MND sufferer raises wheelchair consumer issues

Euan MacDonald. Picture: Comp

Euan MacDonald. Picture: Comp

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THE wheelchair is a hulking great power-assisted giant of a machine, and Euan MacDonald travels in it hooked up to the ventilator that pushes air into his lungs.

Not the easiest beast to manoeuvre on a night out on the town, and certainly not the typical accessory most music fans pack for a long weekend at T in the Park.

But dad-of-two Euan, who suffers motor neurone disease (MND), his mind and spirit undaunted, refused to allow its relentless grind rob him of some of the very things that enrich his life.

Driven by a determination to enjoy what remains of his life – despite the cruel hand it had dealt him – he set off to football matches, T in the Park, days out to Edinburgh Castle, pubs and restaurants, squeezing his power chair through narrow doorways and negotiating disabled loos with doors that opened in, not out.

On the way, he found disappointing places that claimed to have disabled access only for Euan to be frustrated in his efforts to get inside, and there were caring and considerate venue staff who, saddened that their facilities weren’t quite up to scratch, pulled out the stops to ensure he enjoyed his visit.

However, says his sister, Kiki, each trip to a previously unvisited venue brought stress, uncertainty and the worry that Euan would arrive only to have to turn away, disappointed.

And they realised that if it was happening to them, then it was almost certainly happening to every other person with a mobility problem.

Now, not so much in spite of the condition that has stolen his speech and has left him confined to his chair for the past four years but as a result of it, Euan and Kiki are using their personal experiences of the places they have visited and combined them with reviews from others to create a groundbreaking online guide for anyone touched by mobility problems.

As more reviews flow in and venues grab the chance to highlight their efforts to ensure they are accessible to all, it’s hoped that their new Euan’s Guide website will become a national resource to help make life easier, and more enjoyable, for millions.

The idea to set up a specialist access for all website was inspired after Euan and Kiki realised their options of places to go had shrunk to only a handful of Edinburgh bars and restaurants they knew for sure could handle Euan’s needs.

“I wanted to go out for a drink with some friends, somewhere new, and I couldn’t find any information on accessible bars in Edinburgh,” Euan writes. “I had lots of information about local places with disabled access that I did visit, and thought I’d like to share my knowledge and figured that there must be thousands of people like me who have the same issues.

“Coincidentally, Kiki was thinking the same thing at the time. We decided to take this a step further and create a website that will benefit the whole disabled community.”

Although just weeks old, the website already contains details of the disabled facilities and access at more than 90 Edinburgh venues and 270-plus nationwide. It also provides information about how easy – or not – it is to visit places which might typically be considered challenging even for some more mobile visitors, such as T in the Park, old theatres, historic buildings and nightclubs.

Indeed, one of the surprising places to receive a five-star review is the Kinross music festival, where Euan and Kiki found staff keen to help, disabled access viewing platforms near the stage and even blankets on hand when the night turned chilly.

And, of all places, Edinburgh Castle received a five-star review for its efforts to make large areas of the historic monument accessible to wheelchair users.

Not that 11 years ago Euan could have imagined that one of those wheelchair users might be him.

Back then, he was a high-flying investment banker in London on a six-figure salary. He loved rugby, skiing, running and football.

All that changed when he was riding his bike and noticed a strange and sudden loss of power in his left thumb as he tried to change gear, accompanied by a twitch in his shoulder. It persisted, he checked the internet and hoped what he was reading was wrong, only for it to be confirmed two months later in a devastating diagnosis.

MND leads to a progressive weakening of the muscles, caused when the nerves which send signals between the brain, spine and muscles stop working properly. The cause is unknown, and some patients fade quickly while others – like Professor Stephen Hawking, who has personally endorsed Euan’s website – survive for many years.

Despite the shock of the diagnosis, Euan threw himself into living: climbing munros, travelling the world, skydiving and bungee jumping, while dabbling in alternative therapies which he hoped might keep the condition at bay.

No longer able to continue working, he married his girlfriend, Liz, moved back home to Edinburgh and settled into being a dad with first son Finlay, now nine, and then Alec, seven. Incredibly, his own father, Donald MacDonald, MBE, co-founder of the City Inn hotel chain, gifted more than £1 million to launch the Edinburgh University neurological research centre that bears his son’s name.

Now while Euan’s body has been gradually weakened by MND, his mind is as bright as ever – as is his enduring appetite for enjoying life.

“Euan is struggling more now he’s on a ventilator,” says Kiki. “Life is a bit more challenging for him. However, he is very determined and still wants to go out to watch the football and the rugby and go to concerts. He loves the cinema and seeing his friends. Some places are great, but some are just not geared up for wheelchairs at all. Finding out where to go can be quite hard.”

Such as one Glasgow concert venue.

“The worst was a well-known venue in Glasgow that had sold me accessible tickets,” writes Euan. “When myself and my carer arrived, the manager offered to carry me up the stairs. When I politely refused, I was offered £200 to go away.

“Some of my best experiences have been the most surprising, such as the T in the Park festival and some of the venues in Edinburgh that you think will be terrible as they are in old buildings but you find that although the physical accessibility isn’t great the staff more than make up for it.

“Rewarding these types of venues is another reason behind Euan’s Guide.”

According to Kiki, the website is not only giving Euan something positive to focus on, it should help make life better for millions affected by disability around the country.

“Euan’s loving doing the website and it’s a lovely thing to do for disabled people, their family and friends, because it means they can go out more and live a more normal life,” adds Kiki.

“Even with a disability, people want to enjoy things that others just take for granted, like going for a coffee and being spontaneous. There are 11 million people in the UK with a disability, not all in wheelchairs. However, it’s still a huge amount of the population. And with them are all the family and friends who are affected, too.

“Life is hard for them and it’s harder when they try to do something like visit a new place and find they can’t get in,” she continues.

“Our hope is that this will help.”

n Visit Euan’s Guide at www.euansguide.com.