A 37-year-old whose head turned 180 degrees to face backwards due to brain trauma has thanked the charity who helped her get her first good night’s sleep in six years.
Sarah Coughlin, from Fazakerley, Liverpool, suffered a head injury in 2014 while working as a teaching assistant.
At first, there didn’t seem to be much wrong other than a headache that persisted through the week, but five days after the injury, when Sarah woke up late and rushed into her car, she realised her head had twisted 180 degrees overnight, and she was staring at her rearview window.
She said: “I could feel this searing pain through my shoulders and my back.
“I was wondering why my windscreen had black lines across it until I realised I was looking out of my back window.
“It was quite difficult to turn my head back around and keep there, but after a while, I managed it, though the pain did not go away.
“I thought I had just slept funny, and once I had properly woken up the sore neck would probably calm down. But when I got to work, I still felt awful.
“I went to A&E every week for three months because the pain wouldn’t go away, and I was still getting neck spasms.
“I was told it could have been a slipped disc, a muscle injury or having slept awkwardly. It changed each time.
“I was in agony constantly, but I still wasn’t diagnosed for at least another two years.”
At first, only Sarah’s neck and walking were affected. Still, over the course of a year, she developed spasms, optical neuralgia, pressure on the occipital nerve which runs through the neck up into the scalp, causing tremors, fits, paralysis and fatigue.
Eventually, she was diagnosed with dystonia – a condition which causes involuntary muscle spasms which is what had made her head rotate.
Doctors also told her she had a Functional Neurological Disorder (FND), the name given for a variety of medically unexplained neurological symptoms which appear to be caused by problems in the nervous system but which are not caused by a physical disease.
Sarah’s conditions changed her life; she could no longer drive, do the job she loved or take part in the same social activities as before, lost touch with many of her friends and hardly left the house as she was scared of people staring at her and judging her for the way she walked and moved.
The 37-year-old said: “I used to be quite fiercely independent – so to go from doing so much to not being able to do anything was the hardest transition.
“I felt a real sense of loss for the life I had when I was first diagnosed.”
In 2017, Sarah discovered The Brain Charity, a national charity headquartered in Liverpool city centre which provides practical help, counselling and social activities for people with all forms of a neurological condition.
She made new friends by joining the charity’s craft club and received help getting carers allowance for her partner John and with finding a new home as she could not use stairs safely anymore.
One night in Autumn 2019, John woke up to find she had turned blue and stopped breathing as a spasm had caused Sarah’s neck to contort, closing her throat and airways.
The only solution was a specialist bed which cost £10,000, so The Brain Charity helped Sarah launch an appeal to raise the money in November 2019 and assisted her to apply for grant funding.
Earlier this year, Sarah finally got the bed she so desperately needed, which uses deep massage cyclo-therapy to improve circulation and reduce her symptoms.
She is now supporting The Brain Charity’s #Sixmas appeal to raise £6,000 this December to support the 1 in 6 people with neurological conditions.
She said: “There are lots of things I can’t do anymore, but The Brain Charity has freed me from staring at four walls.
“I am supporting the Sixmas campaign because The Brain Charity helped me achieve goals that without them, I wouldn’t have been able to do.
“It seems obvious, but the more money people donate, the more people the charity can give the vital support I found so important.
“I want other people to have that place that is safe and secure, in an environment with people who have had similar experiences.
“The Brain Charity has given me such incredible support, and I’m so grateful for it.”
This year, The Brain Charity has faced a 70% surge in referrals due to Covid-19, despite many fundraising events being cancelled.
The organisation is asking people from all over the UK to organise and participate in a sponsored virtual or covid-safe activity event themed around the number six, or pledge to donate £6 a month.
Tui Benjamin, head of communications and fundraising at The Brain Charity, said:
“There are more than 600 different neurological conditions in existence, including stroke, brain injury, dementia and many much rarer ones too.
“We are the only charity in the UK to be here for every single one of them, as we have been for the last 26 years.
“2020 has been an unprecedented year for everyone; and, as has been the case for many charities, we’ve been unable to engage in public fundraising events and activities in the same way we usually would.
“But at the same time, demand for our services has rocketed like never before.
“One in six people have a neurological condition, and more than ever need the life-changing support we provide.
“That’s why, this December, we are calling on anyone affected by a neurological condition in some way – most people will know someone living with one – to support our #Sixmas appeal.”
Supporters and fundraisers can shout about their donation or fundraising on social media using the hashtags #Sixmas, #ShareWithSix and #SupportingThe1in6 before nominating six friends to do the same.
Make a donation: www.thebraincharity.org.uk/sixmas.
Sign up as a fundraiser: www.thebraincharity.org.uk/fundraise