Inspiring stories: How runner is overcoming Stiff Person Syndrome
Running with friends at the weekend, I twice passed this lady. She was herself running at a good pace uphill. Unusually she was pushing a three-wheeled device.
Interested to know her story, we stopped for a chat. While the runner doesn’t want to be named, she said she is happy for me to publish a blog in the hope that others with a similar disability can find help in the same way.
The woman has Stiff-person syndrome (SPS), which is a rare neurological disorder with features of an autoimmune disease. I had never heard of SPS but after research I have discovered that it is characterised by fluctuating muscle rigidity in the trunk and limbs. There is also a heightened sensitivity to stimuli such as noise, touch and emotional distress, which can set off muscle spasms.
The runner told us she had a fairly mild version of SPS, however it has affected the coordination of her arms and legs. When she was first diagnosed, she spent most of her time in a wheelchair and was unable to enjoy getting out and about for exercise.
Following research, she came across the Swedish-made Trionic Veloped Sport, which she says was prohibitively expensive. She was fortunate to find a second-hand model for sale on-line.
The Veloped has given her back her freedom. It is meant for rugged terrain, with pneumatic tyres and an innovative climbing wheel so that no effort is required by the user when going up and down bumps and kerbs.
She added: “I can run every day with the support of the Veloped and this is good for my mental health, as well as my physical health.
“Many people are curious about the Veloped and some they think it is an aid to allow me to go faster. They even ask me if it is powered by a battery! But it’s simply a way for me to be able to go forwards. I can focus on what my legs are doing while my hands hold on to the Veloped.”
She covers some six to 10 miles each day on local roads – and she believes it would also be suitable for people with various conditions, including MS.
The runner added: “I think the NHS should look into buying some of these to help people to be more mobile. I really am very grateful that I have found the veloped.”