Is it just me?

A question posted to all out there in the PD world..

Because I've only ever been on one medication, Sinemet, I am ignorant of every other medication out there. I am being treated by a very sought out Dr. Who shall remain nameless, I had to wait over a year for an appointment and when he did see memhe spent well over 2 hours with me! He had me on the Sinemet for over a year before he approached me with DBS. Therefore I am not knowledgeable on the drugs out there or the drugs for PD that everyone else seems so knowledgeable about. I seem to be somewhat ignorant of all that I could be on, or am I lucky that I've gone this far on offer 1 1/2 years being drug free???????

24 Replies

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  • Stay drug free as long as possible.

    DBS? Ask doc why. Is it because of severe symptoms and ineffective meds?

    My neurologist recommends against DBS. Just his advice when I was dx. That was advice for future planning.

    "drugs out there"

    Compare treatments taken by people with Parkinson's Disease

    patientslikeme.com/conditio...

  • You've had DBS and are currently taking sinemet?

  • Good morning Chris0846

    How long have you had PD and are your symptoms controlled with Sinemet if so why the DBS.

    For me DBS would be the last thing i would do.

    Also please include your age.

    DO you do any exercise.

    This web site has a lot of info about meds.

    webmd.com/parkinsons-diseas...

  • Does the semimet actually work? it did nothing for me I have been drug free fr 6-7 years but i am atypical. have plateaued out over the last 2-3 years

  • I have always heard that if sinement doesn't help, it means you do not have PD.

  • Sinemet hasn't worked in the past for me either, I have the non tremor PD but maybe am going to try it again now at a lower dose to see if it can help with my bradykinesia.

    Reading around it seems that generally the PGID type of PD doesn't always respond to sinemet.

  • what symptoms do you have

  • I do not have tremor, but have freezing of gait and occasional falls along with other symptoms like micrographia and speech disorder. in fact the neuro recently changed my diagnosis too PSP but this this is atypical too. so basically the don't know, I did have a datscan about 2-3 years ago that showed bilateral dopamine depletion.

  • I really don't know why to tell you that I wish you well!

  • Hi Chris - they're all sought out. My neurologist was the president of the Association of British Neurologists and the first medication he recommended/prescribed for me was azilect (rasagiline). That was just over 2 years ago when I first went to see him. Search on this site for azilect to hear testimonies about it's effectiveness. Then last year I added co-beneldopa. I recently had a discussion with the Parkinson's nurse about it's effectiveness and she told me that the only difference b/n sinemet and co-beneldopa is the different 'carrier' used to get the dopamine into the brain. Some people respond better to one and some to the other. Because of the doubts in my mind I have reduced my co-beneldopa to nothing (stopped a few days ago). I am waiting for another appointment with the nurse before she can prescribe the sinemet.

  • I am on sinement, neupro patch, and amantadine. There are quite a few other meds. Different symptoms for different people.y

  • The last sentence of the post is puzzling me. Do you mean to say you have been drug free for over a year and a half after receiving DBS? The thing is you have not certainly indicated whether you had the DBS surgery or if it was merely discussed between you and your doctor. Please clarify.

  • Yes I had the surgery on Oct 8 2014 and have been off any meds since. Because I had only ever since my diagnosis been on low dose Sinemet, was realitively young, 56 and female and was still getting moderate effectiveness from the Sinemet the neurosurgeon and motion disorder specialist thought that I'd be an excellent candidate for the DBS and for the study group, which I did participate in for one year. A total of 25 people were chosen, me being I believe to be the only female. It was very interesting!!

  • I am eager to learn from your experience. Are you off meds because of no symptom of PD or are you not taking meds in compliance with the agreement for being a subject in your 25 member trial group? I ask because you were interested in meds other than Sinemet which suggests you still exhibit some troubling symptoms. It would help me and others facing a decision perhaps to undergo DBS to learn more about your personal experience.

  • I was off meds for one year only in compliance with doing the surgery, however, in the last few months I am experiencing some signs of progression of PD. For example I have pain in my Rt hand, particularly my middle finger, poor balance, and most recent is pain in my Rt leg making it very painful to walk! When my movement Dr turned my device he noticed that only my Rt side was shaking which is strange since prior to surgery only my left side was affected by PD, yet the neurosurgeon did both sides. The Dr said he will monitor me and quite possibly I would go back on Sinemet, or the surgeon would go back in and take a look as it could be possible that he could have been off a teeny tiny fraction of a micro millimeter!

  • Good gracious, you must have a good movement doctor. I hope that an adjustment effects improvement. I'll share some personal info with you, as it may be interesting. My neuro referred me to a colleague, a DBS specialist, in 2013. The colleague's office (Plotkin in Tyler, TX) never called to setup a consult. I was referred to be a subject in a trial such as you have experienced. At the next 4 month meeting with my neuro they asked how was my consult what have I decided...etc? I told them no one called and the Drs. face lost color. I recognized cold fury and just quickly said, it is probably for the best, as I am doing alright on Sinemet. That's the way I looked at it, if God wanted me to have DBS...etc. I hope your PD stops progressing and you will continue to update this community on your status.

  • I consider myself VERY lucky indeed as he is very much in demand across ONTARO and has quite a reputation, waiting list is over 1 1/2 years now. He is very thorough and finds my problem quite frustrating and me as well because I want only to feel better which is very hard to do inPD people like us!! I know that he will try his utmost to make that happen for me! Hopefully you to have a movement Dr as good as mine!!!!

  • The neuro who cares for me is like a friend I know I can trust. All the best.

  • I'm still not clear on why the DBS was prescribed, Chris 0846. I think you said "only moderate help from Sinemet". What symptoms were you hoping to control with this drug before you were recommended DBS? Thank you in advance for the help.

  • I have been diagnosed for 4 years and it took a while to get my meds right. I am clearly sensitive to Dopamine agonists but respond well to Azilect and Sinemet CR.

    I am exercising as much as possible which is recommended by my consultant. I have just acquired an exercise bike so I can't use the weather as an excuse not to go outside! Luckily my progression has been slow which might be luck but I like to think exercise plays a part. My care has been great and I try to keep up to date with all progress made by researchers.

  • What brand of exercise bike did you get? I think I should get one.

  • You must have me confused with someone else!

  • I was replying to PositivePen's reply. She said she had purchased an exercise bike.

    I am also on Sinemet like you are and like it because it removed my slight left hand tremor and tiny handwriting. For the time being I guess I have no other symptoms.

    I read Brain Storms recently which is I think the best book yet about PD. My husband thinks so too. It describes DBS in one of the chapters.

  • Hi Chris. At the risk of upsetting some of the people who read these blogs, I feel compelled to tell you that there is no medication currently on the market which has been proven to stop or even slow down the progression of Pd. So whatever medication you take, it is only trying to mask one or two of the symptoms.

    DBS is not guaranteed to permanently remove any of the symptoms either, and it is not risk free of causing other problems as well, so don't think it is a failsafe procedure.

    There is only one thing you can do that has been proven to slow down or even stop the progression of Pd and that is FAST WALKING. I will not elaborate on this but if you are interested you can go to my website - reverseparkinsons.net and read all about it.

    Good luck

    John Pepper

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