Call our Helpline: 0808 808 1000

Patient and carer stories

Stories of people who have experienced a neurological problem first hand, or have cared for someone with a condition

Are you looking for someone who has similar experiences to you?

Perhaps a loved one has a neurological condition and you are struggling to understand what it feels like. Perhaps you're wanting to read why people used our services or got involved with our charity. These stories are as individual as the people who tell them. We hope you will find something here that helps you.

Jump to stories by condition

ADEM (acute disseminated encephalomyelitis)
Back and neck pain
Brain tumour
Chiari malformations
Dizziness and balance problems
Head injury
IIH (idiopathic intracranial hypertension)
Spinal cord injury
Spinal myoclonus
Subarachnoid haemorrhage and brain aneurysm
Stroke
Transverse myelitis

Read about Janice's experience with acute disseminated encephalomyelitis (ADEM)

ADEM

Janice's story

Janice's story

Janice was diagnosed with acute disseminated encephalomyelitis, a condition that involves inflammation and damage in the brain and spinal cord

Read about people's experiences with back and neck pain

Back and neck pain

David's story

David's story

"I woke up in terrible back pain, the start of a long journey which eventually culminated in lower back surgery some 15 years later..."

Tony's story

Tony's story

Tony started having back problems in 2009. He used his experience to give something back to the Brain & Spine Foundation by participating in the Brainiac Big Swim in 2015

Read about people's experiences with brain tumours

Brain tumour

Jo's story

Jo's story

"It was such a shock and all I could think about were my two boys, who were just 1 and 3 years old at the time. I lay awake all night worrying that I may leave them without a mother."

Sandie's story

Sandie's story

"I had a tumour the size of a satsuma sitting on the meninges at the back of my brain – scared didn’t even come near the feelings I had..."

Gavin's story

Gavin's story

"I suffered severe migraines for 2 and a half years before eventually being diagnosed with a brain tumour. My GP had repeatedly advised me to take painkillers for the migraines rather than investigating their cause..."

Read about people's experiences with Chiari malformations and syringomyelia

Chiari malformations

Jamie's story

Jamie's story

"I thought to myself there's two roads I can choose here; I can lie down to it and become a statistic of an illness that can't be cured; or I can try to get on the best I can and prove the predictions wrong. So I did."

Blake's story

Blake's story

Blake's story went viral in 2014 as one of the first competitive fitness models to enter and win a national fitness competition with an ostomy. He was later diagnosed with a Chiari malformation. Here he shares his experience

Holly's story

Holly's story

"Imagine at 19 years old being told that your brain is actually the source of all your problems. I thought I had weeks to live but I never wished I hadn’t got the scan..."

Read about people's experiences with dizziness and balance problems

Dizziness and balance problems

Gillian

Gillian

Gillian's dizziness started following a bout of flu. In this article she describes how it feels to be dizzy, how her condition was tested and treated, and what advice she would give to others in her position.

Read about people's experiences with brain aneurysms and subarachnoid haemorrhage

Subarachnoid haemorrhage and brain aneurysm

Julie C's story

Julie C's story

"Peace and tranquillity helped me make good progress. When I saw that a local artist I liked was starting an art class I jumped at the chance to join."

Lauren's story

Lauren's story

"When I was sent home from hospital in 2004 following my subarachnoid haemorrhage, my consultant handed me a booklet from the Brain & Spine Foundation, telling me that they were good to get in touch with for support."

Julie F's story

Julie F's story

"I heard a bang and thought someone had been shot in the street (I found out later that sound was a haemorrhage in my brain). My little boy dialled 999 and saved my life..."

Kavita's story

Kavita's story

Kavita Basi, one of our Community Ambassadors, filmed her journey of recovery following a subarachnoid haemorrhage. Watch her story.

Read about people's experiences with head injury

Head injury

Max's story

Max's story

"I hope to persuade young people, men in particular, that yoga can transform lives in so many ways and that it may even help save your life!" This is Max’s story of how yoga helped his remarkable recovery from a traumatic brain injury.