After Ian was diagnosed with vacuolar myopathy, he chose not to let this affect his active lifestyle. He uses an off-road scooter which gives him the freedom to visit places he enjoys the most, from trekking over fields to visiting the beach.
“I’ve always been active. I had a physical job and enjoyed sport. So as the condition progressed, all this stopped, right? Wrong. I started using a stick, and then progressed to crutches. When they weren’t enough, I was fitted with knee bracing. When I’m outside I use a wheelchair and when I’m out with the dog, I use an off-road scooter.”
Ian’s condition makes it difficult for him to walk, stand still or manage stairs. The off-road scooter gives him greater freedom to visit less-accessible places.
“One memorable occasion was meeting my friend Martin. It was good to see him enjoy the feeling of fun and freedom on the scooter, as he put it through its paces in a local wood. It may have a top speed of 5mph, but it does feel quick over rough ground.”
“Without my off-road scooter, getting the dog out would be impossible. Because it’s an all-weather machine, snow is also no problem. That means I won’t slip over when I’m out and can also go where cars can’t. The scooter enables me to live my life, doing the things I value.”
Ian is one of our team of Advocacy Ambassadors. They are all affected – directly or indirectly – by a muscle-wasting condition, and have knowledge and personal experience of navigating social and healthcare services. Specially trained in peer advocacy, they can help people to get the support that is essential to their health, independence and quality of life.
“I am learning every day. I learn from others I have met through my role as an Advocacy Ambassador and always been respectful of their rights to choose to use equipment or not.
“One thing I have learnt is to do what I value doing and cut out what I don’t. The team of Advocacy Ambassadors are there to help you on your journey. Just contact the charity and they will put you in touch with one of our team. You are never alone on your journey.”
If you’d like to speak to someone about your experience of living with a muscle-wasting condition, or have any queries about services, benefits or equipment you’re entitled to, contact us. We’ll put you in touch with someone like Ian.