Kirk's Blog

parkinsons best blogs badge
Healthline

Kirk started writing articles for his blog around the time his first book was published (September 2011). Not having any other bright ideas at the time, he adopted the book title as his “brand” for the blog. Over time, Shaky Paws Grampa (SPG) has become his “identity” in the PD world. The good news is that he hasn’t had to fight anybody for it and there was no competition for the web address (understandably).

He didn’t have any clear goals in mind for the blog when he started other than to make his target audience the “PD world”, opting to write about what ever inspired him at the moment. Over time, various themes emerged:

Book or writing-related
PD-related information
Clinical research study advocacy/participation
Cognition issues
Living with PD-personal
PD meeting/conference announcements
SPG speaking engagements, media interviews, and webinars
Calls to action
Personal

Three years later, he has posted 120 articles that have been viewed by readers from over 60 countries around the world.

An Open Letter to Linda Ronstadt and Neil Diamond

 

 

Dear Linda and Neil,

 

I know it is highly unlikely that you will ever see this but I am going to write it with the hope that you will.  

I am going to talk to you both as friends, though we don’t know each other.  You may not know this yet, but by virtue of having PD you have become members of what I like to think of as the “PD family”.  It took me a couple years to realize this.  Any time I am with fellow PwPs (people with Parkinson’s) and  their care partners (our term for caregivers) there is a palpable sense of love and caring unlike anything I have experienced outside my immediate family and close friends.  We are willing to be honest and open with each other because we know we are in this together.  We want to do anything we can to help each other in ways that are both large and small.  We want to improve the quality of our lives and those of our families and loved ones.   This gives us strength and hope.

My wife (also Linda) and I attended our first World Parkinson Congress (WPC) that was held in Montreal in 2013.  We also attended the 2016 WPC that was held in Portland. Preparations are currently under way for the 2019 WPC that will be held in Osaka, Japan. These are amazing international events where members of the PD medical and research community from all over the world, representatives of Parkinson organizations (like the World Parkinson Coalition,  Michael J. Fox Foundation and the Parkinson’s Foundation) suppliers of PD goods and services, as well as PwPs and care partners.  It was at that first (for us) WPC that I really began to realize the scope and uniqueness of the universal caring that I am trying (inadequately) to describe.  It was overwhelming.  It was also at this time that I became fully committed to trying to find ways to “give back”.

My hope for both of you is that you will find ways to experience this yourself.  For some, there is a natural tendency to isolate themselves and deal with PD in private.  That may not be the case with you.  If it is at all true for you, I strongly encourage you to fight that urge and engage the “PD world”.  If and when you do that, it benefits us all.  I realize that I may be “preaching to the choir” since there are other celebrities who are highly engaged (Michael J. Fox, the late Muhammad Ali and more).  If you are interested in exploring ways you could become involved, there are many resources available, the most obvious being to talk to someone who lives in the PD world, like Michael J. Fox.  I am sure he could come up with a variety of good ideas.  Another option would be the Executive Director of the World Parkinson Coalition, Elizabeth “Eli” Pollard (email: eli @worldpdcoalition.org) who is involved with just about every aspect of the PD world.

She could provide input regarding a specific idea.  There is an organization that provides singing opportunities  and voice therapy for PwPs called Tremble Clefs.  I sang with them at the last WPC at Portland in 2016.  The driving force behind this organization is Karen Hesley (khesley@hotmail.com) who created a group in the San Diego area.  Tremble Clefs is therapeutic for voices as well as cognition and often has a very positive effect on quality of life.  Perhaps you would be willing to explore ways to become involved in expanding this life-changing program.

I wish you all the best in your PD journeys.  Thanks for listening.

 

Sincerely,

Kirk Hall

PD Advocate

Legacy