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Parkinson’s and the Importance of Voice – Matt Eagles

Matt Eagles is a public speaker, advocate for the recognition of young-onset Parkinson’s and founder of ParkyLife – a website, a pack of cards, an Instagram and a Twitter account dedicated to better illustrating what life is like with Parkinson’s.

 But then you might know about him already, such is his engagement with the Parkinson’s community. Having been diagnosed with Parkinson’s at the remarkably young age of 7, he’s had plenty of time to accumulate reams of stories, anecdotes and tips about Parksinon’s and the brighter sides of living with the condition.

He has now set about sharing as much of this information as possible in order to spread a more positive message about what he thinks is an under-discussed and misrepresented condition. Talking with Matt, we discussed the importance of communication when living with Parkinson’s and how he’s utilised his voice – from talking openly with friends and even strangers about Parkinson’s to engaging with the wider community online to giving keynote speeches at prominent events.

 

Telling Tales

As we talked to Matt, it quickly became clear how much of a natural storyteller he is. He’s an incredibly cheerful and likeable person with an infectious grin and a hair-trigger laugh that draws you into all the strange tangents he goes off on, which mostly relate to the incredible people he’s met or recount his many sporting adventures. 

Matt’s relationship with his voice began during his youth when, at the behest of his snooty mother (his words!), he attended elocution lessons to “deal with” his strong north-western accent. Through this, he began learning poetry and giving public recitals at local speech and drama festivals. Despite a lopsided appearance and having to sit while giving his recitals due to the balance issues he suffered even at this young age, he was very successful and proudly recalls winning a trophy for his efforts at the age of 8. In hindsight, Matt thinks he owes a great deal of his talent with public speaking today to this tutelage and encouragement as a youngster, and is thankful for being practically forced to do it by his mother!

However, as Matt entered his twenties his speech, previously unaffected by Parkinson’s began to weaken. It sometimes became slurred due to his medication, making him sound drunk, especially when he was talking to someone on the phone and couldn’t visually show otherwise. “It was extremely frustrating , particularly when I knew I hadn’t even had anything alcoholic to drink but had just gone down to the pub to watch football.” Incidentally, the pub seems to be the setting for a number of his stories, perhaps because his propensity for approaching strangers and striking up conversation was more acceptable here. He even exercised his talent for public speaking here, running a weekly pub quiz that was popular enough with the punters to persist for 13 years.

While Matt’s increasingly wobbly and sore-throat-sounding voice was accepted at the pub, it was much more detrimental to his work as a tele-salesman. The impact was so severe that he began receiving biannual botox injections in his throat to treat what was diagnosed as laryngeal dystonia. Each injection helped, but only temporarily. After suffering 14 years of this, a combination of leaving telesales to rest his voice, speech therapy and deep brain stimulation thankfully improved the laryngeal dystonia. With his voice restored to its former smooth-sounding glory, Matt stopped the injections in 2010 and has not needed them since. 

It is perhaps these difficulties with his voice that have led Matt to value its importance so deeply, and to work so tirelessly to make sure it is heard today.

 

Shared Experience 

Matt set up Parky Life – part art project, part awareness campaign, part memoir, part forum – as a platform for shared experience, using the power of storytelling to demystify and spread positivity about Parkinson’s to people in and out of the Parkinson’s community. It’s taken the form of what you might imagine a curated Matt Eagles stream of consciousness to look like; a collection of funny, inspiring and heartwarming anecdotes accompanied by beautiful illustrations. Each illustration, Matt says, is made by a different artist in order to reflect how different Parkinson’s can be for different people. 

One of the stories that first inspired Parky Life happened while Matt was waiting for a train at Euston Station…

“I was sitting in the waiting room and spotted another guy who was waving around and wobbling a bit so it was obvious to me that he was dyskinetic. He was looking down, not making eye contact with anyone and his body language was really closed off. His wife was acting the same. To be frank they looked ashamed. So me being me, I sort of twitched and danced my way over and politely said ‘I hope you don’t mind me asking but you seem to be having the same sort of dyskinesia I’m having – you don’t by any chance have Parkinson’s do you?’ He slowly lifted his head and said ‘Oh… well yes, I have” and it turned out I was actually the first person he’d actually ever confessed that he had Parkinson’s to. So I said “Well don’t worry it’s not the end of the world, there are plenty of worse things that can happen” and began having a really nice chat with them. He and his wife slowly started lighting up and becoming more and more animated, smiles breaking out on both their faces. It turned out he was so ashamed of having Parkinson’s because he thought it was this old man’s disease, and so this galvanised me into action – I thought, well we’ve got to do something about this.

I deal with my Parkinson’s by telling anecdotes – I share them with people and it helps me cope. I recounted one such story to an immensely talented illustrator friend of mine and we hatched a plan to create some kind of kids book or something where we collected funny stories from all sorts of different people with Parkinson’s.”

This evolved into the pack of Parky Cards, which includes tips and hacks for living with Parkinson’s, funny stories illustrating the lighter side of the condition, and profiles on famous people with Parkinson’s such as Billy Connolly to shatter the illusion of it being the disease of the old, doddery, house-bound man.

 

Changing Perceptions

A rare case where Matt chose to remain non-verbal was during his trips to Queen’s Square [medical research centre] in London as a teenager. Here, neurologists and movement experts would gather to observe Matt’s symptoms, so unusual for a boy of his age. “I remember feeling quite smug actually, as I watched all these doctor’s try to figure out what was going on with me. Meanwhile I sat there quietly knowing I was the greatest expert in the room when it came to my symptoms”. Though he wasn’t speaking, Matt was still using his voice. As such a young person with Parkinson’s, he was an example of a greatly underrepresented group within people with Parkinson’s. It is sadly the case that doctors are generally much less willing or even refuse to diagnose a younger person with Parkinson’s, making it difficult for those with young-onset 

A couple of alternative depictions of people with Parkinson’s Matt would love to see on the 

Wikipedia page. Left: Matt Eagles himself  Right: Sue Wylie, more info here

Parkinson’s to get the help they need. By communicating with these doctors, he was contributing to better understanding of YOPD. This remains an issue close to Matt’s heart as he persists in trying to reverse the preconception that Parkinson’s is exclusively a disease of the elderly. One of Matt’s missions is to change the image on the Wikipedia page for Parkinson’s, currently a 19th century illustration of exactly the kind of “doddery man in his slippers” he thinks isn’t representative of people with Parkinson’s. This image is also the first one returned when you Google Parkinson’s. To this end, he’s been in contact with the head of Wikipedia himself, Jimmy Wales, and is now working with him to get it changed. “If you’re a young lady with who’s diagnosed, for example, how can you possibly align yourself with this image of Parkinson’s? We need to change what Parkinson’s looks like to the rest of the world”.

Matt wants to encourage and facilitate the sharing of Parkinson’s stories to increase awareness of the diversity of people with Parkinson’s. He imagines a situation where everyone can comfortably and openly discuss the condition, whether or not they have it, and feel able to ask for or offer help without inhibition. ‘

“Young kids are the best” Matt exclaims, launching into another story; “they just stare at you. Other people get embarrassed when they see me staggering around in the street, so i just say ‘Don’t worry it’s alright, I’ve got Parkinson’s’ and then if they offer to help, great! Either I’ll say ‘yes thank you very much’ if I need it, or if not, ‘That’s very kind of you but no thanks’. You’ve got to factor in that some people, wherever you go are just ignorant. So there was a case a couple of years ago while I was out walking my dog with my wife and there were a few local lads on BMX bikes hanging around the shops. My walking wasn’t great at the time and I noticed they were just looking at me, so I went up and asked, ‘Are you alright lads?’. One, who had a bit of a reputation around my estate as a trouble maker bluntly asked ‘What’s wrong with you mate?’. So I sort of went ‘Oh it’s okay I’ve just got Parkinson’s. It means I’ve got trouble walking so I have to stagger a bit’. And once  I engaged with him and he got an answer to his question, he said ‘Okay mate I hope you get better soon!’ and they all rode off! 

So sometimes you’ve got to be a little bit brave, but you’ll find that everybody’s got compassion and kindness in them. I’ve even known blokes who’ve been in prison for all sorts of stuff who always hold the door for me and ask how I’m doing. This young lad always says hi to me now whenever we see each other around the estate. If you know where you stand with someone, you see eye to eye and understand each other’s situation, then that door to kindness is opened.”

Using Your Voice to Own Your Parkinson’s 

Matt’s a big believer in striving to own your Parkinson’s rather than letting it own you. “If you can own it, own your own personality, own your space, then people will embrace it and offer you help if you need it”. He thinks people with Parkinson’s worry too much about how people will perceive them when they find out. Part of this is sadly due to global perception of Parkinson’s and disability in general, but that, Matt believes, that shouldn’t define you, and if that’s all someone can see about you then they’re not worth your time! “Having Parkinson’s is not a catastrophe and it’s certainly nothing to be ashamed of. Embracing it is so much better than letting it take over you. Whatever your issue, it’s still you underneath, whatever the condition” 

As with so much, when it comes to managing Parksinon’s effectively, it’s a matter of attitude. Matt spent 45 years with Parkinson’s and has had his fair share of ups and downs with it, but he still wholeheartedly believes that to talk about it, with as many people as possible, is the best thing you can do to keep on top of your Parkinson’s. Engaging with local charities, Parkinson’s-forward classes and the online community has been so beneficial for so many of the people we’ve talked to.

 It helps you come to terms with the condition, share tips and tricks for symptom management and perhaps most importantly, reminds you that you’re not alone! Not only will this benefit you, but contributing to a more open discussion of Parkinson’s will help break the global misconceptions of the condition and actively help people diagnosed in the future. Finally, don’t be afraid to extend your voice beyond the Parkinson’s community. As Matt’s stories show, people are very understanding if you explain the situation to them. Any aversion, hostility or judgement you might perceive or imagine them to have is usually due to ignorance on their part. Don’t be scared to educate these people, especially friends and family – the more who understand Parkinson’s the better! 

Thanks again to Matt for talking with us, and for all his incredible ongoing work in the Parkinson’s community. Check out Parky Life for even more of his inspiring stories here.

 

Author Alex Dallman-Porter

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