Parkinson’s mind

Denver-based writer Kirk Hall collaborated with Paradise artist Alison Paolini to produce two children’s books to help kids understand Parkinson’s. “Carson And His Shaky Paws Grampa” and “Carina And Her Care Partner Gramma” help adults explain in a non-scary way what may be happening to loved ones.

And yet, as Hall recognizes, the progressive nature of the disease can be frightening indeed. As a “person with Parkinson’s,” he’s written a book that is part memoir and part guidance, honestly confronting his own fears and providing resources.

“Window Of Opportunity: Living With The Reality Of Parkinson’s And The Threat Of Dementia” (self-published through Smashwords; available for Amazon Kindle) wrestles with an aspect of Parkinson’s that is not often addressed. Diagnosed with the disease in 2008, Hall, a “high functioning” individual with a good but stressful job in the corporate world, had to deal not only with tremors but with “cognitive issues.” 

He recounts times when it was hard to understand what people were saying and times of memory lapses. He and his wife Linda got mixed messages from the array of doctors they consulted, and that added to Hall’s fear. Was his brain scan normal, or not? Were times of “slow thinking” just part of being in your mid-sixties, or is there a neurological disorder?

He wanted to find out as much as possible about the cognitive effects of Parkinson’s. “I remember thinking that God may have provided me a ‘window of opportunity’ and I wanted to make the most of it if that was the case.”

Chapters deal with stress, faith, cognitive impairment, deep brain stimulation, resources, and more.

A breakthrough came when he became a patient of Dr. Benzi Kluger, Associate Professor of Neurology and Psychiatry and Director of the Movement Disorders Center at the University of Colorado in Denver (who provides the book’s foreword). Dr. Kluger focused on the question of Parkinson’s-related dementia, and Hall found a measure of hope in adding Namenda to his medications, which improved his “mood and working memory” so that he was able to complete the book.

The book is an invaluable gift to those with Parkinson’s.

Helping kids understand Parkinson's

Paradise artist Alison Paolini, a member of the Parkinson's Association of Northern California, has teamed with Denver-based writer Kirk Hall to tell about his life as a PWP ("person with Parkinson's") from a child's perspective. The "grampa" of his earlier book, "Carson And His Shaky Paws Grampa" (also illustrated by Paolini), Hall's new story focuses on his wife, Linda, the caregiver, and is more explicitly about Parkinson's Disease.

"Carina And Her Care Partner Gramma" ($15.95 in paperback from Innovo Publishing, in Amazon Kindle format and available from Hall's website at shakypawsgrampa.blogspot.com) situates Parkinson's within a family context. As Hall says in a "note to readers," the book "emphasizes the importance of care partners. Care partners are most often women (since the majority of PWPs are men), but there are also women, family members, or friends in this difficult and demanding role."

"My name is Carina," the story begins, "and I am six and one-half years old." She and her younger brother have moved to China with their parents, who are teachers. She fondly remembers her grandparents, especially Gramma. "The summer before we moved to China, the whole family went to a park to walk with Gramma and Grampa and a bunch of other people. Some walked very slowly, some were in special chairs with wheels, and some were shaky like Grampa used to be. We walked a really long way to help raise money for something called Parkinson's. Gramma told us that is what caused Grampa's 'shaky paws' and make him tired."

Carina says her grandparents speak to others about Parkinson's, and her Gramma tells how she helps Grampa. "Like telling him to take a nap when he gets grouchy or taking a long walk with him. They told them about his special procedure and how much better he feels."

That procedure, Hall explains in a note, is called "deep-brain stimulation therapy," "a pacemaker for the brain," which he had in 2011. The book also includes a resource page for care partners and those with Parkinson's. Paolini's large, colorful illustrations are friendly and inviting.

"I would like to be a doctor," Corina tells her teacher, "so I can take care of people like how Gramma takes care of Grampa. ... I know she will do a good job because she loves him so much!"