"Parkinson's isn't everything" - Nick's story

Nick is 47 and lives in Waterlooville, just outside of Portsmouth. He reflects on how support from his peers has helped him with his diagnosis.

A year before he was diagnosed with Parkinson’s nearly a decade ago, Nick moved from being a matron managing a busy NHS ward to an office-based role within the hospital.

“It’s definitely not an easy job at the best of times,” Nick says when he thinks back to his days as a nurse. "But even after a bad shift, patients are always so grateful.

“Sometimes the best experiences are just helping patients get washed and dressed in the morning and helping them feel more like their normal selves. Knowing you’re helping people makes it worth it.”

When he began developing Parkinson's symptoms though, it began having an impact on his job. 

“I was tired and fatigued. But it was when typing became difficult that I knew something really wasn’t right.” His GP referred him to a specialist.

“I’d already done a bit of googling and I expected it might be Parkinson’s,” he adds. “But it still came as a shock to me when I was given the news.”

It made a huge difference being able to connect with people...

Creating networks

Describing how he was given little information about the condition when he was diagnosed, Nick turned to social media. There he discovered a community of people in similar circumstances. 

One of the people he started talking to was David Sangster, an avid spokesperson for people of working age who have Parkinson’s.

“David invited me to join video calls with other people with Parkinson’s from all over the world. We would chat and share stories and advice. It made a huge difference being able to connect with people that way.”

Nick was inspired by the peer support but frustrated that there wasn’t anything local he could attend in person. So he took it upon himself to set up his own group that he could fit around a 9-to-5 office job.

“I started an informal meet-up called ‘Parkinson’s @ the pub’, meeting once a month in the evenings. Sometimes people would bring their partners too.

“It ended up being a place where not only could you chat about everyday things, but also gain valuable snippets of information. I had a long conversation with one man about how protein can interfere with your Parkinson’s medication and the ways of getting around it. It’s just as much about sharing helpful tips as it is peer support.”

Occasionally I forget I have the condition, then other times I feel like it’s all I ever think about. 

A balancing act

Nick also became involved with delivering First Steps, a Parkinson’s UK programme for newly diagnosed people and their partners. “I think it’s the nurse in me – I feel really passionate about giving people the right support when they need it,” he adds.

But Nick explains that he still sometimes finds it hard balancing living in the moment versus planning for and thinking about the future. 

“Occasionally I forget I have the condition, then other times I feel like it’s all I ever think about. But for me, I think it’s important to remember that Parkinson’s isn’t everything.”

Staying active

Another thing that Nick has found time for since being diagnosed with Parkinson’s is keeping fit. He says he’s now fitter and healthier than he’s ever been.

“I grew up hating PE and running. But I decided to take up couch to 5k last year and I’ve managed to continue running using a secondhand treadmill I bought.

“I also started karate lessons last year, something I’ve always wanted to do. 

“It’s sometimes pretty hard finding the motivation, but I always feel better afterwards. I think it’s also a psychological thing – ‘Even though I’ve got Parkinson’s I can still do this’ – that sort of mentality.”