Kirk's Blog

parkinsons best blogs badge
Healthline

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

National Caregivers Month

NFC Month jpg 2013

                          CAN no tm

 
 
 
 
 
 
                                                                                
 
This post is a reprint from October 2013:
 
This post includes information from the Caregiver Action Network* site, to which all those who benefit from the support of caregivers are indebted.  This important information is included on their website:
We in the Parkinson's world refer to caregivers as care partners in order to emphasize the joint involvement of patient and care partner.  We recognize that care partners come in a variety of "shapes and sizes", including women, men, family members, or friends  We also need to pay tribute to the important roles played by paid homecare, assisted living, or nursing home staff, many of whom are driven primarily by their desire to care for others.
 
I have written recommendations for PWPs and care partners in previous blog posts that include thoughts priorities for each group as well as how they can support each other.   Mutual support, communication, patience, teamwork, and love are hallmarks of a desirable PWP/care partner relationship.  I would emphasize the desirable part of that statement while recognizing that we are all human and that there are forces at work that can make this difficult on any given day.  The important thing, I think, is that when we "stray off course" to recognize the importance to both parties of returning to that mindset as soon as possible.  If we have times when that is difficult, it is important to be willing to reach out to resources like support groups, "umbrella" organizations (like Parkinson Association of the Rockies in our area), clergy, family, or friends.  We are not in this alone! In my case, I am extraordinarily fortunate to have the best caregiver I could ever hope for, my wife of 44 years, Linda.  As a former social worker, it is her nature to care for others and put their needs ahead of her own.  While we have our ups and downs (see the previous paragraph) like anyone else, we are blessed by mutual love, devotion, support of family and friends, and shared faith that serves as our "true north".  Importantly, we are also both involved in and committed to supporting our local support group in Highlands Ranch, Bionic Brigade (the Denver area DBS support group), Parkinson Association of the Rockies (PAR), a new care partner support group, and the Parkinson Disease Foundation (PDF) patient research advocacy program, as well as remaining involved in community support programs through our church. One of the ways Linda displays her patience is by allowing me to spend hours at my computer working on my writing, which currently includes this blog and finishing a new book titled Window of Opportunity: Living with the reality of Parkinson's and the threat of dementia**.  She did the same as I wrote my PD-related children's books***in 2011 and earlier this year (the new one focuses on the role of care partners as well as other PD issues).  We travelled together to the recent World Parkinson Congress in Montreal.
 
She demonstrates her commitment to my well-being by encouraging me to join her for walks, bike rides, or to work out at our local recreation center.  She is my golf partner, camping buddy, and travel companion (we have a trip to Shanghai planned to visit our son and family next March).  Since I only drive very short distances infrequently, she is also my chauffeur.  I would invite all my PWP friends to go out of their way in November (and in the months that follow) to find ways both subtle and overt to express our love and appreciation to those who are devoting their lives to us, often at the expense of their own interests.  Finally, we need to recognize that PWPs have a caregiver role to play by ensuring that our partner's wellness is not overlooked.  After all, where would we be without them?   
 
* The Caregiver Action Network is the nation’s leading family caregiver organization working to improve the                     quality of life for the more than 65 million Americans who care for loved ones with chronic conditions, disabilities,                     disease, or the frailties of old age.  CAN serves a broad spectrum of family caregivers ranging from the parents                      of children with special needs, to the families and friends of wounded soldiers; from a young couple dealing                      with a diagnosis of MS, to adult children caring for parents with Alzheimer’s disease. CAN (formerly the                      National Family Caregivers Association) is a non-profit organization providing education, peer support,                      and resources to family caregivers across the country free of charge. **Not yet released ***Kirk's children's books are books one and two in his "Shaky Paws Grampa" series titled Carson And His Shaky Paws Grampa (http://www.innovopublishing.com/innovo-store/digital-titles/product/190-carson-and-his-shaky-paws-grampa-by-kirk-hall-paperback-edition.html) and Carina And Her Care Partner Gramma (http://www.innovopublishing.com/innovo-store/digital-titles/product/343-carina-and-her-care-partner-gramma-by-kirk-hall-hardback.html).

Share this article:

Continue reading
182 Hits
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”.

Share this article:

Continue reading
252 Hits