Disease robbed dad of his freedom .. and we could have it, too
Concern sons will inherit degenerative condition that makes you appear drunk
A FORMER firefighter who has an illness that makes him appear drunk fears his children will inherit his condition.
Martin Barker, from Glasgow, was in his mid 30s when he was diagnosed with Ataxia – a degenerative disorder which affects speech, balance and coordination.
The now 55-year-old was forced to take medical retirement from his job with the fire service.
He has been left wheelchairbound, unable to speak and has lost his independence following his diagnosis.
Martin’s family have learned to communicate with the proud dad, and his two boys Ewan, 24, and Michael, 28, act as his translator in public – but both now fear the hereditary condition will be passed onto them.
Ewan told the Record: “My dad was one of the lads. He had a busy social life and lots of friends – the disorder has taken away his freedom.
“Losing his speech was really difficult for us all. All of a sudden he couldn’t speak to anyone, whereas before you couldn’t shut him up.
“My dad’s symptoms began to progress. He would try to go to the pub and the bouncers wouldn’t let him in. They thought his staggering and slurred speech was because he was drunk. It really took a toll on him.”
Ewan continued: “My brother and I have discussed getting tested for the gene but neither of us want to know if we have it.
“It would affect me mentally. My brother recently moved in with his partner of 11 years.
“They have talked about him having the test before they have kids.”
Martin was unaware that Ataxia ran in his family until his sister, Karen, 56, an NHS nurse, was approached by a colleague who recognised her symptoms.
After a blood test confirmed Karen’s disorder, Martin decided to take the test too as he realised he was suffering
It’s been really hard to watch Martin’s independence being taken away from him JACKIE BARKER ON HUBBY’S PAIN
the same symptoms. Wife Jackie, 57, added: “It’s been absolutely devastating for Martin. He was diagnosed around our eldest son’s birthday.
“I just remember being in a haze, trying to take it in. I couldn’t get my head round the fact that our lives had changed in an instant.
“I’ll never forget that day. It has been really hard to watch Martin’s independence slowly get taken away from him.
“The final blow was finding out the condition could be passed to our boys.
“They have a 50 per cent chance of carrying the gene. They’ve seen first hand how the disorder unfolds.”
After he was diagnosed, Martin’s condition began to deteriorate. Jackie became his full-time carer and he became prone to falls. On one occasion he fell off his bike and broke his leg when cycling home from work.
Ewan added: “My dad was aware his symptoms were getting worse, but the day he broke his leg was a real turning point. He struggled to get up off the ground because his balance was off.
“He had been shouting for help but his speech was so slurred people were just walking past him. They assumed he was drunk too.
“He had to drag himself to someone’s front door and make signs for help. That was the moment he realised he wasn’t going to get better.”
Martin continued to work in the fire brigade, moving into an admin role when his condition could no longer handle the physical demands of the crew work.
He was forced to take medical retirement in 2016. The decision was a huge blow to the passionate firefighter who had “loved saving lives” during his 25-year career.
Ewan and his boyfriend, Lewis Callan, 23, are now running a 5K every day in July to raise money for Ataxia UK.
Ewan hopes telling his dad’s story will help to raise awareness of the condition and fund further research for future generations.