Too young for Parkinson’s? What it’s like being diagnosed in your 30s and 40s

Ahead of World Parkinson’s Day on April 11, Abi Jackson talks to two people living with early-onset symptoms.

Parkinson’s affects younger people too (Kuhan/Handout/PA)

Since being diagnosed with early-onset Parkinson’s, a lot has changed for Kuhan.

The former project manager from south-west London was 38 when diagnosed with the condition – where parts of the brain become progressively damaged – 10 years ago. Since then, he has ditched office life, discovered a passion for nature and spends a lot of time in the New Forest, and he’s taken up photography.

“It’s one of the quirks of the condition that dopamine, the chemical in our brains that people with Parkinson’s lack, not only controls mood, motivation and movement, it controls our creative instincts as well,” explains Kuhan, who credits his Parkinson’s medication for bringing on his newfound artistic streak. In fact, he says photography has become “a bit of a compulsion”.

This isn’t entirely unusual. Impulsive and compulsive behaviour is a recognised potential side-effect of certain medications used to help manage Parkinson’s.

In some cases, it can be very problematic, leading to compulsive over-spending, for example. But for Kuhan, photography has brought “reward and enjoyment” and given him “an output I can look back on and take some pride in”. It’s also connected him with the outdoors.

“I never really appreciated the outdoors before, I was always a city boy, spending time in nature was an alien concept. Now, I very much appreciate the outdoors,” reflects Kuhan, who says this has become “essential” for his wellbeing.

“There’s some research from Harvard recently that looked at hospital records of thousands of people with Parkinson’s and, through some analytics, concluded that people living in close proximity to green and blue areas – parks, forests, woodlands, lakes, rivers, oceans – fared much better in terms of their disease progression than people in urban environments.

“I can very much feel that,” he adds. “I can literally breathe when I’m outside London, and my symptoms are just much better.”

Gathering information like this has been a lifeline. Parkinson’s is progressive and often comes with a lot of uncertainty and misunderstanding. It can also bring a big sense of isolation – particularly for people diagnosed at a younger age.

There are different types of Parkinson’s, but the condition is generally associated with a loss of nerve cells that make dopamine. This leads to a wide range of both motor symptoms (such as tremor, stiffness and slowness of movement) and non-motor symptoms (including pain, fatigue, sleep problems and mood/mental health changes). There are more than 40 recognised symptoms in total, and how they present can be very individual. It’s also often unclear what causes it.

“Researchers think it’s a combination of genetic and environmental factors that cause the dopamine-producing nerve cells to die,” says Dr Rowan Wathes, associate director at the charity Parkinson’s UK. “There is still much to learn about why certain risk factors seem to have a greater effect on some people but not others.”

Around 145,000 people are living with the condition in the UK – and one in 20 develop symptoms before age 50, otherwise known as early-onset or young-onset Parkinson’s. Yet, there’s still a common misconception that it only affects older people.

“There’s a lot of misconceptions about Parkinson’s in the wider public, but also within the medical profession,” says Kuhan. “My GP didn’t really put two and two together – a relatively healthy 38-year-old presenting with a tremor, Parkinson’s never really crossed his mind.”

After initially being told there was “nothing wrong” and then being misdiagnosed, it was almost a year before the possibility of Parkinson’s came up. Once he did know what was going on, getting the answers and support he needed was another matter.

“When I first got diagnosed, I went to a local support group that was meant to be for young people. But I was the youngest there by some distance, everybody was over 60 – very nice people, but all at different stages of their life and in different stages of the condition,” he says.

Parkinson’s UK says this is something the charity often hears from people with early-onset. For Kuhan, it just added to the sense of frustration and fear over what the diagnosis meant for someone at his stage of life – when you’re still very much in the thick of work, relationships and, for some people, having children.

York-based Kimberly Campanello, 42, who was diagnosed with early-onset Parkinson’s in 2021, has encountered similar challenges. She says not knowing “what the future holds” has been one of the hardest things.

“You really don’t know how exactly it’s going to manifest, because Parkinson’s has so many symptoms. You don’t know whether medication will work for you – and if it does, for how long? You don’t know if you’re going to need something like deep brain stimulation [a surgical treatment option].

“So, you’re kind of like, what’s the next 10 years going to look like? It changes everything about loads of things. How you plan, how you think about what you might be doing.”

How it would impact her work was a big concern. “And that’s a continuous fear,” adds Irish-American Campanello, who is a poet and associate professor of creative writing at University of Leeds.

“I teach and give poetry readings and I get in front of hundreds of people, and Parkinson’s can be really hard to control – you lose control of the nervous system – and I have a tremor.”

When returning to in-person teaching and events after lockdown, she was initially fearful about getting back out there. “And I still am – but I’m doing it anyway,” she shares.

“I am very open with my students about it, and with the public when I give a live poetry reading. There’s no point trying to conceal it. And my students have been brilliant, my colleagues, my head of school, my trade union, everybody’s been really supportive.”

For Kuhan, reaching a point of openness took longer. “For a long time, I just didn’t face it,” he says. “It’s only really in the last few years that I have become more open.”

Through a local charity (ins.org.uk), he eventually got access to a physiotherapist, occupational therapist and counsellor. Connecting with these services and having a more proactive, holistic approach to managing the condition was “a real eye-opener – because until that point, I was just battling with it”.

Now, he co-hosts a podcast (2 Parkies In A Pod) with former Sky Sports presenter and Parkinson’s UK ambassador Dave Clark, and runs a weekly support group for fellow early-onset folk.

“I’m not normally one for talking about myself, but I realised that actually there’s a value in doing so,” he says. “Because if I’d had somebody that was there to talk to 10 years ago, who looked like me, similar age and outlook, I think my journey over the last decade would look very different.”

Campanello is also keen to emphasise the importance of managing her Parkinson’s beyond medication. For example, being assigned a Parkinson’s nurse has been “invaluable”, and taking up an exercise regime that includes strength training and neuro-physiotherapy has been transformative – both for managing symptoms and providing a psychological boost.

Like Kuhan though, these are largely things she’s had to reach out for herself. She knows “not everybody’s able to do that”, and postcode lotteries mean services can be hit and miss.

“I do feel I’m really privileged, in a way, I have a really good job, a lot of support. And I’m a noisy American academic, who uses language for a living. Not everybody has that. Part of why I want to do Parkinson’s advocacy is because I can do that.”

Creativity isn’t new for Campanello, but since her diagnosis, it’s taken on even greater meaning.

“Parkinson’s can have a clarifying factor – it makes you realise what’s really important – so it’s just made me love poetry even more,” says Campanello, who recently had a poem about her Parkinson’s, called Moving Nowhere Here, published in literary magazine Granta.

“I already loved it, but now it is this wonderful elixir, a bit like exercise.”

For more information and support, visit parkinsons.org.uk