As April 11 marks World Parkinson's Day, a Holbeach St Johns man speaks about his diagnosis of the condition
Parkinson’s Disease is still a condition that is not entirely understood - and it can take time for a diagnosis to be made.
For Roy Coxon, who lives in Holbeach St Johns, signs that anything was out of the ordinary came on suddenly.
“I was walking along the cliff path in Bridlington when I kept tripping,” he remembers. “I thought it was my shoes and I thought no more about it.
“Then it kept happening,” his wife Jane added. “We asked about it possibly being Parkinson’s and we were told it could be a ‘benign essential tremor.’” This is described as a movement disorder which presents as an uncontrollable shake or tremble of part of the body.
Roy, now aged 75, was in his mid-60s when the symptoms first came on.
“It went on for a couple of years and we just accepted that diagnosis,” he said. He was also suffering back pain.
“I have always suffered back ache since a motorbike accident in my 20s and we thought it might be connected. Apparently, if you experience a traumatic event in your life it can set things off.
“I went to Peterborough City Hospital for an MRI scan to see what was causing the back pain. By then I was 73-years-old.”
But the scan did not show anything visible that could be causing the pain.
“It was suggested I see a neurologist as he (the consultant) thought it was some sort of nerve pain,” Roy said.
“I went to this specialist and I was sitting in a chair and was told to get up and walk towards her.
“She watched how I was walking and said I had early stage Parkinson’s.”
Both Roy and Jane (70) explain that a lot of people who have the condition do not realise that they have it.
“If you were to talk to a range of people with Parkinson’s you would not find the symptoms all the same,” Jane said.
“You can have one symptom, or many symptoms,” Roy explained.
And they say that the symptoms can alter from hour to hour within a day.
“You can wake up in the morning and feel okay but halfway through, the day feels the opposite, or you can wake up feeling that you can’t get going and later feel great.
“It is an annoying and unpredictable disease,” he said.
Roy and Jane would previously go for long walks together. Roy used to be an osteopath, running his own clinic on London Road in Spalding, and before that was a qualified machine tool engineer.
“We were really into country walking,” he said. “I have done all the major paths, including the Pennine Way, the North Norfolk coast and backpacked around the Pembrokeshire coast path.”
Roy has a walking stick now and a walker when he needs it for extra support. “I suffer pain but I can walk,” he said.
“Some days are better than others,” Jane, who is also Roy’s carer, added.
She helps Roy to get dressed and put his socks on, and he is able to drive still on good days.
“It slows you down,” he added. “I was a 90mph person. Now I am a 30mph person.
“I have a fairly cheerful demeanour. But you can look miserable. It’s called the ‘Parkinson’s mask.’”
This can give the appearance of looking ‘miserable’ even when the person is not.
“A friend said to me ‘why are you looking so miserable?’ I can laugh about it but some people can’t.”
Jane said to Roy: “I think the turning point was once you got on your medication in 2016, once you got a diagnosis and going to the support group in Hull. There was someone to meet and greet you and it was a very friendly group.”
“I was never really a group type of person but I found it very beneficial and found out what other people have got,” Roy said.
Today, Roy is chairman of the Spalding and district Parkinson’s branch and Jane looks after the admin and helps put together the programme of events.
“The committee is absolutely brilliant and very hardworking,” he said.
The group, which is marking its 10th anniversary, is open to both people with Parkinson’s and their carers. They meet at Pinchbeck Village Hall on the third Thursday of every month, except August.
There are exercise classes led by Mel Roberts, who is trained in delivering exercise for people with Parkinson’s, plus organised music events, bingo and other activities.
And as well as providing support for people with Parkinson’s, their carers and families, the group also does its own fundraising and donates money towards research into the disease.
Members took part in a sponsored walk at Burghley House near Stamford, at the end of September, raising £2,000.
Tickets are available for an afternoon tea to tie in with World Parkinson’s Awareness Day, at Pinchbeck Village Hall on Sunday, April 7, at 2pm. The cost is £5.
For tickets or more information about the group, contact Roy or Jane on 01406 540487, or email: firstname.lastname@example.org
WHAT IS PARKINSON’S?
The charity Parkinson’s UK, explains on its website: “Parkinson's is a progressive neurological condition.
“It develops when cells in the brain stop working properly and are lost over time. These brain cells produce a chemical called dopamine.
“Symptoms start to appear when the brain can’t make enough dopamine to control movement properly.”
It adds that the number of people diagnosed with Parkinson's in the UK is about 145,000 - one adult in every 350.
Parkinson's is more common in older people, but it can affect people of any age.
Actor Michael J Fox and comedian Billy Connolly are among those who have been diagnosed with Parkinson’s.
More help and advice can be found via: www.parkinsons.org.uk