My recovery is a long game

By Rob Mazzone

I was born in Melbourne, but now live in France, which is where I had my stroke. I read so many of your stories from Oz, and I wanted to reach out, say hi, and share mine too.

My stroke happened on Christmas morning in 2017 while I was at the gym. While most people were still in bed enjoying a sleep-in, I snuck out for a quick training session before our family luncheon at my sister-in-law’s. I was doing some light overhead presses when I stroked out. If it weren’t for the few attentive people at the gym that morning, things could have played out very differently.

The stroke was caused by a micro shunt that let go while I was working out. It completely wiped out my left side, took away my balance, and left me needing to relearn everything; walking, using my arm and hand, and the simplest of tasks.

I spent almost a week in intensive care, followed by nearly four weeks in a high-dependency neurological ward. After that, I underwent more than three months of intensive rehab at a specialised PRM unit in Saint-Étienne before returning to Paris to be with my partner and daughter. Once back, I continued another eight months of intensive rehab at a day hospital.

Fast forward seven years, and I recently got back on a motorbike, riding independently for two hours on both Saturday and Sunday. It was a huge milestone and made all the hard work feel worth it. I returned to work part-time two years after the stroke in an adapted role that allows me to go into the office twice a week which keeps things ticking over upstairs. It was also a huge moment and milestone. Maybe full-time work is in my future, never say never!

I still deal with neuropathic pain and discomfort, spasticity in my arm, leg, foot, and hand, burning sensations, pins and needles, and the ongoing challenge of managing fatigue. My proprioception and fine motor skills aren’t great in my affected limbs and extremities, but I keep pushing forward. After taking more than a year off from my intensive functional training, sport and therapy approach (which I was dedicating 3 to 4 hours minimum per day, at least 3 to 4 days per week throughout the course), I’ve returned to physio twice a week, with sessions lasting two to three hours and picked up regular therapy sessions again. I walk anywhere from 50 to 70 km a week and have just started to work in the odd short jog and strength training session.

There have been plenty of setbacks along the way, but also many wins and incredible support. Navigating the medical system with my limited French – hospitalisation, rehab, social security, medical reviews to return to driving and riding was also a big part of the journey. And it’s not over yet. I still see and feel the little improvements here and there and feel blessed when it happens. I continue pushing for progress.

Of course, I didn’t do it alone. My partner, my daughter, my amazing family back in Australia, they’ve all been there for me through this.

I just want to say thank you to everyone at the Stroke Foundation for the incredible work you do to improve recovery and quality of life, and to everyone who shares your experiences – it helps even those of us watching from afar. I wish you all the best!

Here are some of my recovery insights – I hope that they help someone:

Taking care of all parts of you is important, particularly having therapy support from a psychologist in the mix. Even though it doesn’t feel like it at the start, the power of healing and strength also comes from within.

The human connection with medicos, paramedics, carers, and my post-rehab care team was critical for me and wasn’t something that I could orchestrate. Sometimes I changed people in the team when I could if it wasn't working out. In each case, it was never spur of the moment and I would talk it over with my family and it was after months or even a year or two. Sometimes you need to give it time.

I wish I had taken on board and understood from the start that recovery is a long game. If there is one thing I could change, it would be to focus on the long-term rather than getting caught up in trying to achieve big wins quickly and trying to get everything back as soon as possible. More work doesn’t always result in getting there quicker or better. Even though the ‘work harder, work longer’ made me feel better and often was how I coped. And while it’s tough, staying in hospital rehab as long as possible is crucial. I saw too many people opting out too early, wanting to get back home to their loved ones, which is understandable. In hospital, you have access to all the rehab specialists in a protected and adapted environment. The stronger and further advanced you are when you leave hospital, the easier the transition is for you as well as those near and dear.

Finally, I have found sharing my story very therapeutic. To take the time to stop and reflect – to remember all the people that walked with me for part or some of the journey, as well as those still at my side. It was really nice, thank you.