'My tics don't happen when I'm playing music'

"When I'm playing the music, my mind's reading the music. I'm playing, so my tics don't happen."

Helen Whittle, 37, has functional neurological disorder (FND), which affects the nervous system and can lead to life-changing symptoms.

She was diagnosed aged 32 after her "uncontrollable tics" got to the point where "they'd throw me off a chair".

Ms Whittle, from Carrington in Nottingham, is musical director of a concert on Friday at Nottingham Trent University (NTU), which includes performers who have FND and will raise awareness and money for charity.

Ms Whittle said she was diagnosed with FND while studying photography at university.

She said: "I went into my second year of university knowing that I had FND.

"And that's when I started to really come to terms with what I had and started to control my physical symptoms, as well as my more internalised symptoms."

She added that "no two days are the same" when living with FND and that doing activities that a lot of people would consider to be normal can leave her bed-bound the day after.

Ms Whittle got involved with support charity FND Dimensions while studying at university and stressed the importance of having a "community of people who are going through almost the exact same thing" as her.

She said: "No two people with FND are exactly the same, because there's such a wide range of symptoms.

"But they all are going through the same thing, that is trying to navigate a world that wasn't quite made for us."

Ms Whittle said she chose to give up a job doing IT for the East Midlands Ambulance Service (EMAS) which she "loved" due to the condition.

"I had to stop because I was getting to 11 o'clock in the morning and I couldn't carry on," she added.

"My fatigue levels would just go through the roof."

She has said she also likes horse riding, but can only manage half an hour a week.

Ms Whittle added: "I'm lucky enough that I'm also a musician that I could turn around, go back to music because it's a lot easier.

"It provides me some respite from my symptoms and because it's something to do with the distraction technique in the brain.

"I don't tic when I'm physically playing, so it gives me some form of respite."

FND Dimensions has collaborated with NTU Music to put on the concert at University Hall, which starts at 19:00 GMT on Friday and is £10 to enter.

Ms Whittle added: "The overall purpose is to include those with FND to come and perform, and it may not be perfect.

"It may not be the best thing ever, but even though they have FND, they're still there and they're still doing it."

Steve Webster, 55, has FND and is the CEO and founder of FND Dimensions.

He said he was in and out of hospital between 2006 and 2012 after being diagnosed, and the charity built up as he provided one-to-one support for others with FND who were isolated by the condition.

Speaking about the concert, Mr Webster, from West Hallam in Derbyshire, said: "We're getting across a very strong message in a creative way and in a different way that's not been done before, as far as we know.

"For it to take place in Nottingham on Friday evening is something we're so looking forward to. So much work has gone into it."

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