Contents
Kew Gardens
"Pick-nic"!
Clare Kelly
Our second Pick-nic and our second great day out, despite
the inclement weather. There was plenty to eat and drink, especially the
latter , thanks to Peter Thompson's generous donation of the wine. We all
enjoyed the walk around the gardens and the marine life centre. The day
was enjoyed by both the carers and the sufferers and we hope more will
join us next year.
PDSG Finances
Clare Kelly
We are now under the wing of the
National Hospital Development Foundation (NHDF) and are therefore able
to take advantage of their charity status. At our last meeting we discussed
covenants and now we have a charity number, we can ask people who wish
to make a regular donation to take out a covenant with the NHDF. This will
enable us to reclaim any tax already paid on these moneys.
We do not expect carers to donate
although we know many have friends and family who would like to.
Covenant forms will be available
at the next meeting, but for those unable to attend please contact Clare
Kelly on telephone number 0181 567 9173 and these will be forwarded to
you. If you have any further queries Clare Kelly will be glad to answer
them.
We now have a balance of £6000
and this has enabled us to employ Carol Jennings. She will work for four
hours a week to offer support and advice to families with young children
who have a parent who is a sufferer. Her address and telephone number are
at the end of the newsletter.
Dr Rossor is rumoured to be
running the London Marathon again next year. This again will boost our
funds as he will be looking for sponsors.
BITS AND PIECES.
I wrote a splendid article for the last Newsletter and
thought I had sent it to Kate to be included. She didn't publish it and
I thought perhaps it didn't meet the required editorial standards; however
the truth is that it got lost in my computer which being portable is arranged
differently to anyone else's. I explained that owing to my job I knew the
hospital inside out but owing to my surgery the hospital now knows me inside
out! I am making steady progress but still work four days a week which
I am afraid is why everything is still a little chaotic. Please be patient.
I was speaking to a carer last week who's daughter
is only 36 and in the final stages of Pick's disease. The very sad coverage
of the Princess of Wales' funeral was all the more poignant as she looked
at her daughter of the same age. The carer was particularly stressed not
only by her daughter's illness but by the fact that she was so alone, her
friends and her daughter's friends had disappeared. I wish we could do
more as a group to support isolated people who cannot attend meetings.
Perhaps we will be able to when we are a rich and powerful organisation.
The National Hospital for Neurology and Neurosurgery was one of the charities
supported by the Princess of Wales.
I am appalled at the number of cases of Pick's disease
and Frontal Lobe Dementia that I hear of. It was meant to be such a rare
group of diseases. An e-mail member told me that she was referred to the
PDSG from the Mayo Clinic in America. I hope you are as impressed as I
was. Richard Harvey will be presenting the results of his epidemiological
study soon and I understand it has got some surprising statistics. Richard
is going to write an article about his study and his next piece of research
which we will include in the next Newsletter.
It is very encouraging that the ADS is taking the
other dementias as the theme of the AGM and has published an article from
one of our carers in their Newsletter. Both David Hunter and Richard Harvey
are going to the AGM. Richard Harvey is speaking about the other dementias
as he is one of the new ADS Research Fellows.
Dr Martin Rossor is most grateful for the donations
he receives towards research into Pick's disease. This money will be used
for a specific project looking at Pick's disease. We would like to thank
Mr and Mrs Nicholson who gave donations in lieu of presents for their Ruby
Wedding Celebrations.
NEWS FLASH We have decided to defer the
AGM/Conference
until the New Year, probably February. This will enable Richard to present
the data from his research, which will be super. It will also allow us
to publish the programme and timing. I will start to organise it now so
that we are ready in good time.
Carol Jennings has moved and got a new telephone
number which is listed in big loud letters (see the end of the newsletter).
Peter Thompson has very kindly arranged a computer for her so we will be
well organised.
I hope to see some of you on the 8th October, 1997
at the National Hospital
Penelope
PS Jill and Richard Walton have a lovely new daughter
called Ella.
My Ron
by Aileen Harman
Where to begin? Five and a half years ago when Ron's personality
changed in a very obvious way? Or many years before that when his depression
set in? Whichever way you look at it, two and a half years ago Ron was
diagnosed as having Pick's disease and Paget's disease.
At first we were shocked by the news, although we as a
family knew Ron had changed. From being an introvert he became an extrovert
- which from my point of view five years ago was an exhausting experience!
He was disruptive at committee meetings, disruptive at evening classes
and generally a pain in the neck! Mind you he did become very cheerful
and happy, totally uninhibited and very amusing at parties or on holiday.
This wasn't my Ron - the "other" Ron was quiet, introvert,
shy and extremely intelligent with an extremely high IQ. He loved walking,
climbing and hand-gliding.
In his early years with Pick's he still walked long distances,
but his other hobbies went by the board, and for the last six months the
walking is down to a mile or so. His walking days are over; his legs are
getting weaker as are his arms. Climbing the stairs to bed at night is
difficult, but he likes the exercise.
Ron has just discovered poetry! His library books, which
I choose, are a mixture of poets and he enjoys them all. He just picks
at books so poetry books are just the thing he can pick up and put down
at leisure. Ron is in bed at whilst I write this missive as he likes to
go to bed at 9.50pm precisely!! Very punctual! This gives me time to relax
with a book or my craft work for an hour or so.
In all this dreadful time I have been helped by our two
sons (both in their early thirties) and their friends, plus of course both
sides of the family. My Mother, now eighty, is a tower of strength. I have
also in the past eighteen months had counselling and guidance by my Community
Psychiatric Nurse. He visits every few weeks, more often when needed. He
says he only comes for my home-made fruit cake!! He is very much a friend
to us both and very supportive. I am so lucky to have all these people,
plus very dear local friends who have stayed by us through all the trauma.
On a serious note, I know that many carers feel lonely
and abandoned, and that no one cares. Having the Pick's Disease Support
Group and the newsletter regularly helps them, I hope, to realise that
they are not alone or abandoned. Just pick up the phone and call another carer. A chat on the phone is very therapeutic, at least I find it so.
Ron celebrates his 70th birthday shortly and
although I don't usually look ahead-like everyone else I just live from
day to day-I am looking forward to organising his party, when many family
and friends will join us for the evening.
Being 13 years younger than Ron I suppose I cope a little
easier than if I was his age, but I still have my down days like all carers.
I have been through my period of grieving for the husband I have lost,
but am proud and happy to look after this man who has been my whole world
for 35 years.
The Changing Role
Mrs Joan Bradley
I didn't realise when all the problems
started just what sort of changes Norman's illness would make to the lives
of myself and my family. My role changed from being a wife, friend and
lover to being the "mother" of a large, strong six year-old.
It started changing in little ways;
to start with, sleeping in separate beds and not having the closeness of
my best friend. He became distant, not wanting to be near me and gradually
I had to remind him to do the jobs around the house while I was at work,
leaving him lists as I would a child, because he wouldn't remember otherwise.
Trying to cope with the gradual change
in him, his concept of life and his behaviour patterns I began to chastise
when finding money missing or when he did something absolutely silly. Being
tolerant of his repetitive behaviour was very difficult. Eventually we
even stopped kissing.
All this time I was being told "there's
nothing wrong with him - just depression -put him on happy pills", and
this was after I had had to be abusive to even get someone to listen to
me. I was also told I was to blame and it was all my fault. Eventually
they listened when I said he was no better. We had attended the funeral
of a very dear friend and he behaved as if it was a party. "Oh" they said
"we'll do some blood tests and a scan". "Yes! We've found something - off
to Southampton for a cure!"
By now his eating habits had become
decidedly odd, eating food he would never have touched before, stealing
food in the night and hiding the empty packets. I'm also now having to
remind him to change his clothes and to sneak away his dirty ones for washing.
We are going through the closing up and locking of the house stage; in
the hot summer all the windows would be shut and doors locked. He would
act like a naughty boy and the way I talked to him changed. I reverted
to my "mother" voice and talked to him and tried to reason and bribe him
like I had the children when they were young.
We still did not get a diagnosis and
while he was in hospital he took to foraging in the rubbish bins for food.
Eventually Norman was sectioned at the local psychiatric hospital for his
own safety. He was losing concentration and wandering all over the village
heedless of the traffic. He refused to wash or shave and I had to go in
and bribe him with sweets to get him to do the simple everyday things,
yet when you could get his attention for five minutes he could actually
talk about some of his past experiences, especially those in the Navy.
By now I had become totally the mother
figure - he still knew me as his wife but treated me more like a second
mother. Eventually we went to London to see the Professor and at last were
told the truth - a 95% chance of frontal lobe dementia. He would have to
go in as an in-patient to confirm this, but at last someone knew what they
were seeing and dealing with.
Norman has now lost the inhibitions
of adulthood and sees and reacts as a child. In the environment that he
is in this type of behaviour is semi acceptable, but to the uninitiated
it is embarrassing and their attitude to him can be very hurtful - not
to him (he's not aware) but for myself and my family on his behalf. The
children, although 19 & 20 years of age have lost a loving, dependable
father; the person who they could go to for advice is not there any more
and they now have a rather large younger " brother". They are finding it
very hard to cope with the change.
There Can Be a Life After
Caring by Brian Coop.
I have written two previous articles for
the PDSG Newsletter, namely `Kathleen - My First Wife' and `Kathleen -Time
To Let Go'. This will be my third and, I believe, my last.
When Kathleen went into full-time nursing
care on 21st October 1996,it created a huge vacuum in my life. I had tried
going on holiday alone, on previous occasions, when Kathleen was in respite
care, but soon became bored. We had always visited Tenerife in February
at our timeshare and over the years had befriended another couple, Sylvia
and Eric, who owned a timeshare on the same complex.
Unfortunately, Eric started with Alzheimer's
Disease about the same time as Kathleen started with Pick's and we both
watched our partners deteriorate over the years. Eric too is now in an
EMI home full time. This year Sylvia and I went together to Tenerife and
enjoyed each others company. We each had our own apartments but it was
fun to have someone to dine out with and to pass the time of day by the
pool. We went on holiday again to the Caribbean in April and it was there
we realised that sometime in the future we would finish up living together.
We planned to return to the Caribbean in June but, regrettably, I suffered
a heart attack a couple of days before departing and finished up in a coronary
care unit at a local hospital. I had a second attack before being discharged
from hospital on 1st July.
Sylvia did not hesitate and stayed
at my home all the time I was in hospital, visiting me for eight or nine
hours each day I was there. Her home was quite a distance away from the
hospital so it was more convenient to stay at mine. On discharge we decided
to live together. We had talked about this in vague terms previously but
my hospitalisation brought things forward somewhat. At this time we spend
about a week at each others home but eventually we will sell one or both
when we have decided where we want to live.
We both have two married children and
all four seem to understand and approve of the situation. Neither of our
spouses know us any more so nobody will get hurt. We both go regularly
together to see Kathleen and Eric and ensure they are being properly cared
for. All the staff at both homes are aware, as Sylvia and I feel we have
nothing to hide. Everyone we have met so far thinks the arrangement is
great and all wish us well. People really are very understanding.
Perhaps this article will give hope
to anyone finding themselves in a similar situation to us. I have to say
that my heart attacks are behind me now and I am recovering well and, to
be truthful, I have not felt this good for years and I know Sylvia feels
exactly the same. We are good for each other and call it our `Quality Time'.
May I thank everybody I have met at
the PDSG meetings, and my Internet contacts, for their help and advice
about how to cope with caring at home. This proved to be invaluable. Having
someone at home now to talk to, that understands things, has made all the
difference and we both feel that we should spend as much of our time caring
for one another.
European Concerted
Action on Pick's Disease (ECAPD)
I would like to introduce myself
and update you on the project. My name is Suzie Barker, I joined the Dementia
Research Group in June this year, as a Research Co-ordinator. My main responsibility
is the ECAPD project.
Many of you will already know
about the ECAPD study which has been mentioned in previous issues. The
study involves several partners throughout Europe, and is co-ordinated
by the Dementia Research Group at the National Hospital.
The project has been running
for some time now, and information has begun to come in from the various
partners involved. This followed a meeting of investigators held last November,
when decisions were made about the basis on which information about patients
with Pick's would be gathered. As you are no doubt aware there has been
some lack of consistency in the diagnosis of Pick's. One of the aims of
this piece of research is to develop standardised diagnostic criteria for
Pick's disease.
At this point in the research
it is not possible to report on any specific findings. The project is the
fairly early stages, and the information we have has not yet been analysed.
We are due to have a meeting
of all participants later this year in Lille, France. This meeting will
offer an opportunity for the investigators to review the information already
obtained.
I will be attending this meeting
and will be involved in the analysis of the data from all participating centres, and will keep you informed of any developments in the research
via the PDSG newsletter.
If you have access to the Internet
further information about the project is available on the World WideWeb
via the Dementia Research Group Homepage. The website address is http://dementia.ion.ucl.ac.uk/
Information Sheets
We now have various information sheets available on:
-
Pick's Disease - An Explanation
-
Essential Information for Caregivers
-
Recent Advances in the Genetics of Familial Alzheimer's Disease
-
Lewy Body Dementia
-
Primary Progressive Aphasia - What is it?
-
Swallowing Problems That May Be Experienced by People Suffering
From Dementia
These can all be accessed via the World Wide Web. The address
is:
(http://dementia.ion.ucl.ac.uk/candid/factsheets/)
Some have also been sent out with previous editions of
the PDSG newsletter.
However, if you don't have access to the WWW and you or
somebody you know would like more copies please send an SAE to the
Dementia Research Group stating clearly which one(s) you would like and
we will send you them.
Diary Dates: PDSG Meetings
The next PDSG meeting will be held on the 8th
of October in the usual room, Victor Horsley seminar room in the main hospital
at Queen Square. Between 11am and 1pm there will be the opportunity for
people to meet up informally and the formal meeting will take place between
2pm and 4pm.
There will be a meeting of the PDSG Committee at the Hospital
on the 5th of November at 4pm in the Dementia Research Group
offices (8-11 Queen Square, opposite the main hospital).
Carol Jennings, PDSG Counsellor
8 Brooksby Close
OADBY
Leicester
LE2 5AB.
Telephone 0116 2110416
PLEASE NOTE if you are receiving the newsletter by snail mail and
can access it through the WWW please could you let us know your e-mail
address which would save us postage.
If you have written an article, case study, or anecdote on any aspect
of caring, or have any comments on the news letter, please send it to:
Penelope
Roques,
The Pick's Disease Support Group,
The National Hospital for Neurology and Neurosurgery,
8-11 Queen Square
LONDON
WC1N 3BG
Tel: 0171 829 8772
Fax: 0171 209 0182
E-mail: candid@dementia.ion.ucl.ac.uk
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