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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

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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