Thursday, August 7, 2014

Update on the response to Window of Opportunity

I am happy to report that Window of Opportunity is on the recommended reading lists for the Parkinson Disease Foundation, National Parkinson Foundation, Michael J. Fox Foundation, and the Lewy Body Dementia Association.  Below is an updated list of responses received to date:

Reader Comments 

"This book by Kirk Hall with a forward by Benzi Kluger, M.D. offers a real-world honest and helpful window into the life of a Parkinson's disease patient who is experiencing cognitive challenges.  There are many useful tips, and also many great stories that will provide comfort to both Parkinson's disease patients and caregivers.  This is just terrific and a really important contribution to the literature.   I highly recommend the book."

Michael S. Okun, MD
Medical Director, National Parkinson Foundation 
Professor of Neurology
University of Florida

Kirk Hall delves into the frightening possibility of developing dementia as his Parkinson’s disease progresses. Candid, insightful, and forward-thinking, Kirk demonstrates through his book and his advocacy that cognitive impairment in Parkinson’s disease is not an end to life, but simply a turn in the road that must be negotiated and accepted, but not surrendered to. Window of Opportunity is a must-read for anyone concerned about cognition in Parkinson’s."

Angela Taylor
Director of Programs
Lewy Body Dementia Association

“I just opened the first chapter about 2 hours ago and couldn’t stop….I just finished it. It is an excellent book!” 

Carol J. Walton
CEO, Parkinson Alliance

"Window of Opportunity" is a unique, first-hand account of the "in between time" that comes upon acceptance of a diagnosis and before succumbing to an illness. This thoughtful, unflinching narrative explores the author's journey from his diagnosis of Parkinson's disease in 2008 through his research into the mysterious threat of cognitive dementia in his future.

When my mother was diagnosed with Lewy body dementia, I searched for a book like ‘Window of Opportunity.’ It is a touchstone for those struggling with a dementia diagnosis and the people that love and care for them.” 

Leigh Ramsey
Daughter who lost her mother to LBD

“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.”

Kate Kelsall
Co-Founder and President of DBS Voices of the Rockies,
Co-Founder and Co-Leader of the Bionic Brigade DBS Support Group
Parkinson’s blogger: Shake, Rattle, & Roll 

“Just finished reading the manuscript and can truly say what a wonderful book this will be for so many people…PWP, family members, caregivers. It was an easy read, honest, ‘story like’ which, for me, lends itself to being a page-turner. You could truly hear your voice, the passion and desire, to help educate others.”
Cheryl Fortunato
Daughter of an LBD patient

Your book is an excellent piece of work. I particularly enjoyed reading about your history and your approach to handling the difficult things God has allowed you and your family to face.  The chapter on faith was inspiring and very humbling. I can only imagine how useful this book will be to a large number of folks who are facing similar situations.”

Rich Carnahan, Ph.D.
Stephens Minister
Retired Aerospace Engineer

“Window of Opportunity is the story of one person’s journey through the initial signs of cognitive impairment brought on by Parkinson’s disease and the uncertainty of a future that might include dementia. Kirk Hall, only 58 at the time he began noticing small signs of mild cognitive impairment, tells his story with directness, candor, sensitivity and humor.  He describes the long and seemingly endless visits to doctors seeking answers to his disturbing symptoms and the confusion caused by conflicting opinions about the progression of his disease. His copious notes on his symptoms and mental state allow him to describe in vivid detail his slowly coming to grips with disability and the increasing lifestyle changes required to offset progressive cognitive difficulties.  He shares the internal struggle, anxiety and stress that uncertainty causes, not only for himself but for his family as well.

The book is a tribute to someone who is able to maintain a positive orientation despite the threat of something as devastatingly frightening as dementia.  It is also a journey of discovery as Kirk transitions into the healing aspects of giving back to the Parkinson’s community through helping others and sharing his story. Indeed the reader will take away important insights into the importance of keeping a patient journal, patient self-advocacy, and shared decision-making. And, perhaps most powerful of all, are the insights into how a potentially disabling diagnosis can be a “window of opportunity” to contribute in a meaningful way to the body of knowledge about a disease and to help others on the path.”

Diane Cook
Leader, LEAP Parkinson's Support Group
People with Parkinson's Advisory Council, Parkinson's Disease Foundation
Colorado State Director, Parkinson's Action Network
Senior Patient Advocate, ProjectSpark Foundation

“When Jim and I met Kirk Hall at a Parkinson’s conference in Colorado, we were impressed with his obvious intelligence and knowledge. When I read his book, that was confirmed, but most of all, I was impressed with his courage and determination. Like others facing dementia, he found himself alone. Even his wife could see only the positives at first. Yet, he motored on, seeking a diagnosis that fit his symptoms. In the meantime, Kirk’s book shows that he did all of the physical things that help to keep dementia at bay—things like exercising, yoga, eating right and decreasing stress. But he did more. He moved closer to his grandchildren, increased his focus on spirituality and reached out to others, teaching and sharing. And then he started writing, joining that small group of men like Dr. Thomas Grayboys, Rick Phelps and Charles Schneider who tell about dementia from the inside out. As caregivers, Jim and I can only write about dementia from the outside in. We join all dementia caregivers in our gratefulness to men like Kirk who give of their very soul as they tell us what it is like to feel dementia encroaching. Thank you, Kirk, for your heartfelt story. We recommend it to not only all PD and LBD caregivers, but to the medical community as well.”

Helen & James Whitworth
Authors, A Caregivers Guide to Lewy Body Dementia

“I was impressed by the amazing relationship that you have forged with Dr. Kluger, one more akin to a relationship of equals than I have ever witnessed between a doctor and a patient.  This is a tribute to both you and Dr. Kluger.  I sincerely hope that you have many years ahead of you to write, speak and contribute to the Parkinson’s community.  I also send my best wishes to Dr. Kluger with respect to his exciting new venture in establishing what is, to the best of my knowledge, the first palliative care clinic devoted to PWPs in the country at the University of Colorado Hospital.”

Valerie Graham

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