11th April 2017Blog
Living with Parkinson’s disease from the age of eight certainly hasn’t stopped Matt living life to the full. Over the years he’s jumped out of planes, abseiled town halls, photographed Team GB at the 2012 Olympics for ESPNSoccernet and is now working as a patient engagement lead to pass on his experiences of living with Parkinson’s.
We meet Matt at his home, he sits opposite us talking about his school days. “The head teacher of my first school, Headley Cleaver, first noticed me falling backwards in assembly,” he said. At the same time he recalls having trouble at swimming lessons where his legs would just start to sink. Matt was referred to his GP Dr Fox who got the ball rolling and sent him to the Booth Hall Children’s Hospital. However it was a chance encounter at the local infirmary where the breakthrough was made. It was there that Dr Liversedge suggested to Matt’s parents that he try Sinemet, a drug for Parkinson’s disease. The tablets seemed to work, and more importantly from Matt’s perspective he was given 50p by the doctor for taking this bold step to try them out, unfortunately it didn’t stop Matt having some tough times at school.
“One of my teachers called me ‘sparrow legs’ another teacher called me ‘dead legs’. In my first year of senior school, I was dragged into a class by fellow pupils and the teacher forced me to lie on the floor under the black board for the whole lesson to, in her eyes, recover. I couldn’t get up.” One way Matt got around some of the torment was to get involved in everything he possibly could and because his legs were weak, his upper body got really strong. He said, “I used to arm wrestle the strongest lads in the year. There was only one of the rugby lads who ever beat me and he went on to become a professional rugby player, so that used to get me a bit of street cred.”
Over the years Matt has tried lots of drugs to control his Parkinson’s. He used to have to inject himself each day inserting a canula into his stomach and then attach a syringe driver which administered the toxic drug intravenously. The needle remained in place all day until he went to bed. “One of the drugs would work like Viagra,” he said, and would cause extreme startle, making him jump out of his skin when the phone rang, which was very awkward in the telesales arena where he worked. Another one of the drugs caused a potentially catastrophic Impulse Control Disorder to appear. “All of a sudden I started to gamble heavily and lost thousands of pounds. I realised something was seriously wrong and spoke to my consultant who took me off the treatment immediately. Pretty much over night the gambling subsided and the risk taking behaviour disappeared.” Just over ten years ago Matt had deep brain stimulation. He now has two electrodes that go into his brain and are powered by a battery in his chest. The implants control his stiffness and rigidity and can be remotely adjusted depending on the severity of the symptoms.
The symptoms are still there though and can become more exaggerated with emotions or mistiming drugs, but they are a lot more manageable than they used to be. He was in hospital for nearly three weeks and it changed his life. “Simple things,” he says, “like before the treatment, at night I used to roll out of bed and pee into a bottle on the floor because I couldn’t make it to the bathroom. Now I can stand up and walk to the toilet.” Matt worked in publishing for over 20 years and during that time he started writing football match reports for the local paper. “It combined two of my loves… writing and photography.” Photography certainly isn’t the first pastime you would think of for someone with Parkinson’s but this hasn’t stopped Matt. Back in 2012 he got an amazing opportunity through ESPNSoccernet to photograph the football at the 2012 Olympics. He said, “I’ve never at any point thought I’ve got Parkinson’s so I can’t do this. I just worked out exactly how I could capture what I’d need. So I got my press pass and followed Team GB around, photographing both men’s and women’s games at Old Trafford, Wembley and the Millennium Stadium. It was amazing.”
Unfortunately he was made redundant recently and found it incredibly difficult, despite his experience, to find a job. “I didn’t want to think it, but the fact that I talked a lot about my Parkinson’s and the work I’d done around it on my CV didn’t help me at all.” He continued to do what he enjoyed, writing and photography, but as well as match reports he started to write about his experiences with Parkinson’s. He was sharing his experiences through Parkinson’s UK and on social media and it wasn’t long before he’d written more and more articles and was being interviewed a lot. He said, “I’ve appeared on Sky News, Sky Radio, daytime TV, Five Live, Radio Wales, World Service and I was featured in the Independent, Mirror, Sun, Express.” He is now working as a ‘patient engagement lead’, and an ambassador for Medtronic who manufacturer what Matt calls, ‘My brain pacemaker’.
We talked some more about social media and the ability to talk to people and share experiences. He said, “Once, I was making a sandwich, I’d managed to spread the butter without wrecking the bread, I’d managed to cut the cheese without chopping my fingers off, I put the bread on top and then had a twitch and knocked the sandwich straight into the dog’s water bowl. I was gutted.” He dealt with it by sharing the moment on social media and it instantly started a conversation with people who had similar instances. “Sharing a frustrating moment allows me to laugh at it rather than get annoyed. I enjoy sharing my experiences, ultimately it helps me cope. I hope it helps others too.”
Because Matt has had Parkinson’s from an early age, he’s had no choice but to live with it. He said, “I’ve not really known anything different.” Living with Parkinson’s every day is different; some days can be great and others can be really dark and it’s this breadth of experience that he can share with others, people who are new to the condition who are trying to find ways of dealing with it. “It’s lovely to get feedback from people saying they’ve heard me on the radio or TV and they’ve felt less alone. I’m not afraid to tell the world I’ve got Parkinson’s. I can’t change what’s happened to me, but I can embrace it and live the best possible life I can.” He also spoke fondly of his wife Viv who he married back in 2014 saying, “She is my rock and keeps me on the straight and narrow but encourages me to do everything I possibly can. We make a great team.”
Matt’s attitude to life is astonishing. He talks about jumping out of a plane, abseiling from the top of town halls, photographing at the Olympics and at a Kaiser Chiefs’ gig and laughs off the idea of being an inspiration to others saying, “I don’t do things to inspire people, I do things because I want to. I set myself goals and work out ways to do them.” By speaking out, Matt is letting people know that having Parkinson’s can be normal and that they don’t have to stop enjoying life. He said, “I feel pain every day and at some point every day my legs don’t work so there will be stuff I can’t do, but I never forget I’m blessed and I try to live life as fully as I can.”