Wednesday, May 5, 2010

How I beat a rare brain bug but then had to learn to walk and talk again

A YOUNG woman has learned to walk and talk again after being struck down by a rare brain disease.
Heather West battled for her life and spent six months in hospital after a bout of flu led to an illness so rare it affects only eight in a million people each year.
A year ago, she was confined to a hospital bed and only able to communicate by wiggling her finger.
The 27-year-old has made an amazing recovery and has signed up for Sunday's Race For Life, in aid of Cancer Research UK.

Heather, of Ettrick Drive, Sinfin, said: "Walking the circuit will be an achievement and I hope it will inspire people."
Her dad, Malcolm, said: "I'm very proud. This time last year Heather had to be hoisted out of bed and could barely feed herself."
Mum Julia described it as "like trying to wake up from a nightmare".
Waiting in hospital for the results of their daughter's brain scan, Malcolm and Julia looked on helplessly as Heather lost the ability to walk and talk within the space of just a few hours.
She had woken in the morning able to move about and communicate, but by lunchtime could not even swallow.
One of the last things she said was to tell her work she would not be in that day.
By the time the test results came through she was oblivious to the world around her.
Medics told Malcolm and Julia their daughter had damage to three areas of her brain which they would attempt to treat with heavy doses of drugs.
But they warned that she could die.
Julia, 50, of Ettrick Drive, Sinfin, said: "We couldn't believe the speed at which she got that poorly.
"She stopped talking in the morning and by lunchtime she couldn't walk or swallow.
"We were absolutely gobsmacked when they told us what was wrong. I kept describing it to people as like trying to wake up from a nightmare."
Heather had the rare brain disease acute disseminated encephalomyelitis – which is usually triggered by a viral infection and affects just eight in a million people per year.
Her diagnosis in February last year was the start of a six-month battle towards recovery.
During that time, she went from being unable to breathe by herself to getting out of her wheelchair and walking through the door of her home.
It all began with a bout of flu in December 2008.
Heather had been in good health throughout her life and appeared to have recovered from the flu, but in February she started suffering with migraines and double vision and was unsteady on her feet.
She went to her GP, who suspected it could be vertigo and gave her medication.
But when her condition failed to improve after about 10 days, Malcolm took her to casualty at the former Derbyshire Royal Infirmary.
Malcolm, 49, a laboratory manager at Burton's Queen's Hospital, said: "Because she's always been healthy she clearly wasn't right.
"I work in the NHS and alarm bells were ringing."
Heather was given a scan which did not detect any problems, so she was sent home with a follow-up appointment.
But the next day her speech slowed and she had slight difficulties walking.
The following morning, Malcolm and Julia thought she had suffered a stroke because the left side of her face had dropped.
They rushed her back to hospital and she was admitted immediately.
Because it was a Sunday, she had to wait until the following day to have a brain scan, which is when she was diagnosed.
She was transferred to Nottingham's Queen's Medical Centre, where she spent a week on a medical ward before her condition got even worse and she went into intensive care.
Julia and Malcolm took time off work and their son, David, travelled from his home in Surrey to be with them.
Malcolm said: "We started taking each day as it came. That was all we could do."
The family fell into a pattern of living off ready meals and spending visiting hours at the hospital, where they would sit and read to Heather in the hope she could still hear.
Malcolm completed all seven books of the Chronicles of Narnia and got halfway through the Harry Potter series.
Julia, who works in intensive care at Royal Derby Hospital, said: "Maybe our medical backgrounds helped us cope.
"I'd only been working in intensive care for a year and I kept saying what a time to have taken on that job. It helped because we weren't as fazed about everything."
Four weeks into Heather's hospital stay, she was given a second brain scan which showed that the damage had got worse.
Malcolm and Julia had not been prepared for this news, as they had believed Heather was improving because she had started moving a finger.
Despite the bad news of the scan, soon afterwards the improvements were definite and marked.
Heather started to breathe a bit on her own and her eyes, which had been looking in different directions, started to get better.
Malcolm said: "It had been horrible because one eye was looking one way and the other another, so it was as though no-one was looking back at me.
"When she started to improve we would see new things every day.
"Just seeing her toes wiggle was one of the biggest moments, because I knew that if they were moving then there was a good chance that the rest of her body, between her feet and her brain, had a good chance of getting better."
Heather left intensive care after six weeks and then spent the next three months on a ward for brain patients at Queen's Medical Centre.
Her rapid improvement continued, such as communicating by raising her finger for "yes" and curling it down for "no".
Malcolm and Julia do not remember some of the big moments in their daughter's recovery, such as the first time she spoke.
Malcolm said: "There weren't so many 'eureka' moments. It was more gradual.
"But it was quick enough that it felt like watching a child grow up at high speed.
"She went through the naughty phases that children go through – I'd tell her to suck a lolly and she'd bite it straightaway.
"She ripped her feeding tube out three times."
The first thing Heather remembers is her birthday, April 16, nearly two months after she was admitted to hospital.
She said: "I remember presents and cards and people visiting. And I had fruit juice on a sponge because I wasn't swallowing."
As she got better, she began having speech therapy to retrain her damaged brain to control the muscles in her mouth and tongue.
Heather said: "I remember the speech therapist asking if I could say 'banana' because 'b' was a difficult letter and I said 'nanas and custard'."
She was determined to get well as quickly as possible and, after four months in hospital, was weaned off much of her medication and moved to Royal Derby Hospital for intensive rehabilitation.
Malcolm said: "She was always determined and that was what helped her through.
"I can't imagine what it must have been like for her to come round in a hospital bed and find nothing in her body was working."
Heather was told that once she could walk again she could leave hospital.
She was so determined that she managed to do so in almost half the 12 weeks predicted, and was finally discharged on August 26 last year, six months after she was first taken into hospital.
Malcolm said: "We put ramps in place for her at home so we could bring her inside in a wheelchair.
"But she came home and walked straight through the door."
She still had a lot of recovering to do once she got home but her family agree that being without the care of hospital staff forced her to become more independent.
She has improved so much she is now able to lead a fairly regular life.
She still gets very tired but is able to drive again and, two months ago, returned to work as a credit controller in Burton.
Malcolm said: "It's changed our outlook on life in terms of what's important.
"We were burgled last week and they took a few things like a digital camera, but it's only stuff, it doesn't matter."
Julia said the experience had made her a better nurse.
She said: "I've always been very aware of patients' families and, although I've always tried to empathise, I believe I really can now.
"But when I see young people in intensive care I think back a bit. It's a bit of a flashback."
The family has thanked everyone who helped care for their daughter and they are now looking forward to their future together.
Malcolm said: "It's about making the most of the time you're here."

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