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Kell’s ride to raise awareness of frontotemporal dementia (FTD)
A recently diagnosed FTD patient takes on a dream challenge
Greg Kelly was recently diagnosed with FTD at the Brain and Mind Centre. Far from letting the illness overcome him, Greg is combining his passion for bikes with his desire to raise awareness of the disease.
You can always tell when a Harley-Davidson is coming down the street. Now adrenaline junkie Greg Kelly is hoping to use the bike’s power to put the spotlight on frontotemporal dementia (FTD), the second biggest killer in Australia after heart disease. He is planning to ride a Harley across Australia, New Zealand and the United States, after being diagnosed with FTD at the University of Sydney’s Brain and Mind Centre earlier this year.
"I think awareness of this condition worldwide is low, so I’ve made it a personal challenge to put it in the spotlight,” says former financial executive Greg. The condition involves the loss of neurones in the brain and can have a significant impact on behaviour, emotions, communication and memory. Scientists are yet to find a cure, something Greg hopes to change by donating the funds raised by his ride to research teams across Australia.
Greg has always been a keen biker, so a bike tour across three countries was a natural way for him to achieve his aim – plus it seemed a little safer than kitesurfing around Hawaii, his first idea. “I thought that if I can get the huge worldwide biker community on board, this would be a great way to raise awareness,” explains Greg. “Plus I’m very passionate – I don’t do things by halves.”
“I hope people with connections to the media and TV can help to get the message out there, because I want use my remaining time to change the way people think about dementia. It's not just an old people’s disease, but it can affect much younger people too, and it’s terminal.”
“I’m most excited about the opportunity to talk to communities I visit along the way, to inform them about this condition. My sponsors are helping out with a BBQ every afternoon, which should be a great way to meet local media, supporters and VIPs.”
Greg himself had never heard of the condition before his diagnosis, although had long suspected he had a form of dementia. “We saw a current affairs program on TV about concussion in football players, followed by a special about Robin Williams”, says Janet, his wife. “After watching those, we felt sure that Greg had some type of dementia, as he had 13 concussions during his childhood and early adulthood from his time as a competitive cyclist.”
Despite their suspicions, Greg and Janet were unable to confirm a diagnosis with several specialists, and Greg was misdiagnosed with depression. The side effects of the anti-depressants severely reduced his quality of life, but eventually after visiting another specialist Greg was referred to the Frontier Clinic at the Brain and Mind Centre, and was diagnosed with FTD in February of this year.
“My experience with Frontier was amazing - very informative and gentle with dealing with the fact that FTD is a terminal disease,” says Greg. “I recommend anyone with younger onset dementia to be referred there if possible.”
“Getting this correct diagnosis was crucial for me – as a boxing enthusiast it’s important to me that I know my enemy and what I am fighting mentally and physically.”
Thanks to the diagnosis, Greg has also been able to make some changes to his diet and start to practice brain exercises. Janet has also researched complementary therapies that help him to get through each day.
Greg and Janet are now in the final planning stages for the trip and are still looking for sponsorship for fuel, food, flights and some of the accommodation. If you can help or know anybody who can, please contact Greg and Janet, or donate now. You can also follow Greg’s progress on his Facebook page.