Living with Kennedy's Disease | Meet Bernie
April 15, 2025
Bernie Detering is many things. He’s a proud dad to two ambitious children, a devoted partner to his wife of almost 30 years, a talented character actor, a lawn bowler, and an optimist.
In 2024, after several years of cramps, tests, and speculation, he was given anew descriptor: Bernie is a person living with Kennedy’s Disease.
Kennedy’s Disease, also called X-linked Spinal Bulbar Muscular Atrophy, is a rare inherited disorder that causes muscle weakening and wastage. It’s caused by a genetic mutation on the X chromosome, and the onset of symptoms is typically noticed between the ages of 35 and 40.
Diagnosed in his late 40s, Bernie’s found that he’s not only integrating this new label into his present identity, but his understanding of his entire life.
“I’ve always been really active—always out in the garden, loved my sport, my lawn bowls, I’d go bushwalking, and rarely sit down to do something like watch a movie. But I’ve also always been more easily fatigued than the people around me. I’d do something, and then I would sleep. I just figured that was me: I work really hard, then I cope by having a rest. But no, it was an underlying part of living with Kennedy’s.
Now that the symptoms have really set in, I’m having to create a new normal. And that’s scary, but it’s also exciting.
I liken it to being on the stage, standing at the edge, not able to see because the lights are in your eyes, and it’s going into that second act. I’m preparing for that second act. I don’t know what it is, but I’ll do everything I can to put a great show on.
For example, when the OT was organising mobility scooters, I asked for one with off-road tires so I can do some photography and get into nature that way, instead of through my bushwalking. I don’t know what my life is going to look like, but I suppose I didn’t really know prior—I just thought I did.”
There’s one thing about Bernie’s life that’s certain: MND Victoria will be here for him throughout it.
Due to the similarities in presentation between MND and Kennedy’s Disease, MND Victoria is committed to providing care and support to people living with either disease.
“I feel like I’ve become part of MND Victoria now. I remember being diagnosed and having my first call from an Advisor, and they opened up a whole new world of support to me.
From that initial call to face-to-face sessions with my Advisor, counselling, and the array of equipment I’ve had so far; the support is incredible. But bigger than any individual thing, it’s just knowing that somebody is there.
It’s scary with all the stuff that’s going on, and simply to always have someone from the team at MND Victoria to say ‘yes, I understand what you’re going through’, that’s been a huge, huge help.”
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