I'm not a newbie to PD, buy this is my first day (and first post) on this site..
I've was diagnosed w/PD about 15yrs ago, but, gratefully, it progressed very slowly... until about 3 yrs ago when I went downhill at an alarming rate. I had DBS surgery in 2009 and would be happy to share my experience(s),
I live in the metro Washington, DC area.
Welcome aboard the greatest Pd site,
we ar eall very frendly
Al
I would like to hear your experiences. Dennis
Hello and welcome to our awesome community. I was diagnosed in Oct 2011. This site is brilliant! 
we enjoy each others stories, jokes, poetry, anecdotes and general chit chat....so enjoy our company
I live in Sheffield, Yorkshire, England
Andy
Hi Thumbpick, welcome aboard. As yet I do not need DBS but would appreciate hearing about your experience pre, during and post op and why the decision was made to give you DBS and by that I mean what were the symptoms and how bad they were.
Hope you are good now,
Drew
Welcome to our great community, Thumpick. I'm from the South and live in Tennessee. I look forward to hearing more from you.
Again, nice to meet you!
Cheri
I've been dx for a decade, Last year I went through DBS since the meds were no longer consistent. I was a crap shoot everyday as to whether they would work or not. After a years worth of surgeries removing the system with post op infections and waiting for everything to clear up I am happy to inform you all that I would do it all again. After many programming "tweaks" It is finally helping stabilize my symptoms. I still have to deal with many things but I know how it feels without it!
I had DBS in September 2011 and would be most interested to share experiences with you. Tony
welcome stranger . I would like to hear about your DBS.
I have only been on here about a month myself . I have had some good feed back. Could you tel me how many volts your on also how much l-dopa you take
yours EXPORT.
I received my dx at age 50 after 7-8 years of unexplainable problems that turned out to be all related to Parkinsons. The doctors determined that I had probably had the beginnings of PD since age 40. About 2 years after I started medication I needed DBS due to complicartions from the medication. The difference in pre-DBS abd post-DBS are incredible!!!!! I was able to continue working fulltime for 8-9 years. I would love to share my experience with any of you considering the pros and cons of DBS. I live in Charleston, SC
I too have DBS. Dx 4 years ago (I keep saying 6 but my wife corrected me last night). I was somewhat stable for the first 2 years but in year 3 the meds stopped working consistently. by last year it would take so much l-dopa to turn me on I was totally paranoid. Had one probe removed due to infection just 4 weeks ago. Now waiting to clear the infection and get re-implant. I had a very positive response to DBS -- dramatic. I just wait to get the second probe back. Made big impact on motor and non-motor symptoms. BTW, I have a bilateral sub-thalamic implant .... my main issues were the meds not staying on. Tremor isn't such a big deal for me.
I am fairly new to this sight, too. It is wonderful! This Hoosier says WELCOME!
Ps. I am relatively new to the site also. I have been visiting daily and find it very therapeutic. I live in Colubmus, OH so not far from the DC area if you want a chat via phone we could find a way to make that happen also.
Cheers...Dylan
Thanks for the many responses and encouraging words. My primary problem was tremors... so severe that I could no longer hold a glass or cup of coffee w/o sloshing it all over the place.
Nor could I eat, at least not properly. I could not control the utensils. Even tried weighted utensils w/o success. If I tried to eat a "hand" food -- a sandwich ot pizza for example -- it would flap so hard that whatever was on the pizza or in the sandwich would wind up all over me, the table, or the floor. My lowest and perhaps most humiliating point was going to dinner with a friend and shaking so much that she had to feed me!! So, I stopped going to restaurants and my "food plan" at home pretty much came down to pretzels and cookies.... real healthy, no? No.
One think that was not affected was driving, As long as the car was in motion, I was virtually w/o tremors. When I stopped for a red light or whatever, the tremors resumed, albeit less than at home or when the car was moving.
Even though I could drive, the tremors were so embarrassing to me that I pretty much became a recluse, rarely going out except when I absolutely had to, like Drs. appts or grocery store (pretzels and cookies were getting low!).
I also had a few other symptoms... difficulty swallowing and occasional freezing when walking, or rather, starting to walk. I guess I needn't really say it, but I was also severely depressed. I wasn't suicidal, but I really didn't care whether I lived or died. And the meds were doing nothing. I tried Artane and is made me sick and gave me hallucinations.
So, I got evaluated for DBS (BTW, what's the Dx I see in people's writings?). I had bi-lateral DBS surgery in 9/10 and emerged virtually tremor free!!! Also, my though it's not supposed to help the other symptoms, my swallowing has been almost 100% cured, and I don't freeze when walking at all. AND, although I am a self-diagnosed pain wimp it was virtually painless! I was very, very fortunate to have a brilliant surgeon who is apparently world renowned for DBS... he not only does it, he travels elsewhere in the world (i.e., outside the Washington, DC area) teaching it and mentors others locally.
I have or admit, though, that being awake ( or, really, semi-awake) during the procedure was king of weird... but not upsetting. Just before they took me into the OR, the Dr. came by and asked if I had any questions. I said, "Yeah... I'm lying here wondering what made me think that elective brain surgery was a good idea?" Besides, I thought, "What if they open my skull and find nothing inside?
But it was a good idea. I got my life back. Not w/o some problems, but still a good idea. Primarily, it left me w/some slurred speech and almost indecipherable handwriting (have great difficulty even reading my own writing). But, I've had several years of speech therapy, the latest (and most effective) being the LSVT method, and it's been very helpful. Most days I'm pretty intelligible, others not so much. John Denver did a song years ago that applies: "Some Day Are Diamonds, Somme Days Are Stones". The tremors on my right side (which was always the worst) have come back a little, but zero on the left. And, I'm due for another "adjustment" of the controller/battery pack soon. Meds seems to have little effect on anything. Although I have some tremors, I can eat and drink like an (almost) normal person. I also used to have pretty good skills on the computer keyboard, but now I type a work and often there will be 5 or 10 characters repeated which I did not type (at least not Internationally)... a string of S's of A's, or O's, etc.
So, that's pretty much my PD/DBS saga. Would I do it again? ABSOLUTELY!! If you have questions, please let me know.
Oh, BTW, being a newbie here, I don't know if this has already been discussed, but if you haven't already seen it, the movie "Love and Other Drugs" is about a 26 yr old woman who has PD. I highly recommend it -- unless you're offended by nudity or profanity.
I hope I haven't violated some site "rule" by writing so much. If so, pls let me know and I'll control myself in the future.
Oh, somebody asked me, "Could you tel me how many volts your on also how much l-dopa you take?
I don't know my voltage, but will post it after my next visit to the "adjustment bureau".
Meds:
Clonazepam (generic for Klonopin) - 0.5 mg, 3 tablets 1-3x/daily
Carbidopa/Levidopa ER 50/200 (generic Sinement) - 1 tablet, 1-3x daily
In reality, my meds seem to have little to no effect. As I said in my DBS rant, I tried Artane and is made me sick and gave me hallucinations.
In my DBS "saga" I typed: "I also used to have pretty good skills on the computer keyboard, but now I type a work and often there will be 5 or 10 characters repeated which I did not type (at least not Internationally)... a string of S's of A's, or O's, etc."
What I MEANT to type was "...type a WORD and often there will be 5 or 10 characters repeated which I did not type (at least not INTENTIONALLY)......"
Dx is abbreviation for Diagnosed. Good blurt on your DBS very helpful I also found positive impact from The surgery in areas where the neurologist said it wouldn't impact. The neuro surgeon / neuro modulation team told me that the studies can't keep up with the actual practices results on non motor and non targeted benefits from DBS. I guess it is because of improved targeting when Placing electrodes. I too found little impact from meds when bilateral stimulation. Can't wait have that bak in Apr.
Look up the tag "deep brain stimulation" on this forum there is a 2011 post you Might find interesting. Cheers Dylan
Sorry for additional post this is the title of the other post I mentioned in case you hadn't seen it:
"Has anyone had the Deep Brain Stimulation (DBS) op? I have just had the op and am keen to share experiences. I have had PD for 17 years.
Asked by compucure 20 Aug 201116 answersReport"
Welcome. Thanks for sharing.
thumbpick why the welsh dragon whats the connection?
DBS SURVEYS
Newbie here...
Intrduction of Newbie
Is DBS good idea while PD still moderate?
