By Richard Morgan
BBC News NI
When Michael Campbell, an actor and writer of BBC series including the comedy-drama My Left Nut, fell over during a dance performance last year, he put it down to badly-sized shoes.
But it wasn’t the shoes – it was his leg.
The 32-year-old had the first indications of motor neurone disease (MND).
The actor, also known as Michael Patrick, knew all about the disease – his father died from MND in 1998.
But that has not stopped him from making the best of things, as he told BBC News NI’s Evening Extra programme.
“I’m a firm believer that most people have a base level of happiness or contentment in their life and I think I’m very lucky that I’m a happy-go-lucky guy,” he said.
“Although this is objectively terrible, I’m still trying to find joy where I can.”
‘My leg just went’
MND is an uncommon condition that affects the brain and nerves. It causes weakness that gets worse over time and can significantly shorten life expectancy.
Michael said that his leg issue first came to light when performing in a play in Belfast and Dublin.
“There was a dance segment and I noticed that my foot was dragging and I fell over once or twice during the dancing.”
Initially he put it down to the shoes being big and clumpy but afterwards he rested up and tried to go for a run.
“I got about 500m into the run and my leg just went so I knew there was something much worse.
“My GP was baffled by what was going on, an MRI came back clean – and then, with my family history, they did the nerve conduction test and that test had shown indications of MND.”
Michael watched his own father die from the disease and is aware of how it will affect his life.
“It’s a degenerative illness which is fatal at the end of the day. I suppose you have to get through it as best you can.
“My dad died when I was eight years old. There’s a bit about it in the TV show My Left Nut, which I wrote. I’m one of four children and my mum raised us all. She’s brilliant, she’s raised £100,000 for a motor neurone disease charity.”
In recent years, Michael – along with his creative partner Oisín Kearney – has encountered success, not just with My Left Nut but with other projects such as the BBC Radio 4 sci-fi drama Bitter Pill.
He also has a considerable list of screen credits and performed with the Royal Shakespeare Company.
Now, while continuing to write and perform, he is seeing the future in stages – he has things to look forward to, including his wedding later this year.
“It’s good to have milestones. My right leg is very, very weak, my left leg isn’t too bad so I’m walking currently with a stick, but it will get much worse.
“I wanted to go to Italy, so that was the first milestone and the next is the wedding in September, then we will see. It’s hard to make plans because we don’t know how quickly it is going to progress.”
Michael is also seeing the silver linings in how the disease has emerged.
“I got a bit lucky, considering, obviously it’s not good luck – but the fact is it has started in my legs.
“The thing about MND is once it gets to your lungs, that’s when it is very bad and you stop breathing.
“When my dad first started realising things were going wrong it started in his upper body, in his arms, and spread to his lungs quite quickly. He was diagnosed in February 1998 and died in October 1998.”
The search for a cure
Although much has been learned about MND over the last number of decades, there is still much more to uncover.
Prof Karen Morrison, who is a consultant neurologist at the Belfast Trust with expertise in MND, said the “holy grail of changing the ‘a’ in care to a ‘u’ in cure has remained elusive”.
“The sums involved in trying to do research on curative therapies for MND are eye-wateringly huge. The disease is rare so here in Northern Ireland we don’t have enough patients to run trials just for people with genetic mutations locally.
“We have to be part of large international consortia.”
Asked if she thinks there will be a cure, Prof Morrison was hopeful.
“I really do think in the not too distant future there will be therapies for some genetic forms of adult MND and I think there will be other treatments to treat the symptoms of the disease so we will have a significant effect on survival.”
Meanwhile, Michael is approaching the months ahead with optimism.
“I’ve been able to get on a new drug call Riluzole and I’m hopefully going to be starting an experimental drug trial which targets the specific gene that I have. It’s not a cure, but it’s moving forward.
“I’m still writing. I have a five-part series on the BBC Radio 4 as part of the Limelight series. I am also performing in Dublin.
“There’s no point saying this is unfair. Life is unfair. Everyone dies at some point and it’s the only thing every single person has in common.”