On 17th April I'm having DBS. My neurosurgen, says an average result is to straight line my 'on periods' but he expects a significant result which by his definition is winding the movement clock back to when I first started taking levadopa. For me that was 10 years ago.
For those of you who have had DBS, has anyones clock been wound back? If so tell us all what it was like. CharlieMadge
I had DBS in 2010 and it took me from barely able to function (b/c my tremors were so horrendous) to nearly tremor free. It ain't perfect, bit it's an operation that gave me back my life. It used to take me up to an hour to dress (f*** buttons); I couldn't eat w/utensils b/c my shaking was so bad the food flew off the fork all over me, the table, the floor, etc. My low point was when I went to dinner w/a friend and I could not eat b/c I couldn't control my utensils. My friend had to cut my food and feed me. She was very kind and matter-pf-fact about it but I don't know of a time in my life when I was more embarrassed and humiliated.After that, I became a recluse... only left the house when absolutely necessary (dr. appt., grocery shopping, etc.). DBS gave me back my life.
I say it's not perfect b/c PD is progressive even after DBS so you have to go periodically for the neuro to adjust the DBS controller... fairly frequently in the beginning, but then once or twice a year (in my case). Yep, while you're endeavoring to control the PD, it's still there... doing push-ups! Would I do it again? In a heartbeat!
Best of luck to you.
What a fantastic reply. If you don't mind me asking how old are you and how long have you had PD, did your total medication reduce and has it stayed own or is it rising again.Charliemadge
Fantastic to read about your encouraging results with DBS I have my evaluation in March now not so apprehensive after your post all the best Sunnysky
What about the long term? I recently spoke to a gentleman whose father had DBS which gave him good relief for 5 years. How long can one expecct? Perhapss like a lot of things to do with PD it depends on the individual
I'm currently 67. Dx about 15 yrs ago and it progressed very slowly, showing only mild, occasional tremors. Descended into "PD hell" around 2008 0r 2009. Meds barely had any effect on me prior to DBS, but have some effect post-DBS. Oh, BTW, I had problems w/swallowing and occasional freezing when walking. The Neuro said DBS wouldn't help w/that, but freezing is gone completely and 95% of the time swallowing is normal.
You have given me renewed hope. Great to see such outstanding results. You probably don't know yourself.
DBS does not re wind the clock but it does help so much that you will think it did. I had DBS a year ago at age 69 1/2. (16 years after being diagnosed) What it did for my gait was incredible - downside is how it affected my speech but as much as I used to talk, there are probably a few people who are delighted that i dont chatter away as much as before - i am self conscious about talking too fast and not loud enough/ working with speech therapy to see how i can improve that. I take same meds as before - actually it is not a lot- but the volts are not set very high (2.3 volts) on stimulator either.
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