This is my personal account of living with MS and what your support means to me.
I was first diagnosed with multiple sclerosis in 2000. The symptoms had begun in 1994 but I did not realise at the time I was having my first episode. It was no surprise to be finally told the weakness in my legs, trembles and nausea was MS.
It’s a strange thing indeed to be told you have MS, one minute you have a relatively normal life ahead of you, the next you’re facing enormous challenges and uncertainty.
Multiple sclerosis is such a mystery disease. You can’t just point at a wall chart and say this is where you’re at, and here’s where you’ll be in a year.
Every individual case is completely different and at no point can you be told just how your particular journey will map out.
That’s the thing about MS, you never know how it’s going to affect you, let alone the lives of those you care most about. The effects can’t be predicted or foreseen, you wake up each and every morning not knowing just how difficult the coming day might be.
But it hasn’t stopped me. My wife says I don’t just burn the candle at both ends, I take a flamethrower to it! In fact, this disease has made me hungry: I got my doctorate to teach Research Ethics & Integrity at Griffith Uni. I consult with researchers and scientists around the world on the ethics of surveys and clinical trials.
I’ve set up a web design and email company, and I’ve designed an online science fiction game in my spare time. I’m coping, but I am lucky to have the support of my beautiful wife and wonderful son. My family simply can’t provide the in-depth knowledge I need, for that I turn to MS Queensland.
It’s very easy to put a price on a wheelchair. You can also put a price on the cost of Internet access. You can even price a wooden ramp to help me wheel my way to the front door. But what I’ve really come to rely on from MS Queensland is something that’s difficult to put a price on – self-respect and being treated as a human being.
The information and support provided by MS Queensland is the difference between living with some dignity and self-respect, and not. To those people making the effort to fundraise for people like me in the Griffith Sport MS Swimathon – thank you. As someone who is on the receiving end, I can tell you it makes a huge difference to my life.
Fighting MS since 2000