My Carbidopa/Levodopa Evolution...10 Years w/Parkinson's!
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- čas přidán 29. 10. 2023
- 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.com/content/2/6/e...
Levodopa Phobia
• Parkinson's Disease & ...
Carbidopa And Levodopa
www.mayoclinic.org/drugs-supp...
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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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
@@user-gw8qq2sd4n 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 🥰
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
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
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 🥰
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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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. 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 🥰
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!
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!
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!!
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 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! ❤️
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🥰
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 Jennifer. Good editing great information.
Thank you so much! This video took almost a week to research/bullet point, edit, and make.
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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Thank you so much for taking the time to post these videos with such great detail.
Thank you for this comment!! Some videos are a lot of work, it's worth it though, and it's nice when it's noticed : )
Yes ma'am....I'm glad I found your channel. I've been dx'd since 2016 and I see so many similarities.@@ParkinsonsWigglesProject
Simply thanks with all my heart 💗
You're welcome & thank you for your comment!🥰
Thanks, posts are very helpful ❤
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!! 🥰
Always love your videos - keep going ❤
Thank you so much! 🥰
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 🥰
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 your channel and forum..
Thank you Brian! 🥰
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.
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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!! 🥰
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. ❤
@@carolbixby-mcdonald5660 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
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 : )
Thank you for this information. 🎉
Thank you for watching and your comment! 🥰
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
thanks! what an encouraging video!!!!!
Thank you!! 🌺
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 🥰
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! ♥
Awesome look into flexibility of medication.
My wife was diagnosed 2020 (crap year that it was). She ie regimented but this opens discussion doors.
Thank you so much! Im subscribed now!
Thank you for sharing! I encourage everyone to read the article I cite in the description. And to read the comments from others.....we learn so much from others with Parkinson's!! 🥰
Same with hubby. Bad year, that 2020.
Echoing others in saying thanks for this. I was diagnosed earlier this year and due to complications with Crohn's and absorption, my daily C/L count is already high and it worries my wife. This video has given me ideas on new things to try and I think it'll help her understand that there are worse things in the world than dyskinesia.
Thank you! In the description you and your wife should read the study I cited about going over the 8 pill threshold. Parkinson's is so complicated and doesn't operate on the clock, there are too many variables. Thank you for sharing 🥰
Thannnnk YOU! I can finally make a bit of sense about this medication for PD! My youngest brother has Parkinson's and he's just started on C/L meds. He was dx with Parkinson's disease only recently but I believe he's had it for Years and Years. His symptoms just got WAY worse over the past year and so he went to see a neurologist.
Yes, he is on 3 tablets a day for now. And he's having a crazy time getting his body chemistry used to taking this medicine. But it will be worth it so that he can start to be able to Function once again!🙏 I live with him and his wife so I have watched his decline this past year and am now very Hopeful for his progress! Wonderful video and explanation of how this medication works for You from day to day!💜
Hello Gloria! Take notes and talk with the doctor about how your brother is adjusting. I hope he starts feeling better and gets back to something resembling normalcy! It took me a long time to get used to what I call my Parkinson's body,
thank you for your channel. I was diagnois 7 years ago. I am lucky if the doctor sees me once a year. All the PD information I had to find on my own. Our area and surrounding do not have any resource for PD. Sooo Thanks so much for you and your channel
Thank you for your comment and watching! I get it and do a lot of digging myself...talking with other people with Parkinson's has been one of the most helpful resources for me ♥
Thanks for this.
You're welcome! Thank you for watching 🥰
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 🥰
Thanks for sharing with us. My husband has PD.
Very interesting!
Thank you! 🥰
thank you , so helpful !
Happy to hear and thank you for watching! 🥰
Hi Jennifer! Your Parkinson's Wiggles Project showed up in my CZcams 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.
happy to hear from you
Thank you! 🥰
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.
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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 ♥
Sound advice!
Thank you! 🥰
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!
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
Thanks for your perspective. (that’s a lot of shirts!).
🥰
thank you merci dear
Exactly. Thank you
Thank you! : )
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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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!
🙏 Thank you
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 🥰
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. czcams.com/video/z6ISO99k3pI/video.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!! 🥰
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
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!
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
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 was diagnosed in 2015, started at 5 Sinemit a day and currently up to 20 per day. All I can say is I am still going for my daily walks, stretching, pushups and sit-ups. But I have moved into an assisted living facility. At 56, I’m the youngest here, but like I said I’m still going good. No, visions etc, only once in a while a little brain fog.
It's great to hear you are still going for walks and good! I cherish every day and every walk....even the ones I occasionally freeze on. Thank you for sharing your story! ♥
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!!
Thank you Jenn for sharing ❤
Thank you!! 🥰
Thank very much for your sharing. I am a new parkinson patient. I feel distressed.
There is hope ! Keep researching You’ll learn that you can have a happy and fairly healthy life. I highly recommend a PD exercise program like Rock Steady Boxing. Great for slowing disease progression and good support from others who have PD too. Hopefully you have a good movement disorder specialist. You’re going to be ok!
Hello! Sometimes comments get shuffled away from notifications so I am just seeing this. When I was diagnosed I got a therapist to help me process what it all meant. It's not what you want to hear but the one thing I have learned after 10 years and having this channel is that you still have a lot of life to live!! Like @kellyrios5394 says, "You're going to be ok!"
Thank
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 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 so much for sharing this. I will talk to the doctor about taking more than 3 pills per day. I hate being so slow.
Hello and thank you for watching...I don't like being slow either, it's so frustrating! Cheers to moving as normal as possible :)
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! ♥
I wish I could get Inbrija here in the UK... could have really used it today. To even out the dips in between doses I have a transdermal patch called Neupro (rotigotine) which is replaced every 24 hours. I 've had my diagnosis for 8 years and being an old fart am fortunate enough to not have all of your challenges. Keep o keeping on.
Hi Peter! Yeah, I am so thankful for Inbrijia! Do you have the chewable/dissolvable kind that are quick acting? It's called Parcopa here (spelling ?) but I think it has been discontinued here. Bubbly drinks like sparkling water totally help along with chewing up my C/L to help it breakdown/kick in faster. You keep on keeping on too!! 🥰
I love your smile.
Awe thank you! 🥰
Thanks so much for this. Would you mind sharing the name of your Movement Disorder specialist at Stanford?
Dr. Laurice Yang 🥰
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! 🥰
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??
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!
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 ♥
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 🥰
Hi! I was diagnosed in 2019. I too have been taking “more than I’m supposed to” of Levodpa. Lately my tremor (during off times) has been more intense and longer lasting. I’ve tried add on drugs but they haven’t helped. I think I need to increase my Levodopa whether or not my doctor says not to. Also I’m considering ultrasound. Your thoughts?
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.)
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 🥰
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 there could you expand on your use of the emergency imbrejia? Do you knock it up yourself and is it effective, many sufferers would be interested also what's with the chewing of tablets, does that help quicker when in a degree of trouble?
Hi Tom! I do put the Inbrijia together myself, and I know one person who's complained about how hard it is to put the pill in the inhaler. This is true, 99% of the time I have no trouble doing it myself, but my husband will help me sometimes. Another issue I've heard from people is it's weird to inhale a dry powder. I am a smoker so it's not for me, but what helps is to take many small inhalations, instead of all at once. The chewing of the tablets absolutely helps me. If I am going to be eating protein, or if I already have eaten. I have just experimented to see and like I said sometime I will chew just half, or take a couple of chews to just break it up a little. The biggest helper along with chewing if I am in a spot where I need it to kick in asap, aside from the Inbrijia, is sparkling water or ginger ale 🥰
Do you have DBS? Thanks for your vlog
I don't have DBS. Thank you for watching and your comment! 🥰
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! :)
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.
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 ❤️
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.
I agree 100%
Thanks for your comment!
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! 🥰
I have Parkinsons since 2010 but wasn't diagnosed until 2016. I'm on 3 25/100 rapid release tablets 4 times a day. Seems to be not working as well as it used to. I now have Imbrija that I'm going to try but am sort of apprehensive as I can't seem to find much about it. There are several vids on CZcams but the comments are disabled. What's up with that? Went to my local pharmacist and he couldn't find much about it. I'm running out of options and this area seems to lack qualified Medical specialists in this area. I live in western NY. Any recommendations would really help. Thanks.
www.inbrija.com/
Hello! There website has a lot of great information about it. One trick that I learned, is to take many small inhalations instead of inhaling it all in one puff. I am a smoker and got used to it pretty quick but other people who have tried it couldn't handle inhaling it. To find an MDS in your area I would check out MJFF and the Parkinson's Foundation websites....Davis Phinney may also have a list of specialists. I live 1.75 hours to Stanford for my MDS and have no problem making the drive to see her. Totally worth it in my opinion....not sure how far you are from NYC but that may be your only option. Check those sites and see, you just might find a specialist closer 🥰
@@ParkinsonsWigglesProject
Thanks for the info. I never smoked so thats what I was afraid of. What happens when you do take a full hit? I do belong to the MJFF but most of what they offer doesn't help me. I live west of Rochester so that would be a difficult trip for me.
Bravo!!!! 🎉thank you for this… you are 100% correct that you have to listen to your own body! I’m taking 4 c/l per day since diagnosed in June 22. Just now considering adding 1/2 pill more per day
Thank you Lisa!! 🥰
Can you tell me why you take your amantadine before three? Is it a sleeping issue, or something else?
Yes....It was recommended by my doctor to take before three because it can disrupt sleep. Though I regularly take naps and usually it's after three, sometimes earlier 🥰
@@ParkinsonsWigglesProject I am a pretty good mapper also!
My husband has Parkinson's, and dementia, he is 85, it seemed to happen at the same time and that was in 2021. before the lockdown in 2020, we went to the gym every day, he would do 20 min on a treadmill and various machines. After the lockdown, we did not want to go out in public due to covid and he already had some lung problems. Then it was a year of no exercise, we bought a treadmill and he was unable to walk on it and I really noticed that his walking gate had changed a lot and his left hand had a tremor. In 2022 he was diagnosed with Parkinson's and vascular dementia. He has also had some psychotic episodes I tried to give him the C/L and the psychotic episodes became worse, so he is not able to take that, we are in the Philippines and they have not suggested any other meds. So he is always very very slow. I had to go on a very low-carb diet because of pre-diabetes. Because of that, I found the Keto and Carnivior diets. I found it interesting what you were saying about the protein affecting your medication. I am doing a very not perfect Keto but low carb. I have been watching a Dr. (residency in Neuro-surgery in Perth Australia) he believes in the Carnivore diet and his dad had Parkinson's and went on the diet and is in remission. He has never done a video talking about it but has mentioned it on his live streams. His name is Anthony Chaffee MD if you want to look him up. I have wanted to try it on my husband but with his dementia, he would get so confused about why he doesn't have his rice. Well this post is too long but your videos are very interesting.
Thank you for sharing your husbands and yours story! A healthy diet is so important, but Keto is very difficult to adhere to and is recommended for a very small number of people. Also from my understanding it can be dangerous unless done with supervision of a doctor. Keto is no joke! I strive to eat a Mediterranean diet but often fall short. If a special diet of any kind was proven to stop Parkinson's no one would have Parkinson's disease I believe. Though we all should be open to taking a new approach, because it might provide relief, so long as it is safe. Thank you for watching!!
@@ParkinsonsWigglesProject Thank you for your reply, I might have miss stated the way I said about Dr Chaffee's dad, the way he said it was he has not progressed any further. But it is something I am not going to do for my husband even though I got my labs on Keto and they were good. I am not pre-diabetic any longer. I do want to try the Vitamine B 1 therapy. Our daughter is coming tomorrow from the States and she is bringing the type of B1 that is in the book. It is the type that melts under the tongue.I just want to help him so much. Thank you again for your reply.
I follow Dr Chaffee and my Mum has PD. She’s 82. With respect, Keto is NOT dangerous. It’s just a way of eating that’s low carb and no processed foods. There is nothing fanatic about it. Doctors in Australia are really starting to encourage their patients to eat this way for good basic health. It’s been around since the 1950s for epileptics. Low Carb Down Under is a good place to start to learn about this lifestyle from professionals. My Mum is following this in a fashion, but makes sure she doesn’t have the medications with food, always a minimum of 30 mins before or after a meal and that meal always contains protein. Good luck to everyone.
"A ketogenic diet has numerous risks. Top of the list: it's high in saturated fat. McManus recommends that you keep saturated fats to no more than 7% of your daily calories because of the link to heart disease. And indeed, the keto diet is associated with an increase in "bad" LDL cholesterol, which is also linked to heart disease.
Other potential keto risks include these:
Nutrient deficiency. "If you're not eating a wide variety of vegetables, fruits, and grains, you may be at risk for deficiencies in micronutrients, including selenium, magnesium, phosphorus, and vitamins B and C," McManus says.
Liver problems. With so much fat to metabolize, the diet could make any existing liver conditions worse.
Kidney problems. The kidneys help metabolize protein, and McManus says the keto diet may overload them. (The current recommended intake for protein averages 46 grams per day for women, and 56 grams for men).
Constipation. The keto diet is low in fibrous foods like grains and legumes.
Fuzzy thinking and mood swings. "The brain needs sugar from healthy carbohydrates to function. Low-carb diets may cause confusion and irritability," McManus says.
Those risks add up - so make sure that you talk to a doctor and a registered dietitian before ever attempting a ketogenic diet.
www.health.harvard.edu/staying-healthy/should-you-try-the-keto-diet@@KetovoreAnita
@@ParkinsonsWigglesProject yes Harvard is supported by over 300 million dollars through a plant-based agenda. Duke University has studied Keto for over 20 years Dr Westman through Duke gives more informed information, with exact data. All of Harvard's risks said "may" or "could" never "does". Unfortunately, this is a war between Grain/Sugar companies who have deep pockets vs meat companies who are struggling and our health is the battleground. God bless all of us in any diet lifestyle we choose, we are all just trying to help our health. I love your videos, I think you present yourself in a wonderful way. God bless you always.
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.
I am right hand tremor dominated ... 4ish years in ... take Prolopa which is levo ...combined with something other then cardopa ... plus ...2 Amantadine ... am curious on tremor dominated people's experiments with dosing .... i take extra to go back to sleep to lessen the tremor etc and extra when the tremor is elevated at times during the day etc ... I think I need to increase my dosage soon and more frequently seeing it is not enough lately etc
Finding our sweet spot with our medications is an ongoing process and an art.....getting to know our bodies, what it needs, how our body changes as time passes and the disease progresses. Thank you for sharing with us! 🥰
How do you pour drinks in glasses with dyskensias? Don't you drop them?
Hello! No I don't drop the glass....I've spilled water when going for a sip but never have dropped a glass 🥰
What was your experience with rasagiline?
Tank you
The doctor prescribed me rasagiline as monotherapy.
It will be my first medicine...
I confess that I am afraid of the side effects...
Essentially I'm afraid it will change my personality.....
It has been a good addition for me, very mild. It is my hope it will slow progression....the research never confirmed for certain it did slow progression but I decided to add after talking with my doctor 🥰
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.
Was diagnosed Feb 29 th put on carbidopa levodopa this pass Tuesday 3 pills a day have had some bad side affects called neurologists today his nurse told me to immediately stop taking it and set me up for a appointment Wednesday so we will see what happens as of now no pill in over 15 hours and no tremors.
Yes! No medicines that give "bad side effects" should be taken. I hope your appointment went good and that you find a treatment that works for you!
@@ParkinsonsWigglesProject my neurologist has taken me off. The meds till I can have a ekg done was having chest pains when walking a lot but. Only while on the meds I walk 5 mikes a day at my job
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!