Week 1

It’s the most frustrating condition I’ve ever known. I feel like screaming out at times — and I often do. It’s frustrating because I can’t seem to do anything these days the way I used to. You’re told to stay positive and keep moving, and while I try, I find that incredibly difficult at times, both physically and mentally.

 

My mobility is declining, and I’m constantly trying to do things that I simply can no longer do. I’ve always been incredibly strong and disciplined, so coming to terms with that loss is hard. Some days, I joke that it should be renamed motor stiff disease. Other days, there’s nothing funny about it at all.

 

I fall over a lot. It can take me a long time to get back to my feet, especially when I’m in the gym. I try to do a set of weights like I used to, but what once took me 30 minutes can now take two hours. My strength has decreased by around 80–90%. When I’m on my own, I pray that I don’t fall. I know I’ll likely need a PT to accompany me at some point, but for now, I soldier on.

 

Even walking in my own garden has become a challenge. I fall because of my drop foot or stiffness. I used to do six laps without thinking; now I have to check the weather first. I actually find it easier to go out when it’s raining — when it’s dry, I drag my feet more. I wish I could go outside regardless of the weather, but those days are largely gone. Still, I have to do it. If I don’t, I feel trapped.

 

I’ve often felt that this horrendous disease came from years of a regimented regime — the athlete’s curse, perhaps. But exercise remains vital for me in trying to slow further deterioration. I would love to turn back the clock. This is a brutal disease — one I wouldn’t wish on anyone. It’s widely recognised as one of the toughest conditions to live with, and I understand why.

 

Right now, I train around 13 sessions a week, plus an hour of stretching every day. I’m hopeful that I’ll find what works best for me. I don’t sleep well; I wake up five to ten times a night. I don’t believe western medicine currently has all the answers, but I remain hopeful that continued learning and self-exploration may help. I believe the keto diet is the right path for me — something introduced by neurologist Matthew Phillips, who I often engage with. It makes sense to me, particularly as I feel overtraining and metabolic dysfunction may have played a role in my diagnosis.

 

Despite everything, I often feel blessed to still be alive. I’ve lost much of my ability to talk, and I’m realistic about what may come next. But I’ve always been a fighter, and I intend to face what’s ahead with healthy resistance. I’m instinctively a natural person, and I’ll continue to fight this disease with passion, determination, and intensity. I’m grateful that I’m still here and able to do what I can, as best I can.

 

This mindset is exactly why Challenging MND exists. It was created to help people living with MND continue to live well — to keep moving forwards and to create lifelong memories, even as the disease takes so much away.

 

As I approach my next challenge, I feel a real sense of trepidation. I used to be incredibly proud of my fitness and strength, and that’s changing fast. I’ve lost up to 80–90% of my strength and now struggle in a gym where I once held my own. I used to clean around 125kg — I can’t do that anymore. But despite all of that, I’m still looking forward to what’s next.

 

I’m excited to link up with my friends Joel and Comp (Luke) for my next event. I’ll aim to do five minutes of rolling every hour for 24 hours straight, under the guidance of two Brazilian Jiu-Jitsu black belts. It’s a tough sport — you don’t reach that level without resilience and care. This event will mark my 19th challenge since my diagnosis.

 

Hopefully, I can do a few more.

 

This blog is simply a place to share the reality of living with MND — the frustration, the fear, the hope, and the determination. I’ll keep showing up, and I hope you’ll follow the journey.