'Parkinson's made me a better person': Life with a brain pacemaker in your chest
Parkinson's needn't be a death sentence, says Matt Eagles, who was diagnosed aged eight. It just takes lots of patience – and a sense of humour
Matt Eagles is a local newspaper editor's dream. He writes weekly match reports on the local league fixtures for the Macclesfield Express, takes his own pictures, and does it all for the love of the game.
Aged 44, he lives with his fiancée, Viv, in a house in Cuddington, Cheshire, not far from where he grew up. Matt used to work in publishing and is now between jobs. Last year, he had the time of his life taking photographs at the London Olympics for ESPN.
Matt also has Parkinson's disease. In fact, he's had it nearly all his life.
Parkinson's often makes the headlines because of the celebrities who are diagnosed with it. It's a ruthlessly visible disease, and when someone in the public eye has it, the public knows.
In September, a new comedy aired on American TV screens. The Michael J Fox Show marks the prime-time return of the actor whose life changed so dramatically more than 20 years ago, when he was diagnosed with Parkinson's at the age of 30. The script has him playing a man living with the disease, and returning to work determined not to let it hold him back.
The show does something novel and risky with its subject matter – it makes fun of it. There are scenes where Fox's character has trouble answering the phone because of his twitching hands, and ends up accidentally calling the police. It's something Matt can relate to. "Parkinson's is difficult to live with," he says. "But I think it's made me a better person. I've certainly got a much better sense of humour. I laugh at myself quite a lot.
"The photography creates a lot of interest," Matt says. "Because, let's face it, people associate Parkinson's with shaking. It makes for some interesting shots, I can tell you."
Matt began to notice the symptoms when he was just eight, and it wasn't long before the doctors knew what was causing them. At the time, he was the youngest person in the UK to be diagnosed with Parkinson's – and, to the best of his knowledge, he still is.
Matt is uniquely placed to talk about the day-to-day burden of living with Parkinson's. He is also proof that the disease is no death sentence; that, despite the hardships, those with Parkinson's can still get on with normal, happy lives.
Parkinson's affects one in 500 people, or an estimated 127,000 people in the UK. It is caused by damage to a part of the brain called the substantia nigra, which leads to a reduction of the chemical dopamine, which plays a key role in controlling the body's movement. This is what leads to some of the condition's highly visible symptoms: involuntary shaking; muscle stiffness and slow movements.
The average age for symptoms to begin showing is 60. Only one in 20 cases develop in people under 50. To be diagnosed with Parkinson's at eight, like Matt was, is almost unheard of. "The first symptoms were lack of balance," he says. "I kept falling backwards when I tried to stand up. The headmaster at my school noticed that I just couldn't stand still in assembly and kept on falling back. If someone asked me to stand up, I'd have to stand at an angle, or have to lean forward. I've got a picture of me winning a trophy for a speech and drama competition, and I'm standing at an angle trying to balance properly."
It's still not known exactly what causes the damage that leads to Parkinson's. Doctors suspect some combination of genetic and environmental factors play a part. Matt was lucky in the sense that treatments for the disease were developing rapidly at the time of his diagnosis. He was one of the first to have an MRI scan on the NHS.
There are drugs that can control the symptoms. From the age of 10, Matt was prescribed Sinemet, then in his twenties switched to a drug called Co-beneldopa. The medication allowed him to indulge his passion, football, but it was never easy. "I was always the last to get picked at school," Matt says. "I always thought I wasn't as bad as they made out, but I had to be very careful. If my medication started wearing off, I'd lose my balance and just fall over, and had to come off. Many times, I'd have to sit on the touchline unable to play, which frustrated me because I absolutely love my sport."
Frustration is a word he returns to often. "Patience is one of the things you have to have a lot of when you have Parkinson's," Matt says. "My family has been incredibly good. They wanted me to be as normal as possible. They encouraged me to get involved with everything I possibly could. I don't think I was particularly aware that I was ill – it was just something I had to deal with every day."
The condition wasn't without its small silver linings for a young man. "Because I'd grown up with Parkinson's, my body developed to cope with the physical stresses of it. So my arms were very strong. My way of getting in with the in-crowd was to challenge the rugby team to arm wrestles, and I quite regularly used to beat them. It kind of got me credibility."
As Matt grew up, so Parkinson's became simply a fact of his life. It was even fair game for his mates to joke about. "We used to go to a pub in Macclesfield. Occasionally, my medication wouldn't be working so well, and my legs would start twitching. One of the lads likened me to Michael Flatley. It looked like I was sitting auditioning for Riverdance. That nickname stuck. But things like that help you cope. They didn't treat me any differently to anyone else."
After school, he took up a place with a publishing company, an industry he worked in for 20 years.
Seven years ago, Matt had deep brain stimulation surgery, which involved inserting electrodes into his brain, which are attached to a wire and a pacemaker on the wall of his chest, under the skin.
He has a remote control that can adjust the stimulation to his brain. The treatment has meant that Matt no longer becomes fully paralysed by the condition – something that would happen on a regular basis before.
Through all the years, Parkinson's has been ever-present. The severity of his symptoms is linked to his moods. Stress or excitement make them worse, relaxation calms them. "I could plan something and then at the last minute my medication would stop working because I'm looking forward to it or I'm stressed about it, and I have to say, 'I can't do this any more.'"
Matt has watched The Michael J Fox Show and though he found it uncomfortable (watching other people with Parkinson's sets off his symptoms, he finds), he also found it funny. His condition is also back on his mind because of Billy Connolly, the comedian, who has been diagnosed with Parkinson's aged 70.
"I empathise with all of the celebrities and their families because I know what they're going to be going through.
"It's like being two or three different people. There's a Matt who's confident and vibrant. Then there's a Matt who's a bit quieter when his medication's not working.
"But, for me, it's been important to see Parkinson's as a real bloody inconvenience – but not as a disease."
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