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The
Pick's Disease Support Group Newsletter
For carers of frontotemporal dementia: Pick's Disease, Frontal Lobe Degeneration, Dementia with Lewy Bodies, Corticobasal Degeneration and Alcohol Related Dementia
 


February 2004 Volume 10 Issue 1

Contents

Anglo-French Link - Penelope Roques
Getting to Know your Regional Contacts
Tip from Peter Bartholomew
Another Television Programme
Pick's but no Choice - John Nicholas
Forthcoming Events
Contact Details

Anglo-French Link

We are most grateful to the Millennium Commission which allowed us to have a wonderful day in London.

Fifteen members of the Group Les degenerescences frontotemporales came from Lille by Eurostar and we met them at Waterloo. Their group included five people with FTD. There were at least 25 members of the PDSG (numbers fluctuated throughout the day) including five people with FTD. We had a wonderful time despite the appalling weather. I had promised to wear a large straw sunhat to be recognisable and it poured all day. Suivez le chapeau became a catchphrase and helped in getting the two groups interacting. The French group was led by Dr. Florence Lebert who has written a marvellous book on FTD.

We went to the London Eye and queuing in the rain was improved by the news that England had won the cup. The French were pleased the cup was in Europe. We filled two capsules on the Eye and it was great fun even if the visibility was not superb. We had a lovely lunch in a private room at the Archduke restaurant and the staff could not have been more helpful. It could have been a nightmare as it was meant to be self service but luckily the staff took pity on us. The buzz of people talking and making friends was inspiring. Some spoke English, some spoke French and most of us spoke Franglais. The total acceptance that we were all locked in the same problem was an immediate and common bond. Over lunch future collaborations were discussed.

After lunch we went on a boat trip up the river and learnt facts that I as a Londoner had never heard before. From time to time we lost the professionals or the carers but the people with FTD were wonderful and never got lost. We are going to Lille on March 13th for the day through the generosity of the Millennium Commission.

Please contact Penelope on 01297445488 if you would like to hear more about the trip. I know Les degenerescences frontotemporales are looking forward to showing us around Lille, French City of Culture this year.

Penelope Roques

Getting to know your Regional Contacts

At our meeting of Regional Contacts, held in October, we shared information about the situations in each area. Not all contacts were there. One notable absence was our Chairman and contact for Mersey and North West – David Hunter. He became a grandfather in the early hours of that morning so he was suitably excused and we all send our hearty congratulations! We are planning a similar meeting to be held at Penelope’s house for the Southern Contacts in the near future. This is an opportunity for you to find out more about your area:

Carole Ivey: being in London, receives many telephone calls. Hammersmith & Fulham have a Young Dementia Advisory Team with a Regional Carers’ Group covering all dementias – run by Sue Heiser. It has been suggested that it is extended to cater for clients up to 70 years old. Carole also has ‘get-togethers’ at her home twice a year. She is in touch with about 40 people.

Lyn Lingham: told us that Cambridge is fortunate in having a Neurology Consultant at Addenbrooks Hospital who runs a support group. Lyn receives an average of about one call per month.

Janet Carpenter: is listed as the Korsakoffs contact and has received about 20 calls; about two thirds concerning Korsakoffs, the remainder concerning Picks and other dementias. Most want information or one-off chat, but she remains in fairly regular contact with 4 or 5 carers.

Pat Coulson: has become a Contact fairly recently and has not had any calls yet. There is an active and supportive Alzheimer's Group in South Wales, but there is a lack of facilities for younger people.

Sister Ann Johnson: is a Community Nurse working with younger people with dementia, mainly in Shropshire (Shrewsbury) area. She uses the Alzheimer's Society for information about groups. She has received about 11 calls, mostly one-off’s, needing information. She has not found callers ready to be put in touch with each other.

Roy Jones: has received 8 calls and has on-going contact with one carer from Anglesey. Roy has personal experience of working through the Benefits ‘maze’ and can sometimes help in this area.

Ronald Carter: has received 4 – 5 calls. He is involved with various local and national Health related groups.

Helen Beaumont: is very involved with the Clive Project in Oxfordshire. She has received about 20 calls; some quick - requiring leaflets, some desperate to talk and calls can last an hour or so. There is not much research in Oxford into early-onset dementia. Finding suitable care is a big problem.

Janet Carpenter

Each one of these contacts is working hard to make things better in your area and I would like to take this opportunity to say a big THANK YOU to them for all that they do – not only receiving calls but promoting our work behind the scenes.

Carol Jennings

AGM 2004

Farmer’s Club, Whitehall London

You will see from the agenda above that we have a wonderful array of speakers for this event. For more information and to place reservations please phone Penelope. Price £25 including lunch.
PICK’S DISEASE SUPPORT GROUP
ANNUAL GENERAL MEETING - 10th March 2004.
09.30-10.30 Annual General Meeting
10.30-11.00 Coffee
11.00-11.30 Ethical issues in dementia
Katy Judd. Clinical Nurse Specialist. Dementia Research Unit, National Hospital for Neurology and Neurosurgery, Queen Square, London
11.30-12.15 What can a brain scan tell us?
Jenny Whitwell B.A. Clinical Research Fellow, Dementia Research Unit.
12.15-13.15 Questions
Dr. Nick Fox, MRC Clinician Scientist, Dementia Research Unit
13.15-14.15 Lunch
14.15-15.15 Helping People who have difficulty deciding for themselves
Dr. Jonathan Waite
15.15-15.45 Where to turn
Lynne Ramsay PDSG
15.45-16.15 Diagnosis Impossible
Mary Dawber, Carer, PDSG

Tip from Peter Bartholomew

Never mention dementia always talk about Pick's Disease or Neurodegenerative illness when applying for any kind of help. When you need services and are not getting them get an offspring, preferably male to plead your cause.

Another Television Programme

MY FAMILY

BBC2 is making a series about family life and we would like to hear from you. We are interested in family experiences of Picks Disease - as a carer, a parent, a child, a partner and personally. We hope to gain an insight into everyday lives and shed light on this rare disease.

We are at the early stages of research and would appreciate speaking to anyone who is happy to share their experiences of Picks Disease.

If interested please contact Alice and Fergus on 020 8752 7978 or alice.mayhall@bbc.co.uk.

Thank you for your time.

Pick’s, But No Choice

He came back from university, a degree achieved – with a life to change, With enthusiasm, spirits high, he looked towards a whole new range Of challenges, exciting times, the world to travel and friends to find. He was not aware of the grumbling gene, that slowed his brain and changed his mind.

The CT scans, the lumber tests, the frontal lobe, an incurable infliction That causes phrases to repeat, causes total loss of diction. He enjoyed driving, had cars of vintage, hood was down and he was free. But freedom ceases with this syndrome – Dignity Goes out the door, parents anguish every day, The love they hold, the nights not sleeping, Trying always to assist, worry never goes away.

The three of us, at home together, full time care requires devotion Which after years can take its toll, a ‘new home’ is found and with emotion. We lose the grip from our son’s hand, we miss his smile – we want him here, His place of care is quite a distance, unfortunately, there’s no place near.

It is always quiet the journey back. This disease is such a torture with three of us upon the rack. Though even in these advanced stages we find some sunshine out of the dark. Walking the downs at Barleston and kicking a ball round Longton Park. As we contemplate the future, our thoughts are short, not far ahead. For others, we hope, there may be a cure to prevent them from tracing the path we tread It is certain that few will understand the pain that we feel like a twisting knife.

John Nicholas

Forthcoming Events 
 
London: The Old Boardroom, National Hospital for Neurology and Neurosurgery, 
 Queen Square, London WC1N 3BG 
 11.30-13.00 Invited speaker 
 13.00-14.00 Lunch. 
 14.00-16.00 Your Own Experiences.

Dates :-  

  • 15th June 2004
  • 14th September 2004
  • 3rd December 2004
    •

North West Meetings: Please contact David Hunter - 01695 624 781  or david@pdsg.org.uk

Nottingham: Meetings are from 7.30pm at "The Goose at Gamston, Gamston, Nottingham

Dates :- 

  • 30th March 2004
  • 29th June 2004
  • 28th September 2004

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Contact Details

Carol Jennings, Counsellor
8 Brooksby Close
Oadby
Leicester
LE2 5AB
Tel : 0116 271 1414
carol@pdsg.org.uk		 Penelope Roques, Secretary
3 Fairfield Park,
Lyme Regis
DT7 3DS

Tel: 01297 445488
penelope@pdsg.org.uk

Regional Contacts

  • Scotland: Mrs. Eliza Simmonds 01764 661136
  • Cleveland, Cumbria, County Durham, Northumberland and Tyne and Wear: Ms Judith Watters 01670 367241
  • Humberside, North Yorkshire and West Yorkshire: Rev. Ronald Carter 01904 610237
  • Derbyshire, Leicestershire, Lincolnshire, Nottinghamshire and South Yorkshire: Ms Janet Carpenter 0116 2392913
  • Cheshire, Isle of Man, Lancashire, Manchester and Liverpool: Mr. David Hunter (Chairman) 01695 624781
  • Hereford & Worcester, West Midlands, Shropshire, Staffordshire and Warwickshire: Sister Ann Johnson 01743 492010
  • Cambridgeshire, Essex, Norfolk and Suffolk: Mrs. Lyn Lingham 01954 201609
  • Bedfordshire, Berkshire, Buckinghamshire, Hertfordshire, Northampton and Oxfordshire: Mrs. Helen Beaumont 01235 200360
  • London and Middlesex: Mrs. Carole Ivey 020 76030550
  • Dorset, Hampshire, Isle of Wight, Kent, Surrey, EastSussex, West Sussex and Wiltshire: Mrs. Jenny Mackie 01722 336352
  • Cornwall, Devon, Gloucestershire and Somerset: Mr. Richard King 01392 669238 (often away from home) can also be contacted on Mobile 0772 0049487
  • North Wales: Mr. Roy Jones 01248 351537
  • South Wales: Pat Coulson 01792 883684
    •

The articles in the PDSG newsletter do not necessarily express the views of editors

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