Vicki's Voice

Young Hope The Broken Road by Tracy Mobley
We’ve chatted online with Tracy Mobley, a person with dementia, who’s been a strong advocate for support of people affected by dementia as well as educating the public about these diseases. In her book, Young Hope The Broken Road, Tracy writes about Dementia and Alzheimer’s Disease as a person suffering from dementia, seeking to help more people understand these diseases. As she wrote, “You will feel the pain and the laughter and I am hoping that what I have written will help to remove the misconception of this disease.” (Jim Coyle, April 8, 2010)

Dancing With Dementia: My Story Of Living Positively With Dementia by Christine Bryden
This is one of two books Vicki told me she’d read after she was diagnosed with Frontotemporal Dementia to learn about FTD, especially from a sufferer’s experience. I’ve read the book to help me understand what a person with dementia experiences so I can provide more effective presence and support. This book is an amazing story of the author’s life with FTD and her work as an advocate for wider understanding and support. In the second half of the book, she describes what it’s like to be living as a person with FTD and makes excellent suggestions on how we can and should understand, support and communicate with a person with dementia. (Jim Coyle, April 8, 2010)

Still Alice by Lisa Genova
This is the other book Vicki read soon after she was diagnosed with FTD, and one which she says has been especially helpful in the first months following her diagnosis. Vicki identified with many of the changes experienced by Alice, the central character in this book. The author, Lisa Genova, is a neuroscientist and chose to take a fictional approach to share a more universal story of persons experiencing dementia. Although the story centers on a person with Alzheimer’s Disease, there are many similarities to the experiences of other types of dementia as well. This book has been a valuable help to me as well in learning more about what Vicki is experiencing. (Jim Coyle, April 8, 2010)

Life in the Balance: A Physician’s Memoir of Life, Love, and Loss with Parkinson’s Disease and Dementia by Thomas Graboys MD
Like the books above, this is the story of one person’s life as a person with dementia. The author is a highly skilled and empathetic physician who was diagnosed with Parkinson’s and Lewy Body Dementia a few years ago. It is a compelling description by Tom Graboys of the advancing effects of Parkinson’s and dementia on his own life and the impact on his family and friends. Graboys’ authenticity and candor reflect someone who really cares about people and tries to connect and communicate with the people around him, and through this book, all of us. It’s an amazing story of a person coping, caring and living as fully as he can. (Jim Coyle, April 8, 2010)