‘Life isn’t over with dementia, it’s just different’

Peter Berry, who was diagnosed with early onset dementia six years ago

Peter Berry, who was diagnosed with early onset dementia six years ago - Credit: Charlotte Bond

September marks World Alzheimer's Month, a month dedicated to raising awareness around dementia, as well as challenge any stigma associated with the disorder.  

And one Suffolk man has made it his mission to show people that being diagnosed with dementia doesn’t mean life stops.

Meet Peter Berry, a 56-year-old from Friston. Like any other man his age, Peter loves his family, his friends, and one of his biggest passions - cycling. 

Deb, Peter, and Peter's wife Teresa

Deb, Peter, and Peter's wife Teresa - Credit: Charlotte Bond

But his life was turned upside-down just a few years ago following a diagnosis of early onset dementia at the age of 50.  

“It was my wife who first noticed a number of changes in me,” Peter explains.  

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“Up until then, I’d always had a good memory, especially when it came to work. But over a period of time, that changed considerably and I started to forget more and more.” 

It took Peter three years of hospital visits and tests in order to get to the root of his sudden memory loss – with the subsequent diagnosis coming as a shock. 

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“We initially didn’t think it was anything to do with dementia. At first, we were concerned it was a brain tumour, or something along those lines. 

“When I first got the dementia diagnosis, in a funny sort of way, I was quite relieved as it wasn’t what I originally thought it was. But it soon sank in that it wasn’t a good thing, whichever way you chose to look at it.” 

Peter Berry in 2020

Peter Berry in 2020 - Credit: Sarah Lucy Brown

Dementia is a syndrome associated with an ongoing decline of brain function. Often associated with memory loss, other areas it causes difficulties in include thinking speed, mental sharpness, mood, movement, judgement, and language.  

One of the most common forms of dementia is Alzheimer’s disease. That, along with vascular dementia, make up the majority of cases.  

Early onset dementia typically occurs in those who are aged 65 and under. According to NHS statistics, there are more than 850,000 people in the UK living with dementia. It affects one in six people over 60, and one in 14 over the age of 65.  

Coincidentally, Peter’s father was diagnosed with Alzheimer’s at the age of 70. 

“When he was diagnosed, I took over the family timber business from him and ran it for about 25 years before I myself was diagnosed.” 

Being told you have something as serious as dementia leads to a lot of sudden life changes. As Peter explains, the turmoil he and his family went through following the news, was devastating. 

“I think to begin with, we were just trying to get our heads around it, especially as there wasn’t as much information on dementia in people of my age group. We were as guilty as others when it came to thinking it was just something that only affected the older generation.” 

In addition, Peter had concerns when it came to his business, and what the future held for him and his family.  

“We were wondering do we tell people, would they look at me differently, and would the business suffer as a result if they found out about my diagnosis? That was something we found very difficult to deal with, especially as there can be a stigma around a condition such as dementia. What followed was quite a depressing time,” he says.  

But one of the things that helped keep Peter going during his darkest days was his love of cycling – and his best friend Deb Bunt.  

The two formed an unbreakable bond after a chance encounter in a local bike shop one day, and have been tight-knit ever since. 

As their friendship naturally blossomed, so did the idea of penning a book.  

After a chance encounter, Peter met best friend Deb - and the two have gone on to pen 'Slow Puncture'

After a chance encounter, Peter met best friend Deb - and the two have gone on to pen 'Slow Puncture', a book through the lens of someone living with dementia - Credit: Charlotte Bond

Last year, Deb, 60, helped Peter write ‘Slow Puncture’, in which he explains what life is like with early onset dementia, with Deb looking at her own life through the lens of Peter’s condition.  

“I never intended to write a book,” he explains. “But Deb started to record what I was saying, as nine times out of 10, I’d forget what I’d said. We put it all together, and then it was suggested maybe we should put it into a book, as a different take on the sort of dementia literature available. And that’s how it evolved.” 

Deb would take her notes and type them up, adding in her own thoughts along the way.  

“The book has two separate threads in it,” she explains. “There's me writing as Peter, and then me writing as myself, and how my understanding of his dementia changes when I hear it from his side. 

“I think from my perspective, the point of the book is to show all of the positive things that someone diagnosed with dementia can, and still will, achieve. Obviously it’s a pretty depressing subject, but Peter has done so much since his diagnosis that I wanted it to be written down, so people can see you can live well with dementia.” 

Another core focus of the book is the friendship between the duo – with Peter supporting Deb as much as she supports him.  

“Even though Peter knows me, he can’t remember stuff about me, but we’ve still got a deep friendship that I wanted to explore within the book. And it’s a reciprocal relationship that I wanted to convey. For example, I can’t mend a puncture or do anything mechanical, but Peter can so he does all of that for me when we go out on bike rides.” 

Teresa, Peter and Deb with a penny farthing bike

Teresa, Peter and Deb with a penny farthing bike - Credit: Peter Berry

Alongside releasing a book, Peter also spends his time raising money for dementia charities by embarking on a number of bike rides across the country.  

An avid cyclist since the 1970s, Peter has raised around £20,000 following his diagnosis – and shows no signs of stopping just yet. 

“When I was first diagnosed, I thought if I went cycling I could use it as a tool to help not only myself but also others.” 

In the six years since being told he has dementia, Peter has cycled from Wales to Aldeburgh in a week, and across five counties on a penny farthing – which he has just recently got tattooed on his body.

“Just the other day we cycled back from London, and we’ve got a few more exciting rides coming up next year too,” he says. 

“Cycling helps Peter escape his dementia monster. It gives him freedom and rekindles old memories. When we’re riding around the Suffolk countryside, he’ll often remember old forests he’d work in back when he was working in timber. It’s a nice way of him having a bit of nostalgia,” adds Deb.  

Peter's penny farthing tattoo, to commemorate one of his fundraising endeavours

Peter's penny farthing tattoo, to commemorate one of his fundraising endeavours - Credit: Peter Berry

With World Alzheimer’s Day coming up on Tuesday, September 21, both Peter and Deb hope his journey will change the public’s perception of what life is like with dementia – and that he is ‘living with dementia’, rather than ‘suffering’ from it.  

“My family and I went through a time of depression and uncertainty when I was diagnosed - but I came to realise that I wanted to show others going through the same journey that you can live with this condition.  

“Life isn’t over, it’s just different. I want to prove that a normal guy like me can rise above the darkness and depression that this condition can give to people, and shine a little bit of light on it.” 

‘Slow Puncture’ is published by The Book Guild and available is from Amazon. 

To follow Peter and his journey with dementia, visit his website.

What are the symptoms of dementia?  

Different types of dementia can affect people differently, but there are a number of common early symptoms. These include:  

  • Memory loss 

  • Difficulty concentrating 

  • Mood changes 

  • Struggling to follow conversation or find the right word when talking 

  • Being confused about time and place  

  • Finding it difficult to carry out daily tasks 

If you are concerned about any symptoms like these, either in yourself or a loved one, you should speak to your GP.

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