July 16, 2016
 |
| Charles F. Bryan Jr. |
By
my count, this column marks my 100th for the Richmond Times-Dispatch. I have
published only one essay on Parkinson’s disease, a chronic, degenerative
neurological illness that has governed my life for more than 12 years. Why have
I devoted so little attention to the disease in my pieces?
In
all honesty, I welcome any escape from the grip of Demon Parkinson’s, and I find
that writing is one of the best ways for me to do that. Unfortunately, its grip
is growing tighter on me with each passing year. Despite my best efforts and
those of a first-rate medical team, the disease is gradually robbing me of a
once-vibrant and fulfilling life.
I
was diagnosed with PD in 2004 at age 58, which put me in the unenviable
category of “early onset.” After the initial shock of my diagnosis, I learned
that my service in the Army during the Vietnam War qualified me to be treated
at the Parkinson’s disease center at McGuire VA Medical Center in Richmond, one
of only seven such centers in the entire veterans hospital system nationwide.
The
results of the care I began to receive were almost immediate and dramatic.
Thanks to the expertise of a superb medical team at McGuire, I was prescribed
the medications and given the expert counseling I needed to help slow the
disease’s progression.
For
nearly 10 years, I kept the disease at bay. Friends seemed amazed at how many
of the manifestations of Parkinson’s were reduced by the care I was receiving.
And most people I met for the first time never guessed that I had the disease.
Gone
was the blank facial expression of most Parkinson’s sufferers. I started
swinging my arms again and taking full strides when I walked, rather than the
stutter steps so common with PD patients.
My
handwriting improved from a scrawl to a reasonably legible script. I felt fully
confident around people, and was completely comfortable in my public speaking.
My wife and I traveled extensively overseas, realizing that we needed to take
advantage of my relatively good health while we could.
With
my friends David Reynolds and Kit Lephart, who have PD, we formed a support
group that we named the Movers and Shakers. Together we became active in
helping raise $5 million to establish a comprehensive Parkinson’s disease
center at Virginia Commonwealth University, one that has begun treating
patients with movement disorders throughout central Virginia and beyond.
I
have spoken at many Parkinson’s disease seminars and participated in a number
of related fundraising events. People began to refer to me as the “Parkinson’s
Poster Boy of Richmond.”
***
It
was a honeymoon of relatively normal living that lasted about
10 years, longer than it does for most Parkinson’s patients. I knew, however,
that the honeymoon had a time limit on it. Parkinson’s is a cruel disease,
patiently taking its time to shut its victims down, playing with them like a
cat slowly but deliberately torturing a young rabbit it has caught.
Little
by little, it began to age me and sap me of my ability to do things that once
came naturally. I began to occasionally freeze and felt unable to walk through
doorways, terrified that I would fall.
I
would go into the grocery store at a full normal stride, yet halfway through
shopping, Parkinson’s would suddenly take control of me. I would begin
shuffling my feet, gripping the cart in fear that I would fall. When I got to
check out, I struggled to retrieve my wallet to pay for my purchases. I couldn’t
help but notice people staring at me, making me want to flee the store in
embarrassment.
I am
still able to drive a car without difficulty, but recently my children won’t
let me drive my grandchildren to McDonald’s or the movies, fearful that they
are at risk with me behind the wheel. It makes me sad, but I can’t blame them.
While
most people think of Parkinson’s as an illness that affects people physically,
it can have profound mental and psychological consequences. Depression is one
weapon in its arsenal. Fortunately that weapon has failed with me. But another
one bothers me no end — the loss of executive function.
Executive
function is a skill that most of us have that allows us to get things done such
as arrange your schedule for the day, organize your personal finances, remember
where things are, multi-task, or analyze a complex problem and find a solution.
At times, it drives my wife to her wit’s end.
I
know that part of it is the aging process, but hardly a day goes by that I
can’t find my keys or a bill I had intended to pay. I get frustrated trying to
find a memo I had received from someone, only to realize that I had stuck it in
the wrong file. I find myself putting off decisions until the last moment,
something I never used to do.
***
People
ask me what it feels like to have Parkinson’s. Is there pain and
discomfort? Not really, but it is more of the latter. The best description I
have heard is that it’s like driving with your parking brake on. Every motion
seems to slow to half speed, whether it’s buttoning a shirt, tying your shoes,
getting in and out of a car, or typing.
It
is the last that has really bothered me. I get great joy out of writing, which
I have done initially on typewriters and then on computer keyboards. Although I
have never been a speedster with my typing, up until a few years ago I could
pound out words at a fairly fast clip. Although I have no problem finding the
words, committing them to my computer screen comes more slowly now.
What
can I do? I am getting ready to take a big step to try to loosen the grip of
Demon Parkinson’s. Until a year or so ago, I was able to control the disease by
taking increasing amounts of the wonder drugs that curtail the disease’s
symptoms and actually slow its progression.
Unfortunately
I have reached the point of maxing out on these drugs. I am a veritable walking
medicine cabinet, taking near 20 pills a day. Their effectiveness and duration
little by little is lessening.
As a
result, I will soon take another step in this journey — deep brain stimulation
surgery (DBS). In an operation that could take up to six hours, the surgeon
will insert two thin, insulated wires through small openings in my skull and
implant them in a targeted part of my brain.
These
wires will be passed under the skin on my head, neck, and shoulder, connecting
to a neurostimulator that will be implanted under the skin near my collarbone.
Once turned on, the device will send out regular electrical impulses that will
block the electrical signals that cause my PD symptoms.
Assuming
it works, I can reduce the amount of my medications, and I will experience a
reduction of my PD symptoms. Are there risks? Yes, anytime one undergoes brain
surgery, there is the risk of infection, stroke, excessive bleeding in the
skull, or complications associated with anesthesia.
But
I am willing to assume those risks. If this procedure works, I can anticipate a
better life for years to come. Frankly I am tired of being tossed around and
tortured like a young rabbit.
I
look forward to giving you a post-surgery report — a good one I hope.
(END)
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