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

2016 Presidential Election: It is finally over

 I have some thoughts I would like to share about the election and related issues. I am going to take a “stream of consciousness” approach so these comments will not be in any particular order. One of the comments is specifically relevant to the PD community, so I will do that one first.

  • Everyone in the PD world owes President Obama a debt of gratitude for two specific programs has initiated during his Presidency. The first is the Patient Centered Outcome Research Institute (PCORI), a government agency that awards grants for patient-centered research. This program recognizes the importance of the “patient voice” in the planning, conducting, and evaluation of research to help ensure that the outcomes make a difference in our lives. That is very important in terms of the ultimate value of the research, but also because it gives patients the opportunity to be actively involved in research for our benefit. This is very much appreciated!

The second is the President’s BRAIN initiative conducted by the National Institutes of Health (NIH) in Bethesda. The additional research funded by this program will hopefully accelerate progress related to a wide range of brain disorders, including Alzheimer’s, PD, MS, ALS and much more, as well as increasing our knowledge about how the brain works.

  • I think all of us are glad that the election is FINALLY over. While it is extremely important to the future of our country, it is an agonizing process due to the amount of time it takes, the negative advertising, and the amount of vitriol spewed by the candidates on each other, slanted media coverage, and an obvious willingness to “share inaccurate information” (prevarication).
  • While all of this is discouraging since it seems so contrary to the ultimate goal of the process, the most disheartening aspect of elections and politics in general is how “we the people” treat each other. The level of divisiveness and hostility towards those who do not share the same point of view is unprecedented. It seems that when politics are on the table, civil/polite behavior is parked at the door like in a traditional Japanese home. We stop even trying to treat others the way we want to be treated. I would suggest that social media is at least partly responsible for creating a “herd mentality” that produces a predisposition for “inconsiderate communication” (the #1 enemy of civil discourse between any two people or groups of people). Of course we will never agree on everything nor should we want that. We need to be able to RESPECTFULLY disagree and be willing to LISTEN to what others have to say and ACTIVELY consider the merits of what is being said. Which one of us can truly say that we have all the answers? Let that person be the first to cast a stone.
  • I will freely admit that I am pleased with the outcome of the election. I agree with those who say that “politics as usual” is not working. We have been in a self-perpetuating state of gridlock for too long. We now have an outsider who is not perfect nor does he have all the answers. However, he has stated a willingness to listen to the “best and brightest” in order to find solutions for the many problems facing ALL of our citizens. The foundation for my optimism is based on my experience in the business world, where understanding what is needed to fix problems is only the first step. We must then develop and implement plans that will produce LONG TERM solutions (not just quick, temporary fixes), employing individuals with the appropriate skill sets needed to achieve results quickly and efficiently and holding them accountable. The fact that he will have a generally supportive congress working with him significantly increases my optimism that changes will, in fact, begin to happen.

Though it is very early in the game, I very much liked the tone of what I heard in the initial comments from Clinton, Trump and President Obama. The first steps were positive, cooperative, and conciliatory. I will be praying that where we go from here will be good for the country and all it’s people.

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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).

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