I can almost see people do a double take when I tell them I have MND. I’m in my 30s. People living with MND are usually a fair bit older than me. Even my neurologist said it’s rare to be so young. But here I am. This is my life now.
My first symptom was in my right wrist, I'd been off on adoption leave for eight or nine months, so hadn't really used a desk computer for a while. When I got back to work, my wrist kept hurting. It wouldn't hurt every day, so I didn't really think about it. I thought maybe I’d compressed a nerve somehow. Around the same time, I started noticing some weakness in my leg. I'd had sciatica for years so I just put it down to that.
But deep down, I was worried. Something wasn’t right. I went to the doctor and she said neurologically I was fine, but she wanted a physio to take a look. This was all during COVID, so I waited months and months for an appointment.
When the appointment finally came, the physio noticed the muscle wastage in my wrist and saw my fingers. They did a few basic physical tests.
Then they told me I have MND. He just told me as if he was telling me the time of day.
I almost had a breakdown.
I’d had a suspicion, of course. But it was such a shock to hear it like that.
In that situation the only thing you can cling onto is hope. But once I finally had all the tests to rule every other condition out, there was no doubt. I have MND.
I just take it a day at a time now, I don’t pre-plan things, I live for the moment – that’s the only thing I can do. I don't know if I'm going to be here next year, none of us do. I just want positives to come from something so negative.
So I’m doing what I can to fundraise. And I hope sharing my story with you helps with that too. Because by funding research, one day people won’t have to lose their lives to MND like I will.
If you’re reading this and it’s making you want to donate, please don’t let me stop you! Now would be a wonderful time to do that.
I want my son to know that fighting MND for others was my legacy. I could sit here and sit still, but I’m going to go down fighting. If by doing that I raise a shedload of money, then that’s even better.
I hope you’ll help me tick that one goal off my bucket list, by donating today.
Thanks,
Sam
