Parkinson’s Awareness Week: Ipswich man tells his story
An Ipswich man who was diagnosed with Parkinson’s disease four years ago has spoken about why he kept his symptoms hidden from his family and how the condition has impacted his life.
New research released by Parkinson’s UK to mark Parkinson’s Awareness Week shows that 42% of people in the East of England have felt the need to lie about having the disease due to fear or embarrassment.
James Scott was working as a high-earning English tutor in Moscow where he lived with his partner and young daughter when he first realised something was wrong.
Mr Scott started to get stiffness in his left arm and hand, a throbbing in his head and he developed a chronic stammer.
“I initially tried to hide my symptoms. I would pretend everything was normal, and tried to carry on as if nothing was happening,” he said.
“My partner knew something was up. For around two years I tried to pretend nothing happened. After considerable questioning, she forced me to seek medical advice.
“I paid to see the best medical professionals in Moscow. I was told bluntly by a neurologist that I had Parkinson’s. There was no support and no help offered. I was told I had Parkinson’s and had to live with it.
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“In the time I knew something was wrong, but had not been diagnosed, I spent many evenings crying and drinking and trying not to feel sorry for myself. I suffered alone, and would not open up about it. I guess I was being typically English, trying to have a stiff upper lip and dealing with it in my own way.”
Mr Scott, who grew up in Ipswich and attended St Alban’s Catholic High School, was diagnosed with Parkinson’s disease at the age of 48 – 12 years younger than the average age of onset.
Teaching became more and more difficult as Mr Scott’s students noticed that he was struggling to speak.
Last July he returned back to his family home in Goring Road, Ipswich, to live with his 87-year-old father Ray Scott, who was also diagnosed with Parkinson’s about three months ago.
“I could not afford to live in Russia,” Mr Scott added. “I had to frequently return to England because of my Parkinson’s, alongside paying for speech therapy and spending large amounts on medication and costly brain scans.
“I felt I was slowing down my family. It was heart-breaking telling my family I was leaving Moscow.”
The now 51-year-old has regular contact with his teenage daughter Alex, who is still living and studying in Russia, but he said he struggled with the distance between them.
Mr Scott now wears a wristband that says: ‘I have Parkinson’s please give me time’, so people understand why he acts and speaks slower.
“I get the impression that people look at me and think, ‘he’s a bit weird, there’s something wrong with him’,” he said. “People in shops immediately and instinctively realise this chap is not all there, a sandwich short of a picnic.
“It’s quite upsetting but I just want to reassure them that I may come across like a zombie but I’m really just a regular guy underneath that.
“I’ve got a good sense of humour but it’s difficult for it to come out, especially witty comments – I can’t get them out in the time and by the time I say it the moment has gone.
“I certainly feel much more comfortable in the presence of other people with Parkinson’s.”
Around six months ago, Mr Scott teamed up with charity Parkinson’s UK to set up a support group in Suffolk for working-age people with the condition.
It is called 24 Hour Parky People and the group meets every three weeks at Martlesham Black Tiles pub.
“Maybe it’s cold comfort but knowing that other people are experiencing the same symptoms can help,” Mr Scott said. “The best way of describing Parkinson’s is you are just not with it, you are just not switched on.
“It’s sometimes like I’m looking down on myself, like a feeling of being dizzy but not being dizzy.
“Certainly on the one hand since I’ve been back in Ipswich life has been a much slower pace, less hectic and demanding, and my dad has been very good to me, but if I’m honest there has been a slight deterioration.”
For the past year Mr Scott has been a member of Ipswich JAFFA Running Club and he said running with others helped him cope with his symptoms.
“The thing I like about running is you can quite easily chat to people – there’s a sense of belonging when wearing the club shirt,” he said.
“Also when I’m running people tend not to notice I have a bit of speech impediment because I just come across as someone who is struggling with running.”
For advice or information about Parkinson’s disease, visit: www.parkinsons.org.uk or call the free helpline on 0808 800 0303.