Kirk's Blog

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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.
Kirk Hall

Legacy

It is 4:30 in the morning.  I do a lot of my “deeper” thinking during the night.  It seems like I have better “clarity” at that time.  Possibly because there is less mental traffic to clog my circuitry.  Another possibility is that my judgement is not great at that time, which leads to ideas that “lose their luster” in the light of day,

In any case, I have been thinking about the above topic since writing the piece yesterday morning about Robin Williams.  I think most of us, or at least some of us, think about what our legacy will be from time to time.  That may lead to thinking further about what we would like it to be.  I spent a lot of time in my business career doing strategic planning.  One of the most important parts of this process was deciding “where you were trying to go” as an organization.  Later in my career I had a business that helped people with career planning which often started with the individual answering the question “what do I want to be when I grow up”.  In other words, developing an individual strategic plan.

That is all any of us can really do when it comes to our legacy.  Imagine someone describing our legacy at some point in the future and what we would like to hear them say.  Then we at least have the opportunity to do things that might lead to those comments after we are gone.  Because legacies can’t really be built.  They are described in hindsight.

When I look back at my career “pre-PD”, it seems to me that much of what I did in my business career was preparing me for what I have been trying to do as a PD advocate (my current job description).  If I had died at 59 instead of being diagnosed with PD, I can’t imagine my legacy being very memorable when it comes to my career.  Actually, I think my legacy would have been the wonderful boys that Linda and I raised.  I still believe that will be our most important legacy.

So where am I going with this?  I better get back to that or I will lose the thoughts that got me out of bed.  Regarding my “advocacy career”, I feel that I am doing work that is personally meaningful for the first time in my life.  That is a real gift!  I don’t spend a lot of time thinking about what I am going to do.  One thing leads to the next thing and so on.  It has been that way since I was diagnosed.  It has become more challenging to maintain my “forward momentum” the last couple years.  But each time I have “slowed down”, it seems that I eventually have been motivated to “re-enter the fray”.  I don’t really know if anything I have done or will do has any lasting value.  That is not and can’t be my motivation.  That will be for whoever is in charge of describing my legacy to decide.  I am just grateful to have had the opportunity to finally do something that seems important.

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Kirk Hall

Robin Williams' Legacy

  

 

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Robin Williams will be remembered by the general public for his “unearthly” spontaneous comedic wit as well as superlative acting in movies that include Dead Poet’s Society and Good Will Hunting (I loved both of these, but would also include another personal favorite, the classic comedy movie RV). 

In the PD world, I believe his legacy has been “etched in stone” thanks to a letter written by his wife, Susan, to the Neurology journal.  I posted this link of my PD facebook page last week.  It has been viewed over 1000 times and has been shared 11 times.  For my FB page, this is an enormous response, which made me wonder: Why?

One of the reasons is Williams’ popularity and the tragic nature of his death.  There has been a great deal of speculation about his illness and what may have motivated his actions at the end.  Susan fills in the blanks in a thoughtful, informed letter she sent in hopes that, by doing so, awareness could be raised that will help others in the future.

So, the second reason is that, by sharing Robin’s experience in painful detail, she has done the PD and Lewy body dementia worlds a great sevice.  As an advocate with (at least) mild cognitive impairment, the distinction between PD and dementia with lewy bodies (DLB) is something I have been personally interested in for almost ten years.  It motivated me to write a book on this subject that included my personal experience.  It led to my relationship with the Lewy Body Dementia Association (LBDA) and participation in a webinar designed to build awareness about LBD/DLB in the Parkinson’s world.

The type of dementia experienced by most people with Parkinson’s (PwPs) falls into the LBD category.  This is something all PwPs who want to be active participants in the management of their disease need to know as 85% or more of PwPs will experience LBD/DLB during their lifetimes.

LBD is not the same thing as Alzheimer’s (AZ).  LBD is the second leading type of dementia after AZ.  It is a terminal condition.  LBD falls into a category of illness called “atypical parkinsonism”.  These illnesses have symptoms similar to PD, but the causes and treatment are different.  Some medications used for PD can be very harmful to people with atypical parkinsonism, therefore it is very important to get an accurate diagnosis.  This poses a problem as “parkinson’s plus syndromes” (as they are also known) are usually difficult to diagnose.  This is yet another reason why it is crucial to work with a movement disorder neurologist as opposed a general of different specialty neurologist.

Awareness around this subject is growing which is a very good thing.  For more information, visit the LBDA website.

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