18 сағат бұрын

Thank you for breathing freedom and trusting oneself into this journey. The questions you are asking are so important .. I feel supported and understood for the first time and I have so much exitement and joy my hands cant type the thoughts out fast enough!!

Thanks for discussing this topic.

@ParkinsonsWigglesProject

11 ай бұрын

Thank you David! 🥰

Thank you

This was very helpful and makes so much sense.

@ParkinsonsWigglesProject

8 ай бұрын

Thank you!! It took time for me to get there 🥰

Interesting Content, always really appreciate you Jen

@ParkinsonsWigglesProject

10 ай бұрын

Oh thank you!! ❤❤❤❤❤

Very well spoken. Each day is different and my requirements for C/L are potentially different every day, but i certainly know when I need a pill and I believe that is because I now know what ON is like and what OFF is like. I think it's a personal journey ... Everyone's PD is unique to them.

@ParkinsonsWigglesProject

Жыл бұрын

Thank you Mike! Everyone’s journey is different and it makes a difference when you know the difference between on and off, it took me a while to get it 🥰

Hello Jennifer, thanks for your vlog.

@ParkinsonsWigglesProject

Жыл бұрын

Thank you Twiggy!!

merci dear

I take one Rytary capsule twice daily. If I take more I get dystonia in my left leg. PwP talk about on and off times; however, I feel no effect from meds. I too just left a stressful and demanding job. Retired after 30 years. Now I spend hours daily at the gym. I find my post heavy workout recovery is not C/L, but rather hydration, replacing electrolytes and a nap. The last oddity is that I feel my best after waking up in the morning, after approximately 15 hours without any C/L. Then after an hour it feels like a fog settled in, but I go on with my day. PD doc tells me that C/L doesn’t work for everybody. Good luck and great channel.

@ParkinsonsWigglesProject

Жыл бұрын

Thank you so much for your comment!! 🥰

I Love your talks ❤

@ParkinsonsWigglesProject

5 ай бұрын

Thank you!!

Hello Jennifer , good info ❤️

@ParkinsonsWigglesProject

11 ай бұрын

Hi Aurora!! Thank you so much ❤

You are so wonderful. Just listening for my mom and step dad. Step dad was diagnosed 2 years ago. Thank-you for your chats.

@ParkinsonsWigglesProject

21 күн бұрын

You are wonderful for listening for your mom and step dad ❤️ Thank you for your comment!

Listening to you is like you are describing me and my Parkinson situation. Thanks for your videos. Miriam ❤🇨🇺🇱🇷

@ParkinsonsWigglesProject

Ай бұрын

Thank you for your comment and for watching Miriam! ♥

Thank you for you videos. I only found your channel and even though im not sure mine is YOPD ( 1st clear symptoms i was 58) im sure stress at work and with family factor big time with onset of illness and symtoms becoming very visible. Like yourself, my pd is mostly on the left side and dystonia (onmy toes) is the bigests and most painful symptom. manifestation.that im very low in dopamine. Most of the time i can feel when my madopar is starting to wear off, whitch require resting a bit and waiting a bit for the meds to kick in. Im trying now to avoid any stressful situations...not an easy task for me but its survival and wellbeing thats at stake here.

@ParkinsonsWigglesProject

10 ай бұрын

YOPD usually is defined if you're diagnosed before the age of 50, but it's not important here. I too do all that I can to avoid stressful situations but also manage these situations when they pop up better than I ever have. I too believe it's essential for survival...while this might sound extreme anyone with PD will know exactly what we mean!

I am right there with you. More stress seems to magnify my systems. That is when I have to take that fourth pill. You were also spot on about the brain and mouth dis function, that too is another clue for fourth pill. Thank you for your video.

@ParkinsonsWigglesProject

2 ай бұрын

Thank you for watching and your comment! 🥰

Hey! I love the videos. My MDS prescribed mine for 6 a day but told me to take as needed. She said to live for the day. But before I was very strict on timing. She didn’t like that and said not to let PD run my life.

@ParkinsonsWigglesProject

11 ай бұрын

Live for the day indeed!! As the years pass your body will tell you and the strict timing doesn't work because PD has it's own clock : )

I have found that drinking coffee in the morning without food I can take carb levo . I have no problem for at least 4 hours. But after 4 hours I'm drain of energy. I enjoy your podcast thanks

@ParkinsonsWigglesProject

10 ай бұрын

Thank you Cynthia! I love coffee but have mostly given it up, I write that as I have a cup next me :) I will drink a cup or two once a month. Sometimes it makes my dyskinesias worse, sometimes not, so I just decided to cut it out and treat myself here and to a cup.

Hey Jennifer 😊 Yes, I let my mind tell me when it's time as I have Lewy Body with my Parkinson's. Once my body starts feeling sluggish and painful and my anxiety levels start spiking I know it's either because I've waited too long and forgot or I'm flaring. I do try to stick to a time schedule though. I take 3 CR pills 3 X's a day

@ParkinsonsWigglesProject

Жыл бұрын

Thank you Tory! 🥰

Hey Jennifer, I'm taking C/L 6 times per day, CR and IR, it feels like so much. The red light therapy has really helped with the off periods, they are greatly reduced. Somehow I missed last weeks video. Will go looking for it.

@ParkinsonsWigglesProject

Жыл бұрын

Thank you David!! 🥰The video link is in the description, and it's on the David Phinney Foundation channel. I had never taken a daily medicine until I was diagnosed, so yes, it really does feel like a lot.

@geoffchandler4479

8 ай бұрын

@@ParkinsonsWigglesProject 6:18

Jenn, I was diagnosed 3+ years ago and prescribed minimum dosage 3x/day. In November 2023 my new MDS said I should take it an hour before or two hours after a meal. I find this to be excellent advice.

@ParkinsonsWigglesProject

4 ай бұрын

Thank you for sharing Joe!

Hello Jennifer, happy to have met you today. I was diagnosed in 2019. I’m taking 1 1/2 4XDAY but on rainy and cloudy days I feel worse……….maybe I should increase my doses on rainy days ? Thanks for sharing.

@ParkinsonsWigglesProject

11 ай бұрын

Hi Aurora! You should absolutely discuss with your doctor, that's what I did. We are all a little different while similar, for some it's a strenuous workout when they need more, or working a lot of overtime, but no doubt someone out there feels the same as you do on rainy or cloudy days. My doctor listened to what I said my body needed....like the week before my period I need to take more. Hope this helps ❤

Great video! As always Jennifer! It aligns with where I am with C/L. I am prescribed 1.5 to 2 tabs 4x daily. However, like you, my body decides. Sleep, stress, exercise, etc. changes the timing and sometimes the dose. It wouldn't be good for me if I didn't tweak the C/L as needed. Overall, I am taking less C/L now per day than when first diagnosed 8 years ago.

@ParkinsonsWigglesProject

Жыл бұрын

Thank you Bonnie!! Do you think you are taking less because of less stress from work? It's amazing that you are taking less C/L now than when you first diagnosed. Truly impressive!! 🥰

@martinedezutter4607

8 ай бұрын

​@@ParkinsonsWigglesProjectk

@hurain-sv8wy

8 ай бұрын

If anyone have symptoms of tremors in one hand, constipation, slurred speech, insomnia. Is it parkinson disease or not?????

@bonnieschwartz8087

8 ай бұрын

I wish I could tell you, or that diagnosing Parkinson's was an easier endeavor... Unfortunately, in my experience it seems to be a diagnosis of exclusion and can take some hit-or-miss testing. I can only recommend seeing a neurologist or movement disorder specialist and get them to start down the diagnosis path... @@hurain-sv8wy

Over 3 years I have gone 3 sinemet pills (8, 12, 4pm) to 3.5 pills (8, 12, 4) and now on my own to 6 pills (8, 10, 12, 2, 4, 6pm) in an effort to stay “on” through the day. My problems are remembering to take the pills on time so that I don’t lose my on state. I find it difficult without a nap to get back to an on state. Geoff

@ParkinsonsWigglesProject

Ай бұрын

I am a big time napper!! Short and sweet and sometimes even take two naps. Like you remembering if I just took my pill happens...I try to keep track and 99% of the time remember. Thank you for your comment!! ♥

Wow I'm a 47yr old male . I was diagnosed with early onset pd in 2005 . To say the least I've been through hell And back with pd meds . I'd say for 10 yrs now I've been taking 2 25/100 pills 6 times a day carbidopa levodopa and a 50/200 cr carbidopa levodopa at bedtime . When I'm on it's on PRAISE GOD! I can still do the things I've always done like play guitar/ write songs And sing . But the window of on time is small ,and most time it seems I'm off or have intense sloppy dyskensia which to me is nearly as bad as the pd symptoms. I also take Amandine 100 mg 3 times a day. GOD BLESS you mam ! You give me hope to cope ! Press on soldier!

@ParkinsonsWigglesProject

3 ай бұрын

Thank you Darius!! I have to say....Interesting that you bump up to 50/200 at night!! Never heard that before. I have tried Extended Release at night but I'm not convinced yet. Won't totally close the door but I am intrigued by the 50/200....then my question is, wouldn't that be the same as 2 25/100? Hmmm.....Thank you kindly for watching and sharing your story with us!! 🥰

I totally agree with you I think I need to take it when I feel off Starting to come on I'm supposed to only take it every 4 hours but I have been experimenting on my own and I do need more at a certain time I still need to see my doctor and talk to her about it

@ParkinsonsWigglesProject

2 ай бұрын

Hi Terry! Definitely a conversation to have with your doctor and hopefully she will be open and understand that there is a need for flexibility 🥰

Great question, Jennifer! When I was first diagnosed, I was prescribed 6 Sinemet a day which was too much. I spoke with my MDS and eventually came up with 1 pill every 3 hours, four times a day. This lasted for a few years. However, over time and with the progression of the disease, I now take a pill about every 1 1/2 to 2 hours. This can fluctuate day to day depending on how much food is in my stomach, amount of sleep, etc. I can usually tell when I’m due for a pill when my face feels stiff and my leg starts twitching. Thx!

@ParkinsonsWigglesProject

Жыл бұрын

Thank you for sharing with us!!

Thank you to give this opportunity to share and maybe to help. I'm 56. 4 years ago I gradually felt like being in a boat almost all day, like a kind of dizziness. I was feeling so tired that it was difficult to walk sometime, my leg didn't response as it was before which was so weird to experience. I was more and more slow and feeling exhausted for nothing,, I couldn't carry anymore, even a plate seems to be so heavy, my sense of smell was diminishing gradually, my writing was becoming smaller and smaller , talking was taking me so much energy that I was avoiding conversation and my body was sore especially my back as soon I get up in the morning. Socially it was devastating........finally almost one year after I've been diagnose PD. The neurologist prescribed 1 pill Carb/Levo 100/25 3 time a day, every 6 hours (6.30 am-12.30 pm- 6.30 pm°. From the first day I felt better and 2 weeks after almost all symptoms disappeared except the "boat-dizziness" which took 3 more weeks to disappear. During 3 month I was feeling so grateful to have those medicines because everything was almost just gone! ...but it came back so we had to increase to 1.5 I started to have some kind of tremors so we came back to 1. Nowadays, after some other try I take 1 pill of C/L mostly every 3 hours mostly 5 time a day. I noticed also the importance of the timing with the food, medicines works faster with an empty or light stomac, doesn't respond much with proteins and not at all with meat or too much of grease. the digestion became very slow. so I realize more and more the importance of what comes in my stomac and to chew well. I learned also that exercising and laughing are real medicine too...and faith and hope and love!

@ParkinsonsWigglesProject

5 ай бұрын

Thank you Isabelle for sharing your story with us!! I am thankful I didn't have the dizziness you described, the feeling of being on a boat. In Feb of 2020 I did a cross country Amtrak trip and was on the train for almost 60 hours to Chicago...a few days later I got back on to continue to New York. But when I got off the train in Chicago it hit me...this terrible internal dizziness that felt like I had just gotten off a boat. It was from the train ride and it felt awful!! PD is a challenging disease and laughter, love, exercise, pets, friends, and hope are indeed real medicine....We need all the tools in our tool box to help us live our best lives with PD 💕 Thank you!!

Oops! There’s more. I don’t take any at bedtime which is usually around 7 pm. I find that this plan works best for me according to my tremor severity. So far my sleep time isn’t affected. Thank you for this opportunity to share my experience. There’s nowhere around where I live that I can do this. In a way it’s been cathartic.

@ParkinsonsWigglesProject

9 ай бұрын

Thank you for sharing Jeff!! There are some great online groups for Parkinson's....All of my PD community is online. I know one person locally with PD :) Thanks again!! :)

Hello Jennifer , your looking great . I take sinemint 3 times a day for 4 months now . My shakes have decreased with the exception of anxiety and anger , besides that , i have not really recognized any differences . I have parkinsonism diagnosis and seems the meds are not working in my opinion . You gotta have a degree i think to just understand parkinsons , parkinsonism , a typical and parkinson plus . Have a safe memorial day

@ParkinsonsWigglesProject

Жыл бұрын

Hi Jerry and thank you for your comment!! It is a very complicated disease and challenging to understand all the nuance, but it can be done!! Hope you had a safe Memorial Day as well!

I take 4 Rytary and 1 Sinemet at 7 am then 3 Rytary at 11,3,7. I still work 40+ hours a week and on longer more stressful days I may have to take 1 or 2 additional 1/2 tablets of Sinemet as sort of a rescue dose. I try to be very regimented at the times I take the Rytary because if I take it off schedule I get Dyskinesia. I’m very fortunate to live close to a Parkinson’s center of Excellence and have a wonderful MD, and PA that work with me on dosing along with so much more. My advice if you need to adjust your meds in order to stay on do it.

@ParkinsonsWigglesProject

Жыл бұрын

Thank you Peter for the comment and great advice! It wasn't until I my diagnosis I realized truly how much stress impacts our bodies. They call it the silent killer for a reason and I believe it should be researched as a cause/trigger of Parkinson's. Having access to excellent health care is a blessing and makes a huge difference. While I drive 1.5 hours for mine, totally worth it!! 🥰

Hi, For about 2 years I took the dose suggested by my neurologist C/D 100 mg per day x3 per day. Listening to a lecture on utube I tried taking half the dose x6 per day and it seemed better except I couldn’t maintain a consistent pattern. If I miss a dose it is difficult for me to get back into the grove. My doc suggested 1.5 pills per day x3 and that works better due probably to my ability to remember the larger doses. Interesting that some people find vitamin b1 in the TTFD form improves symptoms. I am trying and notice a small improvement in stamina particularly for my back extensor muscles when doing the dishes in the evening. I don’t have to take a lot of breaks sitting down for five minutes or so.

@ParkinsonsWigglesProject

9 ай бұрын

Thank you Geoffrey! It seems to take all of us time to find our C/L groove 🥰

My experience with CL has been similar! I’m still working full-time at age 66, three years in my diagnosis. The one thing I would add: the amount of protein I eat GREATLY affects how well I assimilate a dose of CL ! For me, taking my dose on a nearly empty stomach, increases its effectiveness noticeably! On the converse, if I was to eat a steak dinner, and then take a dose afterwards, it would have almost no affect on me. I still have to do a certain amount of public speaking in my job, so I find myself mapping out an entire day of eating small amounts and timing my doses(usually three day) accordingly. That’s reality for me. Again thank you for your videos and your transparency! Great video. Thank you.

@ParkinsonsWigglesProject

7 ай бұрын

Thank you for your comment Bruce! Great to hear that you are still working....keep that body and brain moving! Protein is an issue now for me, but wasn't much of an issue for the first 5 or so years. Ten years in I definitely have to be more strategic, with protein. Though I will have the steak if I am really wanting a steak :)

@bruceandrews9996

7 ай бұрын

@@ParkinsonsWigglesProject oh yeah ! Don’t get me wrong, if I’m going to get into a steak and a quality glass of wine..I’ll enjoy it when I have no other commitments after the meal 😁 Enjoy life❤️

Just newly diagnosed with Parkinson’s started taking this.. 2weeks ago my dose was 1 1/2 my hand strength got better. Week 3 my walking is better. I really hope this stays I can wash my own hair again. 🥹♥️ happy tears my driving is better. This is start of week 4 I take 2 pills now. I’m 45 Thank you for this information. 🙌🏽♥️💪🏽 Kicking PDS BUTT ✨☀️

@ParkinsonsWigglesProject

8 ай бұрын

I instantly responded to C/L and it still works for me...in December it will be 10 years since my diagnosis. Happy tears I understand, because when I started taking it I felt like myself again...I felt like I had my life back. Parkinson's ninja I say 🥰

@lisacox9062

8 ай бұрын

Oh, this makes my heart happy! 10 years. May I ask if it gives you gnarly dystonia pain? I bought hand stress balls to keep my strength up. I plan on keeping up with my Brazilian jiujitsu been sitting on the bench cheering everyone and now I feel like I can get back to what I love. Hugs to you Parkinsons ninja 🙌🏽 Ps. I just started following you on Instagram as well.

@ParkinsonsWigglesProject

8 ай бұрын

@@lisacox9062 Yes I get dystonia and it sucks big time! But it's not always, which is perplexing and relieving. I have a dystonia video you should check out! Yay on Instagram I will follow you too! Yes keep up with the Jiu Jitsu!! Anything to that makes you feel good and keeps you moving :)

@ParkinsonsWigglesProject

8 ай бұрын

@@lisacox9062 kzread.info/dash/bejne/hqmhvK-jh6vFfLw.html

It depends. On the weekend my body requires less. During my work week which is stressful I have to take more

@ParkinsonsWigglesProject

7 ай бұрын

Thank you Tim!

Very interesting. I think there can be a bit of secrecy surrounding the subject and indeed, I noticed that in the video you didn’t actually disclose your medication history or current regimen. Although I did see you stated that in response to a question. I think we all measure our progression by reference to levels of medication and we’d all feel better about ourselves if we could manage on less. Do you think people are always honest when saying what we take? And everyone wants to be that person on 3x100mg after 7 years in!

@ParkinsonsWigglesProject

7 ай бұрын

Indeed there can be secrecy about how much medication we take. I discuss in more detail the progression of my medications (meaning how much I take and how it ramped up) in my Parkinson's progression video. Yes, I would so love to still be taking 3 pills a day :) but that is sooooo not my reality. In this video I got so focused on the timing of when I take Carbidopa/Levodopa, not the quantity, and the quantity is different everyday (the quantity of Amantadine and Rasagiline stays they same). I think this would be a great next video for me to do. Because our C/L prescriptions should be able to cover the range of our needs, not an exact amount and I think this is another thing that makes this complicated disease more complicated and people fearful to take another, or half of one if they need to. I am making this video today!! Thank you so much for your comment!! 🥰

Started off 1/2 tablet 3 x a day. 6 months later I increased to 1 tablet 3 x a day. Next week after another 6 months I will see my MDS. Pretty sure it will increase. I don't notice on and off but i notice lack of energy running/gardening and the greater need to nap

@ParkinsonsWigglesProject

Жыл бұрын

It took a while for me to get a real sense of on/off. I am a prolific napper 🙃 Thank you Rick!

God bless

@ParkinsonsWigglesProject

10 ай бұрын

🥰

I Started carbidopa/levodopa today, not sure what the difference, will be hopefully tremors will calm down. Not sure what to do so here I am On KZread. Thank You****Lost soul.

@ParkinsonsWigglesProject

2 ай бұрын

Hi Richard! In the beginning it is normal to feel lost but the Parkinson's community is here for you. Davis Phinney is a great resource if you haven't come across any of their videos. Hopefully your tremors will calm down. When I started taking C/L I pretty much had an instant response but for some it can take a little time.

Just started it 3 months ago. 3 x a day 25/100. Still trying to experiment the best times. Seems like I have offtime around 10 am and after 9 at night. Seems like I need more at times. Also ropinerol er 6 at 8 pm

@ParkinsonsWigglesProject

Жыл бұрын

Thank you for your comment Eric! Experimenting to find what it takes for you to feel your best is the way to go. Not sure if you've looked at any of the other comments but it's clear how widely we vary based on many factors but, I found a sweet spot and hope you find yours soon too! 🥰

I’m taking 1.5-2 tablets levodopa every 2.5-3 hours. My doctor told me to vary the dosage as I see fit. I was diagnosed 6 years ago at age 47. I’m looking forward to trying the pump if it becomes available.

@ParkinsonsWigglesProject

Жыл бұрын

Thank you for your comment! I’ve been wanting to get my hands on a cue 1 but it’s only available in the UK. Keeping my fingers crossed for both our wishes 🥰

@marykim7947

8 ай бұрын

​@@ParkinsonsWigglesProjectput

My Parkinson’s journey began two years ago when the tremor in my left hand got so bad that I could no longer down play it. A brain scan confirmed what I had suspected about five years earlier. I currently take carbidopa/levodopa 25/100 four times a day starting at 4am. Every 4 hours.

Loved this. I would love to connect with you. Do you do zoom calls? ❤️ Antonia

I started the PD meds Feb 2022. I take 3 to 4 Sinemet a day (depending how long of a day it is) and I recently started taking 2 Amantadine's a day because of weird hand and foot movements (dyskinesia). I've been taking the Amantadine for almost 2 months and I've seen improvement. I have a low stress job, I've never been a smoker, and I also exercise, do Red Light Therapy, and hit the sauna consistently (studies show benefits). I take prescription med for sleep so I get at least 7 hours a night (had terrible insomnia before sleep med). I rarely feel fatigued during the day and I'm not as stiff and in pain as I was before I started the PD medication and other alternatives. My hopes is to slow down progression as much as possible and that's what keeps me motivated to keep up the routines. Thanks for sharing and bringing up the topic.

@ParkinsonsWigglesProject

Жыл бұрын

Thank you so much for sharing!! I am loving to hear what other people are doing and hope people will find comments like yours and everyone else's helpful!! 🥰

@andrewalthuis3666

Жыл бұрын

I've had Parkinsons for almost 10 years. I only take 100% l-dopa extract from mucuna prurient. No side effects and no dyskinesia.

@SDWP

Жыл бұрын

@@ParkinsonsWigglesProject You're welcome! I forgot to add that although I started my meds in Feb 2022, I've been dealing with the motor symptoms for about 5 years. So, I really think what I'm doing is helping me to feel fairly "normal" after all these years.

@ParkinsonsWigglesProject

Жыл бұрын

@@SDWP While everything seemed slow with Parkinson's, or gradual I should say....my motors symptoms seemed or felt like they all came on at once...that's how I remember it anyways 🥰

@champ412

4 ай бұрын

How long normally it takes for the med to stop working after one take the dose?

NIce to find you today on u tube , but I did not hear how much leva dope that you take ? You commented about different dose , I was confused when you said 20 or 30 meds ? Thank you

@ParkinsonsWigglesProject

8 ай бұрын

My apologies for any confusion. I take 1 25/100 CL every 2 hours, sometimes 1.5 hours. I take 1 rasageline and 1 amantadine at 9am. 1 more amantadine at 3pm. This has been my routine for years now 🥰 Thank you for watching!!

I adjust as needed. Some days I can stick to a plan of scheduled doses other days I just need more for whatever reason. I have permission from the MDS (no one would want to be bothered with needy patient.) I think it happens as the disease progresses. Why would anything about PD stay the same and be simple?

@ParkinsonsWigglesProject

Жыл бұрын

Thank you!! And yes, why would anything be nice and easy with PD 🥰

I’m taking 3 Rytary 5x per day for a total of 15 a day. I try to stick with a 4hr schedule but depending on my symptoms may need to add extra C/L in between doses. One thing I’m learning is if I eat food too close before a dose then that dose does not work.

@ParkinsonsWigglesProject

Жыл бұрын

Thank you Rob!! The food wasn't a problem for me in the beginning but it is now, so I try to time it but it doesn't always work out. May I ask how long since your diagnosis?

@robcleminson7062

Жыл бұрын

@@ParkinsonsWigglesProject 6 years for me and like you food wasn't a problem before but i really started to notice it this year. My schedule is every 4hrs starting at 6am, my 6am and 10am doses are easy to manage but my 2pm dose is the problem as lunch between 12-2 seems to cause a problem. I find a prompt 12pm lunch just about allows my 2pm dose to work. If i'm still eating at 1pm I'm in trouble between 2-6pm typically. Scheduled for DBS in August and hoping i can reduce the 15 Rytary and 4 Mirapex......

@ParkinsonsWigglesProject

Жыл бұрын

@@robcleminson7062 Thank you! Watching what I eat I’d say started to be more of a problem year 6-7.

@ParkinsonsWigglesProject

Жыл бұрын

@@robcleminson7062I hope your DBS does as you wish and reduces the quantity of medications and makes you feel better! Stay in touch and let me know how it goes 🥰

IF you have acid reflux??? Take your Reflux med 45 minutes before your C/L- it increases the on time, so that you dont catch the shakes early. I caught hell with the c/l "wearing off" early until my regular doctor told me "take the omeprizole (sp) first.......the acid would break it down faster then a normal stomach would....IT REALLY HELPED me. I hope this helps someone... Im going on 6 years as a parky. 58 yrs old

@ParkinsonsWigglesProject

9 ай бұрын

Thank you!! My mom has bad acid reflux....lucky for me I don't. But it's totally true about acidic foods, oranges, orange juice, tomatoes, tomato juice helping breakdown the meds. Also sparkling water and ginger ale are other tricks of mine, bubbles, or carbonated beverages also. Thank you so much for your comment!! 🥰

Hello Jennifer, I’m experiencing dry mouth which is very annoying on every day, sometimes I m starting a sensation of burning mouth. Is this part of Parkinson’s progression?

@ParkinsonsWigglesProject

11 ай бұрын

Hi Aurora! I am not sure what med's you take but dry mouth is a side effect of PD med's. My dentist actually has me adding fluoride twice daily to protect my teeth. Saliva protects are teeth. I am not a doctor but I would say it has more to do with water intake and medications, but ask your doctor and then let us know what they say 🥰

Hello. Can you take madopar 15 minutes early or 15minutes late from th prescribed time?

@ParkinsonsWigglesProject

Ай бұрын

Is Madopar Carbidopa/Levodopa? It sounds like it's slightly a different mix...but this is a question for your doctor or pharmacist.

i am on 5 pills a day plus extra half pills when needed for sleeping or when eating too much protein

I wake up at between 2:30 - 3 am each day. I am a pd patient. How do I fix my sleeping hours? I need help

@ParkinsonsWigglesProject

Жыл бұрын

Sleeping is a challenge we all struggle with! It's always my bladder that wakes me up. Have you spoken with your doctor about your options? I know some people who take prescription medications to help....and depending on your age I've heard that menopause also disrupts sleep. I haven't really figured it out for myself yet, but I don't let my being awake stress me out. I will read, or sometimes write until I can get back to sleep.

Parkinson’s acts differently for everyone. However, I was surprised when you said your doctor started you with 3. That’s alot. I was diagnosed 9 years ago and I am up to only one and a half.

@ParkinsonsWigglesProject

6 ай бұрын

Interesting! I’m not a doctor but everyone I know started with a prescription for three but that some, like my mom would only take 1-2. Everyone is totally different 🥰 Thank you!

Hello Jennifer, hope you are having a good start of the week. Have you heard about John Coleman, naturopath in Australia who recovered from Parkinson’s. Is that possible? He mentioned that he has his own clinic for Parkinson’s.

@ParkinsonsWigglesProject

10 ай бұрын

Hello Aurora! If there was a magic diet or supplement to take or way to live to would make our PD symptoms disappear, none of us would have Parkinson's symptoms. I understand the desire and hope for a panacea, and living in California I am exposed to many alternative lifestyles/ideas for healthy living. But it is going to take more than a book, person, or persons to convince me that one way of living cured or made someone's symptoms disappear. I need science to back up someone's claims. Without tone of voice sometimes text can sound harsh in our minds and this is not my intention at all! Thank you so much for your comment and thoughts!!

I take one 125mg of madapar at 6am one at 11am and third tablet at 4pm. Contolls PD perfect.

@ParkinsonsWigglesProject

8 ай бұрын

Thank you for sharing! 🥰

Is this pill two medications into one?

@ParkinsonsWigglesProject

10 ай бұрын

Here is a great explanation....better than I could write 🥰 www.parkinson.org/living-with-parkinsons/treatment/prescription-medications/levodopa

I have gradually worked up from 3x199mg (levadopa) to 5x150mg per day plus 200mg controlled release overnight. Generally any increases have been asked for and given or increased at an appointment. Although the doctor seems a bit reluctant at the moment to increase the dose more. I use a rough every 3 hours for dosing, but flexing to keep the dopamine levels a bit higher by dosing earlier for exercise etc. If I'm away on holiday, and doing a lot more I go to 6x150mg. The medical staff, especially the specialist Parkinsons nurse don't like this and will lecture me. I also flex around meals (aiming for 30 mins before and 1 hour after a meal). I find that is the only way to avoid being Off at inconvenient times, like halfway through an exercise class or just before starting the mile walk home from the supermarket.

@ParkinsonsWigglesProject

Жыл бұрын

Thank you Colin!! Traveling kicks my butt and I am with you on needing more. Also with meals, in the beginning for me meals didn't interfere so much but they do now and it also depends on how heavy the food is. 🥰

@parkinsonsmysecondshadow

Жыл бұрын

I am similar I take 5 100 mg 1 200 mg cr for the night. Plus 2 50 madopar. I take one 2 hours in. Other one with a meal. Meal tend for me to reduce effectiveness. What works for u doctors have no right to lecture u. Ur life to live and what works best is my rule. Otherwise u may need DBS. But that's a doctor discussion. Not suitable for all and not without risk. Currently a path I am pursuing. Did the first round of assessments to see if it is suitable.

@ParkinsonsWigglesProject

Жыл бұрын

@@parkinsonsmysecondshadow Thank you for your comment!! What works best for you is a great rule 🥰

for myself 3 times day 6 in total

@ParkinsonsWigglesProject

Жыл бұрын

Thank you Mike!!

Firstly I must warn you I’m a nightmare for my doctors when it comes to PD management.

@alittlebitshaky

Жыл бұрын

Oops….I sent that comment a little early🙄…. I’m a registered nurse with a background in neurology. So right from the diagnosis I’ve been asking questions, researching and fiddling with my meds. But I feel that has enabled me to be taking the drugs I need when I need them. Some days I take 6 doses some days I take 3. I am lucky enough to still be able to work and I exercise constantly.

@ParkinsonsWigglesProject

Жыл бұрын

@@alittlebitshaky I feel so lucky too that I can get out in the fresh air and hike! Having inside knowledge I imagine would be very beneficial! 🥰 Thank you shaky!!

@alittlebitshaky

Жыл бұрын

@@ParkinsonsWigglesProject kzread.info/dash/bejne/fYKFyryQXcSTZMo.html

@andrewalthuis3666

Жыл бұрын

I take a 100% plant extract. From mucuna prurient. No side effects or dyskinesia. Been using for 6 years +. I was diagnosed almost 10 years ago.

you have problems with balance ?

@ParkinsonsWigglesProject

Жыл бұрын

Only when I am off, and get the shuffling gait with a stooped posture.

Greetings again, What dosages are you taking when you imbibe Carbidopa/Levodopa, (If this is too personal a query, I apologize) I feel like it's asking someone how much money they make... LoL

@ParkinsonsWigglesProject

Жыл бұрын

No worries : ) It 25/100

@ParkinsonsWigglesProject

Жыл бұрын

There was another comment/question from you I thought but I can't find it anymore?

@viproo6302

Жыл бұрын

@@ParkinsonsWigglesProject Thank you!

I take it as less as possible because it makes me sleep for long periods of time. I smoke marijuana instead during the day, which does not make me sleep and helps with the tremor.

@ParkinsonsWigglesProject

3 ай бұрын

When someone find what works for them YAY!!! I've had wonderful highs smoking marijuana and just as many not so wonderful. Tend to like low THC and mellow strains....some buds make me dyskinetic like drinking too much does.

Θα ηθελα να παρακολουθω αλλα δεν γνωριζω καλα αγγλικα....ειμαι απο Ελλαδα

I just take it as instructed by the Neurologist. 3 a day

@ParkinsonsWigglesProject

3 ай бұрын

Thank you Rosemary! ♥

You are hir

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