I'd sent this to Alan Bonander sometime in 1994. Mary Yost reviewed the
first draft of this and upon not hearing from me, called me to see if it
looked okay to print. I told her that since my original draft, I had been
"let go" by the band I was in and had retired on long-term disability from
my day-job. After hearing the details, she made some changes and sent it
back to me (she's an often overlooked "master of the written word"!). This
was published 12/94 in the Movers and Shakers, the YOP magazine here in
California.
 
Here 'ya go.............
 
-----------------------------------------------
 
Me and My Banjo
 
"I always said I wanted to be somebody ... I just wish I had been more
specific."
 
Lily Tomlin
 
I am David, 36 years old and diagnosed with PD for four years.
 
Music is the brightest part of my life. I have been playing music since I
was 13 years old, when I saw a kid about my age playing banjo on a local
television show in Memphis. I've been hooked ever since.
 
I have won banjo and guitar contests, played in a variety of bands across
the United States, and have taught (formally) at least fifty people how to
play the guitar or banjo. And then came Parkinson's.
 
The symptoms of PD (first noticed in 1985) started to affect me
significantly in 1988, a year after I moved to Santa Rosa. At first, they
were a nuisance, but I was still able to function well enough for the most
part. I joined a bluegrass band and found that my late-night banjo playing
had a new twist.
As the evening wore on, my dexterity and speed were greatly reduced. My
fellow band members were as confused as I was since "David was playing fast
just a while ago... what's up?" I also heard people remark that "you play
the banjo really well, but you need to smile more." Not knowing then about
the PD mask, I assured people that I was smiling inside (though it rarely
made it to the outside of my face.)
 
In 1988 I went to Kaiser Hospital to ask about these peculiar physical
traits. The doctor, who was not a neurologist, checked me out and informed
me "You're experiencing an isolated muscle tremor. They can come and go at
any age. I wouldn't worry about it." That was a relief. I'd dealt with a
degenerative bone disease _ perthes _ and walked on crutches from second to
fifth grade. I'd spent the last third of eighth grade in traction after
getting hit by a car and breaking both legs. An isolated muscle tremor I
could handle!
 
In 1990, after hiring on with the City of Santa Rosa, I went back to
Kaiser. The doctor who saw me said "I'm not a neurologist, but that looks
like Parkinson's... but you're awfully young to have Parkinson's!" (This
remark would be repeated many times from that point on.) After seeing one
of their two neurologists and going through the exam, MRI, etc., my journey
began.
 
My first neurologist (does anyone stay with their first one?) started me on
three 25/250 Sinemet a day. As you can imagine, the roller coaster ride
from tremor to incredible mobility began. The side effects from this drug
put me through many changes. At this point, I was hard pressed to separate
the emotions experienced dealing with knowing I had a chronic illness and
the side effects of Sinemet. I said then, and continue to say, "If this
disease would just stop progressing right where it stands now, I think I
can handle it." (I despise pity and tire of hearing people tell me about
something they read or saw on television pertaining to Parkinson's and the
fact that "they" are coming closer to a cure each day.)
 
The first PD support group I attended in Santa Rosa was disappointing and
depressing. I walked in with a hope that this group of people and I could
"connect", and greeted them with "What's shaking?". No one even smiled
(masks?). Their presentation that day was about "living wills" and "using
walkers". I wanted to talk about PD and its effect on dating and roller
skating. After the presentations, everyone got up to leave. I asked, "Don't
you talk about what it's like living with PD or the effects of different
medicines?" I needed to connect with a younger age group of people dealing
with PD.
 
A local neurologist gave a talk at this same PD support group about the
narrowing of the "window of opportunity" for Sinemet, the period when the
medicine is effective, signaling the need to supplement stronger medicines
with even more side effects. I was sitting in the front row with tears
running down my face. I told him "I'm 32 years old and already taking 750
mg a day. What can I expect in the near future?" To which he answered,
"What does modern medicine know? Check it all out: meditation, acupuncture,
yoga..." I realized in retrospect that he'd had to switch directions seeing
that he had a newly diagnosed "Sinemet junkie" with fear written across his
face, hanging on his every word.
 
I'd heard about Eldepryl and the promise of its slowing or even stopping
the progression of the disease. My first neurologist refused to prescribe
it for me. He felt the research was inconclusive and the side effects too
risky. So I switched to the other Kaiser neurologist, who also didn't
believe in the drug but felt I was entitled to try it. He lowered my
Sinemet dosage to 300 mg/day _ which was not enough. He told me, "David,
there's a number between 300 and 750 that will enable you to continue
working and to still play your music at night. Find out what that number is
and stick to it!"
 
I worked four years for the City of Santa Rosa in the Traffic Department. I
was primarily involved in traffic signal timing and data collection. It
became increasingly harder for me to be as productive as my fellow
employees. I worked with my union representative to write that "I am a
disabled employee and wish to be accommodated in my job under the new ADA
law." My employers did not accommodate me. They chose instead to document
any and all shortcomings, and set up a system of harassment that was cruel.
For instance, the typical length of an annual employee evaluation is one to
two pages. My last evaluation was ten! After I threatened to file suit for
discrimination and harassment, the City Manager and the head of Personnel
quickly proposed that I leave immediately on long-term disability. So, at
age 36, I retired on disability. This choice was definitely the best choice
since staying any longer would have produced stress that I was no longer
capable of handling. However, they missed an opportunity to learn how to
deal fairly and productively with someone with a degenerative neurological
disease.
 
Since my initial diagnosis, I stopped attending music festivals due to the
unpredictability of my Parkinson's and my desire to avoid displaying my new
disease to old friends who had played with me in the past. Gone was my
ability to play my music whenever I wanted (night or day) at any tempo
anyone might choose. The thought of playing well one minute, then feeling
my musical (physical) ability slip away the next, while people looked on
not understanding what Parkinson's is or how it is affected by the
medicine, was intimidating.
 
I still teach guitar and banjo lessons a bit. Though when I show my
students, "Hold your hand this way" and look down to see my trembling hand,
I quickly tell them, "But not that way!" I often describe the tremor in my
right hand and leg as "channeling the San Andreas Fault". One person
responded with, "You use humor to disguise your pain, don't you?" Yes, I
do. Because it works!
 
I joined another bluegrass band two years after I'd been correctly
diagnosed. I told them right off about my Parkinson's and how it affects
me. I explained the effects of my medicine and the need to "sit out" or let
someone else take my part when the medicine isn't working. My worst-case
scenario happened with this group at a small cafe in Sonoma. When I was
called upon to start a song, I couldn't hold my right hand still. My
fingers were sporadically brushing the strings. I turned away from the
microphone as if my instrument were out of tune, and another person started
the song. The band asked me to stop performing music with them due to the
unpredictability Parkinson's had on my playing and my inability to play
faster songs. This was only a few weeks after I had retired from my job.
 
I've found that music, which I love with all my heart, has now become a
physical and mental challenge for me. Though I have more time to play now,
that seems a "cruel trick of nature" since my dexterity is limited to those
times of "windows of picking opportunity" throughout the course of any day.
It's VERY SCARY at times, and I would gladly trade my free time for an
opportunity to win banjo contests again, or even to play music with others
without worrying if I can "keep up" or if the side effects are going to
throw my timing into a dither. I've had to let go of my dream of being a
famous musician, and set my goals in another direction that is physically
attainable for me.
 
Changes that I have initiated since September 4, 1994, my retirement date,
have included buying a new bed (top-of-the-line, pillow-soft), trading my
five-speed Toyota for a newer car with automatic transmission and cruise
control, and getting a headset (free) for my phone through Pacific Bell.
The improvement of my days from just these three things has made all the
difference in the world for me. I'm currently working with the Parkinson's
Action Network in Santa Rosa on some typesetting projects concerning ADA
and employees with Parkinson's disease, as well as helping disabled friends
to do things they can no longer do themselves. This type of service is very
fulfilling to me, and allows me to let go of much of the fear I've held on
to about the disease and its impact on my life.
 
I'm constantly amazed at peoples' varied reactions to my situation. A
coworker once told me, "David, if I were in your position, I'd probably be
mad." To which I replied, "Yeah, but then what?" Others have told me,
"David, I just want you to know that I think you're very brave going
through this". To which I replied, "What's the other choice?".
 
With an unknown quantity/quality of life ahead of me, I live each day to
the fullest. I want to burn brightly while I still have the chance.
 
David Boots
1532 Brookside Dr.
Santa Rosa, CA 95405