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Why and How I Volunteered..

Posted Jan 27 2010 12:00am

This blog was meant, first and foremost, to serve as a daily diary of sorts detailing my progression with Parkinson’s disease.  Saturday, January 30, makes 10 years since the day I was diagnosed.

Yet, drifting off to sleep last night, it dawned on me that this blog doesn’t tell the story of how I learned I had PD, why I volunteered take part in a small clinical trial for deep brain stimulation in early Parkinson’s, my description of the three surgeries involved, and aspects of my life in the days and months — and now, years — following.

I’ve fixed that here.

At the top of this page you see a link to “My PD Story.”  There are 8 chapters:

1.  Hubris, Karma or “Stuff Happens” — which is a prologue describing my first encounter with a person with Parkinson’s.

2.  From Diagnosis to DBS — which details my difficulties in getting a diagnosis and my decision to take part in the clinical trial.

3.  Volunteering for Brain Surgery — a few words about the screening process for the clinical trial.

4.  The First Surgery – the surgery to implant the bone markers that hold the frame they install for the second surgery.

5.  The Second Surgery — the actual placement of the electrodes into the subthalamic nucleus of the brain.

6.  The Third Surgery — the placement of the neurotransmitters into the chest, and the running of the wires up through the neck to the head.

7.  A Thing I Call “Droolfest” — a few words — and videos — of the 8-day hospital visits required before and after the surgery.

8.  The Story Thus Far — where we are today.

Much of what’s written in these chapters was written in the days immediately following the procedures.  So if you are a person considering DBS for yourself, a loved one, or anyone else you know, it’s a good first-person accounting of the surgery and what the experience is like.

These chapters are all from an unpublished manuscript I have, called “Deep Brain Diary.”  That was also the original name of this blog.  I’ve given up on finding a publisher, but here it is — partially — in it’s glory.

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