I'm not in America where I believe the neurostimulators aren't implanted and later programmed for some time post surgery.
Charlie where are you? You know about these things!
I had the whole procedure, by that I mean electrodes implanted in the sub thalamic nucleus, usually the part of the brain where they're inserted in P.D. Plus leads and stimulators implanted in the sub clavicle area all in same day and my first programming session was the next day.
The agonist was stopped abruptly and completely with no problems on day 3 post op and I was on the highest dosage of permax 3 x daily.
I'm in no way endorsing trying this but I was in hospital so I assume any problems would've been observed.
I tapered off Sinemet myself as I knew that I wasn't in need of nearly as much of it anymore and as is policy I think in most hospitals for Parkinsonians I could self medicate. By week 3 or 4 I had neuros ok to stop it completely and as was the case with agonist drug caused me no problems.
Now several yrs down the track I'm on approx. 300-400mg Sinemet daily as opposed to pre surgery dose of 1,200mg.
The only thing I need it for now is to help address gait and balance problems which have resurfaced. I haven't had dystonia, akinesia or dyskinesia (which were a very difficult thing to deal with) since the surgery was done 7 1/2 yrs ago.

To answer the original question, in my personal journey over the last 5+ years traveling internationally to speak at symposiums and conferences, and meeting literally thousands of people with PD along the way, my personal opinion is this: I see way too many people, who in the chase and quest to regain Pre-PD normalcy, take way too much medication, become disabled not by the PD, but by the medication side effects, and then turn to DBS for the answer. I find the whole thing really disturbing.

Dealing with a chronic disease takes a long term plan, but too many of us are in a rush to "feel better now" and that's hurting us in the long run. I know DBS has indeed helped a tremendous amount of people. I'm not debating it's benefits. But like everything else in life, I see it being abused, and for some very wrong reasons, and that bothers me.

Todd do you know of any doctors with experience getting people OFF sinemet? I'm having a heck of a time finding a single one with ANY experience. I now find I could be doing organ damage if not getting the right blood tests if I go too fast.

Just to clarify I don't have PD after all. I was misdiagnosed but getting off is worse and apparently more dangerous than having PD (which isn't life(time) limiting). I was wondering with your amount of contact if you heard of anyone?

Thanks.

Todd, my personal experience with dystonia AND cramps are distinctly different. With all due respect I have a unique perspective of having what more than 12 doctors diagnosed as dystonia due to EOPD but I don't have PD. So while I may be a bit different I wanted to clarify that dystonia is not cramping. It sounds as if you are trying to relate what people are telling you with good intent but a little off the mark. Bear with me here because I have an important reason for bringing this to your attention. I think you are in a unique place to help some folks and ask your patience. You made some very good points about dosing protocol. I draw what I know mostly people I know with PD, what some doctors tell me, and my own sinemet caused Dystonia.


I smashed some of my old work into this video all made when I still thought I had PD so the password is oldpd
It is intended to differentiate between cramps and the complex condition of dystonia.

Now that I'm de-toxing off sinemet and having debilitating cramps I can tell you there is a huge difference. I'm not criticizing you so please don't take it that way. Just pointing out there is are so many components of dystonia that I don't believe most doctors understand including the emotional and activity sourced changes we can induce upon ourselves. I am 6 months into de-toxing off sinemet and still have plastic and lead pipe dystonia.

Dystonia is a pulsating war of mostly opposing/related/sympathetic muscle groups often with rhythmic movement (unlike cramping which is more muscle shortening/locking/non-rhythmic). There is often additional abnormal movement that may be a jittering wavelength of activity that bends bone and tears tissue. It causes "hunchback" and permanent torsion, which is much, more than cramps are able to do. It most often involves one or isolated muscle groups (which appear to be consistent for an individual) becoming more powerful and overwhelming an opposing group to the point that tissue and/or bone distortion or destruction occurs.

Muscle "cramps" (for me) are a distinctly different draw up of single muscle contracting/shortening usually confined to one side or a group of muscles (not a system of muscles). Dystonia is made worse by high dose sinemet OFF's and relieved by sinemet dosing. Cramps are caused by lack of sinemet over long periods (like de-toxing) of time. The biggest difference is I can "relax" or stretch out of cramps and get them to ease up. There is NOTHING that solves dystonia except sinemet or other medication to alter the amount of dopamine/l-dopa in my system.

A less than optimally trained doctor (or several in my case) may not recognize the difference. I was misdiagnosed with PD when I didn't have it and I am still experiencing dystonia due to a lack of sinemet (or my own dopamine as I detox) as a result of sinemet wear off's as sinemet lost its efficacy over 5 years. My hope is that I will regain the ability to make enough of my own to get rid of the sinemet completely.

The Cramps I am currently experiencing as a result of lowering sinemet dosage, which is NMS, and DAWS related are distinctly different. The doc that realized I don't have PD said, rightly so, that if my cramps were dystonia I wouldn't be able to "relax/stretch" them away. I would remain locked up without medication and progress to a frozen state of non-movement eventuallly. This happened when we tried far too little sinemet for 4 days and I realized I was totally unable to stand after 4 days. Dystonia is not affected, for me, by muscle relaxers like baclofen. The cramps I have are relieved by baclofen and pain medication. The Dystonia appears to come and go when I'm off meds as do other PD symptoms-until I progress to DAWS.

Dystonia also has a behavioral component to it most often (which turns it off or makes it immediately quit or get worse) that is usually very unique to each individual. For MJ Fox it disappears when he ice skates. This video seems tied to either the chair or the position thought minutely different for this man when seated. Ot makes me think there is much more to Dystonia than sinemet solves and that it is to often prescribed. http://www.youtube.com/watch?v=cwdmd...4E26CBD32B463F

I also think PD is too often dx'ed because of dystonia and sinemet completes the book. The End.

I made the video I supplied the link to above when I was going through a divorce and trying to convince the judge I was NOT faking symptoms. I'm having a bit of a hard time today with my hands so forgive the editing. I have included credits though they may be slightly incomplete-I will correct that as soon as I am able.

I can shake a can of coke/food whatever or start working with my service dog and get dystonia to "let go." It's right back again the moment I quit doing that specific motion.

I'm sure you heard of the cheerleader stricken with dystonia after a seasonal flu shot who can walk backward but not forward, can run but not walk, etc. http://www.youtube.com/watch?v=5ztiAN9k584 I include part of a Fox news broadcast about her in my video. It was not a fake though there was much discussion. It's so weird as to be unbelievable. She is not unique.

I do think you hit on the KEY issue wrt the overdosing by patients and doctors in an effort to retain some normalcy. This is the worst thing I’ve ever gone through getting off sinemet. It would take a monumental amount of motivation for anyone to go through this like not having PD. But I do believe that many people could lower their doses and or eliminate sinemet from their regimen now and save it for later when they really need it if they try other therapies.

I don’t believe doctors tell patients (none of mine did) about the possibility of spontaneous NMS or DAWS just taking the drug as directed. I think the thought of being able to function and get things done, maintain a career, postpone disability, guilt over being a burden, and many factors contribute to what is abuse of a drug that we still don’t understand HOW it works. Pills are easy, a lifestyle change is not. We are all under a burden to produce and rx drugs are all safe right??

It is addictive in that it produces withdrawal symptoms that are often fatal, it does provide a high (I’ve felt it after being off for bits of time), I’m fighting the addiction now, and I fully believe that if drugs like Reglan can induce PD that it’s possible that Sinemet may cause similar symptoms or mimic the disease itself and become a self fulfilling pharmacological prophecy. The medical community does NOT understand how the drug works and I think they also are not dosing or prescribing it correctly. Also based on the fact that I can’t find another soul like me what needs to get off or has been misdiagnosed when dystonia has so many causes. I can find no doctors with experience, I can find no clinics with expertise, and no mortality data ini the US from NMS/DAWS despite the abundance of publishing.

Maybe someone like you could start these questions being pondered by patients and doctors. Do we have it wrong as those that didn’t believe that fleas spread the plague or that bacteria and germs didn’t exist? I think we do. I think a lot of pwp's are pw/op's too like me. Dystoia now seems to = PD when the odds are it probably is not statistically.

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