I thought I was too young for Parkinson's – then I was diagnosed at 29

I climbed the stairs and stepped onto the catwalk. As the light hit me, my rainbow sequin outfit turned me into a human glitter ball. 

For the next three minutes, my total concentration was locked on putting one foot in front of the other. 

Unable to lift my head, I had no idea what was happening around me, with my hands clasped so tightly, I feared they’d never untangle.

As I approached the end, it quickly dawned on me that I hadn’t planned what to do. Didn’t know how to end my moment.

A sassy hip lean? A strong power pose? Or just turn quickly and scuttle back to safety?

After a combo of all three, I held my breath. 

Thunderous applause ensued.

I’d just finished my first runway walk at ‘Catwalk To A Cure’, a charity event held in aid of Parkinson’s UK back in 2021. It’s terrifying enough for anyone who isn’t a model. 

But I’m not just anyone. 

See, 10 years ago, at the mere age of 29, I was diagnosed with Parkinson’s.

My diagnosis came back in 2013 after I started to realise that I couldn’t control my mouse as easily as usual in my job as a graphic designer. One of my colleagues had carpal tunnel syndrome in her wrist and I decided I probably had it, too – so I wasn’t hugely worried.

Except, my parents were concerned, so I promised I’d book a doctor’s appointment.

I went to my GP who was bothered that my arm didn’t swing when I walked, and he referred me to a neurological consultant at the hospital.

Scans of my brain showed that I was in the very early stages of Parkinson’s – a brain disorder that can affect balance and coordination. It can gradually get worse over time, ultimately affecting walking and talking, with people usually being diagnosed after the age of 60.

I was strangely calm about it at first because I’d ironically been working as a designer on the Parkinson’s UK website, so I’d already absorbed a lot of knowledge about it. Then, it suddenly hit me like a ton of bricks that it was me that had it. 

I wasn’t even 30, and yet my life was no longer going to be how I’d always just assumed it would be. Getting married. Having children. Enjoying a successful career. I never thought this uncertainty would be my future, and I was devastated.

My knowledge of Parkinson’s before working with the charity was almost non-existent. It was something I thought people’s grandparents got, and that it just made them shake. But in fact there are over 40 possible symptoms of Parkinson’s, and anyone can get it – young or old. 

Because it’s still pretty rare in younger people there’s so much that’s unknown about how quickly it will worsen, and how. There’s still no definitive reason as to why people get it, and at what age.

Parkinson’s: the symptoms

There are other 40 possible symptoms of Parkinson’s Disease, and while it’s most commonly diagnosed when a patient is over 60 – anyone of any age can develop it. There is currently no cure.

However, the four main symptoms of Parkinson’s are:

  • Tremors in jaw, hands and limbs
  • Muscle stiffness
  • Slower movement
  • Impaired coordination or balance

Since then, as my Parkinson’s has progressed, it’s definitely become harder to live with. Unfortunately, my neck muscles failed around five years ago – leaving me unable to lift my head. 

Three years ago, I started my own business and I’ve mainly worked from home so I’m grateful it hasn’t affected my opportunities, but out in public it’s hard when you look different. I normally can’t see people staring at me, but my friends and family have mentioned it’s hard for them not to get angry, or protective.

Since I was diagnosed, and then my neck dropped, I’ve steadily had to become a lot more confident in all the strange things my body does. It didn’t just happen though, I’ve had to work at having that mindset.

I knew that I was going to stand out anyway, so I started to embrace it and wore more colours. I’ve always loved fashion and being creative, so dying my hair bright pink made me more approachable, and was a good conversation starter with strangers. 

I also decided to start a blog where I would hold myself accountable to try something new every day and see if there was maybe something my body could do that I didn’t know about.

I gave everything from axe-throwing to flower arranging and having my body painted a go. It gave me such a buzz seeing what I could achieve.

My life most certainly was not over.

Thankfully, I managed to get myself into a positive mindset really early on with the help of my family, friends and medical team. I had to in order to survive the stares and misconceptions of my condition. 

I was initially worried that life would become very limited, but in fact, by having to put in more effort to have the life I wanted and try new things, I ended up doing more than I ever expected. 

Joining the ‘Catwalk to a Cure’ event, back in 2021, was actually one of my new things to try. The Events Team at Parkinson’s UK reached out about the opportunity and I couldn’t resist giving it a go.

Once I got over the initial fear of tripping up or becoming shaky on the catwalk, to be part of such a body-positive show felt incredible. Everyone was really supportive and we felt like one big team.

It’s even more exciting to be taking to the catwalk again this year as I recently had ground-breaking surgery to lift my head and strengthen my spine back in January. It was a long operation where 30 titanium screws were used to support my spine to pull my head up and then wedges were inserted in the front of my neck to support the weight of my head. 

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It’s incredible that my head is now upright and I can look people in the eye. Eye contact is really important to me, and was one of the main reasons I took the risk to have this surgery, which could have potentially left me paralysed.

After the surgery, I had to relearn how to walk because my balance and muscle control were completely wrong.

Now, I stand tall once more – and will proudly walk down the catwalk. I can’t wait to see everyone’s faces and look into their eyes for the first time from the stage. 

I think there’s a misconception that Parkinson’s only happens to older men and that it destroys your life – I’m proof that this stereotype couldn’t be more wrong. 

It’s a hard condition to live with, I’m not denying it by any means, but it’s your choice how much you push through and have a life besides the condition. 

As for me, my life is better than it’s ever been – it’s certainly not over! I try to say ‘yes’ as often as possible, and prioritise adventure – however small.

I genuinely still feel excited about what every day will bring. Parkinson’s and all.

‘Catwalk to a Cure’ is being held at Proud Embankment, London, on Tuesday 16 May 2023. Tickets are available from £30. To buy your ticket, or to find out more about the event, visit events.parkinsons.org.uk/event/catwalk-to-a-cure.

Age is Just a Number

Welcome to Age is Just a Number, a Metro.co.uk series aiming to show that, when it comes to living your life, achieving your dreams, and being who you want to be, the date on your birth certificate means nothing.

Each week, prepare to meet amazing people doing stereotype-defying things, at all stages of life.

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