"I try to use Parkinson’s as an opportunity" - Kuhan's story

Kuhan described himself as a happy-go-lucky chap for whom the world was his oyster before he was diagnosed with Parkinson’s, aged just 38. The shock was seismic.

But a decade on, Kuhan has a new sense of perspective. “In a lot of ways, I now try to use Parkinson’s as an opportunity - that’s something I wish I had appreciated from the beginning,” he says. 

Kuhan spent a year trying to understand what was causing the tremor he’d developed before he finally learned he had Parkinson’s. He admits: “My diagnosis left an impact on me in many ways.”

One such impact was his desire to not let the diagnosis rule his life. “That was a useful strategy in itself,” reflects Kuhan. “But not when it crosses over into denial, which it probably did for me.

“I’d think, ‘I can’t have Parkinson’s. I feel fine.’ It was difficult to get my head around. So I didn’t really talk to people and was quite secretive about it.”

Fast forward 10 years and Kuhan now presents the 2 Parkies in a Pod podcast with his friend Dave Clark, the former Sky Sports presenter and a Parkinson’s UK ambassador.

“It’s strange isn’t it? I went from telling nobody to telling everybody,” laughs Kuhan. “But as my condition has progressed, so has my outlook on life.” 

The value of a Parkinson’s buddy is huge, and in a way the podcast is an extension of that.

A problem shared

Kuhan and Dave met after Kuhan realised they lived near to each other and reached out to Dave on social media.

“Dave was the first person with Parkinson’s I had met since year 1 or 2 of my diagnosis,” says Kuhan. “Helen, my partner, always jokes with me that when I went to meet him for the first time, I was like a teenager going on a date!

“But it’s not often you come across someone who has Parkinson’s, is of a similar age and has a similar outlook on life. Now Dave and I can just have a chat and a moan and we understand each other. The value of a Parkinson’s buddy is huge, and in a way the podcast is an extension of that.

“It’s quite surreal because I always wish I’d had someone like me to talk to 10 years ago. Now we get a lot of feedback from our listeners echoing that and you can feel the impression it has on them.”

Understanding more

As Kuhan started to talk more, he also wanted to learn more about the condition. 

“I know that sounds strange after so many years, but I really didn’t know much at that point. So I got more engaged with research, which I had been oblivious to before.

“When you’re talking to specialists at the beginning and their best answer to questions like what’s my life going to be like in 5, 10 or 15 years is ‘We don’t know,’ a disillusionment sets in,” admits Kuhan. “It made me think, ‘No one can help me here, it’s down to me.’

“Now I get to meet other people with Parkinson’s, neurologists and researchers. I’ve had some real eureka moments when I learn about something that I’ve experienced.”

His exposure to the world of research and realising the importance of self-care, has led to Kuhan developing Parkinson’s ON, a free app, which can help track symptoms, manage medication and offers a range of self-help content. He hopes it will allow people to feel more in control and informed about their condition.

“Using the app, I’m more aware of what makes a good day or a bad day. I can see the impact of taking medication on time, for example, or how important sleep and exercise are. It sounds obvious, but there’s so much going on in Parkinson’s, it can be really difficult to piece it together.

“Over time that data becomes invaluable not only to me as a patient, but also to my doctor and eventually for research purposes. For me, technology is a real enabler.” 

...a Parkinson’s journey is like a grieving process and you have to reach a point of acceptance to see things more clearly.

A positive future

Kuhan talks about life pre- and post-diagnosis - it was an event of that scale and significance for him. But it’s not all been negative.

“Since Parkinson’s, I’ve got a new home, a new line of work and a new partner. All of those things came about because of Parkinson’s.

“Relationships with friends and family are richer. I don’t let life go by in the way I did before,” he says before conceding: “It takes the shock of a diagnosis to give you that perspective.”

Kuhan has also found a way to live with the uncertainty he was plunged into when he was first diagnosed. “If I could have seen back then what I’m like now, I would have taken that. I had a much bleaker version of what the future looked like. If I look forward to the next 5 or 10 years, I take comfort that maybe it’s not going to be so bad.”

Now Kuhan wants to use his experience to help others. Alongside the podcast, the app and research, he also runs a local support group for younger people with neurological conditions and gives talks to medical students about Parkinson’s to help shape their future practice.

“When I was diagnosed all I wanted was a practical way to help myself and to hear from other people going through something similar,” Kuhan says. “Perhaps I should have been doing this earlier. But a Parkinson’s journey is like a grieving process and you have to reach a point of acceptance to see things more clearly.”

A decade on, Kuhan has slowly, but surely, made his way to that point, “So now, rather than giving in, I’m giving back - and I find that quite satisfying.” 

"For me, technology is real enabler."

Parkinson’s ON is available to download through the Google Play Store or the Apple App Store.

  • Next year, we’ll be launching new tools and resources to help people with Parkinson’s explore technologies and devices. The aim is to provide unbiased information to make it easier to find things that can help. Please look out for more information coming soon.