Parkinson’s disease: ‘I was diagnosed with Parkinson’s at 29, like Michael J Fox’

When I was first diagnosed ten years ago I was just 29, the same age as the Back to the Future star. The world was shocked when he revealed his news in 1998, admitting that he’d been diagnosed seven years earlier. Ironically, when I was 29, I was working as a web designer for the charity Parkinson’s UK. As an experiment, some of my colleagues were given bits of tech that simulated the condition including a glove that makes your hand shake and a corset that makes your chest seize up. Then there was me, not with a tremor yet, but with a stiff hand that was making it increasingly hard to do the detailed pixel work that my job required.

That’s the thing with Parkinson’s: it presents so differently in each one of us that you could easily miss the warning signs even if, like me, you were to read a list of symptoms every day. It wasn’t until my dad’s 60th birthday party that year that I thought something could be seriously wrong. One of his friends, a healthcare worker, noticed that my arm was stiff and that I held it strangely when I walked. She asked what was wrong, and my Dad overheard and made me promise to see a doctor. I had been putting it off in the hope that my strange symptoms would disappear, but sadly there is no wishing away something so serious.

When I went to my GP the next week I was quickly sent for a brain scan at the local hospital. Fearing the worst in the meantime, I turned to “Dr Google’’ and soon convinced myself I had something like Huntington’s disease, which is terminal. So it sounds mad, but being told that I had Parkinson’s actually came as a relief to both me and my parents, who came in with me to hear the news. My mum knew all of the right questions to ask, and it’s thanks to her that in the days to come I had most of the answers I needed. Far from commiserating, we celebrated with dinner out as a family and a ride on the London Eye − we didn’t want to waste a gorgeously sunny April day out together in the city.

That relief was a funny thing. On one hand, I could see my life stretching out in front of me again, the way it only does when you’re in your 20s and feel invincible; on the other, that first trip to the hospital neurology ward was a terrifying glimpse into my future. The waiting room was filled mostly with older Parkinson’s patients, at a later stage of the illness, and knew that I could be looking at my future self.

What I didn’t know was exactly how my own condition would change − would my movements slow down, or would I one day struggle to speak?

Fortunately, the sooner you’re diagnosed with this illness, the more you can do to help yourself live well. In the 10 years since I first stepped foot in a neurology ward I’ve learned to manage my symptoms to the extent that I still live alone, because it’s so important for me to retain my independence. For instance, I now have a noticeable tremor in my hands, made worse by stress, but I can mitigate it using relaxation techniques. My favourite way to calm down is by sitting near the river where I live in south London.

I also have to deal with something called dystonia, where my feet turn into fists while I’m trying to walk, or my knee tries to turn itself at a 45-degree angle. This is a side-effect of the medication I take, rather than the disease itself. My worst symptom, a drop in my neck that left my chin on my chest, was something of a medical mystery − I was one of a handful people in the world to develop this particular problem, and while the others also had Parkinson’s, doctors remain unsure about whether it was caused by this disease or if we are just supernaturally unlucky. The worst part was that I couldn’t make eye contact with people, though my little nephew would crawl up onto the table and look up at me so that we could chat.

When I was first diagnosed I was open about having Parkinson’s, but then it started to really weigh on me. Lacking answers myself, I’d shut myself away to avoid the questions I’d get from well-meaning friends and strangers. But my dad has been my inspiration. He was diagnosed with macular dystrophy, a vision disorder, when I was at university. Instead of letting it get him down, he has picked up golf again − his friends thought he was joking about his eyes, as he’s such a good shot − and has even written a book since then, despite gradually losing his vision. I decided I too would pull myself out of that rut.

The biggest changes have been to my career. After my diagnosis, I was promoted to creative director at the agency I worked at, and I then moved into technology after appearing on The Big Life Fix, a documentary series on BBC in 2016. I worked at Parkinson’s UK for a brief stint, setting up a panel for testing apps and devices. I went to a start-up bootcamp and then founded More Human, a company that helps people build communities online and in person. Being a start-up co-founder is stressful enough even without Parkinson’s, but after surviving our first three years of trading, I can honestly say that it’s possible to build a high-paced career despite having a disability.

Every year my family and I celebrate the anniversary of my diagnosis and the things I’ve achieved since then. I have a “f—-it” list of things I want to do, and have made it my mission to try something new every day, from wild camping in Wales and sailing a tall ship, to being a catwalk model and trying my hand at stand-up comedy. Although I do hope to get married one day, I’ve decided that I don’t want children, and my focus is on making sure I earn enough money to always be able to hire a carer, so that that responsibility doesn’t fall to my future husband.

Last January, I had a life-changing 10-hour surgery to bring my head up to its natural position, which involved specialist spinal surgeons breaking and resetting my spine. The operation could have left me in a wheelchair or even killed me. I spent a long time mulling over whether this major surgery was something I truly wanted for myself, or if I was feeling a pressure to look and act more “normal”. In the end, I decided that being able to make eye contact easily again was worth the danger. The first time I managed to look my mum and dad in the eyes again, I could see them tear up − that in itself made the ordeal worth it. Far from hiding away, I’ve dyed my hair pink and my colourful dress sense helps me to make conversation with strangers for reasons completely separate to my disability.

It’s incredibly rare to be told that you have Parkinson’s in your 20s or 30s, but people who are diagnosed young can live for 40 years or longer, a mark I fully intend to surpass. Just look at Michael J Fox: he was diagnosed with this disease when he was 29, the same age I was, and is still kicking at 62.

Contrary to popular belief, Parkinson’s is something you die with, rather than of.

With advances in treatment, most people with Parkinson’s disease now have a normal or near-normal life expectancy, and scientists are constantly making progress in understanding this disease. I’m hoping that one day I can look back and say that I used to have Parkinson’s. That sounds a lot more like me.

As told to Lauren Shirreff

Parkinson’s disease: The essentials

• Parkinson’s disease is a condition in which parts of the brain become progressively damaged over many years. The main symptoms, according to the NHS, are tremors, slow movement, stiff and inflexible muscles, but other physical and psychological symptoms include anxiety, loss of smell and problems with balance, sleeping and memory.
• Parkinson’s disease is caused by a loss of nerve cells in a part of the brain called the substantia nigra. This leads to a reduction in dopamine in the brain, which is responsible for regulating the movement of the body. Exactly what causes the loss of nerve cells is unclear. Most experts think that a combination of genetic and environmental factors is responsible.
• Most people with Parkinson’s start to develop symptoms when they’re over 50.
• See a GP if you’re concerned that you may have symptoms of Parkinson’s disease

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