Shake, Rattle and Roll

Say That Again

Book: Say That Again  by Jane M. Cullen

Reviewed by: Kate Kelsall                               

                                                               

                                                                    Photo of Jane M. Cullen

The book, Say That Again, caught my attention.  The book’s author, Jane M. Cullen, tells a fiction story set in London about a 62 year old man, Benedict Marshall, a prominent playwright, who experiences two events in one week that change his life dramatically: being diagnosed with Parkinson’s Disease (PD) and meeting a much younger woman, who is struggling to make a living in her chosen career of acting.   

Early in their relationship, she makes the decision to call him “Mr. Marshall,” and decides that she should be called “Nell.” Initially, they keep their distance and are cautious.

Nell’s role in their relationship seems to be that of a cheerleader, encouraging Mr. Marshall to be all that he can be. For example, she encourages him to learn dancing to combat PD, but he is reluctant and self-conscious. They share their anxieties and worries with each other, as well as have a lot of laughter, playfulness and fun together.

Personally, I am very knowledgeable about PD after living with it for 21 years. Although the author does not have PD herself, her knowledge and understanding of PD is impressive.The general public sees PD primarily in terms of the tremor being the main symptom. Cullen has been able to incorporate some of PD’s non-motor symptoms (depression, anxiety, fatigue, drooling, lack of facial expression, cognitive problems, speech and voice problems) into Mr. Marshall’s character. In this way, she increases awareness about PD in her readers.

Although the subject of PD is a serious one, there are some very funny moments in the book where I laughed and touching moments when I cried. The person with PD is multi-faceted, and there is more to the person than only PD.

I am appreciative that Cullen describes the realities of living with PD with a sense of hope and inspiration.

For more information about Jane M. Cullen and her book, "Say That Again" check out the following:

Website: http://www.janemcullen.com/the-book/

Email:  [email protected]

 

 

 

 

 

 

 

 

 

 

 

 

Window of Opportunity

Review of Book: Window of Opportunity: Living with the Reality of Parkinson’s and the Threat of Dementia

Author: Kirk Hall      

Reviewed by: Kate Kelsall, Co-Founder and President of DBS Voices of the Rockies, Co-Founder and Co-Leader of the Bionic Brigade DBS Support Group, Blogger of Shake, Rattle and Roll

Initially I was apprehensive about reading the book, Window of Opportunity: Living with the Reality of Parkinson’s and the Threat of Dementia by Kirk Hall. I was afraid that the book was going to focus on the uncertainty and threat of dementia that sometimes accompanies Parkinson’s. I was delighted to see that there is no gloom and doom in this book.

Kirk was courageous to tackle these sensitive topics. When he expressed his fears, it helped us to articulate and accept our own concerns and worries. We are no longer alone on this treacherous path.

Kirk’s writing style is personal and honest like a memoir, and also filled with factual information and stories about Parkinson’s and dementia. He is determined to erase the stigmas of these two diseases in our society.

Kirk demonstrates that we can have a meaningful, purposeful life, despite Parkinson’s, dementia or whatever maladies come our way. His book was inspirational and motivated me to move upward and onward. I highly recommend it.

Available at amazon.com and and pygmybooks.com

The Brain-Behavior Connection in Parkinson’s

By Kate Kelsall

When I was diagnosed with Parkinson’s Disease (PD) in 1996, I quickly became familiar with the physical challenges of PD: tremors, slowness, stiffness, and postural imbalance. Had I known then about the non-motor or behavioral symptoms that frequently accompany this condition, I might have felt overwhelmed. But during the past 17 years in my journey with PD, I am no longer afraid of the good, the bad, and the ugly of PD. I have come to realize the benefits from examining all aspects of PD, I’ve learned that knowledge is power, and I’ve been able to be proactive in taking charge of and managing my PD.

Making the Connection Between Brain and Behavior: Coping with Parkinson’s Disease, Second Edition, (Demos Health, released August 13, 2013) by Joseph H. Friedman, MD is the only book that focuses entirely on an often overlooked area, the behavioral aspects of PD, including depression, anxiety, apathy, fatigue, hallucinations, delusions, confusion and delirium, disrupted sleep and compulsive behavior. Managing the behavioral aspects of PD has a huge impact on the quality of life of the patients and their families, and the good news is that many of these symptoms are treatable.

Dr. Friedman really “gets it” when describing PD-related behavioral issues. He illustrates his book with patient vignettes and excerpts from patient interviews where he digs deeper until he fully understands his patients’ experiences. His conversational style of writing and easy-to-understand language, allows his readers to benefit from his knowledge.

Tidbits of Dr. Friedman’s wisdom include the following:

About PD and Sleep Disorders: “In a nutshell, people with PD have difficulty getting comfortable in order to fall asleep. They frequently have pain. They can’t turn over. The tremor keeps them awake. They can’t get their head to lie comfortably on the pillow. They’re anxious and stay awake worrying about all sorts of things, whether they are worth worrying about or not. Then once they are asleep they awaken because their bladder is hyperactive. The tremor wakes them up. They napped for two hours during the day so they don’t need much sleep at night.” (p. 52-53)

About PD and Anxiety: “In some patients the anxiety develops only during “off” periods, that is, when the PD medications stop working and the patient loses mobility. Many patients, despite suffering through these episodes thousands of times, still feel as if they’re never going to snap out of it and become extremely anxious whenever their medications stop working.” (p. 68)

This book also has information on PD medications and the side effects that can lead to behavioral problems. Each chapter focuses on one specific issue which allows the reader to choose only the chapters from which they want to read. Dr. Friedman provides information on the treatment of these behavioral symptoms, specific tips for care partners in dealing with their partners’ symptoms, as well as practical suggestions to avoid burnout and maintain their own quality of life. There is also surprising information about why people with Parkinson’s shouldn’t go to the Emergency Room.

This book is written for individuals with PD, their care partners, families and loved ones. It helps the reader understand, address, and cope with common behavioral issues. Physicians and other health care professionals who work with those with Parkinson’s can also benefit by learning about the relationship between the brain and behavior and the impact neurology has on all facets of a patient's quality of life.

As a person living well with Parkinson’s, I benefited from reading and highly recommend Making the Connection Between Brain and Behavior: Coping with Parkinson’s Disease.

About Joseph H. Friedman, MD:

Dr. Friedman is the Director of the Movement Disorders Program at Butler Hospital; Professor and Chief, Division of Movement Disorders at the Alpert Medical School of Brown University; Adjunct Professor in the School of Pharmacy at the University of Rhode Island; and the Clinical Director of the American Parkinson’s Disease Association Information and Referral Center in Warwick, Rhode Island.

Author of Making the Connection Between Brain and Behavior: Coping With Parkinson's Disease (first and second editions) and co-author of Taking Charge: Good Medical Care for the Elderly and How to Get It, Dr. Friedman has also authored or co-authored over 400 papers, abstracts, and book chapters on a variety of topics related to movement disorders and has also presented numerous lectures to neurologists, psychiatrists, internists, health professionals, and patients throughout the United States and around the world.

In addition, Dr. Friedman is the recipient of the Aronson Chair for Neurodegenerative Disorders.

Her Passion for Life is Contagious

Her book is not whiney or depressing. There is no hint of “poor me” or of being a victim. Instead, I was inspired and encouraged by reading Allison Smith-Conway’s recently released memoir, I Am Not Contagious.

Currently at the age of 34, Allison has experienced three life-changing diagnoses: an auto-immune disease at the age of 13, colon cancer at 24 and Parkinson’s Disease at 32. She has undergone multiple surgeries and has endured life-changing procedures for colon cancer as well as had Deep Brain Stimulation for Parkinson’s.

With her Master’s degree in Marital and Family Therapy, her interest in health and fitness and certification as a personal trainer combined with her personal experience of chronic illness, Allison founded the program, Parkinson’s in Balance. She enjoys helping people with their day-to-day struggles with Parkinson’s, focusing on living in the present rather than being preoccupied with the uncertainty of the future. Parkinson’s in Balance organizes support groups, fitness classes and outreach. In April of 2012, Allison’s efforts were recognized by the National Parkinson's Foundation, which named her a Parkinson's Superstar for her exemplary contributions to the Parkinson’s community.

While her illnesses aren’t contagious, Allison’s passion for life and indomitable spirit are catchy. Read more about Allison Smith-Conway, I Am Not Contagious, and Parkinson's in Balance at: http://parkinsonsinbalance.net

 

Shaky Paws Grampa Has Arrived

... and just in time for the 6th Annual Southeastern Parkinson Disease Conference in Atlanta, Georgia from October 14-16.

FOR IMMEDIATE RELEASE

Innovo Publishing LLC Releases Carson and His Shaky Paws Grampa by Kirk Hall.

Summary/Description: Innovo Publishing LLC released Carson and His Shaky Paws Grampa, Book 1 in the Shaky Paws Grampa series. Shaky Paws is a story about the relationship and love between a seven-year-old boy and his grandfather who has Parkinson’s disease and essential tremor. This book is available now in the U.S. and internationally in hardback, paperback, Apple iBook, Amazon Kindle, Barnes and Noble Nook, and Google Android editions.

Memphis, TN – October 12, 2011 – Innovo Publishing LLC released a new title, Carson and His Shaky Paws Grampa, written by Kirk Hall and illustrated by Alison Paolini. Both the author andillustrator live with Parkinson’s disease (PD) as do an estimated 6 million people worldwide, with 50,000–60,000 new cases being diagnosed each year in the U.S. alone. The author—and approximately 10 million other Americans—also lives with another movement disorder called essential tremor (ET).

Carson and His Shaky Paws Grampa, Book 1 in the Shaky Paws series, is designed to help parents and grandparents comfortably talk about the initial symptoms of PD and ET and address common questions and concerns children may express. This loving story blends well with Paolini’s charming watercolor illustrations and is written with words simple enough for a child to understand. Based on the author’s personal experience with Parkinson’s and ET, Hall’s approach to this important topic isgentle and effective in reducing concerns with children and younger family members and friends.

Carson and His Shaky Paws Grampa not only deals with symptoms of PD and ET, but it touches on an innovative and effective treatment the author successfully underwent called deep brain stimulation (DBS). DBS has resulted in a remarkable quality of life improvement for the author, which he writes about in his book. Carson and His Shaky Paws Grampa is the first book in the planned Shaky Paws Grampa series and will be followed by additional titles that gently explore the more advanced stages of PD.

Hall will be showcasing and signing his book at the 6th Annual Southeastern Parkinson Disease Conference in Atlanta, Georgia. The conference begins October 14 and ends on October 16. A portion of the proceeds from the sale of this book will be donated to support Parkinson’s and essential tremor research and awareness.

Carson and His Shaky Paws Grampa has been enthusiastically endorsed and supported by a number of Parkinson’s and essential tremor research and philanthropic organizations including the following:

“Wonderful story. So warm, thoughtful, and heartfelt. Loved it! A must-read for anyone with ET or PD.” —Catherine S. Rice, Executive Director, International Essential Tremor Foundation

 “. . . a charming story that provides helpful guidance to PD patients for answering their grandchildren’s innocent questions.”  —Margaret Anne Coles, Program Manager,Muhammad Ali Parkinson Center/Barrow Neurological Institute

“. . . a fabulous book with remarkable illustrations.” —Cheryl Siefert, Executive Director, Parkinson Association of the Rockies

 “Great story that touches on DBS surgery and its dramatic positive effects.”—Ben Petrick, former Rockies/Tigers baseball player and Parkinson’s patient who has had DBS surgery

“. . . demystifies Parkinson’s for the youngsters in your family.” —Joel Havemann, retired Los Angeles Times editor, author of A Life Shaken: My Encounter with Parkinson’s Disease

Carson and His Shaky Paws Grampa, Book 1 in the Shaky Paws series, is available now in the U.S.and internationally in hardback (ISBN: 978-1-936076-91-8), paperback (ISBN: 978-1-61314-009-3), Apple iBook for iPad, iPod, and iPhone; Amazon Kindle; Barnes and Noble Nook; and Google Android editions. Large wholesale orders may be placed by contacting Innovo Publishing at [email protected] or calling 1-888-546-2111. Wholesale orders may also be placed viaBaker & Taylor and Spring Arbor distributors.

About the Author: Kirk Hall lives in Colorado with his wife of 42 years, Linda. Their two sons and their families live nearby. He was diagnosed with ET in 1991 and PD in 2008 and had successful DBS surgery for tremor stemming from both conditions in 2011. Kirk has participated in a variety of clinical research studies at the University of Colorado hospital and the National Institutes of Health in Bethesda. Kirk and Linda are active members in the Parkinson’s Association of the Rockies. He is also a member of TeamFox. Their active lifestyle includes skiing, camping, hiking, golf, tennis, workouts at the local recreation center, bike riding, babysitting, watching grandkids play sports, and more. They are also involved in the life of their church where Kirk is a member of the choir. He recently tried ziplining in Costa Rica and loved it!

About the Illustrator: Alison Paolini lives in Northern California where she enjoys a multitude of creative activities. She studied acting and set design in New York and fine art with illustration at California State University at Northridge. She also taught “Drawing On Your Imagination” for eight years at The Paradise Art Center and shows her work at local art galleries. Alison is a published illustrator and poet. She is an active member of the Parkinson’s Association of Northern California. She and her husband have two children and three grandchildren. They have enjoyed living in and visiting many parts of the world. Alison was diagnosed with Parkinson’s in 1999 and believes firmly that staying creatively active is crucial in coping with the disease.

About Innovo Publishing, LLC: Innovo Publishing is a full-service Christian publisher serving the Christian and wholesome markets. Innovo creates, distributes, and markets quality hardback and paperback books, eBooks (Kindle, Nook, iPhone, iPad, ePub, Android), audiobooks (CD & MP3), music, and film/videos through traditional publishing, cooperative publishing, and independent publishing models. Innovo provides distribution, marketing, and automated order fulfillment through a network of thousands of physical and online wholesalers, retailers, bookstores, music stores, schools, and libraries worldwide including Amazon, Audible, iTunes, Rhapsody, Barnes & Noble and many more. Innovo publishes Christian fiction and non-fiction books for all publishing genres.

Visit Innovo at www.innovopublishing.com.

Contact Information:

Contact: Dr. Bart Dahmer

Innovo Publishing LLC

Phone: 1-888-546-2111

Web Site: www.innovopublishing.com

Email: [email protected]

Shaky Paws Grampa

 
CARSON AND HIS SHAKY PAWS GRAMPA, the first book in Kirk Hall's Shaky Paws Grampa series, is a story about the relationship and love between a grandfather who has Parkinson's Disease and his seven-year-old grandson. The story is designed to help parents and grandparents comfortably talk about the initial symptoms of Parkinson's Disease and address common questions and concerns children may express.

For more information on Carson And His Shaky Paws Grampa, visit Kirk Hall's blog and facebook page at:

http://shakypawsgrampa.blogspot.com/

http://www.facebook.com/shakypawsgrampa

To order this inspiring book: http://www.innovopublishing.com/Featured-Book-Shaky-Paws-Grampa.html