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Social media meandering opens the door to another opportunity

As a committed (obsessive?) social media surfer, I came across a Twitter account generated by Healthy Suffolk (@SCCPublicHealth). Curiosity led me to check out this link and this took me to The Together for Suffolk Group on Facebook which, in turn, connected me with Neel Mookherjee.

Neel - who turns out to be another Arsenal fan (by the by, but obviously quite important to me, particularly in terms of validating my meandering), asked if he could do a feature on Peter's story, the books and our friendship. Below is the post, lifted from Facebook.

Folks, I'm delighted to introduce you to Deb Bunt, a gifted author whose works on Dementia have touched the lives of many, instilling hope and strength. The profound connection she shares with Peter Berry, as they navigate the challenges of Dementia together, exemplifies the incredible power of human empathy. Their heart-warming journey reminds us of the transformative impact that compassion and friendship can have on individuals facing adversity..

Hi Deb could you introduce yourself and let us know a little bit about yourself? My husband and I moved to Suffolk five years ago from London – we were lucky enough to be able to take early retirement. I had been working in the youth offending service in a large London borough and was, in truth, a little disillusioned with my job. I have had a range of jobs – including working at the United Nations in New York for the Red Cross to working in the field of domestic violence in London right through to working with vulnerable children. I have two sons and three grandchildren. My big love – apart from my family of course! – is Arsenal Football Club. I have kept my season ticket and still attend matches and one day hope they can win the Champions League (well, I am a dreamer!). As well as enjoying cycling, theatre and football, my other big love is writing which leads us nicely to…

What inspired you to write this book on Peter’s Alzheimer's? When I first met Peter I had no idea that younger people could have Alzheimer’s. He was fifty at diagnosis. As our friendship grew and we started to cycle literally hundreds of miles together, I was able to listen to Peter expressing his thoughts on living with this devastating condition. His attitude, his positivity, his glass half full attitude impressed me. I had also just broken my shoulder during a bike ride and was a bit depressed but listening to Peter talk about dealing with his terminal diagnosis put things in perspective. I wanted to capture his thoughts and all of his fundraising ventures and his story finally sparked my creative juices, resulting in our book. We both wanted others to know that you could live well with dementia and that, with the right attitude and support, life was not over.

What’s been the highlight of your journey so far? So many – obviously, being published was a huge joy. But the way the book has captured the imagination of so many people, not just in the UK but in the US too has been wonderful. I suppose two highlights: being asked to talk at the Felixstowe Book Festival in June was massive and seeing the book in real book shops – both independent ones and Waterstones – gave me a huge buzz!

What advice would you give someone that has been diagnosed with Dementia? Focus on the positives, the things you CAN do. Enjoy each moment, do the things you want to do (within reason!). Keep relationships and friendships alive and kicking. Take the wins, there will be time enough for defeats.

Also importantly what advice would you give someone who is a carer for someone with Dementia? How are Peter’s family been coping? Peter is not at the stage when he needs a carer as such. He needs reminding to do certain things, like eat, drink and take medication. Teresa, Peter’s wife, found the initial diagnosis extremely difficult to deal with and, as Peter says, she still sees the things he can’t do whereas he might forget them. She suffers with dementia, he does not : he lives with it. There is a big difference between those two words – suffer and live. The advice would be don’t put off doing the things you enjoy. No one knows what the next day brings. Talk about things, be open and honest. There is no point hiding a diagnosis and people will understand if you tell them. Also, understand that some people will drift away from you, this is their problem and the fact that they don’t know what to say or do.

How important was exercise and cycling in particular helpful for Peter with his condition? When Peter cycles, he is Peter the cyclist, not Peter with dementia. Exercise takes him away from his condition, and the endorphins and feel good factor of exercise are of huge importance. Also, for Peter, who worked in virtually every woodland in Suffolk when he owned his timber company, cycling around the countryside rekindles memories which is extremely important for him. Cycling also enables Peter to be in charge – he fixes my bike and Teresa’s (his wife’s), he mends punctures, he advises us on how to cycle efficiently. Cycling is his independence as he can’t drive any more. Cycling gives him freedom to be Peter, the man. And don’t forget: Peter cycles on a penny farthing ,which always raises eyebrows!

What do you get personally get out of the friendship and the dementia advocacy? Peter talks about the importance of having a sense of purpose and this is true for us all - I now have a huge sense of purpose. He once said that he could ‘get to his garden gate but couldn’t push it open to access the meadows beyond…’ – I know I have pushed that gate open for him through this advocacy work. His message is so important. Our friendship is unusual as Peter can’t remember much about me (apart from one of my grandchildren lives in Suffolk and the fact I support Arsenal!) but the friendship is experienced in the moment, through emotions, not facts. It’s a friendship which I have never experienced.

How has the book been received and what have you been doing to promote it? The book is now on its 3rd re-print. We have had mainly positive reviews on Amazon and certainly the organisation in the US with which we are involved – AlzAuthors ( help to promote it overseas. AlzAuthors curate ‘the best books on Alzheimer’s’ and so that tells you something. The independent book shops here in Suffolk (Woodbridge Books and Dial Lane in particular) have been amazing. We are regular guests on BBC Radio Suffolk and this has helped to promote the book. More and more organisations are asking for us to talk and we will also be in London in November as speakers at a Dementia Summit. All of this work promotes, not only the book, but helps disseminate Peter’s message: “life is not over with a diagnosis of dementia, it’s just a little different.” Also I am very active on social media, linking in with other people and organisations and sharing views and tweets.

Is there a positive story related to the project that summarises everything you’ve been working for? I think the story of our friendship is the greatest gift to emerge from this story. I never would have been friends with Peter had it not been for his diagnosis and I never would have realised my dream to be a published writer (now for Arsenal to win the champions league – or maybe not!) Also the shift in my own confidence and sense of worth has come about because of Peter. And, of course, my ability to cycle miles and miles and miles….that’s all down to Peter and so my own physical and mental well-being has improved. At almost 62 years old, I feel strong and powerful and can easily cycle 100 miles in a day.

Looking forward what would you like to achieve with the project? More of the same – we are pretty well known in Suffolk, I’d like to extend some of our work across the UK and I would also like the book to be ready for its 4th reprint!

What’s been the hardest part to date and what do you need ideally to progress the project further? Keeping the momentum going can be hard. But an opportunity like this re-kindles my enthusiasm.

Would you say this story gives people hope especially if they’ve been diagnosed with early onset Dementia? I really hope so. Living well does not have to be about cycling thousands of miles but the message is transferable: it’s about making sure you still do the things you love and to take responsibility for your own health.

How do people buy the book and is there an audiobook version? “Slow Puncture, Living well with Dementia” (and our poetry book, “Walk with Me: Musings Through the Dementia Fog”) are both available via Amazon. Slow Puncture is published by The Book Guild so available via them, plus there are some signed copies in Woodbridge Books. Here’s the link on our website: Facebook: Peter - Deb (author) Deb (personal) Twitter: @PeterBe1130 @debbunt There is no audio version – but we would love to create one if you can help!

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