An interview with Matt Eagles from Parky Life on July 17, 2023 by George Ackerman, Ph.D, J.D.
Biography
Photographer, activist, tower climber and all–round inspirer. Matt’s incredible positivity and near-constant smile always wins out over his Parkinson’s.
What is Parkylife and how did it come about? Who is it for?
Travelling from London on the train one evening I saw a guy twitching and writhing about. The more he tried to hide it the worse it got. I said, “Don’t worry, I know exactly how you feel. I do the same, I have Parkinson’s. Strangely his shakes began to subside – it was almost as if a huge weight had been lifted from his shoulders. I smiled at him and said, “Parkinson’s isn’t the end of the world, you can turn potentially awkward situations to your advantage you know.”
All the way back home I was thinking how terrible that moment of diagnosis must have been for him and how frightened he looked on the train. I wondered if we could help him, and others see Parkinson’s in a different light. Of course, Parkinson’s is a scary disease to be diagnosed with. But I know there is a whole community of Parky people who manage the disease by looking on the bright side of their symptoms. I have found ways to work with my quirks, and unexpected body movements, and I have to laugh at myself most days.
After a chat with a creative team that I work with here at Havas Lynx, Parkylife was born.
What do you hope it will achieve?
Parkylife brings together all the wonderful stories, hacks and perks from Parky people, and highlights the inspiring folk who have achieved great things despite their diagnosis. Ultimately, we want to reach every single person living with Parkinson’s and help them overcome symptoms, feel less isolated and feel happier.
The core of the idea is to give Parky people a boost if they feel low or isolated. When Parky’s getting you down, we’re here to pick you up. And that’s why as well as creating an online platform, we created a tangible, tactile pack of positivity to make the whole idea even more accessible. It’s a permanent and physical reminder that you’re not alone and there are plenty of people in the same boat as you. And we just loved the idea that if you are having an off day, you can instantly just dive in and choose a card to give you a lift. It’s a bit like always having a support buddy at your side.
How many people have taken part/submitted so far? How many are you hoping to receive by the end of this year?
The original aim was to get 52 submissions to create a pack of cards – which we achieved. But the stories hacks and tips are continuing to come in, and that shows us that Parkylife is working.
What has been the most popular type of submission to date, and which is your favorite?
We’ve received a lot of great tips; the Parky community seem to have a great sense of humor and a brilliant way of looking at life. And that makes it hard to pick a favorite submission. But I do love the story from Mike Tindall about the late, great Tom Isaacs who really epitomizes everything Parkylife stands for. The two guys were playing golf, Tom played a beautiful shot that went straight in the hole. Mike turned around to give Tom a high five, but he’d disappeared. Then a bush nearby shook, and Tom came bounding out of the middle. He threw his hands in the air and said, ‘sorry about that I decided to celebrate with a double backward roll down this hill.’ Just brilliant – that’s how Tom lived his life.
How is the project funded?
Currently there is no official funding, but we are looking for support and sponsors. You see, this entire project has been created by the goodwill of the Havas Lynx creative team, and with support from the wider creative community. We saw a need for Parkylife, and we all worked in our spare time to bring the idea to life.
The team had great creative contacts and told their favorite illustrators about the project. The response was fantastic with artists from all over the UK offering to donate a unique illustration for each insight free of charge. It was an incredible collaboration and we’ve been bowled over by the generosity of everyone who has helped. We wanted everything about Parkylife to truly represent the Parky people we were talking to. So, we are delighted with the bright, optimistic, quirky imagery – we hope it leaves everyone smiling.
Diversity and perceptions of Parkinson’s – while we know people of all genders, races and ages can be affected, Parkinson’s is often linked to the Google image of an elderly, white, man. To what extent do you think the Parkylife stories and illustrations could play a role in changing this perception?
Parkylife is all about changing perceptions of Parkinson’s. It’s astonishing to see that if you Google ‘Parkinson’s’ right now, you are faced with row upon row of images of grey-haired old men in cardigans. This is not only a huge misrepresentation of the Parky population, but it’s also needlessly negative. No wonder so many people plummet into depression after diagnosis.
The fact is, Parkinson’s can affect men and women of all ages, and all walks of life, from teenagers, to mums, to celebrities and CEOs. And many of these people not only continue to live a normal life and go on to achieve great things. We heard lots of inspiring stories and wanted to share them all, inspire those who have been diagnosed and let them know that although Parkinson’s does change your life, it doesn’t stop you finding joy in it. In doing this we hope to shake off stigmas, and help the world see that there’s more to Parkinson’s that just a shaky old man with wrinkly, wobbly hands.
What are your plans to grow Parkylife in the future?
Quite simply we hope Parkylife can continue to grow and support those with Parkinson’s. We want it to become the go-to place for all people with Parkinson’s people to feel inspired, uplifted, meet new people, and share their own stories and tips. We’d love anyone with Parkinson’s, and also carers and HCPs to visit parkylife.com, parkylife_official on Instagram or @PKYLIFE on Twitter to share their insights and stories, so that we can keep adding to our Perks, Hacks, Stories and Peeps, we want to make this platform a rich and extremely valuable hub of Parky positivity.
How can someone get in touch? What is your website?
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
My top tips for living with a chronic neurological degenerative disease a – never ever be embarrassed about going out and showing your symptoms in public. It’s not a weakness to show vulnerability, it’s a strength. Never be afraid to ask for help. Be bold, be positive, be you!
Positivity in adversity
My name is Matt.
I am a positivity activist.
I have Parkinson’s disease.
Not that unusual: I’m middle aged, I’m a white male – the absolute stereotypical Parky man according to Dr Google.
However, being diagnosed with this chronic neurological degenerative disease as a young boy of 7 most definitely isn’t.
I do consider myself to be very lucky though, I cannot remember NOT having Parkinson’s so everything I have managed to achieve, I have done so despite it. I have nothing to compare my life with, it has been ever-present in my life.
The fact is I didn’t choose Parkinson’s, rather it chose me.
Ideally, I wanted to be the next Jacques Yves Cousteau and sail the seas looking after marine life, but circumstances conspired against me. It’s a double blow really as I’m a lifelong West Ham United fan and that hasn’t been easy either.
I am now in a unique position to be able to pass on my experience and knowledge not only of living with Parkinson’s but also the communication difficulties people living with Parkinson’s face daily.
I like to believe I will change the way you can live with a chronic neurological illness by promoting positivity while not forgetting the seriousness of the condition.
Parkinson’s disease can and indeed does control every aspect of my daily life from getting up in the morning to go for a wee, staggering to the bathroom and trying not to slip over while having a shower to falling off the bed while getting dressed. It’s not very dignified but amusing to watch, according to my wife, and that’s how the day continues until I go to bed at night.
I had deep brain stimulation (DBS) surgery** in September 2006. Essentially, it’s like having a brain pacemaker fitted. After that I became more and more involved in raising awareness of Parkinson’s, particularly in younger people and this in turn led to numerous media opportunities through Parkinson’s UK and their press office and the Cure Parkinson’s Trust.
Beginning with BBC Northwest Tonight, and local radio interviews, my portfolio expanded to national TV appearances, interviews in the Mirror, Express, Sun and The Independent, The Times and radio interviews. Last year I even spoke in Lambeth Palace Gardens, the private residence of the Archbishop of Canterbury.
I now work for the healthcare communications agency Havas Lynx Group as Head of Patient Voice where I ensure patients’ worries and concerns are heard and subsequently catered for in patient communications developed by pharmaceutical companies.
My advocacy work spans the globe having spoken at events hosted in Japan, Australia, USA, to conferences and podcasts in Bulgaria , Belgium , Denmark , Germany , Spain, South Africa and Switzerland. This obviously includes the United Kingdom too where I have spoken at a Government Science Advisory Committee meeting and written an article for Science in Parliament Magazine for the need to invest in the future of Neuroscience. In 2020 I was awarded the British Neuroscience Association Award for Public Engagement of Neuroscience and was shortlisted in the National Diversity Awards as Positive Role Model – Disability
I am super proud of what I do and the fact I can help others cope with what life has thrown at them. Communication and having a voice in healthcare is vital if you are to have access to the most appropriate treatments and care you can. Taking responsibility and being proactive rather than reactive in the way you view your personal health is vital to your own longevity and happiness.
Communicating effectively with your doctor is key. If you struggle to tell the whole story, then your treatment may be compromised. A doctor can only treat what he can diagnose or see and there is rarely a scenario however bad you may perceive it to be that a doctor hasn’t heard before being as open as you possibly can.
*Dyskinesia – uncontrolled, involuntary movement that may occur with long-term use of levodopa, a treatment for Parkinson’s disease.
** Deep brain stimulation is a type of surgery used to treat Parkinson’s.