This Monday I will be dressing up in an absolutely ridiculous costume and sliding into a pool of ice cold water in front of 100,000 people at the MCG.
Why? well, there’s a few reasons.
Firstly, it’s to raise funds for Neale Daniher’s Fight MND and secondly, it’s because my family has a personal connection to this awful disease.
My Uncle Laurie in Geelong was diagnosed with MND back in 2019.
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Growing up, Uncle Laurie was the caravan guy. He absolutely loved a road trip.
He loved exploring Australia and would drive Aunty Molly and my cousins over to SA to visit us at Christmas time. I always looked forward to hearing about their latest adventures.
Sadly, MND has become Laurie’s roadblock. The disease meant that Laurie had to hand in his license, and sell the caravan.
That’s just one example of how MND can change the path of your life. But ultimately, it’s not my story to tell. It’s Laurie’s story.
So, I decided to do something surprisingly daunting. I decided to interview my Uncle Laurie and Aunty Molly:
Sam: “What were the early signs that suggested Laurie wasn’t himself?”
Molly: “I noticed his voice and speech patterns changing. Some people even asked if he was drunk. He wasn’t. He
had a few little stumbles and falls. And then one big fall off our retaining wall which landed him in hospital.”
Sam: “You were diagnosed with MND in 2019, what went through your mind when the doctor told you?”
Laurie: “I wasn’t entirely sure what MND was. I thought I could get better. I thought I could treat it like a footy injury. How wrong I was.”
Sam: “How has the condition affected your day to day life?”
Laurie: “Walking is just about out for me now. I get around in a mobility scooter. Eating is getting harder, or should I say swallowing is getting harder. Nothing will reverse the process. We love caravanning, but I had to hand in my license because of MND. And we’ve sold the caravan. I did a lung test recently and the doctor advised against flying because of what the pressure could do to me.”
Sam: “When I think of you guys, I always picture you in the caravan road-tripping Australia. I was really sad when I heard you had to sell it. To me, the caravan was symbolic of your passion for adventure. And I know you would’ve loved to take the grandchildren on the road with you as they grow up. How are you coping mentally with adjusting or letting go of some of the things you had planned for the future?”
Molly: “We both just get on with our life and accept that these limitations are our new normal. We focus our energy on each day and try not to dwell on what might or might not happen in the future.”
Laurie: “Things can change so rapidly from week to week, so I try not to look too far ahead. I fully accept it all, but I don’t want sympathy”.
Sam: “It might seem like a strange question, but are there any positives that have emerged throughout your MND experience?
Laurie: “Travel is tough for me now, but my mates make an effort to come and visit me regularly and hang out in the shed, that means a lot.”
Molly: “I guess learning to appreciate each day. and focussing on the things you can do, not just the things you can’t. For example, Laurie is very capable of online shopping. I think he’s on track to be Temu’s number one customer.”
Sam: *laughs* “Oh really? what have been some of Laurie’s recent purchases?”
Molly: “An assortment of cushions, a washing machine friendly zip bag for cleaning your sneakers, a fingernail trimmer, a feather duster extender and a useless green massage gun. That’s just this week.”
Sam: “Molly, are you trying to turn this interview into some sort of marketplace to sell some of Laurie’s unwanted Temu purchases?”
Molly: “All items are free to a good home”
Sam; *laughs*
Sam: On a serious note, I want to sincerely thank you both so much for sharing such a personal story. This kind of insight will really help people better understand what MND can do not only to the person diagnosed, but to their family and friends.”
Sam: “And in closing — We lost one of the all time great Australians last week with the sad passing of Neale Daniher, what does his journey and his mission mean to you?”
Laurie: “I buy a Fight MND beanie every year and I really appreciate what Neale has done in taking on this beast.”
Molly: “I’ve read his books. He’s such an inspirational man. And I think we should all try to live by some of his values and do our best to play on.”
