Eamonn goes to town

When retired library worker Eamonn Gray received his invitation to October's East Regional Conference he had one of those "lightbulb" moments. What if he took the mobility scooter he uses because of his Kennedy's Disease and headed up to London unaccompanied? How easy would it be for him to get around and how much fun would it be?

"I thought I've got the Friday in London before the conference, let's do something, let's just see how accessible London can be as an independent person. I'd been up to London with my wife but this was as a solo traveller...a person who doesn't want to lose their independence," said Eamonn.

Research was the key element to a successful trip, although the kindness and co-operation of transport staff and the public played their part as Eamonn got to London in his own converted vehicle and then took himself off to explore via the capital's public transport system.

A member of the Colchester and North Essex group, Eamonn received his Kennedy's diagnosis in early 2012 and has lost muscle function in his arms and legs to the extent that he is safer on his mobility scooter than trying to use a walker. Difficulty with speaking clearly and shortness of breath are further challenges.

Eamonn was keen to go to the conference to keep up with developments at the MND Association and decided that, even though his wife was away at the time of the conference, he was determined to attend. He figured that once he was in London he might as well get out and about.

"I'd spent some time working in London. I'd seen the Emirates Airline (cable car) and that started outside the hotel and I thought, 'Hmmm, I've never done that before, that's interesting'. So I did my research on that for accessibility and then I thought it would be quite interesting to see the Shard," he said.

The experience was surprisingly positive for Eamonn.

"It was absolutely incredibly easy, people were so attentive, they made sure that I had the time that I needed. Signage was pretty good for lifts and things like that. I was quite surprised actually, you always hear the negatives but never the positives. The infrastructure was there but I would say you have to do your research in advance."

The internet and official websites were the first resources Eamonn explored but then social media came up with some crucial advice too.

"There are more resources, things like YouTube. People will post things. That gives you a good indication of what you may come up against," he said.

Having a plan B or an idea of what to do if things go wrong is also important, says Eamonn, explaining that he always carried a personal call alarm and mobile phone and kept the breakdown insurance up to date on his scooter.

And while an unescorted journey might not be on the cards for everyone, London has the infrastructure to make a trip with a carer possible.

"For a lot of people with MND this could be impossible but if you feel that you have got this independence...and you have the right equipment, do your research don't be too ambitious too quickly and use that independence to give you something to do," says Eamonn, who is planning a trip with his wife to a Christmas market in France.

"If you have a carer with you, don't feel that it can't be done. The lesson for me personally was the sense of achievement that I can broaden my own horizons, independently. And also from my own personal point of view, that if I decide to go somewhere with my wife somewhere, that yes, it can be done."

Words by Keiron Henderson - Volunteer writer

Pictured: Eamonn at The Shard.


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