Contents
Please note that with immediate effect, CANDID now has a
direct line telephone number. This means that you will no longer have to
go through the National Hospital switchboard to contact Penelope and therefore
it should be quicker and easier to call her. The new number is: 0171
829 8772. Please make a note of this change on any CANDID or PDSG leaflets
that you have as well, and draw it to those people's attention who may
not see this newsletter.
Present: Ron Isaacs, Peter Thompson, David Hunter, Penelope
Roques, Paul Meyer.
Apologies: Jill Walton, Kate Homan.
Minutes from the last Committee Meeting were read and
accepted.
The Committee welcomed David Hunter as the new Chairman
and Brian Coop and Peter Thompson as new Committee Members. Resignations
were accepted from Elaine McCusker and Betty Bryant and we would like to
thank them for their vital role in getting the PDSG founded.
Charity Status: Mr. Paul Meyer outlined the benefits of
being adopted by a larger charity as we have not got sufficient funds to
go it alone. These benefits include relief on VAT for essential equipment
and tax concessions on donations and covenants. It was agreed that the
PDSG would come under the auspices of the National Hospital Development
Foundation, which is the charity arm of the National Hospital. When the
transfer of funds has been completed we will have access to their charity
number. The role of our treasurers will be the same but the account will
now be held in the Royal Bank of Scotland.
At the last PDSG Meeting in London the Group voted in
favour of employing Carol Jennings 4 hours per week to give support to
carers of sufferers of our group of illnesses. The Committee wrote to Carol
Jennings offering her the post of counsellor with special emphasis on supporting
carers with young children.
Mr. Peter Thompson has kindly agreed to start fund raising
for a computer for Carol. Access to E-Mail will be arranged through the
Dementia Research Group at the National Hospital.
The picnic at Kew Gardens on 25th June was
discussed and details confirmed.
Fund-raising was discussed. Mrs Gill will be contacted
to help with plans to fund-raise now that we have been accepted under the
auspices of the NHDF.
The next Committee Meeting is scheduled for November 5th,
1997.
Dear friends,
I would like to take this opportunity to introduce myself.
I am 53 years old, married to Jean and we have three daughters,
Alison, Hilary and Rachel. Unfortunately Hilary, who is 28 years old, suffers
from Pick's disease.
I look forward to the challenge of being chairman of the
Pick's Disease Support Group and aim to continue the good work started
by others. You will probably be aware that the Alzheimer's Disease Society
has withdrawn the funding for the Co-ordinator for the Younger Person with
Dementia, so we will have to work even harder to raise the profile of our
support group.
Now that we have been adopted by The National Hospital
Development Foundation, the future looks very promising and hopefully we
can take our group from strength to strength.
For my part I will continue to speak at meetings and conferences
and by spreading the word, I aim to make people aware of what, as a group,
we represent. During National Carers Week (9-15 June 1997) I hope to take
part in a Radio 2 discussion programme concerning carers in our society
today.
I will be attending the London meeting of the PDSG on
the 16th July and look forward to meeting many new friends.
Kind regards
David Hunter
Dean Nook
16 Grove Road
Up Holland
Nr Wigan
Lancashire
WN8 0LH
Carol has worked as a teacher and then as co-ordinator of the younger persons
with dementia project with the Alzheimer's Disease Society. Carol has also
been connected with the Dementia Research Group at the National Hospital
for over 10 years and it was in her family that the first gene for Alzheimer's
was found. Her area of speciality will be supporting carers who have young
children (Carol is a mother herself) although anyone can contact her just
to talk. Carol lives in Nottingham but will be moving to Leicester in August.
Her address and telephone number are:Carol
Jennings
8 Brooksby Close
Oadby
Leicester
LE2 5AB
Tel: 0116 271 2404
In the first instance we ask you to telephone Carol as that way we will
be contributing directly to the telephone bill rather than it coming out
of the Funds. Carol will monitor the number of calls she receives and when
and we may arrange fixed times for calls at a later date.
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.
Meetings
for Carers, Ex-Carers, Friends and Professionals
Diary dates
Picnic at Kew Gardens - 25th June 1997
Following our successful picnic at Kew Gardens last year we are having
another one this year. Mala Tu is kindly organising us again so that we
qualify as a Group for entrance without charge.
Meeting Point
We meet at 12.00 at the Main Gate which is on Kew Green, near Kew Bridge
and St. Anne's Church.
Parking
There is a semi-circular area beside the Main Gate where passengers may
safely disembark. There are three Disabled parking spaces nearby, but if
these are full, you can park in the car park beside Brentford Gate (sign
posted off Kew Green via Ferry Road, also without charge.
Late Arrivals
If anyone misses the group we will leave a message at the Main Gate as
to where we will be picnicking.
Programme
After picnicking we break into groups and enjoy the gardens, usually meeting
up again at 3.30pm in the tea cafeteria.
Rumour
We have had a kind offer that wine will be provided by a member so bring
suitable drinking glasses.
The next PDSG Meetings
The next PDSG meeting in London will take place on 16th
July 1997 in the Victor Horsley Seminar Room at the National Hospital for
Neurology and Neurosurgery.
The next PDSG meeting at The Glaxo Neurological Centre
in Liverpool will take place on the 23rd of July at 2pm.
Mrs Joan Frost sent us these two poems:
KAHIL GIBRAN ON JOY AND SORROW
Then a woman said, Speak to us of JOY and SORROW.
And he answered:
Your joy is your sorrow unmasked.
And the selfsame well from which your laughter rises was oftentimes
filled with tears.
And how else can it be?
The deeper that sorrow carves into your being, the more joy you can
contain.
Is not the cup that holds your wine the very cup that was burned in
the potter's oven?
And is not the lute that soothes your spirit the very wood that was
hollowed with knives?
When you are joyous, look deep into your heart and you shall find it
is only that which has given you sorrow that is giving you joy.
When you are sorrowful, look again in your heart, and you shall see
that in truth you are weeping for that which has been your delight.
Some of you say, "Joy is greater than sorrow," and others say, "Nay,
sorrow is the greater."
But I say unto you, they are inseparable.
Together they come, and when one sits alone with you at your board,
remember that the other is asleep upon your bed.
Verily you are suspended like scales between your sorrow and your joy.
Only when you are empty are you at standstill and balanced.
When the treasure-keeper lifts you to weigh his gold and silver, needs
must your joy or your sorrow rise or fall.
POEM (SHEILA CASSIDY BOOK.)
And so we must begin to live again,
We of the damaged bodies and assaulted minds,
Starting from scratch with the rubble of our lives
And picking up the dust of dreams once dreamt.
And we stand here naked in our vulnerability,
Proud of starting over, fighting back,
But full of weak humility
At the awesomeness of the task.
We, without a future,
Safe, defined, delivered,
Now salute you God,
Knowing that nothing is safe,
Secure, inviolable here
Except You,
And even that eludes our minds at times.
And we hate you
And we love you,
And our anger is as strong as our pain,
Our grief is as deep as oceans
And our need as great as mountains.
So, as we take our first few steps forward,
Into the abyss of the future,
We would pray for Courage to go to places for the first time
And just be there,
Courage to become what we have not been before
And accept it.
And Bravery to look deep
Within our souls to find new ways.
We did not want it easy God,
But we did not contemplate
That it would be quite this hard, this long, this lonely.
So, if we are to be turned inside out,
And upside down,
With even our pockets shaken
Just to check what's rattling and left behind,
We pray that you will keep your faith with us
And we with you,
Holding our hands as we weep,
Giving us strength to continue,
And showing us beacons along the way to becoming new.
We are not fighting you God,
Even if it feels like it
But we need your help and company as we struggle on,
Fighting back and starting over.
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
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