Contents

Editorial - Penelope Roques
Some little known facts about Pick's Disease - Gerri Parlby
Experience with Brain Donation - Duncan Hutchison
AGM - Forthcoming Events
Contact Details

Editorial

We often get asked about occupations for people with FTD.  When Dick and Lyn Lingham’s Newfoundland died Lyn acquired three hens and Dick is very fond of his two new guinea pigs, Merlot and Plonk. Edith is a very fine French hen who is much friendlier since they politely say “bonjour Edith” every morning. Tikka is a lovely red colour.  The third has more than enough to say for herself, must be involved in everything, loves supervising, is very chatty – and is called Penelope.

Our newly designed web pages are coming on a treat, and we are most grateful to Geri Parlby for arranging it for us through her brother’s firm.  It is exciting to have professional help and they will be arranged in such a way that updating, minor changes, organising and making links will be much simpler.  My friend Roberto Salina who lives near Milan has agreed to take on managing the pages, he has recently retired from IBM so I press ganged him!  Graham Ward is continuing to manage the forums but as he has four daughters and divides his time between Belgium and Russia he has more than enough to do. We are so very grateful to Graham, Geri and Roberto.  I may be able to cluck, chat and supervise but web page management is too demanding for my hen sized brain.

We are looking forward to the Meeting on the 18^th March after the AGM.  I am most grateful to Carol for arranging it all.  Next year she can look forward to the Meeting whilst I have the worry of arranging it.  We both panic that no-one will come and that we will be left with eminent speakers and an audience of two; Carol and myself.  Please show support by coming if you can. By booking early you can calm our nerves.

The date for the Anglo-French Link has now been confirmed as Saturday 9^th April. Do contact Val by E-mail (valbywater@tiscali.co.uk) or telephone on 01483 562 233 for further details.

Up until now we have managed to fund the PDSG but soon it may be necessary to work a bit harder.  My local Church has a retiring collection once a year for the PDSG and I know a carer who’s local Church helps similarly.  Please involve your local community in fund raising if you can.

Please send us articles and comments for the Newsletter, by writing you can ensure the newsletter is relevant to your needs.  What concerns you as a carer will certainly be pertinent to other carers.  Carol and I are professionals and may have a different perspective.

Love to all. 

Penelope

Some little known facts about Pick’s Disease

In an earlier life I was a journalist.  I wrote about my Mum's vascular dementia for the Telegraph when she was first diagnosed.  I am now confronted by my once handsome and brilliant brother turn into demented 57 year old.  I see his 40 year old wife watching her life disappear before her as she struggles to keep her 3 year and 9 year old from being permanently damaged by their father's decline.

Picks Disease is an early onset dementia that is devastating hundreds of lives around the UK , also known as fronto-temporal dementia it seems to affect people mainly between the ages of 45 - 60 but can strike even earlier. It is a condition that causes a gradual shrinking of either the front or temporal regions of the brains.  This results in bizarre personality changes, inability to find the right words, aggressive and erratic behaviour, loss of empathy, inappropriate sexual behaviour, even violence - the list goes on.   Because it strikes so early it can tear apart families leaving young wives or husbands to cope with small children and the growing demands of a rapidly deteriorating partner.

Like Alzheimer's Pick’s is especially hard to cope for all the obvious reasons.  But unlike later dementias Pick’s brings it own very individual set of problems: 

Not all Pick’s sufferers are quite this extreme of course, but the life of a young carer is a sad and lonely one.  Not only are the coping with the basic care they are also having to tolerate the ignorance of those around them.
I have become involved with the Pick’s Disease Support Group and some of the stories I hear on their international Chat Forum are heart breaking.  All these carers really want and need is support and understanding.  A documentary could go some way to help them tell their story and in the process help people around them really understand what they are going through.  Sadly there is no cure as yet for the sufferer, but we can make the carer's life easier and I believe we have a duty to do this.

Geri Parlby

Experience with Brain Donation

By Duncan Hutchison

OUR STORY

My wife Ann developed FTD at about the age of 68 and was fully investigated at the National Hospital for Neurology and Neurosurgery, Queen Square, London. I was aware that brain donation would be an important contribution to the hospital research programme, but by the time I started to think about it seriously, Ann was no longer able to discuss the matter. I don’t really think I would have wanted to discuss it with her anyway. I talked it over with our children and we felt that Ann, as a medical research worker herself, would probably have agreed to it. As it turned out, I only got round to contacting the Brain Bank at Queen Square about three weeks before her death. I was concerned about how we would get this done, so at the same time, I contacted a local undertaker who assured me that they were quite familiar with this type of situation.

Ann gradually deteriorated and eventually passed away peacefully at home with her family at 3.30 am on a Sunday morning. I then tried to phone the Brain Bank out-of-hours service. Unfortunately I could make no contact, I now know because I was using the wrong phone number! My next move was to ring my GP to ask for a doctor to come and confirm death. I was put through to their deputising service, but although I explained that Ann had to be removed to a refrigeration unit within four hours of death, the receptionist told me that a doctor would not attend until after 7 am as this was not an emergency. The undertaker, of course, could not move her until death had been confirmed. After another phone call from me, the doctor eventually came at 7.30 am and was actually very apologetic about the delay. (The Brain Bank staff told me later that useful results can still be obtained if refrigeration is delayed for up to eight hours, though ideally it should be done within the four hour time limit).

We then had some rest until Monday morning, when I was round at the GP’s surgery to get the Medical Certificate showing the cause of death, which then had to be taken to the Registry Office. The Registrar issued the formal Death Certificate, which we took to the undertaker where we discussed the funeral arrangements. I got a Parking Ticket during all of this!

Early on Monday afternoon, I went to Queen Square to meet the Brain Bank director who took me carefully through the lengthy consent form. One can change one’s mind even at this stage! Then Ann was taken by the undertaker to Queen Square and returned to their premises after the procedure. The expenses of this (but not of other funeral expenses) are covered by the Brain Bank.

Together with all this, we had to phone our friends and relatives and arrange the funeral. So one is kept very busy, at a time when one may feel least like it.

I felt that, as a result of these experiences, it would be worthwhile airing the subject more widely among our carers’ group and providing some guidelines on the procedures for brain donation.

SOME GUIDELINES FOR BRAIN DONATION

I am very grateful to Linda Kilford and Susan Stoneham of the Queen Square Brain Bank for helpful advice on these Guidelines.These guidelines apply for people who have been followed as patients at the National Hospital for Neurology and Neurosurgery.  Other Groups also have their own programmes and guidelines.  If the person you are looking after is not in a research programme and you are interested in finding out more about donation please contact the Brain Bank at the Institute of Psychiatry; details at the end of the article.

Brain donation is crucial to the future of research in this field. In many cases, an exact diagnosis can only be made by detailed examination of the brain tissue and the results can on occasions be of importance to relatives of the deceased.

1. Registration with the Brain Bank

It is very important to register the patient with the Brain Bank well in advance. Potential donors or their relatives should therefore contact the Brain Bank at the National Hospital for Neurology and Neurosurgery, Queen Square, London, as soon as possible after a decision has been reached. The details are then on record and the Brain Bank staff can give help and advice at any time.  It becomes much more difficult to arrange matters if contact is left to the last moment, particularly if the patient remains at home.

Telephone on 020 7837 8370 to Susan Stoneham or Linda Kilford, who will be glad to explain what is involved. They will send a detailed information sheet explaining the procedures together with a consent form to be returned to the Brain Bank, signed by the potential donor, by the next of kin or by a nominated representative (who may be a partner or friend).

The Brain Bank staff will be able to advise on appropriate procedures for any part of the UK and can contact the GP or undertaker if required.

Potential donors or relatives can access the Brain Bank web site on:

www.ion.ucl.ac.uk/QSbrainbank/index.htm

This contains useful information and a registration form.

2. Discussion with General Practitioner and undertaker

It is important to discuss the brain donation question in advance with the GP, with the objective of minimising delay in confirmation of death: also with the undertaker so that the procedure and transport requirements are fully understood. All undertakers should have their own refrigeration unit or access to one.

3. After Death

a. Phone Brain Bank

The procedure for patients who die at home requires rapid action from the bereaved relatives at a time when they may feel least like it. Immediately after death, telephone the Brain Bank on 020 7837 8370 as above. If out of normal working hours, callers will find an answer phone message giving the mobile number of the person on duty (either Susan Stoneham or Linda Kilford).

b. Phone GP

The GP must be phoned to ask for a visit to confirm death, which has to be done before the undertaker can remove the deceased to a refrigeration unit. It may sometimes happen that the GP (or more likely, a GP deputising service) is reluctant or unable to visit in the middle of the night to confirm what they would regard as an ‘expected death’. The undertaker should also be phoned at this time to inform them of the death. If any difficulties arise, the Brain Bank staff can phone the GP and/or undertaker to give advice and help on any point.

c. Arrangements for brain donation

After official registration of death, the registration document should be shown to the undertaker who can then arrange transport of the deceased to a local hospital or other suitable premises, where the brain can be removed by a trained specialist and preserved for entry into the research programme. At this stage, a further consent form must be signed by the next of kin who would be taken carefully through the details of this by the specialist or another authorised person. The undertaker’s expenses for the purposes of  brain donation will be paid by the Brain Bank, but other funeral expenses are not covered.

4. Information on the brain examination for relatives

Information on the details of the brain examination can be made available to the next of kin on request and a specialist would explain the meaning of the results. Occasionally these results have implications for other family members.

Further reading

Brain Donation for research into Pick’s disease and related dementias. Nadeem Khan. PDSG Newsletter 2003 Vol 9 Issue 1.

The Changing Face of Pick’s Disease. Jim Lowe. PDSG Newsletter 2003 Vol 9 Issue 3.

For further information please contact the Brain Bank Co-ordinator Dr. Saliha Afzal, The Institute of Psychiatry, Denmark Hill, SE5 8AZ

Ph. 0207 848 0290 – 9.30 – 5pm

Out of hours 0207 848 0001 (Main reception) and ask for the person on call for the brain bank to be paged.

Forthcoming Events

London: The Old Boardroom, National Hospital for Neurology and Neurosurgery, Queen Square, London WC1N 3BG. 11.30 Introductions, Discussion, 1.00-2.00 Lunch 2.00-4.00 Your own Experiences.
Dates:-
14th September 2004 Speaker 12.00-1.00 Gail Robinson, Neuropsychologist, National Hospital for Neurology and Neurosurgery
3rd December 2004

North-West Meetings:Carer’s meeting 7.30-9.00pm Mary Dawbers 52 Mallard Crescent, Stockport SK12 1HT
Email: dawbers5@btopenworld.com Tel: 01625 879104

Nottingham: Meetings are from 7.30pm at Lings Bar House or ‘The Goose at Gamston’
Email: carol@pdsg.org.uk Tel: 0845 458 3208

Contact Details

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