‘Life’s Not Over—Just Different’ With Early-Onset Alzheimer’s

Peter Berry, a passionate cyclist from Suffolk, England, has spent the past decade redefining what it means to live with Alzheimer’s. After his diagnosis at 50, he began taking on physical challenges to raise awareness about the disease, including cycling 100 miles on a penny farthing in a single day. 

Berry’s passion for cycling eventually led him to meet Deb Bunt, a fellow cyclist who became his close friend and writing partner. Together, they co-authored Slow Puncture: Living Well with Dementia, and their second book, Patching the Puncture: Continuing to Live Well With Dementia, will be published early next year. 

In this conversation with Being Patient’s founder Deborah Kan, Berry and Bunt share how their friendship has evolved alongside Berry’s condition. They discuss memory loss, daily changes, and the power of physical activity and social connection. 

Being Patient: How are you doing today?

Peter Berry: I’m pretty much okay. Physically I’m all right. I feel well. I feel happy and content. I know that things are changing. My memory is changing, and things are not as easy as they were, but we continue to find solutions. It’s not about the problem, it’s about the solutions. It seems to me as though there are many solutions for one problem. 

Our story at this present time is not ending, it’s just evolving into another story. I’ve got to be positive about it all.

Being Patient: You and Deb have an extraordinary friendship. And I want to talk a little bit about that, because I think you met with your shared love of cycling. Is that correct?

Deb Bunt: I moved up to Suffolk seven years ago with my husband. We didn’t know anybody up here. Peter was one of the first people I met in a cycling shop. It’s a very friendly place in Suffolk, and he said, “Maybe I can show you some cycling routes,” and we started cycling together.

Being Patient: Peter, at that time when you met Deb, had you already been diagnosed with Alzheimer’s?

Berry: Yes, I had. I had just completed one of my many challenges. I had cycled across Great Britain from Wales back to where we live. I’d gone right across the center of Great Britain.

I hadn’t been diagnosed [for] that long, but I was starting to raise awareness, and I probably wasn’t doing very well on my own. I was doing it in a very ad hoc way, by just cycling and trying to show people that life’s not over — it’s just different. If I can do things, you can do your things as well. But I don’t think Deb really knew at that time, did you?

Bunt: I didn’t really have an understanding of young-onset Alzheimer’s. For me, Alzheimer’s was old people. I didn’t know younger people could get it. And he is as he is now: so fluent, funny, and articulate.

I didn’t really believe he had Alzheimer’s until we said goodbye. I walked around the town, and a couple of minutes later, I saw him again and picked up the conversation — and it was obvious he had no idea who I was. That was my first clue that he actually did have a memory problem.

Being Patient: One of the reasons why you inspired me so much, Peter, is because you had said, “When I get on my bicycle, I leave Alzheimer’s behind.” Is that still true today? Are you still cycling on a daily basis?

Berry: ​​Yes, [we are] still cycling as much as we can. I don’t drive, so my main mode of transport is cycling, which is a great thing, because you have to get on the bike, you have to go somewhere. I can go in the car with my wife, but I prefer to have a level of independence. That’s what the bicycle gives me — it frees me from the shackles of dementia.

I strongly believe that being physically active is one of the best pills for depression, for keeping yourself mentally active. If you sit inside a room, you’re going to feel down and depressed. Once you get out with the wind in your face, it somehow makes you feel alive. The bicycle is my compass, and it gives me direction. And that’s what I need.

“That’s what the bicycle gives me — it frees me from the shackles of dementia.”

Being Patient: Earlier you said, “I think my memory continues to get worse.” Tell me, from your perspective, what does that mean exactly?

Berry: I don’t know what I’ve done today at all. I have no idea. I don’t know where I’ve been. I don’t know what I’ve eaten. I have absolutely no idea. So you become very dependent on others. It’s accepting that dependence which is the key to the condition progressing. It’s going to progress. I cannot stop that, but what I can stop is me worrying about the progression. If other people can cater to my ongoing needs and how my abilities change, then that means I can still continue to thrive and move forward and do the things that I want.

I’ve said it many times before: Dementia is an extremely complex condition. But around that cloud of complex stuff is a sort of veil of simplicity, and if we tap into that simplicity part, it makes the complicated part a lot less complicated.

If Deb sends me a message or rings me up, “I’ll meet you in the local town in 15 minutes,” I tend to forget within three miles where I’m going. Now, that’s a bit complicated. But we made little cards: “Meet Deb at the Black Dog Deli.” I put it on the front of my bicycle. It then becomes uncomplicated. That simple act of a laminated card uncomplicates dementia. 

Being Patient: Deb, you’ve been chronicling Peter’s journey. You’ve even written books on him. Tell me a little bit from your perspective about how you do that and what your vantage point is watching you coexist with Peter through his journey.

Bunt: I think the first thing is I have to accept that it is a friendship lived in the moment. Once I’ve accepted Peter doesn’t know what we’ve done 10 minutes ago [or] half an hour ago — once I’ve accepted he’s not going to remember that — I just enjoy the friendship for what it is.

I was listening to some of the things Peter says and I just thought, there’s a book here. I want to share Peter’s thoughts before they get lost. I’ve always wanted to write a book, and he was my muse. He was a perfect subject.

The first book, Slow Puncture, is also about my understanding of Alzheimer’s and dementia, and my understanding of myself, as well as the things that Peter has achieved. It puts my own kind of problems in perspective.

We’ve just done our second book, which will be published in February, which is a bit of a look back over the last five years — not just how Peter has changed and how we’ve accommodated the changes, but how me as an individual has changed. My confidence levels have changed. The things I can do have changed. I would not be a writer if it were not for my friendship with Peter.

Being Patient: Tell me a little bit about what you’re noticing. They always say the vantage point of the person with the diagnosis versus the vantage point of a caregiver can be different. How many years have you been friends for?

Bunt: Just over seven years. The biggest change is Peter’s memory. His cycling abilities, his abilities to fix things — that hasn’t changed. Peter gets tired a bit quicker, and it’s about me spotting the signs. But it is his short-term memory. That’s what I have to accept, and that’s what I have to adjust to with my expectations. And that’s what we deal with. We don’t stop because Peter can’t remember what we’re meant to be doing. We find a way around it. Peter is all for solution finding, which I never was. And I am now.

Being Patient: Do you still ride a penny farthing?

Berry: Yes, I do. I still ride one reasonably regularly. Last year I did 100 miles in one day. We left our village in the morning, went 50 miles up the coast, turned around and did 50 miles back. Never again.

Being Patient: I take it that dementia isn’t really impacting your balance?

Berry: I first started riding penny farthings when I was about 15. I’ve ridden them a good part of my life. It’s just like riding a bicycle. You don’t seem to forget it. It seems to me sitting up there is as normal as sitting on a normal bike. I don’t find it any more difficult.

I think if I tried to learn now, if I had never ridden one, that might be a different story. But it’s very similar to somebody with dementia who has played the piano for a lot of their lives. They’ll sit down and they’ll play that piano perfectly, even though they can’t remember what happened 10 minutes ago. Somehow it’s etched into our brains about what to do, as though it’s some sort of muscle memory or something like that.

Being Patient: Deb, tell me a little bit about both books that you wrote. You told us about the one you’re currently writing. Tell us about the first book.

Bunt: The first book is called Slow Puncture: Living Well with Dementia, and it charts my first year of knowing Peter. It combines the challenges and the diagnosis that he had and the depression that followed, and his determination to live well. And as I said, my own understanding of what Alzheimer’s was. Given that I had just retired from paid work and moved up to Suffolk to retire, I didn’t know what I was going to do with my life. I met this amazing man, and I’d always wanted to be a writer, so I wrote.

That book is Peter’s thoughts five years ago, and the new book is Peter’s thoughts now. There are many, many similarities, but there’s also an acceptance that things have changed.

Being Patient:  We got a comment from one of our viewers who’s watching live. Pat says, “Thank you, Peter, for your inspirational message. I am going to try to put your wonderful approach to having AD into my own journey. You really have prompted me to be more positive and more accepting of my situation. I look forward to following your progress.” I mean, just changing one person’s attitude has an enormous impact on how they live with Alzheimer’s, and that’s your superpower. 

Berry: At my darkest time, that was one of the things that I really wanted to strive for. I had it in my head that if I helped a handful of people, then that would be a good thing. That would give me a sense of purpose, a sense of worth, which we all need in life. It wasn’t just something that I needed — I had to have it in order to live.

It works both ways, because people like Pat, who just shared that with us — yes, I’ve helped her. But also she’s helped me by me knowing that I’ve helped her. So that works both ways. And that’s a wonderful thing.

Dementia takes so much from us. What could we take from it? That’s what it’s all about. I’m just so pleased that we are able to help people.

“Dementia takes so much from us. What could we take from it?”

Being Patient: I think the other thing you two highlight is the importance of social engagement. You’re constantly engaging with one another, which is so important for the brain, with or without dementia. 

Bunt: Yesterday, Peter said a lion can survive in the wild on its own, but in a pride of lions, they thrive. I’ve never heard him say that before, which is quite unusual, because I know mostly what he’s going to say. I thought that was really profound, and it’s true. We thrive with social interaction.

Berry: We need to talk to people. We just need to see different things. 

My father lived for 25 years with Alzheimer’s. It’s only recently that I’ve understood why that was. It was because I never treated him as “father with dementia.” I just treated him as Father. He still was an active part of the business. I still asked his opinion. I still did everything with him. Yes, we changed as his condition progressed, but he had that sense of worth that he was still important to other people. That made him important to himself. 

He was 93 when he died. He only moved forward because I allowed him to move forward, because I wanted him to. I entered his world. I didn’t expect him to enter mine. 

We must enter other people’s worlds, regardless of dementia, to see really what it’s like — to accept what’s going on.