Presentation at PAR Triumph Breakfast

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.