Contents
Pick’s
Disease Support Group Outings
LILLE 1999
We had a marvellous outing to Lille by Eurostar to meet
the French
Frontotemporal Group. Lynn Goodfellow had made the arrangements
and all we had to do was turn up with our passports. There were nineteen
of us, a mixture of sufferers, carers and professionals. We sat together
and were able to swap seats easily to exchange experiences and information.
It was particularly nice to meet members for the first time and to introduce
professionals to the PDSG. Carers of sufferers of CLBD who had spoken to
each other over the phone were delighted to meet at last. Simone Davies
and another carer from Paris met us and we then made our way (being careful
not to lose anybody) to a lovely restaurant. There Dr. Florence Lebert
and other members of the Frontotemporal Group of Lille greeted us. Needless
to say we had a marvellous, delicious meal, lots of courses and lots of
wine (which we had to hide from one sufferer). There was a lot of cheerful
talk over lunch and it was great to see how well we all managed to communicate,
several of our group spoke really good French and several of their members
spoke English. After lunch we had a tour of Lille which is a delightful
city. A plan of our tour had been prepared by Dr. Lebert so we could recognise
where we were. We had a group photograph taken; all of us facing the camera
except one sufferer who
wanted his back only included. Dick Lingham took a lovely
lot of photos so we have a good record of our day in France. We just had
time to rush round the hypermarket before catching Eurostar home.
Everybody said how much they had enjoyed themselves and
how they had benefited from the day. I spoke to some members of the French
Group. They said they were impressed with our carers who had brought their
spouses on the trip and how beautifully they managed.
Many thanks to Lynn Goodfellow who arranged the day from
this end and to Florence Lebert and her group who arranged everything so
beautifully in Lille. We hope to arrange hospitality in England next
year.
KEW GARDENS.
Our annual picnic at Kew was a great success - the sun
shone. In fact it was a boiling hot day but we luckily found shade under
a huge tree right beside the lake. We had carers, sufferers and all the
Butler/Kellies, three generations worth. Jan Lock in particular enjoyed
seeing the children play. More people than last year turned up which was
very encouraging although we missed Yvonne Kelly who regularly came to
our picnics.
After our extensive lunch we walked round the gardens
and visited a hot house and then the deliciously cool display of fish and
fauna. Afterwards we went back and finished off our picnics. The picnic
again offered time for carers to talk to each other, the professionals
and my mother.
FUTURE PLANS
We are hoping to spend a few days at Pontins the 27th
September to 1st October 1999. The chalets are self-catering and cost £10.00
per head for two people in a chalet and £5.00 for four. Everybody
is welcome, particularly carers, sufferers and children. The idea was suggested
at Kew and quite a few of us said we would love to come. There are a lot
of facilities including a restaurant and fast food. Val Bywater has contacted
Pontins and they were very helpful indeed.
There are several possible venues so we haven’t decided
which one yet. If you
would like to know more and help make the decision on
where please phone
Val Bywater on 01483 562233.
A book at last!
During our trip to Lille I was delighted to meet Carl Cordonnier
who with Dr. Lebert have written a really good book on Alzheimer’s disease.
Carl took the photographs and Dr. Lebert wrote the text which is in English
and French. What is so important for our group is that they are now writing
a book on Frontotemporal dementia and Pick’s disease. It is at last a book,
which will be understandable by carers and professionals. It will help
enormously when trying to explain the
problems encountered in this disease to family, friends
and neighbours. I would be glad if we, the English branch, would be prepared
to allow sufferers to help by being photographed. The photographs would
of course be anonymous. Mr. and Mrs. Hunter (of Chairman fame) have agreed
to Hilary being included. She is so very young to have Pick’s disease,
it will show that the disease can affect people at any age. Please think
about it and if I contact you with an idea,
please think about how we have longed for such a book
to be written. When I approach anyone I will send them my copy of their
book on Alzheimer's disease so that the carer can see the quality of such
a book and how helpful it is.
Gossip Corner
When you read about the events above you may feel that
the Group is being positive and so it is. However Carol and I have been
hearing some heartbreaking stories recently to which there seem to be no
answers. It is a constant battle against ignorance, lack of facilities,
complicated family relationships, money and behavioural problems to name
but a few of the problems which are encountered. Problems affecting children
are particularly hard to bear. We listen, give practical advice and explanations
when we can but long to do more.
It is very encouraging that there have now been two meetings
dedicated to Frontotemporal dementia and Pick’s disease. Professor Martin
Rossor who is head of our Medical Committee spoke at the recent meeting
in Philadelphia. The objectives of this meeting are outlined and I spoke
to one of the organisers after the meeting and she definitely thought these
objectives had been met. Elaine Duncan kindly took the PDSG poster to the
meeting and said that there
was a lot of interest. We will all continue to help raise awareness.
Dr. Jerry Brown would like to know what questions you
have asked your GP to which he hasn’t an answer. Dr. Brown is a Consultant
Neurologist at Cambridge with a particular interest in Frontotemporal dementia
and Pick’s disease. His research identified the chromosome at fault in
the hereditary form of FLD. He is preparing information to give to General
Practitioners. We have already thought of the sad ones of “what is Pick’s
disease”, “what is the life expectancy", “how does FLD differ from Alzheimer’s
disease” but if you have any other rarer unanswered questions please let
me know and I will pass them on to Dr. Brown (via e-mail.). Many thanks.
Annette Kelly has a boy; Joseph and Clare Breen’s baby
is due any minute. Jill Walton has a boy Joshua, a brother for Jasmine
and Ella. I often visit Jill who lives near me although I admit that I
am not a great deal of help to her. I was scared she would have Joshua
in the front room - my midwifery skills are way out of date!
We were very pleased with our ultra posh newsletter and
would like to thank Peter Davis, Phoenix Photo Litho, Leicester for his
support and help.
Penelope Roques
Jan Greet - A Carer's Story
My wife, Jan, was a very fit healthy woman, who did karate
and could walk for miles, until after her 50th birthday in 1994 but, the
following year, she seemed a bit depressed at times and, early in 1996,
she went to the doctor several times as she was off-colour.
Things came to a head that March when her line-supervisor
at work - she was a Training Officer with Devon Training for Skills - told
her that they would have to give her a written warning if she
didn’t ‘buck up’. In April we went to see a consultant
neurologist at the local hospital who took me on one side and told me that
he thought something was seriously wrong - but no suggestion that it could
be dementia. I hadn’t even considered that as a possibility, as there was
no family history of it. After various psychological tests we were given
a preliminary diagnosis of ‘possible pre-senile dementia’, subsequently
confirmed by the National Neurological hospital a ‘Pick’s Disease?’ in
March 1997. That Spring was the last time she wrote in her diary, the last
time she drove a car, the last time she took herself to appointments, the
last time she went for a long walk. Her deterioration was rapid and relentless.
She continued to eat well in spite of a risk of choking but, by March 1998,
had said her last word. She was still reasonably well physically, but,
in August, virtually gave up eating, in spite of all my efforts to offer
her the right food and persuade her to eat it. She wasted away rapidly
that Autumn losing nearly a stone a month and becoming very weak, so the
only surprise about her death was that it happened so rapidly. She recovered
once in hospital from suspected pneumonia, but, after coming home again
on Christmas Eve, she faded away and died on 29th December.
Richard King
Post-Apocalypse
When someone you love dies, it hurts. Knowing they were going
to, and having in many ways lost them already doesn't make it any easier.
But however final losing someone to dementia may seem, death is not just
final emotionally and physically - you are brought immediately to grips
with the social implications. There are things you can do in advance to
help minimise the trauma - some I managed to do - others I wish I
had.
Make sure there is a will. If you have to get probate,
this document becomes public property. Keep it as simple as possible. Make
sure it is somewhere safe - preferably with someone not emotionally involved.
Get to know a friendly funeral director before you need
him. Ask at the hospital, the church, the crematorium. The right person can help.
Think about a post-mortem, if appropriate. You can
sign the relevant papers some time in advance, if they are ready and everyone knows about them.
If you don't want one (you may not have a choice!) be sure everyone knows.
If the deceased had a pension, tell the pension provider
as soon as possible. Any overpaid pension will be reclaimed. You don't have to do this
yourself - rope in a friend or colleague. Most pension companies keep paying
for a few months after death. Does yours? Can you raise funds if not?
Similarly, you must tell the bank/building society. Any
account in the sole name of the deceased will be frozen until things are sorted out - do you have
alternative arrangements?
The death has to be registered, and this has to be done
by a relative. The hospital/doctor will provide a death notification - make an appointment with
the Registrar, and take this along. Take a friend as well. Get extra copies of the death
certificate
- one for each pension or insurance company involved, and at least one extra. This may be
the first time you hear the horrible word widow(er).
Transfer as much property as possible out of the name
of the person with dementia. All their property has to be declared for
probate. If there is a house or savings, you need an up-to-date valuation.
Do you really want to see an estate agent/financial advisor immediately
after the funeral?
Get insurance policies assigned out of the estate if possible.
Probate costs more the bigger the estate, so does inheritance tax (though
between husband and wife none is payable). The value of the estate
also becomes public knowledge at probate.
If inheritance tax is payable, it must be paid before
the property is released. Be prepared to borrow money if necessary.
Accept all offers of help, especially with everyday
matters. If someone else will cook dinner, look after the children, drive
you around, make sandwiches for after the funeral or whatever, let them.
It will make them feel useful, and it will lighten your load.
Hope this isn't too depressing. I'm told life will improve
eventually, and I am slogging on in hope.
Helen Beaumont
The Next Young
Person's Day
Last years young person's day proved
to be a successful initiative (see Newsletter Vol. 4 Issue 3). Penelope
and I introduced two families to each other who were able to exchange thoughts
and ideas from their experiences of coping with a parent who has young
onset dementia.
We have nominally fixed a similar,
informal day for 26 August 1999 - venue to be arranged.
If any families are interested
please contact me as soon as possible for further details.
Dates - Reminder
We have been asked to reprint dates
for the future.
Meetings in London
The Old Boardroom, National Hospital
for Neurology and Neurosurgery, Queen Square, London WC1N 3BG. From 11.30-1.30
invited speaker, 1.30-2.30 lunch in The Swan pub, 2.30-4.30 your own experiences.
September 9th Providing Day
Care Facilities for FLD: Hazel Templeton.
December 9th The Experience
of Dementia: Clare Morris.
Meetings in Liverpool
The lounge of the Glaxo Neurological Centre, Norton Street, Liverpool. 2.30-4.30.
September 9th Local Support and
Services: Fiona Johnson.
December 8th (NB new date) Research:
TBA.
Carol Jennings
Philadelphia
Conference
This International, Multi-disiplinary
Conference on Pick’s Disease and Frontotemporal Dementia (FTD) was held
in Philadelphia during the month of May. The pupose of the conference was
to bring together internationaly recognised scientists and care-givers
for two days of discussion and exchange of new information about Pick’s
Disease and frontotemporal dementia.
As a result of attending this conference,
it was hoped the participants would be able to:
- Recognise the major early clinical
features that distinguish the Pick’s disease patient from patients with
Alzhiemer’s Disease and other types of dementia.
- Identify which diagnostic tests
are useful in establishing the clinical diagnosis of Pick’s disease.
- Consider how differences in
the menchanism of disease between Pick’s Disease and Alzheimer’s Disease.
- Describe the histopathological
features of Pick’s disease including the major components comprising the
Pick body and Pick cell.
- List the antibodies that can
be used to differentiate Pick’s Disease from other tauopathies.
- Discuss the relationship between
Pick’s Disease and other types of frontotemporal degeneration
- Explain differences in caregiver
issues that arise in Alzheimer’s Disease compared to Pick’s Disease.
- Describe management strategies
caregivers can utilise for common behavioural problems seen in patients
with Pick’s Disease.
- Define the genetic aspects of
frontotemporal degeneration linked to chromosome 17.
- Recognize clinical and neuropathological
features that help to distinguish patients with chromosome 17 abnormalities
from other types of frontotemporal degeneration and Alzheimer’s Disease.
Thanks to Alzheimer’s
Association Southeastern, Pennsylvania, for
organising the conference and allowing us to reproduce this article
Reorganisation - Special Request
Please would those in USA and Canada
wishing to register as members of the PDSG contact Doug Keck, our US secretary;
Those living in Europe should continue to contact Penlope if they wish
to join. See the front page of this website for more information on joining
the PDSG in your area.
Forthcoming Events
Penelope and Carol will be
‘on the road’ with their
‘Unusual Dementia Roadshow’
during the coming
months.
6 October : Preston
28 October : Burnley
If you would like to join us for
either of these events, further details can be obtained from either
Carol
or Penelope
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Contact Details
Carol Jennings
8 Brooksby Close
Oadby
Leicester
LE2 5AB
0116 271 1414
carol@pdsg.org.uk |
Penelope Roques
71 Myrtleside Close
Northwood
Middlesex
HA6 2XH
01923 822 700
frontotemp@AOL.com |
David Hunter
16 Grove Road
Upholland
Lancashire
WN8 0LM
01695 624 781
113234.2572@CompuServe.com |
Clare Morris
The Dementia Research Group
The National Hospital for Neurology and Neurosurgery
8-11 Queen Square
London
WC1N 3BG
Telephone: 0171 829 8772
Facsmile: 0171 209 0182
candid@dementia.ion.ucl.ac.uk |
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