Airdrie & Coatbridge Advertiser
STRUCK DOWN IN PRIME OF HIS LIFE
Dad left unable to hold his children
An Airdrie dad- ofthree has spoken of his distress over the debilitating brain disorder that has changed his life forever.
John Inglis, 44, was forced to give up his job as a taxi driver when he developed dystonia in 2012.
The rare condition causes John “excruciating” pain and even rendered him unable to hold his young daughter Lucy when she was a baby.
The irreversible neurological disorder means John’s neck muscles contract uncontrollably and the repetitive movements twist them into awkward and uncomfortable positions.
Long- term partner and mother of his children, Maggie Herron, has had to give up her job to become housebound John’s full-time carer.
The brave dad has now shared his story to highlight Dystonia Awareness Month.
In 2012, John Inglis was a happy-go-lucky, golf-loving taxi driver looking forward to the birth of his third daughter with partner Maggie Herron.
Little did he know that a sudden and debilitating neurological condition would turn his life upside down and render him unable to even hold little Lucy.
The Airdrie man had been struck down by dystonia – a condition that causes constant and excruciating contractions in the neck muscles, leading one’s head to tilt forward uncontrollably, backwards or to the side in an extremely painful manner.
Now, as Dystonia awareness month begins, 44-year-old John wants others to be aware of the rare, chronic disorder which only affects around 65,000 people, to varying degrees, across the UK.
John told the Advertiser: “I get a contraction almost every minute of every day.
“I was asked by a few taxi customers one day why my neck kept twitching to the left, but it wasn’t sore at that point.
“I went to see three different doctors who gave me muscle gels and put it down to shoulder pain.
“I had no idea it was serious until another doctor recommended I see a neurologist.
“As soon as I heard that word I thought it sounded very extreme.”
Although dystonia, also known as spasmodic torticollis, doesn’t have a specific identifiable cause, there are a few suspected origins including head trauma, viral infections and whiplash.
While medics have not been able to confirm the genesis of John’s condition, he suspects it comes down to being in the wrong place at the wrong time.
He said: “I was in a car crash in Thrashbush seven years ago.
“I was just driving along when someone drove straight out of a giveway junction – there was nothing I could do.
“It wasn’t an overly severe collision but it was quite bad.
“I broke my wrist and suffered whiplash – doctors think that might be what triggered the dystonia.”
After being diagnosed with the condition, John’s life became unrecognisable from the one he led beforehand.
He explained: “I didn’t leave the house for about 18 months because I was struggling with depression and anxiety.
“The pain in my neck was getting worse and I could barely move it.
“It’s still hard to keep myself occupied. I don’t do much.
“I used to play golf with my colleagues which was brilliant but that’s out of the question now.
“The worst part is not being able to do anything with my family.
“When Lucy was born I couldn’t even lift or bath her because my neck was always stuck or twitching painfully.
“Our kids are 16, 12 and seven years old and it’s really tough not being able to do what I want to with them.
“My oldest, Ellie, has had to grow up really quickly and cares for me a lot. She’s my rock, along with Maggie.”
John and Maggie met during his 12year stint as a taxi driver and when he became unable to drive, she gave up her job to care for him.
He continued: “I couldn’t get by without Maggie, she is my full-time carer.
“She gave up her job in the taxi office to look after me.
“That’s how we met, she used to chat me up over the radio!
“To have my life essentially taken away in the blink of an eye is hard but she has been there with me the whole way.
“I’m surrounded by good family on both my side and hers.”
John initially underwent four different botox treatments to try to alleviate the pain in his neck, but none helped.
There is no cure for the disorder, only treatments to make sufferers feel more comfortable.
Earlier this year John underwent deep brain stimulation (DBS) which involved having a small box embedded into his chest which transmits electric signals to his brain via wires travelling along his neck and behind his ear.
John added: “There will be a lot of people out there with symptoms who will have no idea they have a brain condition.
“I want people to recognise the symptoms of this and if they’re having involuntary neck movements, to go and see a doctor urgently.
“I go to a wee support group in Airdrie’s Weaver Cottages every second Wednesday with around 10 other people in the Monklands area.
“It’s been a lifesaver for me; we just sit and chat with a cup of tea and discuss things that have helped us.
“You realise you’re not struggling alone, so if you are worried about it or have been diagnosed then I really recommend coming along to our support group.”