Following her guest talk at The Collective Old Oak, the Collectivist were excited to sit down with Emma Lawton, author of ‘Dropping the P Bomb’. Emma was diagnosed with Parkinson’s disease at the age of 29 four years ago – here’s what she’s been up to since then:
How has being diagnosed with Parkinson’s affected your life?
Prior to my diagnosis, I was working as a graphic designer and creative director – pretty much your average 29 year old just getting on with life!
Strangely, being diagnosed with Parkinson’s has actually changed my life for the better, in the sense that it’s made me say yes to a lot of things I probably wouldn’t have said yes to previously. For example, I’m going on boat for charity with Barclays next year for 5 days, sailing around parts of Great Britain.
So it’s made me less afraid of stuff, and more open to risks and doing things that push me outside of my comfort zone – because everyday I’m sort of pushed outside my comfort zone! It’s opened doors for me that probably would have been hard to open, or I wouldn’t have even known existed had I not been diagnosed.
How rare is it to be diagnosed with Parkinson’s at such a young age?
Something like 1 in 200 people diagnosed with Parkinson’s will be under the age of 45, which is considered young.
There’s a group of us in this category who are quite fighty, trying to be the ambassadors, wanting to push things forward. We’re working with the charities and trying to get ourselves in positions where we can help in some way. I think a lot of people sort of resign themselves to the fact they have Parkinson’s if they get diagnosed when they’re older; when you’re younger, there’s more of a force for you to do something about it because you’re going to have it your whole life. You want to carry on doing the things you had planned. Just because I have Parkinson’s doesn’t mean I don’t want to get married or have kids. This pushes you to get involved in the advocacy side of things because you know that it’s helping you, and others like you, create the future that you want.
How did you connect with other people in the same situation?
It took me a long time to actually want to do it, because I was initially of the mind that I didn’t want to hang out with people just because they had the same condition as me. Slowly over time I’ve realised that they’re a vital part of my support network, and I’m a vital part of theirs.
My nurse suggested I connect with some other people with Parkinson’s when she thought I might be suffering from anxiety. I started by speaking to a few people on Facebook, including one girl who used to do a lot in the public eye. I used to message her in the night and be like ‘I’ve taken too much medication!’, or ‘I’ve forgotten to pick up my prescription!’, or ‘am I going to die?!’ – these ridiculous nighttime panics – and she was great support.
It seems now that if I have a friend with a friend who gets diagnosed, we’re all put in contact. It’s taken me a while to move from mentored to being the mentor. My friend wrote something about this whole idea of almost graduating through it. It’s like you’re a fresher when you first get diagnosed – you don’t know anything about it and you’re really heavily reliant on your tutors and older people to guide you through things – but then eventually you sort of graduate and can start helping others.
How did you react to the news of your diagnosis?
When I first got diagnosed my first response was that I was actually relieved, in a weird way. There were a bunch of things my symptoms could have meant, and actually Parkinson’s was one of the only ones that you didn’t pass away from – so I was relieved that I wasn’t going to die. Then obviously it clicked in that I had Parkinson’s and had to deal with it. It was also nice to have an explanation for the things that I had been feeling over the past few years.
As soon as I started taking all of the medication, I felt really sick. It made me withdraw into myself a little bit, and I stopped going to things because I felt so nauseous. My friends would invite me to do things, and I kept turning them down. There was a turning point when I realised that I was incredibly lucky to have a great family and friends, and a roof over my head, and a job and people that love me. It just felt like first world problems, people inviting me to do stuff but not feeling able to go. It kind of woke me up a bit, so I basically started saying yes to doing stuff.
Good things started happening in my life, and I felt a lot more positive about everything. Since then, it’s always felt right and positive – what’s happened has sort of been the making of me in a way. It’s made me feel like I know what I need to do. I’ve never had a cause to fight for, or passion for anything in that sense – finding myself in this position has made me really know what I want to do, and what I’ll stand for, and what I won’t take.
How did you become an advocate for people with Parkinson’s?
I was working alongside the people in my company who were designing the Parkinson’s UK website at the time – so I knew the team over at Parkinson’s UK too. I started going into meetings with them, and it sort of grew from there. They knew I was someone who was happy talking about it, and I guess it came quite naturally.
Parkinson’s is a thing that makes you want to be smaller. It tries to stifle your voice – all the muscles in your throat can go so that you struggle to speak. A lot of people have trouble with their writing getting smaller too. Everything about the disease tries to make you smaller, so it’s kind of nice to have these things that make you have to be bigger – going on TV and stuff like that, writing and putting yourself in situations that are a little bit scary, like my book launch where I had to sign books. It’s stuff that’s challenging you, but it’s good because you’re not letting it make you into that smaller thing.
If you could tell people one thing about Parkinson’s, what would it be?
I would want people to know that young people can get it too. If you see someone shaking or stiffen up, don’t judge too quickly. People do, and think you’re weird, or up to something dodgy, or drunk or on drugs. Especially in London at the moment, people can be quite scared of things they’re unsure of because of all the things happening in the world. You see something and don’t know what it is, and it frightens you – but the minute I explain it to people they’re fine.
Having gone through this journey yourself, what would your advice be to other people who get diagnosed?
I would say take as long as you need to come to terms with it, but don’t let it eat you up. It’s a condition for life. There are other conditions, like cancer for example, that consume you for perhaps a shorter period of time – you can dedicate your entire time to trying to sort them out, or feel better, or fight them. If you spend your whole life trying to do that with Parkinson's, then it’s just… that’s too long to be fighting something. You can fight it to the degree that you can do outreach and talk to people and make life better, but if you’re angrily fighting it your whole life, that’s too much, nothing’s going to happen.
You have to treat it like a person almost, one that’s a nuisance, I would say. Something that’s trying to trip you up, or mess with you a little bit. Don’t take it too seriously, if you can possibly avoid it. It’s very difficult. The people I know who are thriving have got really great senses of humour, and throw that back at Parkinson’s. It doesn’t take away who you are; you can still be yourself and that will shine through.
To anyone diagnosed at any age, don’t rush yourself to deal with it. It’s an incredibly massive thing, but don’t wallow forever. Don’t let yourself go down. I always think as well, if there is a cure or something in the future, I wouldn’t have wanted to spend 20 years wallowing – you don’t get that time back. It’s a case of do the best you can everyday. Today is the best you’ll ever be. It’s the most able you’ll ever be. It’s the youngest you’ll ever be. Just get on with doing stuff and don’t look too far into the future.
Great life advice in general! What have you got planned for the near-future?
Besides the boat tour with Barclays, we’re also approaching the BBC about another documentary that would have me in more of a presenter role. I’m also going to try to write another book because people keep nagging me to do one! I’ve been doing quite a lot of work recently in the travel industry, so I get to go on different trips and stuff, so I’m building a collection of stories on travel. I thought it might be fun to write something about travelling with Parkinson’s, from an anecdotal point of view. I’d like to try and write some fiction as well!
Interview by Grace Waters