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In her second article for us, Beth Britton looks at the real-life experience of living with Parkinson’s
As someone who’s done a lot of media work I’ve had a fair few interviews, but one that has always stood out for me is my 2017 interview for health communications agency Havas Lynx. Why? Because I was interviewed by Matt Eagles.
Prior to meeting Matt, I knew little about him. By the end of our interview, we’d made a connection through our shared experiences that means to this day we have stayed in touch.
Matt’s task was to interview me about my experiences of caring for my father who had vascular dementia for 19 years. What I’ve learnt from Matt since is all about his experiences of living with Parkinson’s since the age of 7. He candidly documents his daily challenges via his social media channels, and is an outspoken commentator and advocate for people with Parkinson’s
For UK Parkinson’s Awareness Week, World Parkinson’s Month and World Parkinson’s Day. There is no one better to talk to about living with Parkinson’s, and I hope you enjoy Matt’s insights.
Hi Matt, thank you so much for agreeing to share your thoughts on living with Parkinson’s. Can you begin by telling us a little bit about your daily life with Parkinson’s? What challenges do you face?
Matt: “Every single task that most people take for granted is a challenge for me. I have to be careful getting out of bed, because first thing before I take my medication I’m slow and stiff. If I twist awkwardly my muscles go into dyskinesia which can be incredibly painful.
Once in the bathroom having a shower can be impossible, despite having a grab rail in the shower itself. Our shower is over the bath, but it’s often too slippery even with a mat for me to wash safely. The first time the cold spray hits me it sets my dyskinesia off and I end up dancing one handed with my strictly partner, the white grab rail! I have to be prepared to take a shower at any time of day when I feel stable enough to do so.
It’s exactly the same with shaving. Why I have always preferred to shave with a blade baffles me as more often than not I end up cutting myself. A top tip I have learnt through trial and many errors is if I perch on the edge of the bath and shave without looking in the mirror first, I don’t suffer from the dyskinesia so much and don’t end up with blood trickling down my face.
Once washed and shaved it’s time to get dressed. Putting on pants and socks can be troublesome, and I frequently end up doing the Parky Pants Dance around the bedroom with one leg in and the other leg out of my pants and I then end up in a heap on the floor. (The Parky Pants Dance features on the Parky Life website.
My wife gets up before me to see to the dog and she prepares my breakfast of a lower-cholesterol yoghurt drink, some high energy breakfast biscuits which I share with the dog, and a cup of coffee in a thermos mug with a lid and a straw. I can no longer drink from a mug as I mostly end up wearing the contents, and face the rigmarole of getting washed and dressed again.
I have three household chores to do before I start work. Firstly, it’s my job to wash up from breakfast, then take the recycling out, then clear the garden of any presents left by the dog. This last task can be particularly difficult as I have to bend down to my haunches and I often lose my balance. Recently I ended up in a bush with an empty bag and a massive feeling of guilt as I realised the bag had been full but the contents had flown out during my fall and ended up in the neighbour’s garden … and they don’t have a dog!
As I now work from home its super easy to begin work, setting up my laptop on the living room table, although my dyskinesia has meant I’ve suddenly disappeared from the camera shot on Zoom calls and I’ve broken two chairs wriggling about.
In the evening my wife cooks tea. Depending once again on my dyskinesia it may or may not be safe to sit and eat at the table and not fling food everywhere. If it’s a good day, I eat with my wife and son.”
I know you are a big believer in focusing on the positives and getting on with things. What does living as positively as possible with Parkinson’s mean for you?
Matt: “I describe myself as a positivity activist. Often things don’t go as scheduled and that is just a hazard of living with Parkinson’s. I have found that the more I let things bother me the worse my symptoms become, so I am now the guru of slow and I try to keep as calm as possible. I try and do as much as I can when I can, getting out in public to humanise the Parkinson’s experience for the general public and let people know we are not just drunks staggering around!”
One of the focuses for this year’s Parkinson’s awareness campaigns is on mental health. Has living with Parkinson’s impacted on your mental health and if yes, how?
Matt: “Absolutely it has. The vast majority of drugs used for Parkinson’s affect the dopamine produced in the brain, and this affects not just movement but emotions too. To quote the late Oliver Sacks: “You cannot throw a stone into a pond without ripples.”
I have suffered from depression, I’ve self-harmed and I’ve suffered from panic attacks during my life, but luckily I’ve come out on the right side. However, mental health is still a huge issue for many people with Parkinson’s and indeed their families.
I regard myself as lucky – I cannot remember life being any different, but for many it’s incredibly difficult to come to terms with a new way of living and not being as mobile or agile as you once were.”
What advice would you give to someone newly diagnosed with Parkinson’s?
Matt: “Be kind to yourself, this wasn’t your choice. It’s ok to feel down, but share your thoughts with others. Try and keep active for as long as possible and keep up your social life, you are still you! Celebrate the little wins and strive to be happy.”
What messages would you like health and care professionals to know about living with Parkinson’s?
Matt: “Living with Parkinson’s is tough and it’s so vital for a person with Parkinson’s to be as independent as possible. Enable a person with Parkinson’s to be autonomous. Sometimes intervention or voicing concern too vociferously or too early can be distracting for the person, interrupt their concentration and actually cause them to fall.
Be patient, flexible, kind and prepared to share some of your own stories. Communication isn’t – and shouldn’t – be just one way. It builds relationships, which in turn builds confidence and trust which enables you to make decisions together.”
Find out more about how ENA Care Group could support you or your family by calling 0800 4334 413 or emailing care@ena.co.uk.
About the author:
Beth Britton is an award-winning content creator, consultant, trainer, mentor, campaigner and speaker who is an expert in ageing, health and social care.
