By Annette Campbell
Until one day in June 1997, Amanda Jones’ life was “pretty normal”. The then 26-year-old was living in Sydney, working full-time in a bank and engaged to be married.
But then the degenerative disease multiple sclerosis (MS) stepped in.
“My right arm stopped working — it became really heavy,” she recalls vividly. “I lost fine motor skills like writing, putting on make-up and I kept dropping things. Also, I was extremely tired.”
So Amanda went to see a doctor and was referred to a neurologist. After a few weeks of tests, the diagnosis of MS was confirmed.
“I thought it was the end of my life — that I’ll just be at home, never do anything again and just deteriorate,” she says. “I had a cousin who’d had it and been in a wheelchair since his 20s. So I thought ‘that’s it … that’s what happens’.”
But the reality for Amanda, now 34, has been quite different. She enjoyed “quite good” health for quite a while, although now she uses a walking frame, walking stick or wheelchair depending on the level of her mobility.
“I have good days and bad days,” she explains. “My balance is fairly shaky today, but tomorrow I could walk well. The fatigue is a big part. And being ‘MS tired’ is a whole lot more!
“My arms are fine, but my left leg is worst. I have to self-catheterise, because the bladder is a muscle and MS can affect that as well.”
Amanda and her fiancé did go on to get married, although the couple separated in August 2003.
As a proud MS Ambassador, Amanda is energetically doing all she can to promote this year’s MS Awareness Week. “I’ve often thought I’d like to raise millions of dollars and find a cure … but I also want to raise awareness,” she smiles. “It’s not a death sentence or contagious … and I might be a bit slow or need to sit more often than most people, but I’m still normal.”
What is multiple sclerosis?
MS is the most common disease of the central nervous system among Australians aged 20 to 50. It causes the protective sheath around the nerve fibres to become damaged, interrupting messages to the brain and interfering with the brain’s ability to control functions such as sight, balance and speech.
Did you know that …
Less than 20 percent of people with multiple sclerosis use a wheelchair?
The average age of diagnosis is 32?
Three times as many women as men have MS?
This year, MS Awareness Week is May 29 to June 4. For more info and to make a donation, phone: 1800 CURE MS (1800 287 367) or visit www.msnsw.org.au
Picture posed by model
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