MND drug might ‘give me an extra year or two’

Aileen MoynaghBBC News NI health correspondent

BBC Michael Campbell has a red beard and blue eyes. The top of his wheelchair is visible behind his head. He wears a navy blue shirt underneath a white t-shirt. — Michael Campbell was diagnosed with the terminal illness in February 2023

The Belfast actor, who has been widely praised for his portrayal of the wheelchair-bound Richard III, hopes 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 illness in February 2023.

MND It often shortens lifespan and currently has no cure, but treatment can help manage symptoms.

The 35-year-old patient has started to regain some feeling in his feet since the start of the trial drug and hopes to see further benefits.

“It was very reassuring that the drug was doing something,” he said.

“I’ll probably still die pretty soon, but maybe I’ll get an extra year or two.”

Campbell, who also starred in award-winning police drama Blue Lights, began experiencing symptoms three years ago while performing in a show at the Dublin Fringe Festival.

“I had to dance in the play and I kept falling down,” he said.

“Why are they making me dance in these lumpy shoes?” I kept blaming the shoes.

“But later the situation did not improve.”

He said it was “terrifying” to receive a diagnosis of MND months later.

“It was brutal, it was hard, but I have so much love, family and friends to help me get through it,” she said.

Campbell’s family was fundraising so he could receive specialized care.

What is MND?

Michael Campbell is seen in a wheelchair with his wife Naomi

Michael Campbell is seen in a wheelchair with his wife, Naomi. A tube comes out of his mouth. His wife bends over and ties her feet to the wheelchair straps. Michael wears dark clothing with a white T-shirt. His wife is wearing a pink and purple argyle sweater and dark trousers. Her hair is in a bun. — Michael Campbell is seen in a wheelchair with his wife Naomi

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

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

International rugby players Rob Burrow and Doddie Weir raised awareness fatal neurological disease before death Irish journalist and broadcaster Charlie Bird.

Less than a year after his diagnosis, Campbell was confined to a wheelchair because he could not stand up.

He is now losing the strength in his arms and tracheostomy An artificial airway was inserted into his throat this month to help him breathe.

Michael Campbell won the Jury Prize at the Stage Awards for creating and starring in his adaptation of The Tragedy of Richard III.

Johnny Frazer Michael Campbell is seen in a wheelchair on stage. He wears a white suit and has a long golden crown on his head. Two more artists dressed entirely in black can be seen in the background. — Michael Campbell won the Jury Prize at the Stage Awards for creating and starring in his adaptation of The Tragedy of Richard III.

A year ago Campbell wins one of Britain’s biggest drama awards For creating and performing in an adaptation of The Tragedy of Richard III at the Lyric Theater in Belfast.

He said it was “wonderful to bring Shakespeare to Belfast” and put his own stamp on it.

“The way we did it was that traditionally in the script, Richard III was born disabled.

“We recently changed this so that he was diagnosed with a disability such as MND.”

He said he hopes the play will raise more awareness about the disease.

‘I can move my toes’

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

“We thought it might have been inherited because my father and his brother had it, but I never thought it would happen to me.

“You always think it’s going to happen to someone else,” he said.

hereditary MND It can happen when there is a change in a gene or genes that tell our body how to produce or manage proteins.

A changed gene can be passed from parent to child.

There are many genes that can cause hereditary MND.

Campbell’s family is affected by “one of the rarest genes.”

“I think we are the only family in Ireland with this gene that causes MND and it is called FUS,” he said.

Campbell and her sister, who also has MND, are participating in a clinical trial in Dublin specifically targeting the FUS gene.

“For the first 16 months I was in the trial, it looked like I was on a placebo,” he explained.

“Now when I take the actual drug for four or five doses, it seems to be doing something because for the first time in over two years I can now wiggle my toes, which is great,” he said.

Naomi Campbell says drug gives them some hope

Naomi Campbell's husband is wearing a pink and purple argyle sweater and dark trousers. Her hair is tied. He looks at the camera with a blue table to his left. There is a lamp on the table. — Naomi Campbell says drug gives them some hope

Campbell’s wife, Naomi, said his diagnosis was a “shock” but the hearing gave them hope.

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

“I want to make sure I have no regrets, and I want to make sure we take every advantage and live every moment we can, whether it’s just spending time at home or with our family, or doing bigger things like traveling.”

Naomi Campbell said it was “pretty surreal” and “very overwhelming” when her husband started feeling it in his toes.

“Having hope and belief that something will come out of this, that it will give us more time together and hopefully for people who have been diagnosed and aren’t as advanced as Mick or haven’t been diagnosed yet, it will give them an opportunity,” he said.