ADELAIDE father-of-two Ben Wilson showed the grace and power of a professional athlete during an AFL and SANFL career that spanned almost a decade.
But now he is shaky on his feet and his constant, jerking body movements sometimes cause people to stare.
The former rock-solid, 100kg Collingwood, Sydney and Norwood defender has Huntington’s disease — an inherited, progressive degenerative condition affecting the areas of the brain that control movement, thinking and emotions.
While Ben, 40 in February, is past crashing into packs of hardened footballers, he has not given up on life.
Rather, the St Peter’s College history teacher has turned his trademark determination and intelligence to making the most of his life.
Strengthened by the love of his new partner, Melanie Armstrong, Ben is literally fighting for life with a regimen of a healthy diet, hours of Transcendental Meditation, massage and sweating in the gym.
There is no cure for Huntington’s and symptoms vary but Ben says it is possible to slow the ravages of an awful condition that threatens to claim his ability to walk and talk.
He wants others with the condition to know they are not alone and that help is available so, with his sister, Mardi, 36, Ben has become an ambassador for Huntington’s SA & NT.
When Ben was 23 he watched his 50-year-old father die of Huntington’s and an uncle, 47, succumbed 11 months later.
Ben knew there was a 50-50 chance he had the rogue gene so a year later, and without symptoms, he underwent a genetic test that confirmed what he says he always knew.
Consequently, Ben, who has two children — aged 7 and 10 from a previous relationship — took the “highly emotional’’ decision to conceive them through IVF treatment to stop the defective gene from haunting his family.
“There’s a lot of emotion that goes with that and there’s no Medicare support either,’’ he says. “But it was a huge relief because we could eradicate HD from the family.
“It’s a horrible condition when it gets to that later stage. I was going to see my father but over time he lost the ability to communicate with us.
“It’s very hard to see somebody when they’re going downhill fast.”
Ben says there are about 200 people in SA diagnosed with Huntington’s disease but there are many others who might not know they have the defective gene if symptoms haven’t yet presented.
He has written a blog outlining his story to lift awareness of the disease.
“It’s quite scary, actually — even though I watched my father go through the same thing and his brother,’’ he says.
“I’m cognisant of what’s to come but there’s two camps with this stuff.
“Some people are in denial it’s going on and denial is actually quite a good coping mechanism for a lot of people. My dad was definitely in that camp.
“I wanted to know as soon as I could if I had the condition so that I could manage it based on knowledge.
“One of the benefits of having the test done is so you can make decisions with everything else in your life.
“You can have a productive life with HD and I want to promote that awareness to make life a bit easier for others.’’
Partner Melanie hadn’t heard of Huntington’s disease before meeting Ben but curiosity prompted her to ask about his unusual gait on their first date.
Some people have asked why she didn’t end it there but Melanie saw something special in the man she now proudly says she loves.
“We just have an amazing connection so (HD) didn’t frighten me,’’ she says.
“One of my first reactions to him was of protection.
“None of us knows what life holds so if you disregard somebody because of an illness, you might be missing out.
“Our hope and plan is for Ben to be around for a long time and we’re going to do everything to live with the condition.
“My life now is happy. I do a lot for Ben ... but he does a lot for me, emotionally and intellectually. We’re happy.’’
Huntington’s SA & NT will hold an awareness day at Glandore Community Centre on March 5.
For more information: www.huntingtonssant.org.au
Ben’s blog: www.hopehd.com