Books About PSP
Over the years, we have accumulated a collection of books that tell the story of PSP from various points of view. These books allow readers to see through the eyes of patients and caregivers, understand the journey they are on, and help explain the effects of PSP to the children in their family. Please follow the link below to see the complete list of books and reach out to us at firstname.lastname@example.org with any titles we should add.
A Brilliant Life Interrupted: Dr. Pauline Polette’s Personal Struggle with Progressive Supranuclear Palsy
by Sarah Oxford
This is the compelling story of the indomitable spirit of Dr. Pauline Cisneros Polette. A brilliant scientist and loving family member ultimately brought down in the prime of life by the devastation of PSP (Progressive supranuclear palsy).
The Happy Hours
by Kathryn Leigh Scott
With the health of her husband, Geoff, rapidly deteriorating, Kathryn Leigh Scott couldn’t help but notice how small and isolated their world had become. Between caregiver and patient, medical equipment and medicines, they began to lose contact with friends, the outside world, and even each other. The road to goodbye had become a lonely one. So Kathryn created “Happy Hour.”
Kathryn transformed their home from a place of illness into a place of healthy goodwill where their friends could stop by. For a few hours every day, their master bedroom became an intimate, lively space filled with drinks, food, laughter, and music. These precious moments enlightened their home and their hearts, and ultimately, led Kathryn and Geoff back to each other.
Filled with warmth, reflection, and authenticity, Kathryn’s story is as much a guide to gracious hosting as it is compassionate support for caregivers. For no journey is ever so bright as the one willed with friends, memories, and—above all—love.
by Patrick Dixon
The story of one man’s journey from hope to victory, HeHo takes the reader on a cross-continental adventure filled with discovery, humor, and wisdom. 100% of the proceeds from the sale of this book go to help those like Patrick Dixon’s mother, who suffer from progressive supranuclear palsy (PSP). This is the story of a six-month hike from Mexico to Canada along the Continental Divide Trail – told by a man doing a long-distance hike for the very first time.
Last Dance at the Savoy
by Kathryn Leigh Scott
In this lyrical, heartfelt, and at times gut-wrenching memoir, Kathryn Leigh Scott shares the journey through her husband Geoff Miller’s rare disease but more profoundly, she shares her intimate love story with the world. In tender and honest writing, Scott introduces readers to the world of PSP victims and their families.
Kathryn is an author and actress who married Geoff Miller, founding editor of Los Angeles magazine. Their marriage was put to the ultimate test when Geoff was diagnosed with progressive supranuclear palsy. Their drive to live life to its fullest despite his terminal diagnosis is a testament to the love of life and love for each other that drove them through all of their days together. This book reveals the power of such a deep abiding love—even after such a deeply personal and tragic loss. Copies of this book have been gifted to CurePSP, and proceeds of the sales will support our programs of care, consciousness, and cure of prime of life neurodegeneration.
Why Can’t Nana Play With Me?
By Richie Morris
This book illustrates the neurological disease progressive supranuclear palsy (PSP) told through the eyes of a child whose grandmother is inflicted with this disease. The story will help a child understand the difficulties of this affliction on both the person that has it, as well as the loved ones that are trying to care and understand. By educating a child about this disease, you help take away the fear and uncertainty of someone that is limited in their capabilities. Richie Morris, the author of the book, is donating a portion of sales to CurePSP in support of our programs of care and support. Copies are available directly from Richie by PayPal, simply make a payment of $15 at this page, and make sure you leave your contact details and mailing address in the comments section. If you have any issues, you can contact Richie directly at 912-484-0797.
You, Me, and PSP
By Steve Dagnell
Have you ever wondered what it is like to be dying? Knowing that you are within sight of reaching your own mortality?
This insight into the unique illness of PSP has been painstakingly put together for the exact purposes of showing how an illness can affect one person’s life. The devotion to ‘open up’ in this frank, ‘no holds barred’ biography is to allow you, the reader, to see how an ordinary life can change in such a short time.
Like many of us, Cilla remembered what it felt like to be invincible. To be able to run, skip, hop, jump, climb and generally be able to do almost anything. Through this book, Cilla thought that if her experiences were made public then she could, at least, help others…. indirectly or otherwise. Author Steve Dagnell has generously gifted us copies of this book for us to sell, in support of CurePSP’s programs of care, consciousness, and cure of prime of life neurodegeneration. Simply follow the link below, make a $20 donation, and we will send you a copy. For inquiries, please call our Donation Processing Officer at 443-578-5670
The PSP Chronicles
by Tim Brown
Tim has been blogging his PSP journey, sharing his personal experiences with this disease as well as FTD – frontotemporal dementia. His readership spans the globe. Through his efforts, it is Tim’s hope to give voice to those suffering from PSP and similar diseases that no longer have a voice of their own. Advocating for those affected… patients, spouses, families and friends. Always, with the goal of raising awareness, understanding and support to further research into prime of life brain diseases. He has made his story universal, yet personal and relatable.
Finding Meaning With Charles
by Janet Edmunson
In this inspirational and instructive book, Janet Edmunson helps others learn how to become supportive caregivers for loved ones enduring a debilitating and degenerative disease. Edmunson, a health promotion professional, cared for her husband Charles through a physically and emotionally devastating illness that ultimately led to his death in the same year the couple would have celebrated their twentieth anniversary.
Charles left many legacies and admirers, but one of these legacies was left for just his wife. Through the course of his life and then his disease, Edmunson learned the keys to becoming a supportive caregiver for a loved one who is ill. Her book teaches others how to help their loved one fulfill whatever aspirations are still possible, all the while becoming a stronger person because of the experience.
A portion of the proceeds from book sales will be donated to CurePSP and Parmenter Hospice. (If you cannot afford this title, please contact Janet at email@example.com to request a complimentary copy. Visit Janet’s website at www.janetedmunson.com)