“No land” said Noah,
“There – is – not – any – land.
Oh, Rabbit, Rabbit, can’t you understand?”
But Rabbit shook his head:
“Say it again” he said;
“And slowly, please…”
…recites Eagles as he recalls the poem reading that had won him the cup at the Alderley Edge Speech and Drama Festival while still a schoolboy. The poem reading he gave was thanks to his elocution lessons that had helped with what would later be understood as symptoms of Parkinson’s. Eagles was only seven when he was diagnosed with the degenerative neurological condition normally associated with people aged 60+. At the time he was one of the youngest person in the UK to be diagnosed with Parkinson’s – and, to the best of his knowledge, he still is.
It’s a ruthlessly visible disease – causing involuntary shaking; muscle stiffness and slow movements. Affecting one in 500 people, its exact causes are still something of a mystery, but it’s related to damage to a part of the brain called the Substantia Nigra, that leads to a reduction of the chemical dopamine, which plays a key role in controlling the body’s movement.
Eagles has an infectiously positive energy – and describes the challenges of living with Parkinson’s with great candour and humour:
‘I was walking my dog one day and as I bent down to pick up her poop, I lost my balance, fell over, let go of my dog and the poop went flying off in the air. I dived full length to grab the dog’s lead as I thought she was going to run off and then I couldn’t find where the poop had landed. I was frantically looking around for it!
‘I am very confident in saying I’ve got Parkinson’s – I make a big thing about saying hello to people first and breaking the ice. And I have plenty of funny stories to tell.’
Such a long history of dealing with the disease day-to-day has placed Eagles in a unique position to act as a patient advocate for Parkinson’s – something he now dedicates most of his time to.
‘In the early days though, there was nobody you could talk to – I didn’t even know anyone else that had Parkinson’s, let alone someone who was a similar age to me. It’s only been in the past 10 years or so that I’ve really come into contact with others with the disease – and it’s helped me tremendously to understand what other people are going through.’
These days, Eagles is active on social media, he’s done television, radio and press interviews, and he’s written for various platforms including the Huffington Post – all in his capacity as a patient advocate.
‘I’ve taken part in many campaigns with Parkinson’s UK too – to show people you can live a good life. With all this work, I try to advocate that it’s not all gloom and doom having Parkinson’s but you must be honest with it; with the good sides and the bad sides. If you don’t tell the full picture nobody would know.
‘Disease is about people. Stories need to be real to have an impact otherwise people just won’t connect with it. You can be as medical as you like, but at the end of the day it’s the nitty gritty real stories that really get the message across. Whether it’s video blogs or radio stations or even TV channels created by people with Parkinson’s (all of which exist) – people want to hear from people like them.’
Eagles is also passionate about how relations between the medical profession, industry and patients can be improved.
‘I’m trying to improve the very nature of honesty between pharmaceutical companies, medical device companies, health care professionals and patients,’ he explains.
‘I volunteer at Havas Lynx in Manchester two to three times a week where I give my view of anything and everything patient-related. I’m a big believer in patients being totally honest with their healthcare professionals and I try to encourage strong dialogue between everyone. There are perceived biases and prejudices amongst healthcare professionals, patients, and pharma and device companies but we’re all people at the end of the day. We don’t need to think that doctors always know better than we do. As patients we are the experts in our own conditions – when you’re living day-to-day with a condition you know it inside out.
‘We don’t need to think that doctors always know better than we do. As patients we are the experts in our own conditions’
‘Take, for example, the simple process of taking medication. Some people religiously take their drugs on time, but with Parkinson’s there are so many things that can impact absorption that this isn’t necessarily effective. So you need to do some trial and error and work it out yourself. The doctor can’t tell you what to do because they’re not with you 24 hours a day – they don’t know what you’re doing, what you’re eating, they don’t know what stress you’re under.
‘Communication is vital when it comes to side effects. You look online on social media and forums and so many people, irrespective of their condition, say they haven’t spoken to their doctor about certain side effects. Yet, without knowing, how can doctors and pharma or medtech companies make changes? We need to close the loop in communication between patients, healthcare professionals, and pharma and medtech companies. And it needs to go both ways.’
Matt recalls a brief period when one of his medications caused impulsive behaviour, resulting in him gambling very heavily: ‘I was using a dopamine agonist patch that you wear on your skin – but I’d also had a traumatic event in my life around that time. That event, together with the dopamine agonist ultimately caused me to go over the top. Fortunately, my wife recognised what was going on and I was taken off the medication and the problem disappeared.’
‘I’ve been a bit of a trailblazer and everything I have done is new simply because I’ve had it for so long. I’ve never actually been able to go to the doctors and say “what do I do now?” because I’m one of the few people to go through this at such an early age.’
‘Essentially, it is a pacemaker for your brain, implanted into the chest. The device delivers electrical pulses via two electrodes in the brain to bypass the part of the brain that is not working. I had two holes drilled into my skull and two electrodes put into my head. I think I look like a baby giraffe with little devil horns on my head, although everyone else says otherwise. The pacemaker itself is now under the muscle – originally it was just under the skin and it looked like I’d swallowed an iPhone – but the new position makes it pretty much imperceptible. What’s amazing is that I can control the amount of voltage and currents going in to my brain through a hand-held device. It’s like a remote control. So, technically, I’m bionic but I’m also remote-controlled as well.
‘It’s a very empowering and personalised device – you can control your own symptoms by increasing or decreasing the voltage. The hospital took me off my medication to see how it could control my symptoms. It was astonishing how powerful it was but also quite disturbing. I went from being totally unable to stand up, to walking well, to doing a Michael Flatley dance, twitching with uncontrolled movements all in the space of 20 minutes.’
Matt’s stories are strong reminder that through all this innovation and technology, it’s people and patients we are working for and with at the end of the day. And as the ones actually living with disease, often they have the finest ideas.
‘In an amusing way I compare it to the Wallace and Gromit episode with the wrong trousers, where Wallace actually designs these trousers with a remote control and they get sabotaged by a penguin. If you see footage of the film you would know what I mean. That’s exactly how I feel, like I’m wearing the wrong trousers sometimes,’ he laughs.
‘I wish there was a way to harness the muscle movements of dyskinesia’ he adds. ‘There’s a challenge for the medtech community to take on…’
‘With very little advancement in treatments for Parkinson’s over the last 50 years, those of us with the condition are increasingly looking to technology to step up and help us manage our symptoms.’ Now a library of apps is being launched by Parkinson’s UK and Our Mobile Health.
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