Ataxia and us

Naidex- our seminar!

Something a bit crazy happened a few months ago…. Dan and I were asked to give a talk at Naidex, for the charity Ataxia UK. 

For those who don’t know what I’m on about… 

Held at the NEC in Birmingham, Naidex is Europe’s most established trade, professional and public event dedicated to the care, rehabilitation and lifestyle of people with a disability or impairment. Naidex is a hub of innovation in the disability community, bringing the entire industry together under one roof for two unforgettable days. There are over 350 exhibitors and the event is visited by around 15,000 people. It’s pretty huge!

Steph Marley from the charity told us that they’d managed to secure a slot in one of the event’s seminar rooms this year… And apparently, they thought us pair of eejits would be good for the job! 

Of course, we agreed to the great opportunity, but we were both nervous to say the least! Along with Ataxia UK, we decided our topic would be dating and relationships with a disability. 

On the day…

On the run up to the event on Tuesday 26th March, we prepped as much as we could. On the day, our slot was at 3.30pm, so we had time to have a look around beforehand.

I also planned to visit the AccessAble stand. I’m a champion for AccessAble, which is an accessibility game-changer. They basically provide an online database with access information, so that people who need to know the accessibility of places they’re visiting can ‘know before they go’. They’ve surveyed 10,000s of venues across the UK and Ireland, including shops, pubs, restaurants, cinemas, theatres, railway stations, hotels, colleges, universities and hospitals… Shameless plug!

Anyway, we had a look round when we got there. The biggest names in the industry were there and the place was bustling (two years ago, my anxiety would never have coped with something like this!).

Our favourite bits were the INCREDIBLE fully wheelchair accessible motor homes, the all-terrain wheelchairs and the hand-controlled Lamborghini that was on show. 

The motor home has gone on our ‘ultimate dream list’, and Dan entered a competition to win an experience day in the Lamborghini. We can hope!

Tense about the talk…

About 15 minutes before our talk, we sat outside the food hall and had a drink and a snack (the food hall was handily at the same end of the NEC as our seminar room). The room was easily visible from where we were sat, and we were anxiously watching to see if people were turning up. And they weren’t… I was preparing for what might be the emptiest and most awkward seminar talk ever. About 5 minutes before we were ready to go in, people starting appearing; to our amazement, the room started filling up.

At 3.30pm, with both of us like deer in the headlights, we started the talk. We think it went ok…! It was such a huge relief when we finished and the responses from the people there made all the worrying worth it. It was a bit of an emotional rollercoaster, so it was lovely to unwind with Steph and Leanna (from Ataxia UK) and some of the other ambassadors in the hotel restaurant that evening.

Here’s the talk:

Reflecting on our first ever public speaking event…

I did wonder how we’d feel after a few days, when we’d had time to reflect on how it went.  Two days after Naidex, Dan and I were in the car on the way to the shop. We were chatting about stuff unrelated to Naidex, when Dan said something that made my heart drop out of my arse. 

He said

“It was weird seeing myself on video…because in my head, I’m not that disabled.”

Dan looked like he was welling up, and I certainly was.  He told me that he didn’t realise how jolty his movements looked to others, and how different his voice sounds now. 

Despite the fact that Dan seems to have come to terms with his condition, behind closed doors it’s not that straightforward. Because FA is degenerative, it’s a constant timeline with small changes cropping up every so often. Just as you’ve got used to one thing, something else crops up to deal with and adapt to. Watching the video of Naidex, it just hit Dan hard to see his reality from an outsiders perspective. Dan has still lived more of his life without the symptoms of FA, than he has with them. Although he can’t forget about ataxia because of the effects it has on his daily life, he can perhaps sometimes become distanced from it mentally, especially when he’s not had a bad day for a while. 

Even though Dan felt a bit odd after seeing the video from Naidex, we both mostly feel a real sense of personal achievement. Talking in front of an audience was nerve wracking and didn’t come naturally, but if it helps us to break down barriers and raise awareness of FA, we’ll happily do it again! 

Love,

Becky

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2 Comments

  1. Aimee says:

    Hi Becky and dan
    Love your articles
    Great reads!
    I suffer with FA me and my husband have been together since we was 19 both 31 now
    We got together when I was walking but very wobbly I am now a full time wheelchair user!
    We got married in September was best day ever would love to share photos with you both!
    I got diagnosed when I was 18 too dan and when you said when you watched yourself you didn’t realise you looked disabled I feel exactly the same I just thought I look normal hate hearing or seeing myself!
    Would love to chat more and show you both the best is yet to come xxx

  2. Becky270 says:

    Hi Aimee!
    Ah thank you so much, that’s so nice to know.
    And that is SO lovely to hear. Congratulations to you both! Ooh yes, I’d love to see the photos!
    Yes I think that’s what other people don’t realise about having FA. The changes and symptoms come after years of living without a disability. It’s not something that’s easy to adjust to. Thanks so much for your lovely message. Are you on Facebook? If so add us… we’re Head Over Wheels. Send us a message and we can chat more! X

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