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

The Power of Engagement

Engagement is crucial to the quality of life of PwPs and care partners.  It is something we all have a great deal of control over.  It has many positive benefits for you and sends a powerful message to family and loved ones that you want to do everything in your power to maximize your time with them!

Engagement in this context refers to the interaction between a PWP (person with Parkinson’s) and the world around them.  There are many different types of engagement including physical, mental, social, hobbies/passions, and spiritual (some of these overlap). 

Physical engagement refers primarily to exercise, which is a proven way to slow Parkinson’s disease (PD) progression.  Do as much as you can SAFELY!  Consult your neurologist about what and how much exercise is right for you.  There are classes available in many parts of the U.S. for PWPs and care partners including Rock Steady Boxing, yoga, dance, and basic exercise.  Walking is a good basic exercise.  The idea is to get up out of your chair and move around as you are able.

Mental engagement can include reading, writing, watching educational programs on TV, doing puzzles or games, singing, participating in sports, discussing world events and much more.  The goal is to maximize neuroplasticity for as long as possible.

Hobbies/Passions are a type of engagement I like to highlight for a number of reasons.  They involve physical and/or mental engagement as well as social engagement in some cases (sports, music, dance, board games and much more).  By definition, they involve activities that are personally enjoyable.  We are all more likely to engage in activities we enjoy as opposed to things we have to force ourselves to do.  At the risk of getting “into the weeds”, these types of activities often result in the production of endorphins which can have a very positive effect.

Spiritual engagement is important to many, but not all, of us.  For those to whom it is important, this can involve active participation in their faith and related activities such as prayer and attending a place of worship.  For others there is a belief in a “higher power” they experience through nature, music, art, or meditation.  If it is important to the individual, it is a good thing to maintain that connection.

There is a tendency for patients to become depressed and withdrawn as PD progresses leading to faster decline.  Engagement can help PWP’s fight off two very common problems – apathy and depression.  I have a personal favorite based on my own experience that I call altruistic engagement which involves trying to make a difference in people’s lives.  It was my faith that led me in this direction when I realized that I was experiencing apathy and depression due to spending too much time thinking and worrying about myself.  Consider options like participation in clinical research studies, brain donation, writing a blog, assisting with a support group, or something as simple as spending time with someone who is struggling.

I recommend that you think about what engagement should look like for you.  Enlist your most important asset, your care partner, to help with this.  Benefits include your personal wellness, reduction of stress for your care partner, and peace of mind for your family.

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Kirk Hall

The Joys and Challenges of Parkinson's Advocacy

 

There are good days and bad days when you are a PD Advocate, like anything else.

Linda and I got in the car at 8 am to drive up to Greeley to fulfill a commitment to speak at the PD support group there.  After stop and go traffic on I-25 through the Tech Center and construction slowdowns/bumpy roads, we arrived in Greeley with time to spare (or so we thought).  I was riding shotgun (as always) and was in charge of navigating us to our destination with the help (?) of mapquest.  This created two problems; mapquest directions often are convoluted and I get confused/flustered very easily.  Within minutes, we were pretty much totally lost.  Then we thought we were back on track but the road ended at a reservoir and we were lost again.  Linda asked a nice lady who was walking her dog for help, and she was more than happy to give it.  Unfortunately, in spite of her enthusiasm for the challenge, she knew less than we did.  We pulled over and Linda quickly came up with a new game plan, a key part of which was to put me on the bench.

When we rounded a corner and heard beagles barking in the distance (this part may not be 100% factually correct), we knew we were on the right track.  We arrived at our destination ten minutes late.  Now all of this may sound like “no big deal” to most people, but I was a basket case.  Stress and PD don’t mix.

I went inside and asked a nice young lady if she could direct me to the PD support group meeting and was met with a blank stare and the sound of crickets.  Another lady joined her, but she didn’t know either.  Just as I was about to give up another lady came along who knew where I should go (I know what you are thinking and you should be ashamed!). 

We entered the room as people were talking about the possible role of the gut as a starting point for PD (we knew this wasn’t a group of rookies).  We were introduced and found a place to sit. 

At that point, I actually did something smart (or at least Linda told me it was later).  I admitted that I was stressed out from the trip and asked for a few moments to “collect myself”.  Since I was surrounded by PwPs and care partners, everyone understood totally.  The meeting went very well.  They were very interested in our palliative care research study at University of Colorado Hospital (we are members of the patient/caregiver advisory council).  We talked about many other subjects, notably the importance of working with a movement disorder neurologist (MDN).  Predictably, not everyone was doing that for a variety of reasons, the main one being that there are no full time MDNs in that area.  We were able to share with them the idea of working with a local neurologist and a Denver-area MDN as a team as well as the growing trend toward telemedicine.

As I was closing (there was applause which is always good), I mentioned that I had brought a few copies of my Window of Opportunity and Shaky Paws Grampa children’s books in case anyone was interested.  At that point, a caregiver stood up holding a copy of the “Window” book.  She told the group that the book had great value to everyone with PD and that it has been very helpful to her (plus more nice stuff I can’t remember).

Anyone who has put their heart and soul into writing a book that they hope will “make a difference” in the lives of people they care about so much (in this case, all my PD brothers and sisters) will tell you that a comment like this makes it all worthwhile.  As you can imagine, it was difficult to get the words out to thank her adequately.

We were impressed by the group's leader, Ann Rich, and asked her how she got involved.  She lost her father to Parkinson's a few years ago and feels committed to helping others with PD to honor his memory.  She also shared how she wished that palliative care had been available for him as there had been avoidable problems.  It was obvious that she had a real connection with her group.  At that point, everyone in the room expressed their gratitude for her caring and service.

In spite of the challenges we experienced on our journey, the joy we experienced in our interaction way more than made up for it.  It was a good day. 

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