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

A New Challenge

I was contacted a few weeks ago through my ShakyPawsGrampa.com website by Health Union (www.health-union.com), a company that exists for the purpose of “inspiring people to live better with specific health conditions”.  They describe what they do as follows:

Our approach combines new, original content published every day with digital, social and mobile technologies to cultivate active, engaged online communities. Our platforms are unique ecosystems dedicated to illuminating the voices and experiences of people with migraine, multiple sclerosis, rheumatoid arthritis, hepatitis C, type 2 diabetes, COPD, Crohn’s disease, asthma, irritable bowel syndrome, plaque psoriasis, psoriatic arthritis, and lung cancer. Our services and solutions foster open and honest interactions about these health conditions between and among patients, caregivers, professionals, providers and industry partners to help all stakeholders make more informed decisions about healthcare.”

They expressed interest in talking with me about working with them in conjunction with their Parkinson’s website that is currently in development for introduction in the near future.  They had spent time on my website and thought my PD advocacy experience would make me a good fit for them.

After reading about their patient-centric focus, their existing websites, comments by management, and internet reviews, I began to think that this might be something I would like to do.  Frankly, while my knowledge has increased in different ways over the last few years, some of my advocacy skills have diminished.  For example, my ability to make presentations has deteriorated due to voice and memory problems as well as processing of verbal information that are amplified under any type of stress.

I was offered a role as “moderator” that would require me to respond to questions through their website from patients, caregivers, and other interested parties.  The hours will be limited and flexible, which is good.  The clincher was that it would enable me to provide feedback to PD folks that would have the potential to make their lives better (something I have done many times over the years with groups on one on one).  Also, this is feasible because I would interact in writing to written material without time pressure.

I did touch base with Benzi Kluger about any potential conflict with our current PD Palliative Care clinical research study.  He said it would not be a problem and that PCORI (the Patient Centered Outcome Research Institute funding the study) would likely see it as a positive.

I will receive training starting in April designed to prepare me to work within their system and meet their expectations.  Kickoff for the new site is TBD.  I am looking forward to this new challenge.

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Kirk Hall

World Parkinson's Day

World Parkinson’s Disease Day

Tuesday, April 11, 2017

I was contacted a couple weeks ago by my friends at the European Parkinson Disease Association (EPDA).  They asked if I would help publicize the upcoming World Parkinson Disease which they support.  Of course, I told them I would be happy to mention this important event on my PD facebook page and blog.

The information below is from the DaysoftheYear.com website: https://www.daysoftheyear.com/days/world-parkinsons-disease-day/

World Parkinson’s Disease Day marks the birthday of Dr. J Parkinson. On this day there are efforts made to increase the public awareness of this terrible disease, as well as all the good works put forth by the worlds organizations dedicated to eradicating this disease. There are activities to promote this the entire world over, and the opportunity to participate is open to any and all who want to help in this effort.

One of the popular ways of supporting the awareness of this disease is participating in marathons in cities throughout the world. The number of countries that are participating in this expand every year, including Uruguay, Mexico, Bolivia, Fulvio Captinio, the USA, and an increasing number with every passing year.

Dr. Parkinson first described the disease in “An Essay on the Shaking Palsy”, he described a pattern of lessened muscular power, involuntary tremulous motion, even if these are supported. There is at tendency to bend the body forwards, and to involuntarily switch from a walking to a running pace, while the sense and intellect deteriorate.

One of the prominent symbols of Parkinson’s disease is the red tulip, and this was established at the 9th World Parkinson’s disease Day at the Luxembourg Conference. The story of the Red Tulip can be tied back to J.W.S. Van der Wereld, a Dutch Horticulturalist who was suffering from Parkinson’s disease. He had successfully generated a Red and White Tulip, and named it in honor of the man who named his medical condition. On the tail of this, the Tulip received the Award of Merit, granted by the Royal Horticultural Society in London, and then was granted the Royal General Bulb Growers, Trial Garden Award.
Many people do not understand what Parkinson’s is, or are unaware of how to identify it. In the interest of promoting awareness of this disease, a simplified description follows. It is a disorder that results in the degeneration of the central nervous system, and directly impacts those that nerves that handle motor functions for the body as a whole. As the disease advances, it becomes apparent from the slowness of their body, and the increasing stiffness of their limbs that there is a developing problem. Their limbs will begin to shake uncontrollably as it gets further on, and eventually an entire scope of additional symptoms will develop as more and more motor functions are impacted. Sufferers are often tired, and memory problems become more apparent as time goes on.

What can you do to help out on this important day? As mentioned above there are numerous marathons and walk-a-thons that take place to help generate donations to support the ongoing research into this condition. You can work together with your friends and family to help organize refreshment stands or bake sales to produce more funds to donate to research groups.

You can also organize larger events at your local parks, or even with your local schools. You could work together with them to create a day where there are educational courses about the disease, and musical performances to generate money for donations. Whatever you do, remember that this day is dedicated to an open awareness of this disease, and to help support those groups and organizations that are intent on eradicating or controlling this illness. So on World Parkinson’s Disease Day, make sure you talk to those in your life about it, and encourage them to join the fight!

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