41 years of Parkinson’s – How digital health transforms care

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There’s no doubt that digital technology has enhanced the lives of patients. That’s certainly true for Matt Eagles, who has had Parkinson’s for 41 of his 48 years. As an advocate of patient engagement and empowerment, he’s passionate about the use of technology as an improver of communication between patients, communities and healthcare professionals to drive better outcomes for health. In this article, Matt discusses his own experiences with the people and technology that have been involved in his own care journey.

Parkinson’s as a child – a bit of a puzzle

When you’ve had Parkinson’s for 41 years, it’s unusual. Parkinson’s is typically seen as something that affects you later in life, because of its degenerative nature. So, at seven years old, when my headmaster noticed that I couldn’t balance at all – which was unusual for an active young boy – I had the healthcare professionals a bit stumped. I spent a lot of time at the doctors and hospital as a young boy, with various health professionals struggling to understand how a young boy was showing symptoms of a neurological disease normally associated with elderly people. When my consultant prescribed me medication for Parkinson’s, I didn’t know anyone else who had the disease, and no one to share my experiences with. Technology today means I can share my experiences through social media and feel much more connected to others. Technology has helped get better health outcomes for myself and others alike.

Dealing with the day-to-day and side effects of medication

Parkinson’s disease affects every single aspect of my daily life – it's a neurological degenerative disease that has no cure. In my everyday life, things like shaving, getting dressed, making a brew in the morning is a bit of a challenge! So I’ve tried pretty much any and every medication going to make my daily life that bit easier. I’ve tried many medications in my time with varying successes. The medications and treatments I’ve had over the years have enhanced my quality of life beyond what I could imagine. In 2006 I underwent deep brain stimulation and it’s completely changed my life – I’ve been able to travel all over the world, skydive, abseil and even fulfil my passion as a photographer, which led me to be an official football photographer at the London 2012 Olympics.

But some of the side effects of my medications have led to further day to day problems. A dopamine agonist gave me horrendous impulse control issues, which led me to have a huge online gambling habit, through which I lost thousands of pounds, and I was gambling away money me and my fiancé had put aside for our wedding. Fortunately, my wife to be, realised this wasn’t me, it was the medication that could be causing this, I saw my consultant and we managed to stop this medication, and the impulses stopped.

Online GP services saves me time

I’m currently on four different types of medication, and I estimate that I’ve taken over 220,000 tablets in my lifetime. Remembering to take medication can be difficult with Parkinson’s, so digital apps like Evergreen Life are great to help manage the whole process. I can order my medications, set medication reminders and book my GP appointments all from my app on my mobile phone – saves me time trying to get through on the phone or get to the doctor’s surgery – I can now do all that from home. I’m able to manage my own care, and my wife can help manage my care too, as I can share my personal health record with her. Keeping a record of when and how often you take medication can also help get better health outcomes. People can end up on medication for longer than needed or experience side effects if not reviewed regularly. Keeping your medication history up to date within a personal health record like Evergreen Life empowers patients to speak up and have confidence in their own care outcomes.

Technology has changed healthcare for the better

Before the internet I was pretty isolated with my health conditions. I didn’t know anyone going through the same thing and I 100% relied on healthcare professionals to inform me about my care and my condition. Now, with the power of social media, email, video and apps, I’m able to be completely clued up about my care, and able to share my experiences with others online. I don’t want power – I want to speak to people on the same level. I’m committed to giving something back to the healthcare industry that’s helped me so much – I’m an advocate of absolute honesty and encouraging other people to speak up about the symptoms and side effects that they try to put to one side. Putting people in control of their own health is vital to the advancement of healthcare, but it’s not so much about just patients having control – we want to improve communication to improve outcomes. I love the idea of everybody speaking the same language and being honest with each other – sharing healthcare data amongst everybody, both patients and health professionals alike, is a huge step forward in giving people confidence about their own health.

About Matt

Matt is a Patient Engagement Advocate and Keynote speaker encouraging honest dialogue between patients, healthcare providers and Pharma in a manner and language all parties will understand . Matt works with media comms agency Havas Lynx having spoken at the launch of their #LXAcademy at HOME Manchester in May 2016 and May 2017. Matt was featured in their publication #HealthcareHeroes publication – a curated selection of people working with passion , purpose and determination to improve peoples’ lives’ all over the world . Matt’s Keynote speaking engagements include : Wired Health 2017 ( March 2017), Founders Forum Health Tech, (June 2017) , Financial Times Live Health Summit Europe ( June 2017) His media appearances have included Daybreak , BBC Radio 4 Saturday Live , BBC Five Live, Newstalk (Ireland), BBC World Service , Sky News , The Independent and The Mirror. Matt was an accredited EP’s football photographer at the London 2012 Olympics for ESPN Soccernet. He has had several articles published on his experiences with Parkinson’s Disease most notably in the Huffington Post , Parkinson’s Europe and Primary Care Today. He also wrote a series of articles for Parkinson’s UK in their Quarterly Journal.

Written by
Evergreen Life

Article updated:
October 30, 2017
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