Social experiment shows what it’s like to live with Parkinson’s for one day
Parkinsons1Day video project teaches empathy skillsREAD MORE
From maintaining a positive attitude through the ups and downs of Parkinson’s to helping children understand the condition, we’ve selected eight page-turners that you won’t want to put down – all written by people with Parkinson’s.
We asked each author to introduce their book to Parkinson’s Life readers and share how the condition has inspired their writing
This humorous graphic novel by former US news cartoonist Peter Dunlap-Shohl guides readers through Peter’s experience of Parkinson’s – from his battle with depression to the impact of the condition on his relationships.
“I resisted the idea of writing a book about Parkinson’s for years,” says Peter. “As novel as the comic format might be in the area of Parkinson’s literature, I didn’t want to merely echo what was already out there in a different form. Then a friend said to me, ‘But you treat your Parkinson’s as an adventure.’ That unlocked the gate for me to write ‘My Degeneration’.
“I hope that readers find inspiration and credible hope in this story, as well as a guide to what their experience of Parkinson’s might look like.”
In this honest and emotional memoir, cycling enthusiast Nan Little shares how the sport helped her become physically and mentally stronger after her Parkinson’s diagnosis – in the hope that others will take inspiration from her experience.
“Having Parkinson’s is not easy,” says Nan. “We never know what the next day, or hour, might bring. My book shares my efforts to regain some control of my life through exercise. Even though my fingers couldn’t hold a toothbrush, at age 65 I climbed Mt. Kilimanjaro with a group of people with MS and Parkinson’s. It wasn’t easy but it was worth it.
“Parkinson’s is not our fault, it’s an unsolicited challenge. I hope my book helps people realise that we have many options for facing that challenge.”
British author Dean G. Parsons reflects on his life before and after Parkinson’s diagnosis– using narrative and poetry to explore the impact of the condition. Dean offers a frank account of what it’s like living with Parkinson’s – and how he remains optimistic about life.
“I was diagnosed with young onset Parkinson’s at age 45 and this book is my Parkinson’s story,” explains Dean. “Using a mixture of prose and poetry, I walk you through a glimpse into my life.
“While this book describes the devastating impact of this lifechanging condition – a strong sense of optimism, humour and hope prevail throughout. If you want to gain insight into life with Parkinson’s, or if you have Parkinson’s and struggle to explain it to others, then this book is the perfect read.”
This book by Canadian writer Dr Soania Mathur is aimed at helping children better understand Parkinson’s – from explaining what it is to offering guidance on how they can help loved ones with the condition.
“The challenges of Parkinson’s extend beyond those diagnosed, to the whole family, including children,” says Soania. “This book is written with contributions from my three daughters, who were all born following my diagnosis of Parkinson’s at the age of 27. Since we fear what we don’t understand, my book serves to enlighten children about all aspects of Parkinson’s and empower them to make a difference.
“Talking about the condition, addressing their concerns and encouraging them to take action – be it going for a walk with their loved one or being patient if activities take longer than expected – can make diagnosis less scary for children.”
Netherlands-based author and social entrepreneur Nick Pernisco explains how adopting a ‘warrior mentality’ helped him manage his young onset Parkinson’s diagnosis. Through sharing his experiences, Nick encourages people with Parkinson’s to live a better quality of life.
“The book starts out with my own Parkinson’s story, and then I tell the reader all there is to know about the condition – including the cold truth that there is currently no cure,” explains Nick. “The reader will leave this section with the knowledge and vocabulary to speak with their doctors and be taken seriously. Finally, the book concludes with emphasis on keeping a positive attitude through the ups and downs of Parkinson’s.
“Parkinson’s Warrior informs and inspires those with the condition. By adopting a warrior mentality, people with Parkinson’s can live their best lives.”
“This book is a diary of my first 10 years living with Parkinson’s in Finland,” says Timo. “At the same time, it is a series of retrospective contemplation, or ‘verbal selfies’. I was inspired to write it after noticing the big changes that Parkinson’s causes – mental, physical, social, economical and medical.
“I hope that readers enjoy not only what I write, but also how I write. I’m a passionate lover of language, and this is my first book in English.”
This book by US author and journalist Sheryl Jedlinski shares her insights into and practical advice about living with Parkinson’s. Aimed at those with Parkinson’s, care partners and medical professionals, this book offers something for everyone in the Parkinson’s community.
“When I was diagnosed with Parkinson’s disease at age 44, I made it my mission to empower others to live well with this progressive, incurable condition – and to face lifechanging events with courage and dignity,” says Sheryl.
“Recounting over 20 years of my journey with Parkinson’s, my book mixes humour, hope, and humility as I share my entertaining adventures, challenges, triumphs, and coping strategies.
“Newbies, old-timers, care partners, doctors, nurses, and therapists will all benefit from learning more about the practical aspects of living with Parkinson’s. The topics are broad enough to be relevant to anyone experiencing a lifechanging event of any kind.”
“If you want a book full of poems about Parkinson’s, then don’t buy this book,” says Julie. “If, however, you want an entertaining and surprising poetry book for yourself or a friend, then this book is for you. And 30% of any royalties earned will be donated to The Cure Parkinson’s Trust.”
Julie also wrote a poem to explain what to expect from her book:
“These poems are about the sort of people you might meet
At work, in the pub or whilst walking down the street
Some happy, some sad and some a little bit daft
All are entertaining, many will make you laugh.
In the book everyone is different, as in real life
Some people love cheese, some people love their wife
And I must be totally honest and say
Some have Parkinson’s, which is often hidden away.
When you read this book, I hope you will enjoy
The poems about Cath, Dave and Alfie their little boy
The one about Nancy who likes to cross dress
And the one about Damon who’s in a bit of a mess.
Raising awareness of PD is what I aim to do
Subtly, without depressing you
So that when you finish the book sitting in your comfy chair
You want to find out more and are a little more aware.”
Parkinsons1Day video project teaches empathy skillsREAD MORE
How a symptom-tracking watch could improve Parkinson’s care servicesREAD MORE
A guest post from author Nick PerniscoREAD MORE