"Life hasn't got to stop" - Simon's story
Simon is 41 and was diagnosed with Parkinson’s 6 years ago. The news was life-changing, but Simon’s adapting and learning that life hasn’t got to stop. “You have to take each day as it comes and don’t let it get you down,” he says.
"'Thank you’!” Simon laughs wryly, as he remembers what he said to the specialist who had just told him he had young onset Parkinson’s. “I can’t believe I said that, it just slipped out!”
In reality, being diagnosed at the age of just 35 came as a total surprise to Simon. As a child his mum had worked in sheltered accommodation where several of the residents had Parkinson’s. To him, Parkinson’s was a condition that affected older people - he’d never considered his symptoms were related.
“I had developed a tremor in my right hand, which wasn’t awful, but it was noticeable,” says Simon. “Around the same time I was also starting to stumble a lot.
“After my GP referred me I was determined not to research my symptoms online. I didn’t want to wind myself up. I had a colleague who had Multiple Sclerosis and at one point I wondered if I had that. But I never suspected Parkinson’s, it was just not on my radar.”
When Simon received the diagnosis, he had worked in policing for 24 years, a career that had left its mark. He explains: “I was one of those people where nothing really shocked me anymore, even news like that. When I left the appointment, I knew it wasn’t great news, but then I went back to work. And that’s the first time I had a teary moment as I was telling my boss.”
It was a hard call...If I had a less stressful job, perhaps I could have kept going. But retirement has allowed me to manage my symptoms better.
"...a hard call..."
“For the first 2 years after my diagnosis, it was really business as usual,” Simon recalls. “My bosses and I both had to understand what the future might look like. I found the information for employers on the Parkinson’s UK website and my bosses found that really useful. The clear message was that life can continue, I might just need to adapt.”
As a senior intelligence officer for the police, Simon’s role meant he needed to make decisions quickly. Over time, Simon began to feel those skills weren’t as sharp as they needed to be. “My decision-making had slowed down a lot - and the longer it took me to make a decision, the more the risk was building up.
“It was a high-pressure job. The hours were unsociable and long and it was not always possible to take a break. None of this helped me to manage my Parkinson’s,” he admits. Eventually Simon decided to apply for retirement on the grounds of ill-health and he stopped working earlier this year.
“It was a hard call,” admits Simon. “If I had a less stressful job, perhaps I could have kept going. But retirement has allowed me to manage my symptoms better. Now if I’ve had a busy weekend, I can have a couple of days not doing anything rather than worrying about going to work. As a result, my symptoms have improved slightly.
“Of course, not working has taken me a while to get used to. But I have started to joke that I don’t know how I had the time to work before - life is busy!” laughs Simon.
One man and his dogs
Simon’s main passion in life is showing dogs, which he has been doing at a high level for the past 18 years.
“I look after long-hair breeds. Preparing them for shows is physically demanding. They have 3 baths a week and each bath and groom can take 3 and a half hours, from start to finish.
“On show days, the dogs have to be loaded into the car and unloaded at the venue. They are groomed before they are shown and then I need to walk the dogs round the ring in the show itself. It does take a toll on me.
“I have started looking at getting people in to help me with the dogs before shows and then driving me to the shows on the day itself. I probably should slow down, but for now I’m doing OK.”
In between shows, Simon’s dogs are simply much loved pets and their long walks together have allowed Simon to focus on managing his Parkinson’s. “I used to be a member of a local gym. The personal trainer there was an ex-physiotherapist who had worked a lot with people with Parkinson’s. That was great.
“But sometimes on a bad day, if I felt self-conscious I wouldn’t go. Now I incorporate the exercises I learnt into my dog walks - with 4 dogs barking at 6.30am I have no choice but to get kicked into gear!”
I would encourage anyone who has been diagnosed at a younger age to go along to their local group. Even if people there aren’t close in age, they may be able to introduce you to people who you can identify with.
Creating networks
Simon feels very fortunate to have good friends around him from the dog world, but more recently he’s been creating networks with his local Parkinson’s community.
“About a year and a half ago, before I stopped working, I was in a bad place and had started to blame Parkinson’s for a lot of that,” admits Simon.
“A friend found out about my local Parkinson’s UK group and suggested I go along and meet other people. Even though everyone there was older than me, it did pull me out of a rut.
“The chair of the group wanted me to keep coming along, but also recognised that I could perhaps support other people in a similar situation to my own and that in turn would help me. And that’s how we got the working age group going. It’s been tricky, but we are starting to get the word out.
“I would encourage anyone who has been diagnosed at a younger age to go along to their local group. Even if people there aren’t close in age, they may be able to introduce you to people who you can identify with. The support is out there, you just need to reach out for it.”