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

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

An Unexpected Phone Call

I was sitting on my patio with my wife reading a book, listening to our two water fountains and enjoying our “meditation garden” when the phone rang.  The screen showed that it was from UC Denver (my hospital for neurology).  I also have a battery replacement surgery scheduled for my DBS and am working with a physical therapist due to pain in my shoulder and hip.

To my surprise, it was the PA for my movement disorder doctor (Dr. Benzi Kluger), Julie Berk.  I met Julie years ago (maybe 2010) when she was assisting Dr. Kluger with some research I was involved in.  When I had my DBS surgery, she was the specialist who adjusted the settings on my stimulator.  After I wrote my first children’s book, Carson and His Shaky Paws Grampa, I did a number of presentations about DBS that also gave me an opportunity to talk about the book since it told my DBS story through my grandson’s eyes.  The neurologist who participated in my DBS surgery was scheduled to speak with me, but she was out of town, so Julie joined me to provide a medical perspective.  I remember seeing her at various Parkinson Association of the Rockies (PAR) events in the following years.  It was always good to see her and my wife and I thought of her as a friend.  We lost contact when she switched to another department to broaden her experience.  Then, earlier this year, she rejoined Dr. Kluger as his physician’s assistant.  I learned that she was very interested in his palliative care work and wanted to get involved.  Anyway, to make a long story less long, Dr. Kluger got Julie involved with my appointments and I began meeting with her as a first step (she would then confer with Dr. Kluger and decide on a course of action regarding that particular appointment).

About a month ago I became very concerned due to a variety of symptoms occurring at once.  I was trying to understand what was going one and began to think that I was dealing with some kind of parkinsonism.  I sent an email to them that shared my concern and speculation and they scheduled an appointment for me with Julie.  Linda and sat with her for an hour or more and I poured out all my angst and concern on Julie.  I was quite agitated and Julie was concerned because she had never seen me this way.  However, she did a good job of reviewing what had been going on over the last few months including any changes.  She picked up on the fact that I had increased my dose of Rytary, my primary PD medication, to the original prescription without discussing this with Benzi.  In fairness to me, I had decreased the dose shortly after starting with Rytary a couple years ago based on my reaction to it, which turned out to be something Dr. Kluger agreed with.  In this case, as it turns out, my decision backfired on me.  I was experiencing confusion and a variety of other symptoms.  After talking with Benzi, she told me to gradually decrease my dose to what I had been taking and let her know how I felt. I also agreed to see a UC physical therapist to address the hip and shoulder pain.

Fast forward a couple weeks.  I made the change and felt considerably better.  I had a number of sessions with the physical therapist and was at least making progress.  Additionally, I scheduled a consult with a general surgeon regarding a hernia that was discovered through an appointment with my regular doctor regarding my hip pain.  I think the reduction in Rytary allowed me to think more clearly and take action to get these other problems moving in the right direction (a good thing, as I had to schedule surgery for a DBS battery replacement in the last week).

So, back to the phone call.  It was Julie calling just to check on me to see how I was doing!  I was blown away that she would take the time to do this and told her so!  I was able to share that the change she recommended had apparently been a very good thing and went on to share about the progress with the physical therapist and the two surgeries I had scheduled.  She as glad to hear that I was making progress.  Then we talked about palliative care for a few minutes and her interest in getting involved with Diane Cook’s ground-breaking self-efficacy program for PD patients (PD Self).

I wanted to write this article for two reasons.  First, to honor Julie.  She didn’t see it as a big deal, but I did.  Second, to share my encouragement that the “patient-centered” movement is continuing to evolve.  I have said many times that God has blessed me in my PD journey.  Julie is another example of this fact.

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Kirk Hall

Palliative Care and Counseling

I have been having trouble coming up with ideas for a new blog article (they usually “appear” in the middle of the night).  Either I can’t remember the detail of the idea that made it interesting (at least to me) or the idea turns out to be “not as interesting” in the light of day.  The bottom line is that the articles I used to post fairly frequently (the latest count since inception in 2011 is 160+ articles) are becoming few and far between.

It is disappointing to me that this has happened.  But like the old man who has been thrown on the cart with the dead people in Monty Python and the Holy Grail, I am “not quite dead yet”.  I am still involved in the PD palliative care research project with University of Colorado Hospital that is so important to me.  Recruiting for the study is close to completion and there will be opportunities to contribute in the end stages.  I am a “blogger partner” for the 2019 World Parkinson Congress in Kyoto for which I will be writing one article for publication in April 2018.  There are no plans in the works that I know of for a third meeting of the International PD Palliative Care group, though follow up work from previous meetings continues.

That said, I have been aware that my ability to contribute has declined and my “shelf life” is running out.  I can see that the same thing is happening or has happened with many of my “highly-engaged” friends.  I am sure I am not the only one feeling a sense of loss because of this.  Along with that is a feeling of guilt that I may be letting people down, which indicates an exaggerated sense of my importance, but is nonetheless true.

It was these feelings and subsequent thoughts that led me to write this article.  It is totally predictable that the “black hole of PD” will eventually drag us all down.  But is there a way that the angst that peaks in later stages of PD could be managed or minimized?

It seems to me that the best way to address these issues (that are predictable for all PwPs and care partners) already exists in our PD palliative care model, which recognizes the probable need for counseling.  In our study’s model, the social worker and “spiritual advisor” are designated to deal with these issues.  All these thoughts have led me to believe that we may have underestimated the need for counseling and the current model’s ability to address that need.  I think we need to consider adding a psychologist to the team who will have the experience and expertise needed.  At the same time, I think that palliative care providers need to become more proactive in offering appropriate counseling services for PwPs and care partners individually and together.

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