Tuesday, April 16, 2013

Carina And Her Care Partner Gramma


Book Two in the Shaky Paws series, Carina And Her Care Partner Gramma, will be released in the near future.  Once again, it will feature illustrations by Alison Paolini.

The first book, Carson And His Shaky Paws Grampa, was designed to be a “conversation starter” for adults to use with children for discussion regarding serious illness.  There were general references to Parkinson’s (PD) symptoms and the deep brain stimulation therapy that I had to “fix” my tremor.  The non-specific dialog was intentional so that the book might be helpful relative to a variety of different illnesses.  Two additional Shaky Paws books are planned.

Carina And Her Care Partner Gramma was written to address PD specifically and to provide a communication tool for Persons With Parkinson’s (PWP’s) to use with their children or grandchildren.  This book provides much more detail specific to PD symptoms and mentions important issues in the “PD world”, including deep brain stimulation therapy, the importance of exercise, and the need for patient participation in clinical research studies. 

This book also emphasizes the importance of care partners.  Care partners are most often women (since the majority of PWP’s are men), but there are also men, family members or friends in this difficult and demanding role.  We tend to focus on the challenges faced by PWP’s, which is understandable.  However, PWP’s owe a huge debt of gratitude to these dedicated individuals who do so much with, in many cases, far too little recognition or expression of appreciation.  Further, it is important that resources be devoted not only to education of care partners, but also to counseling and other support strategies to protect their wellness.

Carina, whose middle name is Marie (the same as Linda’s mother, Ruth) and my wife have had a special relationship from the start.  Shortly after she was born, we both noticed how much she seemed to resemble Ruth.  We also realized that Carina’s parents were with us when we visited Ruth in the hospital shortly before she died nine months before Carina was born.  As she grew older, it was clear that Carina and Ruth share some common characteristics.  It is comforting to think that Ruth’s spirit lives on, somehow, through Carina.

The events and communication described in this book are depicted, for the most part, the way they actually occurred.  I am sure Carina has not retained all the detail described (she is only six years old), which raises the point I made in the first book. As parents and grandparents, you know your children and grandchildren best, and are best equipped to decide what to tell them in these situations.  Linda and my strategies for communicating with our grandchildren continues to be adjusted based on our perception of each child’s level of maturity and readiness to have this kind of information shared with them.

I have, once again, included a page that addresses our faith, which continues to be a great source of support, hope and comfort for us.http://www.innovopublishing.com/innovo-store/digital-titles/product/343-carina-and-her-care-partner-gramma-by-kirk-hall-hardback.html


Clinical Research in Colorado - It's Not Too Late to Register
When: Saturday, April 20 | 8:30am - 1:15pm
Where: Mile Hi Church, 9077 W. Alameda Ave., Lakewood, CO 80226
To register please visit bit.ly/coloradoclinicalresearch or call (303) 830-1839
Forum attendees will explore the inroads being made in Colorado towards new treatments and therapies that may redefine care for Parkinson's disease. By attending the Clinical Research Forum: Parkinson's Research in Colorado, you will have the opportunity to learn more about available clinical trials for various modalities of treatment including medications, alternative therapies and surgical treatments.

Learn how you, as a clinical trial participant, are protected. Join the open discussions with trial participants and family members about how they decided to participate in clinical trials. Learn how to register for the Fox Trial Finder through a representative from the Michael J. Fox Foundation. Talk with the research coordinators one-on-one to learn more about the available opportunities to join the initiative towards better treatments and the eventual cure for Parkinson's disease.