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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

Wassup with SPG

 

Just when I thought I was ready to begin to slow down a bit, my plans were derailed. But in a good way.

My involvement with the West Side Tremble Clefs PD singing group is taking center stage right now. We have a major fundraiser this Sunday (November 12) at the United Church in Sun City, AZ. Though my voice is not what it used to be, I am one of a number of folks singing solos. There are 60+ voices in the group in various stages of PD. Some still have outstanding voices. Some have regained or dramatically improved their voices due to participation in the group, which is led and inspired by Sun Joo Lee. I have been communicating with the founder of Tremble Clefs in San Diego, Karen Hesley, about organizational strategies they are pursuing. She has been very helpful and we plan to stay in touch.

The PD palliative care research study I have written about previously has finished the recruiting phase, about half of the participants have been interviewed, and analysis has begun. Linda and I are among the caregivers and PwPs who are participating in the analysis by reviewing transcripts of the interviews and providing feedback. Consistent with the rest of the project, we thought it would be important to provide patient/caregiver feedback. We plan to be involved in the balance of the study which should be finished some time in 2018.

I am once again a blogger partner for the upcoming World Parkinson Congress to be held in Kyoto, Japan in 2019. I spent a good deal of time in Japan when I was working in the consumer electronics industry back in the 80’s and early 90’s.

Linda and I continue to be members of the Parkinson Advocates in Research (PAIR) program which is now part of the new Parkinson Foundation organization. We have both participated extensively in clinical research studies.

We have also both been very involved with the Parkinson Association of the Rockies (PAR). One of the highlights of the year for them is their annual Vitality Walk fundraiser. Linda has been a member of the organizing committee for a number of years and two of our grandchildren participated this year as volunteers. We were honored to take part in the filming of a tribute video along with our two grandchildren. This enabled us to see a side of them we don’t often see.

Don’t get me wrong, we still have plenty of time to enjoy life and live in the moment. Actually, I think our involvement allows us to enjoy our “down time” even more!

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Kirk Hall

I Have a Dream Today

Tremble clefs group 

West Side Tremble Clefs

 

I am going to ask my friends in the PD world for some help today.  But first, some background to provide context.

I have been looking forward to rejoining the Tremble Clefs singing group for people with Parkinson’s (PwPs) in the Sun City, AZ area this fall.  I had the chance to sing with them in early 2012 when I was in Phoenix doing presentations to Phoenix area support groups in conjunction with Medtronic and the Muhammad Ali Parkinson’s Center.  When my wife and I became “snowbirds” in 2016, I started singing with them on a regular basis.  I thought it might help rebuild my singing voice which had pretty much “gone south” over the past few years.  I had no idea how it would impact my life.

I have now been a member of the group for over a year.  It does help both my singing and speaking voice when I am participating on a regular basis.  We practice every Wednesday for two hours at a church in Sun City.  Our leader, Sun Joo Lee, takes us through warm ups that include stretching, vocal, and cognitive exercises.  Then we rehearse songs that we will be singing at upcoming performances at churches, retirement residences, and other venues in the area.

I am somewhat of an introvert, so it took some time for me to become comfortable with the group.  Plus I was self-conscious due to the change in my singing voice.  Gradually, I became less focused on myself and more aware of the people around me and our leader.  The group is made up of as many as 60 individuals, male and female, some with PD and some caregivers. Sun Joo is our director and we have a keyboard accompanist. 

Sun Joo is extraordinarily committed to the group (she works with our group on the west side of Phoenix, another on the east side and one in Scottsdale).  She clearly loves everyone in the group and they love her back in spades!  She shares information about former members of the group and health problems of current members.  She arranges parties for group members and the inevitable funeral plans that come up.  She makes copies of music, plans future events, and so much more.

The PwPs in the group are at various stages of the disease.  Some have minimal symptoms, but many are in advanced stages that include dyskinesia, significant cognitive issues, slowed movement, and balance issues.  There are many symptoms beyond the ones that can be seen.  They are devoted to the group and to each other.  For many of them, Tremble Clefs practices and performances are the high point of their week.

Having seen the positive impact Tremble Clefs has on our group, I can’t help but wish that everyone with PD had a Tremble Clefs group available to them.  That is a longer term goal I am working on, but that is complicated and will take time.

The Phoenix-area Tremble Clefs organization has to rely on donations and self-funding to pay for all expenses, including compensation for the director and accompanist.  Choir members pay a fee to participate and help with fund-raising activities. They create budgets, pay bills, and handle all financial administration.  It is something they are willing to do in order to keep the organization alive.  They would love to have this taken off their plate, but don’t know how to find a solution.

I have worked for corporations and business consulting firms in the past, and have some experience with nonprofit corporate sponsorships.  Most major corporations allocate funds for this purpose.  They look for relationships with organizations that will further their business goals by creating favorable brand recognition and enhance their brand image with their target customer base.

It seems to me that many corporations that provide products or services to the Parkinson community would have interest in supporting something like this, especially in the Phoenix market where there are so many PwPs.  This would include pharmaceutical companies, service providers, DBS companies, product manufacturers and more.  Without going into detail, this involves a relatively low annual expense and a great deal of visibility (advertising, signage, programs, shirts worn by members, events) due to the popularity of Tremble Clefs concerts in the Phoenix area and a positive image that has been created over a period of 10+ years.

I am going to publish this on my blog and share it with my network of PD advocates.  I would not ordinarily turn to social networking to pursue companies who may be interested in considering a sponsorship relationship with Tremble Clefs in Phoenix.  However, I have received many inquiries from these companies through my blog that are interested in having me publish information about their product or services, speak at meetings, provide feedback based on my knowledge of the PD world and more.  So I think there is a good chance that this article will be seen by companies that may have interest.

Any companies or organizations that would like to discuss this matter can contact me through my website at http://shakypawsgrampa.com/index.php/contact-kirk-hall.

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Kirk Hall

PD SELF: Summary by Diane Cook

Diane also agreed to provide a description of her self-efficacy education program for Parkinson's, PD Self.

 

PD SELF: Summary

Diane Cook

 

PD SELF is a nine-session program in which newly diagnosed Parkinson’s patients and their care partners meet monthly to learn how they can use self-efficacy to manage their Parkinson’s disease (PD) successfully. Based on Stanford psychologist Albert Bandura’s research on self-efficacy, the goal the program is to better participants’ lives, and possibly even change the trajectory of the disease.

 

A basic tenant of PD SELF is that every person’s experience of Parkinson’s is unique. Patients encounter different symptoms, emotional reactions, and physical challenges. Because of this, it is important that individuals approach Parkinson’s in a customized way. PD SELF was designed to help them do this.

 

Each month, a facilitation team made up of a health care practitioner and a Parkinson’s patient shares perspectives and guides the discussion to support and maximize learning. They introduce self-efficacy concepts and behaviors that are at the center of PD SELF in order to help participants shape how they manage their disease.

 

In addition, PD experts from a wide variety of fields and backgrounds present focus topics each month. Areas of exploration include Adapting to Parkinson’s Disease, Acquiring Self-Efficacy, Creating a Personal Health Care Network, Understanding PD Medications and Treatments, Benefiting from Exercise and Neuroplasticity, Understanding Cognition and Nonmotor Symptoms, Strengthening the Relationship Between Parkinson’s Patient and Care Partner, and Complementary and Alternative Medicine. A list of books, articles, videos, and webinars is also provided with each module so participants can explore further those areas that interest them most.

 

One of the most constructive skills PD SELF spotlights is goal setting. The My Goals/Learning exercises at the end of each module underscore the information participants have learned each month and encourage them to apply it in ways that are unique to their circumstances. In addition, PD SELF graduates can use the insights from these exercises going forward to build on the successes they experienced in class.

 

Beyond building self-efficacy skills, one of the greatest advantages from this program is the opportunity for Parkinson’s patients and their care partners to meet others facing this disease. Together, they can use PD SELF to learn from and support one another, expand their self-efficacy, and take charge of their Parkinson’s disease.

Results of a pilot of this program, launched in nine cities nationwide in 2016 by the Parkinson’s Disease Foundation, showed that participants’ anxiety, depression, fatigue, perceived support, and stress all improved. Psychosocial functioning continued to improve through the one-year follow-up, suggesting a change in behavioral patterns.

 

Here is what some of those participants had to say about how PD SELF enhanced their lives:

 

  • “I feel much more confident about the future.”
  • “These are tools I can use for the rest of my life.”
  • “I feel empowered!”
  • “I have become much stronger emotionally and physically.”
  • “We have choices. We have tools to fight against this disease. We can make a difference.”

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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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