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VIDEO: Family capture daily struggles of north-east dad in short films as he battles MND

When Stephen Black’s family found out he had been diagnosed with motor neurone disease (MND), it was described as “earth shattering”.

For the retired Banchory oil worker, a father-of-four, the reality took many months to sink in.

A keen skier, hillwalker, rower, golfer and Scottish country dancer, he realised something was wrong when his legs became weak in January 2015.

The 70-year-old now uses a wheelchair and a variety of specialist care equipment to go about his daily life – including hoists to help him get in and out of chairs.

And now his son, Ewan Black, has created a string of videos to help family friends come to terms with his father’s condition.

The 23-year-old actor, who works from London, said he began filming Mr Black’s daily struggles last year in the hopes it would help people become more at ease when speaking to him.

Ewan said he hoped the videos – which have been published online and across social media and have been viewed hundreds of times – will get people to talk about the condition “in a positive way”.

Stephen with sons, Duncan and Angus in one of the videos.
Stephen with sons, Duncan and Angus in one of the videos.

The most recent short film is called Stand Up Stevo, and shows how Mr Black gets out of his living room chair with the help of his wife, Mary, and a standing aid.

Others include How to Talk to Stevo, which features Ewan’s siblings Angus, Duncan and Rhona showing the best and worst ways converse to someone with MND.

Others, which show Mr Black and his daily routine in Banchory, include A Day in the Life of Stevo and Rejoice in the Hoist.

Last night Ewan said: “I first started doing it because I just thought it would be a quite interesting way for people to see how someone with MND copes on a daily basis.

“Another reason I did them was because people didn’t know how to speak to my Dad. We’d make them essentially to get people talking about the condition but in a positive way.

“The videos kind of skip a bit of a conversation you don’t really want to have.

“I think lots of people have been watching them and been really successful and I think it is a great talking point, a positive starting point.”

Stephen Black in a sit ski during a family holiday last year.
Stephen Black in a sit ski during a family holiday last year.

Ewan makes his films under the banner of Family Noir Films, using just his phone. They are laced with a sense of humour which he said is a trademark of the fun-loving family.

He added: “It is hard. It is really, really one of the worst diseases you could get, ever. But we are still the same as before. It took us a while to realise we can still be like that, I suppose that is where the videos come from.

“Part of that is trying to keep positive and outgoing, although we have got this disease hovering over us. Every day is a learning curve, there is something different everyday. Everyone is coping, there are down days and up days.

“Dad is OK, he just doesn’t have any arm strength or leg strength. He’s at the stage where he needs people all the time.”

He also praised his “incredible” parents for having the courage to take part in the short films.

Mr Black retired from his 25-year career as a contracts manager in the oil industry in 2011.

Mrs Black said: “It is just a means of letting people see what is happening and how we get Stephen about it.

“Ewan has been doing this for about a-year-and-a-half now, it was really to let folk see, like the family living far away. A lot of people have responded to it.

“It all kind of kicked off when you had the ice bucket challenge. A lot of people started bringing MND to the light.

“I don’t think people really understood how you got someone out a wheelchair. I think most people of my generation think you have to do it bodily.”

MND damages the nervous system, leading to muscle weakness and wasting, affecting the nerves in the brain and spinal cord.

Degeneration of the motor neurons leads to increasing loss of mobility and a person’s ability to walk, speak, swallow and breath.

The videos can be viewed at:

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