Sudden noise, unexpected movement or even the sound of someone calling Miss Aveling’s name, would send her arms or legs into spasm.
But a pilot program for virtual personally held budget funding which gave the 55-year-old access to physiotherapy at Medway Community Healthcare CIC in Kent proved life-changing.
“I’ve got a new pair of legs!” the Chatham resident said, laughing.
Miss Aveling had previously received botulinum injections at the back of her thighs, inner thigh and calves about three or four times a year to minimise muscle spasticity but did not have any neurophysiotherapy. Helen wanted to use her virtual personal health budget for massage but following her first visit to neurological physiotherapy clinic she changed her mind for good.
She said using her virtual funding to add physiotherapy sessions to “spread it (botulinum) all over my muscles” had dramatic results.
For the past two years, Ms Aveling has worked with clincal lead and neurological physiotherapist Glady Nadar Arulmani and diligently practised at-home exercises to improve her balance, muscle tone, dexterity and speech.
“I have learned how to control my muscles in my legs in a way that my mother would never have thought possible,” Ms Aveling said.
“My speech is clearer on more ‘good’ days and I stroke my cat when she’s curled up on my lap without the jerkiness of former years.”
Ms Aveling, who uses a motorised wheelchair, said she no longer relies on tight ankle or waist straps for balance and can go barefoot on hot days.
“All these things will never set the world on fire, but they have changed my life,” she said.
Miss Aveling, who is writing a fantasy novel, said she gave up on physiotherapy as a teen in the late 70s, when she believed adults were left to “simply live with cerebral palsy”.
“What is crucial for GPs and other healthcare professionals to know is how much things have changed...it is quite simply the difference between sweet and bitter,” she said.
Medway Community Healthcare CIC neurological physiotherapist Glady Nadar Arulmani said: “One thing burning in my mind is a lot of adult cerebral palsy patients are missing out on access to neurological physiotherapy.”
“They are seen (by physiotherapists) regularly as children, but the moment they finish schooling they are completely lost in the system,” he said.