I'm not accepting MND | Pat's story

A few years ago, after seeing different doctors and specialists, having operations, MRIs, lots and lots of tests, and lots and lots of time, my neurologist came in and we had a conversation that went like this:

“I’ve got bad news, you’ve got MND.”  

“Oh, okay.”

“I’d like to talk to you about it and tell you about what’s going on.”

“No, that’s alright.”

By not accepting it I mean I’m not going to see everything that happens to me as being part of this disease. Like if I have a gruff voice, it could be for whatever reason, and I’m not going to make it into a negative thought like ‘oh no, now my voice is going.’

It also means that I’m not going to limit myself or stop testing to see what I can do. When I got my diagnosis, the neurologist told me not to go and over-exercise, I said okay, and then when I went home I did a 4km walk.

I’m still getting my steps in. It’s no longer a 4km walk, now it’s maybe 3000 steps over a nice flat football field every other day, but if I can do it I’m going to keep doing it. And if I can’t do exactly that, I’ll find another way to do it. That might mean that I go on more walks with other people, so I can hold onto them and their wrists, which helps me to keep walking more.

The worst part about my MND is the spasticity. It makes me unsteady. I can’t have a dog get under my feet, or children near my legs, because if anything touches my left leg I can spasm and fall over. It’s a horrible thing. But I won’t let that stop me from doing things.

I can’t look up and enjoy the scenery when I’m walking on my own, but I can still enjoy the walk. I can still find a place to stop and there I can look up. And I can feel good about having a good walk, for getting those steps in.

Or with golf. There’s little changes, like I’m in the golf cart, or I can nearly fall over when I hit the ball, but simply playing gives me something rewarding. The guys I play with, I’ve been playing with for years, and sometimes they’ll have to move the ball for me because I can’t play if my left leg is down and my right leg is up. But they can do that, they’re really good with me, and if anything comes up with them we’re all really good about it too.

At this age, everyone’s making some little adjustments or we all have different things going on with our body. So it’s all about continuing to do things, and adjusting so that you can keep doing the things you enjoy.

Right now, there’s a lot of ramps around the place, thanks to MND Victoria, because that makes it easier. And with walking, holding onto someone’s wrist makes it easier, so I do that.

Every time I do something and it’s easier, or it’s harder, I think about what I did to make it that way. And when I notice that doing one thing makes something easier or better, then I can focus on how I’ve improved. For example, I’ve recently been prescribed marijuana oil, which I’m noticing has a calming effect on my nervous system, so I can handle situations that crop up in my life a bit better. So even if I’m getting worse with MND, in other ways I’m getting better.

I know that everyone’s progression is different, and we can all do different things or need different adjustments. But I do think for all of us, we can find something to look forward to every day. Sitting at home and dwelling on our disease isn’t good for our brains, our lives, or for our loved ones.

It doesn’t matter what it is. If it’s walking out to get the newspaper and back, or having breakfast. Maybe it’s having people over around the fire, listening to some music, seeing Hawthorn win, or sharing some advice over a nice coffee. Everything’s about getting out, giving and getting good vibes from others.

Getting this out, that’s a positive. I have a good social life, but it can be a lonely world with this disease, and it’s nice to have extra people there who understand you.