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

Tremble Clefs: A life-changer for PwPs

 

 

Tremble Clefs (http://www.pdf.org/en/media_news/release/pr_1311104858) is a program for PwPs and their care partners that combines voice/speech therapy with the joy of singing. I have been singing with the Phoenix chapter for the last two months and am amazed by the enthusiasm and strong sense of community in the group, as well as the stories about how this experience has changed people’s lives. One gentleman who was diagnosed 20+ years ago described how he had totally lost his ability to speak due to PD. Now he is singing with the group and even doing solos (with the aid of a microphone).

This is just one of the success stories I have heard from the 40+ members of the group that rehearses every Wednesday. When asked why Tremble Clefs is helping them so much, the unanimous response is that it is due to the extraordinary commitment of their leader, Sun Joo Lee. Sun Joo has been leading two groups in the Phoenix area for nine years utilizing her speech/voice therapy education. The love between Sun Joo and the group is palpable.

Each rehearsal starts with stretching of neck and shoulder muscles as well as exercises to increase flexibility in the face, throat, and vocal chords. These exercises involve a variety of movements that also have cognitive benefits. After a series of vocal warm ups, the group rehearses a variety of songs that have been selected for scheduled performances. They are mostly familiar tunes that are well known with a focus on melody only. Individuals are given opportunities to do solos or duets which are more challenging. The concert audiences are extremely appreciative and clearly are moved by the stories and the open sharing of the difference tremble clefs has made in their lives.

For my part, I have experienced significant improvement in my speaking voice as well as some improvement in my singing. I have enjoyed the experience, which I wasn’t sure I would be able to do. I still miss my “old singing voice” and the doors it opened, but I am gradually learning to enjoy what I have today while keeping the memories.

I care a great deal about the well-being of my PD brothers and sisters. I wish that all of them would have the opportunity I have had here in Phoenix. Unfortunately, this program is not available everywhere, but it could be. It is no small task to get a Tremble Clefs program up and running. It takes time, commitment, communication, and funding. That said, the return on investment is breath-taking (no pun intended).

For information on how to start a Tremble Clefs group in your area, visit http://www.trembleclefs.com/start-a-chorus.html.

Share this article:

Continue reading
128 Hits
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.

Share this article:

Continue reading
161 Hits