Living with an ailment that puts one's survival instincts into play

Opinion: The never-ending tests of Parkinson's disease

Saturday November 14, 2015

Living with an ailment that puts one's survival instincts into play
Ken Thurman

Times Union - I fell again last week. That's been happening a lot lately.

In January, I took a leave of absence from my job to battle Parkinson's disease, a debilitating neurological malfunction in a part of the brain that basically controls one's balance and ability to walk.

At the time, I didn't know what to expect or even if I'd ever be well enough to return to work as an editor at the Times Union. Unfortunately, retirement became my best option and, on Aug. 28, I called it a career after more than 30 years as a journalist.

For me, each day brings a mixture of personal victories and defeats that may seem like no big deal to most people. Some days, for example, I get excited if I can just stand up long enough to brush my teeth or pour myself a bowl of cereal for breakfast.

Then there are days when I feel "normal" and, for an hour or so, I forget that I'm sick. But, as the cocktail of prescribed drugs — totaling nearly 30 pills a day — begins to wear off, the reality of PD's presence in my life returns.

Medically, PD is considered a movement disorder because signals from the brain to other parts of the body (especially the arms and legs) are interrupted as millions of brain cells die off prematurely. Scientists aren't sure why this occurs, but PD usually strikes people in their 50s or 60s. I was in my mid-50s when I was diagnosed. That was four years ago when I noticed a subtle twitch in my right hand when I used the computer at work.

At the time, all I knew about PD was that it made its victims shake uncontrollably, and that boxing legend Muhammad Ali and actor Michael J. Fox were among those who have it. I've since learned that PD is quite complex and how it manifests varies from patient to patient. The type I have often leaves me struggling just to lift a leg or foot a couple of inches, like the rusted Tin Man in the "Wizard of Oz." There are also times when my feet feel as if they are encased in concrete. This limits my mobility, and turning around in a narrow room or space can be a real challenge.

My biggest fear is falling and breaking an arm or a leg — or worse.

Parkinson's disease makes no apologies for what it steals from you, and it forces you to check your dignity at the door. I've lost track of the number of times my neighbor has had to help me get dressed. The Schenectady Fire Department has been to my home more than once, including an assistance call I made in July when I broke two toes by kicking a wall during an apparent nightmare related to my cocktail of medications. Each time I stumble or fall I learn a lesson about a progressive disorder that will continue to test me as it advances.

The classroom is inside my head where there are mood swings, periods of psychological paralysis, tremors and vertigo. I also get frustrated if I cannot perform simple tasks such as being able to walk across the room to answer the phone before it stops ringing.

I often feel like I am living in a basement apartment in a world where "life" begins on the first floor.

To slow the progression of the disease, I use a regimen of exercise, meditation and music. My day usually begins about 9 a.m. with AC/DC blasting away on the stereo and me wildly jumping up and down. This is my self-prescribed cup of black coffee, which I count on to release endorphins needed to get moving.

Time also takes on a whole new dimension and things seem to move a lot slower because the disease often impacts your fingers and hands. I'm still trying to get used to the reality that it can take me up to three hours to get dressed. Just putting on my socks took almost 20 minutes the other day; pants, shirt and shoes easily took another hour — and that doesn't include showering and grooming.

If necessity is the mother of invention, I can honestly say that my survival instincts have been pressed into duty. For example, when I'm home alone and unable to walk, I carefully map out my trek through my home before setting out on a pillow, which I use to scoot across hardwood floors. To avoid getting stuck in a corner, I study angles and objects such as door frames and radiators that can serve as leverage points with the handle of my cane — nicknamed "Excalibur."

At first, I used my cane to help me keep my balance while I walked or stood in line at a grocery store or bank. Today, I use it to turn on the stereo (and adjust the volume or radio station). I can also turn on the television and lights. It took a lot of patience and practice, but I can even use it to take a phone off the hook or table and dial 911. Next up is the kitchen sink water faucets. I'm currently working on incorporating use of the stove, microwave and even the telephone answering machine.

But don't feel sorry for me. Instead, feel empathy for the more than 1 million people in the United States who grapple to live with this mysterious and progressive disease. By sharing my personal experiences, I hope to raise awareness of PD, which affects some 55,000 more people each year.

The writer is a Schenectady resident and recently retired Times Union editor.

http://www.timesunion.com/tuplus-opinion/article/The-never-ending-tests-of-Parkinson-s-disease-6632549.php

https://nwpf.org/stay-informed/news/2015/11/the-never-ending-tests-of-parkinsons-disease/