June's Story
I am writing this on behalf of my Mum, June. My Mum has always been reasonably healthy with just the
usual complaints that most people get through life, there was nothing remarkable and nothing to worry
about.
To go back a bit in time I should explain that my Dad died in March 2005, it was very sudden. I was away
for the weekend and had left my daughter, Kimberley, who was then 8 years old with my Mum and Dad.
They were all having tea and my Dad had a massive and fatal heart attack. He did not ask for help or
speak to my Mum or his grand-daughter. This must have been a terrible shock to my Mum, they had been
married for well over 40 years and he was my Mum’s rock. At the time my Mum seemed to cope well and
a lot better than anyone ever thought possible, but I am not so sure that the shock was storing itself up
for what happened in the future. I expect the medical profession would dispute this but what happened
almost 2 years later was the most odd and worrying time of my life. I say my life, because my Mum cannot
remember much of what happened at that time, and to this day does not remember the day my Dad died
or his funeral.
Just before Christmas 2006 I noticed that my Mum couldn’t concentrate and was confused a lot of the
time. I would take her shopping for presents and she couldn’t remember what she had bought for the
family and who was supposed to receive which gift. Christmas was difficult and it was almost as though
Mum was drugged. Her mind was sluggish and she seemed tired all the time. She also asked me on
several occasions where my Dad was and then felt very silly when I had to gently remind her that he was
no longer here. I took her backwards and forwards to the doctors and she was diagnosed as having a
urine infection. This does make a person confused but I felt there was more. Her memory was getting
worse and she seemed unable to cope with some daily, routine tasks. I was worried that perhaps she had
had a mini stroke or it was the onset of some sort of dementia. One day she called me before work and
said that she didn’t feel well. I popped in on the way to the office and found that she had massive bruising
on her face and a cut on her cheek. She had not even realised that she had fallen out of bed and hit her
face on the bedside cupboard door. I asked for a doctor to come and he agreed that Mum was confused
and definitely not right. He arranged for her to be seen at the Rapid Access Centre of our local hospital 2
days later. She was subjected to a barrage of tests, scans and questions. Mum didn’t know what the date
was, who was Prime Minister and barely where she lived, but all they could find was slight pneumonia in
one lung. She was discharged from hospital with some strong antibiotics. She should have come to stay
with me, but she didn’t want to and was by this time getting quite aggressive with me. I took her home
and went back later that evening with my daughter to see if she had taken the tablets. By this time, Mum
was in her own world, she was convinced that I lived back at home. There was even a sandwich and cup
of tea on the side that she had made for me. She had changed and was dressed up to go to the club with
my Dad. I tried to gently explain once again that Dad wasn’t here anymore, but she argued and said I was
lying and that she had had lunch with him.
By the next day, she was even worse and I asked if my Auntie Jean, my Dad’s sister, could come down from
Northampton to help. I am so glad that she arrived late on the Thursday night as I would never have coped
without her on Friday. My Mum’s neighbour called to say that my Mum was sitting out on the doorstep at
7am in the morning and she wouldn’t go back in as there were lots of people in the house. By this time
she was hallucinating badly and was very active, it was difficult to get her to sit still. She saw everything
and everyone that day, from relatives that died over 30 years ago to the little dog that we had when I was
a child. I eventually got her to St. Peter’s Hospital in Chertsey. Once again there were many tests and I
had to keep going over old ground with every doctor we saw. It took us over 11 hours to finally get her
admitted and then it was to the psychiatric unit. Everyone knew this was the wrong place but it had to be
somewhere secure. Mum stayed there for a couple of weeks. She didn’t really know anyone that much
and couldn’t remember a thing of what had happened. Fortunately she was seen by a neurologist who had
her admitted to St. George’s in Tooting. It was hard to see her there and very sad, she just kept asking
me why her Mum wasn’t coming to see her and where everyone was. Each time I visited we went over the
same ground. After various tests, MRI scans and a lumbar puncture they diagnosed auto immune limbic
encephalitis - a condition that is quite rare and difficult to treat. She was eventually given a course of
immunoglobulin by drip, an expensive but effective treatment. Basically my Mum’s immune system was
raging against her own body.
She was moved back to Chertsey and eventually discharged in May 2007. By her birthday on 3rd June
we had organised a party at her home for her 69th birthday. She had a good day, but this year she can’t
remember much of that day. We have just had another party for her 70th and she is much improved but
unfortunately not back to full health. Lots of people say to her that we all forget things and details from
time to time and that is true, but it’s nothing like what Mum has to suffer and she gets very frustrated.
She has bouts of being depressed and sad, then will be quite upbeat for a while but always her memory
fails her once an event has been passed for a few weeks. I am not sure that her memory or the feelings
that she has will ever return to normal. Sometimes she appears to suffer panic attacks and has weird and
random thoughts and dreams.
Mum is being treated by a neurologist at Frimley Park Hospital. She has been on a course of steroids and
this has perhaps helped a little but unfortunately made her put on more weight which has not had a good
effect on her general health. She is now being weaned off the steroids. She also takes an anti-epileptic
drug as she suffered many fits during her illness. I am optimistic that Mum is on the mend, but it is a slow
process. I have written this story in the hope that there might be other limbic encephalitis sufferers that
will understand how she feels, or perhaps it will make them feel not so isolated. Instead of presents for
my Mum’s birthday we asked for donations and we have pleasure in being able to enclose cheques to the
value of £400 for the Encephalitis Society. Hopefully this money can go in some small way to helping with
your cause of helping patients around the country.
Dawn (June’s daughter)
Matthew's Story
I am writing my story because I hope it may help other people who experience such a life-threatening
illness or have a loved one who does. Ours began in January 2007 when my son then aged 14 fell ill, he
suffers from Asthma and had been off school with a chest infection. After about four days he gradually
began to get worse and I thought it was very strange for what seemed to be just a bad cough. He was
sleeping all day and all night and just making moaning noises, he couldn’t really understand what I was
saying to him, and in trying to describe his condition I would say it was like someone who had suffered a
stroke. He had a piercing stare which just didn’t change and he couldn’t understand what I was saying
to him.
He is over 6ft and I was having to help him to the toilet, it was then that I knew something was seriously
wrong, he would never let me do that normally! On the Friday of that week I rang our local Dr, who we had
been with for twenty years or more, she came out after surgery and gave him some tablets to put under
his tongue to stop him feeling sick. In hindsight I should have been more assertive and insist that he
go to hospital to be checked but in that situation you believe the Dr. By that afternoon he had gradually
worsened and after a restless night waking at 5.30 am I decided to ring the NHS helpline. I now know
that I will not hesitate to ring emergency services, but as you do, you think you may be wasting their time
and they are needed elsewhere.
The paramedics came out and immediately admitted him to A&E, after trying to get him down our stairs
(being so tall!). At this point I think I went into shock mode and just let the professionals deal with him,
my daughter and I went in the ambulance and it all felt a dream. I couldn’t understand how someone
could go from normality to being asleep all the time. To cut my story short, Matt spent a week in a coma
and three weeks in the children’s hospital. The week he was in a coma was the worst time of my life and
I prayed for him to wake up even though I didn’t know what he would be like and what side effects he
would experience. The day came though when he opened his eyes and it was wonderful, we were all
so grateful. He took a while to eat and drink but the hospital staff were amazing and I can’t praise them
enough. I think one thing that got Matt through was his wonderful sense of humour.
I am delighted to say that he is now a lot better and has just taken his GCSE’s which I am so proud of. A
year and a half ago I would never have thought this episode in my life would occur but I am thankful for his
recovery as I realise that there are so many who don’t and suffer for many years to come. Matt had ADEM
and a very rare virus we were told. The Encephalitis Society helped me so much just in the information
I received and I still like to read the newsletters. I am only sorry I cannot donate money as I am not in a
position to do so, but if I won the lottery, that is where I would donate because without these societies,
people would be very lost and lonely with their families. I hope my story helps other people in knowing
that there are others in the same situation.
Joanna (Matthew’s Mum)
Anna's Story
Anna has now been in the Wessex Neurological Centre, Southampton General Hospital
for nearly two years. She is 28 years old next month and this is her third episode
of encephalitis - cause unknown, but because of the sparse positive results from
the literally hundreds of tests sent all over the world, that it is as a result
of a breakdown in her auto immune system. Sadly she is a one off.
This episode started whilst she was at work and found she was unable to speak properly.
Over the next three days she lost all words - speaking, writing and texting, but
other than that was fine. She was admitted to the medical neurological ward where
she quickly became manic and totally uncontrollable, stopped drinking and eating
and became incontinent. She went to have a MRI scan under general anaesthetic and
lapsed into a coma. ITU then became our home for the next few months, on life support
and having continual massive seizures. No amount of drugs could control these properly
and we were warned that all they could do was try and keep her safe. Infection followed
infection and test followed test. She eventually made it into HDU and then back
on to the ward but we made several more trips down to ITU over the next year. She
had a tracheotomy for nearly all that time and even when showing signs of consciousness
was still receiving oxygen. During this first year she had IMG treatment (used to
try and block the 'bad cells') and fifteen plasma exchanges trying to clean her
blood. Sadly these had to be undertaken at a different hospital so she was 'blue
lighted' by ambulance plus nurse, received her treatment and 'blue lighted' back
again. These trips were very risky as she was so ill but we had to try and she battled
on. Sadly we don't think that the treatment helped much but we tried. Over the next
few months Anna gradually became more responsive, still fed by tube but breathing
on her own and with fewer infections. She still has continuous seizure activity,
but it is controlled much better with a massive cocktail of drugs.
Last September they tried some chemotherapy just to see if could help with any inflammation
in the brain, but this made her extremely ill again so it has not been repeated.
She is now also being treated by the rheumatologists who are trying a different
drug which is hopefully helping her immune system. Anna has at last made it into
the rehabilitation unit, with the occasional trip back on to the ward when she becomes
unwell again. The latest problem is osteomyelitis of the spine!! She now has a degree
of spinal collapse and is still undergoing a very long course of strong antibiotics
- but once again is responding well.
Anna is the most amazing, determined young lady. She can now say a few words, and
her understanding of the world around her is improving. She can walk well, but has
some problems with her right side which is often twitching in a very unpleasant
way and she rarely uses her right hand although she can. She is learning to communicate
with gestures as well as words so we can sometimes understand very well indeed what
she does or does not want!! She is starting to eat but it is very spasmodic so is
still fed by peg tube and this is also still used for all her drugs. Accordingly
her weight is up and down, mainly down! Her sense of humour is still very much intact
and her happy easygoing nature shines through. Everyone loves her.
Her care and ours has been superb. We could never thank everyone enough for ' keeping
her safe'. It has been a very long haul and this only covers a tiny amount of what
the doctors, Anna and we have been through. A roller coaster ride all the way and
it is ongoing. For this reason we have set up a charity called 'Anna's Room'. Initially
we will provide portable sensory equipment for each ward on the unit and ultimately
when funds and a room become available, we will equip and maintain a sensory room
to be called 'Anna's Room'. Sensory equipment helps whilst in a coma with touch
and smell, whilst recovering to calm and ease stress and to stimulate all the senses.
Hopefully a lot of people will benefit in the future.
Who knows what the future holds for Anna but we keep our fingers crossed that a
breakthrough may become available to help her and we know that all her friends,
family and the wonderful nurses and doctors will be there with her all the way.
Sue Gilchrist
Sarah's Story
I am the step-father of Sarah who was 17 years old when she had the first signs
of the illness. Sarah had a virus at first with headaches and weakness.
In the second week she attempted to get up from the settee where she was lying,
but as she put her left foot forward she fell over. I helped her up and told
her to get herself moving. Then she put her left side forward. This
time she fell into the fireplace. My girlfriend and I were astonished at what
had happened. We called a doctor and Sarah was taken straight into hospital.
The first month was distressing because the doctors were unsure of the diagnosis.
I became very worried and wanted to do more to help Sarah. I was looking up
books and attending a class at the hospital to see if there was more I could do.
Sarah had a brain biopsy which confirmed she had encephalitis. I would sit
and watch her have many bad attacks, pulling her hair and banging many times all
over the bed. At times I had to walk away and cry. It was only the marvellous
guidance and help of the nurses that got me through. They would sit with me
and talk about Sarah.
I had a good job, but I had to take at least two months off work. They were
very good to me. The management would always ring to ask questions about Sarah's
health. It was very hard to return to work. I was always aware there could
be a phone call from the hospital. During the three months Sarah was there I became
so worried that she would not make it that I often prayed at night. I must say I
have never believed in God but it did help, and of course it worked as Sarah got
better.
I had been with Sarah and her Mum, Brenda, for 11 years so I was well and truly
involved, so much so that I felt like her Dad. At times it was very emotional
for me. Brenda and I spent many evenings together, talking and looking at
books. It made our relationship very strong and we were able to build up strength
for the weeks and months ahead, looking after Sarah.
I think it is a terrible thing that, while at work you argue over pay and conditions
and you feel so wonderful that you have a job, but there are always people worse
off than you. It really hit me while Sarah was in hospital when I saw so many
young children suffering. It made me really think of how lucky some people
are and we should not forget those parents and children who are suffering today.
Two years on Sarah has improved. Her Mum continues to look after her and I am continuing
with my work.
Clare's father's Story
My father who is 70 years old, has cancer of the lymph nodes and multiple sclerosis.
Last year he contracted encephalitis. He would write this story himself but
he is out in the garden with his memories.
One day in August my father drove to Bournemouth Hospital in his slippers for his
weekly chemotherapy. My mother was upset because of the slippers and because
he seemed agitated. His oncologist immediately admitted him to an isolation room.
He had pneumonia and an extremely high temperature. He became anxious and
upset at any little sound in his room, the hum of the drip machine administering
his antibiotics, the whirl of the fan. He didn't want the blood tests because
his veins had collapsed, he didn't want the catheter or the plastic tube sticking
out of the bed for all to see. He didn't want the TV on or to listen to the
radio. He did not want to talk. He was not interested in our arrival
or in us putting on a brave face.
Five days later his temperature peaked and he had a fit, watched in horror by my
mother. The doctors were mystified. They gave him abundant tests –
lumbar punctures, X-rays, blood tests and brain scans. No diagnosis was forthcoming.
My father could not speak and did not recognise us. He lapsed into a coma.
The television was removed from his room, the fan stayed.
After another two days, my mother, brother and I were taken into a room and told
by the specialist that he was old, had cancer and now this. He advised us
that my father's final breaths would be in the isolation room. They gave him
hours to live. The only movement in his isolation room was his oscillating
fan.
Days passed. We sat, we thought, we cried, we talked, we laughed and we prayed.
More days passed. The nurses started turning him. We were ushered out
of the room each time his pad or nappy needed changing. A special airbed was
brought in. More days, more hospital smells.
Then, he suddenly opened his eyes. There was no recognition. He would not
eat and he could not move. Days passed and movement gradually came back.
He sipped on fluids. I would arrive with a smile and leave with a tear.
We watched him suffer and suffered with him. He seemed a stranger to me as
I seemed to him.
The month passed slowly. Still no sound came from his lips. I was greeted
each time with a frightened stare. He would grip the bars on his bed and look
around anxiously as if he were looking for an escape route. This was not my
father.
The specialist decided it was time to transfer him to the rehabilitation ward at
Christchurch. I was told for the first time that he had encephalitis and the prognosis
was bad. The transfer ambulance arrived ten minutes later.
Another fortnight came and went. My father received physiotherapy and speech
therapy. The speech therapist based her evaluation on whether my father could
pronounce the word, 'caterpillar'. He could not. When I arrived I read
the notes left on the end of the bed. I repeated the word to my father and
he would not repeat it. I told him the notes said he could not pronounce it but
I knew he could. The speech therapist arrived to collect her notes and I said
they were wrong, that my father could pronounce 'caterpillar'. She disagreed.
One of my most poignant memories of this time was when he lifted his head up high
and said clearly, 'caterpillar'. The therapist never came back. There
was hope and I had faith.
My mother visited all day, every day. She fed him, mashed his food and changed his
clothes. He still did not recognise us. Then, days after the caterpillar incident,
he turned to my mother and told her very slowly that he loved her.
We set about our own little rehabilitation programme, stimulating his mind.
We brought in a personal stereo and the old tapes he had loved. We showed
him photos. I asked him questions about his life with Mum. He did not
understand, he did not want to hear the questions and he did not know the answers.
He would close his eyes tight like a child, thinking that if he could not see us,
then we could not see him. I kept asking. At times he would answer, but in
a disjointed, strange language. He was in a fantasy world. He was grumpy,
angry, sad, happy, blissfully ignorant, confused or strangely apprehensive, all
within the same hour.
Another month passed and he arrived to a home he could not remember. My mother would
call me at work, in tears about how my father had ripped up all their bank statements,
thrown the pension books away, ordered taxis to take him to London or tried to cut
the wires on the TV speakers. My colleagues did not understand the turmoil.
I would joke about it, though inside I was crumbling. But I still had faith.
They say encephalitis can take a minimum of two years to overcome. My father
overcame his obstacles in nine months. He has changed, but then again, so
have I. At one time, what seems a lifetime ago, I prayed to have my old father
back. I think I was selfish. I love the things he says now, how he views
the world. I laugh instead of cry. He doesn't remember anything at all
of his stay in hospital. We tell him stories of his illness and he shakes
his head in disbelief.
The world can be a cruel place sometimes, but everyone has his own little sanctuary.
It's just a matter of finding it.
Faith
Faith consists in believing when it is beyond the power of reason to believe.
It is not enough that a thing be possible for it to be believed.
Voltaire 1694 -1778
Clare Chamberlain
Jean's Story
Jean had been fighting off a cold for a couple of weeks when she finally took to
her bed with a violent headache on Tuesday, December 12 1995. This was not
unusual as Jean did suffer with headaches. On Wednesday morning she was still
unwell and had a bilious attack. I suggested we send for the doctor but Jean
was adamant that she did not want one. I checked for signs of meningitis but
there were none. My daughter stayed with her and she slept most of the day.
On Thursday she was still not well but seemed slightly improved. However,
when asked some questions she did not know her name, address or the names of her
family.
I rang the emergency doctor. He examined Jean thoroughly, diagnosed suspected encephalitis
and said there was no need to worry, that she would be in hospital for three or
four days and home for Christmas.
I took her into hospital on Thursday 14 December. The next day when I visited
her, she had been for an X-ray but was talking nonsense and didn't recognise the
family. The doctor said she hadn't got encephalitis but he didn't know what it was.
On Saturday afternoon Jean was not good and had stopped talking. We were very concerned.
A lumbar puncture was taken which didn't show anything.
On Sunday morning Jean was still sleeping when the hospital called at 12:30.
They asked me to go in straight away. The curtains around her bed were drawn and
she was being given a cooling bath. Her temperature was very high and they
couldn't get it down. The scene was frightening. She had two drips, fans and a temperature
monitor connected to her.
The doctor called us into his office. He told me my wife was in a coma and was not
responding to treatment and that he thought she had encephalitis. We were
shattered. I stayed by her bed until Tuesday night, talking to her and playing music.
Finally, her temperature began to fall. She began to improve but at first she couldn't
talk, had difficulty swallowing and didn't know anyone. After a five-week stay in
hospital she didn't recognise her house or town.
Jean is now attending a day care centre three days a week and is making good progress.
Both her long and short-term memory are poor but she does surprise us from time
to time. She finds it difficult to remember people's names and her identification
of objects is very poor. She substitutes names for things and when we correct her
she gets most annoyed. The amazing thing is that as soon as she arrived home
she could use the washing machine, cooker, and video and only got one digit wrong
on the burglar alarm code. She can talk properly and walk and is physically
fit and healthy. She is now eating and drinking properly and is on no medication.
Reading other people's letters, I realise that we have been lucky that Jean has
come out of this illness as well as she is. I hope this letter will give hope
to others and my advice is never to give up hope and don't despair. I did,
and fortunately I was proved wrong.
Frank Melboume
Last modified: July 2010