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April 1998: Volume 4 Issue 1
I have of course chosen the best numbers, and I know that Richard has had to stop monitoring as it uses too many back up tapes, but you must all agree that the numbers are very encouraging. Talking of which, we have many members (as you will see
from the phone list) who live in the US. We now have a US distributor of
Newsletters, Mr. Doug Kech. He will also fund raise in the US which will
be a great help.
Kew GardensThe next Pick-nick at Kew is scheduled for Wednesday 20th May. We will meet outside the main gates at 12.00 but we will leave a message at the gate about where we are so that hopefully late comers will be able to locate us. Entry is free as we can register as a support group. It would help us if we knew who to expect so please phone Clare Kelly on 0181 567 9173 to register and to obtain further information.In MemoryPlease could we especially remember Joan and Kenneth Frost, Mr. Jerrard, Queenie Kerswell and Ronald Millsom.Les Degenerescences Frontotemporales"Les degenerescences frontotemporales" is a group which has started in Lille and publishes Newsletters in French. The contact person is Dr. Florence Lebert, Centre Medical des Monts de Flandre, 59270 Bailleul, France. The WWW address is www.lille.inserm.fr/u4222/DegenerescenceFT.html. They have kindly allowed us to publish articles from their bulletin in our newsletter. We hope they will publish some of ours. This is an article published in their third issue:Difficulty in identifying emotions from the expressions of other people. One of the first and most important warning signs of FLD is insensitivity to other people. This could be linked to difficulty in identifying emotions shown by their relatives. They can see something is different but are unable to link this change of attitude to a specific feeling. Therefore they take refuge in what appears to be insensitivity. Dr Isabelle Lavenu, doctor at the Memory Assessment Centre at CHU in Lille is working on this subject and her preliminary findings are: A test was designed for people with FLD. They were shown seven pictures of faces expressing different emotions (happiness, anger, haughtiness, disgust, fear, surprise and sadness). The subjects could detect the presence of an emotion on the face but experienced difficulty in connecting emotion and its meaning. One way to help the sufferers could be to concentrate on the spoken message, the intonation and the body language of the speaker. NEWS from FRANCEThe opening of a specific unit for FLD patients at the Centre Medical des Monts de Flandre à BailleulHopefully this spring the Bailleul Centre is planning
to open a unit specifically for FLD sufferers. After four years experience
with Alzheimer’s Disease, Cortical Lewy Body Disease and FLD the need for
such a unit has emerged from the specific behaviour and lower age of such
sufferers. Their care and social needs are different. They need more stimulation,
a direct way of talking, more protection against their own behaviour which
may endanger themselves. One must also accept their loss of social abilities
and insensitivity to others and not criticise them.
Marilyn Sue Adey Keckby Carilyn Morse (otherwise known as FlyingMom)I know she had only one brother, who was older by four years. I've read the diary she kept while her dad was in Guam during World War II. I've seen the pictures of the accident that claimed his life and broke both of her legs when she was just 13 years old. I've heard all about the young man who visited her in the hospital and helped with her recovery. I've seen the wedding pictures from 1957 when she became his wife the day after Christmas. I know she attended and graduated from high school and junior college in Burlington, Iowa with a degree in accounting. I know the children born to the couple beginning with a boy in January 1959, a girl in May 1961, a boy in July 1964 and the last, another boy, in February 1968. I know where she worked, when and for how long. I know where they lived, when and for how long. I remember her smiles (and her tears) whenever talking of her children: for the oldest son when he taught baby sister her very first words, "Bang! Bang!"; for baby sister when, for her second Christmas, she received a doll and cried because big brother got what she wanted, a football; for the third child who was stung repeatedly when he accidentally stepped on a hornets nest when he was seven years old; for the youngest boy who couldn't understand why his birthday was celebrated only once every four years just because he was born on Leap Year's Day. I know she was a den mother for the Cub Scout troop her sons where in, went to Girl Scouts with her daughter, sat in on PTA meetings, Booster Clubs, school plays, band concerts and sports of all kinds. I know what schools the children all went to as they grew up. I know when each and every one graduated. I know who got married after high school and who went into the services. I know who married whom, when and where. I know how long each marriage lasted. I know the oldest son has been married 15 years and has four children of his own. I know the daughter has been married three times and also has four children. I know the third child has a son and is expecting to become a daddy again in the spring of 98. I know the youngest son has a son of his own also. I know she lost her ability to learn anything new and therefore, her bookkeeping job in 1991 and her ability to drive a car in 1993. I know she began seeing doctors in Iowa City, Iowa in 1994. I know this afternoon she will not remember what she did, said or saw this morning. I know she can sometimes forget names and faces of her children. I know she long ago lost her ability to comprehend simple sentences. I know she forgot how to knit her beautiful sweaters and blankets almost a year ago. I know she doesn't remember telling me stories, she doesn't even remember them happening. I know she barely remembers me anymore. What I don't know is why, at the age of 58, the doctors believe she has Pick's Disease, a form of dementia similar to Alzheimer's. (The diagnoses can not be confirmed until an autopsy is performed. And when told this, she told the doctors to go ahead and do now.) I don't know how much longer we will have her with us. I don't know exactly how or when I will have to tell her goodbye, but I do know I miss her already. And I know just how much I love her. I know this because I was born her only daughter, and she is still my Mom. April 18, 1996 Updated December 31, 1997
Matthew Jacofsky
Hello, my name is Matthew. I am currently a first year graduate student at St Johns University. I am involved in a project for neuropsychology. Part of our assignment is to locate a person who suffers or may know someone who suffers from a particular disorder. The purpose of this is so we can learn from these people about the disorder as well as how they cope with the disorder on a day to day basis. I was hoping perhaps the PDSG may be some assistance to me with my search. My particular disorder of interest is Korsakoff's Syndrome. I would greatly appreciate any information you may have to offer. And may be even the chance to speak with you. Of course all names and stories would remain confidential. I would also appreciate any suggestions you may have on how to gain future information. Thank you very much for your time and I look forward to speaking with you. Yours truly, Matthew If any carer of a sufferer or sufferer of Korsakoff’s
would be interested in helping with the above study write or E-Mail Matthew
directly or Penelope will forward information if preferred.
SPEND, SPEND, SPENDOver the years I have heard a lot about sufferers of Pick’s disease and FLD who have the spend spend spend syndrome. In a full blown spend, spend spend, with little or no insight into any possible illness, a carer is helpless and there is very little that can be done. Hope is that the spending is on smaller items and not houses and cars. It is possible to rationalise with some sufferers but with many it is not. I often ask about the family’s financial situation and my heart sinks when a carer tells me that investing on the stock market and buying and selling shares is the sufferer’s main interest. The other scenario which immediately causes anxiety is when a carer explains that their partner has left his previous employment (has been eased out because of problems) and is now going to set up his/her own company. Cash is also cited as a problem as sufferers often withdraw money from cash points but cannot remember where the money has gone.Judgement, which is a role of the frontal lobe, is often seriously impaired in our diseases. Calculation and the ability to understand complex finances is often retained until quite late in the illness. It is the mixture of the two which often causes problems. Loyalty, respect and maintaining the independence of the sufferer often conflict with the needs of carers to exert some financial control. Taking away the sufferer’s rights to his/her money is an enormous decision to have to make and often causes friction in the extended family as more distant family members cannot understand the extent of the problems. Always the first and most important step to be taken is setting up the Enduring Power of Attorney. However not all sufferers will agree and even such explanations as " it is the modern way of doing things and we should both take out the Enduring Power of Attorney in each others names", or the suggestion that the sufferer is a patient at a hospital and is therefore more vulnerable does not always work. There may also be the problem of understanding the wording as this may be impaired in Pick’s disease. The sufferer having a diagnosis of Pick’s disease of FLD is sometimes a help. Sometimes it is possible for the carer to visit the bank manager and explain the problems without the sufferer’s knowledge, sometimes an arrangement can be made. Limiting the amount of cash, removing cards, limiting the amount in an account are strategies which may work. Sometimes talking to business colleagues of the person with dementia is possible to prevent redundancy money being handed over in a lump sum or preventing encouragement to set up a new business. Often these plans do not work and the sufferer will simply visit another town and open up yet another account. Getting cheques cashed at the golf club or pub is another habit many sufferers have. Often there is the future of young children to be taken into consideration and maintaining their way of life, schooling and social needs is another factor to be taken into consideration. Limiting temptations is extremely difficult. Sometimes it is possible to modify behaviour and temptations by ensuring the sufferer does not pass through the really tempting part of town (I modify my own behaviour this way) but that only works in some cases. Sufferers are often at the mercy of telephone salespersons, magazine articles and junk mail. Restricting access to these is extremely difficult. As the illness progresses sufferers may become more amenable to control measures being in place but it often takes a long time for this to happen. If all else fails it may become necessary to go to the Court of Protection to get access and institute some control. This is a mechanism which looks at finances from all parties points of view but is often expensive to implement. Penelope Roques A Carer’s Account from Scotland:Alex’s son crashed his elderly Volvo and Alex, who was not at this time diagnosed with Pick’s disease, decided that he must replace the car immediately. He visited the Volvo garage the next day and was convinced that the first car he saw was just right. At £11,500 it cost considerably more than the cars the family usually bought and rendered his wife speechless. Alex planned to sell some shares and cash in an insurance. His wife eventually managed to persuade him that this was not a sensible buy for trips to the local station. Mortified but adamant they visited the garage and cancelled the purchase. Later that week the garage contacted to say that they had just the car for Alex at £12,500 which he bought and his wife was too embarrassed to cancel again.Previously Alex had bought his wife a camcorder for her birthday. Usually she got a bunch of flowers and some chocolates. As she didn’t actually want a camcorder they returned it to the shop but of course lost out on the deal. Alex also felt the need to carry large amounts of cash on him whereas for all his working life he had happily carried just a couple of pounds in his pocket. Now Alex’s wife tears up all junk mail, particularly anything advertising videos. She has stopped the Reader’s Digest with all its tempting offers of videos books etc and has also managed to contact an office which stops most of the junk mail being delivered*. Alex’s wife contacted another carer in our directory and was amazed to find that he had encountered similar problems when caring for his daughter. *Mailing Preference Service
Service for limiting junk mail. May take up to 4
months before you notice a steady reduction in the postal reduction you
receive.
Thank you PDSGDear PDSGAngus and I were really grateful to the Pick’s Disease Support Group for sponsorship help with our journey from Glasgow to London on Tuesday for the seminar. We found the trip very worthwhile and it was so uplifting to talk to others in a similar situation as ourselves. The afternoon speakers were quite enlightening and we came home with a clearer understanding of Alex’s illness. Thank you again for your help and to Penelope, who is now not just a voice on the 'phone. With kindest regards Isabel Reid
The Hardest Decision (December 1997)Brenda Brown It’s funny what small things spark off memories. Robert, now 15, lugged the Xmas tree in the lounge, mud and all, and I recalled how must last year a similar tree ended up virtually horizontal. Closer inspection revealed that the bucket was completely awash with water. Bob, in his usual obsessional mood, had been constantly watering the tree. Mouth to mouth revived the poor pine and, like us, it spent a restful, but drier, Xmas. Bob will not be spending Christmas with us this year. He was sectioned and taken from us on the 7th of July. What a dreadful thing to happen to any human. It took two doctors, two ambulance men, two policemen and one poor social worker to prise him into the ambulance. He started to become more restless and aggressive around March time and deteriorated rapidly. He had an ongoing battle with his bedside clock radio. On the dot of 10pm he would retire and try to set the alarm. Only he could not set the alarm and the radio would scream at him. So he screamed back at it, sometimes for two hours or more. Any attempt by me to alter it or remove it would result in aggression followed by yet more screaming. It was pitiful; I liken it to the cries of an animal in pain. Eventually he would sleep, saturated by his exertion. I had already moved into another room but would lie awake wondering whether he would wake. Each week saw a little more deterioration. He would shave several times a day until his face was a mass of sores, which he would then shave. It was a constant battle to keep him clean. Then the violence started, the odd shove here and there. This became a daily ritual and I determined that if he drew blood from me or hit the boys I would have to do something drastic. That day came one Saturday. I was in the garden when Daniel screamed at me to come. I ran upstairs to find Bob slamming the door, with intent to harm, on Robert. It was only the chimney breast that saved him from serious injury. I phoned the social worker on the Monday morning and he was taken that evening. Ten excruciating hours waiting for what I knew to be the inevitable. I hope never again to have such an agonising day. The man I married might have died years ago but this was a demon devoid of any normality. The house was exorcised almost overnight. Guilt and relief were felt in equal measures. He is now in a ward with other sufferers of dementia. They are all considerably older than him but he seems blissfully unaware. Bob is well cared for and I try to visit every other day. Samantha and Robert have made the journey a couple of times but Daniel still cannot bring himself to face him. If a child, although now supposedly an adult, could be awarded a bravery award then I wish it could go to him for the times that he stood between myself and his father in order to protect me. He is still trying to come to terms with that. Bob is in the late stages of Pick’s. He is doubly incontinent, almost mute and shakes uncontrollably at times. The man I felt so angry at has gone and all I feel now is compassion. Our lives are forming without his presence but this insidious disease has actually taught us to be quite self-sufficient. My first letter to you stated that "my eyes are beginning to adjust to the dark". In retrospect I could not have known what darkness still lay out there. My thoughts and understanding are with all carers of sufferers with this wicked disease and I am sure that they feel, as I do, weakened and strengthened in almost equal measure by this encounter with the unexpected devil called Pick’s. (Brenda’s first letter appeared in issue 2#1 in March
1996)
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