Stroke Has Kicked Me in the Guts - But I’m Not Defeated

By John 

I retired differently to the way I thought I was going to retire. 

I’d been retired for about 10 months when I had my stroke. I had plans. I was getting things done around the house, painting, keeping busy and finally having the time to do the things I wanted to do. 

Then, in September 2021, everything changed. 

I had an ischaemic stroke in the right parietal region of my brain. It came completely out of the blue. One minute I was getting on with my life, and the next I was dealing with something I knew very little about. 

When I came home from hospital, I spent about a month in bed. My whole left side was affected – my face, arm, hand, and leg. I had very little strength or sensation, and the fatigue was shocking. 

Stroke had kicked me in the guts, but I had a choice to make. I could dig myself a big hole, climb into it and retire into a dark place, or I could get out into the light and find another way. 

I chose the light. 

One small step at a time 

One of the things that has helped me most in my recovery is a Japanese philosophy called Kaizen. 

Kaizen is about making small, continuous improvements. One small step towards something better, I think that idea is perfect for stroke recovery. 

You can't necessarily look at where you want to be five years from now and work out how you're going to get there. Sometimes you just have to look at what you can do today. 

So that's what I did. 

I set myself small, achievable goals and didn’t expect everything to come back at once. I focused on one thing, then the next. I kept practising, repeating and moving forward. 

For me, recovery has been about understanding that improvement doesn't always happen in huge leaps. Sometimes it's so small that you don't even notice it at first, but those small improvements add up. 

Five years on, I'm still doing things to challenge myself. 

I don't think rehabilitation ever really ends. Not for me, anyway. I think it's a permanent state of rehabilitation because stroke doesn't just affect your body, it affects your thinking, your confidence, your independence, and the way you see yourself. 

Rehabilitation isn't just about your body 

For a long time, I didn't know where my left foot was. 

I could be walking along and not really know where my foot was in relation to the ground. That made me very cautious. I walked slowly and carefully because I was constantly thinking about what my body was doing. 

That's one of the reasons I decided to get involved in research; I wanted to get better. 

I liked the old John, and I wanted to find my way back to him. 

I became involved in research through NeuRA at UNSW, including a trial looking at balance, movement, and cognition. As part of the trial, I completed different assessments and wore a device that tracked my movement. 

I also used an exercise device at home that turns rehabilitation into something a bit like playing a video game with your feet. Imagine playing Pac-Man, but instead of using your hands, you're using your feet. 

It sounds simple, but it makes you think. 

I have to think about where my left foot is going, where my right foot is going, and where I need to move next. I'm constantly making that connection between my brain and my body, and for me, that has been incredibly valuable. 

I've noticed that I'm more cognitively aware of where my feet are and what I'm doing. I've also noticed changes in my confidence, and I think those things are connected. 

You can't separate the physical side of recovery from the mental side; they're part of the same person. 

I had to accept that my life had changed 

Acceptance is another important part of my recovery, and when I say acceptance, I don't mean that you have to like what has happened. 

I certainly don't like everything about having had a stroke.  

My life has changed. There are things I used to be able to do that I can't do in the same way anymore. I used to play music, for example, and that's something I've lost. 

My memory isn't what it used to be either. Sometimes it feels like I've lost 10,000 pages of information out of my brain. 

That's frustrating but accepting that my life has changed doesn't mean I've given up. It means I've stopped trying to pretend that everything is exactly as it was before. 

I'm 73 years old. I'm not going to feel like I did when I was 23, and I know that. But I can still make the best of what I've got. 

That's what acceptance means to me. 

You have to train your brain 

One of the things I've come to understand through my recovery is the importance of neuroplasticity – the brain's ability to adapt and change. 

After a brain injury, there are no spare parts. You can't just replace your brain like you can replace a broken leg. So, I've had to find ways to retrain it. 

For me, that has meant repetition, practice, joining research projects, and challenging myself to keep moving forward. 

I've also learned that motivation matters. Nobody can do the work of recovery for you. People can support you; they can encourage you, and they can listen to you, but you have to take the steps yourself. 

Sometimes those steps are physical. Sometimes they're mental. Sometimes they're simply getting out of bed and deciding that today you're going to try again. 

Joining a research project has given me hope 

Taking part in research has also changed the way I think about my recovery. 

When I first went into the trial, I didn't necessarily know what to expect. I had cognitive testing, movement assessments, and all sorts of measurements taken. But I liked being part of something that could potentially help me - and possibly help someone else in the future. 

Research gives us the opportunity to learn more about what happens after stroke and what might help people recover. For me, it has also given me confidence. 

I've seen changes in myself that I didn't expect. My fatigue has improved enormously. I used to feel like I could sleep for 15 or 16 hours a day, now I can go to bed at night and have a normal seven or eight hours' sleep, which is amazing. 

I feel more confident in my movements, and I think more about what my body is doing. I also feel like I've rebuilt some of the confidence I lost. 

That matters just as much as the physical improvements. 

Find your own version of Kaizen 

Everybody's stroke is different. What works for me might not work for someone else, and I wouldn't tell another stroke survivor that there is one particular way they should recover. 

But I do believe in small steps. Don't worry about the whole journey, work out what your next step is. 

Then take it. 

If you have limited movement, perhaps your first step is working towards getting up. If you're struggling with fatigue, perhaps your goal is getting through one activity today. If you're struggling with your confidence, perhaps your first step is going somewhere you've been avoiding. 

Set small, achievable goals and do it.  Then set another one, and another one and keep going. 

That's Kaizen - one small step towards continuous improvement. 

I'm still here 

Stroke has changed my life, there's no point pretending otherwise. But I'm not defeated. 

I'm still here. 

I'm still learning. I'm still challenging myself. I'm still doing my rehabilitation. I'm still looking for ways to improve, and every day is a new day. 

I recently parked my car at the local football ground and went for a walk. For someone else, that might not seem like a big deal. For me, it was another step, and that's the thing about recovery. 

Sometimes you don't realise how far you've come until you stop and look back. 

I'm proud of how far I've come, but this isn't the end of my story. It's ongoing, and tomorrow I'll take another step... 

If this story resonates with you and you have question, please call the team on StrokeLine 1800 787 653