My Carbidopa/Levodopa Evolution...10 Years w/Parkinson's!
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- Опубликовано: 28 сен 2024
- As I approach 10 years since my Parkinson's diagnosis I discuss how much Carbidopa/Levodopa I take, what I call my Carbidopa/Levodopa evolution. I have learned the most about Parkinson's disease from other people with Parkinson's, and by sharing my story I hope to hear/get comments from others sharing their stories so that we can all continue to learn from each other.
**Sources With Links**
Carbidopa/levodopa dose elevation and safety concerns in Parkinson's patients: a cross-sectional and cohort design
bmjopen.bmj.co...
Levodopa Phobia
• Parkinson's Disease & ...
Carbidopa And Levodopa
www.mayoclinic...
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Thank you so much very informative
Thank you Linda! 🥰
I was diagnosed spring 2023. Doc says im about 10 yrs in. Im not to bad right now. Thanks for sharing your adventure. Im sure in time ill have my own ❤️
Thank you for your comment!! 🥰
So nice to see you're being a true warrior with this. I find it to be a prison at times I'm getting more and more difficult doing my job I take up to 20 pills at times some days! I really enjoy your videos and have tried to watch them as much as I can... I don't think you realize how much you're helping US with the videos you make so please continue! EVERYBODY NEEDS TO SHARE THEIR STORIES AND THEIR EXPERIENCE IS SO WE CAN FIGURE THIS OUT TOGETHER 😘 AGAIN THANK YOU FOR MAKING THESE VIDEOS😊
Thank you so much!! I agree that by sharing our stories and experiences that we learn and can come across ideas and treatments that we haven't thought of or heard of. Thank you 🥰@@chuckerpower2841
OMG finally someone is giving voice to what I've experienced. IMO this disease is analogous to diabetes -- you can't load up a diabetic with a fixed amount of insulin every day, regardless of what they eat, exercise, etc. They have to prick their finger to do blood tests, and they are taught to feel the signs of low or high blood sugar.
There really needs to be a revolution in treatment of this disease. My doc (he's great but...) pushes back on CL and I'm only at 5 pills/day. I absolutely feel the chemical waves I'm swimming in every day.
Keep up the great communication!!
Yes! Yes! Yes! I have a friend who is a Diabetic and we have had this conversation many times. And I so agree that there needs to be a revolution in how PD is treated. Thank you so much for watching and your comment 🥰
Wow! That is the first video of yours that I have seen and it was right on the money. Funny, I agree w it’s you that there are more differences than similarities, but for me in this case, it was wonderful to discover the similatrities. My original neurologist always emphasized that no two cases are the same, but that described living with PD while we are discussing treating PD.
I was diagnosed about 15 years ago and the neurologist was sure that It hit me long before I came to him. I started taking 80/200s 4 hour intervals 4 times a day. Things didn’t seem to be improving, but I. Stuck with it.
Over the course of time, I found out my cousin who lived in Denver, had PD. We had some great phone conversations and then he told me he and his wife were coming to town and bringing their golf clubs. We were in the kitchen the first morning we were together, and with PD being the topic of choice, my cousin told me about a new med he had been taking and all his friends were insisting he was doing better. Also, it improved his golf game! PD had ruined my golf game. I had gone down hill to the point that I wasn’playing anymore but I knew I would have a fun time showing them the courses nearby. When I heard his golf game had improved I was also amazed to find out that the new med was Azilect, the original version of Rasagaline. My neurologist had been giving me samples but they were stacking up In the cupboard because I was uncomfortable with taking more meds. This was one mg once a day in the morning.
Long story short, that was a few years ago and I am golfing again, but on a limited basis, mostly driving range or 9 holes., and I am improving.
Your Vid made my day. Oh, I meant to point out I’m a 73 year old male.
Yay that you are golfing again!! I know how much the things we love mean to us and then to have PD take them away from us, even briefly, but then a medication give them back to us is something to be soooo grateful for :) It is the surreal reality of PD. Thank you kindly for watching the video and sharing your story!!
Hello! I stumbled onto your recording today, and I'm so glad that I did. I don't like taking medications and I tried to leave it out of my body for as long as I could. I was diagnosed 7 years ago on the eve of my 55 birthday in 2016. I had my symptoms well under control for the first 3-4 years until COVID lockdown. I didn't take anything for the first year and relied solely on exercise. Then I started 1 pill of 25/100 C/L a day in the 2nd year. I never took the meds "as scheduled." I took them on a needed basis until last year. Last year, my symptoms got worse and I had to increase my meds to 1.5pill 25/100 C/L. My doc also added Rasiginline 1pill a day to make C/L last longer and also started 50/200 C/L at night to help me sleep better. Since my ON time is about 3-3.5hr, I tried to take the meds every 3.5hr to get me through work and then I skipped the med between 5pm and midnight. Taking meds as scheduled has its advantages, i.e., minimizing OFF time. So during the day, I felt great but then in the evening, since I skipped my meds, I felt terrible. Since my goal is to minimize medication intake, I decided to have DBS done this year (right before Thanksgiving.) I'm still in the adjustment period, but my (and my Doc's) goal is to eliminate C/L completely. Right now I'm taking 25/100 C/L 1 pill in the morning with Rasiginline and 1 pill 50/200 C/L at night. I'm going to try to remove 50/200 C/L shortly and add exercise back to my routine. Finding a doctor who would listen to your objective and guide you along the way is very important. Happy fighting!
Thank you Theresa for sharing your story! All of us who share here help all of us navigate Parkinson's and I find comments like yours a treasure. There are a couple of people I know with PD who are in the process to see if they are good candidates for DBS and others who are doing it. I hope that your adjustment period is as speedy as it can be, you get back to feeling normal again, and that your C/L reduction/elimination plan goes as you want it to! And please keep us updated on your progress...I am still fearful of DBS, and would love to know as many people as possible who have had the procedure. Happy fighting to you too 🥰
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Thank you for vocalizing something I often think but did not know how to express! This happens quite a lot with your work and I’m so appreciative for your clear strong and brilliant voice!
Thank you so much!! I truly appreciate your comment and kind words ♥ and hope you know that your voice is clear, strong, and brilliant too!!
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Thank you so much for doing these videos and explaining everything! I just got diagnosed this past Friday. I’m 36 years old and have been prescribed 25/100 3 times a day with 2 times a day the first week. I’m super early in this and I have already felt the benefits on the meds- however they don’t last and the muscle spasms I have and stiffness comes right back- It’s so wonderful to have another perspective while I wait to see the MDS in June. Thanks again❤
Thank you for your comment and watching! It took me time like I say to adjust to my Parkinson’s body. Talking with other people with PD has been vital in my understanding of the PD experience. We are here for you! ❤️
Thank you for all of your candid comments. You have valid reasoning imo. I take my doses on a day by day basis and it is nice to know I am not alone. I wish you the best in your PD journey.
Thank you so much for you comment and you are not alone!! I wish you the best on your PD journey as well : )
You don't even realise how brilliant you are ! Look at the response from PD sufferers questioning their medication worldwide. You can learn more here than from any nurse or neurologist because they don't have it. Example, try meds on starved empty stomach and clear bowels and see how fast they kick and longer they last.Keep up the investigative approach. Many thanks
Thank you so much Tom! I have learned the most about this disease from the Parkinson's community, no doubt. It's true that unless you have this disease there will be symptoms and feelings that can't fully be grasped without having PD yourself. Sometimes even with PD it's hard to grasp what is going on 🙃 Many thanks to you too!
I completely agree ! It’s as if she read my mind and figured out how to translate the tangle of constant frustration felt surrounding Parkinson’s medication!
Praise God I came across your channel. I'm 74 and diagnosed 3.5 years ago. I take 2 tablets of c/l six times a day, and your video hit all my own experiences I've encountered. God Bless You.
And! … JS is entirely honest in her work because her family members have been diagnosed as well. Consistently thoughtful and slightly irreverent in the best possible way about what part of this experience of Parkinson’s she chooses to share. For me she is in the arena of Kat Hill, Gavin Mogan, and Kevin Kwok, three more PwP I respect.
Oh thank you so much for you kind comment Gerald!! For me, hearing other peoples stories has been a life saver and I have learned so much from the PD community @@geraldb3511 🥰
Hello again Jennifer. ❤ What a pleasure it is for me to see a new posting from you.
I finally had the pleasure of watching “Still” by Micheal J Fox. That, along with your videos have been the greatest source of guidance and inspiration for me as I dissect this disease as it applies to me.
Most of the clinical assessments I’ve come across describing the “stages” I’ll encounter I reject. It’s just not my experience. Like you I’ve settled on a regimen that works for me . I take one 25/100 Carbidopa/Levodopa every four hours during the day/ nothing at night.
❤
Thank you so much Jeff!! And for the compliment that my videos have been a source of guidance and inspiration, my name along with Michael J Fox (WOW)! I am with you 100% about the "stages" but in the beginning I was too fearful to doubt or question the idea. Now I know better and while there may be a mean/average experience regarding progression these ideas if not properly put into context can be misleading. Thank you so much for sharing your story with the Parkinson's community and for watching my videos!! 🥰
Fabulous post, thanks for making it real. It gives all who reads it comfort. We all need different dosages.
Thank you David for watching and your comments…Sorry I just saw this one!! 🥰
Thanks for sharing your experience. I was diagnosed about 6 years ago and have been taking C/L and Entacapone since I was diagnosed. I started with one C/L 3 times a day with an entacapone with each dose. The entacapone is medicine that smooths out the effect of the dose over time. I am now taking 4 doses a day, one dose of 1.5 C/L pills and 1 entacapone every 4 hours, I also take Amantadine 3 times a day to control dyskinesia and reduce the severity of any off time. I find this works for me. Like you, I sometimes take an extra 1 or 1/2 C/L if I am not getting a good "On".
I can always tell when I am starting to go "Off". It takes me on average between 25 to 45 minutes for a dose to kick in if I have an empty stomach and I am not constipated, but it can take up to 1.5 hours for the pills to take effect with a full stomach. So I am always trying to time the pills with meals.
I also find that I have sort of a long term effect from the C/L and a short term effect. Some days I will just need another pill to get my "On time" to be "On" enough, but once I get the "On' to be on enough I am good for a few days and then I will need another boost.
My MDS is very good and she lets me control the level of C/L within limits.
Thank you for sharing your story!! This how we learn from each other and discover possibilities/options that we may haven't thought about 🥰
I have found your journey and the way you manage your medication very similar to myself, I fully understand when your body tells you it needs another dose and I also take a tablet. I want to live my best life now. Thank you for sharing.
Thank you Sue! Yes, I too want to live my best life now and for as long as I can....and that is what we are doing! Thank you for watching and comment ♥
Great message! I’ve been on C/L for 1yr/8 months. Luckily, I haven’t had to do too much tweaking yet. I started Amantadine about 5 months ago for subtle dyskinesia movements (2 pills a day). I believe it caused decreased appetite (working through that). I just recently increased my C/L from 1 to 1.5 pills every 4 hrs (take it 3x a day) and added an extended release C/L at night. Rolling over in bed has gotten a bit easier now. 😁 I consistently work out so I can feel optimal and hopefully extend the timeframe of needing another dosage increase.
Thank you for sharing!! I too just got a prescription for extended release at night and have only tried it a couple of times....so I am not sure just yet. I hope you're appetite comes back! Hang out with me and I promise I will take you places where all you will want to do is eat 🥰
@@ParkinsonsWigglesProject Hopefully we can make that happen next year! Sounds exciting!
Honestly, you speak so much sense! I have watched several of your videos all of which have helped and encouraged me. Keep up the good work.
Thank you so much for watching and your comment!! ♥
I’m speechless. This is the best and the most informative video. Thank you for putting your feelings and facts out there for us. I’m at 7 per day and it keeps me out of my wheelchair sometimes. I totally understand.
Thank you.
I am happy you have seen this video!! Thank you. Roger!! 🥰
Thank you so much for sharing this! I have been trying to explain this to my doctors. They are just so insistent on having me stay on a regimented dosing schedule. I have learned after 4-5 years that we have to be our own advocate. WE know our bodies, and we have to ask for what we need. A friend with PD told me about DHIVY. It is fabulous for "tweaking" the amount of C/L needed throughout the day. It is more precise than cutting a regular C/L in half and sometimes I only need 1/4 dose which can be done with the DHIVY pill.
Sidenote: I am not a rep for DHIVY and I do not work for or get paid by the company. 🙂
Thank you for your comment! And yes WE know our bodies and have to ask and communicate our needs 🥰I had never heard of DHIVY so here is a link to some information for others about it. www.michaeljfox.org/news/dhivy-carbidopalevodopa#:~:text=A%20tablet%20of%20Dhivy%20includes,tablets%2C%20such%20as%20Sinemet.)
Thanks for this - I'm 58 and I was diagnosed in late June (4 months ago) - I've been on the C/L and Rasagiline combo - I've been starting to think an extra dose of C/L here and there would do me good - I'll talk to my Movement Specialist about this - I've taken an extra half tablet when I was feeling heavy and needed to get moving - It seemed to work well for me also - Normally I take the extended release at 11 PM to go through the night - Then I take 1 C/L and one Rasagiline at 7am - Then one tablet of C/L at 11am, 3pm and 7pm - I do this along with strict protein avoidance 1/2 hour after and 1 hour before doses - I barely notice any symptoms on that regimen - But sometimes I do start to slow down with slurring of speech being the tip off - An extra half tablet gets me back on track - Your videos have been very helpful to me - Thanks so much for your efforts :)
Thank you so much for sharing with us what you do and how your body is responding! It takes time to get it dialed in....and for some of us it be relatively quick, for others an ongoing process. It took me a little while but once I found it, I have been where I am at for a long time and am so thankful that I finally got there 🥰
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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.
Always great to hear about people having good relationships with their doctors! 🥰
I've been taking carbidopa levodopa for a few months... still working on the correct amount to take and when. Thanks for all of your insights ❤ p
Thank you for your comment and you will figure it out....just be patient, it took me years to get it just right (you could be sooner)and listen to your body!! 🥰
@@ParkinsonsWigglesProject Thanks 😃
Stop taking it
Hi Jennifer! Your Parkinson's Wiggles Project showed up in my RUclips suggestions list today. Your guidance, experience and comments are spot on, thank-you for taking the time to share. I was diagnosed Sept. 2011 at the age of 55. I held off taking C/L for two years, believing the then opinion that us PD patients usefulness of Sinemet was about 10 years. In mid2013 I was participating in a Movement Disorders Society annual meeting in Sydney Australia of all places. I was fortunate at that Conference to be introduced to this tall, skinny bearded Dutch Dr. Bas Bloem. He basically put a boot up my butt and convinced me to start C/L as soon as I was back to the USA. I now into year 11 taking it. There so much to consider here as you so eloquently point out. I am a resting tremor dominate case with big time Dystonia. Experimentation is the life line here. I've been on and off Rytary since the drug came on the scene. It was affordable when I was working and had world class medical insurance. I'm 67 now and Medicare with an Advantage supplement only allows me to afford it half a year. When I hit the "donut hole" cost jumps from $47/mo to $1400/mo. Sinemet is just over $6.00 for 60 day supply, taking 1 & 1/2 pills every two hours. As you point out, I learn the most from other patients! I look forward to watching the rest of your videos. Keep up the good work!
Do you need to take it when you wake up night so you can fall back to sleep with less tremor?
Thank you so much for sharing your story and watching the video! "Experimentation is the life line here." Yes!! It requires patience and a doctor who is willing to work with you, and having good insurance is HUGE!! My rescue med Inbrijia I pay $120 for a 3 month supply, but someone else I know with different insurance was quoted $800. Knowing PWP has been a life saver on so many levels, as has this channel, and hearing from people like you!
I am not tremor dominant but take it in the middle of the night so I can walk and move. I move super slow when off and my tremor comes out a bit as well, but it's to help me walk and move like normal. The moment I wake up....whether 2, 4, or 5 hours after falling asleep I take a C/L. At the 2 or 5 hour mark I also get dystonia until the meds kick in.
Thanks for a very insightful piece. I'm currently on Azilect 1mg once a day and Stalevo 175 (125+50) four times a day and Madopar 125 as I need it (generally an hour before the Stalevo would be due this can put back the need for the Stalevo ) I've been on this ride for nine years now, it only changes. So folks make sure you can adjust your medicine if you need/want too, I've been lucky in that my Doctors have always allowed me to work out what I need. Remember they are your Doctor they are there to help you so educate yourself see what other people do that may help you as well.
Thank you so much for sharing with us what works for you! Always happy to hear that doctors are giving their PD patients options and flexibility 🥰
I think I should look into having this kind of talk with my neurologist. I can miss several of my doses in a day and not feel any different. I accidentally took a double dose for my nighttime dose and felt better. I had never done this before, but now, thinking back, I am tempted to try it again for real, but be more aware of my feelings about how I'm doing. Thank you for your very helpful website.
I couldn't imagine missing several doses, but I am also 10 years in to my PD journey. But yes, a chat with your neurologist could be most helpful!
Great video, Jenn! It's been 9 years since my diagnosis and I am still looking for the dosage that gives me the best results. Please clarify how many tablets of generic Sinemet you take in a 24 hour period, including day and night time. I realize this may vary but the average would be helpful know. I take 10 tablets during the day and some at night. Thanks!
If I wake up at 6:00 am and lets say I go to bed at 11:00 pm I would say about 10 pills. Then my bladder usually wakes me up 2-3 hours later so I would take one more then maybe back to sleep....if so I usually will wake up once more time before, assuming I wake up at 6am again, will take one more. So that is 12 in my example during a 24 period. Sounds like we are on a very similar routine 🥰
Yes, our routine does sound similar. I tried adjusting my dosage to the same total amount in a day, but with shorter intervals between lower doses. When I did this I felt sleepy and "drugged" which i never do with the protocol I have been using. So I'm focusing on increasing my exercise time and intensity to see if that helps. The desire to regain my pre-Parkinson's physical abilities is a trap I fall into sometimes. It's counter productive. Appreciating what is and working fro there is the the most helpful approach for me. @@ParkinsonsWigglesProject
I'm not sure how I could properly express the thanks for this video. I'm going for my dat scan In a couple of days, but I'm pretty sure I'll have a diagnosis by Wednesday everything points to it. I am terrified to take any type of RX. I'm terrified of side effects and if I can be honest I was a heavy drug user back in the '80s. (Who knows perhaps that's what caused some of these symptoms!). Anyhow your joy and bravery really spoke to my heart. Truly. I am learning what a lot of the verbiage is and I've been wondering why when I'm getting up in the morning my leg is so absolutely stiff and it has increased greatly over the last 2 or 3 months. My arm is a mess I've been off work for 3 months now And short-term disability and have to get back to work! Your video gave me hope! ❤❤️
Thank you for your message! I try to never say sorry to hear about your diagnosis and what you are going through, and go for welcome to the greatest community no one wants to be in 🙃 I sooooo understand not wanting to take any type of prescription, but for me with PD there was no choice...I had to do it and it gave me my life back. It is a complicated medicine because it is a complicated disease. Be patient with yourself and getting to know your Parkinson's body. It is a journey and you need to find what works best for you. Back in the day I took lots of psychedelics and wondered the same....Stress and heartbreak I believe is what triggered my early onset PD. There is some great research out there about diet and exercise for PD but pharmaceuticals are the best way to manage symptoms for Parkinson's and it also depends on what your physical needs are. I wish you the best and stay in touch and find a great Parkinson's group and try not to stress out about all that is going on, it's bad for the brain!! They are out there but you will learn soooo much from other people with Parkinson's!! ❤️
@@ParkinsonsWigglesProjectYou mentioned stress and heartache that's my story as well extreme over the top stress causing me to actually have physical reactions of shaking so bad I could not stand.... I also used psychedelics way back in the day as well as an extreme amount of amphetamines. I can't help but wonder the stress this put on my body is not playing into the PD. I'm new to the journey but I have started to find community already! Due to the heartache I have isolated severely, And now I see well maybe it wasn't what I had planned I can go out and be with people that have the same diagnosis, make friends offer and receive support! There actually seems to be a pretty good community here in Northern Colorado thankfully! One thing your video did for me was encouraged me to find a neurologist that will listen to me and my symptoms and not box me with everyone else! How long have you been making PD videos! So very kind and generous of you❤
Thank you. I thought I was the only one who juggled meds. This was very helpful xx
You are not the only one....thank you for your comment! ♥
You are a heroine 🦸♀️ I can’t imagine how hard it must have been to get this disease at 38.
Thank you Joe! Yeah, I couldn't believe my diagnosis, and I had just opened my dream business. It's not what anyone wants to hear at any age, but in your 30's is hard!
Hi! I've just found your channel and have been on a bender for the past 2 hours! Thank you for sharing so much useful information. I am 43, diagnosed at 35 and have such a love/hate relationship with the meds. #sideeffects 🙂I have been in a really dark space for the past several months, feeling like the meds just aren't doing it for me between the offs/ons & dyskinesia and dystonia. My neurologist is pretty cool about encouraging me to experiment with dosing, but I have been so scared and had such an aversion to taking more c/l, worried that the side effects will just increase exponentially. Not to mention feeling like an addict. But maybe I've been short changing myself and the highs and lows would be less dramatic if I took doses closer together? I'm feeling more encouraged now that I've heard your experience and read similar in the comments. We'll see how it plays out.
Hi Lauren...Thank you so much for your comment and sharing your experience! Each one of us, along with our doctors, have to decide the best course of medications for us to be on and to try. It's not easy because there really is no silver bullet. I am going to begin working on a new video today...and touch on the difference in my symptoms and side effects over the last ten years. The reality we face is kind of like a lesser of two evils...which one (side effect) can I handle? What are the pro's and con's of going one route over another? For me, I need to move. I still bartend and can do it with the wiggles. Don't know for how much longer but as I say in my video, it's my preference to be dyskinetic over moving like molasses in January. With my eyes open I made this decision and when and if it get's to a point where it's time to try something different, I will. Also, if you haven't already found a support group...one that is proactive and not all doom and gloom, I have learned SO much from other people with Parkinson's and all the different medications. I wish you the best on your journey and hope that you find your sweet spot!! Keep us posted!!
I feel like I am listening to my own story. Except I had symptoms 19 years, chased a rabbit for years, and finally got the diagnosis at age 49. The sinemet challenge was the differential diagnosis, with symptoms improving after the 3rd dose.
I was a CrossFit athlete, and it is thought, the reason I have progressed so slowly was because of my intense workouts. Funny thing is, my loss of balance doing box jumps, was the deciding factor to go back to the Dr and get to the bottom of it. That, being so slow in movement at times I literally thought I must be dying, and having trouble swallowing.
I take C/L 4x a day. I am definitely medicine dependent. If I miss a dose, I literally can not move faster than a snail. But within 30 minutes of taking my med, it's like the bandaid was ripped off, and I am alive again.
So far, no dyskinesia that I can tell.
My latest struggle is sweating. It drives me nuts. I just added creatine back into my supplements. I have heard it helps with cognitive function, so I would like to keep my mind clear for as long as possible.
I don't do cross fit anymore, my workouts have changed drastically, but maybe my 0500 workouts might be back in store for me. Mornings are my slowest since I don't have a dose after 8pm. But I am blessed. I am just thankful I finally got help.
I will keep watching your videos. I am learning a lot. And I like positive outlooks. Not gloom and doom.
Thank you so much.
Thank you for sharing your story with us! Years ago I had swallowing trouble right before a nap....so strange but I went to a speech therapist and problem solved. That one is scary! I also move as slow as a snail when I go off or my transition isn't as smooth as I hoped. Sometimes the transition is perfect and I have no off time, other days it's all over the place. And OH MY do I get sweaty and hate it!! It is the sharing of our stories, challenges, all of us strangers brought together because of PD.Thank you!!
Thank you for sharing your experience with C/L! I agree with you that it’s good to be able to adjust it depending on how you feel day to day. I was diagnosed in May 2016, started taking C/L in January 2018, initially 3x a day, then 4x, then 5x, then I started slowing down way way too much, and shuffling a lot, loss of dexterity to the point that it could take me 15 minutes to unbutton or button my pants. It was increased to 1.5 pills 5x a day, which worked for a year or so. Then I started having longer off periods about a year or so ago, 2 hours on, 2 hours off, with restless arms and legs most of the time. I tried taking the 1.5 pills every 2 hours and that worked perfectly. So I’ve been taking 13.5 to 15 pills/day since June. My doctor added pramipexole 3x a day which helped with restless legs, and substituted C/L controlled release for my last dose to help me sleep longer. This combination is working well at the moment but I wondered if I was taking too much. I started taking vitamin B6 (part of a super b complex pill) as my doctor’s advised due to the high level of C/L I’m taking. Thank you for sharing the article about folks who are taking high levels of C/L. I’ll try to find it.
Thank you for sharing your story with us!! There is a link to the article in the description but you can also search for it by it's title. That's great to hear you've found a combination that is working well! If I may ask how long have you had Parkinson's?
@@ParkinsonsWigglesProject Thanks for the link to the article. I have Parkinson’s for about 7.5 years. I was diagnosed when I was 41, and I am now 49.
Pretty young like me when you were diagnosed. If you'd like to stay in touch I am always curious about how others in my age range are doing....Stay in touch through comments on videos and you can also email me jennifer@thewigglesproject.com🥰@@onelyan
Will do. Thank you @@ParkinsonsWigglesProject
Always love your videos - keep going ❤
Thank you so much! 🥰
Yes. . .I wasn't scared of dyskinesia until I learned that 'crossing that bridge when I come to it' wasn't necessarily an option. Apparently, it is not uncommon for dyskinesias to persist even when medication reduced or even stopped. So hard to know what information applies to one's uniqueness. Anyway - I really just meant to say thanks for this and also suggest you get one of those silly grounding mats or blankets for your sleep. I'm now the poster child for these things when I was the biggest naysayer before trying. It all sounded so silly but come to find out they work! And they are cheap :) Thanks again!
Awe thank you! I tried one of the sleeping blankets and it was too heavy for me. I have the naysayer tendency too but I am open always to trying new things, within reason....and I love a nice blanket so I went for it....and I know plenty of people it does help ❤️
@@ParkinsonsWigglesProject actually - I was referring to a grounding mat or a grounding sheet. If you Google it, you’ll see it’s all the rage and I can confirm it truly helps one sleep. RUclips also has documentaries on it
I think of peptides as spices for the body to change direction in what it’s doing… like L-cysteine for lungs 🫁, gaba for sleep 💤, 5 HTP for etc….they all help in different ways and aspects.
Thank you, that was helpful, can you give more detail of your 'emergency' levodopa?
Hello! It's called Inbrijia and is a dry powder inhaler...so it kicks in faster than having to go through the digestive system...not sure if it's available everywhere but you should ask your doctor about it....some people have a hard time with it because it's inhaled but you can take small inhalations to help get used to it 🥰
Thanks, posts are very helpful ❤
Thank you for sharing, I had Parkinson’s since 2017 and take 250 /25 6 times a day I also take Ongentys 50 mg as an extension at 3am in the morning. I’m an active person and at 58. Years old I’m trying to make the most of every day. I also use Naproxen 4 mg patches they are a 24hour patch they are good in a dry climate but when it’s humid they sweat of and cause the medication to turn off and cause cramping in my feet so bad I can’t even walk on bad days I have to listen to my body and change a patch but I don’t remove the old one until an hour later.June 2023 was when I was at my worst.I had slowness,I sweat like I fell in the pool I was dancing and tremor I lost my one big toenail and damage my other big toe my body was running a marathon I was exhausted I sat a the local hospital they couldn’t do anything. They couldn’t speak to my neurologist he was away.To weeks later same thing happened nothing could help me.I went to my physiotherapist and I was still told me what’s hospital to go to.i spent two days there they track down my neurologist and came up with a plan with my doctor they introduced inderal an medication for epilepsy I started with one and now I’m taking 4 a day 6,12am ,4,&8 pm to settle my legs.I change my patches when needed and listen to my body L exercise every day stretching and yoga gardening being active.if I have a lazy day I suffer the next day.Its important to listen to your body’s take medication on time walking out your pain and ask for help from your friends and family it’s not what you can’t do but how can you do it ,sometimes we need help,one day at at a time .Kimmy QUEENSLAND AUSTRALIA TAKE CARE
Hello and thank you for your sharing your story! I am going through an insane phase of hot flashes....not sure if it's perimenopausal, or PD, or a combo of both but I get drenched with sweat when they happen, ugh! You take care too ❤️
Thank you for sharing. I'm in my fourth year of taking C/L. And I'm at 4 a day but I feel I need more.
Thank you for your comment and checking out the video : )
Thank you for suggesting to do own meds applications. Read the side effects. After 11 years of following doctors orders I saw I was having a lot of the side effects. I now am off all medication.
My case is curious.I was diagnosed as Myasthenia gravis for generalised muscular weakness in 2015 and treated with pyridostigmine, prednislone and MMF, I even started AIP diet, but contrary, my morning weakness and right hand weakness and stiffness continued increasing, prompted my neurologist to label as hemi parkinsonism in 2018 , since then I am being treated for both medical conditions. Ironically some drugs are contraindicated or having several side effects. My experience with levodopa is not pleasant. I have to take anti vomiting pill four times prior to one tab of levodopa combination. My addition of amantadine is not much helpful. My gait, my walk, my speech and drooling affected. I couldn't take dopamine agonist ,MAO inhibitor and anti cholinergic drugs due presence of MG and serious side effects. My neurologist is clueless. I need help, praying God, at age of 72, I need a miracle to survive!
Sorry to hear of the challenges you're facing! Have you tried to get a referral to a Movement Disorder Specialist (MDS)? Don't give up! I have a close friend with Parkinson's who had problems with nausea and couldn't tolerate C/L at all, but he is able to take now. Getting the right medications, mix of, and dosage takes time. But I would try to find an MDS and see what other options there are. I do hope you find the medicine you need to help you feel better! I believe there's always a way to find a solution ♥
Hi this is cheryl from trinadad i have pd about 10 years
I take 7 leavoda 100 mg per day its very helpfull
Hi Cheryl....I couldn't function without C/L, it is very helpful indeed! Thank you! :)
happy to hear from you
Thank you! 🥰
Thank you for this information. 🎉
Thank you for watching and your comment! 🥰
Hello lady, I admire your resilience as you have been through all these years. I recently I have been finding out about parkinson because a doctor told me I have parkinsionism but not sure yet anyways I was prescribed with Pramipexol which I feel no need yet until I will get second opinion with another neurologist next week. Anyways I read many side effects with parkinson drugs and one of them scared me. How what about hallucinations? Have you experienced them? Thank you for your videos, kindness and open book you are❤
Hi there! I haven't had any hallucinations thankfully. Bravo for trusting yourself! Not sure if you've seen my diagnosis video but I made sure and it was journey. It took me longer but I needed a diagnosis I could be confident with. I hope your second opinion appointment is a good one! ♥
Thanks for your perspective. (that’s a lot of shirts!).
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Recently found I was severely b12 deficient. Started a high dosage, diagnosed in 2018. I see my doc every 6 months. This was first visit I did not have to increase dosage. Which I attribute to the B12.
It is known that Parkinson’s patients are often deficient in b12. Has anyone else had this experience?
Yes. For me, the effect of taking vitamin B12 was as dramatic as when I first was put on carbidopa-levodopa. I was diagnosed in Feb 2021 and put on 1 tab 3x a day, 1.5, then increased to 4x a day. By March 2022 I had to be taking c/l 6 times a day. A real nightmare. With wearing off I had electric like shocks in my hands and legs jerks (myoclonus). It is all a blur, but somehow in searching on the internet I realized maybe I had a b12 deficiency. Started on 1000mcg and with a day no long had the wearing off symptoms. Then I read in Dr J Eric Ahlskog's book "The New Parkinson's Disease Treatment Book", page 426, that for his Parkinson's patients, his procedure is to "...treat everyone taking carbidopa/levodopa with...Folic acid (folate)-2.5 mg Vitamin B12-1-2 mg (1000-2000 mcg) Vitamin B6-25 mg." The reason is that "... the metabolism of homocysteine and levodopa use certain of the same cofactors: folic acid (folate), vitamin B12, and vitamin B6. In some (but not all) carbidopa/levodopa-treated patients, there may not be enough of these three vitamins to fully metabolize both levodopa and homocysteine." I starting taking this exact dose of folic acid, vitamin b12 and b6 with, as I said, dramatic results. I found I need a higher does of b12. I take two 1000mcg immediate release B12 in the morning and 1000mcg extended release. In the afternoon I take 500mcg extended release. My neurologist is indifferent to what I reported, but for me, along with later being put in Rytary, it is a game changer. See these journal articles: www.ncbi.nlm.nih.gov/pmc/articles/PMC6547038/, Reduced plasma homocysteine levels in levodopa/entacapone treated Parkinson patients.pubmed.ncbi.nlm.nih.gov/15390053/, www.michaeljfox.org/grant/relationship-vitamin-b12-status-and-parkinsons-disease#:~:text=Vitamin%20B12%20deficiency%20can%20cause,that%20B12%20deficiency%20is%20common.
thank you merci dear
thank you , so helpful !
Happy to hear and thank you for watching! 🥰
Thanks for this.
You're welcome! Thank you for watching 🥰
🙏 Thank you
Has anyone heard of high B1 thiamine dose therapy? I read a book B1 and Parkinson's! I started 400mg of Thiamax ttdf thiamine, 100mg L-Threonate magnesium, and 100 mg Potassium 4 months ago and though it hasn't 100% cured me it has greatly helped in every way with no side effects! I'm 58 and had PD for 4 5 years. I also take 25/100 MG carb/levo 3/day
Happy to hear you have found a mix of supplements to go along with your C/L that is helping you feel good with no side effects! We can all find our feel good zone, just takes some experimenting 🥰
I got denied life insurance because I take Carbidopa Levadopa. I am only 44 years old. I take 25/100 three pills three times a day. I was advised it was Parkinsonism. I tried researching the difference but they seem similar. I read Michael J Fox denied doing DBS surgery. I won't do it either. My other provider won't go off the diagnosis of a secondary doctor opinion. It's been difficult.
I would talk to another insurer...that's ridiculous! For many of us getting the correct diagnosis is difficult or can be challenging, so be patient, I know how hard that is though. From what I know, I don't know him but....Michael J Fox had a brain procedure called a thalotomy and regretted doing it. I am terrified of having brain surgery but it works for some people and not others....my issues are with gait and again from what I know DBS isn't effective for gait issues. Here's a good explainer on the difference between parkinson's vs parkinsonism and I wish you the best on your journey ❤️ Keep us posted! davisphinneyfoundation.org/parkinsons-vs-parkinsonism/
I love your smile.
Awe thank you! 🥰
Very interesting!
Thank you! 🥰
I have major dyskinesia and I also have left side dominant tremors. I'm so scared of taking too much medication because I'm an addict as well. So I push myself so hard to not over medicate that I often suffer. It's such a struggle I'm not sure how to handle it.
Hi! It is a struggle, and can take time to find the right mix of treatment. I hope that you have a good doctor who will work with you on finding your sweet spot with your medications. It sounds like you fear being over medicated leaves you under medicated that you "suffer." Don't forget the importance of exercise and diet.
Sound advice!
Thank you! 🥰
Thank You Wiggles :-) .... I'm 60 years old and I was diagnosed in August of 2018 (5 plus yrs). Like you mentioned i lost my mind as well when I received the news. Went into a slight depression and a lot of anxiety and still have the anxiety. I have all the symptoms as you, but I don't have too much dystonia (once in a while, maybe once or twice a week). I take 1 levo/carb 25/100 4 times daily (7a.m.-10 a.m. 1pm and 4 pm) I also take 1 Rasagline once a day. I am trying to avoid taking more, but i'm wondering if taking less will help me take less down the road? When I get to my off period it's like you, I all of the sudden get super slow, so I usually lie down for a half hour, until it's time to take my next Levo/Carb....I usually get the off period a half hour prior to my next dose.
I do exercise daily either by walking/Jog 3 times a week as well as Box 3 times a week and stretch daily for 20 to 30 minutees. I as well find I as well find that eating an hour before is not enough time almost 2 hours is necessary.
I tryo t not eat too much protein before 5 -6 p.m. Oh and the back/hips get sore prior to pill time and yes comes along with the off period.
On another subject, has anyone tried the gloves they are talking about at Stanford University??? Thank you all for reading and appreciate all of your hard work for us all Wiggles ...Louis
Hi Louis and thank you for sharing your story! I haven't tried the gloves but you can contact the Peter Tess Lab here...med.stanford.edu/tass-lab/media.html
I am waiting patiently for the Cue 1 from Charco Neurotech!! Hopefully will get approval next year...my fingers are crossed 🥰
I agree 100%
Thanks for your comment!
I'm wondering if she has ever considered DBS surgery
Me? Not yet. Curious to see where stem cell research goes 🥰
I'd love to get some feedback from you and others. Age 65, Just diagnosed with likelihood of moderate PD. Dr wants to give me Levodopa. I'm really uncomfortable with risks of delusions, hallucinations, psychosis, and dyskenisia. Thinking of holding off until my life feels majorly impacted.
HI! I have two videos you might want to check out if you haven't seen them. Here's one of them. ruclips.net/video/FMIwfhFXOZM/видео.html
Reading comments from others is a great way to hear what others think. Not everyone experiences side effects. I can't walk with C/L so for me dyskinesia is something I am willing to have when they happen. I haven't experienced any of the other side effects you've listed. And here's the other video ruclips.net/video/gj6KymzJapI/видео.html
Hi trying to find out About as much as I can regarding disease was diagnosed 1year ago
Hi Tony! There's the Michael J. Fox Foundation, Davis Phinney, and lots of great resources for you to dig into. It's takes time to get really familiar with all the terms, symptoms, ect and with what I call our Parkinson's body.
Please, can anyone tell me… is it normal to feel dreadful after taking the levadopa? My husband has to go to bed after he’s taken it, for an hour, sometimes 2 or 3. He can’t tell me how he feels, he just says awful…! ( not sick) Is this normal?
HIs doctor needs to know this and yes some people do not respond well to Carbidopa/Levodopa, that is totally normal. Every one is different. My mother in law can't take it and takes an agonist instead. I've known people who couldn't tolerate it their first few years with PD then were able to manage it....Everyone is different so definitely talk with the doctor.
Thank you Jenn for sharing ❤
Thank you!! 🥰
Do you have DBS? Thanks for your vlog
I don't have DBS. Thank you for watching and your comment! 🥰
I'm new to you, so you may have answered this in the past already, but have you tried or ever would try the pump?
Hello and I don't think I have discussed the pump in the past but I would consider it depending on my situation and if the C/L in pill form stopped working. I would research it, weigh all the pro's and con's and hopefully come to the best decision I could make with the information I have 🥰
What do you Think? 00 rytary instead of carbidopa levodopa
From what I have heard is that Rytary works great for some and not so much for others. But I don't take Rytary...it's a medication so it's something to discuss with your doctor if you think it might work for you. Totally worth asking your doctor about because it could be great for you!
Do you get nausea from the Carbidopa…how do handle that?
Thankfully I don't! I know people who have and eventually worked it out. One worked with a nutritionist and the other stopped taking and then tried again. Has your doctor recommended anything? Like Extended Release instead of immediate release?
Have you ever considered DBS instead of all the pills? I was diagnosed in 2012 and I’m up to 16 25/100 daily and my off times are getting worse. Not sure what direction to go. Thanks for your thoughts.
Hi Larry! I just had a great conversation with someone yesterday who is considering DBS. My problem is mostly with gait, and from what I know, and I haven't researched it thoroughly, is that DBS isn't as effective for PD sufferers with gait issues. One interview I came across gave me some hope. I can't find it but it was from this woman at Stanford. Closed loop vs Open loop technology for DBS is something I would love to know more about!! Here's another interview 🥰davisphinneyfoundation.org/an-interview-with-dr-helen-bronte-stewart-adaptive-dbs-for-parkinsons/
@@ParkinsonsWigglesProject Thanks again. 😎
What was the first signs of you having it?
The big ones... the left side of my body felt slightly paralyzed/weak, my left foot dragged, and I had an intention tremor. Here's one of my videos discussing my diagnosis 🥰ruclips.net/video/b-gODsv1qhY/видео.html
@@ParkinsonsWigglesProjectI have rest tremors in my toes fingers and internal tremors myself
What do you think of RYTARY?
Hi Diane! I haven't tried Rytary so I can't say. I have thought about talking with my MDS and asking friends with PD and those in my support if they have any thoughts/experience with it. At night I have tried extended release but it's too new in my routine and I have inconsistently taken it, for me to share my PD patient perspective. If you try let us here know how it goes for you!! 💕
For me, Rytary is great. About 13 months after my initial diagnoses of PD, it had progressed from needing 2.5 tabs of carbidopa/levodopa three times a day to six times a day! It was a nightmare juggling that with meals. For the past 8 months I have been on Rytary (61.25 mg of carbidopa/245 mg of levodopa) 3 capsules a day, 3 times a day. It has worked great. The first dose needs to be on an empty stomach, but for the rest of the day the timing of meals with Rytary is not as critical as it is with carbidopa/levodopa. Occasionally, I need to take a single immediate release carbidopa/levodopa tab to supplement the Rytary. Very expensive though, $4k for 90 day supply. Fortunately it is covered by my insurance and I pay $100 for 90 days.
Wow! That is expensive! It's great to hear that Rytary works for you...I have tried ER at night but haven't had much luck. I have an appt with my MDS in January and will discuss Rytary. My insurance is really good but I should call them first to see if they cover it. Thank you for sharing!! 🥰
Can a woman with yopd get pregnant
That's 21:02 minutes of saying the same thing over and over and over. I get it but I'll never get back those 21 minutes. I was diagnosed only 2 years ago and I already am up to 250mg C/L 8 x day. The Bradykinesia and the dystonia are excruciating and I'm thinking if this is what life is like 2 years in, I'm not long for this world
Thank you for your comment! I did my best to warn people this was an unusually long video in the beginning and there's no need to watch more if you are tired of it. But I wouldn't give up or say that you are "not long for this world." The ultimate point of the video is to communicate how complicated the disease is and cookie cutter medicine regime doesn't work for everyone. To communicate how complicated it is takes time. You can believe it or not and work on finding a solution, it's possible. It took me years to find a sweet spot managing my symptoms and that gives me hope that others can do the same 🥰
@ParkinsonsWigglesProject Thanks for your kind response. My apologies for my snarky tone, which I blame on the fact that I was 12+ hours into a record breaking bout of dystonia in both feet such that I was unable to walk b/c they couldn't bear any weight. Knowing that this can happen this badly makes med timing/dosing experiments super tricky for me. Ah, the good old days when I would wonder if I took my meds or not because now, there's no mistaking my zombie-like movements to prove that my meds are off. I'm just grateful that I made it to 64 before PD became part of my life.
@@kathrynaldrich5441 Wow! 12+ hours with dystonia is something I can't and don't want to imagine....I know how awful it is lasting/dealing with for 15 minutes. So sorry to hear!! But I do appreciate your comment and I understand....always try to keep in mind that we never really know what is going on in someone else's life or day, and we all have bad ones. I wish I had made to 64 before I got PD as well, my mom was diagnosed at 70, and me at 38!? Sending love and wishes for no more insanely long bouts of dystonia your way 🥰
Please ask your neurologist if you are a candidate for Focused Ultrasound Surgery. In two hours my tremors were totally abolished as well as the muscle stiffness to a large degree. Truly amazing. Non invasive too. Check out Tremor Documentary 2022. Best wishes!
I hate Parkinson’s disease 😢
It's a lemon for sure and while cliche I am doing my best to make me some lemonade 🙃
CRT g😅
So your tee shirt ? Very offensive to a Christian can u either explain or not ware things like this
I will wear what I damn well please! It's a shirt from Anderson Valley Brewing Company and a play on the legendary music NYC music venue CBGB's OMFUG "Country, Bluegrass, Blues, and Other Music For Uplifting Gourmandizers." It's offensive that you would tell someone how to dress.
Ty for yr reply, however not so kind, I apologize to u for not writing a better way. My mom passed of Parkinson’s at 84, one of the reasons why I happened to see this on RUclips. The husband God has given me recently is very much into bluegrass, and I became a fan ! I’m sure I should of never commented, please except my apology.
@@pattigibbons1331 I would say my reply was straightforward, not unkind. Women are attacked for many reasons, for their clothing, age, how they look, and what I am wearing in my opinion is far less important than my genuine intentions to share my story with Parkinson's. There's no need to apologize...you have every right to share your thoughts as I have the same right to defend myself and wearing that t-shirt. I am very sorry for the loss of your mother. My mom was diagnosed two years ago. It's a very challenging disease and it is our experiences with this disease that unite us, not our differences to divide us. We need a community of people who understand how difficult this disease is, and share the ways we can make our lives with it a bit easier 🥰
My tips: Keep a daily journal. Detail everything. What time do you wake up, when do you take your medication, what do you eat, how much exercise you got, even mundane weather details-one page per day, sixty-page notebook. Note little things like "an arm swing while walking (medication is working). End of the day, mark an "X" on the page in the right-hand column. Good days are "X" towards the top, and bad days denote towards the bottom.
I learned food made a huge difference! Things I have never considered affected my medication for the next three days.
We need to dial in how much medication we need to be functional, walking normally, arm swinging while walking, and foot lifting as we walk.
Once we know our optimum medication levels, only then should we adjust how often we need it.
Remember to take your medication on an empty stomach, with a full (at least 8 oz of water). I was on 1600 mg C/L daily, and after Deep Brain Stimulation in 2016, I was able to drop to 600 mg C/L daily.
Chewing 1/2 tablet, hold against gums with orange juice. I use that for rescue doses. Imbrajia is too harsh on my lungs, coughing fits (be sure to rinse with water to prevent thrush).
Year 40 of living with Parkinson's. Exercise is our best medication. Keep moving (yes, I need my meds before boxing, spin class, and even massage). Keep moving!
Thank you Tom!! Exercise is absolutely the best medicine along with keeping ourselves moving. And massage, yes, big yes! I also have a hot tub which I need to get a new cover for but a nice soak is a great way to start or end the day 🥰
40 years with PD??? 😮
You give me hope (I'm 13 years only...)
10 years with PD....not 40! There's still hope!! @@kamair 🥰
Im in my 23rd year of PD and I am still golfing.....lots of exercise
Yay! Love to hear this!! 🥰@@valeriecooper532
Thanks. One of the best and honest open videos on the subject I’ve seen.
Thank you Peter! There are great comments that inspire some of my videos and I am thankful 🥰
What a special person you are. Thank you for doing these videos as it gave me comfort in knowing what’s PD is and that the dosage of CL is different for everyone. I love your suggestions on taking CL with sparkling beverage for faster intake into your system. I will continue to watch and follow you. I was diagnosed 7 years ago. It is hard for people to understand that every day is different for us that have PD. I love you and am blessed to have found this video
Oh thank you so much for your comment Linda! You've filled my rainy weekend with sunshine ♥
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@@antonychamachaparampilchac2138 ❤️🤗❤️🤗❤️
You are a PD patient with the smarts to self medicate and listen to your body request signs. I had the same apifiny
I increased my 100/25 lev:carb from 2 every 6hrs with nothing at sleep time! I worked with my noraligest. I alsò found myself unable to fall asleep. First I increased the 25/100 Leva/Carb to 2x 3 times 21:02 21:02 21:02
@@TonyNigro-r8t Thank you for sharing your story and what works for you! I am at the point where I have to take in the middle of the night...before bed and as soon as I wake up 🥰
Wow, you are very brave for being so open about your PD and how you are handling it!
FYI: I am 65 and I was diagnosed with PD 15 years ago and I have remained functional and active. My dosing is similar to yours and I am now taking about 1 C/L and 1 C/L-ER about every 3 hours dynamically (depending on my accessed needs it ranges 2 - 4 hours) I also take 1 or 2 tablets of 0.5mg Pramipexole per day for restless leg syndrome as needed and THAT IS IT!
Where I am at now is that I don't know if my body is failing because of over-activity in my old age and what role PD plays in it. Because of PD I feel this is my time to do stuff while I can and it sometimes takes a toll on my old body. Over a dosing period, I might get some dyskinesia at the peak, but I take advantage of it by burning off the extra energy by doing high activity chores or recreation. My current Doc of 8 years told me that the key seems to be in taking just enough so that you stay pretty even and not go too high or too low. I have found that I dose not only based upon what I am feeling but also in anticipation of what I expect to happen like a heavy meal or a high cardio work-out.
Thank you so much for your comment and sharing your story!! Keep moving and pushing yourself, love hearing that 15 years in you're still functional and active.. I am with you on wanting to do as much as I can while I can, and while it takes it's toll we are living life and that is wonderful!! 🥰
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Oh my god, you've absolutely nailed it. I get so frustrated by the people that have to be so regimented with their timings. My consultant says I have a very complex regime, but it's like you say your body tells you when you need meds.
My personal preference is to be on the slow side even though it's uncomfortable (I have tried to explain to people how bad and inescapable it can be 😬). I don't know I just feel self conscious with the wiggles.
Thank you Craig! You nailed it with feeling self conscious with the wiggles....I get it and believe it can be overcome if that is where your comfort zone is. If your zone is on the slower side then be where you are most comfortable. Every now and then I get self conscious and then I let go, life is too short to worry if someone thinks I look goofy. Thank you for sharing! 🥰
Thank you! You have opened my eyes. I have had an unsuccessful DBS procedure 6 months ago and must rely on the Carbi Levidopa medication as and when my body needs it.
@@JanCalitz So sorry to hear your DBS didn't goes as hoped!! Do you mind if I ask what went wrong? Heather Kennedy is someone I know who also struggled after DBS.
@@ParkinsonsWigglesProject I will be seeing the Neuro Surgeon on 24 January. I will let you know! Thanks for the answer!
Thank you for sharing. I was diagnosed in July 2019. I found a MDS within a couple of months (he saw patients one day a week and I believe he teaches at UCSF the rest of the week). He started me on 25/100 C/L, one tablet three times/day. Over time it was raised to one tablet four times/day. A couple of years ago he added a 50/200 extended release at bedtime to help get me through the night. I am now on 720+ tablets (90 day supply), two tablets four times a day plus the one extended release at night. After my last session with my MDS he said I can take an extra 25/100 C/L if I feel like I need it. I am very young at heart; however, I am not YOPD (I have 13 grandchildren). What keeps me going now is music and grandkids. My medical issues made me quit playing music; but I read somewhere that music helps to slow down the progression of PD...so I bought a guitar and a couple of days ago I made a video. ruclips.net/video/z6ISO99k3pI/видео.htmlsi=57Xm6K4TvsZ6gwhI
Thank you for sharing your story Tim! I was almost a music major but went with Geography. Still music is my religion and I couldn't live without it. When taking music classes I remember my brain feeling a slight pain trying to comprehend harmony, chord progressions, playing the piano ect. As if the slight pain was from a mild headache as both hemispheres of my brain were trying to form lines of communication to each other. I absolutely believe playing and instrument is beneficial for the brain and neuroplasticity. A friend gave me a guitar recently and I have spent to little time with it. Your comment is a reminder to me that I should be learning to play and playing it!! 🥰
Thanks, I was officially diagnosed over three years ago. I am now retired but was having issues fifteen or twenty years ago. Everyone is different as is quite evident in the Rock Steady Boxing class I attend. Keep on doing the videos.
Thank you Tom! We are all different and I still need to check out a Rock Steady Boxing class🥰
Thanks for another great video. I was diagnosed in July 2022. Also started with 1 C/L 3x daily. Within a few weeks was up to 4x daily. Within a few months was up to 1&1/2 4x daily. This went on well until around my 1 year anniversary of diagnosis, when I start waking up each day with dystonia. On my own, I began taking a pill at around 1-2 am, when I always wake up to use the bathroom. It helped so much. I told my neurologist (after several weeks) and he was fine with it, and adjusted my RX to 1&1/2 5x daily. However I still only take 1 (not 1&1/2) for the 1am dose. I firmly believe that everyone knows their own body best and though these changes are subtle, they can make a huge difference. After 16 months, I am just beginning to recognize many subtleties about this disease and what affects symptoms. I have just gotten a referral for a MDS but can’t get my first appointment until June 2024! I strongly advise people with a new diagnosis to join a support group, find caring, listening doctors and do their own research! You channel is a great resource, very authentic and helpful. Thanks for being a friend along the PD path and God bless.
Thank you so much Carol! Happy to hear you will be seeing an MDS but wow, that it will take until June is unfortunate. The adjustment period is very real, mine was made most noticeable like you because of dystonia. I couldn't agree more about finding a support group, do their own research, and listen to their body! Thank you for being a friend and sharing your story with the Parkinson's community!! 🥰
Your welcome and much gratitude for all you are doing to help others on this path. I love the way your channel started: making something positive from a traumatic situation! I should say that I am also very grateful for my loving husband who is the best care partner a girl could ever ask for. ❤
@@ClarySage-70 Thank you so much! Yes, making something wonderful from a traumatic experience is a great way to turn things around. I am so happy for you that you have a loving husband that cares for and loves you!!! ❤ I am fortunate and grateful for my hubby too!!
@@ParkinsonsWigglesProjectwe
I have had pd for 3yrs and taking c.d for nearly 12months,as time went on i was trying to work out times and symptoms, wen i found out by taking c.d at 9am then 1pm then 5pm leg pain and feet and toe spasms or contortions as 1 utube called them have practically disappeared! I must add. I haav my alarm set for the above times to make sure i dont take the meds later. I had previous putting the c.d under my tongue melting it not even drinking water now i swallow the meds whole with all the water in the glass
Great video! I am going into year 7, 25 pills per day. You are right, the dr's, mds want us to stick to the routine. Not gonna happen. I take an extra .5 or even 1-2 more sinemet when needed. I need to be "on" as much as I can in order to function and power through my day. My diskenisia is really bad, I get three extra cardio workouts because of it lol!! DBS next month. Take care :)
Hey there and thank you for your comment! I hope your DBS surgery gives you the best outcome possible!!! Dyskinesia suck and can be exhausting when they are really bad. Mine fluctuate when I have them but when they are intense I work up a sweat 🥰
@@ParkinsonsWigglesProject same with me my dear friend ❤️👩🏼🦱
@@GoProGoalieUzi ♥
Jennifer you are a woman of extraordinary knowledge, compassion and intelligence. Please keep up your excellent efforts and be aware of how helpful your efforts and positive attitude are for so many others.
Oh thank you so much for your kind words!! I put so much thought, heart, and soul into these videos and it's so nice to hear that my efforts are helpful for others....That is my hope and intention 🥰
Thanks for this video! I’m recently diagnosed at 59 years. Trying to navigate this new me.❤
You're welcome! A Parkinson's diagnosis isn't easy....all of us with PD know how hard it is to hear. The bright side is the Parkinson's community, keep reaching out and find a group that you connect with....I wish I had done that sooner. I couldn't do without them and have learned so much from them!
Hi. I'm glad you have all these positive responses. Myself I have found exercise and a healthy diet works better for me. There are many things better than drugs just have to do your research because excellent studies are out there. Supplements can help , too. Just do the research.
Hi Christine : ) I hike every day with my dog and eat a healthy diet as well. I am a big fan of Spectrum Organics Flax seed and COQ10 but am cautious about supplements I take because they aren't regulated in the United States. I couldn't function without the dopamine replacement therapy provided by Carbidopa/Levodopa. I wish it wasn't the case but when I was given the C/L test to help confirm my diagnosis I could move again....I felt like me again and could run my restaurant with minimal symptoms. Thank you for your comment and sharing what works for you!
I take 1-25/100 every 2 hours and then I have added the slow release 145mg Rytary every 3 hours, helps me with the transition of be able to walk, otherwise when my carbidopa/levadopa runs out I have to sit until the pill kicks in, which is new on my 12th year, sometimes little dyskinesia and sometimes to much, everyday is different. I use a mechanics roller chair that I sit on if I can’t walk good and use my feet to push myself around.
I am so intrigued by your routine....because it is similar to mine but I don't take Rytary. I've tried extended release at night but took it instead of CL 25/100 and wasn't convinced. This is a door I might consider opening or trying but I get so hesitant to add anything new. When I was in Vegas recently I had to find places to sit a few times....it was just too overwhelming I think for my senses 🥰 Thank you for sharing ❤️
@@ParkinsonsWigglesProject it’s a pill with little slow release pills inside not the hard tablet, my doctor said works better.😃
I noticed you don’t drag a foot or turns inward, I started with slight tremor in left hand and foot started to drag and then I walked on toes on the left side only when off,now I must not have much dopamine receptors because I have to sit and wait for pills to kick in, I get dystonia in toes/feet and I get Botox in calves and bottom of feet for muscle cramps that helps greatly.
Cue1, Dr.Peter Tass parkinson's gloves
Great discussion Jennifer, we need that reminder that we are the ones who should adjust our meds with guidance.
Thank you David!! I am so thankful for my MDS and her willingness to allow me some flexibility. PD is not an exact experience from day to day or moment to moment, and when I need a C/L I am so thankful that I feel comfortable taking it earlier/when I need to 🥰
I agree, this call to self advocate is so important!
@@ParkinsonsWigglesProject yes, I have flexibility as well in my medication schedule and can take extra if I need to
Yes!@@therealkathleenkiddo
Do you take Levodopa in the middle of the night if you are up then? I have PD for about 13-14 years and take Sinemet five times a day (every 3 hours), 2 pills at a time during the day and a dosage of 2 pills in the middle of the night because I never, ever sleep through the night.
I do take it in the middle of the night. And like you never, ever sleep through the night. Thank you for sharing! 🥰
Hi Jennifer, I just recently found your channel. 2and 1/2 months ago I started taking Rytary. The extended version of sinimet. Do you have any problems with protein messing with your C/L ? I started noticing it several months ago while on C/L and now with Rytary. Also I’m a type 1 diabetic . So timing is out the window. My body can definitely let me know when I need the med. I started seeing a nutritionist, but so far not much help.
Hi Kathy! Yes, protein totally messes with my C/L but it's strange because sometimes it works with no problems. Have you heard of Laura Mischley from Seattle Integrative Medicine? You should look her up if not. Diet and exercise are so important with PD and because you are Diabetic it will be all the more important that you dial in a routine and diet that works for you. It takes time so be patient and find the right nutritionist/doctor to work on that with. Thank you for sharing 🥰
Thanks Jennifer for this new video ❤. I’m taking Apo levocarb 4XDAY 1 1/2 diagnosed in 2019. 7:00pm taking Pramipexole for my restless legs. 10:00pm CR and .25 clonozapam bedtime.
I was wondering why I have paradontol disease for my gums? Any recommendations?
Lately, I have brown stains on my teeth and my dentist don’t know why?
Hmmm, I have no idea what is going on with your gums or teeth. You could get a second opinion and see what they have to say about what's going on. I get crazy hot sweats sometimes and it's hard to separate what is causing it...is it an early menopause symptom or PD temperature regulation problems??
Thank you for the excellent discussion of your experience with C-L. I was diagnosed in April, and started on a dopamine agonist. The jury is still out on whether this is the best course and I’ve been thinking C-L is in my future. This video was very helpful. Thanks again for it!
Thank you for your comment! I didn't start with an agonist because I love shopping and playing poker too much :) Didn't want to risk going the side effect making me love the two even more. But I know people they work just fine for so I hope they help you too! 🥰
Thanks - so far, can’t say the agonist has been real effective, but here’s hoping. Have noticed an unusual urge to get fast food, which I resist (usually!). May explore switching to a C/L when I see my MDS next.
❤
I thank you for sharing and find what you have to say Very helpful.
I am a physical therapist and have two clients right now that have Parkinson’s and are completely different in their presentation
I feel after listening to you speak about your experience. It helps me ask questions and direct my patient care ❤
Hello and thank you so much for watching and your comment! Parkinson's is such a tricky disease to understand when as you say and see, two people can present "completely different symptoms. It makes me happy to hear that you've found my video "very helpful" as it is my sincerest hope to help others by sharing my experiences with this challenging disease. Thank you kindly!🥰
Thanks for sharing your experience. You help a lot of us to walk the maze of Parkinson's.
Thank you so much!! ❤️
I've seen videos where the MD says it is best to take C/L on an empty stomach. Take it 1 hour before or 2 hours after eating, and in particular don't eat protein with it. This would be impossible if taking the meds every hour or two. Do you find when and what you eat affects how you feel? So far I'm only taking the 25/100 C/L 3 times a day and still trying to learn what works best for me. I'm keeping my doses as low as I can to be just "good enough" due to fears of dyskinesia down the road.
For me it doesn't work like that at all. I am a grazer and eat throughout the day usually. I prefer to take my C/L if possible on an empty stomach but then eat something, like nuts, or a granola bar within 5 minutes. I lightly chew my C/L so it kicks in more quickly. My life doesn't operate on a regular schedule, and I take my next dose when I need it, and my reality is the timing changes. What is crazy is that sometimes I eat protein and have no problems, but then other times it interferes. I think portion sizing matters, if there's bread as well like a cheeseburger. Give it time and listen to your body. It took me a few years to dial it all in when I could feel the subtle changes. For me little doses throughout the day works best. You will figure out what works best for you too ❤
Thank you for sharing. I totally agree about listening to your body and adjust your med schedule as needed.
Thank you Sharon!! It can be hard for some to listen to their body when their doctors are saying something else. It became so clear to me and the physical demands of work left me with no choice but to listen and feel what my body needed. Thank you for your comment 🥰
(7:25) Where does it come from? That's easy- it comes from seeing the face of Parkinsons Michael J.Fox and his dyskinesia
Many people see the dyskinesia.... not that he has been diagnosed with Parkinson's since 1991, for 33 years. For many of us, we rather have too much movement than not be able to move at all. Each one of us decides for ourselves what is best or our preference 🥰 Thank you for your comment!
Wow Jennifer! Another fantastic video. The details that you provide and the way that you break things down is incredibly helpful. This is not information that we are going to get from our MDs. This is such a bizarre disease and it’s never as simple as “take this medication ‘x’ times per day.” There are so many variables and you do such a good job explaining why. You should write a book. Seriously! I’m so grateful for you ❤️
P.S. I am going to make sure that my YOPD support group knows about your channel. It has consistently been my favorite and most helpful by far.
Awe thank you so much for you comment and I am so glad you find the video helpful!! PD is a bizarre disease and it's never as simple as we would like it to be. I am so grateful for you too 🥰
Simply thanks with all my heart 💗
You're welcome & thank you for your comment!🥰
How about the DBS surgery?
My big PD issue is with gait and from what I have heard DBS isn't as helpful for walking issues. I haven't ruled it out completely but the other big hurdle for me is my fear of having brain surgery.