Triumph Talk
April 11, 2012
Thanks to Cheryl and all my friends at PAR for giving me
the opportunity to speak to you today.
I was diagnosed with ET (the action tremor that afflicted
Katherine Hepburn) in 1991. For those
of you who are not familiar with ET, the only symptom is an action tremor
(tremor that occurs when using the hands to hold a glass, shave, etc.) that can
be very debilitating. The most famous
example of a person with ET is Katherine Hepburn. In early 2008 I began experiencing unusual fatigue, dizziness,
and cognitive problems in addition to the tremor, all of which became amplified
under any degree of stress. All I could
think of was that it might be related to my ET, so I made an appointment with
University of CO Hospital movement disorder neurologist Dr. Olga
Klepitskaya. After a thorough
examination, I was told that I had early stage Parkinson’s. This came as a shock as I had been assured
by a number of neurologists during the years since my ET diagnosis that I did
NOT have PD. I have learned since that
while this “evolution from ET to PD” is not typical, it is occurring more
frequently. I tried to follow Dr.
Klepitskaya’s advice to not over-react to my diagnosis, but decided to call my
wife, Linda, and have her come home early from work to share this news. I guess I am not the Lone Ranger type. If I were, I couldn’t ask for a better
Tonto.
My symptoms made it impossible to do the work I had been
doing as Marketing director for an agency in Colorado Springs. So after working for 38 years in various
sales, marketing and merchandising management positions with companies that
included General Electric, Panasonic, Federated Dept. Stores, and American
Express and obtaining an MBA along the way, my career was over with no fanfare. This was not the circumstances anyone would
hope for when starting their retirement years.
Following my diagnosis, I became obsessed with learning
everything I could about PD, which is a good thing up to a point. Late in 2009, I realized I was spending too
much time worrying about my situation and did not have much peace of mind. I decided it was time to reach out to try to
help others. I started a support group
in my retirement community and began to increase my involvement in other area
support groups and local clinical research studies. I found that support groups welcomed presentations about PD from
an informed fellow patient who was able to share helpful information about
general PD topics as well as what I have consistently found to be PWP’s biggest
concern, cognition problems including dementia. It wasn’t long before I was having patients referred to me for
one-on-one discussions about topics including motor & non-motor PD
symptoms, referrals to movement disorder specialists, cognition, medications,
alternative therapies, supplements, DBS, caregiver issues, planning for the
future and more. It is important to add
that I always shared information with the understanding that I am not a doctor
and that the most important thing any patient can do is to find a movement
disorder neurologist who has the training and expertise to provide the best
possible care based on their individual needs
Around the end of 2009, I learned that I would be an
excellent candidate for deep brain stimulation therapy (DBS), which is
sometimes described as a “pacemaker for the brain”, and was approved for the
surgery at UCH in April 2010. My wife
and I decided to delay the surgery until March 2011 due to insurance
considerations, which turned out to be a fortunate decision for a couple of
reasons. First, I was accepted for
participation in a clinical research study at the neurological division of the
National Institute of Health. This
experience armed me with additional information that would be valuable in the
future. Second, we started attending
DBS support group meetings, starting an important relationship with Kate
Kelsall and Valerie Graham that continues today. For those of you who don’t know Kate and Val, they are my heros. Not only did they start the first DBS support
group in the country, they provide invaluable support for DBS patients at UCH
throughout the surgery process and are tireless advocates for “PWP’s”.
My DBS procedure entailed three surgeries over a four-week
period during March and early April 2011. The first and second surgeries involved implantation of leads into
the thalamus (the target for patients for whom tremor is the main
problem). The third surgery was for
insertion of a battery-operated neurostimulator in my chest that would later be
programmed to generate pulses of electricity designed to eliminate the tremor.
During my neuropsychological exam, which was part of UCH’s evaluation process
for DBS, my small motor skills with both hands were described as “severely
impaired”. These slides are actual
examples of my small motor skills with my neurostimulator on and off,
demonstrating the amazing impact this surgery can have. I was virtually tremor free for the
first time in 20 years.
Early in 2011, prior to my DBS surgery, I decided to write
about my relationship with my then 7 year old grandson, Carson, and how I chose
to communicate with him and my other grandchildren about my illness. This slide shows the source of my
inspiration. When they asked why my
hands were shaking, I simply told them that Grampa has “Shaky Paws”. Later, I told them about my planned DBS
surgery, which I called a “special procedure” that I hoped would take away the
shakiness and allow me to have more fun with them. The original idea was to write something that I hoped would be
enjoyed by family members, but thanks to the support and encouragement of
friends like Cheryl, it has become more than that.
Carson and His Shaky Paws Grampa was accepted for publication in July and was
published in September 2011 with support from:
- Team Fox (Michael J. Fox Foundation)
- Muhammad Ali Parkinson
Center
- Davis Phinney Foundation
- Parkinson Association of the
Rockies
- International Essential Tremor
Foundation (IETF)
- SE Parkinson Conference
- National Parkinson
Foundation (NPF)
- European Parkinson Disease
Association (EPDA)
- Parkinson Society
Canada
- Parkinson's
UK
- Medtronic
- Parkinson's New
Zealand
- Parkinson
Alliance
- DBS-STN.org
- Parkinson Action
Network
- Northwest
Parkinson Foundation
In particular, interest and support from PAR and Medtronic, as
well as social networking, have enabled me to engage a new career as a
children’s book author and patient perspective PD advocate. Over the last six months, I have had the
privilege of speaking to support groups and prospective DBS patients, including
PAR-sponsored events in Colorado Springs and Loveland. PR for the book and it’s message have
included interviews on PAR’s website, in local papers, the Denver Post, a KOA
radio interview, and, most recently, a TV interview by the Fox affiliate in
Phoenix in conjunction with a presentation I made in March at the Muhammad Ali
Parkinson Center. This is the
picture taken in my home of Carson and me during the Denver Post interview.
I couldn’t have done any of these things without the love and
support of my wonderful wife of 42 years and caregiver, Linda (aka Tonto). We plan to travel to CA in late July to
participate in the Parkinson Disease Foundation’s Research Learning Institute
designed to continue the education of people involved in PD advocacy. I am currently working on a second book in
the Shaky Paws Grampa series titled Carina and Her Bionic
Grampa. At least two more books are
in the planning stages.
I am grateful for the opportunity, especially after the
disappointment of my “first retirement”, to be involved in work that gives me
the opportunity to be helpful to others as well as to learn from them. I can honestly say that I believe that,
without knowing it, I have been preparing for this opportunity my whole
life. To quote Michael J. Fox, “I am a
lucky man”.
Thank you for your interest and for your support of the
Parkinson community.
