I’m 42 and live in Mackay, in Queensland. I’ve got MND.

I used to work as a sub-contractor for a building company installing fascias and gutters. One day in October 2006 I found I had to use two hands to use my tin snips. At the time I just thought the cutters were blunt.

But then I was standing on a ladder and realised my legs weren’t supporting my weight properly and I fell over. The small muscles in my biceps were twitching and my right index finger was curved. But there was no pain.

 My local GP was concerned and made an appointment for me to see a professor in Brisbane.

 The professor did a series of tests on reflexes, things like hammer tapping. Then he put a probe in the palm of my hand near the thumb. Another test was a curved device on my elbow to send an electric shock through my forearms, and another one on my knee to check the reflexes through the legs.

 All this took about an hour and at the end of that his on-the-spot diagnoses was MND.

 They put me on Riluzone, which is supposed to slow down the effects, but it’s minimal for me.

 I asked the professor what effect would MND have on my life. “Dramatic”, he said.  It was horrible.

 I went back to Mackay, and was desperate for information. I got onto Yahoo and found a support group called Ozpals (www.hotkey.com.au). What was fantastic about them was the minute I contacted them the messages started to come in.

 A member there put me onto Steve Shackel’s website. Anyone recently diagnosed with motor neurone should go to his website http://home.goulburn.net.au/~shack/. He’s got a wealth of information.

 I do loads of research – that’s the only way I’ve found out anything, what I should be taking, what I should be eating.

 I eat really well, lots of salads and greens. I do eat some meat, but not a lot. Greens are good for neurological diseases.

 I also take quite a few supplements on the theory that a little of everything is better than a large dose of some things. At the moment I’m taking Rilutek, omega 3 fish oil,  N-Acetyl-l-Cysteine (NAC), Alpha Lipoic Acid (R-ALA), Acetyl-l-Caritine (ALC), CoQ10, Vitamin E,  Ester-C, and Grape Seed Extract (95% proanthocyanidis).

 I’ve also found massage to be helpful, though not always. And I started acupuncture twice weekly.

 A Brisbane naturopath put me onto liquorice root and Leucostat to help treat the MND.

 At the moment I’m also trying some products that contain zeolites [volcanic minerals] that extract heavy metals from the body.

 I’ve gone down a bit, but this coincided with breaking my wrist.. My advice is to take care.

 My GP’s great, but it’s hard to find information up here. There’s so little that’s known.. There needs to be so much more research done.

 I do have antidepressants, but I rarely take them. And I’ve got Tremaze, which, while it doesn’t help me to go to sleep, seems to keep me asleep all night, because otherwise I wake frequently. Again, I don’t take it much.

 There’s another group on the net that I find useful, Patientslikeme (www.patientslikeme.com).  This one and Ozpals have given me all the support I need.

 My family’s been through a lot. I was divorced. My mum’s still alive, she’s 74 and lives in Bowen, but she’s really been through a lot. My sister died of cancer only recently. Now there’s me. My brother died 12 years ago of a brain tumour.

 Because I’ve got this I’ve tried to look at what might have caused it. I worked on farms when I was about 17 for a few years, and was exposed to pesticides.

 And I spent 17 years at the abattoirs, in the boning room. It was so cold in there, I used to get a runny nose all the time. I used a nasal spray to dry up my nose. On the box it said not to use it for more than 5 days, but I used it every day. I had to. I wonder if over-using it might have caused this.

 I just don’t know. I wonder what circumstances I’ve been in that brought this on.

 The other day I went to my physio, a really good bloke. He said to me “the physio you need is going to cost you a fortune. You should go to Mackay Base Hospital and register there and you’ll get occupational therapy, speech and physio help.” I’m going to do that.

 I’ve considered going to China for traditional Chinese medicine treatment. They said they can help me but any benefits I get I think would be offset from the stress of being away from my family for up to 12 months.

 Today I’ve added Creatine Monohydrate to my regime. I’ll monitor my progress over the next two months for any sign of improvement.

 One of the odd things about MND is the cramps, excessive cramps I’ve had since the onset of MND. Violent cramps are few and far between, though.

Also the emotional aspect. I tend to laugh excessively at things and jokes that aren't that funny. It’s weird because I'm thinking it wasn't that funny but I can’t help laughing anyway.

Also, I tend to cry after friends or family leave. A recent example was when my ex-wife did something as simple as taking me to the doctors. When she said, and this applies to just about anyone, “Is there anything I can do?” the tears well up almost immediately. I hate it but can’t help it. This is especially true when the kids [twins, Jai and Erin, aged 9] tell me “I love you, Dad, and you’re the best dad in the world”. Tears are running down my face just typing this but I can’t help it. Weird, huh?.

 I want to do something. I’m just sitting here. That’s why I investigate all avenues of medical and naturopathic medicine.

 - April 30 2007

Update: March 2008 : It's been 15 months now since my diagnosis of Motor Neurone Disease. In this time my MND has been sporadic. I've gone from a month or two with no change and then suddenly I find myself not being able to do things I did a week ago. I've gone from 85 kilos down to 64, even though I've eaten a well-balanced diet of meat, vegies and fruit.

In December I lost my balance and fell over backwards hitting my head quite hard on the kitchen floor. I suffered severe headaches, dizziness and strangely enough I lost my sense of taste. My condition deteriorated quite rapidly after this fall.

I am no longer able to feed myself, hold drinks, get out of bed, bathe and toilet unassisted. I use a walker around the house though I am slow and unstable. I use a wheelchair when leaving the house.

Coming to terms with needing help with personal hygiene has been traumatic for me.

I miss going to work, flying my aircraft and just being able to take the kids to the park. I spend a lot of time on the internet looking for alternate cures and treatments. I beleive that just because science doesn't know of a cure, doesn't mean there isn't one.

I am a member of the Ozpals MND support group. The group has been helpful with answering questions that the doctor can't. I know their members are scouring the net looking for answers and sharing their findings with the rest of the group. Which gives me a sense that I am not alone in trying to find a cure for this mongrel disease.

I am not taking any supplements now but am still taking Rilutek. I have in the last 2 weeks started taking lithium which has been found in an Italian study to have neuro-protective properties.

My Mum has now moved in to look after me. My nephew, Steve has been with me since the onset of MND. They and my two children are wonderful. I am taking one day at a time. I am blessed to have the love and support of my family and friends.