By Deb Bunt, Suffolk, England
I’d always maintained that “Slow Puncture” would be a one-off book. This book, published five years ago, charts my friendship with Peter Berry, who was diagnosed with young onset Alzheimer’s at the age of 50. The book gives an account of Peter’s diagnosis, his depression and then his determination to prove he can live well with this condition. Peter, a keen cyclist with a penchant for cycling on his penny farthing bike, undertook several cycling challenges to raise awareness of the disease. The book is also an account of my increasing understanding of Alzheimer’s and how the friendship changed my own perspective on my own life.
Since its publication, it became obvious that, not only was there a desire from others to follow Peter’s journey, but there was also another story to be told. “Patching the Puncture” (the title was aptly chosen by Peter) covers a range of themes: friendship, mutual support, cycling, our achievements and some of strategies which help Peter to continue to live well. It is not only about how Peter lives well with dementia, it is also an account of how our evolving friendship changed my life.
As Peter’s friend, I’m in a privileged position of walking alongside him and am privy to his thoughts and emotions around the changes in his condition. Peter wanted to share this; I was delighted to write it. It is both an acknowledgement and a thank you to Peter because his diagnosis helped me to find my own purpose in life. As Peter says, “dementia takes so much from me but if I can take something back from it, then it doesn’t seem so bad.”
If I had to pick one seminal chapter, one ‘light bulb’ moment for me, it would be the chapter called “Accept, Adapt, Accommodate, Anticipate”. As I typed each sentence, each page, my understanding seemed to grow.
“Dementia is a moving target,” Peter said. “I can’t change but those around me can. I can’t enter your world, you have to enter mine. My world is like the outline of a pencil drawing. There’s no colour. It’s up to others to fill in that colour.”
Our friendship has provided opportunities to do just that. This friendship has been a bright and colourful beacon for both of us. With the colour, comes joy; I want Peter to feel the joy and to see the colour because when Peter is content, I am content.
Peter accepts that he can no longer make memories. The emphasis is on making moments. But I can make memories which I willingly share with Peter; I am – and will continue to be – his ‘plug in and save device.’
Despite periods of depression, Peter still presents positively and his determination to live well remains unabated. I hope that the book reflects this balance between pragmatism and positivity. Peter lives with dementia but he also blows apart the preconceptions around dementia; he has inspired many and will continue to do so and will give hope to people with dementia, their families and friends.
It is not only my association with Alzheimer’s that spurred me to write this book; it is my wish to share what this friendship represents for both of us. Peter has given me so much and this is what I can give him in return. The book is a testament to a friendship, lived and enjoyed in the moment and mirrors how Peter lives his life.
I’ve been friends with Peter for over seven years. In truth, I can’t imagine my life without his friendship – I suspect that this is the same for him – and this unusual connection between us motivated me to write this book.
Peter Berry (61) was diagnosed with young onset Alzheimer’s when he was 50 and, with a life expectancy of 8 to 10 years, set about proving that it is possible to live well with this condition. Before his diagnosis, Peter owned a thriving timber business. Peter continues to be a keen cyclist and still cycles on his penny farthing. Peter is married and has one daughter.
Deb Bunt (64) and her husband took early retirement and moved from London to Suffolk seven years ago. During this time, Deb has acquired one broken shoulder, five grandchildren and six bikes. She has also made a wonderful friend in Peter who has transformed her life.
