15 December 2009

The geriatrics were blessed with yet another beautiful winter’s day chilly, but sunny and thankfully no wind as I was determined to make this the final appearance of my kilt this year. I wore it, as much as anything, because this was the day of Christmas lunch and it  added a touch of colour.

16 December 2009

Some months ago,  someone from the NHS came here to assess what environmental control systems they could provide, bearing in mind the continuing loss of the use of my hands. Today, an engineer came as a result of that visit to fit some equipment, basically touch sensitive light switches, a hands-free alarm telephone from the office to the house and a thing called a ‘possum’, which enables me to operate the lights, telephone and power switches from a foot control. This possum is activated through a small television like screen on a heavy base through which one scrolls, via the foot pedal, to the particular command required. I know I should be terribly grateful and not critical but I have to admit this ‘possum’ is a bit basic and as a first shot, no doubt, would be is useful for someone who is severely handicapped but it needs to go to its next stage of development and become perhaps wireless or voice activated, for example.

It is only possible to make a telephone call by scrolling through  page after page of embedded numbers via the foot pedal. Or you can make a call again by scrolling through various columns of numbers on a dial pad the screen. A tedious process,  make a mistake and you have to start again. It is not possible to find a number either by voice or alphabetically  so I can see that, although it was well intended, it will have a very limited use for  me, certainly for the time being. These people are coming back in January to fix another couple of control switches, basically for the lights in the office and my bedroom. I can also switch on and off any device switches operated from an electrical socket such as a fan heater or television, so I suppose, when I ultimately  lose the use of my hands, this will be useful, although I would need to have a duplicate system set up in the house as it only works if you can see the screen and I cannot see the NHS running to that.

Having thought about this overnight I have decided that this equipment really is from the Ark. It’s equivalent to the earliest Amstrad computer that I owned, around 20 years ago,  compared with my modern laptop. What is needed is a voice activated multi-screen device which I have already designed in my mind.  I know that all the science and equipment is available and it really should not be beyond the wit of man to put one together. I have already made an approach to one company.

The day was neatly rounded off with a very nice supper party at the W-P’s with eight other old faithfuls. All, but one couple, have been married to the same partner for the best part of 50 years and are still living in the same house they bought around 40  years ago. Even the odd couple  can account for 30 years. Not one divorce amongst us – not bad for a gathering of friends today.

17 December 2009

I am ashamed to admit that I was off to London again today for yet another  luxurious lunch. This one with Dr Julian Critchlow of my literary executor and a jolly partner, at Fenwick Elliiott’s, Simon Tolson – both solicitors. This time I was escorted to the train in a less dramatic fashion and hopefully did not give the impression to the other passengers that I was  completely legless.

18 December 2009

We had a heavy snowfall overnight but woke to the most beautiful day – bright blue sky. The garden an our thatched cottage looks very pretty, a scene straight off a sentimental Christmas card, also reminiscent of my younger days on the ski slopes.

Jodie from AbilityNet was due today to give me a couple of hours training on the new computer. However, not surprisingly he arrived late  due to the inclement  weather — indeed I was amazed that he arrived at all – he then informed me that he had another appointment in Chelmsford. There was no way he was going to get there and back there in time to give me a couple of hours training, so I sent him on his way in the hope that he got there and home safely and rescheduled my own training for early January.

I have received a very nice reply from Mel Barry, the communications officer for the MND Association, in connection with my comment, in this blog, concerning the TV documentary Into that Good Night. (See 10 Dec. entry)

I had sent a copy to her in advance of publication to ensure that they did not consider I was being offensive, or perhaps overcritical, of the Association. Mel told me that the MND Association  had had no input into the documentary and, in any event, did not find any of my comments offensive. As she pointed out, all MND sufferers are different and approach  the disability in their own way.

I have also been in touch with the chief executive of the MND Association, Dr. Kirstine Knox, over a number of issues. Having acknowledged the kindness and generosity I have received from the Association, via AbilityNet, I did point out that I had been forced onto my own resources to ’invent’ various gadgets or devices to assist me in my daily living and suggested that an important area in which I believe  the system is currently failing MND sufferers and their carers, is the the dissemination of useful practical advice on daily living. Although the MND team at Addenbrooke’s Hospital have pointed me to various publications and independent living centres, as well as referring me to AbilityNet,  they have not come up with practical suggestions as to how to overcome personal problems with which one has to deal with daily. I have to rely on the local occupational therapist, who  although extremely pleasant and caring, proved quite useless when it came to overcoming personal problems due to the diminishing ability to use of  my  hands. My suggestion is that the MND team should include a specialist occupational therapist  depending upon which form of MND the  patient has. It would be her, or his function, from day one to come up with practical suggestions on daily living.

I received a charming lengthy reply to my letter. On the point I made about the dissemination of useful practical advice, Dr Knox pointed out that the multidisciplinary team should include an occupational therapist (OT) who should be able to assess an individual’s needs and support them and find practical solutions to the problem. As no two people with MND are the same or have an exact same problems this should be done on a one-to-one basis. If an OT cannot find a solution they should be offering referral to Specialist Centre’s  around the country that will have a  wider knowledge of equipment and adaptations of daily living. In my reply I said I am fortunate in having been referred to a multidiscipline team at Addenbrooke’s Hospital in Cambridge although the OT only appeared once and does not play an active role in my quarterly assessments I certainly take your point about no two people with MND having the same requirements but, for example, people with weakening hands and arms will broadly speaking meet the same problems, sooner or later. Although I certainly accept Dr Knox’s point that they considered employing a specialist team of OT’s but was something that is not currently viable, I still feel that the Association could at least be responsible for putting together a basic leaflet listing all the sources of information, websites, specialist centres etc as well as including a list of simple practical suggestions, covering perhaps the three broad categories, legs, hands and arms and throat. Then, depending upon which the areas of the body was affected the patient could adopt the practical suggestion or contact the Specialist Centre for advice, as and when necessary.

Tags: Addenbrookes

21 December 2009

Still a lot of snow on the ground and more forecast. I’m beginning to worry about the family getting here for Christmas -  they are due on Christmas Eve.

22 December 2009

We are approaching Christmas and I feel I should explain why the blog is over one month in arrears. Unfortunately Richard has suffered from an unusually heavy workload compounded by a nasty bout of flu and bronchitis. He has all of the entries up to the current date and will endeavour to put them on as soon as possible. It is our intention that the future current entry, at least, will be in chronological order from the earliest date first. As the blog is essentially a diary this makes more logical sense.

This is an appropriate time to wish all my readers a very happy and relaxed Christmas and enjoy every minute you can in the New Year. In this vein I have included an American Christmas message: Christmas Blessings – rather sugary but the sentiments are sincere.

Tags: blog, Christmas

Christmas Eve 2009

Sadly, a thaw has set in and much of the snow is disappearing fast from the garden. I had hoped it would remain long enough for the children to revel in it and perhaps make a snowman. The paddock still has a fair covering and snow is forecast for tonight, so who knows we might be in for a white Christmas yet – the first, I believe, us any of the grandchildren will have seen. The Mouse, the donkey, remains firmly in her stable refusing to submit herself to the winter weather.

The family are on their way and should be here shortly in time for tea. In past years we have always held a small party for our village friends but with so many of them now visiting their own children or their other in-laws we decided against it this year.

The Christmas tree lights are on, the log fire is blazing and all it needs now is for the  family to arrive.

Regretfully I can no longer wrap  presents so  ‘my lovely‘ has to wrap her own and indeed write the cards that go with them but using my own words. Although I can no longer write legibly and therefore can no longer jot down notes during  the night, as I have done for more years than I care to remember, I found an excellent substitute in a dictaphone on which I have had glued some pimple material to enable me to operate the switch.

Tags: Christmas, family, snow

Christmas Day 2009

The family arrived in time for tea mid-afternoon. There was still enough snow covering the ground and the thatch to lend some Christmas enchantment. The little ones, and granddaughter Lara, almost 5 years old, particularly being a little overexcited about the prospects of the day to come.

Last year both Lara, and brother Sebastion, then 7 ¾, both climbed into my four-poster with me around 4 a.m. I did my best to keep them from opening their presents before 6.00, but after much wriggling and sighing, I gave in  around 5.30. This year they have strict orders from their Mum – daughter Chloe -  they were not disturb me before 6.00 and then to wait for her to join us before opening their bulging stockings. After that excitement it was down for breakfast before getting ready for church. In the old days we would always stop off at the W-P’s for a glass of champagne after church before returning home — the WP’s house being adjacent to the church. However this year they were away so it was home to our own champagne and  an early lunch (or is it dinner on Christmas day?).

The meal, beautifully cooked by ‘my lovely’ was utterly traditional. The centrepiece a golden turkey, roasted to perfection, with ham. chestnut stuffing, miniature sausages, cranberry sauce and various exotic chutneys – which came with Tom Grant’s generous F & M hamper  – roast potatoes and all the trimmings. The table was a picture with the flames of the tall red candles reflected in the crystal glasses and silver candlesticks. Each grandchild had a dear little papier-mâché gilded angel in its place setting and brightly coloured crackers, scattered between bowls of nuts crystallised fruits, topped off the  festive scene.

This was our 45^th Christmas Day, most of which have been  spent here at  home  with the family and have never varied. The end of lunch always heralds the Queen’s speech at three o’clock, most recently on television, which we faithfully watch every year. This is the prelude to the arrival of Father Christmas – this year, as most, more recently since I gave up, son Miles, who then distributed a seemingly gross number of presents to all and sundry. Am I only person to remember when I was young it was usually one ‘big’ present and  two or three smaller ones. Be that as it may, the young today undoubtedly are over indulged, at least, that’s the opinion of a stuffy 75 year old.

By the time the presents had been  distributed, ripped open and scattered around the sitting room floor and sack loads, of hopefully bio-degradable wrapping paper had been collected up,  it was time for tea and Christmas cake. No sooner had this been washed down with some tea we reached the witching hour, when the ‘sun was over the yardarm’ and it was respectable to have a drink. Again, traditionally champagne before a light supper of smoked salmon and scrambled eggs, a tropical fruit salad and an excellent cheeseboard. I did open some rather excellent 30-year-old Port to go with the cheese but this was really a special treat. I only have two decent bottles of port left, a ’73 and ’63, the latter being kept to celebrate our 50^th wedding anniversary – will I make it? Frankly, I have my doubts.

Replete, and with the two youngest in bed, we rounded off the evening, as we have always done, with some game or other, this time it was Articulate. I think son Miles and I came last, fractionally behind my 11 -year-old grandson and sister-in-law Kimberly; but then who cares. There would have been a time, when my lack of acuity would have worried me, but no longer. And so to bed, a happy bunny after a very lovely unchanging, unchanged Christmas day. (After reading how I had described our Christmas  in such detail, I was very tempted to delete the reference to all the good things that we had to eat and drink, it all sounded so boastful but because that is what  it was, and to say differently would be dishonest, I decided to leave it. However, having done so, I am intensely aware of how very fortunate my family and I am, compared with many other millions of people throughout the world.  It was for this reason that I included the Christmas Blessing to my readers.

Tags: Christmas, family, snow

Boxing Day 2009

An early-morning visitation to my bed by Lara and Seb. but thankfully not so early is Christmas morning. After they were bored with their grandfather’s chat, I was left in peace to have my breakfast and then  I snuggled down for an hour or so and listened to the test match from South Africa. After a very promising start, of 2 wickets for 10 runs, England allowed the Springboks to build up quite an impressive score but not out of reach by any means.

We woke to a bright blue chilly day and  mid-morning Smiler and I went to the local meet. There was an excellent turnout and no hunt saboteurs. I wonder how long it will take the Conservatives to repeal the current anti-hunt legislation, which is clearly not working, if  they get in at the next election. The day passed happily enough, moving  seemingly incessantly from meal to meal with all doing their own thing, some reading, some playing with their latest toys or gadgets and the young  with the occasional visit to the TV.

Smiler and Kimberly set off home after lunch as Miles has to leave the day after tomorrow to go to Wales to shoot. Before he left Smiler kindly installed my new large number,  hands-free telephone, which he and Kimberly are  kindly given to me for a Christmas present, and which will be a lot easier to use than the old one.

Tags: Christmas, cricket

27 December 2009

Chloe and family gathered up their hordes of booty and left shortly before lunch, leaving a void but restoring the house to its normal tranquillity. Next year they will be elsewhere. Where will we be I wonder! I have personally have wonderful Christmas only slightly marred by the realisation that I am increasingly finding it difficult to rise out of a low chair evidencing the increasing weakness of my legs. They actually gave way on the way to the church leaving me flat on my back on the church path, but then that might have been the ice, it will certainly before drink time.

The grandchildren seem to have taken my disability in their stride without the necessity for any great explanation. Dear Lara, for example, seeing me struggling to turn a page of a book I was reading, popped over and slotted it under the keeper peg of the book stand on which it rested. When it came to meals the  children quickly accepted that grandpa was going to dress up like a clown, with an apron, wrist supports, a removable wipeable sleeve and would be eating with a bent spoon, with a funny handle, and with a long ‘shoover’ projecting from his left hand for pushing food onto the spoon.

Tags: Christmas, weakness