‘BRAIN IMPLANT COMPLETELY CHANGED MY LIFE’
DYSTONIA SUFFERER MAIREAD IS ORGANISING A WALK IN AID OF RESEARCH INTO CONDITION
IT left her unable to work or even drive, through its debilitating effects on her motor function and the chronic pain it caused throughout her life.
But Mairead Enright Kelliher never gave up in her lifelong battle with the condition and now, just three months after the kind of surgery that would once have been the preserve of science fiction, she’s living life to the full.
Dystonia is the rare neurological disorder the 36-year-old Lixnaw woman has struggled with since her earliest years, undergoing her first major surgery aged just five at a time when doctors had no real idea what was wrong with her.
Deep-brain surgery at the UK’s National Hospital for Neurology and Neurosurgery in London in May has completely transformed her life, however.
“I’m back at work and back behind the wheel as well,” Mairead told The Kerryman this week while organising a major fund and awareness-raising 5km walk for Dystonia Ireland in her home village for Saturday coming, September 24.
“They didn’t realise what I had when I underwent surgery on my neck at the age of five to allow me to move it, which I had not been able to up til then,” Mairead explained.
“I was eventually diagnosed with it, but it took a long time. It’s the third most common neurological movement disorder after Motor Neuron Disease and Parkinsons, which it can often be mistaken for.”
While there is a genetic variant for Dystonia, Mairead doesn’t actually have it. As she says: “Dystonia can affect anyone at any age.”
Mairead has been in the expert care of neurologist Dr Helena Moore at University Hospital Kerry these past seven or eight years, referred to London in May for a procedure that once would have been unthinkable.
“They basically implanted wires deep in my brain that are connected to a stimulator in my chest over which I have control. I can increase the stimulation whenever I need to,” Mairead explained.
That stimulation is key now to how Mairead manages the chronic pain she lived with for so long. Sending electrical impulses deep into her brain tissue, the stimulator is proving a lifeline.
“It’s like electrical shocks in your head but it’s nothing compared to the chronic pain I used to experience. I’ve seen a 70 per cent improvement following London.”
Another crucial part of her treatment and recovery in the UK was the presence of her family, including husband Niall Enright and sister Anna Marie (pictured above) who is helping Mairead organise the forthcoming walk.
“My family are just fantastic always. In fact they all came over to see me at the hospital in London.”
Mairead is now sharing her story in the hope of galvanising support for Dystonia Ireland.
“As far as I know there are just three of us in Kerry who have it, but there are 3,000 nationwide. Unfortunately there is no cure for Dystonia, but in raising awareness and funds that’s what we are working towards.”
Everyone in a position to walk on the morning of Saturday, September 24, is being urged to do so with the group setting out from The Dew Drop Inn at 1pm.