CM – « Life is not over with dementia, it’s just different »


September marks World Alzheimer’s Month, a month dedicated to raising awareness about dementia and challenging the stigma associated with the disease.

And a man from Suffolk made it his mission To show people that being diagnosed with dementia doesn’t mean life is going to end.

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 greatest passions – cycling.

However, his life was turned upside down only a few years ago when early onset dementia at the age of 50 was diagnosed.

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

« Until then, I always had a good memory, especially when it came to work. But over time that has changed a lot and I’ve forgotten more and more. ”

It took Peter three years of hospital visits and tests to get to the bottom of his sudden memory loss – the subsequent diagnosis was a shock.

“At first we didn’t think that it had anything to do with dementia. At first we were worried it was a brain tumor or something like that.

“Strangely enough, when I was diagnosed with dementia for the first time, I was quite relieved because it wasn’t what I originally thought. But it quickly became clear that it wasn’t a good thing, however you look at it. ”

Dementia is a syndrome that is associated with persistent decline in brain function. Often associated with memory loss, it causes difficulties in other areas such as speed of thinking, mental sharpness, mood, movement, judgment, and language.

One of the most common forms of dementia is Alzheimer’s disease. In addition to vascular dementia, this makes up the majority of cases.

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

« When he was diagnosed, I took over the family’s wood business from him and ran it for about 25 years before I was diagnosed myself. » < When you are told that you have something as serious as dementia, it leads to many sudden life changes. As Peter explains, the turmoil he and his family went through after the news was devastating.

“I think we were just trying to deal with it at first, especially since people of my age group don’t have that much information about dementia gave. We were just as guilty as anyone else if we thought it was just something that only affects the older generation. ”Furthermore, Peter had concerns about his business and what the future held for him and his family .

« We were wondering if we were going to tell people, would they look at me differently and would business suffer if they found out about my diagnosis? We found it very difficult to deal with, especially since a condition like dementia can be stigmatized. What followed was a pretty depressing time, « he says.

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

The The two were linked one day after a chance encounter in a local bike shop and have been closely linked ever since.

After a chance encounter, Peter met his best friend Deb – and the two wrote “Slow Puncture”, a book from the perspective of a person suffering from 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 recording what I said because nine times out of ten I forgot what I said. We put it all together and then it was suggested that maybe it be put in a book as a different take on the dementia literature available. And that’s how it went. « 

Deb took her notes and typed them in as she added her own thoughts.

 » The book has two separate threads, « she explains. « I write as Peter and then I write as myself and how my understanding of his dementia changes when I hear it from his side.

 » I think, from my point of view, the book is about all of them Pointing out positive things that someone diagnosed with dementia can and will achieve. It’s a pretty depressing subject, of course, but Peter has done so much since he was diagnosed that I wanted it to be written down so people could see that dementia is a good one. ”

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

« Although Peter knows me, he can’t remember anything about me, but we still have a deep friendship that I explore in the book wanted to. And it’s a two-way relationship that I wanted to convey. For example, I can’t fix a flat tire or do anything mechanical, but Peter can, so he does it all for me when we ride a bike. ”

In addition to publishing a book, Peter also spends his time making money for dementia -Gathering charities by taking a number of bike rides around the country.

Peter has been an avid cyclist since the 1970s and has raised around £ 20,000 after his diagnosis – and is still showing no signs of stopping .

« When I was first diagnosed, I thought if I could ride my bike I could use it as a tool to help not only myself but others as well. »

In the six Years since he was told he had dementia, Peter drove from Wales to Aldeburgh in a week and traversed five counties on a penny farthing – which he recently got tattooed on his body.

« Ger Goodbye the other day we came back from London by bike, and next year there are still some exciting rides to do, « he says.

 » Cycling helps Peter escape his dementia monster. It gives him freedom and lets old memories come back to life. As we ride through the Suffolk countryside he will often remember ancient forests he worked in back when he was working in the wood. It’s a nice way to have a bit of nostalgia, « adds Deb.

With World Alzheimer’s Day approaching Tuesday, September 21, both Peter and Deb hope his journey will increase the awareness of the world Will change the public about living with dementia – and that he “lives with dementia” instead of “suffering” from it.

“My family and I went through a period of depression and insecurity when I was diagnosed – but I became clear that I wanted to show others who are following the same path that you can live with this disease.

« Life is not over, it is just different. I want to prove that a normal guy like me can rise above the darkness and depression this condition can give people and bring a little light into the darkness. ”

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

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

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