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

 PD SELF: History and Status by Diane Cook

I asked my friend and fellow PwP, Diane Cook if she would be willing to share background information regarding her PD Self program.  She graciously provided the following:

 

PD SELF: History and Status

Diane Cook

August, 2017

 

Initial Study

 

The PD SELF program (Parkinson’s Self-Efficacy Learning Forum) was developed in 2013 by Parkinson’s patient Diane Cook as part of a clinical study sponsored by the Colorado Neurological Institute. The study examined whether this program improved physical, emotional and social functioning and quality of life in newly diagnosed persons with Parkinson’s disease (PWP) over the 12-month period of the intervention and one-year follow-up.

 

Initial Program Description

 

The program, led by two trained facilitators (one with PD), met monthly in a community setting over the course of 9 months. The program was designed specifically to introduce and support self-efficacy behaviors by applying Stanford psychologist Albert Bandura’s method of enhancing self-efficacy. Self-efficacy is the belief that we can achieve influence over our life circumstances. Extensive research has shown that self-efficacy can mediate behavioral change.

 

Participants learned how to create a health care network, communicate more effectively with their doctor, track their symptoms, and use neuroplasticity to support their health behavior change. Parkinson’s experts from a wide variety of fields shared their knowledge and perspectives on the major aspects of PD, from medications to nonmotor symptoms to changes in cognition. Participants received notebooks with supporting materials, exercises, resources, etc. Sessions were highly interactive, and participants created personal disease management plans. Interaction among participants, all at the same stage of the disease, provided peer support and connection that often lasted beyond the end of the program.

 

Expansion as National Pilot of the Parkinson’s Disease Foundation

 

After an additional two local programs in Denver, Colorado, in 2016, the Parkinson’s Disease Foundation launched PD SELF nationwide as a national pilot program. Teams of volunteer facilitators, comprised of a health care professional and a Parkinson’s patient, were trained in 9 communities from around the US1 and have just completed the delivery of the program to approximately 180 persons with Parkinson’s and 100 care partners (CP).

 

 

 

 

Results

 

Results from both the study and the pilot were very positive and showed significant improvement in self-efficacy leading to improved anxiety, depression, stress and perceived support. Longitudinal results of the program show continued stable psychosocial functioning despite worsening symptoms, suggesting a change in behavioral patterns.  Care partner results also showed a significant improvement in self-efficacy resulting in less care partner stress and increased ability to perform care partnering support tasks.

 

This expansion of the program tested the scalability and effectiveness of the program when delivered by teams with a wide range of experience. Results were consistently positive from location to location, suggesting that effective training of facilitator teams coupled with clear curriculum materials allow us to make this program available to newly diagnosed PD patients and care partners in additional locations and expect similar results.

 

Next Steps   

 

Seven of the nine locations are launching another cycle of PD SELF program in the fall of 2017 in addition to adding a Spanish version to be offered through the Muhammad Ali Parkinson Center in Phoenix.

 

Fundraising for further expansion will be conduced in the fall of 2017 with the hope of conducting  another facilitator training in the spring of 2018 for additional teams from throughout the US.   It is our hope to at least double the number of program offered in 2018.

 

Parkinson’s is a chronic, progressive disease, and the patient and care partner alike are faced with ever more difficult challenges as the years pass. Equipping both patients and care partners with a personal approach to managing their disease and the perspective, behaviors and tools that are applicable over time will result in slower disability and better quality of life for a longer period of time.

 

1. 2016/2017 Cities and collaborating organizations:

                  Houston (Houston Area Parkinson’s Society)

                  Tampa (University of Southern Florida Health)

                  Detroit (Michigan Parkinson Society)

                  Richmond (Veteran’s Administration)

                  Philadelphia (University of Pennsylvania Health Services)

                  Longmont (Davis Phinney Foundation)

                  Denver 1 (Colorado Neurological Institute)

                  Denver 2  (Parkinson Association of the Rockies)

                  Phoenix (Muhammad Ali Parkinson Center, Barrow Neurological Institute)

 

2. Participant comments

 

o   PWP responses (representative sampling)

      When PWPs were asked to identify some of the most important things they learned in the program:

 

§  “How important a support system is”

§  “To not just let things happen to me; to be the Director of my life”

§  “We have choices. We have tools to fight against this disease. We can make a difference.”

§  “My attitude is the most important factor in creating a healthy life”

§  “Tools I can use for the rest of my life”

 

      When PWPs were asked to identify changes in the way they think about themselves or PD since they started the program:

 

§  “I’m more confident, knowing there area things I can do to improve my quality of life”

§  “I never used to set goals for myself, but now I see the value in that”

§  “Accepting of my PD and my life and the changes that are coming”

§  “Less of a victim”

§  “Start early and take the lead on your own health”

§  “More positive outlook.  I feel empowered.”

§  “I have become much stronger emotionally and physically”

 

o   CP responses (representative sampling)

When CPs were asked to identify changes in the way their PWP thinks about themselves or PD since they started the program

 

§  “She admits to herself when she does not feel well, and finds ways to bounce back”

§  “He is more open with his feeling. He is more proactive in seeking solutions.”

§  “More willing to go into action to utilize resources”

§  “More energy. Positive attitude. More motivation.”

§  “More positive about remaining independent”

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Kirk Hall

Reflections on Time

WPC blogger partner

I just finished reading a thought- provoking, inspirational book that I highly recommend on my Kindle Fire called The Time Keeper by Mitch Albom.  By the way, I got it for free as an ebook through my library on Overdrive.  All you need is a library card and some type of electronic reader to have access to thousands of books!  I enjoy reading even though it is a “draining” activity.  Probably good for my brain, which can use all the help it can get!

Time itself is a precious commodity.  Albom’s book looks at how the measurement of time, which we can’t imagine living without, has real potential downsides in the hands of humans.  The book is described in reviews as a “fable”.  It certainly is creative and a very interesting read.

Since reading the book, I have been thinking about how it might apply to me.  I noticed very early in my PD journey that I had begun to experience time in a different way that I described as “ethereal” (a fancy word that I don’t get to use a lot).  I was having trouble keeping track of time (like what day, month, or year it was) plus chunks of time seemed to go by very quickly when viewed in hindsight.  I am sure that my inability to remember much of what I had done the previous day, week, or month was a contributing factor.

Reading the definition reminded me of another favorite books, Proof of Heaven by Eben Alexander, M.D.   One of the things I remember about Dr. Alexander’s near-death experience is that, when he “returned”, he described having been “gone” a very long time.  Comparing this to my sense of large amounts of time
“disappearing” led to an epiphany of sorts, at least in my mind.  Perhaps it is too much of a stretch to compare my ongoing personal time observation with that of Dr. Alexander’s.  Perhaps not.

None of us know how much time we will have on this earth, but we all have the opportunity to decide (as long as we are able to decide) how we want to spend that time.  As I have said before, Linda and I decided some years ago what we wanted our final years to “look like”.  We decided that our goal would be to “finish the race well”.  Mitch Albom has provided a useful framework for helping make that happen.

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