Finding local support: Winston's story

“I retired in 2018 after many years working for St John Ambulance,” he explains. “I noticed a tremor around 2019, and finally had it looked at in 2022. After scans, appointments with neurologists and observations, I was diagnosed with Parkinson’s. 

“It was a whirlwind of emotions. And it slows you down - for someone like me who has been very active over the years, that came as a blow.” One of the hardest things for Winston to deal with is the unpredictability of symptoms from day to day.

When it comes to managing symptoms, Winston describes his core team as a triangle: himself, his Parkinson’s nurse and a physiotherapist. “When I started taking medication for Parkinson’s, the side effects were pretty bad, so it was really helpful to be able to speak to my Parkinson’s nurse almost straightaway - I didn’t have to wait 3 or 6 months to see the neurologist,” he says. 

“Her help is invaluable, and we can discuss anything and everything. When new symptoms popped up, she helped me work out whether it was caused by Parkinson’s or something else, and helped me to see a physio.

“I have a good rapport with the physio and neurologist, and that helps me to relax. When I attend appointments they always listen and explain things clearly and that has definitely helped with the management of my Parkinson’s. My neurologist and I have good discussions about my meds, and any changes they think would help. I’ve previously had an operation on my back and also a knee replacement, and the physio has also helped with that as well as problems associated with Parkinson’s.” 

Someone who understands 

As well as a team of specialists, Winston has found support in a community of people affected by Parkinson’s. “People don’t always see what’s happening to me, or what Parkinson’s looks like on me. They don’t see me early in the morning. They see me looking nice and managing the condition as best I can. But I have to deal with my own bubble sometimes, and it gets burst, and things go all over the place.” 

Not long after he was diagnosed, Winston found the Lewisham Parkinson’s UK support group. He remembers: “The people were very welcoming, and they were openly discussing their conditions. It was comforting to know that the symptoms I was experiencing were also felt by others there. And yes, the usual tea, coffee and biscuits are always nice too!” 

Now, 3 years after his diagnosis, Winston is providing the welcome that meant so much to him in the early days. “I believe in outreach,” he says. “There are people in my neighbourhood who were recently diagnosed, and they know they can call me. It’s important to find a person you can relate to. Parkinson’s presents so many different symptoms, so almost every experience is different. But just having someone say, “I am here for you,” makes a big difference.” 

He likens it to Hands Across Barbados, an event that happened while he was living on the island in 1979. “Locals and visitors came together and held hands around the island. You didn’t know whose hand you would be holding - you just turned up, and made a connection. I think of Parkinson’s the same way."

Winston has also joined a small group of walkers with a variety of health conditions which meets once a week in a local park. “It’s good for your discipline: if you’re not at the start point at 10am you’ll have to catch up!” Winston laughs. 

“People walk at all kinds of speeds, and there are volunteers at the start, middle and end of the group. It’s not a race: we all do as much as we can on the day.” That attitude has carried him through much of the last few years. 

“I’ve learned that I don’t live to control my Parkinson’s - I just learn to live better with it. That means taking my medication on time, going to the park, joining groups like the Toastmasters, and walking with others - not being alone.” 

Winston says: “I’ve started playing the harmonica to help with my breathing. And it’s good for my brain too: sometimes I look up a song on YouTube and see if I can play along. I don’t want to be dull and lethargic, but to make use of everything I’ve got."

Speaking up

People with Parkinson’s may have problems with their voices. But Winston has been training his voice for many years. On holiday in Ottawa, back in the late eighties, Winston was invited to a meeting of the local branch of Toastmasters International, an organisation that teaches people how to speak in public, control their body language, and deal with audiences. 

“I didn’t really plan to get involved!” he smiles. “A big part of the meeting is getting feedback from other members. A lot of people don’t like critique, but it’s really crucial if you want to improve your skills.”

Winston's public speaking tips

• Start strong, with a quote or something to get the audience engaged. 
• Preparation is key. When you rehearse, use a mirror to check how you stand, smile and look around at the whole audience. 
• Don’t start by taking a big nervous breath - do this offstage before you start to get rid of tension. 
• Pause and give people time to reflect and think before you move on. 
• Try to stay positive, even when you make a mistake. I still make mistakes, even after so many years, but that’s how you learn to do it better next time. 
• Don’t ask your partner or friend to give you feedback - they’re too close to you to be honest! Try asking a work colleague or someone who doesn’t know the subject well.

Read more speech and communication tips for people with Parkinson's, their family and friends.