Every single day Leitchville’s David Jones, or Sox as he likes to be known, battles his body.
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It is only through sheer determination and a refusal to give in that he can still walk despite myofibrillar myopathy ravaging his body.
“In the beginning I had no idea the lower part of my legs were simply dying,” Sox said.
MFM is a neuromuscular disease characterised by slow and progressive muscle weakness, and in Sox’s case it started in his feet and is working its way up his body.
In hindsight Sox said he started showing symptoms around eight years ago but it wasn’t until he got bitten by a spider back in 2017 that he realised something was seriously wrong.
“My toes had started to curl up and I was having a lot of problems with my feet, which I thought were related to some old injuries I had encountered years ago, and then I got bitten by a spider and everything changed — it was like I had a stroke,” Sox said.
As an interstate truck driver, Sox travelled the country and it was nothing for him to notch up 200,000km a year. It was while he was in Adelaide that he was bitten by a spider.
“I didn’t think too much about it at the time but when I was driving home I noticed a blister on my arm, I gave it a squeeze and the core shot out and I thought that was it. That night I had a headache and went to bed early because I had to have the truck in Sydney. The next day I woke up and was cleaning my teeth and getting ready to go when I noticed I couldn’t speak or spit the water in my mouth out,” he said.
Sox was taken to the Echuca emergency department where he was diagnosed with a stroke even though doctors couldn’t find a blockage.
“I tried to say I had been bitten by a spider but the doctors continued to tell me I had a stroke and they sent me down to Melbourne and that was beginning of the nightmare,” Sox said.
Over the intervening years Sox has endured many treatments on the path to getting diagnosed, including three painful nerve inductions and a biopsy.
“At one stage I was told my nervous system wasn’t working properly and I had a three-month treatment with high-dose steroids that basically wiped out my immune system and ended up nearly killing me,” he said.
Sox was given a cocktail of prescription drugs including steroids, Endone, Lyrica and Panadeine Forte, which essentially turned him into a bed-ridden zombie with severe stomach and digestive issues.
“I was sliced, diced, poked and prodded and in the end all I needed was a simple test, which was an ultrasound under my arm, to be diagnosed with MFM — and that didn’t happen until 2020.”
Traditional medical treatment has not been kind to Sox, which is why he has turned his back on western medicine and instead embraced the use of tetrahydrocannabinol (THC), physio and massage.
He claims it is the only reason he is still walking today.
“My physio/chiro is amazed by the strength in my body and how it has adapted. If I had have remained on all those prescription drugs, I would be bed-ridden or perhaps not even here at all,” he said.
THC remains a controversial treatment and Sox points out there are different types that benefit different things.
Personally, Sox has found the five-leaf plant to be successful because it helps relieve the muscular and nervous system.
“The seven and nine-leaf plants affected my mind and were no good for me but the five-leaf plant has given me relief I never experienced with the cocktail of drugs I was on before,” he said.
Sox only received a prescription for THC in 2020 and he had to fight hard for that.
He is angered by the fact he was legally allowed to drive a truck on a cocktail of prescription drugs but the minute he was given a prescription for THC his licence was revoked.
While he can physically no longer drive trucks he has lost precious years when he could still have done his job.
MFM might be slowly robbing Sox of his life but he is determined to spend every day doing what he can.
His children Mason and Eva along with his brother Steve are supporting him every step of the way.
He has established a workshop called the ‘Shed O Light’ in Leitchville, which has allowed him to get creative with his hands.
Music is also a major passion.
“I was unable to stand in front of a microphone so I built a 360-degree pivoting stool, which allows me to remain upright, and I also modified my guitar strap to take the pressure off my body so I can still play,” Sox said.
“Music gives me life and there is nothing like the joy of performing in front of people. The energy is free and it is just amazing and allows me to express what I am.”
Despite the obstacles in front of him, Sox attacks every day as best as he can.
“I have to stop the negative energy in my mind and focus on all the good things I have in my life including my kids, my music and the shed,” he said.
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