Portrait no.1

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1/26 Miles Pilling was diagnosed with the primary lateral sclerosis variant of motor neurone disease in August 2013. “My GPs kept telling me I had a bad back. One had even told me to ‘learn to live with it’. Bad backs went with the territory as a news cameraman – part of my job at the BBC. I went along with that diagnosis for two years, but deep down I knew something else was going on. Eventually I couldn’t use my camera kit and was taking sick days off work so I paid to see a private orthopaedic consultant as the NHS waiting list was so long. I was then given painful treatments on my spine that were totally unnecessary. My symptoms of stiffness, weakness and difficulty walking kept getting worse and I started asking medical staff whether I should see a neurologist. It was a massive uphill struggle to be taken seriously. I finally got a referral to see a neurologist and soon after my GP told me I might have multiple sclerosis. I returned home that same day to find a hospital letter telling me my neurology appointment had been cancelled because of staff shortages and they could not offer me another one.That was a massive double blow! When I got over the shock I began phoning neurologists' secretaries on numbers I got from the internet. I found one who was sympathetic and she made me an NHS appointment. I was asked to walk across the consultation room and the neurologist said, ‘for somebody of your age to be so badly disabled, we should have been treating you as an urgent priority’. I received a phone call a few days later at work whilst editing a news story asking me to go into hospital that night. Ten days later, after having a barrage of tests, I was diagnosed with primary lateral sclerosis variant motor neurone disease. In a way I have won the MND lottery because PLS is the rarest form of MND and the one that develops the slowest. Sadly my symptoms meant I had to stop working eight months later. Since then I have been trying to stay as fit as possible whilst raising money and awareness of MND by exhibiting photographs I take from my mobility scooter and giving public talks. Donate here – http://www.justgiving.com/fundraising/26miles4mnd #mnd #running

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