Stories & Achievements: Neil’s Story

Neil’s story: “Happy not dead day”

I‘ve started calling my stroke anniversary “Happy not dead day” and I try and push myself to do something challenging each time. My ninth anniversary is coming up again in October and I’m going to ride the Fernleigh twice in one day - 60 k’s.  I want to do it simply because I can. 

I just love getting out and about riding.  I was a cyclist pre-stoke.  I used to ride 30km’s every day to and from work rain, hail or shine.   The recumbent bike means I can still keep on riding and the support workers help me along the way.  The guys are terrific, all of them. Having their support gives me some great independence. 

I’ve made some great friendships with the workers. It’s just all a plus with Headstart, a great organization. I often ring Kellie up at the office and talk to her about what I want to do and what I want to change and, yeah, it’s no problem at all.

Apart from the riding I’m working on strengthening my left arm, trying to get some muscle working again. After my stroke I had no ownership whatsoever.  Very reduced sensation down my whole left side, leg included.  With the work it is improving slowly.

Two hours on a Monday I do physio or hydro. Five hours on a Tuesday I go riding. Two hours on a Wednesday we do whatever I choose, and five hours on a Friday I go riding again. I also do a lot of walking, around 12 k’s a week.

You can do more in the day if you don’t sleep too much!  Thankfully for me fatigue isn’t too much of a problem, although I am wasted by the end of a typical week.  I keep busy doing jobs around the house: pressure cleaning the concrete, mowing the lawn, pruning the garden washing the cars and so on - with one hand.  I’ve also got a big shed that my kids call “mini Bunnings warehouse” where I stay occupied with all sorts of machinery, my mock trains, LP’s, TV and so on.

My main struggle is mobility and also some mental, cognitive stuff, like board games. I’ve finally got my head around, pardon the pun.  When it comes to concentration I do get fatigued easier than I do physically.  I can only read a few pages of a magazine at a time, then I come back the next day and read a few more.  It’s testing me. 

Mobility-wise I also wear an AFO (artificial foot orthosis) which stops my foot turning and rolling. Over the years I’ve done quite a bit of volunteering with HMRI for stoke research.  It gives me a good feeling to help other people and get the news out there about stroke.  The students get a lot out of it.  I did a lot of videos there in the early COVID days for uni students to watch while doing all their online learning. 

I actually bumped into one of the students a month ago, and she said, “I know you“, I said I don’t know you, then it clicked that she’d seen me on one of the videos at the Uni. But we‘d never met.

My kids have also been terrific as far as I’m concerned. They’re all willing to give you a hand if you need it. They’re not too wrapped up in their own existence which is good. 

I’ll just keep on working hard and giving 110% every day.  If not more!

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