THERE are hard days, good days, amazing days and terrible days but Andrew Marshall says each new day he gets to experience is a gift. Andrew’s life has been marred by a rare and incurable neuromuscular disease known as Friedreich’s ataxia.
Trapped in a body that just doesn’t work, sufferers have difficulty walking, a loss of sensation in the arms and legs, and impaired speech. Most people with Friedreich’s ataxia die in early adulthood if there is significant heart damage, the most common cause of death. Sadly, as with many degenerative diseases of the nervous system, there is currently no effective treatment for Friedreich ataxia. While Andrew was diagnosed with the disease when he was 16 years old, his mom Carol explains that she first noticed something was wrong when he was in Grade One.
“He had difficulty with fine co-ordination and writing. We took him to a professor who said we needed to work on his co-ordination. She gave us lots of exercises, which he hated. As time went on, he became very clumsy and his spine started twisting. He was taken to a muscle specialist, as well as an orthopod. He so wanted to play sport but kept missing the ball. Later he was taken to several neuros and we were given all sorts of different opinions.
As a teen he was walking like a drunk and fell a lot. It was so bad he was even thrown out of shopping centres. I had to deal with so many rude mothers coming up to me saying my son was drunk or on drugs. When he started high school, things got even worse. He hated school as he was different and I suspect bullied a lot.” Carol says eventually a colleague of hers (she was a nursing sister) said he would make an appointment with a neurologist who would definitely be able to help.
After many more tests, Andrew was eventually given the diagnosis of Freidericks mother and father have to have the exact same fault with the FXN gene on chromazone 9. All muscles degenerate, the biggest being the heart. Andrew says the diagnosis was very hard to accept. “I went through all the stages of denial and plenty of anger. I started smoking dagga and dabbled with other drugs. I was not in a good place. After some tough love I came right. It was a relief to finally have a diagnosis and be able to say, ‘I’m not drunk, I have a muscular disease.’
My friends have been wonderful. I’m an adrenalin junkie by heart but obviously can’t do so many things because of this disability. My friends have strapped me into canoes and taken me white river rafting, carried me up mountains to zip line and strapped me to a buddy to skydive. I’ve travelled overseas several times and even swum with dolphins. I have not sat back like an invalid but have been up to try everything, even though I am now severely incapacitated.”
A few years ago, Andrew started writing a manuscript, mostly typing a lot of it on his cell phone. He never thought it would one day become a book. “I needed to get the mess inside my head into some kind of story I could understand and share with people. Dissecting Wobbles is me talking to myself, and others, at the same time. It’s me remembering other times, when I ran and jumped and landed on my face.
It goes from my early childhood through the diagnosis and my weird and rebellious teens, and then into adulthood and a real decline. The story follows a similar course to most young lives, only for me, at the centre of school, growing up and girls, was the disease, which morphed from a limp to a crutch to a wheelchair to right here and now.”
Pay It Forward
AS he gets older and weaker Andrew says he spends time talking about what he hasn’t done. He never studied and never became a motivational speaker, which he has always wanted to be. His book, he says, is one of the few things he has done that he is solidly proud of. To assist Andrew in raising awareness about Friedreich ataxia, his book can be found in Exclusive Books and many other stores countrywide. For more information on Andrew, log onto his website at www.dissectingwobbles.co.za. ataxia.