Sarah at The Brain Charity in Liverpool

In 2014 while working as a teaching assistant, Sarah suffered a head injury which caused a serious brain trauma.

At first there didn’t seem to be much wrong other than a headache that persisted through the week.

Five days after the injury, Sarah woke up late and rushed out of her house.

When she sat in the driver’s seat of her car, she realised something was very wrong – her head had twisted 180 degrees and she was staring at her rear view window.

The 37-year-old 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 awkward. It changed each time.

“I was in agony constantly, but I still wasn’t diagnosed for at least another two years.”

Sarah and Jay

At first only Sarah’s neck and walking were affected, but 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. These are most prominent in her neck and shoulders, and this is what had caused her head to 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, and lost touch with many of her friends.

Before coming to The Brain Charity she felt isolated – she 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, from Fazakerley, 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.”

Struggling to cope with how isolated she felt, Sarah’s neurologist suggested she come along to The Brain Charity.

It took her nearly a year to pluck up the courage to drop in and when she turned up she was anxious but was instantly welcomed by staff members who sat down with her to have a cup of tea.

It wasn’t long before Sarah joined a variety of activities, starting with the craft club.

Sarah, on the right, enjoying an art class at The Brain Charity in Liverpool

She also received help getting carers allowance for her partner John and to be rehoused to a bungalow as she could not use stairs safely anymore.

Sarah said: “The Brain Charity has supported me through so many situations.

“They’ve helped me with applications that I could have done wrong and then never got the important help I’ve needed. It’s nice not to be on your own.

“Coming here has given me the chance to try new things.

“There’s lots of things I can’t do anymore but The Brain Charity has freed me from staring at four walls.”

Due to spasms that left her unable to breathe, most nights Sarah was getting no more than two hours sleep.

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 and close her throat.

It took John a lot of physical effort to lift Sarah’s head and open up her airways again.

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 month, Sarah finally got the bed she so desperately needed, which uses cyclo-therapy technology, effectively using deep massage to improve circulation and reduce symptom intensity.

Sarah's new medical bed

It can also help John sit her up and more comfortably reposition her head if she has spasms during the night.

Sarah said: “No one has £10,000 after they’ve lost their career, and it had been years since I’d had a proper night’s sleep.

“The first night after I got the bed, I slept for seven hours.

“It’s already made a huge difference to how my symptoms affect me.

“It’s been amazing and I’m so glad to have it. The Brain Charity has given me such incredible support and I’m so grateful for it.”