The Encephalitis Society
action for support, awareness and research
Newsletter
No. 33 - Summer 2004
The first ten years are just the start...
H ANNI
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SA
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In October this year we celebrate 10 years of achievement. The Encephalitis Society is still the only organisation in the
world providing information and support to people affected by encephalitis. Over the last ten years we have provided
direct support to over 3,000 people affected by encephalitis and their families and carers. We have done this through a
telephone information line; developing a unique resource of information; organising meetings and providing a personalised
support service.
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In those ten years we have
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● Grown from a small volunteer support group to an organisation with 7 employees.
● Raised over three quarters of a million pounds for the charity’s work.
● Secured funding from the Community Fund and BBC Children in Need for both adult and family support workers, to
establish and develop its support service for all affected by encephalitis.
● Published a Guide to Encephalitis and a range of definitive Fact and Information sheets on the condition and its
consequences; and developed a commended website, averaging over 4000 hits per month, which is the top internet
source worldwide for information on encephalitis.
● Established the Encephalitis Resource Centre, as both the UK Headquarters of the Society and a centre of excellence
for provision of information about encephalitis.
● Raised greater awareness of encephalitis within the NHS; and contributed to the shaping of the National Service Framework
for long-term conditions which includes all neurological conditions.
● Developed effective links with a wide range of professionals concerned with the treatment and rehabilitation of those
affected by encephalitis; established its expert advisory Medical Panel; and organised the first International Conference
with an exclusive focus on encephalitis.
● Undertaken its own research into the Consequences of Encephalitis; and funded encephalitis-related research projects,
from genetics to disease outcome.
● Entered into active partnership with other organisations concerned with acquired brain injury including the British Society
for Rehabilitation Medicine, the Children’s Acquired Brain Injury Interest Group, and the UK Acquired Brain Injury Forum;
and participated in representative bodies such as the Neurological Alliance, the Long-term Medical Conditions Alliance,
and EURORDIS - the European Organisation for Rare Diseases.
Join the Celebration - Details are on the yellow insert pages.
The House of Commons Tea Party takes place on Tuesday 12 October. Tickets are £10 and we will send an invitation
to your MP too.
If you are unable to join us then wear your badge during the week - and ask you family and friends to do the same.
The Annual meeting this year will be followed by an Evening Celebration of Music, Poetry and Drama. The event
takes place in York on Saturday 6 November and discounted accommodation is available.
Contents 2 Focus on Funding
4 The Retreat info
Encephalitis 9Society
Newsletter
Carers
Issues - No. 33 Summer 2004
10 Information
14 Meetings
15 Memory Aids
6 Your Stories
13 Complementary Therapies
1
16 Back Page
Focus on Fundraising
It has been particularly noticeable this year how many of our members have included a donation with their subscription
- this is most welcome. Thank you also to those members who make a regular donation direct into our Bank Account
and through the “Give as you Earn” scheme. This generous personal support is much appreciated and sends a
message to our external funders (such as the Lottery) that members endorse of the work the Society. Your donations
have also resulted in an additional £1,609 from the Chancellor in Gift Aid.
Going the distance
The past few months has seen an unprecedented
number of miles covered to raise funds for the
Encephalitis Society, often in inclement weather.
John Lewis and Rob Kettler - opposite, ran the London
Marathon and raised £2,409.
Ian Rowland, an employee of one of our major supporters
Thurston Manor Holiday Park, also ran the London
marathon and raised £348.
Chris Brydie and Andrew McLearnon ran the Edinburgh
marathon and raised an amazing £7,602.
The John O’Groats to Lands End Bike ride featured in
the last newsletter raised £3,642 for research. “The ride
was hard but great fun and a personal achievement for
all the cyclists”.
Graham Niven ran the Manchester marathon raising £1,500 and a great deal of publicity including a slot on GMTV.
John and Coral Walton, friends of members Ruth and Martin McLeish took part in a sponsored walk and raised £135.
Sponsorship made easy
In June this year, my husband, Andy, and brother, Chris ran the Edinburgh Marathon to raise money for the Encephalitis
Society. Andy and Chris wanted to raise money for the Society in light of how profoundly our father, James Brydie, was
affected by encephalitis in 1995 and the impact that the condition has had on him since that time We were also delighted
to be able to contribute to a smaller charity and to raise the profile of both the charity and encephalitis.
Around March, with all the training for the Edinburgh Marathon well underway, and Andy and Chris doing all the hard work,
I volunteered to be ‘sponsorship co-ordinator’ for the event. I had read an article in the Edinburgh Marathon magazine
about a donations website that allowed people to donate directly and instantly online, saving the inevitable time-consuming
and sometimes uncomfortable task of collecting the pledged cash after the event. For those who didn’t wish to donate
online, we simply collected their sponsorship money in the ‘traditional’ way.
JustGiving.com allows each individual or team being sponsored to develop their own webpage using the custom templates.
The team can add a photograph of themselves, their own information on the event and their charity and details of how the
sponsorship money will be used. The webpage and functionality were well received and everyone found the process of
donating simple and straightforward. Sponsors could select to either donate at the time or to pledge money on completion
of the event as well as electing to allow JustGiving.com to reclaim the gift aid on behalf of the charity.
All the benefits of convenience and simplicity, however, do come at a price. JustGiving.com levied a monthly charge on the
charity to enrol with the website and took a percentage of the donations made through the site as commission. There were
also the credit and debit card charges on all online donations. However, despite these, we believe that the amount and
level of sponsorship that was raised through the website more than counteracted these downsides. Also there was the
“feel good” factor for sponsors and ourselves... people could donate immediately, see the latest running total of sponsorship
and we did not have to ‘chase’ people for money after the event. For that reason, we just covered the costs incurred to
ensure that all sponsorship money reached the Society.
As for the marathon, despite the heat and humidity on the day, Chris ran it in 3h40 and Andy in 4h05....and although hoping
to have done quicker times, there were several repetitions of “never again” at the finish and I was definitely very glad I had
been in charge of sponsorship rather than actually running the race!
Alison McLearnon
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Encephalitis Society Newsletter - No. 33 Summer 2004
Focus on Fundraising
In Memory
We are always touched by the generous and gracious gifts that are given in memory of loved ones who have
been affected by encephalitis. We acknowledge with gratitude the following donations.
● In memory of Andrew Swift, whose tragic death at age 24 is mourned by his family and friends “He lived life to
the full” - £493
● In memory of Jenny Lafferty, who died suddenly after pulling through the acute illness and was expected to
make a good recovery - £170
● In memory of Stan Mumford - £310. Stan and his wife were amongst the earliest members of the Society.
● In memory of Walter Denis Laban, father of member Ray Laban - £265
● In memory of Oiver Claxton - £217
● In memory of Philip Davis - £100 from his work colleagues at Costcutter, Regis Park Ltd
● In memory of Edna Bate’s brother - £400 from his estate
Raising the Funds in a variety of ways
Pease Bay Holiday Home Park in Berwickshire held a charity Open Day and raised over £4,400 for 3 causes Tynebank
Adult Training Centre, Diabetes UK and the Encephalitis Society. We are very grateful to the Dunham family for their
continued support for us.
Trustee Colin Dellar gave a talk on encephalitis to the Cirencester Soroptimist Society and received a donation of
£500 for the Encephalitis Society.
Gillian Wilcox has been busy again, raising funds in memory of her son Paul. The Annual Variety Show raised £1,700
this year, a Race Night raised £900 and a memorial Hockey Tournament raised £500. A total of £3,100. Performers
at the Variety Show will also be entertaining us during the Evening Celebration in York following the Annual Meeting.
Details are on the yellow insert pages.
The Oates family also continue to find ways of raising funds and have sent in £166 from a number of events.
Saint Lawrence, the Parish Church of Upminster, nominated us as Charity of the Month and donated £167.
Income from Legacies would provide a stable future
for the Encephalitis Society
Making a will is a statement about how you want to influence the future. If
you have benefited from the work of the Society help to give us a stable
future by remembering us in your will. In some established charities, legacies
make up more than one third of their income, providing for essential core
needs such as rent, heating, office equipment and supplies.
We are committed to improving the quality of life of all people affected by
encephalitis. We receive no income from statutory sources and valuable
time can be spent filling in endless application forms for grants.
The Guide opposite has been put together by “Remember a Charity”, a
group made up of over 100 charities who have joined forces to raise
awareness about leaving money to charity. Legal organisations are working
together with “Remember a Charity” to help people appreciate how easy
it is to leave money to charity in a will and still provide for family and
friends. This guide contains some invaluable information to help you
make it as straight forward as possible to write or update your will.
You can send for a Guide from the Encephalitis Society or “Remember a
Charity” 6th Floor, 1A Oxendon Street, London SW1Y 4EE Tel:
08081802080 www.rememberacharity.org.uk
Encephalitis Society Newsletter - No. 33 Summer 2004
3
Retreat
The Retreat 2004
On 16th to 18th July 2004 the Encephalitis Society organised a special weekend away (Friday to Sunday), in the
magnificent location of Buckland Hall nestled in the mountains of the Brecon Beacons National Park, Wales.
The weekend was for anyone affected by encephalitis (directly or indirectly) with a focus on ‘Moving on after
Encephalitis’ and included workshops and presentations on alternative therapies, alternative ways of dealing with
life’s difficulties, boosting your immune system, and relaxation techniques among many other things. All the workshops
were optional. Some people attended just to wander the magnificent 60 acres of gardens, parkland and lakes.
The ‘sit-in’ - refusing to leave on the last day!!
What can I say - we had the most fantastic experience together. On a personal note I felt it ranked highly as one of
the most important experiences of my life. 40 people who didn’t know each other coming together as if they had
known each other forever. We laughed until we cried and then we laughed some more. It was fabulous and I would
like to offer my heartfelt thanks to everyone there for letting me be a part of their life and for sharing with them during
this wonderful experience.
I would like to formally thank the people who provided
our workshops, Tim Kjeldsen (Alexander Technique) and
Peter King (Nutrition). In particular I want to note our
thanks to Marian Hooson who not only facilitated the final
group workshop but who also stepped into the breach
and hosted the Relaxation workshop when a small crisis
loomed. Special thanks also goes to Jon Ainley, our
Family Support Coordinator who drove me there and
back, mopped my brow and calmed me at vital moments
and who was an all round pleasure to work with.
Anyway here are one two comments sent in by ‘retreaters’.
Ava Easton, Support Services Coordinator and
organiser of the Retreat Weekend
A small note to all who attended the retreat weekend. Although the Hall was stunning; it was only a bonus for
meeting you all. I learned something from each and everyone of you. I am sure that my pain and anguish will be
more than half after my short experience of meeting you. My sincere thanks to you all.
Harry Swindlehurst.
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Encephalitis Society Newsletter - No. 33 Summer 2004
Retreat
Firstly a Great Big Thank you to all the Husbands, Wives, Partners & everyone
else who came along to care for the SURVIVORS of Encephalitis, because
without them, many of us (myself included) would not have been able to
attend the retreat.
The retreat weekend was a huge success, starting with the arrival on the
Friday evening. Ava had booked a fantastic old country house with magnificent
scenery, and the best thing was, the society had the place to ourselves for
the weekend. The weekend got off to a great start with dinner in a Grand
dining hall with round tables beautifully laid which made socialising easier.
Everyone seemed to gel straight away, and the great thing was the LAUGHTER
& SMILES that surrounded the grounds after dinner. Eric had brought his
guitar and he played music and songs, which a group of us joined in.
Enjoying Dinner
The workshops too, were relaxing, in that, Ava made clear in her opening
talk/discussion on the Saturday morning, that everyone was free to attend or
not as they wished and also not obliged to sit through the whole session if
they got tired (provided we didn’t all get up & leave at once of course!). Even
when the person who was supposed to be doing the relaxation workshop let
us down at the last minute, Ava managed to rally round & quickly find
replacements, Marion stepped in & everything went like clockwork. John
(one of the members) took some of the group outside afterwards and did
some T’ai Chi.
The best thing about the weekend was sharing with others the fact that
although we’d all experienced encephalitis at some point in our lives, all of
us in very different ways, each one of us shared one common thread
LAUGHTER!!!! I think we learnt we are each special in our own way, We
should look forward to TOMORROW & try not to look back.
Life was not easy before Encephalitis - It’s just a little harder now - But with
the support of Ava & The Encephalitis Society We Can Get Through It!!!!
Eric unplugged
Roll on the next retreat !!
Cath Agnew
T’ai Chi helps keep shingles virus at bay
Practising the ancient Chinese art of t’ai chi may help to prevent shingles in later life.
Shingles or herpes zoster is a painful skin rash caused by the
varicella-zoster virus, which can also cause chicken pox and is
one of the causes of encephalitis. The virus can hide away in
nerve cells for decades, kept in check by a virus-specific
substance produced by the immune system. If illness or old
age reduce production, the virus can flare up. Four months of
t’ai chi thre times a week, however, boosts levels of the zoster
virus-specific immunity factor by 50 per cent, according to a
small study at the University of California, Los Angeles,
Neuropsychiatric Institute (Psychosomatic medicine, vol 65,p1).
Michael Irwin, the doctor who led the randomised, placebocontrolled trial of 36 healthy people aged over 60, thinks there
T’ai Chi workshop held at the Retreat
is more to it than exercise being good for you. “Though t’ai chi
has a modest aerobic exercise component, it is a series of 20
slow movements and is not typical exercise such as running,” he says. There was no link between improvements
in physical functioning and changes in immunity, he says. Irwin speculates that t’ai chi reduces levels of stress
hormones and that this boosts the immune system.
The benefits of t’ai chi may not be limited to shingles. “I would expect increases in immunity to other viruses
too”, Irwin says.
First published in New Scientist 4 October 2003
Encephalitis Society Newsletter - No. 33 Summer 2004
www.newscientist.com
5
Your Stories
JEAN’S STORY
I had just got through the Christmas festivities when I came down
with a bad cold, and flu-like symptoms. On Monday 5th January I
went to the doctor who told me I had pressure on my inner ear and
prescribed antibiotics. The following morning I was starting to lose
my balance and by Tuesday night I wasn’t capable of standing, my
speech was slurred and I became agitated. At lunchtime on
Wednesday 7th January 2004 I was rushed into hospital. The next
part I was told by my family as I have little or no recollection of the next
couple of weeks.
On Thursday morning I was taken to the high dependency ward and by a
process of elimination was diagnosed with encephalitis and started treatment
with the anti-viral drug Acyclovir. At this point I had stopped speaking, didn’t open my eyes and was having difficulty
breathing. That night I fell into a coma and was moved to intensive care where they put me on a ventilator and
sedated me to put me at ease.
The following 9 days were difficult for my family and friends. Although I had started to initiate my own breathing my
coma score dropped to the lowest level. I had stopped responding to anything, even being stabbed with a needle.
Four days into the coma, after taking me off the sedative the doctors did an EEG to look at brain wave activity, it
wasn’t looking good. I’d had a global ‘shut down’. My family was taken on one side and was told that the prognosis
was bad; I was in a deep (alpha) coma.
They likened my recovery to a miracle, not impossible but unlikely. I was fitted with a tracheotomy and an MRI scan
followed. The doctors had been expecting to see some kind of severe brain injury but thankfully this was not the
case, the scan did not show any abnormalities. As I no longer needed ventilation they moved me to high dependency
where I spent the next 4 days still in a coma. After 7 days of anti-viral therapy they started me on a course of steroids
to reduce any residual inflammation.
On the night of the 16th January I was moved to a normal ward, still in a coma, as they felt there was little more
specialist care could do for me. The following morning I opened my eyes for the first time and started to come out of
my coma. Over the course of the next 3 - 4 days, so I was told, I started to be able to squeeze hands, move my legs
and shake/nod my head. I was quite calm, and supposedly did a lot of smiling when people talked to me. The
following 3 -4 days were very different, I pulled the food tube from my nose twice, pulled my tracheotomy tube from
my neck twice and had periods of agitation, anxiety and confusion. At times I got angry with my family and the
nurses, however each day there were small signs of improvement. My vision was still very blurry and as it improved
I realized I had double vision.
My family found it a difficult time with every day being different, a bit like a roller coaster as the nurses in intensive
care told us it would be. To quote my daughter, you need to stay positive, patient and optimistic.
I stayed in hospital until February 17th and with much physiotherapy left able to walk with a stick, see through one
eye, eat and dress myself. All the doctors were really pleased with my progress, but being determined to get home
I think helped me to push myself physically and mentally each day.
It is now almost 3 months since I left hospital and I am very thankful for my recovery, which I would say is progressing
very well. I still cannot walk very far, or climb many steps; I get very tired each day and am now having problems with
my breathing. An E.N.T. consultant has told me that my vocal chords are not working correctly, intermittently they
open when they should be closed and close when they should be open. My vision has corrected itself completely,
and with the exception of the early part of my illness, I haven’t lost any of my memory.
At the first out-patient visit to the consultant neurologist I was told that I had had Miller Fischer Syndrome, which
resulted in the encephalitis and that there was a good chance of a full recovery.
Part of the reason I wanted to write in with my story is to share the happy ending and to give other people hope. My
family found the Encephalitis web site very helpful - I hope you do too.
Jean Ford
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Encephalitis Society Newsletter - No. 33 Summer 2004
Your Stories
MY WIFE FOR THE PAST 49 YEARS GOT
ENCEPHALITIS AND I FEEL SO SORRY FOR MYSELF
In 2001 we went to see my wife’s sister who was dying of cancer in Montana,
U.S.A. We had 10 days with her and on the plane home from Seattle my wife
started with a pain in her head, but we put it down to sitting on the plane
waiting for take-off for over 2 hours in sweltering heat without air conditioning.
The stewardess gave her some painkillers and it seemed to help a little but
she was sleepy all the time.
On our arrival in Amsterdam my wife said to me that the lights were dim. We
had a 1 hour wait in the airport for the flight to Humberside and the pain got
bad again in her head. Again I asked the stewardess for some tablets and as
before they could not do enough for us; KLM - Northwest, a first class service
and yet we only went economy class. When my son Paul came to pick us up
he commented how quiet my wife was, which was out of character but she just said she was so tired as we had been
on the go for 29 hours. So again it was overlooked as being just tired.
In the morning Mary followed me into the living room and was violently sick all over the carpet. She was admitted to
hospital and as the night wore on she got sicker by the minute. She tore up the bed sheets with her teeth, a terrible
thing to see. The doctor told us he would put Mary on a drug called Acyclovir, used for patients with encephalitis. At
5 a.m. Mary had a fit and another at 7 a.m, then became unconscious and was in a serious condition for 12 days until
she stabilized.
As I was mostly in hospital beside her and had stayed overnight a lot of times I was worn out and I went into a panic
attack. The staff thought I had had a heart attack but thankfully it was angina brought on by stress. I was admitted
to the same ward so at least I could visit my wife.
All the time while Mary was in hospital I was keeping her mouth moist with a syringe, as she could not produce saliva,
I was feeding her day by day and she also had no tears in her eyes and at times they were so dry we had to use eye
drops, which she hates.
Mary was then transferred for rehabilitation as we thought it would be one step closer to getting her home. We also
thought she would be in better hands. How wrong we were. The staff had no experience with encephalitis, they left
her drinks but she did not know how to drink, it was the same with food, it was left and untouched. I was told to go
away for a few days to my sister in Holland and to this day I still regret going. On my return she looked worse than
when I left. I called for the hospital doctor to see her and she was transferred back to hospital.
In the meantime I found out through the Internet about encephalitis and I became a life member of the Encephalitis
Society. No-one on the staff at the Rehabilitation unit knew about encephalitis or that it came in different forms. That
night I sat down and got as much information as possible from the website and printed 20 copies and gave them to
the staff where they were gratefully received. Thankfully everyone was reading them so your information was
invaluable for my wife’s future care.
I brought my wife home from hospital every day for 4 weeks, from 10 a.m. to 9 p.m., so that she could get used to our
home again. It took about a week before she said to me “mine” and was pointing to different parts in the home, I was
so happy for her. We had to use the wheelchair a lot for a start, from the bed to her chair and to the bathroom. She
was doubly incontinent at this time and it was a struggle for me to wash her day and night. This lasted for nearly a
year, then she got used to a walking frame and had a special swivel seat fitted in my car. She used the walking frame
a lot in our home.
When it was time to go to the hospital for check ups we used the wheelchair. After a month of doing this I was asked,
“who do we keep in hospital, you or your wife?” I was totally exhausted. My wife was kept in and was transferred to
the Psychiatric Ward for 10 days, but she kept on to me to take her home. She made me aware of this through
pointing to the doors. Also she made it plain to me she did not like the bed, she put her hands together and put them
on the side of her head and said “home better”. This I took as a sign to take her home again and I was feeling so sorry
for her so I took her home.
After being home for about 4 weeks she became abusive towards me and to this day she is becoming more abusive
towards me. It is strange but as soon as a carer comes in she changes into the loving person I used to know. Just
lately though, she is doing the same to carers and family members and friends. We used to call them friends but we
have none left due to her being so abusive towards them.
We seldom go out now, as I am too afraid she will throw a wobbler. I took her to Asda one day and it took 4 staff to
help me to get her back into the car. I get myself so worked up. I feel I want to run away and I am so depressed, why
Encephalitis Society Newsletter - No. 33 Summer 2004
7
Your Stories
is it when you need help more than anything, everything falls on deaf ears.
As for me, I was always independent and did everything myself. Last September I fell out of an apple tree. I was
standing on a ladder and it tipped over, I fell approximately 12 - 14 feet. Luckily it was on a Saturday and my
grandson was helping me. He called an ambulance but they did not want to take me to hospital by road so an Air
Ambulance helicopter was called. I remember little of the flight except that I was in a lot of pain and I was in hospital
for 12 days. I had one large fracture and 3 smaller ones in my back and my lower back was compressed. I was in a
lot of pain and I suffer a lot from this up to the present time. I also had a heart attack a good few years ago and was
operated on and left with angina.
So at times I wonder what will happen to my wife and this leaves me angry and frustrated a lot, as does the lack of
help we receive from everyone. I feel that the whole world is against you for growing older and I also have had a lot
of crying sessions on my own.
On reading your stories in Newsletter 31 this winter and reading page 8 I only wish I could write like the Lady did in
her letter. I feel she was writing for me. My wife spits in anger at me most of the time but at times she does it to the
children and grandchildren and this makes me so sad. People tell me how good I look after my wife but at what cost?
No-one seems to understand how as 24/7 carers, we feel we also have feelings and get tired. I hope and pray I can
get some respite care shortly, after waiting for this for nearly 2 years. I could go on and on but people think the worse
of you or they think you moan all the time.
So to end this letter, if you can make sense of it, I only had 3 years schooling during the last World War II. At that time
I was living in Holland where I was born. I met my wife while I was in the Merchant Navy in Dublin before I served my
time in the Dutch Royal Navy. We got married in Dun Laoghaire, Ireland and we both worked hard to bring up our
family and hoped for a nice retirement: this is the outcome. Hopefully I can carry on and look after my wife in the time
to come, but for how much longer, it makes me look towards the future with fear.
Thank you for listening to me and keep up the good work.
Mike Dykstra
This is Jonathan’s story.
Jonathan was born in 1995 and started school in 2000 everything was fine until September 2001 when I had got
a phone call from the school saying that Jonathan had collapsed in the school playground. I went to the school
and was shocked to find him lying unresponsive in the office. We phoned for an ambulance and he was rushed
into hospital. While in hospital Jonathan had a lot of tests to find out why he had collapsed, finally an MRI Scan
confirmed that he had Herpes Simplex Encephalitis and he was given Acyclovir. The Encephalitis has led to
Jonathan taking Epileptic seizures which are proving to be difficult to control, he has been on phenytoin,
carbamazepine, lamotrigine, clonazepam, topiramate, Sodium Valproate and Keppra.
Jonathan attends a mainstream school but he has developed learning difficulties and behavioural problems. His
schoolwork has suffered but no extra help has been offered as they say his abilities are still within his age group.
It has helped to know that their are others like me which are going through the same thing.
Kate Scott, Jonathan’s Mum
Pat’s Story
Pat Vaughan’s story was told on BBC television in July as part of the Medical Mysteries series. The programme
featured the search for the cause of Encephalitis Lethargica a condition that affected thousands of people in the
1920’s. Dr Russell Dale, who is a member of our Advisory panel, felt that the disease was more common than
realised. He started tracking down cases. And gradually built up a case load of over 20 patients - all with Encephalitis
lethargica.
Together with a colleague, Dr Andrew Church, the two doctors began analysing all their patients to see if they had
anything in common. The first clue was that many of the patients had had a sore throat before they were struck down
with the illness. So the two doctors started looking for evidence of bacterial infection - and particularly streptococcus
bacteria which is a common cause of sore throats. It seems that “Encephalitis Lethargica is a “post-infectious”
encephalitis or ADEM. In this type of encephalitis the body has a massive immune reaction to an infectious agent
(streptococcus bacteria) and the immune response itself attacks the brain.
If you missed the programme the Encephalitis Society has purchased 2 copies, one in video and one in DVD format.
These are available for loan. Please send a cheque for £10 to cover post and package for a one week loan period.
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Encephalitis Society Newsletter - No. 33 Summer 2004
Carers Issues
The Selfish Pig’s Guide to Caring
Although carers are, by definition, anything other than selfish pigs, they are liable to
feelings of guilt, probably brought on by fatigue and isolation. Hugh Marriott had to
find out the hard way about things he would have liked to have known at the start of his
caring responsibility but no one told him. So, after many years caring for his wife, he
has written the book for them based on his own experiences of caring. All those things
he’d have liked to know but was afraid to ask.
His aim is to bring into the open everything that goes on behind closed doors. And he
does. The book airs topics such as sex, thoughts of murder, coping with incontinence
and dealing with the responses of friends and officials who fail to understand.
The selfish Pig’s Guide to Caring is a frank and informative book, written in a relaxed
and easy to read style.
Published by Polperro Heritage Press, ISBN0954423313, the book costs £9.95
A Carer and Family Guide - Coping with Acquired Brain
Injury.
This is a new publication from Headway Ireland aimed principally at family members
or carers of someone with an Acquired Brain Injury, following their discharge from
hospital or rehabilitation treatment. It contains an overview of rehabilitation options
and strategies on how to cope with various consequences of an Acquired Brain
Injury.
The booklet was compiled by Headway Ireland staff with the help and advice of a
panel of professionals and carers. Chapter headings include “Understanding”,
“Coping with the Consequences”, “The impact on you: understanding your feelings”,
“The impact on you family”, “Taking care of yourself”.
This is an excellent booklet for carers anywhere and can be purchased direct from
Headway Ireland price €11 or from the Encephalitis Society price £6. The booklet
can also be downloaded as a.pdf file from Headway Ireland’s web site
www.headwayireland.ie
Carers Bill
The campaign to ‘Give Carers a chance’ has been successful and the Carers (Equal Opportunities) Bill became an
Act on Thursday 22 July 2004, when it received Royal Assent. The new Act is likely to be implemented in England
and Wales on 1 April 2005. Draft guidance is likely to be published for consultation after the summer in England.
Wales will also have a separate consultation organised by the Assembly.
The new Act, when it comes into force, will give carers more choice and opportunities to lead a more fulfilling life.
The new law will:
● place a duty on local authorities to tell carers about their rights
● place a duty on local authorities to consider whether the carer works or wishes to work, wishes to study or have
some leisure activities, when they are carrying out a carer’s assessment
● gives local authorities strong powers to enlist the help of health, housing and education authorities in providing
support for carers.
The Act has not been published yet, but the Bill, with the same text, can be found at: www.publications.parliament.uk/
pa/cm200304/cmbills/072/2004072.pdf
Dr Hywel Francis, MP for Aberavon, introduced the Act as a Private Members’ Bill in January 2004. The Bill received
cross-party support and Government support, and was led in the House of Lords by Lord Ashley, the veteran disability
campaigner.
More information can be found on Carers UK web site at http://www.carersonline.org.uk.
Encephalitis Society Newsletter - No. 33 Summer 2004
9
Information
Depression and Encephalitis
By Ava Easton
Why does depression occur?
Encephalits may be an extremely serious condition, and one which may result in major
life changes for individuals and their families. Often feelings of grief and despair
occur as part of a normal reaction to the loss of previous life style and relationships.
This type of mood change should ease over time as people adjust to their new
circumstances.
However encephalitis may often cause brain injury, which itself causes changes in
cognitive abilities and skills. For example there may be problems with thinking,
changes in ability to initiate activities, difficulty with reasoning, memory problems and fatigue. Some of these changes
are similar to those that occur in depression, and so it can be quite hard to tease out what changes are due to
cognitive changes, and what are due to emotional factors. Often people who are felt to be depressed are offered
treatment (for instance medication or counselling) when in fact advice on the brain injury and how to deal with the
problems it causes might be a more effective intervention.
Sometimes, a more marked depression begins to occur as the injured person’s insight and awareness of the new
situation grows. It results from a realisation that life can never be the same as it was before. The depressed person
may often be unable or unwilling to talk about their feelings or seek outside help. As mentioned, these emotional
difficulties may be mistaken for cognitive problems due to brain injury, or, vice versa, the cognitive difficulties might
be mistakenly labelled “depression”. It is important to try to get to the bottom of this, if necessary with the help of
professional advice.
The occurrence of depression, although it poses a great challenge, can be viewed as a sign of progress: it means
that the person is trying to work through the emotional consequences for themselves.
However, if depression deepens, then it can begin to have a very negative impact upon a person’s ability to continue
to apply themselves to rehabilitation, or to return to their former life style. It is at such times that it is important to
remember that such a level of depression isn’t a normal part of recovery, and that perhaps treatment is called for.
Treatment may be either medical - the prescription of anti-depressants, psychological - through counselling or a
“talking therapy”, or a combination of these methods.
What do anti-depressants do?
Anti-depressants may help to restore the brain to a more normal biochemical balance, and thus help to elevate the
mood back to its usual level. Some individuals find them very helpful - others less so. Often the only way of knowing
whether or not they will help is to try them and to monitor carefully whether mood improves during treatment
Which anti-depressant will I have?
There are many different anti-depressant tablets to choose from. Some are more potent then others, some longeracting, and many have other effects which may or may not be desirable. The doctors will weigh all this up in determining
which particular antidepressant to recommend for you, and will explain to you the reasons for this choice.
Often a relatively low dose may bring about a beneficial response.
It can take time for a doctor or psychiatrist to find the correct tablet or dosage. Patience and persistence may be
needed
Are the drugs addictive - will I get dependent on them?
The anti-depressants that we use these days are not, in themselves, “uppers” or “pep pills”. Usually 6 months
treatment is sufficient to restore the normal balance of mood, and they may then be withdrawn. If you subsequently
become depressed again, another course can be given. When anti-depressants are used in this way, people do not
get tolerised (used to them) or addicted (dependent on them) as was sometimes the case with the more old-fashioned
drugs.
10
Encephalitis Society Newsletter - No. 33 Summer 2004
Information
Are there any side effects?
The anti-depressant drugs we use today have very few side-effects and are generally very safe.
However there are some circumstances in which they are best avoided - they should not be given to people with
uncontrolled epilepsy, and the doctors must make sure that they do not interact with any other medications you are
taking. Any drug can cause an allergic reaction, so if you experience any rash or other symptom which you suspect
may be a side-effect, you should report this to the nursing staff (while you are in hospital) or to your GP (when at
home). Minor symptoms such as dry mouth and stomach upsets can occur, but usually resolve over time, so it is
worth persisting with treatment to see if this happens. Otherwise the symptoms will resolve on stopping medication.
How will I know if they are working?
For many people with depression following brain injury, antidepressants are extremely helpful, but not in all cases.
Nobody wants to be on tablets which are not helping them, so the first 4 weeks of treatment are normally regarded
as a ‘try-out’ period. You can see how you feel at the end of that time, and you can decide together with your doctor
whether or not it is worth continuing the full course.
How will I know when to stop?
If the treatment is effective and you agree to continue the full course, it is normally recommended you remain on the
tablets for 6 months. At the end of that time, you should see your GP and arrange to end the course. Rather than
stopping suddenly, your doctor will normally recommend tailing the tablets off gently. As the brain re-balances itself
off the medication, it is quite common to feel a bit low for the initial 3-4 weeks after stopping the tablets. However,
this is not a sign that you need to re-start the treatment. Usually the mood stabilises after 1-2 months, but if it does
not you should consult your GP.
Treatments in addition to Anti-Depressants
Effective psychotherapies (talking treatment) may enable people to recover from depression. They also help prevent
recurrences. If given proper care, people with depression can achieve recovery and lead productive and enjoyable
lives.
How to help yourself:
● Avoid alcohol as it is a depressant, and also interacts with many drugs.
● Eat fresh meats, fruits, vegetables, brown breads and rice and plenty of water. Avoid processed foods, and drinks
with high sugar content, such as fizzy pops and sodas.
● Set goals that you can achieve in a short time: Break large tasks into small ones, set some priorities and do what
you can as you can. When setting goals, start small and go for a quick win. Then use the achieved goal as
evidence of the progress being made.
● Refrain from assuming too much responsibility for the time being.
● Don’t turn your house into a tomb. Get out, be with other people, find someone with a friendly ear, participate in
activities that help you feel better.
● Take control by exercising, going to movies, events or doing other activities - but don’t overdo things!
● Even with medication, your mood will improve gradually, sometimes over 4 to 6 weeks. Don’t expect a quick fix.
● Postpone big decisions until the depression has lifted. This may include significant transitions, such as changing
jobs, getting married or divorced. You might want to talk these things over with a counsellor or other therapist.
● Try to think good thoughts. Depression often manufactures bad thoughts, whether or not something bad is
actually going on.
If you are a carer..
Acknowledge the uniqueness of the person’s loss, and help them identify their own strengths and assets, no matter
how small. Validate how they are feeling while at the same time offering support and encouragement for their future.
This can be done by listing concerns on paper and setting goals to overcome them. It is also important to focus on
the positive aspects of the recovery and this can be done by keeping a diary and reflecting back on the progress
made, which on a day-to-day basis may be virtually unnoticeable.
Be aware of the strain that taking care of someone who is depressed can produce, and take care of your own
reactions and feelings.
Encephalitis Society Newsletter - No. 33 Summer 2004
11
Book Review
Suicide
Coming to terms with a depressive illness is not easy, although research shows that many people can benefit quickly
when they ask for treatment. People with depression may well benefit from anti-depressant medication, but they also
need to talk, as this can act as a good “safety valve”: it releases pressure.
If you suspect someone may be considering suicide, give them the opportunity to talk and encourage them to tell
you about their fears. Don’t be afraid to mention the word suicide in asking how they are feeling. This is not likely to
put the thought into their head, but on the contrary, they may be extremely relieved to hear that you understand the
severity of their depression. Listen closely and show that you are listening by paraphrasing key points and feelings.
Validate how they are feeling. Also, clearly state the options for help that are available to the person with depression.
Treat thoughts or talk of suicide very seriously, and quickly seek professional help via the GP. They may recommend
counselling from a qualified counsellor.
Who do I ask if I have any other questions?
If you have any questions, you should consult with your doctor.
This factsheet was completed with the help of information provided by Professor Lynne Turner Stokes and Dr
Frances Clegg, Northwick Park Hospital
Further sources of information:
The Samaritans
www.samaritans.org.uk
Tel: 08457 909090
Depressives Anonymous
Tel: 01702 433838
Depression Alliance
www.depressionalliance.org
Tel: 020 7633 0557
Aware (Republic of Ireland)
www.aware.ie
Tel: 1890 609090
In the Shadow of Memory
By Floyd Skloot
ISBN: 0803242972
Reviewed by Ava Easton
Floyd doesn’t explicitly say he had encephalitis, however I checked this out with him and he confirms it is
encephalitis he is referring to when he describes ‘a virus that targeted his brain’.
This book is a candid memoir of living with a shattered memory. There is no doubt that his book is an inspiration
to those who may have been similarly affected and indeed their families. Floyd offers hope and is incredibly
philosophical in his approach. He states
‘A process had begun by which I needed to redefine myself, to construct a new sense of who I was and how I
dealt with the world as an intellectual shadow of my former self’ Readers will be heartened to monitor his
progress... ‘I have changed. I have learned to live and live richly as I am now’.
Unfortunately Floyd often refers to his ‘dementia’ which for me, and many UK readers, suggests a progressive
decline. It is important that readers understand that memory problems following encephalitis are not normally
progressive in nature.
My only other criticism is the time he takes midway during the book to recount his family background and the
life, in particular of his mother. For me this did not add to the book in any significant way and I would rather have
heard more about his experiences and feelings in terms of the difficulties he has been left with.
However, with Floyd’s level of difficulties it is a miracle that he has written a book, not to mention one that is so
articulate and considered in it’s approach. There is no doubt this book will add significantly to personal accounts
of encephalitis and its consequences, and brain injury literature in general
12
Encephalitis Society Newsletter - No. 33 Summer 2004
Complementary Therapies
The Alexander Technique
What is it?
The Alexander Technique has been taught in the UK since 1904. It was developed by
Fredrick Matthias Alexander (1869-1955), an Australian actor who had problems with his
voice while performing Shakespearian recitals. After unsuccessful treatment from doctors
he embarked on a course of self-examination. This led him to discover that it was the way
he used the whole of his body that was responsible for the loss of his voice.
The technique he developed is a unique and practical method of becoming aware of how
we use our minds and bodies. By choosing the way in which we react to stress and by
letting go of unnecessary habits and excessive muscular tension, we can rediscover our
natural balance and ease of movement. The technique is taught on a one-to-one basis,
with teachers using verbal instruction and gentle guidance with their hands. The Alexander
Technique is not related to disciplines or therapies such as yoga, pilates or physiotherapy,
but can be used in conjunction with them to enhance awareness and balance in the body.
What can it help?
Tim Kjeldsen demonstrates
the technique the at
Retreat Weekend 2004
The technique is primarily an education in how to use your mind and body, not a medical therapy. Alexander teachers are
not medically trained, so cannot diagnose health conditions. In general, learning and applying the technique leads to less
tension throughout the body, and is very useful for postural problems to make you feel light and poised. This can be
beneficial for conditions like anxiety, high blood pressure, some migraines, asthma, arthritis, back/neck aches, some voice
disorders, repetitive strain injury (RSI) and joint problems.
The Parkinson Disease Society has funded research into the technique and the NHS is to conduct a large scale trial with
Southampton University on the effects of the technique on back pain.
Due to its origins the Technique is very strongly represented in the acting, drama and music circles. Most drama and music
schools now have Alexander teachers working with them, as it is widely recognised as enhancing performance in any
activity.
Some comments made by pupils after lessons give a flavour of the response to learning the technique.
‘I feel ten feet tall after a lesson’
‘My RSI pain has really been eased’
‘I am much calmer after my course of lessons’
What happens in a lesson?
During a lesson, the teacher works in partnership with you to solve your particular posture problems. They may first start by
analysing a simple everyday action, such as getting in and out of a chair. You will learn to observe how you are using your
body and the teacher will use his or her hands to guide you and demonstrate how to move without unnecessary stress on
the body. Later on you work with other movements and actions that may be causing you problems.
Part of the session may be conducted with you lying down on a couch with the teacher working around you, moving your
limbs and encouraging you to release unwanted tension held in the body. This lying down is encouraged by teachers as
being the only exercise a pupil has to do on their own.
How long does it take?
The number of lessons needed is dependent on the individual, as the technique is a learning experience. Remember that
you are attempting to change the habits of a lifetime of posture and movement. However, it is amazing how much you can
change even in a few lessons. The usual guideline is that it takes between twenty to thirty lessons to establish a permanent
change. Many pupils carry on having lessons as they find them enjoyable and helpful with chronic conditions.
How to find a teacher
Alexander teachers undergo a three-year full time training course. The majority of teachers in the UK are members of The
Society of Teachers of the Alexander Technique (STAT) and display MSTAT after their name. To find a teacher near you, look
up teachers by area on www.stat.org.uk or call the STAT office on 0845 2307828.
Kamal Thapen MSc MSTAT (based in South London)
Mobile: 07775 934 448
Email: [email protected]
Encephalitis Society Newsletter - No. 33 Summer 2004
13
Meetings
Encephalitis Society
Annual Meeting 2004
York Early Music Centre
Saturday 6 November 2004
PROGRAMME
10.00
Coffee and Registration
10.30
Welcome
10.45
Speaker to be confirmed
11.30
Annual General Meeting.
12.00
Presentation of:
Encephalitis Society Meeting in
Northern Ireland
The date of Saturday 11th of September 2004 has been
booked at the Royal Hotel 26 - 28 Quay Street, Bangor,
County Down. The meeting will commence at 1pm. All
contacts in Ireland (North and Republic) will be sent
details nearer the date. If you live outside Ireland and
would like to attend, please phone 01653 692583 for
details and a map.
You can make this a weekend break
Anyone attending the meeting who wishes to stay at
the Royal Hotel prior to the meeting can benefit from
the discounted rate of £25 per person sharing or £35 for
single occupancy.
●
Exceptional Service Awards
●
Awards for Fundraising
The Hotel can be contact by phone on 028 9127 1866
Email: [email protected]
●
Honorary Life Memberships
Web site: www.the-royal-hotel.com
12.45
Lunch
14.00
Workshops / Discussion Groups
Encephalitis Society Meeting in Bristol
15.30
Closing Remarks
Saturday 23rd October 2004
Room 9, Apex Conferencing,
11 Apex Court, Woodlands, Bradley Stoke North,
Bristol, BS32 4JT
12.30
Room Open
1.00
Meeting Starts
1.00
Encephalitis and its consequencesAva Easton,
Encephalitis Support Services Coordinator
2.15
Break
2.30
Speaker on Rehabilitation,
Frenchay Regional Rehabilitation Unit
3.30
Discussion
4.30
Depart
Everyone Welcome. A programme and map will be
mailed out to members and contacts in the South West
region. Please contact the Resource Centre if you live
outside the area but would like to attend.
Everyone is welcome but travel details and map are
only sent to members of the Encephalitis Society.
Membership numbers are printed on the address
label of your envelope. Current membership
numbers end in /04 /life /free. If you are not a current
member and would like further details please contact
the office.
Evening Celebration
An evening of music, poems and drama will follow
as part of our 10th Anniversary celebrations. The
event is by ticket only price £5. Details of this and
accommodation can be found on the yellow insert
pages.
Me Myself My Memories
By Gillian Shaw
Reviewed by Ava Easton, Support Services Coordinator
Gillian has produced a collection of drawings, writings and photographs from her childhood through to the present day. They
describe her journey before during and after her experiences of encephalitis - a memoir of a fractured self, for want of better
words. There is no doubt that Gillian’s book has been a cathartic process for her - her visual imagery and writings are
reflective of her experiences and feelings. This book would allow people a glimpse into her world although I am unclear about
its wider appeal. People with encephalitis who have visual disturbances might find some of the pages difficult to read where
there is both text and imagery. In addition I would urge a word of caution with regards Gillian’s remarks about encephalitis.
Encephalitis is not a virus as she describes. Encephalitis is inflammation of the brain, usually the result of a viral infection.
There is no doubt that Gillian is very talented and such a visual image of people’s difficulties following encephalitis is a useful
tool in the campaign to raise awareness.
Anybody interested in obtaining a copy should write into the office and we will pass on your requests to Gillian. The cost of
the book is £12.50
14
Encephalitis Society Newsletter - No. 33 Summer 2004
Memory Aids
Memory Aids that I found useful
By Patricia Tuhill (edited by Ava Easton).
1. The Plastic Shoe Storage on a Hanger
A pocket per shoe kept in the kitchen with sticky labels on each pocket i.e. names of friends, days of the
week etc. In addition I had a large block of brightly coloured ‘post-it’ notes. I wrote things on them and put
them in the right pocket. I could get to the right pocket for example when a friend phoned or visited or on
a particular day of the week. It was like a filing system of things ‘going on’.
2. Large A4 7 days to view Diary.
I wrote in what I need to do and what appointments I had. I had a ‘carried over’ space to highlight the
things I hadn’t done and Urgent Reminders section. This worked alongside a calendar.
3. Magic Drawing Board
This is a child’s toy that you can write on and pull to erase. It is A5 size and you write things down with a
plastic pencil, e.g. things to do today or things not to forget. When finished you pull the right hand side
and it ‘wipes off’ the writing. This acted as a daily urgent reminder or to show what else I had to do.
4. Dictaphone
This was ideal as I could talk into it and in ways that I know what I mean; ways that were meaningful to me
and that I would understand. It is easy to use and I keep it by my bed at night as I often waken and think
‘have I..?’, ‘did I...?’. So, I record my thoughts and then go back to sleep.
5. A5 Diary by the phone - 7 days to view
I write in who I phoned, who phoned me and record any important things and often ‘quote’ quite confidently
who said what and when.
6. Phoning my answerphone
If I am not at home I phone my home number and leave myself a message that I can get when I return and
can act upon.
7. Brightly coloured notes
Throughout my house I have brightly coloured notes with reminders ‘Is there water in the kettle before
you boil it?’, ‘Have you locked this door?’, ‘Is this turned off?’, etc. They are all placed where I can’t miss
them and I have lists on every door, so that on exiting I am reminded ‘Have you locked...?’, ‘Have you
turned... off?’, ‘Is... turned on/off?’. On the front of my bedroom door I have a list of ‘Did you...?’, ‘Have
you...’ - these are all to do with security and safety as I go to bed - it acts as a final checklist.
8. Pager System
I did try the pager system to alert me to take drugs, to eat, to do things - this was so helpful when I was still
‘learning’ to be able to do some things for myself. Now I have an alarm clock on. So I know why I have set
it, I have 4 ‘standard’ reasons - 1. Eat; 2. Drugs; 3. Rest; 4. Turn on/turn off (i.e. immersion heater etc.).
9. Plug Timers
I have timers on the plugs for my TV, lamps etc. I often fall asleep on the sofa and stumble to bed totally
confused - it is a safeguard that these things will turn off.
10. Memory Board
I have an on-going memory board of ‘not the run of the mill’ activities, i.e. sort the airing cupboard, sort
paperwork etc. All these are for me to do with my dad.
I hope these ideas are useful to other members of the Society. They have helped me and took a while to learn and to accept
but it was not too long before I felt I had a short-term memory again. It is not ‘foolproof and sometimes it goes wrong and
doesn’t work but that happens to everyone. So all it does is make me feel normal (whatever that is!). I can look smug when
my Dad says ‘When is...?’, ‘Did you post...?’ ‘When is....’s birthday?’ ‘YES I DID!’ Can be my reply more often than not!
Encephalitis Society Newsletter - No. 33 Summer 2004
15
Back Page
The National Programme for IT
Over the next ten years, modern computer systems, fit for the twenty first century, will
be installed in the NHS. Once the work has been completed, these systems will connect
more than 100,000 doctors, 380,000 nurses and 50,000 other health professionals in
England. It will also give England’s 50 million+ patients easier access to their own
health and care information, with each person having their own electronic NHS Care
Record.
This leaflet describes the changes and the benefits that computers and information
technology will create through the work of the National Programme for IT.
Although most GP surgeries, trusts and healthcare communities already store patient
information on computer systems, these systems are not linked nationally. This
means your health record cannot be accessed easily and there is currently no
national means to transfer your health and care information efficiently, securely
and confidentially from one NHS organisation to another. The National Programme
for Information Technology will address these issues.
Take me home
Pamela Myers, one of our life
members, brought to our
attention a very interesting
article on Polly the world’s
first “Alzheimer Aid dog”
featured in the August
edition of “Dog’s
Today”. In addition
protecting her owner
from
domestic
hazards Polly has
also been trained to
lead her owner back home when he becomes disorientated.
Polly’s owner’s quality of life has improved immeasurably
helping him to recover his physical health by allowing him
the freedom to walk long distances; emotionally she
provides him with companionship, offers him the
opportunity to interact socially and boosts his confidence.
The Alzheimer’s Aid Dog is the result of a pioneering project
carried out in Israel at the Centre for Service and Therapy
Dogs www.dservicedogs.com
Support Dogs is a UK charity dedicated to improving the
quality of life for people with epilepsy and people with
disabilities by training dogs to act as efficient and safe
assistants. Support Dogs can also train dogs to assist and
support their disabled owners with their specific disability.
Each dog is taught specific tasks for his owner’s needs,
enabling the disabled person to lead a fuller and more
independent life.
SUPPORT DOGS, Unit 6, Rotunda Business Centre,
Thorncliffe Road , Thorncliffe Park , Chapeltown ,
SHEFFIELD, S35 2PG
Telephone: - 0114 257 7997
E-mail [email protected]
16
Melissa, from Sienna Productions is looking for
people who would like to participate in a
documentary programme currently titled as “Forget
Me, Forget Me not,” to be aired on terrestrial
television. The programme will explore how people
live and deal with brain injury and memory loss.
Melissa is currently looking for people willing to share
their experience and is hoping to pitch the story along
the lines of how memory loss affects the family as
well. If you think your story or that of your family can
help, please contact Melissa at Sienna, 0208 940
5571
WHAT DO YOU DO WITH YOUR NEWSLETTER
WHEN YOU’VE FINISHED WITH IT?
Please don’t bin it! It’s a useful tool in the campaign to
increase awareness of encephalitis - so take it to your
doctor’s surgery, local dentist or hospital waiting room
and leave it for others to read.
Head Office 7B Saville Street, Malton,
North Yorks, YO17 7LL
Telephone
01 653 699 599 (Supportline)
01 653 692 583 (Admin )
Fax
01 653 604 369
E.mail:
[email protected]
Web site:
www.encephalitis.info
The Encephalitis Support Group is a charitable Company Limited by
Guarantee, registered in England and Wales No: 4189027. Registered
Office as above. Registered Charity No: 1087843.
Contributions to the newsletter are welcome. The
deadline for items to include in the next Newsletter is
30 November 2004
Encephalitis Society Newsletter - No. 33 Summer 2004
The Encephalitis Society does not necessarily share all the views and opinions expressed in the newsletter
The booklet has been widely distributed and the Encephalitis Society has a number of copies. Copies are also
available in electronic (.pdf) form. Contact the Society for details of how to obtain a copy.