Slow Puncture: a Memoir About Living Well with Early Onset Alzheimer’s by Peter Berry and Deb Bunt

By Peter Berry and Deb Bunt

Surprising things can happen on the back of random decisions. When my husband and I moved from London to rural Suffolk, we were hankering for a quiet life. However, I hadn’t reckoned on two factors to change our expectations: one was meeting keen cyclist, Peter Berry (who at 50 had been diagnosed with early onset dementia), the other was breaking my shoulder. Obviously these two events did not occur simultaneously – meeting Peter was not that dramatic! – but I wouldn’t have dreamed that these two elements combined would have yielded the book Slow Puncture.

As Peter and I cycled together, our friendship grew and he started to share the story of his dementia diagnosis. When he said, “I fear I am just going to forget who I am,” I offered to keep a note of his thoughts for him.

I knew there was a book to be written, but it took a while to find the right fuel to ignite it. When I came off my bike and broke my shoulder, I had time to reflect on my self-pitying mood about a minor, short-term injury and compare it to Peter’s bullish attitude about his brutal, terminal diagnosis. (See, I said the two events were linked.) That was the fuel I had been looking for.

As the book sparked into life, I realised it wasn’t just about Peter and his family’s journey with dementia, nor was it just a story about our friendship – although both of these threads are integral to the book. There are two key themes: one, is how to live well with dementia and two, is my growing understanding of what Alzheimer’s is – specifically Peter’s Alzheimer’s.

I am not so arrogant to think I will ever know what it’s really like for Peter to live with dementia, but I have a better understanding now. Peter has helped me shed those damaging, stereotypical notions about Alzheimer’s: Peter has willingly handed me his shoes and encouraged me to stand in them. I remember how the shoes pinched when I put them on, I didn’t like the pain and I was reluctant to persevere. But now, with his guidance, I wear them more easily and can walk in his world, albeit briefly.

Although being diagnosed with dementia is intensely personal and private and, initially, the family kept it that way, Peter is now keen to share his story.

“Dementia is a diagnosis for the whole family,” Peter says, “but don’t keep it secret because it will eat away at the whole family.”

If you look at Peter when he is cycling, you would not know that this fit, healthy man (or, as he likes to say, “healthy from the eyebrows down”) is living with dementia. With Peter, I see the man who is my friend, not the dementia. I know that he has looked squarely into the eyes of the dementia stigma and challenged it to a battle. He is determined to enjoy each moment because, as he says, “yesterday is lost and forgotten and tomorrow will be mine, but only for a short while.”

I didn’t know Peter’s world before his diagnosis, but I know that his dementia world can be bleak and dark. Despite this, Peter retains a wonderful positivity.

“If an ordinary guy like me can achieve,” he says, “then anyone can achieve. If my story helps just one person, then it’s a story I am happy to share.”

Cycling frees Peter from the shackles of dementia. It’s fitting that I leave you with his words:
“Cycling is like a balloon that takes me high into the sky, far above the dirty mist of dementia. Up here I can breathe and think, down there I am suffocated. Long may I fly on my bike.”

About the Authors:

Deb:
I am married with two sons and two grandchildren. I’m now retired from working as a family practitioner and living in glorious Suffolk, where my days are spent with friends and family, cycling, drinking coffee, eating cake, trying to play Beethoven on the piano and, above all, trying to perfect the skill of “living in the moment.”

Peter:
I’m married to Teresa and have one daughter, Kate. I owned a successful timber business which I was forced to give up after my diagnosis of early onset dementia but I can still identify any tree at a glance. I’m passionate about all types of bikes and own a 1950’s Claud Butler, a single speed bike, a 1945 F C Parks touring cycle, a mountain bike and, of course, a penny farthing affectionately referred to as “Penny.”

Connect with Peter and Deb:

The main website is at https://peterberrylwa.wixsite.com/peterberry
Facebook at https://m.facebook.com/DebBuntAuthor
Facebook at https://www.facebook.com/PeterBerryLivingWithAlzheimers/
Twitter at https://twitter.com/PeterBe1130
Instagram at https://www.instagram.com/peterberry8/