Disclaimer: In Real Life is a platform for everyday people to share their experiences and voices. All articles are personal stories and do not necessarily echo In Real Life’s sentiments.
I’m a 31-year-old creative director, with a SHEIN addiction and Parkinson’s disease. As you can tell, I don’t give Parkinson’s or Little P as my friend, Kevin, calls it the top billing in my life. It needs to know its place. But facing facts, Parkinson’s is an unpredictable, progressive neurological disease. Worst case scenario is that I’ll need care and a wheelchair, but I don’t think like that. There could be a cure tomorrow.
Through research, most people with Parkinson’s get it when they are over 50. I was diagnosed aged 29.
I hadn’t felt right for a couple of years before that. Decision making had become hard. I felt muzzy. The right side of my body felt like it had a trapped nerve, and I became shaky. “The Claw” became an office joke as my right hand struggled to do the delicate design I needed it to do. Life was busy. I didn’t have time to be ill. It wasn’t until a family friend, who’s a nurse, greeted me with the words – “What’s happened to your arm?” at my Dad’s 60th birthday party, that I went to the doctor.
Source: KPJ Ampang Puteri
While I was waiting for the scan results, my colleagues were coincidentally designing a campaign for Parkinson’s. Shocked, I read about the disease and knew straight away that this was what I had.
I felt awful, but not for the reason you think
What hit me hardest was hearing the worried questions my wonderful parents asked the consultant who had confirmed it was Parkinson’s. In typical parental fashion, my Mum and Dad both desperately wanted to make it alright. They couldn’t do it. I felt awful that they were feeling helpless.
I’m very sociable, but if friends were meeting down the pub I wouldn’t bother going. I’d end up crying and wanting to be alone.
Telling friends and relatives was tough, too. Their comfort and love were humbling, but the weeks afterwards were awful. I’m very sociable, but if friends were meeting down at the bar I wouldn’t bother going. I’d end up crying and wanting to be alone.
Parkinson’s was happening to me. I’d have it for life; there was no getting out of it. I worried about starting a relationship and having to drop the “I’ve got Parkinson’s” bombshell. Or would I be forced to give up work? How would I manage? Life changed. I had hospital appointments and medication patches to put on my body every morning.
But the diagnosis started to sink in and as it did my attitude changed
Ok. I had Parkinson’s but I also had friends, family, a job I enjoyed and lots to look forward to. I made the decision that Parkinson’s wasn’t going to define me. Colleagues and friends called themselves Emma’s Army to support me. Positivity was the way forward.
Soon after my diagnosis, I was promoted to Creative Director. It’s been a massive confidence boost but I regularly pitch to new clients and my body tremors make me look like I am incredibly nervous. As I need to inspire confidence, I tell clients that I have Parkinson’s but it won’t affect my work and my ideas are great. So far I’ve had no problems.
I also started a relationship with a guy called Jon
He was a friend so he already knew about my Parkinson’s, and I like that he doesn’t wrap me up in cotton wool. Occasionally, though, things hit me hard about our future. I found it difficult to pick up a relative’s newborn baby recently. It made me worry about how’d I’d manage as a mother, but I’m determined to have kids. Jon and I have talked about what would happen if or when I need more care. He’s intensely practical. I think we’ll be fine.
After years of living in rented accommodation, I bought an apartment which I now share with Jon. It has a lift but I didn’t buy it thinking about accessibility issues. I bought it because it has a lovely big lounge so all my friends can come around. We’ve had some great parties. My charm last year from my parents was a key, to celebrate buying the house.
I’ve even started my own business designing fabric. Using watercolours, I’ve produced some gorgeous effects thanks to my tremor! I turn the fabric into bags and other accessories which I sell online. It’s going well. Knowing I can earn money from home and doing something I adore is very empowering.
Getting diagnosed has made me want to grab life and squeeze every last ounce of fun and opportunity from it. Before Covid, Jon and I travelled to Australia with friends. We had an amazing time. I didn’t care when I saw people look twice at the medication patches on my legs as I sunbathed. I’ve even stopped having a weekend lie in. I want to get up and start the day.
I know my Parkinson’s is getting worse
The pain can be debilitating and tiring. It’s what scares me most. Although I can still wash and dress myself, putting on makeup is taking longer as my tremors are getting more severe. I have to pick my battles. I rarely wear heels now although I’ve got a trainer collection that would rival Kayne West. On the plus side, the medication has really helped clear my muddled feelings.
I’m in touch online with other younger people with Parkinson’s and we plan to meet up. I wanted to share my story to show being positive is vital. I have Parkinson’s but it doesn’t, and never will, have me.
For more stories like this, read: My Mother’s Brave Fight Against A Disease That Turns Your Body To Stone and The Disease That Eats Away At Your Body — And How My Mother Fought It To The End
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