I was diagnosed with PD in late December 2011. Have been in the Cogane trial for 27 weeks (1 more week to go!). Not sure if I’ve been on placebo or one of the 3 strengths of Cogane. Tremor in my right hand is slightly worse and a little tremor pops up in my left hand if I get stressed over anything, which is new as of two weeks ago. Other than that I feel the same as I did 7 months ago. My only other symptom, stiffness in low back, remains the same.

There are many knowledgeable friends on this forum and I respect them all for their candid posts, excellent information and honesty.

I have an excellent motion disorder specialist at Georgia Health Sciences University, Augusta, GA. (previously Medical College of Georgia)

My question is, if you were in my place, knowing what you know now verses the knowledge you started out with years ago, how would you proceed with any PD meds?

Thanks,
Bruce

after 25 yrs with it, i am completely dependent on sinemet so i am glad that my neuro was of the belief that we should hold off on sinemet until you've tried everything else. i would have avoided me too drugs and drugs like stalevo. they just make me dyskinetic. sinemet alone, with amantadine still keep it under control. i have to take much med to sleep, but it's worth it. how was cogane administered? When are you supposed to feel the effects of cogane? it's a growth factor is it not? thanks for sharing.

i'm 58 and 11 years after diagnosis i do pretty well on 700-800mg of sinemet.
i might do better adding other meds but refuse to do so. no logical reason for that, it's just me. i couldn't tolerate agonists so sinemet is it, my only problem with it is short duration and protein in meals really negates it's affect so have to closely watch what/when i eat. i'd say 75% of normal but hard to know what that is since i've chosen to limit what i do, where i go, etc.

you have many more options than when i started, azilect, extended release agonists, agonist patch, a better normal/extended release combo sinemet was recently approved.
if you in an area where they have a lot of clinical trials you might want to factor that in as to what you are taking, sometimes they don't want you taking anything.

not sure if i could have done anything differently that would have changed how i am today. my point is not sure what you take really matters, take what works the best and you'll know when you need meds. i have tried numerous supplements, did chelation, iv glutathione, for me no tangible benefit.

i started taking meds 5 years after my diagnosis, i played a lot of soccer and was an exercise junkie, maybe that helped delay my need for drugs. once i stopped playing soccer - started falling, getting charlies horses, i progressed more rapidly but might have been a coincidence. i can still jog, ride a bike but can't sprint/move quickly, muscles a little too tight.

everyone is different so what worked for me might not for you. stay informed, stay as physically fit as possible and imho don't be scared of sinemet if agonists don't work.
if your're looking for a non-pharmaceutical advice, can't help your there.

Like Paula, I'm glad I delayed the start of sinemet. I was dx'd in 1999, and didn't start sinemet for 6 years.

BUT.... I was on a high dose of agonists for that time, and I would call that a lifestyle disaster. The only thing good about it is that it kept me off sinemet for 6 years.

I now take 2-3 25/100 sinemet and 2-3 amantadine everyday, plus 1-2 one mg requip to help me sleep. These are pretty low doses, but I choose to undermedicate in an effort to avoid side effects like dyskinesia. This has been successful so far. I also never miss my daily antidepressant (celexa).

I can undermedicate because I retired very early (age 48) on Social Security Disability - so I do not have the stress of a job, am divorced, and my kids are post-college - I have only myself to care for daily.

This is really uncharted waters - living for decades with a PD dx is new. I am now 54, and my doctor says, barring other disease or injury, I should be active for another couple of decades. There is no one recipe for success. I just try to keep my social/volunteer activity high (always challenging my brain), and my meds low. I am not as successful when it comes to physical activity - but that is on my to-do list.

I wish I had known then that I could be doing as well as I am now. My long term financial planning for the future has been dismal. I really think that where I am today physically is more to do with luck and day-to-day circumstances rather than visioning a path to the future. Now, however, after living with PD for 13 years and knowing that the disease should not progress any faster than it has (I've been told by doctors), I think the formula works for me. Keeping the stress low, knowing my limits, when to commit to projects and when to back off, and getting enough rest is key.

Except for the fact that I'm 16 years older, my story is a lot like soccertese. I was diagnosed over 11 years ago after years of depression, experiencing REM sleep behavior disorder, losing much of my sense of smell and having balance problems. What drove me to the neurologist's office was a subtle dragging of my left foot.

I have recently learned that, according to the top clinical researchers in PD, the first three of my symptoms are sufficient for accurately predicting that the classic movement symptoms, foot drag in my case, will soon follow. My PD is of the rigidity, bradykinetic, postural instability type.

I was diagnosed in 2001 as a result of my response to l-DOPA...foot drag gone! Depression lifted! I was actually on medical leave as a result of my depression, and my psychologist/counselor released me to return to teaching and research.

I've been taking sinemet (generic) and a little amantadine (began at 200mg, decreased to 100mg because of swelled ankles) every day since Dx.

After reading about some research on suppression of neuro-inflammation with extremely low doses of morphinans such as naloxone and dextromethorphan by the research group of Dr J-S Hong in 2004, I began taking, each night at bedtime, 3.5-4.0 mg of dextromethorphan.HBr obtained over the counter in cough syrup.

Although my total daily carbidopa/l-dopa ration is now about 1000 mg (a combination of regular and controlled release) I am still able to go about my regular activities such as lawn mowing, walking the dog, doing housework like laundry, cleaning, etc. Although I retired from regular teaching at the university in 2006 I still regularly attend departmental journal clubs and research seminars. I am convinced that the mental activity is equally important as the physical exercise for maintaining the quality of life that I enjoy. I also credit the small nightly doses of dextromethorphan for the slow pace of my symptom progression.

rc4less:

It has been 16 years.

I took Sinemet right from the start, just not a lot of it. When I added on Amantadine, the tremor went away. I have had a diagnosis since November 1996, about four months after I developed the tremor. I am not sure that Sinemet has a great effect. I suggested to the neuro that I might just stop Sinemet to see if the Amantadine is solely responsible for any improvement I have had, but he said that would not be a good idea. I have read all the stories about disastrous results from suddenly stopping a med, so I kept taking Sinemet but cut it down to 3/4 of a 25/100 insteaed of a whole one. I feel more tired, but I walk better. I take the Sinemet 2 or 3 times per day and Amantadine 100 once a day. If I take Amantadine twice a day, I do not sleep.

RLSmi:
Regarding taking the Dextromethorphan, isn't Amantadine a MAO inhibitor which should interact poorly with the DM?

Regarding agonists, I take Mirapex .5 2 times per day for restless leg.

I have had slow progression, but lately I have been discouraged by my own slowness and unnatural gait. I believe moving slowly all the time makes you lose interest in everything. Walking funny makes me self-conscious. A disinterested, strange walking person doesn't add to many social settings!

I am sure there is more to come unless, UNLESS there is a cure or some better drugs. I can't control that, so I just wait and hope.

Should you avoid Sinemet? I don't know.

My MDS said at my first appointment that he knew I wouldn't be happy without treatment, and I was too shocked to argue. But I would never have started that early - he gave me Permax, an early agonist, which did me more harm than PD ever has. I have no regrets about eventually starting Sinemet - I've been able to continue working, walking, hiking, socializing and basically having a life thanks to it.

I feel I'm very high maintenance, but I think it keeps my Sinemet use lower so it's worth it. I have to exercise (usually walking 3 - 5 miles) in the sunshine, go to bed at 10:00, eat lots of fruit and veg and the right protein, drink enough water, stretch, take some supplements and so on. Annoying, but hey - beats dyskinesia.

"RLSmi:
Regarding taking the Dextromethorphan, isn't Amantadine a MAO inhibitor which should interact poorly with the DM?"

Ann, Amantadine is not an MAO ihibitor. When i Googled it, its mechanism is not well understood, although some sources indicated a dopamine-releasing activity, also some norepinephrinen-releasing.

The dose of DXM that I take is so small that any effect on or by a MAOI is negligible

Robert

One of the things about PD research that bugs me is the shortage of information about progression rates. It's all very well to say that everyone is different, but that doesn't mean that we're all so different that we can't learn from the experiences of others.

A big question for PwP is whether to take all the medications as soon as they are offered or whether to under-medicate slightly in the hope that complications are put off until later. The paper below, albeit on a small sample size, found that dyskinesia is linked to cumulative levodopa equivalent dose. My interpretation, of this is that it is a small, but inconclusive step in favour of the under-medication route. Other research has come up with the opposite conclusion.

Scott, Macleod and Counsell write [1]:

"Conclusion In a truly-representative PD cohort, after 5 years of treatment, about 30% develop motor fluctuations and about 40% develop dyskinesias, most of which were mild. Younger age and higher exposure to dopaminergic therapy are associated with motor fluctuations and female sex, higher parkinsonian impairment at diagnosis and higher cumulative LED are associated with dyskinesia onset."

"The development of dyskinesias was independently associated with female sex (HR 2.02 [1.09–3.75], p=0.02), motor UPDRS score at diagnosis (HR 1.03 [1.00–1.06], p=0.04) and cumulative levodopa-equivalent dose (HR 1.37 [1.10–1.07], p=0.004)."

And another thing that bugs me: the rest of the paper is behind a pay wall.

Reference:

[1] J Neurol Neurosurg Psychiatry 2013;84:e2
"LEVODOPA–INDUCED MOTOR COMPLICATIONS IN AN INCIDENT PARKINSON'S DISEASE COHORT"
Nicholas W Scott, Angus D Macleod, Carl E Counsell
http://jnnp.bmj.com/content/84/11/e2.46.abstract

John

I am a very strong proponent of intense exercise and Yoga. I'm three years into the disease. With my exercise intensity and regular yoga, a significant number of my symptoms disappeared. I am not taking any meds at all. Still tremor in right hand and balance problems. I hope that the newly diagnosed will consider the exercise/yoga route rather than getting on meds right away. I tried Azelect at first, but could not tolerate it and quit after two months. I have a website describing my program: Sweating Out Parkinson's Disease.