Newcastle man’s charity cycle to Cork

Newcastle man’s charity cycle to Cork

17 October 2018

ON one of the happiest days of his life, Newcastle man Barry Johnson was struck down by a rare and incurable condition.

The 63 year-old was about to fly to England to see his first baby grandchild when he developed double vision in February, 2016.

Later diagnosed with Myasthenia, a neuromuscular condition which weakens muscles, Barry became of one of 80 people living with it in Northern Ireland.

Instead of allowing the condition to dictate how he spends the rest of his retirement, Barry has taken on several cycling challenges.

He has raised more than £5,200 for the Myasthenia research and support charity, Myaware, by cycling 340 miles to Cork in one week.

Leaving on Saturday, August 18, Barry cycled between 50-60 miles each day, to reach Cork eight days later with one rest day.

He handed over the cheque to Myaware last week to be used to fund research in this relatively unheard of condition.

Delighted that he has also managed to take on a physical challenge, Barry says he’s determined not to let Myasthenia get the better of him.

“I’ve been fit and healthy all my life but suddenly I got double vision going through Gatwick Airport with my wife Roisin. When I learned later that I had Myasthenia, it all came as a bit of a shock at the time,” said Barry.

“It’s a rather debilitating condition which there is no cure. It’s an illness which stops the muscles working properly. In my case it manifested itself from the onset of double vision which I had on and off for a full year which was very unpleasant.”

Double vision can either be vertical or horizontal and unfortunately Barry’s double vision was both.

“Myasthenia affects people in different ways,” said Barry. “In my case, my eye muscles were particularly affected. My double vision  was very nasty and I needed some corrective work done to my glasses. My eyesight is fine but the messages from the nerve ends weren’t getting to the muscles. 

“There are also periods of fatigue but for some people the condition can affect their leg muscles so they can’t walk or their throat muscles where their speech is affected.”

Barry says that Myasthenia can impact on people in their early sixties but the medical profession don’t know why.

While there is no cure, the condition can be managed with medication. 

But for Barry, exercise and his determination not to lie down under the condition really help him manage.

He said: “In a sort of perverse sort of way, if I sit at home and watch the TV and don’t do very much, I feel worse so exercise really helps me to manage my condition and cycling seems to suit me.”

With the help and support of the team at the Royal Victoria Hospital in Belfast, Barry says that he is 

doing well so far. But the condition is unpredictable and he does not know what lies ahead of him.

“I’m trying to fight this  condition,” he said. “The first year it was really controlling until I got to grips with it when my medication was sorted out. From the beginning of last year, I began to think most positively. I’m going to live my life the best I can.”

To contributed to Barry’s appeal for Myaware, please visit https://www.justgiving.com/fundraising/barry-johnson6

For more information on Myasthenia and the Myaware support groups, visit www.myaware.org.