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.
Sarah Carter is a health and wellness expert residing in the UK. With a background in healthcare, she offers evidence-based advice on fitness, nutrition, and mental well-being, promoting healthier living for readers.