Creating a legacy - Ben's story

When Ben noticed his foot folding beneath his leg and cramps while he was training for half marathons, he was 40 years old. Two years of different tests, misdiagnoses and even surgery, eventually led him to a Parkinson’s specialist.

“You’re told you’re 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 for one minute it could be that because you’ve already been told numerous times it’s something else.”

But when Ben’s neurologist called him at work, he finally understood this time the suspicions were correct. With his practical hat on, he’d already done a fair amount of research by the time he got home that night.

“It’s amazing what you can find out in a couple of hours,” Ben says, smiling wryly.
 

“I was more nervous about telling my wife, Jacquie, than I was about getting the diagnosis,” Ben admits. “There were lots of tears and uncertainty. Together, we knew we had an uphill battle and had a lot to deal with, but our primary focus was what it meant for the kids.”

At the time, Ben and Jacquie’s children, Lois and Austin, were 10 and 8. “Young enough to not understand, but old enough to be honest with,” says Ben. The couple sat down with the children soon after receiving Ben’s diagnosis.

“I expected devastation and tears, but they took it brilliantly. It was kind of 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.
 

Soon afterwards, Ben started an estate agency and financial services business, after building a 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 adds.

For an already driven individual, establishing the business has meant that Ben is now working harder than ever.
 

Ben concedes that his approach has sometimes insulated him from the reality of his Parkinson’s diagnosis. The medication Ben takes for Parkinson’s has heightened his compulsive traits, and he admits not enough stops him in his tracks, even when he should take more notice.

“I sleep for about three hours a night - insomnia is an absolute killer for me,” Ben says. “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 I help myself if I’m honest.”

A particularly challenging aspect of Parkinson’s has been the mental health symptoms Ben’s experienced. “I’m one of those people who will openly admit that I never quite understood depression. I’d think how could someone be like that - why can’t they just snap out of it? Until I felt these feelings myself, I didn’t appreciate what a physical thing it was.

“Anxiety is on your chest. It feels tight. You’re worried about things when you know you have no reason to be worried. I can feel very vacant sometimes and I really struggle with that.”

As a fluctuating condition, it can be difficult to feel in control of Parkinson’s all the time. So how does Ben deal with this? “It does my head in,” he admits.

“Moving more slowly than I used to is difficult for me. For example, I can’t use a mouse as well as I used to, or as quickly. My brain is telling me I am perfectly capable of doing something, but my body isn’t following through - it’s that imbalance that I find frustrating.

“But I don’t worry about things I can’t control. People ask if I’m scared of the future - and of course I am. But I’m not going to worry about it because worrying doesn’t do anything.

“Parkinson’s is the best thing to ever happen to me. I wouldn’t have the business and friends around me I have now, or the humility. I wouldn’t be doing the things I’m doing now unless Parkinson’s had forced me into it. 

“I didn’t realise that for two years. It was always there, I just didn’t see. But I am very confident to say that now - and what a gift that is.”