Nicky's new way forward with Parkinson's
Despite being surrounded by a hugely supportive family, Nicky found the first year after her Parkinson’s diagnosis very isolating. But after slowly coming to terms with her situation and discovering the Parkinson’s community, she’s determined to embrace the opportunities this new path has provided.
“Yes, you’ve got to have the enthusiasm. Yes, you’ve got to have the determination to do it. But for me,” Nicky says, “there’s always a way around things.”
“I think - in fact I don’t think, I know - I lived a lie to start with,” admits Nicky, reflecting on the months after she was diagnosed with Parkinson’s.
On the day itself, Nicky had gone to the neurology appointment with her eldest daughter, Kayleigh, and her 2 granddaughters. With her family sitting in the waiting room, a specialist performed a series of tests and finally asked Nicky to walk down the corridor and back again.
“When I came back into the room, the specialist told me I had Parkinson’s. After all these years, it still hits me. It just didn’t sink in,” says Nicky. She told Kayleigh as they left the hospital. Back at home, Nicky shared the news with her husband Gary, and her other 2 children, Chloe and Luke.
“I’ve always been a very, very positive person, and I was very much, ‘Don’t you worry kids, I’m going to fight this and do all I can.’ But I realise now, I was doing this for their sake,” admits Nicky. “On the outside, I was my usual upbeat self, but inside, it was killing me.”
During this time, Nicky’s work as a teaching assistant in a local primary school proved a welcome distraction. “After my diagnosis, I went into school and just carried on as normal. I’d be so busy with the children who I love and adore, I would literally forget I had Parkinson’s.
“But it was like living 2 lives - I was the Nicky at school who was well. Then I’d finish work, come home and it would hit me all over again - I have Parkinson’s.”
...as I became more proactive, that’s when the penny dropped - there’s a community out there. We’re all on the same journey and I’m not alone.
"...that's who I am..."
Almost a year after her diagnosis, Nicky was still trying to come to terms with the situation. “I’d been telling myself I’d accepted it, but I hadn’t really,” she admits. One day though, Nicky stumbled across a quote about acceptance. “It basically said if you accept something you can work with it, rather than battling against it.”
It proved to be a turning point and Nicky decided to get more proactive. “Kayleigh and Chloe had been telling me all about the research, but I’d never looked because I didn’t feel I could,” she explains. “But for the first time, I went onto Google and typed in ‘Parkinson’s disease’. And that’s when Parkinson’s UK popped up.
“I decided to put myself out there because that’s who I am. And as I became more proactive, that’s when the penny dropped - there’s a community out there. We’re all on the same journey and I’m not alone.
“Perhaps that sounds really obvious when so many people have Parkinson’s,” Nicky says. “But when I got my diagnosis, and despite having the most supportive family, that first year was incredibly lonely at times.”
Embracing the situation
Only a couple of years before Nicky was diagnosed, she and Gary had moved from the south east to the north west of England to be closer to family. This meant Nicky wasn’t forced to share her news before she was ready.
“Had I been where we used to live, people who knew me would have known something was different with me,” says Nicky. “But people up here didn’t know how I was before."
Last year, Nicky joined her local church choir, which she loves. “The choir knew from the word go about my Parkinson’s. That was lovely. For the first time, I could go and just enjoy it, rather than masking something, like how slowly I turn a page in a book. I’m always conscious that if someone doesn’t know, what are they thinking about me?”
Then 2 years ago, Nicky used her Facebook page to share her diagnosis with her whole network. “I like to think the more you do it, the easier it becomes. I mean it’s never going to be easy, of course it’s not. But as soon as I put it out there, I embraced it a bit more.”
The choir knew from the word go about my Parkinson’s. That was lovely. For the first time, I could go and just enjoy it, rather than masking something, like how slowly I turn a page in a book.
Keeping going
Despite Nicky’s new approach, life with Parkinson’s is not without its challenges. “I still get good days and bad days. On a good day, I might think, ‘Yes let’s go for this!’ But it’s very easy on some days to wonder, how am
I going to do that?
“On those days, I play lots of music. I let myself dance and it uplifts me. So I try to pull myself out of it and keep thinking about the good things that are going to come,” she says.
“Don’t get me wrong, I am scared about what the future may hold. But I’ve said to my family this year, we’re not going to think about the future. We’re going to live for the moment and seize every opportunity.”
Nicky is now a member of the Research Support Network at Parkinson’s UK and modelled in Catwalk to a Cure. This year she is reducing her hours at work to get more involved with the Parkinson’s community and she’s persuaded her church to light up blue for World Parkinson’s Day.
“Of course I would sooner not have Parkinson’s, but I always believe that if a door opens then keep going through it - who knows what’s on the other side?”