Monday, April 4, 2016

Before I Forget

Title:  Before I Forget: Love, Hope, Help, and Acceptance in Our Fight Against Alzheimer's
Author:  B. Smith, Dan Gasby, and Michael Shnayerson
Publication Information:  Harmony. 2016. 336 pages.
ISBN:  0553447122 / 978-0553447125

Book Source:  I received this book through the Blogging for Books program free of cost in exchange for an honest review.

Opening Sentence:  "I know where I'm going."

Favorite Quote:  "The literature has only these words of comfort for a patient and her family at this stage. Remember, there is still a living spirit inside this diminished person, the spirit of someone you love."

Barbara Elaine Smith. B Smith. Supermodel. Chef. Restaurateur. Retail designer. TV and stage actress. Author. Style and lifestyle icon. Woman. Wife. Mother. And now, early onset Alzheimer's patient.

The tag lines on the B Smith website read "Whatever you do, do it with style" and "Standing up, living strong." Both apply to the life B Smith has led, and both apply even more so with her diagnosis in 2013 at age 64 of early onset Alzheimer's.

Since her diagnosis, her husband and and partner Dan Gasby and she have been publicly sharing their  struggles and become vocal advocates for diagnoses, treatment, and research. This book is part of that outreach effort and a courageous public picture of their own very personal battle.

This book is in part a very personal story of loss and grief tempered with strength and hope. It is the story of a family dealing with a devastating diagnosis and all the life changes that diagnosis brings with it. "Alzheimer's does that to every family:  shows you who's in and who's out, whom you can depend on and who gives you a pass." We hear B's words in brief interludes. We hear primarily of Dan's challenges as a caregiver - the grief of watching a loved one change, the day to day challenges of being a caregiver, the adaptations of lifestyle to allow him to care for B, and sometimes the anger and frustration at the situation.

Embedded in this very personal story is also a guidebook for navigating this disease. Sections titled "Lessons Learned" appear throughout the book and deal with everything from symptoms, medications, insurance, and research. Many of this information can be found in other resources as well, but this book provides personal, case-study like details that puts the information into a more understandable and approachable context. For example, when they reach the point of looking for home health care, they are able to afford it, but the book raises the questions of the millions who cannot afford such care. What options are available? What support is available? Note also that some of this information is available for download on the B Smith website. The book itself also includes an additional appendix with a list of resources such as organizations, books, and other tools that can help both patients and caregivers.

The other key focus of the informational sections of the book is B Smith's African American heritage. One stated purpose of the book is to get information out to the African American community and to try and bring greater balance to the ethnicities represented in the research being done. Since genetic studies are such a large component of brain health research, this representation is critical to ensuring that research will bring benefit and a cure to all patients.

The word that comes to mind while reading this book is courageous. Courageous not only in bravely meeting the challenges of this disease but also in sharing those challenges with the public so that others may benefit. My wish to B Smith and her family is the statement with which the book itself ends. "Good luck to us all."

Please share your thoughts and leave a comment. I would love to "talk" to you.

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