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The neuro-stimulator in my chest with leads in my brain . |
On Friday the11th of February I had my 6th DBS programming session. As usual it went very well despite
some confusion with the front desk. The appointment ended and we drove home, ate lunch then I felt tired so I went to my room to attempt a nap.
Then I woke up unable to move or talk.Finally an hour later my room mate came by and saw me just laying there.
Although a scary experience it was a powerful eye opener. It must be close to what it feels to be buried alive. Abandon all hope if your neurotransmitter gets turned or left off on accident!
I still don't understand how I left the 4th floor of the VA Hospital, walked to my truck, came home and ate lunch. I felt great.
But when my legs started to not listen to the movement instructions my brains was sending via the dopamine receptors, I could hardly move my legs. So I did the old fall forward and catch he wall trick and eventually made it to my room. Something wasn't right.
I fell onto my bed and found I couldn't talk or move at all. I layed there for an hour thinkng "this sucks".
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Activa® Patient Programmer |
Finally after an hour Naomi came by and saw me. I was able to point at the neuro-stimulator battery in my chest like I have done a hundred times before when I though it was off. Always wrong.
The look on naomis face was classic "your right it's off"! She clicked the button on our DBS remote an walked away. Not one minute later I was up and walking with little to no problems.
The oddest thing happened when I was able to move and speak. I cried and cried.
Not tears of sadness but happy tears.
I want to thank my MDS for giving me new chance at life. The chance at a life out of a bed and not a prisoner of my body.
The ironic thing is a very special young onset friend of mine, Donna, asked me just that morning how it would feel if I it was tuned off for a few hours. Now we know!
NOTES:
- Could it have been something else in the hospital that turned it off?
- And the cramps are gone! But the heavy flow drool returned.
Reply from my MDS: