I am glad to know that C/L exists as a treatment for PD but does not slow progression. It is routinely cited that dyskinesia can occur in up to 80% of PD patients after 5–10 years of L-DOPA treatment. A neuroprotective medication for PD is desperately needed and there are clinical trials under way for medications that may slow or halt progression - or even reverse symptoms.
Meanwhile, I have a question to the group: When do you think C/L should be started in PD treatment if at all?
I have been dxd with PD this year and have a resting tremor as my main symptom. The course of treatment I have chosen is Azilect, which may slow progression, and exercise, which has helped tremendously. Personally, I hope I can keep PD from developing further so that I won't need to start C/L. I am also actively researching new trials and hope to engage in one soon.
Don't let the fear of what may happen keep you from exploring treatments that can help you live a full life. C/L side effects can happen but are not as bad as pd. It is a trade off.
Without C/L i would be bed ridden.
When to start is when your symptoms are more than you can bear or when u want to improve on your day to day promblems.
You know p-oui, from my observation over 8 years this concern about dyskinesia is very prevalent amongst posters from the USA and far less of an issue for other countries. Yes we do get dyskensia, some of us, but I'm intrigued why it is viewed so differently depending on where you live (health systems, way it is discussed and reported on by experts?) .
Anyway It is far more of an issue for young onset PD than others i.e. 40s and younger, and I know many with onset in their 50s who get only mild tics and jerks. The fallacy that c/l stops working after so many years is another US promoted mystery. I have friends 20 years on with PD who are limited by PD but still have quality of life after many yrs on c/l meds.
PD is always progressive but the rate of progress varies. If you ask researchers and clinicians, those whose life is spent with people with PD or studying them, they would say that any who say they cured of pd did not have it in the first place, it is after all a difficult diagnosis and it is only time that proves it corrector incorrect. There will always be the desire to believe those that promise miracles if you follow their path, again largely a US phenomenon I think, but they have surprisingly few successes for the number of followers.
I 'm not saying C/l is perfect, far from it, and it is a significant step being on meds but it ain't all bad.
Bailey and Hikoi, thank you both for your thoughtful response. It is comforting to hear that the side effects can be well tolerated for many or at least they are better than the disease as it advances. Glad you are both doing well.
Hikoi, it is interesting that you see a difference in concern around this based on geography, I wonder why that is. I am doing well on Azilect and exercise, as I said, I just hope it lasts. For now, things are going so well that I am very excited about the benefit I am getting and very grateful I am able to exercise.
Keep up the good work p-oui ,you can still try Mirapexin next before C/L.
Have been on Azelect and Mirapexin for 4 1/2 years with exercise and still leading a good active life. when I saw New Neuro a month ago he told ne if I was his patient I would have been on the Sinemet 2 1/2 years ago ! As my quality of life is not being impaired told him I'm sticking with the Azelect and Mirapexine.
The idea that long term levodopa causes dyskinesia might be frequently cited, but it is WRONG. That idea was disproven by this study:brain.oxfordjournals.org/co... which showed that patients who had not had the benefit of levodopa treatment got dyskinesia just the same.
The reason for dyskinesia: As long as enough dopamine producing neurons are left alive, they can self-regulate and thereby adjust the overall amount of dopamine in the system. When they finally go the self-regulation is lost.
I hesitated starting C/L and my symptoms were getting worse even though I exercised six days a week and watched my diet. I started seeing a Movement Specialist and he started me on C/L three times a day, Mirapex, and Azilect. I have my life back. Quality of life is very important. We never know what's around the corner. Enjoy and be well!
Renowife so glad to hear you are doing well! Would you mind if I ask what your primary symptoms were? Hikoi recently shared a video on a post I started that is very good talking about categorizing different types of PD for more targeted treatment. I am on Azilect now andI still have a tremor but it is improved so it is hardly noticeable but I workout every day (vigorously) and it is working.
I just posted it this morning because I think it is great. The thread is titled "Are there different kinds of Parkinsons? A great video with Dr Michelle Hu from University of Oxford" You can get the link to the video there.
I am not one to take medication of any kind. I struggled with the idea of taking Parkinsons medications. I read so many things about them. My symptoms before taking medication were a general slowness, I couldn't stir things on the stove, I could not cut my own meat, I needed breaks during the day to get things done, tremor on my right side, my right leg felt strange like it was detached, had a difficult time buttoning my shirts. I was losing myself. I felt helpless at times. I hated it. I have always been independent. I feel so well now. I can take care of myself. I am the person I used to be. I am so glad I began taking the medication. Why not take advantage and enjoy life.
Renowife, I am so glad you found something that works for you. Your PD symptoms are very different from mine - so obvious that a one size does not fit all with PD. BTW, are you able to exercise now? A neurologist I reached out to recently signs her emails, "keep moving" and I loved that.
Each Parkinson patient has experienced different results taking CL, here is mine :
Diagnosed 5 years ago , even though resisting taking medication, I got convinced by Drs and family members that it would improve quality of life! I started then LD and it was increased to 8 a days as PD progressed but it never removed all disorders!
For my first time, I have participated in a Clinical Research “Neurodegeneration and Brain Function in Aging with Parkinson Disease” . On 8/18 an MRI was taken while OFF medications since 6 pm the day before - 1st time on No medication since diagnostic - in the morning I had many times Dystonia, freezing, needed my husband help for me to get ready...To our astonishment after noon I was able to get off the car by myself and then to walk on to the registration desk , perform many movement tests, take the bus, first golf cart ride , MRI etc ...with no problems , was fine and surprised from the positif result !!
Since then with my Neurologist help , I gradually reduced CL, I am now on 4 instead of 8 and feeling well, more energy, less apathy , no more freezing!!!!
EXERCISES is my theory : weekly 5 hrs regular walk + 2 hrs Yoga class + 3 hrs exercises for PD class + I have started to follow John’s advice I am on 3 x 10’ fast walk a week !!! Here is his link:
Wow, this is just outstanding and I appreciate you sharing. Neurodegeneration and Brain Function in Aging with Parkinson Disease - I would love to hear more about this clinical research. Is there a link you can share?
My heart went out to you thinking of the difficulty you went through going off your meds for the first time but this trial paid off! Also congrats on your workout program.
I was diagnosed earlier this year and my primary symptom is a tremor and it is responding well (I still have it) to Azilect and exercise. Would you mind sharing what your symptoms are or were?
I am doing a walk / run 6 or 7 days a week and about the same amount of yoga (2 hours ) that you do each week (and try to do some stretching every day - so helpful). I am not doing all you do - and to think of where you were before this research - you are an inspiration!
Please explain, "3 x 10’ fast walk"? Is that a walk of 30 feet?
From my experience and discussion with many:
If one truly has PD than the use of CD/LD is beneficial and eventually necessary. With out some CD/LD over a short time I become frozen and eventually almost paralyzed and no amount of exercise ,other meds , determination or anything else avoids it.
There are literally two schools of thought here, (Canada) with some Doctors being taught to delay CD/LD and keep the level of it prescribed as small as possible as long as possible . If you live in Canada with old school / new school, I understand why your question. I have found that the meds such as Ropinirole that are intended to facilitate this have very difficult side effects.
I try and keep the volume intake of all medications down to the smallest amount that gives me the optimum relief , not the amount that eliminates the pain etc.
I have never experienced that an excess of CD/LD resulted in dyskinesia. I have noticed that if my exercise is complicated ( moving arms , legs , and hands and body simultaneously in a mandatory predetermined pattern that after awhile I run out of Kickapoo-juice and my brain starts spraying it all over the body and then it starts.
There is no perfect treatment. strenuous exercise is mandatory and will reduce the amount of medication necessary but not to zero. All the following are necessary: Rest, diet , vitamins , exercise, medication, companionship, laughter, faith , understanding , determination and reduce or eliminate any one of these to zero and you will be in trouble, big trouble.
Agree with all you write, particularly about minimum of meds to give relief. Bouferre it is great to read you are doing well.. I think exercise is key. and also questioniing the amount of meds we take. I try keep under or at 800mg of l/c. a day. If I take more my control of symptoms actually gets worse. I think it's common for People to actually take more l/d to treat the symptoms actually caused by too much l/d. They can easily be mistaken for needing more meds when we actually need less. It becomes a vicious circle.
Nice to hear from the person who is I believe is the most informed commentator on the subject of PD that I have ever read. Hikoi has helped us understand PD both in this forum and outside the forum for many years.
My symptoms? too many to list I think but I'll try ! no tremors ! Left a does not swing, difficulties with movements especially on my left side, unintentional 20 lbs lost, anxiety, freezing especially in the morning, toes curl, stiff muscles, cramps, problems with coordination, constipation, slow movements, early wakening, fatigue, apathy, reduced facial expression, neck tightness, stooping and and ......
Keep exercising! And don't compare too much yourself to others as each one of us are different !
I lived in SB for 5 years and I miss Calif. Now we live in Tampa Bay area of FL. I love your advice not to compare to others. I am always curious about others symptoms and in an exchange with Hikoi about this she shared a link that I started a thread with yesterday, are there different types of Parkinsons. So I am always curious about symptoms because I think certain symptom categories respond better to different meds. I agree with everyone though, exercise makes a difference for all of us.
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