Tuesday, May 18, 2021

How I Became a Parkinson’s Advocate



I never had a plan to become an advocate.  A couple years after I was diagnosed in early 2008, I realized I was spending too much time worrying about myself and what the future would hold for my wife and me.  Actually, I had been thinking and praying about this when the doorbell rang.  It was a friend from our church dropping off a “prayer blanket” to provide comfort in my “time of need”.  I was blown away by this thoughtful gift as well as the timing.  There are many examples of this sort of thing happening in my life that might be thought of as coincidental.  I believe otherwise.

The first thing I did was sit down with that blanket and give thanks to God.  Then I prayed for everyone who had been supporting me and Linda, as well as those I knew of who were in need themselves.  I resolved to “give back” by spending more time thinking about, praying for, and trying to help others in any way I could.

Since I had been spending so much time learning about PD to try to help myself, I realized I was in a position to share that information with others.  Since then it has occurred to me that so much of what I had done in my business career had prepared me for the work I now chose to undertake.  Another non-coincidence (ANC).  Although I had never written anything but letters, school papers, strategic plans, and business reports, I was inspired to write a children’s book for my grandchildren based on an exchange with them about my “hands shaking”.  Since I was unprepared for this, I said “Grampa just has shaky paws”.  There were four of them, ages 3-7 at the time.  They seemed satisfied with this answer.  I wrote the book, Carson and His Shaky Paws Grampa” as a gift to them.  A shared it with a neighbor who is a retired elementary school librarian (ANC) on a whim.  I was surprised when she told me it would make a great picture book and that there was a need for books that could be used to help parents and grandparents communicate with children regarding serious illness.  Without knowing what I was doing, I made connections with an illustrator who was also a PwP (ANC) and found a publisher who made me an offer!  The last part of the book had to do with the impact that DBS surgery (this happened between starting and finishing the book) had on me (no more shaky paws!) and my relationship with my oldest grandson (ANC).

This innocent little book led to speaking opportunities with support

groups that allowed me to share what I had learned about PD and my

DBS experience.  They had never had “one of their own” do

a presentation for them and it was clear that they found it

interesting on a different level than presentations by medical

practitioners.  After doing more of these in the Denver area, I

was asked by the DBS manufacturer (Medtronic) to do presentations

in Phoenix.  This led to an interview about the book and PD with Fox

News there.  This led to a keynote speech for Parkinson

Association of the Rockies, more interviews, lots more

presentations and a second children’s book.

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