Perseverance, Parkinson's and paddling: Dario's story
Dario explains how getting out on the water has helped him manage his Parkinson's and stay positive.
The obstacle is the way
No matter how fast the conversation was flowing, Dario Bucceri had always prided himself on being able to take notes just as quickly. But around 2017, he found that it was becoming increasingly hard to keep up with meetings in his management consultancy business, and his notes were getting steadily less accurate.
“It felt like I had a strong rubber band around my right hand,” he explains.
“The harder I pulled away when writing or using a mouse, the harder it pulled me in the wrong direction.” Eventually his clients started to notice that work was taking longer and getting less accurate. Eventually, they and Dario’s wife Sue persuaded him to see a doctor. “The doctor said there was bad news and good news: I had Parkinson’s, but it wouldn’t kill me. Not exactly the positive news I wanted to hear!” he remembers.
Medication made a noticeable difference to the symptoms he was experiencing. However, life continued to become more challenging.
Dario’s handwriting continued to worsen, and he started losing confidence at work. The slightest hint of pressure would set his tremors off, causing him to feel quite vulnerable.
My family said that I looked angry all the time. But in truth, I was suffering with depression, one of the symptoms of Parkinson’s. They were seeing the effects of masking. Parkinson’s was making my facial muscles stiff and giving me a blank expressionless look on my face.
Taking control
Having read Ryan Holliday’s book The Obstacle is The Way, he made a decision: “Even though it might appear that I was powerless to change my circumstances, in reality, I still had the power of choice. I could choose how I would react to my diagnosis and the mindset I would adopt on the journey.
Whatever happened, I would grow through this experience. I would not be diminished by it.
Dario had never been much of an athlete. “I’m more pear-shaped than lean and mean,” he laughs, but in early 2020 he bought a pair of running shoes, and not long after, ran his first marathon to raise money for Parkinson’s UK.
Making a change
His determination to take charge of life made all the difference when the first Covid lockdown was announced in March 2020.
“I had been travelling many miles each week to visit clients, but it was clear I wouldn’t be able to do this forever,” he says. “When we went into lockdown, I saw this as my chance to make some big changes to my business. Every day I got up, dressed for work, went to my home office and rebuilt my business so I could do it all remotely.”
The next big shift was a move to “the most beautiful part of north Wales”, and almost as excitingly, buying a kayak.
The combination of beautiful surroundings and physical activity has been powerful. Dario says: “It reminds me that I have so much to be thankful for, and helps me to keep a positive perspective. I go as often as I can, most Saturday mornings.
"This summer I paddled 10km a day for 8 days as part of a Parkinson’s Wales fundraiser and had an amazing time. You can’t imagine how beautiful it gets on the canals at dawn, it’s magical!
I used to go out alone, but a few weeks ago I fell in while getting out of the boat. So now my nephew Gareth or son Joshua come along too.
Physical benefits
As well as quality time to think and chat, being out on the water gives Dario valuable feedback about his posture: “My tendency to lean to the left is more noticeable when I’m in my kayak. I can feel myself tipping, and the movement of the kayak sparks an instinctive reaction to sit up straight.”
He’s also been adjusting to life after deep brain stimulation surgery (DBS): “I have been incredibly fortunate but it was not without its challenges. At the moment I’m waiting to be called back for stage 2 of the procedure.”
That has meant slowing down the pace of life a little, at least for a while. Dario tends to follow the same routine each morning: “Before my DBS surgery I was usually up at 4.30am to feed the dogs then do my yoga stretches, following an online video. I can really feel the difference if I don’t do it, even for a day. I’ve just started doing exercises with a resistance band twice a week too.”
He also works on strengthening his voice through the Live Loud! voice support programme, run by Parkinson’s UK. Classes run online and in person across Wales, and use tongue twisters, jokes, poetry and stories, as well as breathing and facial exercises.
Changing my questions
Dario says that having a positive mindset has been crucial: “I realised that if I could change my questions, I could change my life. I work hard to constantly shift from a negative to a positive mindset by thinking about questions like ‘What is good for me right now?’ and ‘What will I do to reverse this trend in my thinking?’ I lean into the challenge and hold on to a positive mindset.
“And then of course there is my kayak! Hours spent on the water have given me time to think, to reflect, to apply what I have learned about faith, hope, love and strength of purpose.
“I want to tell people that there is life after Parkinson’s. It’s challenging and can be difficult to deal with but it is not the end of the world. Developing Parkinson’s gave me the chance to change my life for the better. I want to shout it from the top of a mountain: Parkinson’s is not a reason to give up or give in.
“It’s a clarion call to up my game, to try harder, work more creatively, to make something of my life that will be a benefit to others."
Most importantly of all, with every breath I take, I tell myself: ‘I will never, never, never give up’.
Find out more
- Live Loud! Online is a free, fun and social programme to help people in Wales with Parkinson’s who want to practise speaking more loudly and clearly. Find out more about Live Loud! Online.
- Find a Parkinson's support group and exercise class.