Award-winning actor 'regains feeling in feet' with new MND drug

A Belfast actor who won high praise for playing Richard III in a wheelchair, is hoping a new clinical trial drug will help him in his fight against Motor Neurone Disease (MND).

Michael Campbell, also known as Michael Patrick, was diagnosed with the terminal disease in February 2023.

MND is usually life-shortening and there is currently no cure, but treatment can help manage the symptoms.

Since beginning the trial drug, the 35-year-old has regained some feeling in his feet, and is hoping for further benefits.

"It was such a relief that the drug is doing something," he said.

"I'm probably still going to die pretty soon, but maybe I'll get an extra year or two."

It was while acting in a show at the Dublin Fringe Festival three years ago that Campbell, who has also appeared in award-winning police drama Blue Lights, started experiencing symptoms.

"I had to dance in the play, and I kept falling over," he said.

"I kept blaming the shoes being like, why have they me dancing in these clumpy shoes?

"But afterwards it didn't get better."

He said getting diagnosed with MND months later was "terrible".

"It was grim, it was hard, but I got a lot of love and family and friends to help me through it," he said.

Campbell's family had been fundraising to enable him to have private care.

MND is condition that affects the nerves found in the brain and spinal cord, which tell your muscles what to do.

It causes weakness that gets worse over time and can significantly shorten life expectancy.

International rugby players Rob Burrow and Doddie Weir raised awareness of the terminal neurological illness before they died, as did Irish journalist and broadcaster Charlie Bird.

In less than a year after diagnosis, Campbell was in a wheelchair as he could not stand up.

He is now losing power in his arms and is due to have a tracheostomy - an artificial airway - fitted in his throat this month to help his breathing.

A year ago, Campbell won one of the UK's biggest drama awards for creating and starring in an adaptation of The Tragedy of Richard III at the Lyric Theatre in Belfast.

He said it was "amazing to bring Shakespeare to Belfast" and put his own stamp on it.

"The way we did it was that Richard III, traditionally in the script, he's born disabled.

"We changed it so that he had recently been diagnosed with a disability, kind of like MND basically."

He said he hoped the play had created more awareness about the disease.

About one in 10 people with MND have a family history of the condition, like Campbell.

"We thought it might have been inherited because my dad and his brother both had it, but I never really thought of it as something that would happen to me.

"You always think it's going to happen to someone else," he said.

Inherited MND can happen when there is a change in a gene or genes that tell our bodies how to make or manage proteins in our bodies.

A changed gene can be passed down from parent to child.

There are a large number of genes which can cause inherited MND.

Campbell's family are affected by "one of the rarest genes".

"I think we're the only family in Ireland with this gene that causes MND, and it's called FUS," he said.

Campbell and his sister, who also has MND, are taking part in a clinical trial in Dublin, that specifically targets the FUS gene.

"The first 16 months I was on the trial it looks like I was on the placebo," he explained.

"When I've been on the real drug for four or five doses now, it does seem to be doing something because for the first time in over two years I can now wiggle my toes, which is amazing," he said.

Campbell's wife Naomi said his diagnosis was "a shock", but the trial has given them hope.

"When you hear a diagnosis like MND, a lot of people might curl up in bed or hide away or not know what to do with their lives," she said.

"I want to make sure that I have no regrets and I want to make sure that we take every advantage and live every moment that we can, whether that's just spending time together in our house or with family or doing bigger things like travelling."

Naomi Campbell said when her husband started having feeling in his toes it was "quite surreal" and "very overwhelming".

"Just to have that hope and faith that something will come out of this, that it will buy us more time together and hopefully for people who are either diagnosed and not as advanced as Mick or are yet to be diagnosed, that will give them an opportunity," she said.

Orla Hardiman, who is a professor of neurology in Trinity College Dublin and a consultant neurologist at Beaumont hospital, runs an MND service in Ireland.

She said MND has "taken [Michael's] life away from him" but she is "cautiously optimistic" about the trial.

"When you lose function with motor neurone disease it's gone, and Michael has experienced a little bit of new movement in his foot.

"That's giving us a great deal of hope that maybe the drug may be having an effect now," she said.