This guest blog post is particularly special to me. It is written by KJ, whom I met at a local cafe. We were sitting next to each other outside and struck up a conversation, which quickly turned to the topic of bikes. We had a wonderful chat and she told me the amazing story below. I immediately invited her to write a guest post about it, and true to her word, here it is! I love that this story emerged out of two strangers striking up a conversation and that bicycles brought us together. I also think this is a very important story to reflect on and share. Thanks so much to KJ and Ian for telling us their experience – and it goes without saying…if you ride in Brisbane and see Ian out and about – be sure to say hi!! Enjoy! NG.
Riding through the Storm
Image: Ian’s amazing bespoke bikes
Chances are if you frequent north Brisbane bikeways, you’ve encountered Ian. You may not have overtaken him though; arms pumping and metal shining, he keeps quite a pace on his recumbent hand cycle. Ian has hereditary spastic paraplegia (HSP), a rare disease causing progressive muscle weakness, but that hasn’t stopped him from pursuing the sport he loves with determination and creativity.
Ian fixed up his first scrapheap bike at age 15, in order to be able to “scream around the bush”. With his experience of in-shed tinkering with a neighbour, he found mechanical skills came easily, and these skills were put to use in his work as a panel beater, bus driver and Telstra exchange technician. A car license made him forget his first love until his mid-thirties when the purchase of a $120 bike offered the freedom of a daily ride before work. Before long he was upgrading, tinkering in the shed again, and sharing his joy of riding and repairing with his two children.
However, the signs that he had inherited his mother’s muscular disorder were there from as early as age 10 when he started to develop problems with his feet and knees turning inwards, and his feet dragging. His disease defied diagnosis until he was 52 when genetic testing confirmed he had the rare mutation of HSP. By this stage, Ian had been made redundant and, no longer able to climb ladders and with difficulty walking and the prospect of worsening mobility, he went on the disability pension.
Ian realised it was time for a cycling change when he tried to put his foot down to dismount and crashed. A familiar feeling for many, but this wasn’t the usual inability to clip out; his foot had just remained on the pedal. He bought a recumbent bike from Flying Furniture, and with clip-on shoes keeping his feet on the pedals at the right time, he was able to get enough momentum, despite fellow cyclists’ disparaging shouts of “Get off your bum you lazy…”
With time and progressive weakness, Ian needed to add an electric motor for pedal assist, but ultimately ran into problems with his knees falling inwards. His cycling future seemed over, with hand cycles at $10,000 priced out of his reach. He simply set to building one, and after a year and $300 was back on the bikeway.
Two hand cycles later, Ian relishes the freedom longer rides of 40 km to Woody Point or Sandgate offer, although he’s happy for a lift home from his wife Narelle. He suffers from the endorphin deficiency all cyclists experience when unsuitable weather or injury keep them off the bike – maybe a bit more than most because day to day there is a need for something to lift the spirits. Because of his fluidity and speed on the bike, fellow cyclists may be taken by surprise when he struggles to get into the end of ride coffee shop.
One thing is for sure, this is one cyclist who will not let disability hold him down.
Further information can be found at the HSP Research Foundation – created in 2005 to find a cure for Hereditary Spastic Paraplegia – an inherited, degenerative disease affecting mainly the legs, causing muscle weakness, spasticity and severely impairing walking.
The HSP Research Foundation is an incorporated, registered Australian charity that facilitates and funds research to find a cure. The Foundation is also the community hub for HSPers in Australia, creating awareness and providing support and education.