Ben Gee is a 45-year-old father of two children, Lois, 14, and Austin, 12, whose practical approach to life kicked in when he was diagnosed with Young Onset Parkinson’s at age 41.
For Ben, this meant working out what was important to him and working harder than ever to build a future for his family. Before his diagnosis, Ben says he “didn’t know anything about Parkinson’s and what it meant for me and my life.”
Nonetheless, Ben runs a five-strong estate agent group called Hat & Home and a mortgage brokerage today. Together with his family, friends, and colleagues, he has raised over £100,000 for Parkinson’s UK.
“At 40 years old, I noticed my foot folding beneath my leg and cramps while training for half marathons. Two years of different tests, misdiagnoses and surgery resulted in me eventually seeing a Parkinson’s specialist.”
While he was at work, a call from that specialist in February 2020 led Ben to finally understand that his suspicions were correct, just as the pandemic took hold.
“I was 41 then, and it was a bit of a shock. I was told you are going to see somebody because they suspect you have Parkinson’s. So, your brain starts getting used to what that is, but you don’t think it could be that for one minute because you’ve already been told numerous times it’s something else.”
Up until that point, the only knowledge Ben had of how Parkinson’s presents was a tremor and its prevalence in older people. On speaking to his neurologist, Ben was thrown into turmoil for 24 hours and admitted that telling his wife Jacquie was more nerve-wracking than the diagnosis.
I told my wife, “I have this thing, we have to find out what it is. Tears were shared because you don’t know what the future holds and think the worst. All we read was ‘progressive, neurological, gets worse over time, gives you dementia’.”
Ben and his wife Jacquie spent the next 24 hours educating themselves on the condition while they decided how to tell their children.
“One of the many reasons I am such a big advocate for Parkinson’s UK is the information and education you get during that early diagnosis stage. Within a few days, I got some books from the charity that were age-appropriate for my children. They were really good.”
At the time of diagnosis, Ben and Jacquie’s children, Lois and Austin, were 10 and eight, which they considered when telling them about the diagnosis.
“They were young enough to not understand but old enough to be honest with,” says Ben.
“I expected devastation and tears, but they took it brilliantly. It was like water off a duck’s back. They only had one immediate question – was I going to die? Then it was back to asking what’s for dinner.”
Despite the family talking about the condition over the weeks that followed, Ben was determined his diagnosis of Parkinson’s wouldn’t define them. It was important to him and Jacquie that the family ‘get on with life.’
This attitude prompted Ben to start an estate agency and financial services business, calling upon his successful career in the sector. “I didn’t start the business after Parkinson’s, but because of Parkinson’s. This is a legacy for Jacquie and the children,” he says.
Ben is very driven, and establishing the business has seen him work harder than ever. However, he accepts that his approach has sometimes insulated him from the reality of his Parkinson’s diagnosis.
“The medication I take for my Parkinson’s has heightened my compulsive traits. It can also mean I keep going when I really should stop. I sleep for about three hours a night – insomnia is an absolute killer for me.”
He adds, “I know I shouldn’t be on my phone or computer before bed, but I work in the evening, and then I’m thinking about the next day. I don’t think that helps me, if I’m honest.”
Despite this, lifestyle is important to Ben. He complements his Parkinson’s medication with exercise, attending the gym no less than three times a week, and taking regular walks. He still, however, remains pragmatic about what the future holds.
“When I was first diagnosed, I was like ‘I’ll beat it, it’ll be fine, we’ll find a cure,’. Now I wonder what it’s like when I won’t be able to use a mouse or if I’ll not be able to walk. I’m not defeatist, but realistic.”
“Speaking out is my playground, I love it. Hopefully, I can create a bit more awareness. I believe knowledge is power. Everyone seems to know someone with Parkinson’s.”
About Parkinson’s and Parkinson’s UK
Parkinson’s is what happens when the brain cells that make dopamine start to die. There are more than 40 symptoms, from tremors and pain to anxiety. Some are treatable, but the drugs can have serious side effects. It gets worse over time, and there’s no cure. Yet.
To find out more about Parkinson’s and Parkinson’s UK, visit parkinsons.org.uk.
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