“The car park and my cafe were under water! I felt almost broken…..I could barely go on….My dyskinesia and tremor were off the scale.”
Brendan Quinn. 2019.
Brendan Quinn was thirty-five years old when he received what he called “…the shocking diagnosis of Young Onset Parkinson’s.” I was to interview this inspiring thirty-eight year old, from Flintham in Nottinghamshire, about his recent Deep Brain Stimulation (DBS) surgery and the devastating flood that ripped through his café in Arnold, Nottingham, days before surgery this July.
Brendan appeared on my screen from his car. Brendan owns several small businesses, including his beloved Café Amelia in Arnold, Nottingham; named after his daughter, Amelia, now eight.
“Inside a vehicle is one of the few places I have space to think.”, Brendan chuckled. To learn about Brendan’s early life, I asked him who he was before Parkinson’s?
“I completely understand your question, Dean. Life was different. I was different. Parkinson’s has changed me. I used to work hard and play hard but I was too career driven and materialistic, back then.” I heard emotion in Brendan’s voice. “I’d been an active kid. I’d dreamed that I’d retire at age forty, travel the world and have adventures. Parkinson’s destroyed that dream.” His voice was sad. “My dad, a coal miner, died from heart attack when I was young. I was devastated. I still am. Then, I skipped school days to take on my dad’s gardening round, to help my mum financially. It’s why I became so driven in business. I wanted to improve the lives of the people I love. I took on my mum’s mortgage. A lot of people depended on me and still do. I wanted to be the person my dad would’ve been proud of.” Brendan had revealed what drives him. I asked Brendan when Parkinson’s had entered his life?
“I’d started building my businesses. I was married. My daughter was four, when two fingers in my left hand started twitching.” Brendan raised his hand and demonstrated. “I put it down to stress. Eventually, family suggested I should see my Doctor.” I asked Brendan whether he had suspected Parkinson’s? “No, unbelievably, I’d never heard of Parkinson’s.” He continued. “My GP referred me to Queens Medical Centre in Nottingham for extensive tests.” Brendan sighed. “My results came through. The Neurologist broke the news. I had so little knowledge of Parkinson’s that I thought a course of antibiotics might treat it!” he chuckled. Despite advice to slow down, Brendan started doing more. He attributed this to needing to make his late father proud.
“My first Neurologist suggested I’d be an ideal ‘guinea pig’ for research. Unfairly, I hadn’t even tried the medication available. I declined and sought a new Neurologist; Dr. Gill Fare. She’s been incredible.” I asked Brendan what happened next? “I was initially put on a levodopa patch, which didn’t work. Then, onto Sinemet. For six months my tremors reduced but returned. I was diagnosed with Drug Resistant Tremor. My hopes faded as my symptoms worsened. I developed severe dyskinesia. I desperately tried to provide for my family.” I gave Brendan a moment. “I joined a Facebook based support group called Parkinson’s Road. Their support changed my life. It’s vital to connect with others with Parkinson’s.”
“My Neurologist and I agreed DBS was the only option. I trusted her. Surgery was authorised. I started preparing my businesses and family for my absence. This was a tough time. I was petrified.” I acknowledged this must have been challenging. “I’d heard bad things about DBS but my experience was amazing. I have little memory of the surgery. I remember having to tap my fingers, repeat the words ‘British Constitution’ to test my speech and I was able to jokingly ask whether my head was still screwed on?” We both laughed. I asked Brendan what he would say to anyone considering DBS? “I would say, do it. Don’t be scared. The improvement in me is amazing. I’m now on half of my medication, my tremor is 90% gone. I feel renewed and I’ve grown through this, as a person.” I acknowledged Brendan’s bravery and asked about the flooding of Café Amelia, days before surgery.
“I’d been preparing my businesses for my absence. Completely exhausted, I’d managed to go to a warehouse to pick up six weeks-worth of shop supplies. Colleagues on deliveries called me at 4am one morning. They informed me that Café Amelia had been flooded. The car park and my cafe were under water. I felt almost broken.” Brendan’s expression was pained. “I could barely go on, but I’m stubborn. I’d lost thousands of pounds of stock and vehicles and surgery was just days away. The place was deep in water and filth. My dyskinesia and tremor were off the scale. But for friends Nigel and Toni Rhodes, who helped me clean up, I could have given in.” I asked Brendan what he would say to others with Parkinson’s who find themselves in challenging circumstances?
“You have to force your way through. Push yourself. Don’t sit back when tiredness develops but do ask for help.” I asked Brendan for his philosophy on life, today? “I ask myself what can I do, rather than what I can’t? I focus on today. For the first time in years, I believe in my future. My wife, Alana, has her husband back and my daughter has her dad back.”
Parkinson’s Life online magazine invited me to be a Guest Writer and to send them a story to publish, which I retain the copyright over. I was honoured that they chose this article to publish. They ran excerpts from this article, so what you read above is the full version.
That said, do visit www.parkinsonslife.eu and read the article, there, plus their many other excellent articles and features. Here is the link:
They will value your support and interest in their magazine, which offers a broad range of Parkinson’s related material.
They have invited me to offer them further articles, so do watch out for my work appearing in their publication again, in the future.
(C) Dean G.Parsons. 2019.