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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

Parkinson’s Advocates Needed!

 

Lindas pictures 2-21-12 172 2

 

I never had a plan to become an advocate.  A couple years after I was diagnosed in early 2008, I realized I was spending too much time worrying about myself and what the future would hold for my wife and me.  Actually, I had been thinking and praying about this when the doorbell rang.  It was a friend from our church dropping off a “prayer blanket” to provide comfort in my “time of need”.  I was blown away by this thoughtful gift as well as the timing.  There are many examples of this sort of thing happening in my life that might be thought of as coincidental.  I believe otherwise.

The first thing I did was sit down with that blanket and give thanks to God.  Then I prayed for everyone who had been supporting me and Linda, as well as those I knew of who were in need themselves.  I resolved to “give back” by spending more time thinking about, praying for, and trying to help others in any way I could.

Since I had been spending so much time learning about PD to try to help myself, I realized I was in a position to share that information with others.  Since then it has occurred to me that so much of what I had done in my business career had prepared me for the work I now chose to undertake.  Another non-coincidence (ANC).  Although I had never written anything but letters, school papers, strategic plans, and business reports, I was inspired to write a children’s book for my grandchildren based on an exchange with them about my “hands shaking”.  Since I was unprepared for this, I said “Grampa just has shaky paws”.  There were four of them, ages 3-7 at the time.  They seemed satisfied with this answer.  I wrote the book, Carson and His Shaky Paws Grampa as a gift to them.  A shared it with a neighbor who is a retired elementary school librarian (ANC) on a whim.  I was surprised when she told me it would make a great picture book and that there was a need for books that could be used to help parents and grandparents communicate with children regarding serious illness.  Without knowing what I was doing, I made connections with an illustrator who was also a PwP (ANC) and found a publisher who made me an offer!  The last part of the book had to do with the impact that DBS surgery (this happened between starting and finishing the book) had on me (no more shaky paws!) and my relationship with my oldest grandson (ANC).

This innocent little book led to speaking opportunities with support groups that allowed me to share what I had learned about PD and my DBS experience.  They had never had “one of their own” do a presentation for them and it was clear that they found it interesting on a different level than presentations by medical practitioners.  After doing more of these in the Denver area, I was asked by the DBS manufacturer (Medtronic) to do presentations in Phoenix.  This led to an interview about the book and PD with Fox News there.  This led to a keynote speech for the Parkinson Association of the Rockies, more interviews, lots more presentations and a second children’s book.

I had experienced cognition issues that started soon after my diagnosis.  Around the time I decided to shift my focus to “giving back”, I started thinking about writing a book about my journey with PD-related cognitive problems with the hope that this might help others dealing with this problem.  This topic became a significant focus for my support group presentations, where I learned that this was the predominant concern for many PwPs and care partners.  I was diagnosed with mild cognitive impairment in 2011, not long after my DBS surgery.  I finished the book (Window of Opportunity: Living with the reality of Parkinson’s and the threat of dementia) early in 2014.

Around the same time, my doctor (Benzi Kluger) spoke with me about working together on a clinical research study that would address a topic of mutual interest, PD palliative care.  Later that year, PCORI (Patient Centered Outcome Research Insititute) approved a $1.5 million grant for a 3-year, 3-site study headed by Dr. Kluger.  He asked me to be a stakeholder and form a patient/caregiver advisory council that actively participate in all aspects of the study.  PDF chose to throw their support behind this topic and awarded funds to make possible the first International PD Palliative Care Conference in Denver in October 2015.  Dr. Kluger and I were asked to make a presentation on the research study at PCORI’s first annual meeting in Washington, D.C. later that month, and on the topic of PD palliative care at the World Parkinson Congress held in Portland, OR a few weeks ago.

When I look back on all this, it seems surreal.  It is clear to me that these opportunities and the way they came about are evidence of God’s Grace.  Now I am hearing His voice telling me it is time for me to begin to think about where we go from here.  I don’t know when my “shelf life” will run out, but I know I am on the downhill side of my advocacy experience.  I have had the honor of getting to know and work with many advocates from the Denver area, different parts of the U.S., and all over the world.  They have made and will continue to make a fantastic contribution.  The question I am asking now is are there things we can be doing to ensure that individuals who have the potential to be advocates in the future are recognized and developed?  In our brave, new “patient-centered” world, there are going to be more opportunities than ever before.

Some will develop “organically” as I did.  But I think the time has come to be more proactive and intentional about “keeping the pipeline filled” with people who have the passion and capability to do this work.  Some thoughts along these lines:

  • Local support group leaders should be on the lookout for PwPs/care partners who display passion, energy, and a willingness to be involved.Perhaps their names could be given to regional support organizations (like Parkinson Association of the Rockies in the Denver area) for follow up.
  • A task force that includes selected patients, caregivers, support group leaders, regional support leaders, and national PD organization representatives should be created to address this issue and to create a development strategy.In the case of filling specific key roles, this can be thought of as succession planning.
  • This type of activity would be greatly facilitated if we had regional support organizations that could implement a unified, coordinated, consistent approach in all areas of the U.S.Currently there are three different, competing “umbrella” organizations providing guidance and support for these regional groups that only cover part of the U.S., including NPF, APDA, and AIRPO (independents) supported by PDF.A single national-level “umbrella” organization is needed to support this type of activity, roll our PDSelf, make possible sharing of best practices, and more.We are seeing movement in this direction with the FOX/PAN and NPF/PDF mergers.

In the meantime, anyone who reads this and is interested in becoming an advocate should talk with their support group leader, their regional support organization director, or other advocates in their area.  There are many different kinds of roles available.  Another avenue to pursue is to go online at http://www.pdf.org/pair to learn about the PDF Parkinson Advocates in Research program (Linda and I are members).  Advocacy is a great, and personally fulfilling, way to make a difference in the lives of your PD “brothers and sisters”.

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Kirk Hall

Notes from World Parkinson Congress 2016

 

 

WPC blogger partner

 

Linda and I returned last Saturday from a week in Portland for the second International PD Palliative Care Conference and the World Parkinson Congress.  I will share some of the highlights from the week for those who couldn’t be there as well as some related thoughts.

We started the week at the PC Conference at OHSU hosted by Julie Carter, one of three recipients of the World Parkinson Congress Award for Distinguished Contribution to the Parkinson Community.  Attendees included doctors, researchers, and patients from the U.S., Canada, Australia, England, and Ireland who attended the first conference held last October in Denver and other individuals interested in helping advance this cause.  Work that had been done subsequent to last year’s conference was reviewed and additional projects were identified for action.  Growing interest in this topic is evident on a number of fronts, including the inclusion of a PD Palliative Care workshop (From diagnosis to death: What palliative care can offer patients and care partners) and roundtable (Palliative care treatment options: what works best from the health professional and patient perspectives) in the WPC program.

Each of the four days at WPC provided options targeted to newly diagnosed patients and caregivers, experienced patients and caregivers with advanced interests, and the medical/research community.  The first day offered educational courses for each group.  The opening ceremony took place Tuesday evening featuring a performance by the WPC choir, announcement of the video award winner, and presentations by Brian Grant (former NBA player with PD) and Muhammad Ali’s daughter, May May Ali. Each of the remaining three days began with a discussion of hot topics and an in-depth plenary session on a particular topic.  During the afternoons, a menu of workshops and roundtables were available, each targeted to one of the three groups mentioned.

I participated with the WPC choir, directed by Judi Spencer, in singing at the opening ceremony. The song was a very moving original composition by a choir member called A World Without Parkinson’s.  I enjoyed being part of this experience for a number of reasons.  Singing, a big part of my life in the past, is something I had given up due to voice changes caused by PD.  I decided to give it another try last spring in AZ with a Tremble Clefs group led by Sunjoo Lee.  Her encouragement helped me reconnect with my passion for singing, even though my voice is not the same.  Also, there is a special, palpable connection I experience being a part of the PD community at an event like this.

The topic of the first session we attended, a team-based approach to care for PD patients, was the one I found most exciting.  Like the approach being advocated for PD palliative care, it involves participation by a team of specialists that utilize complementary expertise to provide comprehensive care for both the patient and caregiver.  I also found sessions on cognition and dementia personally interesting.  Even those that were “above my pay grade” were sufficiently intelligible for me to appreciate.  Linda chose sessions on stem and IPS cells, the role of the gut in PD, nutrition, and the autonomic nervous system including speech and swallowing. 

The highlights for me were being included on the PD palliative care workshop panel (co-hosted by Julie Carter and Ruth Hagestuen) with Benzi Kluger and Indu Subramanian and co-hosting (with Julie Carter) a roundtable on the same subject.  My role on the panel was to speak about patient-perspective on PD palliative care based on a paper I had co-written. My presentation skills have deteriorated (based on speech and cognition problems) to a point that I was quite worried about my ability to pull this off.  At the same time, I was enormously honored and excited to have this opportunity.  Accordingly, I spent a great deal of time preparing slides and a script to read (bullet points that I have used in the past no longer work for me).  Thanks to the patience and assistance in proofing and rehearsing by my wife, Linda, and a healthy dose of the Grace of God, I am happy to report that I seemed to do a respectable job.

The roundtable was attended mostly by caregivers and one patient as I recall.  After a brief overview, the group was asked what they wanted to talk about.  Questions and comments quickly focused on issues related to insurance coverage and how this service would be paid for (a subject that was also raised following the workshop).  While I agree that this is a relevant issue that needs to be resolved, it is by no means the central issue (especially from a patient perspective).  I asked them to think about what PD palliative care was meant to accomplish and what was at stake, which is to create a vision/plan for late stage that would meet the needs and wants of patients, caregivers, and families.  Once again, it seemed that our mission was accomplished.

The next WPC will be held in 2016 in Kyoto, Japan.  While in the consumer electronics industry during the 80’s and 90’s, I visited this city a number of times.  It was a great place for shopping as well as visiting temples and shrines.  I also recall visiting the Shogun’s Castle, the nexus of power in Japan for over 200 years.  It is a much more relaxing place to spend time than Tokyo or Osaka. 

 

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