I was diagnosed with Motor Neurone Disease on the 6th May 1999. I was 26 years old. I hadn't a clue what Motor Neurone Disease was, let alone what was in store for me.
The initial shock led to a rapid progression of the disease and within two years I was in a wheelchair and no longer able to drive my car. This was a major blow to me because I was a race-car fanatic. I had no fear behind the wheel. I was free as a bird and drove with a serious need for speed.
I was living in Australia when my symptoms first became apparent. The disease started in my right foot. I began tripping lot and one day, in April 1998, I fell getting off a train in Sydney. My leg never got better after that. I thought I had hurt my back from the fall so I saw a chiropractor. He told me that I had a lower, motor, neurological problem. I paid him $60 and left. I convinced myself he was a quack and what the hell would he know?
New Years Day, 1999: A few of my friends and I decided to go up to the North Shore for a picnic on the beach. I was going for a swim before I ate, so I walked down the beach and entered the sea. I was less than waist deep and a wave knocked me over. When I tried to get up I couldn't stand. I was frantically scrambling on my hands and knees on the sea floor. Next thing I knew I was pulled from the water. A crowd of people gathered around, just looking at me spluttering and coughing on the beach. I had almost drowned in 3 feet of water (how embarrassing). I was shaking and vomiting. I couldn't wait to get into the car and get home.
Following the incident on the beach I noticed I was having more and more difficulty on the stairs in the bar I was working in. My leg was getting worse. I was now staying in Australia illegally, so I had no Visa, no Medicare card, no money and an expired plane ticket - I was up shit creek without a paddle!
But the worst thing was that I didn't know or understand what was happening to me. I had always been very fit. I was excellent at water skiing. I could throw a car around better than most men. I had never been sick before.
Eventually I realised that I had to go home to Ireland. My sister travelled out to Australia in April of 1999 and we travelled home together. I was diagnosed with MND on 6th May 1999. I pity anybody who has to go through what I am going through.
I believe there will be a cure for MND one day. Scientific research is advancing and involves people like Professor Robert Brown in Massachusetts and our own Professor Orla Hardiman in Dublin (who recently won the Sheila Essay Award for ALS Research).
I also believe that your personality will determine how long you will survive with MND. If you have fire in your belly and you fight back, you can do well. I am a very stubborn person and I will never give in.
At times it is difficult to stay positive. You do have bad days, but so does everyone. I try to think of the disease as a temporary state and put it to the back of my mind. My advice is to do what ever floats your boat. Also, always follow your gut instinct. I was told to have a peg feeding tube eight years ago. I didn't want to have it, so I went against all medical advice and said "No". I was in Beaumont hospital in July 2007, after the sudden death of my father, and the doctor said to me "It's a miracle that you are still able to swallow food". I asked him "How long have I left to live?" He said "four to six months". I am still here!
Food, nutrition, vitamins and minerals play an important role in the control of this disease. Maintaining body weight is also vital. It's important to remember that just because you have MND you're not exempt from other conditions, for example, asthma. Sometimes you feel you're deteriorating and you may have caught the flu.
You have to be careful what you believe in too. There are a lot of people out there who are all too willing to take your money for a 'cure'. I've been 'had' a few times. I've bought 'magic potions' on the internet. I remember buying stuff - and to think I actually ate it - it claimed to be the oral equivalent to stem cells… …needless to say it didn't work. On reflection, desperation is an awful thing.
The Irish Motor Neurone Disease Association supports me by providing my specialised equipment, technology, software and communication aids. The association then co-ordinates assessments so I can continue to adjust my equipment and technology to suit my needs. The group also provides financial aid to help with the cost of my home carer and they provide a Nurse Specialist, Fidelma, who calls to see me.
I owe my life to my mother who gave up hers to take care of me. I have a wonderful niece, Katie. She is two years old and keeps me going through the bad, sad times. I am very fortunate to have had an excellent carer for the past four years.
At the end of the day, when push comes to shove, you realise that the people who are there for you today and tomorrow are the family and friends who were there from the start, from day one.
By Amanda McCormack