Jane writes about her son Matt:
Matt is a strapping 24 year old, 6 foot man with a zest for life. Matt is very sporty and has always liked to keep himself fit. He is a natural sportsman and has played football and cricket at a competitive level. He is a keen tennis player and skier and enjoys working out. One of the many sporting activities Matt enjoys is mountain biking. He rode his first bike at the age of 2 years old - real pedals and everything!
Matt is generally a very happy person and embraces a challenge. He is always smiling, even in the face of adversity.
Matt developed focal epilepsy when he was 12. It took several years and many investigations before we understood the type of seizures he was having and the impact they would have on his life. He suffers seizures at least weekly and these can cluster over a couple of days.
This is quite exhausting for him and it can take several days to become fully energised again. He has no warning (aura) that they are going to strike.
Matt has struggled to continue with many of his favourite pastimes as the intensity of training, excitement, occasionally the heat or exhaustion means he has been unable to compete.
After many failed attempts to safely cycle the roads, mountains and bike tracks on a two wheeled bike, something needed to be done to maintain his confidence and keep him riding.
We felt he needed a bike that kept him upright should he suffer a seizure and one that maintained good stability. A bike that he could ride without fear of falling into the traffic. One however, that he could ride naturally, with pride, that was 'trendy' and able to ride anywhere he wished, independently.
We searched the internet but the bicycles available were generally for those with physical disability, not a hidden disability, such as uncontrolled epilepsy. Eventually we found a community interest company that offered specialised bikes for those with multiple disabilities.
We went to take a look and there it was, the answer - a German three wheeled trike - a Hase bike - called 'the Kettweisel'.
This trike was 'well cool' according to Matt! It could go fast and was multi terrain. There was even a special device that could connect a 2 wheel bike with the Kettweisel via a bracket. All we needed to do if he had a seizure, was to pull him home, strapped into his seat. Perfect!
The Kettweisel has had such a profound impact on Matt's wellbeing and independence. He is able to ride confidently and in absolute safety. His fitness and stamina has never been better. He feels normal, perhaps even elite. We are relaxed about riding together, we can enjoy the ride and the exercise, without fear.
It won't be for everyone, but for Matt and us, it has been one of the best decisions of his, now very active, life.
- A longer version of Matt’s story will appear in the September 2016 edition of our members’ magazine Epilepsy Today. Become a member