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-   -   GPi bilateral DBS concerns... (https://www.neurotalk.org/new-member-introductions/183944-gpi-bilateral-dbs-concerns.html)

JGreentree 02-13-2013 04:07 PM

GPi bilateral DBS concerns...
 
HI I'M Jeffrey from VA;
I'll be as brief as I can (these days!): Diagnosed w/PD. Dec'06@age 54 (my Mother had PD, but not until her early 70's) Started out with a very slight gait/posture issue-left side only. No agonist drug ever worked for me (except Azilect; from which I could discern minimal benefits, but at least this drug had v/few side effects) First Sinemet experience in 08- CR (time-release) didn't work after mid-day). In 2010 began working with one of the top Neurologists in the area--Dr. James Bennett (Chair of Neuro @ VCU/MCV)& began taking Sinemet 100/25 regularly (& as stated above tried all agonists) Dyskinesias became a real issue in late 2010. Went thru the DBS candidate-procedure in 2011(dyskinesias had become severe) Quit my 35 year electronics career 2 weeks before my surgeries in Aug 2011(Dr. Kathryn Holloway, THE top surgeon in Richmond area) I was initially ecstatic (lets say from Sept '11 to June '12)
Dyskinesias GONE, still independent (driving myself wherever I pleased) In late June, began having difficulty walking. Support group: says EXERCISE; joined the Y and began a rigorous routine. THIS bought me until mid September 2012... Had a serious meltdown while driving home from the gym.
Immediately handed my wife my car keys&license... Now a good day is being able to walk consistently; I ve been to three different programmers (as far away as George Washington Univ in DC), with no real success+ my speech is unintelligible. Dexterity & HANDWRITING gone...
NPF keeps sending me fliers w/DBS success stories )like one woman ,who now 50 & having undergone DBS surgery is now a TAE KWAN DO BLACK BELT! Am I jealous--damn straight!: YEAH I KNOW that there are no guarantees in medecine (IS THAT WHY THEY CALL IT MEDICAL PRACTICE!?)but where is the decade of enhanced quality of life Medtronics likes to talk about?

Darlene 02-14-2013 01:44 AM

Great to meet you!!
 

Jeffrey ,

:Wave-Hello: It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. You will find out we are supportive and relaxing place.

Click onto the following forum, there are some wonderful friends there to help you out.

http://neurotalk.psychcentral.com/forum20.html

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. :smileypray:


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