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.
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These chapters are all from an unpublished manuscript I have, called “Deep Brain Diary.”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.