'If MS takes my voice, it will live on in my book'

A nurse who is losing her voice due to a degenerative brain and spinal condition has written a book to continue her legacy of caring for people and families affected by dementia.

Julia Taylor, who works with dementia patients and their families at the Woodside Resource Centre in Middlesbrough, was diagnosed with multiple sclerosis (MS) when she was 33 and suffers from pain and fatigue.

The 53-year-old from North Ormesby has now self-published a children's book - titled "Nana Mackie's Magical Memories: A Dementia Adventure" - because she said talking was becoming more difficult as her MS progressed.

She said: "If my speech fades, I hope this book keeps those conversations going."

Taylor started working in care when she was 17 and started her first job as an assistant in a local care home.

At 24, she qualified as a nurse and went on to develop a model for understanding challenging behaviour in dementia patients.

"A lot of people on my dad's side of the family had dementia, so I grew up around it," she said.

"I think I was 10 when I decided I wanted to be a mental health nurse - it's a vocation and I absolutely love it."

However, at 33, Julia was diagnosed with MS.

The condition occurs when the immune system mistakenly attacks the central nervous system, causing damage which can manifest as symptoms including fatigue and loss of balance.

Although the condition is incurable, symptoms tend to get better and worse in cycles known as "flare-ups".

However, she later also developed trigeminal neuralgia - a condition affecting one of the nerves in the head which causes extreme pain.

Although she had an operation to help relieve this, she said the pain returned during her MS flare-ups, which now occur "two or three times a day or more".

This left her unable to talk for longer than around 20 to 30 minutes without the pain becoming too intense to continue, she said.

She previously delivered dementia training sessions, but had to reduce her workload to cope with her own illness.

"The day I realised I couldn't teach anymore, I was devastated - and that's the day I thought I would write a book," she said.

Julia said the book, which took three or four years to write, revolves around two children learning how to care for their grandmother with dementia.

She said it was aimed at children who have parents or grandparents of their own with memory loss.

"I've seen children playing outside at care homes and they say they're frightened, but they're missing out on vital time with their grandparents - or their parents, if they have young onset dementia," she said.

"I want them to see it as something they can help with, so every chapter is a lesson about dementia.

"I love my job and I never want to leave, but I know in my heart that I'll have done my best to help others when I have to step down - part of that has been writing this book."

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