My advocacy journey started in
the fall of 2011 when I gave a presentation on
deep brain stimulation at a senior living residence facility in Colorado
Springs. I was the only “non-medical
professional” presenter. When I spoke,
the audience seemed to be more “engaged”.
It could have been the topic, but I got the distinct feeling that I was
an anomaly because I was their first “patient presenter”. They seemed to listen with “different ears”. I got a lot of positive feedback that
encouraged me to do more.
I had heard about the 2010 WPC
in Scotland from Kate Kelsall and Valerie Graham who I had met at a DBS
information meeting at the Parkinson
Association of the Rockies in Denver.
They had received financial assistance that enabled them to attend. They were almost breathless with excitement
when they returned and shared their experience with me. So, when the 2013 WPC site in Montreal was
chosen, my care partner/wife (who turned out to be my advocacy partner as well),
Linda, and I decided to go. We had
recently attended a Parkinson Disease Foundation (PDF)
Parkinson Advocate in Research (PAIR) training program, so we were psyched
up and ready to go.
We arrived in Montreal a day
early to participate in meetings with doctors to discuss key topics like DBS,
Cognition/memory issues, etc. as part of a patient-centered initiative by PDF. This was a first and reflected a major topic
at this congress which was all things patient-centered/patient-focused. This included not only treatment, but also
pursuit of patient input and involvement on many levels! I have referred to this development as a “big
bang” event when the PD world recognized that patients and caregivers should be
central to healthcare planning including their needs, wants and knowledge. They should also participate and provide
feedback in research, the idea being that these folks are the ones who live
with this disease. This puts them in a
unique position that has value!
I became conscious of the “we”
aspect of being a PwP at Montreal, which I would describe as a sense of
community among PwP’s and care partners.
They build and renew relationships that produce a “culture of caring”
that is palpable. There is also an
opportunity to get to know doctors and researchers through presentations and
individual interactions that can stimulate learning and build networks. For example, I attended a presentation by Dr,
Janis Miyasaki who I had learned was involved with development of palliative
care for PwP’s. I had an opportunity to
speak with her afterwards, beginning a relationship of mutual respect that
blossomed into another “big bang” moment, the genesis of an international
consortium to explore and develop PD palliative care as well as PCORI-funded research
and implementation that continues today.
I left Montreal feeling extremely
motivated, energized and full of ideas!
I did a major rewrite of a book I had been working on for the last two
years. My “advisors” were very pleased,
and it was published! In the months that
followed, my advocacy work accelerated. A
talented friend helped me create a “patient perspective” website and blog (which
became one of Healthline’s Top 10 PD blogs for five years) with a new “Shaky
Paws Grampa” brand and logo, and a PD Facebook page.
In the years following the
Montreal WPC, PD palliative care, which was a great fit with the
“patient-centered” movement due to its focus on quality-of-life improvement for
PwP’s, care partners and families, took shape.
As the 2016 Portland conference approached, PD palliative care (PDPC)
was on the docket. It was the thrill of
a lifetime for me to be included as a presenter on this subject as part of a
panel led by Dr. Benzi Kluger (my movement disorder doctor since 2009 who had
become my PDPC colleague). This gave me
an opportunity to provide a patient perspective on PDPC that was well received
and that became the subject of a published paper. Heady stuff!
Research supported the value of PDPC and led to training and
implementation of PDPC at the Parkinson Foundation Centers of Excellence in the
U.S. For me, this all started in
Montreal and felt very much like a “God thing”.
In addition to being a
presenter, I was more involved with WPC 2016 as a “Blogger Partner”. This gave me an opportunity to many of my
advocacy colleagues for the first time, as well as Executive Director Eli
Pollard who has played a major role in the growth and success of this enormous
event! I have appreciated and valued my
interaction with Eli during the subsequent years.
As a side note, singing was very
important to me prior to my PD diagnosis in 2008. I learned that my singing voice was likely to
suffer (as it later did in the much more noteworthy cases of Linda Ronstadt and
Neil Diamond). I joined a vocal rehab
group in the Phoenix area in 2016 after acquiring a “snowbird condo” due to a
confluence of good fortune and my growing problems dealing with winter in
Colorado. WPC 2016 provided me an opportunity
to sing with the WPC choir at the opening ceremony. My voice has continued to deteriorate in the
years that followed. However, it has
been slowed by my participation in Tremble
Clefs (TC) while I have been blessed
to be able to experience the joy of singing with fellow PwP’s and care partners
who have become “near and dear” to my heart.
I am committed to helping the TC concept flourish and grow. This goal is shared by our TC Director, Sun
Joo Lee, who has an undergrad degree in voice and music therapy. She has taken her commitment to another level
by pursuing a Ph. D. in music therapy at the University of Iowa. The subject of her dissertation will be Tremble
Clefs. God continues to bless me. Hot off the presses, I just received this
exciting information:
Arizona Tremble Clefs has been
selected to receive a
Congressional Recognition Award from Congresswoman Debbie Lesko, US House of Representatives 8th congressional district, for their
contributions to the Arizona Parkinson’s community.
Gradually,
in the years following WPC 2016, I became aware of changes that led to some
tough choices. My speaking skills were deteriorating,
my ability to think clearly, especially under any kind of pressure, was
declining, and my memory was unreliable.
I was not meeting my own expectations for managing my website. New blog
articles were few and far between. With
regret, I shut down my website and PD Facebook page, out boarded my blog, and stopped
making advocacy presentations to support groups. I chose to limit my advocacy involvement to
the remainder of my PDPC commitment and Tremble Clefs. I decided that I would not attend the 2019
Kyoto WPC.
All
our lives were disrupted by the pandemic during 2020-21. 2022 was a mixed bag and it officially ended
in May 2023. My AZ TC group lost many
members and is just regaining its momentum this year. The 2022 Barcelona WPC had to be postponed to
July 2023. I really wish I could be
there, but I am sure it will be another big success and create many lasting
memories!
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