My neuro suggests that I should be on sinemet. A little background. I'm 82. Was diagnosed with PD at age 75. Have taken no PD meds to date. Symptoms include: loss of smell; tremor right arm and sometimes on left side; facial tremor; problem with swallowing at times.
These symptoms don't bother me. I hate to think about starting taking a series of pills and going thru another round of side effects
I have chronic heart failure. Bypass 17 years ago. I wear a defibrillator.Surgery for prostate cancer 15 years ago. Former marathon runner.
My heart will take me out
Any suggestions?
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attyj
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I was diagnosed this year in August but the symptoms started two years ago. For now I have only tremor in my right hand. Prior that I saw another 3 doctors which did not find other symptoms and told me I have ET. But the last doctor claims he noticed a lot of symptoms even I'm not aware of them and gave me two options: die or take Sinemet. He told me before Sinemet was invented all PwP were disabled in 3 years and dead in 5. I'm trying like you stay away as much as I can. You did not take meds for 7 years and still you are alive; that proves my dr, is full of s.... I'm 62. I'm exercising a lot and just started on coconut oil and turmeric. To be honest I do not believe in coconut oil and turmeric but exercising helps a lot.
No one here can give you advise what to do but at least they can tell you about their experiences without medication.
Why not giving Sinemet a try ? You can always decide to - progressively - quit if it does not suits you. The danger when you do not take L-Dopa is that the dopamine receptors on the surface of your nerve cells, will go dormant or die.
I would take some L-Dopa. BTW that's exactly what I do...
To be symptom free I would take the Sinemet. If you start with lowest possible dose and increase very slowly to the amount needed to control your symptoms, you shouldn't notice much in the way of side effect.
I take madapor and find I have long periods of time where I don't feel I have PD at all. Of course the symptoms come back when tired, stressed or just for no apparent reason. Early PD is manageable- the worst thing is dreading the future and trying to remain optimistic.
I asked this question of Dr. Okun on December 15. Below is his answer.
He is; Chair, Department of Neurology
Professor
Co-Director Movement Disorders Center
Departments of Neurology, Neurosurgery, Psychiatry and History
National Medical Director of the Parkinson’s Foundation
Dr. Okun
Ask the Doctor Moderators
Location University of Florida
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Posted December 16
Here is the abstract. In general I agree that higher doses and disease duration are most important and that delaying Sinemet (Madopar) is not a good idea. This is a great discussion. Also remember you can reduce dose and give more frequently and change combinations of medicines.....as treatment.
This is a great topic so I encourage discussion.
Brain. 2014 Oct; 137(10): 2731–2742.
Published online 2014 Jul 17. doi: 10.1093/brain/awu195
PMCID: PMC4163032
The modern pre-levodopa era of Parkinson’s disease: insights into motor complications from sub-Saharan Africa
See "'Don't delay, start today': delaying levodopa does not delay motor complications." in volume 137 on page 2628.
I have been trying to figure out the PD playbook for a while with varied success. Since joining this forum, I am on information overload (in a good way).
I do know that the C/L brought me back, very close to normal over the past several years. I sometimes wish I had started the C/L earlier, but I did not.
I do the Wahls protocol paleo plus that is a low carb high fat diet specially for people wih a chronic illness. Yes I cook myself it is also with very many vegetables
After about 3 days you have a complete reset of your immune system - so the likelyhood of cancer is vastly reduced. I admire your determination (though the first day is actually the most difficult).
attyj, I would agree with MB Anderson’s advice from the Doctor’s, professional movement disorder specialists viewpoint. I am in my 70’s, have had PD for about 10 years. My symptoms started like yours and I was not prescribed medicine, because my GP thought it was ET, for many years. He was wrong. Within a short time, I developed more serious symptoms of rigidity, freezing episodes where I fell and had a concussion and blunt force trauma etc. We had no specialists in the small town I lived in. My daughter, who is a nurse and lives in a big city, had enough of no diagnosis. My resting tremor in one hand was so bad, I couldn’t hardly use it, and my other hand wasn’t much better. My daughter moved me to the big city and we saw a specialist neurologist, who determined that I had already advanced to Stage 3-Parkinson’s. I was, also, having trouble swallowing, constipation, and orthostatic hypotension. The Neurologist put me on Sinemet right away, along with another medicine, and it made all the difference in my symptoms. My severe tremor is under control, and I can walk better, without so much stiffness and rigidity, etc. I have not experienced any bad side effects from taking Sinemet, which I’ve been on for a while now. On the contrary, if I had not been prescribed Sinemet, I would have been totally miserable by now. Loss of dopamine can happen at a pace that’s different for each person with PD, but with Sinemet, taking at least a low dosage could make it easier on you, so that you don’t have to experience what I have gone through, on top of your cardiac problems. This is just my experience, and, perhaps, something for you to think about. Wishing you the best in the coming New Year!
If your symptoms don't bother YOU....no need to medicate. Sinemet does NOT slow or stop the disease, no matter what people claim. It simply addresses existing symptoms. Sinemet is always there as an option in the future, if your symptoms do start to bother YOU.
Is that not possible zimmerman? I have one friend who stopped taking meds (at 7-8 yrs) - he slowly reduced. I would prefer the side effects than live as he does but the choice in the end is always our own.
I started taking sinemet 3 years ago at one a day. noww i have to take 12 or i crash real badly and feel like i'm crazy. at first it was like the movie Limitless, but now i hate sinemet. i have become almost vegan to deal with protein. i even have to take it during the night. the CBD really helps me feel more normal. i have used it for only a week now ad have a few drops about 4-5 times a day. i really want to know more about it.
Oh dear, i understand why you feel this way, from one tablet to 12 day in 3 yrs must seem to be quite an increase. Im wondering what strength of sinimet you take and when ?
I dont know much about cbd oil whether it comes in different strengths etc. The one person i ‘now of who takes it finds 2 drops twice a day has controlled her tremor and she feels very happy about that after about 15 yrs of pd.
Can you tell me what you means by crazy as you seem like me. I was persuaded to take over 4 year ago , I didn't want to but was made to feel like I was being difficult . Now I take loads and the more intake the mire I need I feel like I an going mad and the side effects are awful really painful stomach cramps and I am losing voice and it is the Sinemet not Parkinson's that is the cause as i start the day being able to talk and end the day mumbling
You must be thinking of starting the meds, are you? What do those close to you think? Sometimes we are not good at noticing how much we are affected. Why not give them a go for a month or two? Nothing to loose.
I doubt very very much that you would get dyskenesia, its much more prevalent in younger onset pd.
I would agree with your daughter and daughter-in-law, attyj. We all have your best interests in mind. Take care of yourself! My wife has the same type of heart problems you have, and I know I wouldn’t want her saddled with my progressive PD problems, that I had, before taking Sinemet, in addition to her heart failure.
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5 years of Sinemet and Dyskinesia
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Anyone suffered with Sinemet induced dystonia?
