A West Bridgford man has spoken of why he delayed going public with his Parkinson’s disease for 18 months after being diagnosed aged 37.
Steve Moss spoke out as figures are released showing around a third of local people hide or lie about their symptoms of the condition.
He is backing Parkinson’s UK’s efforts to try to end what the charity calls an “alarming level of fear” among people faced with a diagnosis.
Although he told very close family and friends and his boss, at first he kept his condition secret from others.
Steve, now 41, said: “It hit me like a train – I was in my late thirties, seemingly invincible. To discover I had Parkinsons was a huge shock.
“I hid my diagnosis because it took me time to adjust. I had a feeling of uncertainty about how people would react to me, and on a practical level whenever I felt like I was tremoring, I’d actually sit on my hand in meetings to disguise the symptoms.
“It took me quite a while to get my head round, and to find a way that I was telling people I was working with and my wider circle of friends.
“But everyone I have told has been caring and understanding.”
But his diagnosis didn’t stop him from climbing the 19,000ft-high Mount Kilimanjaro, Tanzania, with a close friend two years after he was given the news.
Too many people are struggling
Steve Ford, chief executive of Parkinson’s UK said: “Too many people are struggling with their diagnosis alone because of fear of what people might think, say or do.
“We know that the right support, whether through family, friends or Parkinson’s UK, is vital for those with the condition, to help them come to terms with their diagnosis and know that they’re not alone.”
Parkinson’s is a progressive neurological condition leading to the loss of nerve cells in the brain.
It does not directly cause people to die, but over time can lead to them suffering a serious decline in mental and physical health, although its progress can be slowed by medication.
About one person in every 500 in the UK has Parkinson’s and it normally affects people aged 50 or over.
Steve also had a piece of advice for anyone also facing up to the condition.
“Seek help, talk to people and look for the positive stories,” he said.
“It’s not a pleasant condition to live with. It is degenerative but with medication you can continue to lead a relatively normal life.”
