Parkinson's Disease & Levodopa Phobia
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- เผยแพร่เมื่อ 11 พ.ย. 2022
- What is Levodopa Phobia? For some people with Parkinson's (PWP) it is common and "consequential." I am not a doctor and approach this subject as someone with PD. But when I was diagnosed I encountered the myths I discuss in the video. These myths are still pervasive and it's essential they are understood and debunked.
This was the most challenging video of mine to make because this topic is so important! What medicines we decide are best for us is a personal decision. But having accurate information when making these decisions is essential. It's my ultimate hope to spread the word about Levodopa phobia and inspire people to have their own conversations with their doctors, families, friends, and do their own research.
Resources:
"Levodopa Phobia a review of a not uncommon and consequential phenomenon."
www.ncbi.nlm.nih.gov/pmc/arti...
Ask The MD: Myths About Levodopa
• Ask the MD: Myths abou...
www.michaeljfox.org/news/dysk...
www.michaeljfox.org/news/medi...
"With long-term use of levodopa (as well as longer duration of Parkinson's disease), complications may develop. These can include dyskinesia or "off" time. Dyskinesia is uncontrolled, involuntary writhing or wriggling movement. It most often occurs when symptoms are otherwise well controlled (known as "on" times). "Off" time is when symptoms return before your next medication dose is scheduled. It can come on gradually or suddenly and unpredictably and can alternate with "on" time throughout the day."
www.apdaparkinson.org/article...
"MYTH #2: Levodopa loses effectiveness over time
FACTS: It is true that over time, people with PD tend to need to take more levodopa. As the progression of PD takes place, there are fewer dopaminergic neurons in the brain that can produce their own dopamine. A person with PD tends to need more medication containing dopamine to compensate for these changes. Therefore, a higher dosage of levodopa over time does not mean that the medication is no longer working; it means that the disease is changing."
The article below I cite as an example of bad information we inevitably will come across online. This statement is infuriating! "In general, dopamine's potency will wear off after three years."
The danger is when some truth are mixed with untruths.
www.verywellhealth.com/when-s...
You forgot to mention the hallucinations and panic attacks that Levodopa can cause :)
Thank you! There are many other side effects I didn't cover and couldn't because it's not a video made to cover every side effect of C/L. When we are prescribed pharmaceuticals there are benefits and side effects we should discuss with our doctors, pharmacist, and do our own research in decision making 🥰wmy.clevelandclinic.org/health/drugs/20349-carbidopa-levodopa-tablets
I had been diagnosed for five years when I finally went on L-dopa. The medicine was so helpful that I honestly felt like I got my life back. My tremors subsided along with a few other symptoms. I have now been on it for six months and I lead a very normal and active life. I wish I hadn’t been so fearful of it.
Thanks for this very important video!
Thank you for sharing your story! Not sure if you’ve seen any of my other videos but I was given a prescription to help confirm the diagnosis it’s called the Levodopa test..,,and just like you I totally felt like I got my life back and there was no way I was going to stop taking it…so I feel lucky for how it worked out! Happy to hear you’re doing good now! 🤗
Thank you so much! Diagnosed 4 weeks ago at 34. I needed this! I've watched all your videos and what your doing has really helped me accept my diagnosis!
Hi Scott!! At our age it's really hard to hear you've got Parkinson's...I was like nooooo way, it's got to be something else but, it wasn't. Check out YOPD Tuesdays with the PMD Alliance, which is an awesome YOPD support group with some really cool people. Thank you for watching and your comment!!
@@ParkinsonsWigglesProjectwell said! Feel much better now keeping a positive mindset is helping! Thank you so much, will check them out with a coffee tonight!
Hi Jennifer. Thanks for doing all the research for us and for presenting a balanced discussion about the ins and outs L-Dopa. This video is a great resource for everyone😀😀😀😀
Hi David and Thank you!! It means a lot to hear you say "a balanced discussion" because this is such an important topic and I don't want to say the wrong thing while highlighting this important issue!
I like your positive attitude, Jennifer! You are a real inspiration! I am hoping for the best.
Thank you so much!! It makes a big difference for me to find the silver linings 🤗
Love this video and I am so glad to have found you here on YT! This video will help so many people, including myself. I was diagnosed in 2021 and Levodopa has done a great job of quieting my symptoms. And until we find a cure rather than to just manage the PD, Levodopa is a life changer for me! The long term effects do concern me. But hearing you are 9 years in gives me encouragement. Thank you! Now excuse me, I need to share this video and go back and watch your previous episodes... ;)
Hi Mark and Thank you! I read in an interview with Michael J. Fox that he was told he'd be able to act for maybe 10 more years. He continued acting for 30! We just never know but what is 100% clear is that we cannot make the best decisions for ourselves with inaccurate information. I hope you enjoy my other videos and thank you for sharing your story : )
The best explanation I have heard thus far! You're so great! Love the quick change act too 😉
Thank you Missy!! 😘 It took me three different days of recording to find the right words or way to explain that I was happy with = many different takes to choose from 🙃 It’s such an important topic!!
Thank you for sharing your knowledge here🎉. Very valuable.
Thank you Roger!! 🥰
Yes! Yes! Yes! Thank you for saying this! I was afraid to take my medication for the first several years because of these myths. As always, another spot on video, Jennifer!
Thank you for sharing your experience with us! I was given the Levodopa test to help with the diagnosis....and my response to it couldn't have been better so I've taken from the start.
Another great video Jennifer! This is one of the best reasons for us to get the word out to newly diagnosed and you are doing that! Six years in and I am still fearful of dyskinesia but it doesn't stop me from taking my meds. It just makes me adjust them more carefully.
Next video...a few more wardrobe changes are in order. Maybe talk about how your day can change from hour to hour and dress accordingly. Think hats, evening wear, pajamas...the possibilities are as endless as our symptoms. Maybe call it Wiggles and Giggles. Oh boy, I think I am sleep deprived. Keep doing what you're doing! Awesome job my friend! Lauren
Thank you Lauren!! Have you seen my Footloose reel on Instagram? While it's not quite what your describing I changed my footwear and clothing frequently to do it, it was fun, and by the end was a sweaty mess, lol! And I agree with what you say about adjusting your meds more carefully....these decisions are so important for anyone taking prescription medications and for us over time there will be some fine tuning. Happy Thanksgiving!! :)
Great info Jennifer. I avoided Carbidopa/Levadopa for the first few years after my diagnosis. I was afraid of having dykskinesias. I appreciate your debunking the myths associated with the long term use. When I started CL therapy, it was a game changer. Like many of us on CL, I now have an appreciation of the dyskinesia’s because it means I’m on. 😊
Thank you Alinda!! : )
I live in a rural community with only one neurologist serving many counties of aging people. That neurologist has levodopa phobia. I had lived in a big city when I was diagnosed, so had the opportunity to see a neurologist focused on just Parkinson’s. When I moved here, I made sure to find my next neurologist at the big University about 4 hours drive from us. It’s really amazing how your doctor’s ability/desire to keep up with the pace of medical advances ends up shaping your life and your experience with the disease. I will send this to several people I know. Thank you for posting this. Diagnosed 11 years ago, taking Sinemet all this time)
Hi Linda & Thank You for your comment and sharing with us!! My mom was diagnosed earlier this year, she also lives in a rural community but she doesn't drive so she relies on medical transport from Medicare and only gets so many rides. Her neurologist has been very informative and kind to her but his first impulse was to do a bunch of tests before prescribing C/L. Her symptoms were getting worse, making her life extremely challenging, and an MRI was unlikely to help with her symptoms. It was clear to me she had Parkinson's and it was clear to him on her first visit. But it took a phone call from me a week after her first visit, to ask him if he would prescribe C/L for her in the meantime because all of the tests take so much time, and perhaps based on her response to C/L some tests he wanted to do might not be necessary. Thankfully he had no problem prescribing C/L and her symptoms were relieved, but if she didn't have a daughter with PD to make the suggestion and see what he thought, who knows how long she would have been in a testing rabbit hole.
Thanks for your efforts, it is reassuring we are not alone. Very helpful
Thank you David!! 🤗
Great information.The levodopa carbidopa is working for me.but I've only been on it for 6 months. It helps to hear what other people are going through. Your videos really are insightful. Thank you ❤😀
Thank you so much Charles!! It really does help to hear what other people with PD are going through and their stories. I have learned sooooo much from the Parkinson's community and am sooooo thankful!! 🥰
Bravo on an outstanding presentation!
I'm recently diagnosed with PD, and after a thorough exam from my neurologist, I requested and he prescribed the levodopa protocol. To say the difference between not being on the meds to being on them was like "Night and Day" is truly a profound understatement. For me, the levodopa quality of life improvement exceeded my wildest expectations.
So thank you for enlightening others to feel confident about requesting this 'Gold Standard' protocol from their doctor. Factual education and communication on the treatments available for PD can go a long way toward easing the symptoms and even the apprehension associated with this disease. Keep up your great presentations.
Thank you so much for your comment!! As you say the incredible improvement taking C/L in quality of life is a "profound understatement." I do know some people who had nausea issues in the beginning but were able to work them out. I am so thankful that my MDS, like your neurologist, listened to my concerns and prescribed C/L right from the start. It gave me my life back!! And the closest sense to normalcy that I could imagine having with YOPD....Thanks again!! :)
Im 4 months In and electing not to take levadopa. Symptoms at this point not to bad. Using natural supplements from my doctor for now. Worst symptom is nausea and fatigue. Levadopa help with that,?
@@marktaylor3047 Hi Mark! Carbidopa/ Levodopa is not used for nausea and fatigue, and both are a potential side effect of taking C/L. My symptoms were bad enough to get me to see a neurologist when I was diagnosed, and about six months after my diagnosis is when I started C/L therapy. Thankfully my doctors were informative and C/L was an option for me without phobias preventing it from being an option. Thank you for your comment!!
Wish I had found your channel.a year ago when I was diagnosed! Thank you! Thank you!
Thank you Jeannette! 🥰
Thanks Jennifer for a great topic. We all need to remember that all our journeys are different. Some start levocarb right away and others after a while. For me it took two years but only because Parkinson's was not affecting my day-to-day life, with most of my symptoms being non-motor levocarb wouldn't have helped. The most important thing is to find a MDS that you can trust and have open dialogue with. I'm lucky to have found one that says I'm the patient and I need to tell her what I want. She's there to help guide me. Also, for the newly diagnosed, please join a support group. This is where you get a lot of great information from people who are living with the disease.
Thank you Rick!! The problem isn't when one starts Levodopa, it is being able to make that decision with accurate information. If you choose to delay because of Levodopa Phobia, or if you doctor refuses to even discuss it as an option for the same reason, that is the problem. I pinned a comment from Katie J that truly illustrates how different our PD journeys can be, if you haven't read it please check it out. In another comment from Scott, diagnosed 4 weeks ago at 34 years. I told him about the awesome YOPD group we have with PMD Alliance. Both you and I are so fortunate to have Movement Disorder Specialist & Doctors that we can trust and have informed discussions with.
@@ParkinsonsWigglesProject I totally agree with you. That's why as a patient you need to be informed. If you can't trust your MDS then you need to find someone else because you're the one in control of your body. And that's why I think support groups are great because you get other people's opinions to help formulate yours.
@@ricksuvanto5009 Yes! So true! Our discussion itself is a perfect an example of how complicated and individual health care can be for those of us with PD. Patients absolutely need to be informed but as we know, a patients ability to, desire to be, definition of, or access to being informed varies. I think it ultimately should begin with the medical community and that they should recommend treatment based on accurate information not on myths. Plain and simple! Because for some with PD their doctor is the end all be all in terms of what it means to be informed and will trust them 100%, not feeling the need to check them or join a group. Even if they did, or wanted to they could be like my mom, without internet access, barely knows how to use her phone, who would not know how to find trustworthy sources online or an online support group if she did have internet access (but she has me) and not everyone is lucky to have a son like you or daughter like me to walk them through this ❤️ My moms coming to visit at the end of the month and I’m getting her an iPhone, I’ve tried so hard to show her how it easy it is to find things online and use a phone, but she resists 🙃 I’m hoping maybe the pretty glitter and ease of use of an iPhone may help her feel more comfortable but…it’s a long shot! Thank you sooo much Rick 🥰
Excellent topic! I hope every newly diagnosed person sees this right away.
Thank you! I hope the newly diagnosed and anyone with PD who is delaying comes across this video or finds a legitimate source that debunks the myth.
@Sharman Wood thank you. I’m in the states also. I wish you happiness as well.
@Sharman Wood Hello
@Sharman Wood All is well, thank you. I hope all is well with you!
Thank you for making this video, Jennifer, it is exactly what I needed to hear today. I was first diagnosed with Parkinson's in May of this year but I wasn't given any information on how or when to take the Carbidopa/levodopa medication, neither by my doctor's office or the pharmacy. I was frightened by the possiblity of developing dyskinesia so I told myself that I could control and even reverse the symptoms of Parkinson's through a healthy diet and plenty of exercise. In July I developed a diabetic ulcer on the bottom of my foot and have been unable to attend physical therapy or exercise while on my feet for the past 4 months. Any progress that I had made is completely gone and I am weaker than ever before. I am now under the care of a new neurologist and he has given me detailed instructions so that I can begin taking these meds. I didn't realize how much I had internalized the Levodopa myths until seeing your video today and I feel great reassurance because you have shared this information with us. Thank you again, and God bless you!
Thank you for your comment!! When you are just diagnosed it is so overwhelming and I am sorry to hear that your weren't given any information on "how to take C/L. How can that happen??? From my understanding diet and exercise are believed to slow the progression and even without PD are sooooooo important!! I am also a big believer in mental health. I did a video on stress and depression, and an update on an old PSA (this is your brain on drugs) the update should be this is brain when it's stressed! So along with diet, exercise, and mental health (the undeniable benefits of each all reinforce each other) I believe there is a way to live as best as we can with a very difficult disease. I am so happy to hear that you under the care of someone who will give you the crucial details. You can get back on track once you get your foot healed up, and I would think that there are exercises you can do while sitting or laying down so you don't irritate your foot but get to still do some exercise :) Thank you for your kind words and for sharing your story with us!!
@@ParkinsonsWigglesProject Hi Jennifer, may I ask you a question? I'm just starting to take Carbidopa/levodopa and a book I was reading mentioned that we must be careful about when and how much protein we eat. Is this something that you practice and how much is too much? I have been trying to lose weight and have been doing intermittent fasting and following a keto diet. My neurologist said that I should eat a snack when I take my meds, which will break my fast, and I probably eat more protein than others normally do, so I'm not sure how to add the meds without sabotaging myself! Do you have a snack with each dosage and if so, what works for you? Thank you for sharing your wisdom and insights with me!!
@@jeanninehill6009 diet is super important!! In the beginning, I'd say for the first six year once I started taking C/L I could eat whenever and whatever I wanted. It's different now. Proteins, sometimes carbohydrates interfere with med absorption. My tricks are when it won't kick in, if I eaten something I feel is blocking my meds, I go for bubbly water, ginger ale, or OJ. Bubbles and acid seem to be helpful to get it to kick it. I eat a little something always with my meds. Usually a Larabar, popcorn, something small to not get in the way, but not too little to where dyskensias will set in. This is my general practice and it's an art/dance. Sometimes I don't have dyskinesias at all, and sometimes I do even when I've done the same thing :) It might sound like a lot but it becomes a routine.
@@ParkinsonsWigglesProject Thank you for responding so quickly!! I was thinking of eating 2 saltine crackers when I take my meds, they are about 5 grams of carbs each and may not be enough to break a fast. I really appreciate your tip on adding acid/bubbles when the meds don't kick in! Have you kept track of the foods that block absorption? Do you think that would be helpful for me to do? I have SO many questions and I appreciate your very kind responses 💖🥰💖
@@jeanninehill6009 Saltines are great!! I haven't kept track of foods, and if you are good at tracking things, the more information you have the better. What I have found is that each of us have are similarities and differences...bubbles might work for some, but not others. It's an experiment and the one thing I will say is that I believe I have gotten to know my body as I never have....Thinking you will be the same! And I got my mom to do a video with me and she did great!!
Thanks.....God Bless!
Thank you!! 😊
Hi Jenn….Thank you!!! I’ve been waiting to tell my kids (18 & 19) that my levadopa will likely ‘stop working’ in 3 years. ( I was diagnosed in March 2022). This info was from the internet. It’s so hard to get correct info. So frustrating…Also - was wondering about your thoughts about DBS….would love to chat sometime anoint it? Thnx again for all you’re doing ❤️ Jackie
There is information you can trust, it takes time though to sift through it all, I like MJFF and Davis Finney for trustworthy resources. DBS is complicated because it works for great for some and not as well for others. My primary issue from PD is gait, and from what I understand and have discussed with others with PD, who have had DBS it is not helpful for gait dominant PD. DBS is good for those with tremors. As with everything with PD, it's complicated, but to make it less so when making decisions it comes down to having accurate information to make the best decisions we can. Even my answer is complicated, LOL! : )
Thank you for your very enlightening talk on levodopa phobia. I am in my seventh year since diagnosis and the first doctor I had consulted did not want to prescribe me carbidopa levodopa for the very reason you described! I have since gone to another physician.
Hi Michele! I am happy that you have another physician who was willing and open to talking about your options. This is the way it should be! Happy Happy Holidays to you! 🥰
Thank for your clip. Really benifical topic.
I been on L-dopa for 5 years plus and it is still working. Yep, the freezing can be scary. I recently stumbled across a CUE1 Parkinson's device.
Not sure if it is smoke and mirrors.
Hi Jessie! I stumbled upon the CUE 1 too :) I am on the waiting list....I sure hope it's not smoke and mirrors because it sounds pretty cool, and I would be totally down to try it. But this all depends on how much it costs!? Hopefully not too much :)
I was diagnosed with PD two years ago at 68 and was pushed to start taking carbidopa-levodopa (Sinemet). I did and it only made me feel worse -- foggy-headed, drowsy, dizzy, and on and on. Fortunately, I have found an excellent doctor who is willing to help tailor dosages and drug types to attempt to address my symptoms. We are not there yet but I appreciate his efforts.
I am saddened by the problematic choice of treatments available for PD. I understand that progress is being made but am disheartened by the fact that an almost 50-year-old drug, which has significant side effects (based on my experience), is the best we have. I am glad that it is effective for others. So far, for me, the side effects largely outweigh the benefit.
Thank you for sharing your story! Lucky for you that you have an excellent doctor willing to help find the right med's and dosages. I wish we had more options as well, but then when the new stuff comes out it can be ridiculously expensive. It can take time and I hope you find the magic mix! I believe that you will! :)
I was diagnosed in 2009 with PD, that’s 14 years ago…… I started taking carb/ lev standard 25/100 3 times a day. Then progressed to 4, 5, 6, 7 times a day. It gave me horrible dyskinesia after the 7th year, so my neurologist introduced me to carb/lev CR or controlled release and it gave me 5 hours of control at 1st and I was taking the dosage of 50/200 3 times a day, eventually in my off times i came down even harder when the meds started losing efficacy. To lose the dyskinesia I had to reduce the sinemet , so i started cutting back from over 1000 mg to 600 mg and i seem to have figured out whats best for me medicine wise…..started taking amantadine 3 times per day. I am currently scheduling DBS deep brain stimulation surgery for next summer, i have also been using an alternative therapy called bio photo modulation or red light therapy and its really changing some of the symptoms such as smell improvement, cognition, speech , check it out if you haven’t heard about it 😊 thanks❤😊🎉
Hi Dave!! Thank you so much for sharing your experience!! Dyskinesia is very real and finding the right mix of meds and habits I have found is essential. For example I am more dyskinetic if I drink alcohol, don't exercise, or take on an empty stomach. There are some days where I don't have it and some days I do. I take 1 25/100 every two hours and have been doing this for about 5-6 years. December of this year it will be 10 years since my diagnosis. I also take 2 amantadine per day, 1 rasagiline, and 1 coq10. I always find myself saying if only the disease and me could stay right here, and it progresses no more....but we know this isn't how it goes....the disease will progress...and it progresses differently in all of us. I have some friends who do red light therapy and swear by it! I should look into buying for myself. Thanks again for sharing your story and I hope that your DBS results in the outcome you hope for!!
@@ParkinsonsWigglesProject thanks for starting your channel and keep us updated, I will do the same, It’s nice to be able to talk with other people with Parkinson’s………👍❤️🙏😊💯‼️🎊 happy New Year..
thank you dear
Thank you Mike!
I was not a wear of this . I must read up about PD .
Yes! Exactly this! My sister has Type 1 diabetes and I just used the comparison of someone with diabetes needing to replace the insulin their body stopped making with someone with Parkinson’s needing to replace the dopamine their body stopped making earlier today. Also not a doctor, but as a patient I can’t agree more about taking the Levadopa.
Thank you Danielle!! I am glad to hear that I am not the only that has spoken of the diabetes/insulin comparison because while of course different it seems a perfect analogy. This doesn't apply to only Levodopa but we can't make the best decision for ourselves with bad/inaccurate information. Thank you!! :)
My husband got Parkinson's and dementia at the same time a couple when he was 83, he was having some psychosis. The Dr gave him C/L and I did not see much improvement but his psychosis got much worse and got mean and he was never mean before that I had to tell the Dr I could not have him take it. I feel bad I wish it would have worked he has advanced extremely fast.
I have Parky but I was slow to accept that.
On $hit doctoring:
I went to a Board Certified Neurologist in my town. He told us: I “definitely don’t have PD”.
I then went to neurologists at a Parkinson’s Center of Excellence. I had 2 90-minute appointments- then the unfortunate diagnosis.
Yes. There are unhelpful doctors out there. You have to be careful and you have to try to educate yourself.
Anybody can make a video. No credentials (or knowledge) are required, so be rational.
Despite my story of misdiagnosis, I am NOT cynical about modern medical care - but remember this:
Well-meaning doctors get overbooked and simply can’t give you as much attention as you deserve.
What is noteworthy in my journey is that my diagnosis came after TWO NINETY-MINUTE appointment at a Center of Excellence.
I used to be LIVID at the neurologist who missed my PD. Now I’m just a little pissed off.
Medication “banking” is a term I’ve heard too, in relation to L/C. And I think, initially I fell into trap of wanting to “save” those drugs until I “really” needed them. I was quite successful at living with PD and managing my symptoms and progression with mostly exercise and determination (and an agonist or 2). Finally though, I realised I was never good at banking or saving and my life was now and not in the future, so bring it on. 😁
Thank you! Medication “banking” is added to the list, and makes sense in this context. I am curious if there are any other diseases that these myths exist as well. In the US we have people who ration but that’s the financial nightmare of our for profit system, it’s different. Thank you for your comment 🤗
It’s an interesting question…Is medication phobia a thing with other degenerative neurological disorders….MS and the like???
@@alittlebitshaky it is! It made me think of Steve Jobs refusing treatment but that was for cancer…another research project 🙃
Jenn…can I also ask how soon after you started levadopa did the dyskinesias start? Just curious…
Hi Jackie! I remember starting to get dyskinesias around year 4-5. In the beginning for me, I was having issues with dystonia which were a big problem because I would be walking in the city somewhere and a terrible cramp would come to my foot and I couldn' t walk. Eventually I got those under control, for me they happen when my C/L is fading but I had yet not gotten my dosing dialed in. All of us are different in how we respond and if you look at the Michael J Fox Foundation website on their dyskinesia page it says "Not everyone will develop this complication, and the experience of dyskinesia varies." Hope this helps! :)
I'm still trying to process that this is happening to me.
I am so sorry to hear this! It seems so simple to me...because in order to make the best decisions for ourselves we need accurate information from our doctors. Hopefully you have a doctor who will talk with you honestly about ALL of your options and not just a select few.
Jennifer, before you started L-Dopa what were your symptoms like? Why would you rather wiggle :+) than not?
Thank you for your question! I had a bad intention tremor and dragged my left foot which made walking a challenge. Also my handwriting shrunk to barely legible at times. When these symptoms surfaced I had just opened my pub on my own and had no business partner. Not being able to walk and shaking when I went to pour a beer was a nightmare. I was given the Levodopa test to help confirm the diagnosis and C/L gave me all my abilities back. So for me, it was crystal clear. I would rather have dyskinesia occasionally, they aren't a constant, than not be able to move or carry a beverage to my customers.
Here’s a perspective (not necessarily mine):
Parkinson medications lessen symptoms.
I figure most prefer fewer symptoms to more symptoms.
Question: Are there any advantages to deliberately accepting some symptoms that more medicine would erase?
I think maybe.
Those symptoms show us what’s coming and help us ADAPT to what’s coming. We adapt through diet, exercise and other adaptations.
Accordingly, I err on the side of too little medicine.
Medicines lessen symptoms but they also “erase” the information those symptoms provide.
A closing comment: My hands get stiff - so I do hand exercises instead of taking more medicine.
Have I explained this approach usefully?
Part of me thinks this wise (but difficult). Another part of me thinks this is dumb.
Thank you
Hello and thank you!! I laughed at the end where you say part of you thinks what your thinking is wise and the other thinks it's dumb. What you say there is soooo human (I think 🥰)....and if what you believe works for you than it's not silly or dumb. We each have our own wisdom and what works for one might not work for another. But this doesn't mean that we don't share with each other what is working because you never know ♥
Keep it up
Thank you! 🤗
🙌🏼 ❤
😘
Hello Jennifer, please clarify what does it mean CL therapy?
Hi Aurora! Carbidopa/Levodopa 🥰
I have the opposite problem. The neurologist prescribed Cocarledopa, calling it the 'gold standard' treatment. He assured me I would feel a lot better. It did nothing. It's useless. Nine months in I had the follow up appointment. He clearly didn't believe that Cocarledopa wasn't working, or if it wasn't, it's because I'd not been taking it at the correct dose or times....so, he was blaming me for the failure of his crappy fake gold pills. I had done research and said I wanted to try a dopamine agonist instead. He refused, telling me that it would cause me to gamble all my money away through lack of impulse control!! Hence, another 5 months in I'm stuck with a drug that doesn't work and missing out on trying a dopamine agonist that might work.
So sorry to hear this!! I mention in my video that on the flip side there are also doctors who have fears about prescribing agonists. The one thing I have learned about this disease is that we all have so much in common and yet there are differences. My mom was diagnosed in March of 2022 and then my mother in law told my husband and I that she was diagnosed with PD in June of 2022. My mom responded to C/L right away, but my mother in law didn't respond to it all, it did nothing to relieve her symptoms. She was prescribed an agonist and it worked for her. Our doctors should be helping us find what available medicines work for us, it's that simple. And yes while I have heard many sad stories about agonists, there are other people don't have the problems with it that are feared, and it works for them just fine. Hang in there and if your doctor will not help you find the right therapy that works for you maybe you could find another who will!! Keep us posted and I wish you the very best!! Thank you for adding to this very important discussion!!
Yeah, doctor should have allowed trying dopamine agonists if levodopa wasn’t working. But agonists work by ”imitating” dopamine so it’s probably unusual for fake dopamine to work better than real dopamine.
@@bash547 Yes! Not sure if you read my response about my mother in law, but C/L didn't work for her but an agonist did. Anomalous or normal?! Thank you!
@@ParkinsonsWigglesProject Levodopa works best statistically to be called the gold standard treatment but there are always exceptions. I think most choices to use dopamine agonists is based on whether the patient is having worse side effects on levodopa.
@@bash547 Oh dear. In that case, it looks like I'm doomed to suffer a slow, miserable death. 😔
Oh man-I wish I had seen a video like this when I was diagnosed last year. I had one of those neurologists who refused to prescribe carbidopa/levodopa. He was putting me on a few different medications that ranged from not working at all, to making me absolutely sick. So sick, that I was barely functioning (to make matters worse, my stepmom died right around that same time, so that first month after my diagnosis was beyond awful). And while the medication he prescribed helped with the primary issues I was having (tremor/stiffness), the side effects simply made it not worth it. When I told my neurologist that the medication was causing issues, he just prescribed me something else in the same drug class. I ultimately lost all confidence in my neurologist and stopped taking medication altogether. I had to try to find a workaround for my symptoms, which by the way were impeding on my ability to do my job. I did do some research on my own and learned about the reluctance of some physicians to prescribe c/l-what you describe as levodopa phobia. I just wasn’t sure what to to believe. It was only after I joined a Parkinson’s support group that I learned about the things you’re sharing in this video. I stopped going to the neurologist I had, but had to wait almost a year to see the new neurologist. I was so afraid to take any medication after my initial experience, so I just went without any meds for several months- just suffering through for no reason. I basically developed a medication phobia from that experience! So finally about 5-6 months after my diagnosis, I went to see my primary care doc for a check up. It was the first time I had seen him since my diagnosis. He immediately offered to put me on carbidopa/levodopa and what do you know… life was good again.
Anyway, I just wanted to thank your for your videos. They have been very helpful to me and very encouraging. I’ve watched a lot of online content regarding Parkinson’s, and your videos have been the most impactful so far. So much good information!
Thank you sooo much for sharing your painful and unfortunate experience with us!! This is why it is heartbreaking that these myths persist because critical decisions are being made that can have a devastating impact on someone’s life!! I am so happy to hear that you found a doctor that listened and knew what to do!! From my perspective it’s not that complicated to start with C/L, for doctors to be informed, and situations like yours shouldn’t be happening for the reasons they are!! Thank you for you comment and kind words about my videos, truly my intention is to be helpful and to hear they are helping someone makes me so happy!! 💕 I go exclamation point crazy sometimes 🙃
This topic definitely warrants some extra exclamation points!!!
Hi, what’s your opinion on DBS? I was just diagnosed at 42. I’m worried about side effects of levodopa
Hi Anthony! Would you mind if I asked why you are more worried about the side effects of levodopa than the side effects of DBS?
@@ParkinsonsWigglesProjectHi! I’m years away from DBS. I start levodopa tomorrow. From what I read about DBS and what my MDS told me the success rate for DBS is over 90% in reducing rigidity and tremor. So if I can have a surgery where I take less medication and reduce the chance of dyskinesia, it’s a no brainer. What is your opinion on the issue?
My big PD issue is gait, and from what I have read DBS isn't as effective treating this issue. But DBS is evolving from an open loop system to a closed loop, so perhaps it will evolve to help with gait?! I can't even begin to contemplate brain surgery, it terrifies me to be honest, but if I got to a place with PD where surgery could substantially make things better for me and I was found to be a good candidate for it, I would consider it....but at the moment I am a long way from that place. This is one of the biggest decisions some of us will have to make with this disease. I would find others who've had the procedure and talk to as many of them as I could to learn from them and hear all the good and bad stories. Hope this helps and it is just one opinion of many 🥰@@Anthony99355
My major PD issue is gait as well. I also read if your not tremor dominant DBS does not work the same. My biggest problem is FOG which unfortunately DBS doesn’t help. I’ll just play it by ear.
Does carbodopa levidopa cause hair loss?
That would be a question for a pharmacist or your a doctor. I have never heard that C/L can cause hair loss. I know that getting, menopause, hormonal changes in men and women, and stress can cause hair loss/thinning but not sure how they differentiate what is causing what. Thank you 🥰
How have you been able to manage disconisias.
I discuss in some of my videos. When they happen I make the best of it, and bartend even when dyskinetic 🥰 The worst is when it’s hot and I get sweaty!
Why can't they keep their arms still. Is it too much levodopa?
It's complicated, and about disease progression. This is a great explanation about what is happening in the brain from the MJFF funded trial. Thank you for your comment!🥰
www.michaeljfox.org/grant/eltoprazine-treatment-levodopa-induced-dyskinesias
"Levodopa is the most commonly used medication by PD patients, but, as the disease progresses, it can be the cause of debilitating dyskinesias. The effects of levodopa, both positive and negative, are caused by its conversion to dopamine in the brain. In patients with moderately advanced disease the conversion to dopamine takes place mainly in the remaining dopamine neurons and their axon terminals in the striatum. As the disease progresses, and fewer and fewer dopamine terminals survive, another neuron system kicks in: the serotonin neurons. The serotonin neurons are capable of converting levodopa to dopamine, and store and release the newly synthesized dopamine as a “false transmitter,” but in a non-physiological manner. Studies in multiple pre-clinical models of the disease have shown that that the dyskinetic movements induced by repetitive, low doses of levodopa are triggered by such “dysregulated” dopamine release from the spared serotonin neurons."
@@ParkinsonsWigglesProject Thank you for this video, and follow up comments like this. It's so helpful to have the science behind it all in mind. I'm currently taking (2) 25/100 tabs 3x a day and my doc says I can go up to (3) 25/100 tabs 3x a day. My symptoms have recently gotten worse, but I feel worried to go up to my max dose so early in my treatment course. Will be two years on C/L this fall. Do you have any thoughts on this? What happens when we are at max dose and symptoms are still progressing? I guess this is where the other meds (can't remember their names) and implants and such come in? Are you at max dose? Do you wake up to take meds in the night?
If you truly want to help people, you should advise them to do deep research into the connection between Parkinson's Disease and parasites. That's where you'll find the truth.
PARKINSON'S disease is hard!
It's CRAZY hard! Wish it wasn't the case!
Skin cancer is a side effect. I got squamous cell carcinoma
I’m fair skinned, freckled and Irish, got to protect our skin from the sun 🌞
HEAR! HEAR!V
Hello! It is definitely the gold standard absolutely! When I was diagnosed at 40 in 2018, the first prescription was for levodopa (sinimet) and it worked! Arm was swinging, printing was back to being bubbly. I would never ever try anything else, no herbs nothing like that. In my opinion it’s a cash grab. Sinimet all day baby!! Hello to everyone and hope you have a wonderful night ❤❤❤❤from 🇨🇦🫶🏽
Helloooo!!! & Thank you for sharing your story my Canadian friend : ) I hope you have a wonderful night too!! 🥰🥰🥰