Monday, May 15, 2023

A Parkinson Advocate’s WPC Memories



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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