‘You just carry on’: Living with a rare, degenerative brain condition at 74

Imagine not being able to read, write or even pour yourself a glass of water. They’re parts of life many of us take for granted. You sit down with your coffee or tea in the morning, read your emails or the latest catalogue and jot down your to-do list.

At least that’s what a lot of people do day-to-day. But not Richard Kuipers. The businessman has been forced to learn the basic skills of everyday life again in his senior years, after being diagnosed with a debilitating brain condition that you probably haven’t even heard of, while also battling prostate cancer, diabetes and melanoma.

But when asked how he has managed to get over the massive speed bumps life has thrown at him, Richard simply said: “You laugh it off a bit, think ‘here we go again’ and just carry on.”

The biggest of Richard’s battles began in 2014. At the time (and still to this day) he was the owner of successful moving company Two Men and a Truck and life was going swimmingly. Then he was diagnosed with what’s known as Posterior Cortical Atrophy (PCA for short). It’s a progressive degenerative condition, which involves the loss and dysfunction of brain cells, particularly at the back of the brain, which hampers communication between the brain and eyes.

It tends to be misdiagnosed as Alzheimer’s in some cases, as many of the symptoms are the same, but PCA is a rare neurodegenerative condition that affects only a slim proportion of people around the world. Some have an inability to perceive more than one object at a time, others have difficulty spelling or working out mathematical calculations, and sometimes people even experience hallucinations. Above all, like with Alzheimer’s, PCA can be anxiety inducing, because you may feel as though you’re losing part of yourself.

For Richard, the condition developed slowly, with basic tasks becoming more difficult over time, but neither he or his family could put their finger on the exact cause of the problem. The doctors were stumped too.

“I always knew something was wrong,” his wife and business partner Cheryl said. “[But] nobody could tell us what was wrong. The specialist wasn’t much help. So we went to the GP and I said ‘we need an MRI of Richard’s brain’.”

It was then they learnt the bad news. Richard’s brain cells at the back of his brain weren’t functioning properly, instead they were fluctuating. Day-to-day, minute-to-minute they were going up and down. There was no consistency as there should have been. And this ultimately changed Richard’s life forever.

He went from flying around the country as the pilot of a four-seater plane, to having his loving wife as his carer, helping him complete tasks that were once a basic part of life.

“Richard can’t read or write without direction, he can’t put a plug into a power point, he can’t pour a drink properly, his depth of perception is difficult,” Cheryl explained. “There’s all these little things he just can’t do anymore. There’s no more driving or flying. He got his pilot’s licence just prior to his 60th birthday and we’ve flown all around Australia in a four-seater plane several times, but not anymore.”

The worst part is, like Alzheimer’s, there are no treatments for PCA, so it’s just something that Richard has had to learn to live with. He has special tech devices with larger writing to help with reading, he has moved to a home with greater accessibility, he attends events to help improve his speech, and he’s constantly doing online courses to help keep his brain active. What’s more, he does all of this with a smile on his face and a positive attitude.

This is despite having also being diagnosed with prostate cancer in his late 60s. Like many men, he didn’t have any symptoms, but with his father and two brothers having battled the illness, Richard knew the importance of getting regular checks. In his words: “It’s better than it being the end [of your life]”.

“I knew that it was hereditary and … I always made sure to get checked,” he explained. “Then after an MRI when I was 67, I was diagnosed. I went through the treatment but it’s pretty horrendous. The hormone treatments give you hot flushes, it’s not easy. The whole treatment is pretty embarrassing.”

However, with his strength and the support of his wife, three kids and grandchildren, Richard was able to come out the other side, like many men do after early detection of prostate cancer. He is now completely free of cancer and he’s making the most of his days with his kids and grandkids.

Like his wife Cheryl said: “Life begins at 60,” and that’s certainly how Richard sees it too. With much of his business now in the hands of his children, the father spends his time travelling with Cheryl, doing the online courses and giving back to others through charity work, including taking part in the Vinnies CEO Sleepout – to support those facing homelessness.

“Richard has a very full life, he has lots of things he can’t do, but he compensates,” Cheryl explained. “He has been teaching the twins [grandchildren] to play bridge and our little grandson to play chess. We go on lots of cruises and we’ve got three booked next year and the following year. Richard goes skydiving as well.”

With Cheryl’s help, Richard has even just published a book, aptly titled Outside the Box, about his incredible life. It covers his early days living in Holland as World War II broke out, to his move to Australia with just a few pennies in his pocket, the start of his business Two Men and a Truck, and his many health battles. For the businessman, it’s a way to help share his story with his grandchildren and the generations to come.

“I have been very fortunate in my life, both professionally and personally,” he said. “I wrote this book so that my childhood and family history, as well as my adventures and important life lessons, would be recorded for my growing family and remembered for years to come. My family is my greatest legacy and my greatest achievement.”

Outside the Box is a must-read. It’s an inspiring tale of a young immigrant’s grit and determination, dappled with Richard’s infectious humour and zest for life. It was released this month and is available for purchase from Amazon and via Richard’s website.

IMPORTANT LEGAL INFO This article is of a general nature and FYI only, because it doesn’t take into account your personal health requirements or existing medical conditions. That means it’s not personalised health advice and shouldn’t be relied upon as if it is. Before making a health-related decision, you should work out if the info is appropriate for your situation and get professional medical advice.