30 March 2014

THE DIAGNOSIS

Click on image to enlarge.

(What follows is a copy of an email I sent to select friends and family about six months ago.)

________________________________________


Late summer 2013

My life has been intellectually, emotionally, and physically active.  I discovered my own athleticism in adulthood ~ at play while hiking, bicycling, kayaking, weight training, and motorcycling; and at work as a surveyor, nature preserve caretaker, lifeguard, USFS wildlife tech, freezer ship crew, and driving transit buses, among others.

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.


The symptoms

  • 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.

The diagnosis

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.)


The genesis

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).


The prognosis


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


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.
  • Arthritis.
  • 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
The list goes on.  Some conditions respond to medication, others do not.


Summary
 

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.

29 March 2014

BADLUCK WAY


As promised in an earlier post, here is a summary of my experience with a book called Badluck Way - A Year on the Ragged Edge of the West, by Bryce Andrews.

The core theme is the evolving relationship between predators (in this case, wolves) and the cattle ranchers who often share the same territory.  It is a polarizing, highly-charged subject, one in which I am firmly allied with wolves.  But as the author shows, it's not all black and white.  Bryce Andrews is a gifted writer and an incisive thinker, in addition to being a hard-working cattleman.  His book is a gift, one that bridges the opposed perceptions of hard-core ranchers and hard-core wildlifers.  The writing flows as naturally as a mountain stream, awakening the reader's senses and lifting our collective eyes to a horizon we may not have known existed.

From the book jacket ~

"In this gripping memoir of a young man, a wolf, their parallel lives and ultimate collision, Bryce Andrews describes life on the remote, windswept Sun Ranch in southwest Montana.  The Sun's twenty thousand acres of rangeland occupy a still-wild corner of southwest Montana -- a high valley surrounded by mountain ranges and steep creeks with portentious names like Grizzly, Dead Man, and Bad Luck.  Just over the border from Yellowstone National Park, the Sun holds giant herds of cattle and elk amid many predators -- bears, mountain lions, and wolves.  In lyrical, haunting language, Andrews recounts marathon days and nights of building fences, riding, roping, and otherwise learning the hard business of caring for cattle, an initiation that changes him from an idealistic city kid into a skilled ranch hand.  But when wolves suddenly begin killing the ranch's cattle, Andrews has to shoulder a rifle, chase the pack, and do what he'd hoped he would never have to do.

"Badluck Way is about transformation and complications, about living with dirty hands every day.  It is about the hard choices that wake us at night and take a lifetime to reconcile.  Above all, Backluck Way celebrates the breathtaking beauty of wilderness and the satisfaction of hard work on some of the harshest, most beautiful land in the world.  Called 'an important meditation on what it means to share space and breathe the same air as truly wild animals', Badluck Way is the memorable story of the West's timeless landscape, a place at the center of the heart's geography, savage and gorgeous in equal measure."

I found it at the public library, and was so deeply impressed that I bought a copy for myself and one for my son's birthday.  By happy coincidence, I noticed a sign in Barnes & Noble alerting passersby to a book signing that weekend.  Eureka!  I showed up, two copies in hand, and was greeted by one of the most pleasant, eloquent, and at-ease people I've ever met.  We traded stories -- me, about my work on a Nature Conservancy preserve in southern Arizona, and doing post-hurricane habitat restoration for the US Forest Service in South Carolina, and Bryce, updating me on his own life's progress.  After the events in the book, he went on to manage two other ranches in southwest Montana, continuing the ethic of coexisting with wilderness/wildlife rather than seeing nature as an antagonist.  Currently he and a partner are starting their own ranch in the Bitterroot, with the intent of supplying free-range beef in bulk (a whole beef, a half, or a quarter) to individuals and/or retail outlets in Missoula. 

I enjoyed our conversation so much that an hour slipped by before I knew it.  Bryce wasn't hesitant in greeting others, but he was also generous with his time with me.  We exchanged business cards and email addresses, and I promised that I would continue to promote his book wherever I could.

And, as you can see, I'm following through.  Not from any sense of obligation, but because of the inherent worth of his writing -- skilled, natural, and devoted to one of the seminal controversies of our time.  I hope you will fell encouraged to read the book, and pass the word along.


28 March 2014

ON AGING


The following text (original in Spanish) and the photo
are by Guillermo Pena.
Translation to English by Sergio Cadena

My dear [child], the day you see I'm getting old, I ask you to please be patient, but most of all, try to understand what I'm going through.  If when we talk, I repeat the same thing a thousand times, don't interrupt to say, 'You said the same thing a minute ago' .... Just listen, please.  Try to remember the times when you were little and I would read the same story night after night until you would fall asleep.

When I don't want to take a bath, don't be mad and don't embarrass me.  Remember when I had to run after you making excuses and trying to get you to take a shower when you were just [a child] ?

When you see how ignorant I am when it comes to new technology, give me the time to learn and don't look at me that way .... remember, honey, I patiently taught you how to do many things like eating appropriately, getting dressed, combing your hair and dealing with life's issues every day .... the day you see I'm getting old, I ask you to please be patient, but most of all, try to understand what I'm going through.  

If I occasionally lose track of what we're talking about, give me the time to remember, and if I can't, don't be nervous, impatient or arrogant.  Just know in your heart that the most important thing for me is to be with you.

And when my old, tired legs don't let me move as quickly as before, give me your hand the same way that I offered mine when you first walked.  When those days come, don't feel sad .... just be with me, and understand me while I get to the end of my life with love.  I'll cherish and thank you for the gift of time and joy we shared.  With a big smile and the huge love I've always had for you, I just want to say, I love you .... my darling [child].

09 March 2014

I'M BACK

(click to enlarge)

The last time I posted an entry of any substance was late last summer -- nine months ago.  A deleterious health issue reared its ugly head, and I've been finding my path through the physical and emotional challenges that come with a diagnosis which places an unexpected limit on the years I have remaining.  I'll reveal more in a future entry.

For now, I want to say 'thank you' to those of my friends and family who have stuck by me, and to those readers who keep returning to this forum.  I've missed the daily act of choosing a topic, researching it, writing a summary or opinion, proofreading, rewriting, selecting illustrations, and finally publishing the result.  Rigor, creativity, satisfaction.

I already have a list of topics to introduce, not least of which is an important new book on one ranch hand's experience with cattle and wolves.  As happens in many controversial debates, people tend to fall into polarized absolutes in the stances they adopt.  I fall into this trap at times, though much of what I put out there is actually intended to provoke thought, discussion, or an expanded understanding.  The world is rarely a simple, black-or-white place.

I was fortunate to spend an hour talking with the book's author, earlier today.  He is eloquent, well-informed, and understands nuance and the longer view.  More to come.