In spite of popular demand, a new website for which you have all been waiting (or not) is under construction as we speak for Shaky Paws Grampa (aka me). You might well ask, what in the world makes you think there would be interest in such a thing? A legitimate question, the response to which was written by my crack PR department (once again, me):
Patient-Perspective Parkinson’s
Resources
Kirk began
speaking at PD support group meetings and events in 2011 after writing his
first children’s book, often following presentations by PD doctors. He noticed that the patients’ and their care
partners’ interest level actually increased in many cases, not because what the
doctors shared was uninteresting or unimportant, but because information was
being shared by “one of their own” who could directly identify with much of
what they were experiencing. This was a
new “voice” that they were not used to hearing.
In the years that followed, the value of patient input, perspective,
focus and participation has become a central theme in the development of
enhanced treatments and research.
Parkinson’s
resources are anything that has the potential to improve quality of life for
people with PD (PWPs) and their care partners. Resources on this website will
include:
- Kirk’s books
- Kirk’s blog
- Kirk’s advocacy
Ø
PDF/PAIR
Ø
DBS
Ø
Media
interviews
- · Kirk’s recommended resources
Ø
Top
10 recommendations for PWPs and Care Partners
Ø
PD
education websites
Ø
PD
information websites (Denver area PD events/research updates)
Ø
Alzheimer’s
& Lewy body dementia information websites
Ø
Recommended
reading list
Ø
Recommended
PD blogs
Ø
Recommended
dementia blogs
About the SPG logo
The
rainbow became a central theme for Kirk during the latter stages of writing his
Window of Opportunity book based on
his desire to communicate that his quality of life remains very good despite
the significant potential that he will develop dementia. He wants to be clear that he has much for
which to be grateful, not least of which is the positive energy and caring he
experiences whenever he interacts with the PD community. The central themes that have lead Kirk to
this point and that continue to be important for him are hope, faith, and love.
Here is a preview of the blog page:
Blog
World Parkinson Congress
2013 in Montreal
Kirk’s blog can be found at shakypawsgrampa.blogspot.com.
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
Here is a chronological listing of articles broken down by category
(click on title to view blog article).
Bolded titles are those Kirk recommends in particular for PWPs and care
partners:
Book or writing-related:
- How "Carson And His Shaky Paws Grampa" was "born"
- How "Carson And His Shaky Paws Grampa" was "born" (cont.)
- About Carson
- Writing a Memoir
- Carina And Her Care Partner Gramma
- CARINA BOOK
- Carina and Her Care Partner Gramma Press Release
- CARINA AND HER CARE PARTNER GRAMMA: Note to Readers
- Carson And His Shaky Paws Grampa book review
- New Book Release: WINDOW OF OPPORTUNITY
- WINDOW OF OPPORTUNITY UPDATE
- Window of Opportunity book now available
- The Story Behind The Writing Of "Window Of Opportunity"
- Keeping a Journal
- Window of Opportunity excerpt
- Update on the response to Window of Opportunity
- Exercise and PD
- Information Regarding Essential Tremor
- Deep Brain Stimulation
- Fatigue and Parkinson's Disease
- Parkinson's and Stress
- Shaky Paws Top 10 Recommendations for PWP's
- Shaky Paws Top 10 Recommendations for Care Partners
- Parkinson's Programs for the Artistically Inclined
- Driving and Parkinson's: Balancing Independence With Safety
- Focused Ultrasound Technology: An important development
- PALLIATIVE CARE AND NEUROLOGY: Time for a Paradigm Shift
- PARKINSON EXERCISE ESSENTIALS: A New Program from the Davis Phinney Foundation
- A Tribute to Care Partners
- Parkinson's Resource List Update
- PRACTICAL IDEAS FOR DAILY LIVING WITH PARKINSON'S
- How Doctors Choose To Die
- PDF Learning Institute Invitation
- Clinical Research Trials: A Critical Opportunity For All PWP's
- Brain Donation
- DENVER CLINICAL RESEARCH FORUM
- Clinical Research Forum Announcement
- PATIENT-CENTERED RESEARCH INITIATIVES
- Parkinson's and Dementia
- The Elephant in the Room: My Story
- The Elephant in the Room: Choices
- The Elephant In The Room: Snapshot
- An Underaddressed Problem
- Notes from the Twilight Zone
- Notes from the Twilight Zone: Mountain Climbing
- Notes From The Twilight Zone: Dementia--A difficult but important subject
- Notes from the Twilight Zone: I am not alone
- NOTES FROM THE TWILIGHT ZONE: Some Times You Feel Like A Nut
- Having Parkinson's Isn't All Bad
- Grampa Music
- Living In The Moment
- The Rest of the Story
- New Beginnings
- Angel's Wings
- Making Memories
- Go For It
- Angel's Wings II
- Go For It 2
- World Parkinson Congress Highlights
- Parkinson's Disease Global Community Conference
- Parkinson's Global Community Conference
- UPCOMING PD EVENTS IN THE DENVER AREA
- Carson & His Shaky Paws Grampa Press Release
- KOA Radio Interview
- Shaky Paws Newspaper Interviews and Book Reviews
- Shaky Paws Grampa was featured in the Denver Post!
- Shaky Paws TV feature and interview
- Presentation at PAR Triumph Breakfast
- Shaky Paws On YouTube
- National Family Caregivers Month Interview
- LBDA WEBINAR: Living with LBD: The Firsthand Perspective
- Parkinson's Article In The Denver Post
- April Is Parkinson's Awareness Month!
- 18th Annual Parkinson’s Unity Walk
- 2012 PAR Vitality Walk012 PAR Vitality Walk
- 2013 Parkinson Vitality Walk
- April is Parkinson's Awareness Month
- Parkinson Association of the Rockies Vitality Walk
- Are You A Parkinson's Warrior?
- Vote For Parkinson Association of the Rockies!
No comments:
Post a Comment