Above: Des and Barbara Catherwood celebrating their 10-year wedding anniversary in 2013, shortly before Des’ first symptoms of Huntington’s disease appeared.
When Des Catherwood started losing his balance and having trouble manoeuvring around, he knew it was the result of the flawed Huntington gene he had inherited from his mother and grandfather.
“My mother had Huntington’s disease,” explains Des. “She was in a wheelchair and lived in a nursing home for 20 years. My grandfather was in a wheelchair too. Sadly, he took his own life. There wasn’t the help available that there is now.
“Because I knew of my mother’s symptoms, I was aware of what to look out for as I started ageing. I was 59 when I first noticed issues with my balance. I’d seen my mother experience the same so I knew what it was.”
This was in 2014, but Des wasn’t formally diagnosed with Huntington’s disease (HD) until 2019.
At the time, Des was working as a yard manager at a Mandurah car dealership. “I kept the Huntington’s to myself for quite a while and then resigned when things became too difficult – I could tell my memory was starting to go.”
Reflecting on International Huntington’s Disease Awareness Day (15 May), Des says there’s work to do in raising awareness of the condition. “The biggest issue is there’s not enough in the way of information. HD symptoms are so close to other neurological conditions that the diagnosis can get missed. I knew it was HD because of my family history, but even my own doctor had to go away and do some research on it.”
Fortunately, after initially struggling to find the right support, Des was recommended to contact MSWA and he has been a Client for almost two years.
“MSWA has helped me no end. I see an Exercise Physiologist, the Occupational Therapy team installed rails in my bathroom, and the MSWA Aged Care Coordinator has helped me and my wife, Barbara, arrange our care packages.”
Barbara and Des have been married for 19 years, and she is now also his carer. Des has two sons and grandchildren. His family is the reason he’s motivated to stabilise his Huntington’s disease.
“I’ve been attending exercise physiology and physiotherapy for two years and I’ve recently shown marginal improvement, which is incredible. I know I’m never going to reverse the HD – there is no cure – but you have to work at it. At the end of the day, I’ve got a wife, kids and grandkids to look out for.
MSWA Exercise Physiologist, Kade Zur, explains, “I see Des for one-on-one exercise physiology once a week. This support has enabled him to maintain his strength, walking capacity and balance to continue confidently enjoying his life at home and engaging in the community socially and physically.”
Des also plays carpet bowls three days a week and goes on regular walks.
For those newly diagnosed with HD, Des advises, “Do as much as you can to build up your lower body strength. Try and stay out of a wheelchair for as long as you can. Stay positive.”
He reiterates, “Stay out of a wheelchair – that’s my motto.”
Find out more about support and services available for people living with Huntington’s disease.