First and foremost THANK YOU!
I do have a handheld Medtronics controller & I can switch between 4 stored programs and raise/lower voltages (within the limits written by the programmer)... The last programming session was 2 weeks ago; the programmer wrote what looks like a modified version of the "old" program I'm still using (same elements/phase, but longer duration bandwidth (up from 90 to 120 & bandwidth increased from 170 to 185, but lower voltages (down to
280 from 380)... Then they let me go & say SEE YA IN 2 Months! I've been to three different programmers in the past (NOT QUITE) a year , and the same "GROUNDHOG DAY" scenario plays out: EXTREME Bradykinesia especially on my left (weaker ) side. I can switch back & forth between preset programs & the same situation unfolds: 1) the old program still works "better"
2) taking more Sinemet makes me WORSE. I have to take one whole 100/25 tab in the morning, however I put it off for as long as my "sleep bonus" wears off, and this is the "best" part of my day. Every three hours or so I take 1/2 tab and generally do much better as they begin to wear off. ALL of the Neurologists I have worked with tell me to" TAKE MORE; you're UNDERMEDICATED!" If I followed their advice, I'd be in a nursing home by now. PLUS I have to watch what & when I eat... Each day walking becomes less of an involuntary function. A really BIG day for me is going to a doctor's appt and pushing a grocery cart while my wife takes me out shopping...I haven't been able to drive since September. I feel like a recurring dream wherein I am attempting to "walk" in an extreme blizzard where I cannot see either where I'm going or where I've been!
YOURS! Jeff

The surgical knife replaced with ultra-sound! open clinical trial in Virginia...

http://www.nbc29.com/story/19981092/...nson-treatment

Israeldevelopsthenextgenerationoperatingroom
<http://www.israpundit.com/archives/52588>

BUT are placing heavy weight on Va. residents...they are taking 30 patients, only 20 will get the procedure and the other 10 will get sham...I would not expect to get accepted if you do not live in this state

This will be very interesting to see how it turns out for PD, apparently it has been quite successful for ET, so far.

The 10 who receive the sham will later get the full ultrasound treatment. mjff interest here??

Hello My name is Jon, I suffer from cervical dystonia and essential tremor. My Neurologist and I had it under control till the beginning of this year when the cervical dystonia began acting up and my head start tremoring.

We have had it under control with BOTOX injection and medication for well over 4 years. It is not super bad but bad enough to ruin my days, I wanted to know anyones experience with the getting operation.

How long was the procedure?
How bad is the tremor afterwards? is it not existent?
Is there any congnitive side effects?
Will the electrode have to be replaced eventually?

Thanks

Jon

I'm told that there is a 'window' for administration of DBS, that is,
after a length of time DBS isn't as effective, whether that's 1 year
or 5 years.

Can someone clarify this? I didn't realize there was a cutoff point
for having DBS. I assumed that you could take dopamine for years.

Hello

This is my first post to your group.

I'm a caregiver for my friend, Bill, who has been suffering from Parkinson's Disease for many decades.

Although I'm not a medical professional, my non-caregiver background is one which requires great attention to detail and sophisticated analysis.

In an effort to be more helpful to my friend, I have taken it upon myself to educate myself about Parkinson's Disease, how it affects my friend, the medications he takes, and ultimately, how to make his life easier.

His family have heard about DBS, and they are quite 'gung-ho' about the procedure for him.

Perhaps you can understand his concerns about DBS, and that is one of the reasons why I'm reaching out to you, in an effort to educate myself and my friend, so that good decision-making is a possibility.

A good question to start is, is there anybody here who has undergone DBS? How was it? I'm talking about the surgery, any after-effects, any complications, and what about the results, too?

Curious minds want to know.

There I was, getting more dystonia and dyskinesia every day. I jumped around like a jack rabbit with his tail on fire. After DBS, they turned it on and immediately those two things stopped. But I got too excited about getting off the meds, and mesed up my walking sigh). It wasn't all the time - just when I was very tiredl We are working on that adjustment now.

There I was, about to turn 65, I had had PD for 20+ years, and my symptoms weren't improving at all. No new medications would help, so I went the only route that I could - dbs. It wasn't bad at all (just sounds like it). Yes, I am glad I had the srgery, and I will get tweaked to the correct calibration so that this occasional not being ablle to walk gets fixed.

It's the easiest way to freedom from long-term dopamine related symptoms.