February 25, 2011

DRIVING WITH PARKINSON'S DISEASE

Yesterday the topic of driving was brought up at my DBS programming session with my MDS. She had seen the videos of me on this BLOG and noticed something that I failed to. My head didn't turn once, even at the stoplights. She then told me I should stop driving and I agreed.

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This was  perhaps the biggest shock I have had yet on my PD journey but also probably the best advice I could get.

It was also a bit ironic that the day before I backed up out of my driveway and didn't look in my rear-view mirror and ran into a huge white van.


February 16, 2011

20 QUESTIONS WITH THE UNIVERSITY OF NEW MEXICO NEUROLOGY STUDENTS










Today was the first of two days at the University of New Mexico as a subject for the new neurology students. It was a wonderful feeling to be out in public once again. I spent abourt 3 hours with 6 students and a certified neurologist.

Had so much fun especially after when showing them my neuro-stimulator in my chest!

I took my shirt off and tossed it to the attractive student who earlier while examining me asked "When is the last time you had sex?" and "Do you use protection?" I wanted to say "About a year with a partner, whats your name and number?" But I held it in and replied "About a year ago and no protection."










Location:Bellamah Ave NE,Albuquerque,United States

February 14, 2011

MY DBS WAS TURNED ON BEFORE I WENT TO SEE MY DOCTOR!


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".  

Activa Patient Programmer

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: 
  1. Could it have been something else in the hospital that turned it off?
  2. And the cramps are gone! But the heavy flow drool returned.
Reply from my MDS:
  • Really. Sorry. I wonder if it turned off when I exited the program. Glad you recovered. Hope you are doing well. SPR