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With DBS, What Happens To You When You Turn The Devise Off??

A MyParkinsonsTeam Member asked a question đź’­
Tampa, FL

I never did that and was wondering what I will experience. Bean

May 18, 2021
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A MyParkinsonsTeam Member

I have had my DBS since 2008 and it's been a great experience I can turn it off or on and turn it up or down depending on how I feel when I turn it off I start shaking then I turn it on again and stop shaking. I would recommend getting the DBS and getting the rechargeable battery packs

May 18, 2021
A MyParkinsonsTeam Member

DBS, better known as Deep Brain Stimulation is when a patient has surgery on the brain. Electrodes are implanted into the brain, on one or both sides depending on the neurologist.These electrode stimulate the neurotransmitters enabling dopamine to be created, and movement motions are made possible. This entire process is done by an implant of a pacemaker, similar to that of a heart pacemaker, which is placed under the skin in the neck/ shoulder cavity.This pacemaker is then connected by thin electrical wires placed under the skin up the side of the neck and between the skull and the skin and connected to the electrodes within the brain.A external remote control will enable a trained person to adjust the functionality of the pacemaker to suit the patients needs.The controls of the remote control will determine the patients related abilities and should improve mobility / motion, if switched off it will not function at all and could result in motion / movements been affected.

May 18, 2021
A MyParkinsonsTeam Member

I turn mine off from time to time. Mainly, it gets turned off when I am working with Guitar amplifiers or PA speakers, which have large magnets in them. The DBS protects itself (and my brain) by sensing the magnet and shutting itself off. So here's the weird part: your symptoms don't immediately come back. There is this well known phenomena where the DBS effect lasts for a while after. So if I didn't know that my DBS was turned off, I become a detective. "Boy, do I feel lousy. Wow, that's weird,a tremor in my left hand. I better check out my DBS remote controller -- Yep!" and there will usually be a magnet symbol on my DBS screen. Then I power it on, and for a few seconds, there is Euphoria! I don't know if it would quite be worth it for "recreational use" or not, but I get this awesome tingling sensation when I turn my DBS on or change programs. (I just posted a larger DBS review in my home section)

May 18, 2021 (edited)
A MyParkinsonsTeam Member

You will not necessarily experienced the same as me if you turn your system off.
Xx

June 5, 2021
A MyParkinsonsTeam Member

Hi Bean, every time I go to the doc to have my settings changed he turns off the device. My body starts tremoring ----- both arms and legs. It's not horrific
but it is a shock to see how much your tremor has advanced with no meds and no DBS! Hope you are doing well.

May 18, 2021

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