Booklet - 2003

Val's Journey by John Rendell

I first felt certain that Val was ill at the end of September 1998. I was at home for a weeks holiday from work, the first time I had spent several days with her since our holiday in Portugal in mid August. Up to and including our Portuguese holiday life had continued in its established, comfortable pattern. Val had organised the holiday, as she had always done, the arrangements were all perfectly satisfactory. we enjoyed the holiday, came back and I returned to work. It was immediately following that that I first noticed little things starting to go wrong at home, milk going sour, food going rotten in the fridge, the same meal being presented in the evening when I got home from work, and her wearing the same clothes with little variation. Colleagues from work telephoned me at home and she would forget to pass on the message to me. None of these things were particularly significant, and initially I thought perhaps she was simply overdoing things – working too hard etc. Whilst we were on holiday in Portugal, and she was wearing her swimming costume. I had noticed that she had put on some weight, but even this was not particularly significant; it later transpired she had gained approximately a stone, going from 9.5 to 10.5 stone. She had always been very fastidious about her weight, but still I did not think this was anything untoward.

One day during my holiday at the end of September I was relaxing in our conservatory; Val appeared with a video tape and proceeded to watch it on the video, but only for about 10 minutes. She did the same thing twice more during the next hour, always watching the same bit of the video. I asked her why she was doing it, she merely replied that she enjoyed the video. It was the look in her eyes that day which really frightened me, and made me feel sure that something was not right. Her eyes had for me always been her best feature, big and deep as I remember them looking across the dance floor when we had met for the first time in 1972. On this occasion her eyes seemed dull and lifeless, and reminded me of the same look I had seen previously in an Alzheimer's sufferer. It seems strange now, looking back, that I remember thinking that she could not be suffering from Alzheimer's disease because she was too young - she was then 43.

Val's mother and sister live in adjacent villages in Wiltshire and saw Val frequently. They, like me, became concerned that Val was ill at about the same time. Val's mother recalls going shopping with her and remarking on how little interest she showed in the clothes she was buying. It was not so much that what Val was doing was odd, rather it was different to how she had behaved previously when well.

When asked if she was feeling alright Val would consistently reply that 'she was fine', and that there was nothing wrong. She was absolutely consistent in this, and did not want to see a doctor. After some weeks, with the situation clearing getting no better, I finally insisted and the doctor's appointment was set for 1 December 1998. In the intervening period, our son Guy was Confirmed. I made all the arrangements for this event, whereas previously Val would have undertaken this. It was clear by then to all Val's assembled family that she was not well, although we were all equally puzzled as to what the problem was.

Our doctor provisionally diagnosed Val as suffering from an under active thyroid condition, prescribed blood tests and referred Val to a Consultant Psychiatrist. Mercifully I had private medical insurance, so that the consultation was able to take place quite quickly, and did so in early January 1999. Prior to that consultation I had noted down all of Val's odd behaviours.

A selection of these is:

• Loss of memory/becoming forgetful

• Would sometimes drive to Devizes (our nearest town) several times a day to perform one task

• Began talking about events which took place many years ago, which she would repeat, seemingly unaware of the repetition

• Ate hungrily, whereas previously she had eaten sparingly

• Would go to the lavatory much more frequently than previously

• Was losing interest in her clothes and physical appearance

• Would go to bed early, at this time around 9pm

• Liked to watch extracts from choice videos frequently

• Not seeking external society, only comfortable with people she knew well

• Occasional childlike behaviour, but only in privacy of home

• Not obviously unhappy, possibly even the reverse.

Doctor Lodge, Consultant Psychiatrist at Green Lane Hospital. Devizes. confirmed the provisional diagnosis of an under active thyroid condition, notwithstanding that Val's blood test had come back negative. He said that this was not unusual with this condition, and that sometimes it could take some weeks (or even months) for the blood test to show positive. Val had another blood test, and we saw Doctor Lodge again in February 1999. By then Val's behaviour had become increasingly odd and erratic, she would go off in the car on relatively long journeys (to Swindon and Bath) for the most trivial of reasons, or indeed for no reason at all. At the February meeting with Doctor Lodge, the second blood test having come back negative, and it being obvious that Val's condition was deteriorating, Doctor Lodge did say to me (as an aside) that it could possibly be 'one of these nasty brain disorders', but still said he thought that it was unlikely and that the under active thyroid condition remained the most likely cause. However, he did suggest Val had a brain scan, which duly took place, but which also came back negative. At the time the negative brain scan seemed reassuring, because it did at least rule out tumours.

Val's condition deteriorated alarmingly and sharply at the end of February 1999, to the point that the daily routines of life started to become quite difficult. Fortunately the school holidays came, with Guy and our daughter Charlotte being at home, and able to keep an eye on Mum, although respectively only 14 and 9 at the time. My concern then was such that I arranged an appointment with our solicitor to go and write our wills, which we duly did at the end of March 1999.

Another blood test came back negative, and I was becoming very concerned. By now I was coming back home early from work, doing house work in the evenings and generally trying to keep the wheels from coming off at home. The children, despite their youth, were extremely helpful and able to exert some control over Mum. In particular, on occasion, they took away her car keys to stop her driving off on pointless outings.

A good friend, who had the misfortune to have a child who suffered from Canavan's disease (another extremely rare and unpleasant brain disorder), had told me of the existence of something called an MRI scan, which in his case had provided a diagnosis where all else had failed. I mentioned this to Doctor Lodge, who agreed that it was appropriate by now for Val to have such a scan. My private medical insurance was again invaluable, because Val was able to jump the queue, and she duly had the MRI scan at Bath Royal United Hospital on Thursday 15 April 1999.

The Diagnosis
I went to work as usual on Monday 19 April 1999 and in the morning received a telephone call from Doctor Lodge's secretary, saying they had the result of the MRI scan, and would I like to come in with Val that evening to see Doctor Lodge. I have dealt a great deal with professional people over the years, and although the secretary's tone on the telephone was relaxed and easy going, all my experience told me that things were serious. I telephoned Val at home; to my pleasant surprise she answered the phone, something which by then would not necessarily happen. I said I would be home early to take her to Doctor Lodge in the evening. I clearly recall having considerable difficulty in concentrating at work that afternoon, indeed I did consider whether to abandon the meetings I had and come straight home. In the event I carried on and came home as arranged to pick up Val to take her to see Doctor Lodge.

Doctor Lodge told us that the outcome of the MRI scan was conclusive, that there was a diagnosis, and that there was a serious problem. He asked me (not Val) whether we 'wanted to hear it all now'. After seven months I was desperate to know the problem, so I said to Doctor Lodge that ’I would like to hear it all'. He said, very precisely. that Val was almost certainly suffering from Pick's disease, a form of dementia for which there is no known cause or treatment, and that the average life expectancy post diagnosis for a sufferer with this condition is 5.6 years.

Nothing can prepare one for such a catastrophic diagnosis, but whilst I produced the normal emotional response Val did not bat an eyelid, or react in any way. Doctor Lodge may as well have said it is raining outside (which it was) for all the apparent difference it would have made to her. It was her complete failure to react, or seemingly to comprehend the significance of what she had heard, that made me realise just how ill she must be. Doctor Lodge referred Val to a Consultant Neurologist, although he did confirm that there was little doubt as to the diagnosis, in part because her condition was sufficiently advanced for there to be a considerable measure of certainty as to the atrophy pattern from the MRI scan being consistent with Pick's Disease. This was obviously a mixed blessing, sad in that it was telling us that the illness had already progressed significantly, but positive in at least giving a firm diagnosis and removing doubt and uncertainty.

We went home, stopping on the way to see Val's sister and tell her the news. This was another memorable experience, not least because of Val saying that she had been told she only had 5.6 years to live, but that 'everything would be alright, John!' The enormity of the situation simply failed to register with her. On the way home from Val's sister's house. I remember desperately trying to think what I was going to tell the Guy and Charlotte. I am a poor liar, and given my emotional state it was obvious to me that any attempt at subterfuge was impossible. Guy has since said to me that it was plain from my face that evening that it was very bad news. I duly told Guy and Charlotte the outcome, there were huge hugs and floods of tears between us, but Val went straight to bed. Her emotions were all wrong. My abiding memory of that dreadful evening is of Guy howling like a wounded animal on being told of his Mother's condition.

I did not go into work the next day, and as it transpired never went back to work again.

Doctor Lodge provided me with certain details on Pick's disease, and kind friends at work scoured the internet. This travel produced helpful information, especially certain case studies. Although Pick's disease is extremely rare, there was sufficient information there, particularly two or three similar cases of women who like Val, had been diagnosed with Pick's disease in their 40's. It quickly became clear that the life expectancy of 5.6 years post diagnosis was flawed, with none of the similar cases achieving anything like this. I now understand that the statistic is unreliable, in part because of the inclusion of older sufferers where the duration of the illness is longer, and also where confusion with Alzheimer's disease is more likely. It was also clear that the eating disorder would be the primary factor in determining timescale. It was already apparent that Val was on occasion having difficulty with swallowing, as though she was having to concentrate overly to make it happen. Having gained weight until December 1998, to our amazement we found that she had lost approximately 1.5 stones between then and April 1999 when Pick's disease was diagnosed. In the approximate 4 month intervening period, she had stopped eating the chocolate biscuits for which she had developed a craving; I imagine, and with the benefit of hindsight, this was because she kept forgetting to buy any; she had also stopped bothering much with 'proper food'.

Following the diagnosis I was with her at home all the time, and took charge of matters, organising the children's routines etc. It was clear that this was a great relief to them and to Val. I remember Guy quite happily watching Manchester United playing football in the Champions League on the television on the evening of Wednesday 21 April 1999 only two days after the catastrophic revelation of his Mother's terminal diagnosis. Children are very resilient. Life quickly got onto a reasonably even keel at home, with the help of family and friends. Val did not seem to think it strange that I was at home all the time only once or twice asking me when I was going to go back to work.

The most difficult problem I recall having to deal with during this period was stopping her from driving her car. This I achieved simply by ensuring that the keys to both her and my car were in my pocket at all times. If she said she wanted to go somewhere, I would say that I would take her, or that we did not need to go at all, and this approach generally worked. On 1 June 1999 I drove her car to a friend's house nearby, who had kindly agreed to sell it for me. Val did enquire where it had gone; I said I had sold it. She asked how she would be able to get about, whereupon I said that I would take her wherever she wanted to go. This appeared to satisfy her, and she quickly stopped talking about her car.

This period was very busy for me in that I had to extricate myself from the firm in which I was a partner and learn how to run the house, cook etc. One of the strangest things in all of this is that Val was able to teach me how to cook, although by then being quite unable to cook a meal herself, because she had no sense of prioritisation or managing the various tasks, and a limited attention span. However, she could still remember, and tell me, how to cook a particular meal, which I was able to do because I could prioritise and organise the various tasks involved.

It seemed a great relief to her not to have to bother with the household chores; she was never resentful or in anyway difficult when I simply took things over. She did carry on doing the ironing for some months, but eventually this stopped because she would do no more than one item per ironing session and would occasionally bang the iron and shout 'come out crease! '. I called a halt at this point.

Within a short time of the diagnosis a new pattern of behaviour emerged. Val would spend her days getting into and out of bed, sometimes putting on her night-dress, sometimes remaining dressed, and sometimes appearing tired, but not always; she also took to playing the piano and riding her bicycle.

Val had been a competent pianist at a younger age, although through her period of motherhood and work as a nurse and health visitor she had had little time to play the piano. Now she obviously had more time, and the inclination. Her favourite piece was the old English melody 'Greensleeves' which she would play repetitively. At its height, I imagine she played Greensleeves thirty times during the course of a day. She would play other pieces, including Charlotte's children's pieces, and particularly liked it if Guy, Charlotte or I would dance round an imaginary totem pole in our sitting room while she was playing 'Indian Tom-toms'. As it obviously gave her enormous pleasure, we tried to indulge her as much as possible, but dancing around an imaginary totem pole in one's sitting room repetitively can become tedious!

Perhaps it was because she was no longer driving her car that Val turned to bicycle riding. something she had not done since her childhood. She took to riding around the village and locality during the summer of 1999 and became a well known figure on the country lanes. To the village people who greeted her she would invariably say 'You're a nice person to say hello to me' or if she could remember their name, as in the case of our vicar Derek Frost, would say 'You're called Derek Frost! '. However, her bicycle riding quickly reduced to the same very short trip, which took no more than two minutes to complete, and which she would do repeatedly. At its peak during the summer of 1999 she may have been doing the same abbreviated bicycle ride as many as fifty times per day. Only occasionally did she deviate from her chosen short route.

Val also liked to be taken out in the car on trips to Devizes (our local town), or Bath. She would have imaginary conversations with the passing cars, looking at the registration plates and saying, for example, 'Hello RTH, how are you today RTH?'. She would manifest displeasure if we were stopped by a red traffic light, usually saying 'turn to green instantaneously traffic light! ' If it did not immediately obey her command, there would be an intake of breath, followed by a growl, and finally she would bark, literally like a dog! This performance was actually quite comical, and without anger in the normal sense. Although it is an immense human tragedy, Pick's disease is not without its humorous moments.

Shopping was quite difficult; I either had to shop one handed while holding Val's hand with the other, or park the car such that if she remained in the car she was visible to me from the shops I needed to visit. Happily most of the people in the shops I visited regularly in Devizes quickly became helpful and sympathetic.

We had regular visits to the Consultant Neurologist, Doctor Dawson, at Bath Royal United Hospital, to monitor Val's condition. It quickly became noticeable that the quality and quantity of her speech was deteriorating, and the eating disorder became more pronounced. As soon as we knew what was wrong with Val, and that eating was likely to become a problem, I allowed her to eat as much chocolate as she wanted, and also indulged her liking for grapes. She was attracted to the fruit bowl in the kitchen, and to grapes in particular. I always ensured that grapes were there. Given her increasing difficulties with eating generally, I thought it as well to encourage her to take anything that took her fancy. I was also aware of one of the more bizarre features of Pick's disease, namely the desire of sufferers, in extreme cases, to reach out for any coloured object to put into their mouth (or even nose). I thought that the grapes would conveniently satisfy this particular craving, which they successfully did.

Only very occasionally did Val put the grapes up her nose. An unfortunate by-product of this eating regime was that on occasion Val would be sick. The frequency of her sickness increased, to the point that in May 2000, after she had been sick all over herself in the car after a surfeit of chocolate following a visit to her Mother, I decided it was time to deny her chocolate, which I did simply by ensuring there was none in the places in the house where she would look. Actually, there was chocolate elsewhere, but by then she lacked the ability or determination to search exhaustively. However. I did carry on allowing her the grapes in unlimited quantities. She showed no sign of displeasure at being denied chocolate. It seemed not to bother her at all.

For the first year or so of her illness (on the advice of Doctor Lodge and Doctor Dawson) I had left Val on her own at home for short periods when I needed to do things which it was particularly difficult to do other than on my own. This practice ceased in July 2000 when I took Guy and Charlotte to the dentist for their routine dental appointments and left Val at home. When we returned from Devizes there was a note on our door; a helpful neighbour had intercepted Val when she was purposefully walking in the direction of Devizes, apparently to find us, and had looked after her in her house whilst we were away. A few days after that we had another very worrying incident when Val went off on her bicycle, but did not return. We went out looking for her, she had obviously not taken her usual route, but we could find no trace of her. We alerted the police, and happily the Wiltshire police helicopter quickly spotted her. Somehow she had arrived at Keevil airfield, some 3 miles from home, and was quite happily cycling around on the runway, and very visible from the air! She had taken a wrong turning, and from there just kept on cycling. The police brought her home, but of course the first thing she wanted to do on arriving home was to go on another bicycle ride! From then on we either always accompanied her on her bicycle rides, or watched her arrive and return, the majority of her route being visible from our home.

A near tragedy occurred on the morning of 30 October 2000. We had had a period of torrential rain, and there was considerable flooding. Unbeknown to me the river in our village had flooded, with the flood water advancing a considerable way up the lane which was part of Val's normal bicycle route. For some inexplicable reason (but Pick's disease defies any logical explanation) Val took it upon herself to ride into the flood water on her bicycle, and kept on riding. As soon as she did not return in the appointed time for her bicycle ride (approximately two minutes) I realised there might be a problem and went looking for her. I was appalled at the sight of the flooded river water which had advanced up the lane. The river itself had disappeared, as it were, and the whole area of the river and its surrounding meadows was just one enormous lake. I called Val, getting no response, and could not see her. I returned home and summoned the police, who arrived within about fifteen minutes. I was fearing the worst, but to my amazement, and approximately five minutes before the police arrived, I heard a sound in the garage and there was Val returning with her bicycle, soaked from head to foot and with grass and river debris on the highest parts of her bicycle. She had clearly no idea where she had been, or what had happened, and was blissfully unaware of being soaked. Following that incident I ensured that she only ever went on a bicycle ride when accompanied, mostly by me. This was not as onerous or time consuming as it may sound, because the frequency of the bicycle rides was by then declining.

Doctor Dawson, Consultant Neurologist at Bath Royal United Hospital, had consistently been in agreement with me that Val's realistic life expectancy post diagnosis was less than 5.6 years. However, he was, perhaps understandably but not helpfully, reluctant or unable to be at all specific as to likely timescales, until during a visit in October 2000 he had said, after being pressed by me, that Val was unlikely to live beyond either 'next year or the following year'. This prediction turned out to be accurate.

I was not prepared for the onset of incontinence, which those who have experienced it will know is one of the more demanding challenges that a carer has to deal with. Val became incontinent at the end of February 2001; this occurred almost literally overnight, one day she was perfectly able to manage matters for herself, as she always had, but the next day she was completely incontinent. Within two weeks I was in danger of disappearing under an avalanche of laundry, and was extremely tired. I 'put up my hands' and said I could no longer cope, and mercifully Val was admitted to Bath Royal United Hospital (the Neurology Ward) to give me some respite. something I had not had, or ever had subsequently under the auspices of the National Health Service (the absence of which remains a bone of contention for me). I felt guilty the whole time Val was at Bath; although her emotions had never been right from the earliest days of her illness, it was clear that she was, in her way, unhappy and did not want to be where she was – she did not comprehend she was in fact in a hospital. She wanted to be at home with her family. Although by now her speech was very limited she did say to me on several occasions when I visited her 'where is your car John?'. She was still able to understand that if she got into my car with me it would take her back to where she wanted to be (i.e. home.) In the two weeks that she was away I was able, as it were, to regroup and recharge my batteries. Fortunately, when I did bring her back home things went well. The incontinence pads and bed blankets all worked, and were easy to use. The hardest feature of managing incontinence is constantly clock watching and having to organise the daily routine in two hour chunks. I thank God that I was able to cope with her so that she was able to spend her last months at home untroubled and with her family.

By now Val had substantially lost the inclination to go on bicycle rides, and her piano playing was much reduced also. She had stopped playing Greensleeves and her other choice pieces, and her playing was confined to attempting whatever piece of music was open on the music stand in front of her, that is to say whatever piece Charlotte was playing at the time. The extraordinary thing about this is that many of these pieces were unknown to Val, but she had not lost the ability to sight read music, and would happily make quite respectable attempts at them for periods of one to two minutes. Although by now her short term memory had substantially gone, her long term memory and deeply imbedded skills were still in part at least intact. Her bicycle riding was replaced by walks in our garden, often barefoot, notwithstanding our many and repeated attempts to keep shoes on her feet. It is approximately a fifty yard trip around our vegetable garden and this circuit she would undertake quite happily many times a day. Se would gently touch the leaves on the shrubs adjacent to the vegetable garden while passing, sometimes picking off leaves which caught her eye. We would find neat little heaps of leaves deposited in the kitchen! She was usually reliable in undertaking this walk, although occasionally she would take a wrong turning which would lead her down the drive and out on the road, so I did have to resort on occasion to locking the front gate, and chasing after her.

Val was still well enough to accompany us on holiday at the end of August 2001. We were still able to manage a 'normal' holiday; Val's sister and brother-in-law accompanied us, and we took a suite which gave us additional space and privacy, as we had done previously. It was enormously satisfying that we were able to enjoy family holidays with Val, even in the advanced stages of her illness. She could still manage to play tennis with us, which obviously gave her pleasure. A highlight of summer 2001 was Guy's excellent examination results in his GCSE's, the most eloquent testament to the resilience of children in adversity. Sadly Val could not comprehend our son's achievement.

Early in October 2001 Val's eating and drinking declined sharply and alarmingly. Despite a gradual decline in her eating and drinking over the previous two years, her weight had remained remarkably static at around nine stone. It now started to decline quickly, almost daily, in fact. She seemed unable to manage more than a few 'swallows' after which food or drink would simply remain in her mouth and then 'reappear'. I did become quite skilled at coaxing her both to eat and drink, but despite my best efforts the decline continued. A consequence of this was that her bowel action became a problem. and we needed visits from the District Nurse to administer suppositories. By the end of October 2001 the only thing I could manage to get Val to take was a small amount of crumbled chocolate biscuit, fed to her with a teaspoon, together with a few sips of tea. Her previous routine of structured meals, albeit in small amounts but at normal times, collapsed. She now showed little desire to go with me in the car, although I still took her with me on our shopping trips to Devizes because I did not wish to leave her alone at home.

Fearing the worst, and desiring to keep matters simple, I sold Val's remaining investments and on 8 November 2001 asked her to sign the necessary documentation. Remarkably, she was still able to sign her name and understand the instruction so to do. This was the last occasion she wrote.

A huge deterioration in her condition was evident on the morning of Saturday 17 November 2001. When I got her out of bed in the morning to bring her downstairs for some breakfast, she could barely stand up, and could not walk unassisted. Her body tone seemed to 'have gone' in that she was very 'spongy' to the touch, but most alarmingly of all she was unable to hold her head upright; it hung on her left hand shoulder. She took almost nothing at breakfast, and I deliberated on whether or not I should give her her normal bath in view of her condition. However, I decided to go ahead and did manage the operation, although for the first time I had to lift her both in and out of the bath; she was like a baby in that had her head gone under the water she would have been unable to rescue herself and would undoubtedly have drowned. I got her back into bed and deliberated on whether or not I should call for assistance, but in the event did not. Val remained in bed the following day (Sunday 18 November 2001) taking no food and almost no liquid. She remained conscious, and continued to be aware of her family around her. She clearly said 'Charlotte' when Charlotte appeared by her bed, and said 'I would' when asked if she would like a cup of tea. She had to be supported in order to be able to sit upright in bed, and could barely take any of the tea in any form; we were reduced to trying to administer it by damping a clean finger in the tea cup and putting this finger in her mouth. The following day (Monday 19 November 2001) the District Nurse arrived and suggested that we do no more than moisten Val's mouth. That afternoon Val passed into what can only be described as a 'comatose state', that is to say she lost consciousness in the normal sense. Her skin colour changed to a rather unhealthy looking grey/yellow, and she remained absolutely motionless with her head on one side on the pillow. The right side of her lip began noticeable to drop, as though she had some form of palsy. She lay in bed like this for the remainder of that day, that night and the following day (Tuesday 20 November 2001). Her breathing became very shallow and short.

On the morning of Wednesday 21 November 2001 I awoke at approximately 5.40 a.m. fearing the worst. To my pleasant surprise Val was still breathing, the rhythm much the same as it had been for the previous thirty-six hours. I therefore thought she would live on, perhaps for at least another day, as the District Nurse had advised that it was most likely that she would die during the night. I relaxed and dozed for another hour until 6.40 a.m., my usual 'getting up time' to organise the children's breakfast, etc. One of Charlotte’s little habits had been to come into our bedroom and borrow Mum's hair brush to brush her hair at her dressing table before coming downstairs for breakfast. At about 7.05 a.m. she suddenly shouted 'come quick, Dad! ' I raced upstairs fearing the worst. Val had stopped breathing. She had died between 6.40 a.m. and 7.05 a.m., Wednesday 21 November 2001. It seems overly dramatic to say that she had died. A better description is perhaps that she had simply stopped living. She was in exactly the same position in her bed as she had been when I went downstairs at 6.40 a.m. - there had clearly been no final convulsion or any concluding event of any form. It was 2 years 7 months and 2 days from Monday 19 April 1999 when Val had been diagnosed as suffering from Pick's disease. She was 46 when she died.

The Epilogue

Val and I were 17 and 18 respectively when we met in 1972; we were married in 1977 and in our near 24 years of marriage we lived initially in London, with a year in America in the middle, and eighteen months in Paris and Brussels before returning to Wiltshire, whence we came, and were blessed with two beautiful children. I therefore like to think that Val can be said to have lived a full life, albeit a truncated one. I have come to understand that fulfilment in life is what really matters, not mere longevity. Pick's disease sufferers know no pain, experience no anguish and in Val's case (which I imagine is not untypical) are blissfully unaware throughout of their situation. Hers was a serene withdrawal from life. Moreover, Val will never experience a debilitating or decrepid old age. It is the loved ones, family and friends of sufferers of Pick's disease who have to stand by and watch helplessly the reduction of a once vibrant and healthy person as this dreadful disease takes its inexorable and merciless course.

Greensleeves was played at Val's funeral. The church was full. Her funeral was a dignified, memorable and special occasion.

It is now some months since Val died. Given how ill she was, and how long she was ill, I am surprised by how much I miss her. Even Pick's disease cannot extinguish the companionship of a much loved human being. Death is still very final I thank God for Val's life; may she rest in peace.

John Rendell

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