Parky Profiles: Matt Eagles

"I never believed anybody would love me...."

“Just about the most irrepressible, inspirational, invigorating person you could hope to meet,” is how I introduce the subject of our latest Parky Profile on the Movers and Shakers podcast. Most of us had met Matt Eagles before so knew what to expect of the man who arrived at the pub wearing a t-shirt bearing the slogan “I’m not pissed, I’ve got Parkys.” What I think none of us anticipated was quite how moved we would be by his story.

The irrepressible Matt Eagles

Matt was diagnosed with Parkinson’s at the age of 7 - yes, that is not a misprint - and is now in his mid-50s so has spent half a century battling against the physical and mental toll of living with a degenerative brain disease.

“It began with a frozen shoulder and a lack of balance,” he explains. He also appeared to be throwing himself on the floor a lot and both his parents and teachers thought he was just being a pesky little lad. After endless medical investigations, which included being amongst the first people in the UK to have an MRI scan, the doctors concluded that what he was facing was not a brain tumour, as they had first feared, but Parkinson’s.

This meant nothing to Matt:”I just wanted to be out playing with my friends. So it could have been called anything, it wouldn't have made a difference, because I didn't know anything about it.”

We ask him whether he was bullied at school and he says, no, not in the traditional way - but then he remembers the Latin teacher who called him “dead legs”. Still, he got through school and came to London to study business law.

By now he was walking with a stick and battling his way through the busy streets of the capital: “I was Mr. Unbreakable. I'd stagger down to get a number six bus from Hackney to Liverpool Street, then stagger from Liverpool Street to Moorgate . A couple of times, I ended up on the bonnet of a car, waving frantically and apologising to the driver, saying ‘it's okay, I've got Parkinson's. Please don't run me over.’”

He did his best to fit in, passing his driving test and offering to be the ‘designated driver’ on nights out with student friends. “Sometimes I'd be able to drive until about five minutes before I was scheduled to go, and then I'd have to contact them and say, sorry, guys, my legs are bad. I can't drive tonight. “ He would then get a lot of grumbles - nobody understood Parkinson’s - which he says was upsetting.

But worse, having got through his first year exams despite his increasing disability, the second year proved a step too far: “I was allowed a scribe and an extra hour. But if you try writing five essays in four hours, dictating to somebody who you've never met, whose writing you couldn't read - and I just lost my momentum completely.” He failed the exams and was told his quest to become a lawyer was over. Still, he managed to get work in telesales back home in Macclesfield.

He then built a decent career in the advertising industry, selling space in various publications for organisations like the British Chambers of Commerce. But 25 years in, Parkinson’s had another surprise for him in the form of something called laryngeal dystonia: “It basically makes you sound like you have permanent laryngitis, and being told you should be at home in bed and not at work every time you phone somebody up and ask them something gets a little bit tedious.” He ended up being made redundant, before making a new career in advocacy for Parkinson’s and for the wider disabled community.

These days Matt Eagles’ Parkinson’s is something you notice the moment he enters a room - in his voice and in his dyskinetic limbs, flailing around all over the place. But he says a while ago he took a vow of positivity. “I'm a great social animal. I feel quite comfortable walking into a group of people who I don't know going, ‘it's okay, it's okay. Don't worry, I've got Parkinson's.’ I might not know any people in that whole room to start off with, certainly by the end of the evening, they'll all know me.”

He admits that when he was younger he went through some dark times, lying on his bed punching himself in the face - people used to assume the black eyes were just the result of yet another fall. But there is one big reason for the positivity with which he now faces the world - he has found happiness in his personal life.

“I never believed anybody would love me,” Matt tells us. “I genuinely didn't think anyone would want to put up with somebody who lived with Parkinson's all their life and could potentially get quite poorly later in life.”

He had given up hope of ever having a serious relationship when in his early forties he met Viv on a Facebook dating app. “We just clicked,” he says. He was frank about his Parkinson’s from the start, and recently Matt and Viv celebrated their tenth wedding anniversary.

Gillian Lacey-Solymar asks Matt whether, after all these years, he has come to terms with his Parkinson’s:

“I think I have. I don't particularly look forward - I cope with each moment of each day, as it happens. I can't say - tomorrow I'll be able to do this. If I am, that's fantastic. But if I can't, it is how it is. “

We then discuss whether we have come to terms with our condition and, apart from Gillian, it is clear most of us have a way to go. But if anyone can inspire us to get on with our lives whatever Parkinson’s throws at us, it is Matt Eagles.