The PSP Chronicles Volume II
5.0 out of 5 stars A humorous, heart-wrenching, and brutally honest diary about life with PSP – Heather: Reviewed in Canada on January 15, 2020 Format: Kindle EditionVerified Purchase Just finished your book “The PSP Chronicles Volume II”. As with Volume I, your sense of humour comes through strongly. “When my bowels move, it feels like I’m crapping cantaloupes. An experience that’ll never leave you waiting eagerly for the next anal delivery.” had me howling. But your willingness to be so open about PSP and what it has done and continues to do to your life and those closest to you is what struck me the most. “It is hard to mourn the loss of a loved one. But even more difficult to mourn the day by day loss of a loved one who is still here.” and “As we were driving, I began to think about where and who I am. I’m a passenger in and outside of the car. No longer in the driver’s seat of life and now having to settle with going along for the ride. I used to tell people that in life there is the horse and then there is the rider. You decide which one you will be. This decision will shape and define you. Funny, I never once considered one day I might be the horse. How ignorant of me not to consider how many of those who are riders, had no say in that determination.” forced me to really acknowledge the devastation of this disease.
In THE PSP CHRONICLES, author Tim Brown struggles to a place of peace after receiving a life-changing diagnosis. Soon after Brown discovers that his memory lapses, his changed gait, and his moodiness are all attributed to Progressive Supranuclear Palsy (PSP), a rare neurodegenerative disorder similar to Parkinson’s, he begins a journal to record his experiences. THE PSP CHRONICLES is the memoir-esque result of these efforts.
In his narrative, Brown works hard to record the daily burden of living with a neurodegenerative disease. Keeping this record of his daily life helps him realize that his faith has enabled him to lay by inner stores of hope upon which he can still draw.
Without a better sense of Brown’s pre-diagnosis family life, work life, and personal life, readers have to strain to grasp the post-diagnosis fall-out. Despite this—and perhaps because of it—Brown’s narrative can be affecting.
THE PSP CHRONICLES is not meant to explain PSP or to give readers comprehensive (or even objective) insight into PSP’s destructive path. Instead, THE PSP CHRONICLES is meant to show readers how an unexpected, incredibly difficult, and life-altering diagnosis has affected the life of this man Tim Brown.
As Brown writes, “This story and subsequent books aren’t meant to be perfect written works. This is a true story of my personal journey with a rare, terminal brain disease.” In this sense, Brown doesn’t have to explain how his external and internal life have been devastated: It’s written on the page.
THE PSP CHRONICLES is raw, because the journal is delivered as-is; it is episodic and not organized as a tension-driven story. It provides insight into an everyman’s experience writing through a devastating disease.
Jennifer: I am continually amazed at your faith and willingness to share and open your life to help others, and I hope you know how much that has meant to me, and this widespread community.
Sarah: I enjoy your posts immensely, Tim, although so sorry for your struggles. I appreciate your philosophical outlook and poetic expression, as well as your frankness and the details about your physical condition.
Marie: Your PSP Chronicles are invaluable. Thank you so much for all your hard work. I am beginning to understand what my husband has been through and what is ahead of me. You are a good man and are giving all of us an insight from the sufferer’s point of view.
Patrick: This paragraph in your blog I found particularly relevant to how I feel sometimes… even though I’m only at the beginning of my journey. “I have never truly lingered on my own mortality, although I must admit it has given me pause on more than one occasion. I’ve made my peace with God long ago and I’m comfortable with that; however, like most, I’m in no hurry to go”.
EC: I’m grateful for your shared experience and insight. I deeply admire your stubborn resistance to PSP, and your ability to write so clearly and honestly. I enjoy your humor.
DD: Oh my Goodness … what an awesome blog. I don’t often share too many of these PSP posts with my husband but had to share some of your paragraphs with him … we laughed, and we cried. In our pretense that life is normal, it felt good for us to share the humor and sadness of this disease!
SS: Tim. You are indeed an incredible & admirable individual. Please keep posting because you help us understand PSP more than ever.
Cindy: I smiled, frowned, laughed and cried. Thank you Tim for sharing your story – a honest, raw account from someone living with PSP.
Margarita: I just finished your book. I thought it was excellent. I look forward to the next book
PSP (Progressive Supranuclear Palsey) is a mid-life neurodegenerative disease. There is no medication for curing it or slowing it down. At first it is often mis-diagnosed as Parkinson’s, but Parkinson’s produces ALPHA-SYNUCLEIN in the brain, and PSP produces TAU. Two very different brain diseases.
The duration and the appearance of symptoms differs from person to person. Dudley Moore died of PSP.
I just finished this book, written by Tim Brown who takes us with him on his journey with PSP/early onset dementia. At the age of 57, July 2013, he is given his diagnosis. The book starts in 2012 and leaves us in 2016 with promises of a another book. Tim started with a blog until he decided to turn the blog into a book. The book takes us through Tim’s daily life…..lives in Canada with his 2nd wife, a biological son, a step-son, several cats, two dogs, and caretakers that come for a few hours every few days.
It is not a how-to book for caretakers, but an insight into the progress of the disease, the symptoms, the challenges, and the extra-ordinary spirit, strength, and faith that Tim has.
My son died of PSP at the age of 55 years old, May 4, 2017. My son was highly academically educated, and with much hope and expectation for his future. Tim’s approach to his illness has given me much insight. I have read several other books by caretakers of PSP. I find this book offers so much more than the others I have read.
Tim WRITES CLEARLY. I found it to be a very honest account, and because of his faith without self-pity. I Highly recommend this book, and I look forward to the next volume.
As a caregiver for my late husband who died in 2012 of PSP, I can honestly say this was a very telling perspective from the patients view. Thank you for writing this book. As a CurePSP Support Group and Carepartner Facilitator I plan to share this book with both patients and caregivers. I believe it will be very helpful as they are challenged with the progression of this horrific disease.
CurePSP Board Member
Chair, Patient & Carepartner Advocacy Committee