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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
 



May
2001 Volume 7 Issue 2

Contents

Editorial, Penelope Roques
Our Anniversary, David Pritchard
Nottingham & London Regional Get Togethers, Carol Jennings
Pick's & Frontal Lobe Degeneration Obsessions
, Penelope Roques
A Message from the Chairman, David Hunter
Spreading the Word
Contact Details
Forthcoming Events

Editorial

Annual General Meeting, March 7 2001, at Nottingham University Campus

The Official Business of the AGM went through smoothly. The Chairman thanked everyone who has been such a support throughout the year. In particular David mentioned Peter Davis who prints our beautifully presented newsletters and John Jennings who is our editor. David thanked Graham Ward for organising our Web pages Ricky Manders for looking after the database and Peter Thompson our treasurer. He also thanked everybody who had been so supportive during his daughter Hilary’s illness.

Under any other business Lynn Goodfellow proposed starting a database of nursing homes able to cope with real frontal lobe behaviour. Carol Ivey suggested drawing up guidelines for our contact people. Both ideas were accepted.

We then had a day of wonderful presentations. Our first speaker Dr. Rob Layfield told us about our rogue protein tau (we all have tau but an abnormal form causes disease).

Dr. Layfield has very kindly agreed to summarise his talk for our next newsletter. Maggie Rose from the Progressive Supranuclear Palsy group told us about Advocacy and Support. It was a great presentation and we tried to kidnap her but it didn’t work. In the afternoon we had our understanding of Alcohol Related Brain Injury broadened by Tony Biggs and Russell Elleswei. The afternoon closed with a moving account by Janet Carpenter of the problems encountered in caring for her brother who has ARD. It was a superb meeting and we are very grateful indeed to our speakers.

The meetings of the PDSG are a way of offering mutual support as well as getting information and research updates. However we always manage to laugh a lot and David Pritchard told the following story which I insisted he wrote down for the newsletter. Please imagine it told with a lovely accent from Northern Ireland.

Penelope


Our Anniversary

This was our twenty seventh wedding anniversary and yes tinged with sadness. I knew Val would not remember it and yes I had been guilty of thinking what was the point.

Still, encouraged by our good friends Shirley and Barry to celebrate our anniversary I had chosen a pub. Not just any pub mind you, but one in the midst of the Hertfordshire countryside, a listed building renowned for good food and fine ales. Barry certainly warmed to the place as he stood beside me admiring the selection of beers on offer.

Shirley came over and whispered ‘I think we shall be okay’.

I had left Val with Shirley at the menu blackboard with relief I had spotted amongst the extensive menu ‘Scampi’ advertised and I knew this is what she would choose. Mind you she would still take at least five minutes choosing what to have. ‘With a side salad, no dressing and definitely no mayonnaise’. Yes I knew that order off by heart.

Shirley had gone to find us a table and once seated Barry had joined her carefully carrying their drinks, I was left at the bar reminiscing thinking of previous anniversaries when suddenly I realised Val was missing...

Shirley and Barry are very good with Val and I trust them but try as I may I could not get their attention at that point. I looked around and simply could not see her and the bar man was having trouble with the till, Shirley and Barry were engrossed in conversation and yes I was now beginning to panic.

It was with such relief when I heard Val’s distinctive cough, I turned and there she was just a few steps away directly behind me chatting away to a couple seated at a table. Thankfully the bar man was at last making progress, the manager had been called to fix the till and very soon I received an apology for the delay along with my change.

‘Now to rescue that poor couple from my wife’ I thought.

Val could always chat to anyone and most would find it interesting, Val still loves to chat but of late what she says is not so interesting and tends to be very repetitive.

I walked over and gave Val her glass of wine thinking I would suggest we join Shirley and Barry and order our meal as the restaurant was getting busy.

I was rather taken back when just as I handed Val her glass of wine the man seated at the table spoke. ‘Hello David. As soon as you walked in I recognised you, after all these years.’

I now looked at the lady seated at the table. Yes they did look a little familiar, but as yet I could not place them. It was a role reversal to say the least. Try as I may I could not put a name to the couple but gradually as the conversation progressed I realised the couple had been to our house and knew about all our cats. We had been registered cat breeders for many years. I assumed they must have bought one of our cats. We had bred a lot of kittens over many years. Even at the best of times it is not easy to remember people’s names or their cat’s.

Thankfully Val was in good form and talked about our famous stud cats etc. The only clue to her condition was when asked by the couple when the cat died and Val would turn to me to give the answer.

We left the couple when their meal arrived. I was relieved things had gone so well but still puzzled as to what their names were. Yes I could remember the couple and even the kitten and the adult cat that they had bought. Yes the man did look different with white hair. Mind you I had last seen him at least twelve years ago. We joined Shirley and Harry at our table and ordered our meal. The meal arrived and we were soon enjoying our food and pleasant conversation when Val interrupted the talking ‘Merll and John’. That’s all she said then continued to eat. I was well impressed – she had remembered the couple’s names.

We finished our meal and Val with her sweet tooth was more than keen to discover what delights were on offer for desert. I was seated with my back to the wall in the corner and Shirley very kindly offered to go and order.

Shirley pushed back her chair and stood up and Val joined her announcing 'Let me come and help’. I looked at Shirley, who nodded.

It was then I had a brain wave and called to Val. I took out my wallet as Shirley and Val came back to our table. ‘How about buying...’ I had forgotten the couple’s name that we had spoken to and gestured up the restaurant to where they were seated behind a wall. ‘You know the couple we spoke to when we came in’. Val looked up the restaurant then looked at me puzzled. ‘You know the couple’. I pointed at the wall just as two elderly ladies walked in. Val looked at me blankly, took my money and turned to follow Shirley.

I just could not believe what happened next. The two old ladies had come to sit at the table next to ours and were greeted by Val, ‘Can I buy you both a drink?’

‘No Val’ I shouted.

The two old ladies looked at Val then at me. All three looked puzzled as well they might and at this point I lost it. I offer no excuses. I got a fit of the giggles and laughed ‘til my sides hurt.

Of course I felt bad. Val was totally confused and had sat down at a loss as to what had happened. Try as I may it took me a while to compose myself. Barry and I eventually made our way up the restaurant and ordered our next course.

Soon Val was eating her desert with relish, the incident now forgotten. It was a good example of Frontal Lobe Dementia – how my wife could remember the names of the couple from many years back but could not remember having spoken to them that very evening.

It proved a good evening and yes it was also a good example of what my wife has had to put up with for the last twenty-seven years. I admit I have a warped sense of humour. It has got me this far and I feel that if ever I lose my sense of humour that will be the time I will give up.

David Pritchard


Nottingham & London Regional Get Togethers

Often carers have said how they find it hard to attend meetings because of the distance they would have to travel or because both London and Liverpool hold their meetings during the day. Of course it’s impossible to cater for everyone but Penelope made the excellent suggestion at the AGM that we should try to have more regional get togethers.

I was certainly eager to follow that up and we are now going to have PDSG meetings in Nottingham.(see page 1).

Hopefully if you are in the Trent region you will have received information but if you haven’t or are outside the area but would still like to attend do contact me for more details on 0116 2711 414. Also Carole Ivey is hoping to have a regional meeting at her home in London W14 0SW on June 2nd. Anyone interested can contact her on 0207 6030550.

Carol Jennings.


A-Z of Pick’s & Frontal Lobe Degeneration Obsessions

A – Alcohol: increase in consumption.
B – Buying: anything and everything but particularly soft toys.
C – Children: talking to children can cause embarrassment.
D – Disinhibition: takes many forms, loss of social graces are common.
E – Eating: changes in taste often occur, sweet things being preferred.
H – Hoarding refusing to throw anything away.
H – Hugging: sometimes anybody and everybody.
H – Humming: constantly humming, often on one note. The distraction of music, perhaps through headphones, sometimes helps.
J – Jealousy: suspicion about anybody or everybody.
K – Kissing: sometimes anybody or everybody.
K –  Kleptomania: acquiring things from shops (shoplifting to the healthy).
M – Money: it may unaccountably disappear, Enduring Power of Attorney recommended.
P - Picking up: almost anything but particularly little bits on carpets.
R - Religion: over and above previous interest.
S – Sex: some very sad changes often occur in sexual habits.
S – Switches: obsessively switching things off, even the fridge.
T –Time: strict adherence to routines, eating, walking, sleeping etc must be carried out at the designated time.
T – Tiredness: may insist in staying in bed or having fixed rest periods.
W – Walking: long walks, often the same route at the same time of day.
ZZZ – Sleeping: often spending long periods in bed.

Penelope Roques.


A Message from the Chairman - London Marathon Update

It is my pleasant duty to inform you of the remarkable efforts of Ian Fisher in the London Marathon on 22nd April 2001.

Ian finished in 27th position in a time of 2hrs. 21min. 52 secs and was the10th British runner to cross the line and this was an improvement of 7 places on last year.

Ian looked in remarkable condition when he crossed the line but it was then we found out that he lost his first big toe nail at 7 miles and the other one later in the race.

He was helped along by the knowledge that he was running for the Pick's Disease Support Group and did not want to let anyone down.

Well done Ian!

If you did not manage to organise sponsorship before the race but would like to make a contribution please send any donations to: Rev. Ronald Carter, 5 Grenwich Close, Rawcliffe Manor, York Y03 6WN.

Kind Regards,
David Hunter


Spreading the Word

One of our main priorities is to raise awareness of our group of dementias. We want as many people as possible to know what we’re about.

As mentioned in our last newsletter we need to encourage consultants to be involved in our growing network. We are pleased to report that this is happening!

More and more professionals are asking to be included on our database and they are in turn ‘spreading the word’.

Dr Robert Lawrence, Consultant Psychiatrist, leads a research group at St George’s hospital Medical School, London and Penelope has written about the PDSG for his newsletter. This will be circulated to local and regional psychogeriatricians and Social Services.

We have received a letter from Dr R. A. H. Paterson, Consultant Psychiatrist with the Community Mental Health Team in Milton Keynes, thanking us for the newsletters and saying how interesting and informative he has found them.

Meanwhile we are also in the process of linking with Contact a Family – a national charity which, as its name suggests, supports families dealing with any disability or special need. They are launching their ‘Directory of Specific Conditions and Rarer Disorders’ later this year and we will be included in this book. It will have a short description of FTD and our meetings, web site and contact details. It’s good to know that our voice is being heard.


Forthcoming Events 
 
London: The Old Boardroom, National Hospital for Neurology and Neurosurgery, 
Queen Square, London EC1A 3BG 
11.30-13.30 Invited speaker 
13.30-14.30 Lunch. 
14.30-16.30 Your Own Experiences.
Dates :-  
  • 6th June 2001
  • 7th Sept 2001
  • 6th Dec 2001


Liverpool: Glaxo Neurological Centre, Norton Street, Liverpool, L3 8LR 
Meetings are from 14.30 to 16.30. 
Dates :- 

  • 7th June 2001
  • 6th Sept 2001
  • 6th Dec. 2001 

Nottingham (See above)

Meetings are from 7.30pm in Gamston
Invited Speakers: Dr Rob Layfield, Ms Maggie Rose Mr Tony Biggs, Mr Russell Elleswei
Dates :- 

  • 31st July 2001 - Social Evening. Venue: The Goose at Gamston
  • 30th Oct 2001 - Invited Speaker. Venue: Lings Bar House

Kew Gardens PickNick

Wednesday 23rd May, 2001. A picnic for people with dementia, carers and professionals. Meet at the main gates at 12.00. If you are late come and find us beside the lake. For further information please contact Clare Breen 0208 567 9173.


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. Lisa 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
  • Wales: Mr. Roy Jones 01248 351537
 

Short Breaks
Mrs Val Bywater Tel: 0148 356 2233 and Mrs Lynn Goodfellow Tel: 020 8788 7861
 

BlueBirds Nursing Home
Bluebirds Nursing Home will be opening on the 14th May. The home has been designed with the full input of Buckinghamshire Registration Unit and The Alzheimer's Society and meets all the requirements of 'Fit for the Future' It is situated in the heart of Shenley Lodge, a local community in Milton Keynes with easy access to shops, public transport, road links to the East and West , the A5 and Ml, and main line train services.

Bluebirds Nursing Home provides a safe and homely environment with skilled staff providing 24 hour nursing care and support for people aged 40 years onwards, with a diagnosis of any form of dementia and complex health care needs. 

The home is single storey and purpose built with 20 single bedrooms and 2 double rooms (for couples), all with en suite facilities, specially designed day lounges and gardens landscaped to suit a variety of physical and mental health needs. 

The care team, includes first class nurses and carers and an activities co-ordinator to provide a fulfilling and interesting day.

Bluebirds Nursing Home also provides care and support to people still living at home by working in partnership with Community Support Teams and offering Day and/or Night care and Respite care.

Please contact Jan Flawn at Churchend Farm House Kensworth Beds LU6 3RA or telephone 01582 873230 mobile 07879454091 for more information or a brochure.

 

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


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