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Late summer 2013
If you drew a blank front-and-back silhouette of my body on a piece of paper, then made a red mark for each injury or medical repair, the result would look like a road map of all the collisions and mishaps which accompany working and playing hard. I’m proud of that, in spite of the complications which all those hard knocks introduce as one ages.
Ten months ago, something new and strange intruded itself.
- I noticed that my hands and feet had developed tremors. It was mild at first, but over time, it interfered with handwriting, with typing, even with eating.
- Accompanying the tremors was occasional numbness, especially in my left arm, and stiffness in my left hand if it remained in one position for too long ~ as though the joints had become locked in position and had to be slowly freed up.
- Along with deterioration in hand manipulations, my coordination while walking became awkward. My gait was stiff and uncertain, cranelike ~ a far cry from the easy athleticism of my youth and middle years.
- Mild vertigo began to intrude itself when I stood or turned too quickly.
- As happens for us all, my memory began to erode ~ especially my memory for certain words, or for the names of people, books, movies. Any of these symptoms by itself might not be cause for concern. Taken together, they are.
I got a referral to see a neurologist. After a lengthy physical exam and set of questions, and a followup MRI, he said that I clearly am in the early stages of Parkinson’s disease.
Parkinson’s is "a degenerative disorder of the central nervous system. The motor symptoms of Parkinson’s disease result from the death of dopamine-generating cells in the substantia nigra, a region of the midbrain. The cause of this cell death is unknown. Early in the course of the disease, the most obvious symptoms are movement-related. These include shaking, rigidity, slowness of movement, and difficulty with walking and gait. Later, thinking and behavioral problems may arise, with dementia commonly occurring in the advanced stages of the disease, whereas depression is the most common psychiatric symptom. Other symptoms include sensory, sleep, and emotional problems." (definition from Wikipedia ~ check out the website for more info.)
Parkinson’s has a clear genetic component ~ one of my uncles had it. Other factors particular to my lifetime include wartime exposure to Agent Orange (a defoliant and herbicide widely used in Vietnam), and the near certainty of a concussion in each of my two motorcycle accidents (1985, 1990).
Even though there is currently no cure for Parkinson’s, an array of treatments exist to minimize the symptoms. The duration of their effectiveness is limited, however. Barring new research results or new medications, my outlook is for a maximum of 15-20 years of normal function, with my symptoms gradually returning during that time.
The background matrix
The background matrix
Parkinson’s is not, of course the first insult to my body. Others include ~
- PTSD from my year in the Vietnam War.
- Skin cancer (under control and continuous treatment).
- Chronic pain and limited mobility from a herniated lumbar disk.
- Bilateral carpal tunnel syndrome.
- Restless legs syndrome.
- High blood pressure.
- High cholesterol.
- Acid reflux disease.
- Chronic clinical depression.
- Assorted physical injuries ~
- Broken left clavicle
- Separated left shoulder joint
- Separated right bicep muscle
- Bilateral severe ankle sprains
- Tendonitis in right elbow, both ankles
- Separated left ring finger joint
- Separated right knee cartilage
I am still coming to terms with the Parkinson’s diagnosis, psychologically. Even though I did my own research and knew that was the likely cause of my symptoms, hearing it from the neurologist was hard. At first I was struck by how empty and hollow life had seemingly become. It’s not as devastating as being told that cancer gives you six months to live, but it’s in the ballpark.
But I’ve learned to counsel myself over the years, and I’m now taking things one day at a time. If we can discover a medication which removes the tremors and awkward walking, I’ll be content. There remains much that is fine and rewarding in my life ~ writing, reading, places I want to see, people I want to meet or reconnect with. Most of all, I am committed to doing everything humanly possible to save our garden planet from the ravages of pollution, climate change, dirty energy, and human overpopulation.
I grew up in a world which had much more wilderness and wildlife ~ today we erase wilderness and murder wildlife at a rate which leads to ecosystem loss and species extinctions daily. We are fouling our own life support system. What kind of world will we leave for our grandchildren, and their grandchildren?
I am determined that it will be a better world. I will die trying to make it so.
Which leads me to my own eventual end. I have no wish to exist as a vegetable, either in a nursing home or as a burden to family or friends. Before I become physically incapable or mentally scattered, I will choose to depart this life on my own terms, with dignity and acceptance.
In the meantime, life is rich with loving friends, fine music and art, the foods and cultures of a diverse world, and a wealth of memories. My cats are my caregivers and my solace. And, to paraphrase the Beatles, life goes on within me and without me.
During the time since that email was sent (and much love and support was received), I've endured the physical and emotional roller coaster of treatment. My neurologist prescribes a medication in various dosages, or combinations of medications. Nothing is completely effective. My unsteady gait has improved, and I walk daily, no matter the weather. But the tremors in the muscles of my left arm, from shoulder to fingertips, continue -- especially in the hand. Typing has become slow and clumsy, a frustration to one who once typed 85 wpm without errors. Whenever I grip something for more than a few seconds (a vacuum cleaner, a game controller, a dumbbell), it results in hours of intensified tremors, often compounded by sensations of skin crawling, or soreness, or fatigue. Lately I've noticed that tremors are now present in my left leg and foot as well.
Recently I discovered a local support group for Parkinson's patients. There are 20-30 people in the group, most of them in their 60s or older, but a few much younger who have family members with the disease, and want to know more about it. The group members are friendly and welcoming, and I'm learning more than I have through my neurologist alone. Among other things, I found out that there are twenty highly-rated centers around the country which specialize in Parkinson's treatment -- something most neurologists do not do. In the West, one is in Phoenix, AZ, and another is in Portland, OR. I love the desert, but Phoenix is way too crowded. I love the temperate rain forest, but Portland has such long, gray, wet winters. However, my son and his family live nearby, so that may become my destination for treatment. Besides, I've missed my son for far too long.
Networking seems to be key, augmented by my own research. That, and educating loved ones about what Parkinson's is, what to expect, and how to most effectively be supportive.
That's my story, and I'm sticking with it.