NOTE: PLEASE SKIP THE FOLLOWING IF IT HAS ALREADY BEEN POSTED. THE POSTMASTER
GENERAL (A COMPUTER?) HAS BEEN SENDING MESSAGES BACK AND DECLARING THAT THE
LIST'S MAILBOX IS FULL.
BUT . . . AT THE SAME TIME MESSAGES SEEM TO GET DELIVERED.
(BRAIN COLLINS HAD THIS TROUBLE OVER THE WEEKEND, AND HIS MESSAGE WAS POSTED
IN THE DIGEST AT THE SAME TIME IT WAS RETURNED.)
*********************
Dear Friends:
Three weeks ago when I "retired," I told you I planned to use my new free
time to write a book about my experiences with PD.
Here's the rough draft of a short chapter I completed this morning (5:00 a.m
CST) that I wanted to share with all of you on the List.
I thought you might enjoy reading it.
Thanks. Stay well.
Stan Houston (53/5+)
Cat Spring TX 78933
[log in to unmask]
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CHAPTER ?
"In the dark of night"
Monday, February 3
Three a.m. I'm in my study, sleep a distant
memory, trying to unscramble my brain. A bluish glow from the
computer monitor --- the light bulb of the 1990s --- illuminates
my keyboard, allowing me an occasional glance down to make
certain those stiff Parkinsonian fingers hit the proper keys.
Between "CAPS LOCK" and "T," my fingers suddenly relax. Like
melting butter, they spread across letter and function keys,
picking up speed. Within seconds, they're zipping from key to key
as if nothing had ever changed.
The time-release Sinemet pill kicked in. Like all Parkies,
I've learned this means I must watch the clock. My dexterity,
agility and, to some degree, my creativity are only allowed to
come out and play on a limited schedule. I live in a series of
two- and three-hour "life bites," much like a character in a
television series. If I fail to solve a problem or complete a
task in the allotted time, too bad. Tune in again next time,
folks.
Why does sleep avoid me? Why has it jilted me, treated me
like an unfaithful lover it can never forgive? It still flirts
with me, relaxing my body momentarily, floating the sleep-fog
through my brain, caressing my eyelids until blurred visions
becomes images drifting in the dark.
But often, as I rush to push myself over the edge, sleep
jerks me back, ordering my legs to start their Parkinson's Dance.
After that, I usually end up in my study, offering up my words to
the computer God.
Tonight, a message from a fellow night owl and traveller on
the Internet's Parkinson Network comes back to me. She wrote:
It (an exchange of messages between several Parkies)
originated from the depths of a sleepless night,
creating comfort and solace and a bond between persons
who otherwise were alone with their thoughts and fears
in the dark of night.
That's it, I realize. This is why sleep refuses to sleep
with me. In the dark of night, it smells my fear.
But what do I fear? What does my dopamine-deprived brain
believe lurks out there waiting for me?
In less than thirty-six hours, I will consult a new doctor
--- a PD specialist --- in an attempt to bring my symptoms back
under control. Am I afraid of what he might say? That he might
take one look at me, throw his hands in the air and declare,
"Sorry, you'll have to do the best you can."
Or do I fear the big "S" word: surgery. We're talking brain
surgery here, folks. Parkinson's originates in the brain, so all
roads to drastic alterations of a Parkie's condition lead
straight to the boss organ. Doctors drilling holes in your skull
and sliding long probes into your gray matter while trying to
carry on a six-hour conversation with you.
Not exactly the stuff dreams are made of.
More plausible, I believe, is my growing conviction that
like most Parkies, I fear everything connected with this monster.
All the frightening possibilities it poses for both me and
Shirley.
The biggies? Loss of speech. Complete loss of motor skills.
And dementia.
Not a pretty picture, right?
How do I break through the barrier of fear to confront these
possibilities --- not certainties --- and move on. How do I help
my wife do the same so she can continue the journey with me?
At five a.m. on Monday, February 3, 1997, I have no answers.
But I intend to find them.
********************************************
