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TRANSLATE

Sunday, July 17, 2016

PARKINSON’S - Bryan: Loosening a demon’s grip

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.
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 Charles F. Bryan Jr. is president emeritus of the Virginia Historical Society and the author of “Imperfect Past: History in a New Light,” which is a compilation of many of his Times-Dispatch essays. Contact him at cbryan69@verizon.net.

http://www.richmond.com/opinion/their-opinion/charles-f-bryan-jr/article_dace5665-6c27-5ea9-bb17-bb235d06b5f1.html

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