18 June 2011

Today, son Smiler came down for lunch on one of his regular visits to check up and see if there was anything he could do for me. Fortunately, things seem to be running fairly smoothly, so apart from one job. everything else seems reasonably under control. In our general chat, we did discuss Terry Pratchett’s Choosing to Die programme and the Living Will which I’ve made, as I think it important that both the children are fully aware of my wishes when I reach a certain stage in this illness. Although Smiler would not assist me to commit suicide -quite rightly in my view -he will obviously respect my wishes when it comes to the Living Will.

 

He did assist me to go through the Agreement and Contract for the Fourth edition of Cato on Arbitration Practice and Procedure, which is currently being updated by Dr Julian Critchlow,and Prof Robert Mirkin. I had very little to contribute to the draft contract as it is being very ably dealt with by my other Literary Executor, Dr James Snowden Barnett. In James. I’m very fortunate in having not only an excellent lawyer, but also one who has owned his own publishing company for many years and is therefore ideally placed to nitpick a contract between Author and Publisher.

 

I had hoped to go out in the garden in my electric wheelchair with Smiler today, but unfortunately the weather was very unsettled-intermittent sunshine and heavy showers – so we decided against it. Hopefully, tomorrow will be better when the German family arrive.

 

One or other of the Ross Nursing girls comes in daily at mid day and six o’clock. Their only purpose, at present. Being to ‘run my tummy’. In other words, continuing the good work being carried out by the aromatherapist. I shall not bother to mention this again as it would be too repetitive to include reference to it in every entry.

 

 

17 June 2011

I did receive a call at nine o’clock this morning from another very helpful technician from Nuance, the Dragon people. We spent an hour together before I had to go off in my Ollie Wheelchair Taxi to the golf club. I left him in charge of my laptop in the hope that he could resolve my problem which he seemed confident he could do. He did say, however, during our session that it would help to speed things up if I had a larger system desk. The present one is 30 gigs with 17.4 gigs free, which I would have thought was adequate. The data is stored on another 250 gig disc on which there is very little used.

The purpose of my visit to the golf club today was as a guest for lunch at the annual match against the HAC (The Honourable Artillery Company) who are apparently the oldest regiment in England. I have played in this match for well over 10 years so it was great fun to catch up with a lot of old friends. I arrived around 11-OO and found my old pal, Bob Lederman, reading a newspaper-apparently he was only going to play in the afternoon-so he accompanied me around the course where we went round hither and thither meeting various foursomes and having a chat. The electric wheelchair works well enough on the course, even in the rough, provided one takes it gently. I did dip into one hole and almost turned the chair over but apart from that the progress around the course was uneventful.

It was not a particularly nice day, rather chilly, and overcast, which is such a pity aer the wonderful weather we have had earlier in the year. Nevertheless, I did manage to sit outside for a while chatting to various people and enjoying a glass of champagne and a small cigar.

When I arrived home and tried out my laptop. I found it the voice activation problem was still there. Being it was sod’s law that it was Friday night so there was now no way I could get this fixed before Monday morning so I had to face another thoroughly frustrating weekend. Bloody computers!!

16 June 2011

I had an horrendous day yesterday struggling with my laptop. First of all, it was the Orange Live Box and that took a couple of hours to sort out with the people from Orange and then I found although the Live Box itself was working. I had no Internet connection. That meant another couple of hours or so with help from my neighbour, Edward Oliver, who had to come in to press buttons and plug things back into it. No sooner had I recovered my Internet than I found that the Dragon, voice activation, was not working. The man, from Dragon, at the other end of the helpline, was extremely helpful and patient but in the end decided that the only way they could fix it was remotely take over control of my computer and an appointment was made for nine o’clock tomorrow.

While all this was going on, and in between telephone calls, my secretary, Doreen, came to catch up with the accounts and filing. Almost at the same time the people from Hollies Wheelchairs, came to measure the pressure of my backside on the wheelchair so they could register and fit a bespoke air-filled Roho cushion on the electric wheelchair. I shall have to spend a full day on it to determine whether it is more comfortable than the original seat but it certainly doesn’t feel any different at present.

In the middle of all of these toing and froings and telephone calls the aromatherapist appeared to do her weekly rub..Around 3.00 PM, Beatrice and Rosemary, two oF Alice’s  oldest friends, appeared for tea and a chat with me. Unfortunately, I was so invovled with the telephone session, attempting to correct my voice activation, that I was unable to spend any time with them.

A thoroughly unsatisfactory day and, as a result, a very boring entry, so to cheer my readers up here is a little joke for you

A woman decides to have a face lift for her 50th birthday. She spends $10,000 and feels pretty good about the results. On her way home, she stops at a news stand to buy a newspaper .Before leaving, she says to the clerk, ‘I hope you don’t mind my asking, but how old do you think I am?

‘About 32,’ is the reply..’

‘Nope! I’m exactly 50,’ the woman says happily.

A little while later she goes into McDonald’s and asks the counter girl the very same question.

The girl replies, ‘I’d guess about 29.’

The woman replies with a big smile, ‘Nope, I’m 50.’

Now she’s feeling really good about herself. She stops in a drug store on her way down the street.

She goes up to the counter to get some mints and asks the clerk this burning question.

The clerk responds, ‘Oh, I’d say 30.’

Again she proudly responds, ‘I’m 50, but thank you!’

While waiting for the bus to go home, she asks an old man waiting next to her the same question. He replies, ‘Lady, I’m 78 and my eyesight is going. Although, when I was young there was a sure-fire way to tell how old a woman was.

It sounds very forward, but it requires you to let me put my hands under your bra.

Then, and only then can I tell you EXACTLY how old you are.’

They wait in silence on the empty street until her curiosity gets the best of her.

She finally blurts out, ‘What the hell, go ahead.’

He slips both of his hands under her blouse and begins to feel around very slowly and carefully.

He bounces and weighs each breast and he gently pinches each nipple.

He pushes her breasts together and rubs them against each other.

After a couple of minutes of this, she says, ‘Okay , Okay ….How old am I?’

He completes one last squeeze of her breasts, removes his hands, and says, ‘Madam, you are 50.’ Stunned and amazed, the woman says, ‘That was incredible, how could you tell?’

The old man says, ‘Promise you won’t get mad?’

‘I promise I won’t’ she says.

‘I was behind you McDonalds.’ A woman decides to have a face lift for her 50th birthday. She spends $10,000 and feels pretty good about the results. On her way home, she stops at a news stand to buy a newspaper .Before leaving, she says to the clerk, ‘I hope you don’t mind my asking, but how old do you think I am?

‘About 32,’ is the reply..’

‘Nope! I’m exactly 50,’ the woman says happily.

A little while later she goes into McDonald’s and asks the counter girl the very same question.

The girl replies, ‘I’d guess about 29.’

The woman replies with a big smile, ‘Nope, I’m 50.’

Now she’s feeling really good about herself. She stops in a drug store on her way down the street.

She goes up to the counter to get some mints and asks the clerk this burning question.

The clerk responds, ‘Oh, I’d say 30.’

Again she proudly responds, ‘I’m 50, but thank you!’

While waiting for the bus to go home, she asks an old man waiting next to her the same question. He replies, ‘Lady, I’m 78 and my eyesight is going. Although, when I was young there was a sure-fire way to tell how old a woman was.

It sounds very forward, but it requires you to let me put my hands under your bra.

Then, and only then can I tell you EXACTLY how old you are.’

They wait in silence on the empty street until her curiosity gets the best of her.

She finally blurts out, ‘What the hell, go ahead.’

He slips both of his hands under her blouse and begins to feel around very slowly and carefully.

He bounces and weighs each breast and he gently pinches each nipple.

He pushes her breasts together and rubs them against each other.

After a couple of minutes of this, she says, ‘Okay , Okay ….How old am I?’

He completes one last squeeze of her breasts, removes his hands, and says, ‘Madam, you are 50.’ Stunned and amazed, the woman says, ‘That was incredible, how could you tell?’

The old man says, ‘Promise you won’t get mad?’

‘I promise I won’t’ she says.

‘I was behind you McDonalds.’F

 

15 June 2011

I just finished listening, or rather watching, Terry Pratchett’s BBC programme, Choosing to Die. I was rather dubious to start with as to whether or not I should watch this programme at all, as it deals with the actual death of Mr Smedley, who took himself to Switzerland to avail himself of the facilities of Dignitas. Mr Smedley was only 62 years old and suffering from the early onset of MND. In fact, the only obvious physical evidence one could observe was that his legs were weakening and he was finding difficulty in getting out of a chair ,although he could still walk with a stick. However, in every other respect he appeared to be normal. Interestingly, it was because there was nothing wrong with his hands or his arms that he was able to lift the glass to his lips and drink the fatal dose. The doctor present said she would not be able to assist him with that particular process. Heaven knows what they do with someone like me who has no use in their hands.

Mr Smedley was clearly an intelligent man who had researched the progress of MND and decided that he did not wish to submit himself to the indignities that the ultimate end would bring, nor was he prepared to become a burden to his family. He very bravely allowed the cameras to record his discussions with the doctors in Switzerland and his final act of drinking the fatal mixture and dying on camera.

Whilst I have every sympathy with Mr Smedley, I really do feel that he took the decision far too early. As all MND sufferers will know the pace at which the disease progresses is different in every case. Only today I was speaking ho has been in the same position for the last 20 years. The MND stopped at his legs. I agree that this is most unusual but as I understand it the disease rarely moves so rapidly that you would lose control to make a decision about assisted suicide (even this unfortunately is not entirely true, as there was apparently a young man in our village in his 20s who died within six months of being diagnosed).

The programme was very well presented, but slightly one-sided. It dealt more with the dignity and sensitivity of someone wishing to die rather than the other individual, the taxi driver who had opted for the hospice route, who appeared in the programme who took the view that it was better to try to live day by day, Carpe Diem, which my readers will know, is my own philosophy. Having said that, quite early on,. I made it clear that when the time came, and the quality of my life had diminished to such a degree that I do not wish to continue then I would try to end things. Just how, at this point in time, I have yet to resolve. What I have done, however, is to make a Living Will which in effect, states that it if I need a tracheotomy and have to be fed through a pipe in my stomach and without either will not recover to my earlier state. then they are not to either invasive intervention but to let me slip away. As I

have said before, I like to taste my champagne not have it pumped in!.

As I said earlier I thought the programmr is extremely well presented, but it almost needs a follow-up programme concentrating more on living with the disease than dying. Much more could have been made of the hospice, the very name of which is an anathema to people like me but probably that’s because we really don’t understand the whole palliative care package that one may receive in such a place. To me the word hospice means, ‘on the way out’ and not too far off at that. I certainly do not want to die amongst a lot of other people in a similar position. I would much rather fade away in the warmth of the sunshine in my own garden sipping a decent glass of champagne.

Going back to the point I made earlier about Mr Smedley, choosing to end his life. far too early. I compare my condition with his. I have now lost use of my legs; my hands are completely useless; I have about 30% use of my arms and my lungs are functioning at around 25% of their normal volume. Yet, I can still derive a great deal of pleasure out of life. As my regular readers will know I try to go to the golf club every Tuesday, if it’s fine, and drive round the course in my wheelchair having a laugh with my chums. I have been to Lord’s, for the cricket three times so far this year and have another five days to go. I went to a wedding in Cornwall recently and enjoying myself immensely. I regularly go to the Cricketers next for lunch with friends.

Of course, one regrets not being able to get up and prance around or having to be fed or having someone to help you have go to the loo and so on. But I can assure my readers. none of that is the end of the world. When my time comes I cannot say but I suspect I will know soon enough. The problem will be gaining the cooperation of my family who are vehemently against assisted suicide, leaving aside the fact that it is illegal in this country at present. However, I have absolutely no doubt that it will become legal within the foreseeable future, but with a lot of strings attached, as indeed there should be/ Whether it will come in time for me not remains to be seen.

Sir Terry ended the programme poignantly remarking that he had probably just left one of the bravest men he had ever met and cast doubt on whether he would be brave enough to drink the fatal dose himself. There is another viewpoint on this that to take your own life in the very early stages of the disease, such as MND long before you are suffering any real discomfort or inconvenience from it could be said to be a cowardly selfish action you would be imposing a great deal of emotional distress on your nearest and dearest long before it was necessary but, having said that, I am a proponent of assisted suicide when the patient themselve feels that their quality-of-life has sunk below what they consider bearable.

13 June 2011

Yesterday, was my quarterly assessment at Papworth Hospital. I went through all the usual sniff and blow tests and was not surprised to find that my Forced Vital Capacity had gone down from 49 to 42, a drop of around 15%. I’m not sure how that translates in terms of volume capacity of my lungs, which was previously 34%. No doubt I will know more when they full report comes through. According to the doctor. most of the other tests were pretty much the same.

Michael (Dr Michael Davies)) did not seem at all concerned about the fall in my FVC, certainly nothing to get concernrd about yet, although he did give me a second respirator (Nippy 3+) to keep by me in the study.. in case of emergencies, They also gave me a new mask that just fits over my nose, which is obviously more comfortable than the full face mask but it does rely on keeping one’s mouth shut at night so there is an additional strap that goes under the chin and over the head to ensure that you do not open your mouth whilst asleep. I shall be interested to see if I can manage with this new mark..

I started watching the final of the tennis at the Queens Club, whilst I was waiting for the ambulance to take me home and then was able to watch the last set on my own television. I was very pleased to see Murray win, albeit not ihas easily but it augurs well for Wimbledon in a couple of weeks time.

I spent most of the afternoon on the telephone to Microlink tried to sort out the problems with my laptop which has never been right since I installed the latest version of Dragon. In the end we decided that it all had to do with the Buddy Gooseneck microphone which do not appear to be working. Having changed that for another microphone. I then discovered that it would not work in Word so I am in for another session tomorrow-all very exhausting.

12 Junr 2011

It’s been a quiet weekend for me but a busy one for the Royal family It was the Queen’s’ official’ 85th birthday and the Duke of Edinburgh’. Prince Philip’s, 90th birthday. He is now the longest serving consort that the English royal family has ever had.

I have had the dubious pleasure of meeting Prince Philip on two occasions when I was CEO of a national housing association. I remember the last time extremely well. We were opening a project just behind Piccadilly Circus and for some reason, which I cannot recall, Prince Philip kindly agreed to open it. We had all the usual dignitaries present including I believe the Mayor of Westminster (if that is the borough that Piccadilly Circus is in!) The Duke and I were waiting in the wings to be introduced and I found myself alone with him for quite a long period of time. Prince Philip is well-known for his forthrightness and asked a lot of leading questions and from his demeanour he clearly does not suffer fools gladly. When it came to the official opening we took him around the project and, of course, had lined up one or two model tenants for him to visit and converse with. However, true to form, Prince Philip would dive off in the opposite direction to the one that we had planned and knock on the door of some unsuspecting tenant, who could well have been in her curlers, not expecting a royal visitor, plonk himself down in their armchair and start quizzing them. All very alarming both for the tenant and for me.

Nevertheless, we must all applaud the Dukes for his love and devotion to the Queen and his family and dedication to the nation in his gruelling round of official engagements. He frankly admitted that his memory was not as good as it was (whose is?) and that he intended to slow down and start enjoying himself. As he said he reckons to have done his bit!. Even at 90 he has an extremely busy list of official engagements. I believe they said on the television he had 20 such in the next 23 days. At 90 that is some slowing down!

I had planned to watch our man Murray in the tennis final at Queen’s Club but unfortunately it was rained off and will be played tomorrow.

11 June 2011

Sadly the splint which Lynne made for my right hand does not really work very effectively, even in conjunction with the articulated armrests.

The whole thing is far too awkward to manipulate, so for the time being I will have to continue leaning over to the right and using my left finger splint

Last night the girl, Natasha, a new one to us, turned up at nine o’clock to put me to bed and I was very grumpy. For heavens sake, 9.30 is early enough but 9.00 o’clock is ridiculous. I felt rather sorry for poor Natasha after she left having had her first exposure to me as a grumpy old man. I shall have to be extra nice to her tonight..

It is the open garden weekend in Clavering and for years now ‘my lovely’ has made up 20 or so little lavender posies which are sold to boost the funds of the National Gardens charity. They always go well and this year hopefully will be no different. Although our own garden is very colourful and attractive, despite our very long serving gardener Peter, at this time of year the weeds are a battle to keep down and might confuse the true cultural aficionados when looking out from rare flowers! For that reason we have never been audacious enough to open our own garden to the public..

 

 

 

 

10 June 2011

When I was at Lord’s the other day Brian Osborne delivered a lovely postcard from his daughter Kate who has spent part of her year off, before going to Durham University, working with small children in Uganda. The postcard she gave me showed half a dozen beautiful Maasai girls dressed with traditional beaded ornaments but to my amusement wearing long red modesty skirts which they certainly did not wear in my day. (See 31st of December 2010 entry). With the postcard came a little handmade straw figure, presumably representing Christ, which we are to hang on our Christmas tree next year. It’s good to have Kate back, even if she was well looked after in Uganda. She and her like set a great example to the youth of today.

Shortly after Sally and Sarah and left after giving me my shower, dressing me etc, Lynne, my really helpful occupational therapist arrived to craft a splint for my right hand, similar to the one away on the left.

The idea being that at present in order to access the left-hand side of the keyboard I have to lean right over putting a lot of pressure on my right arm and shoulder, so I thought I had the right hand finger splint as well this might overcome the problem. As usual Lane was up to the task and what she made in conjunction with the articulated arm rest I believe will probably do the trick. Having said that I’m trying more and more to use voice activation for almost every mouse movement but there are one or two which are rather tedious or difficult so I take the easy way out and use my splintered finger to press the appropriate key.

Poor Lynne I think was rather fazed by the number of my support team who turned up or telephoned while she was here. First of all the wheelchair man came to replace the broken leg support. Then a courier from Papworth Hospital arrived with the Oximeter for me to use over the weekend before my appointment on Monday. No sooner had he left than Barbara, from Ross Nursing, turned up for the midday visit which would normally be to put me into my electric wheelchair (but today the weather really wasn’t worth the risk) so she spent 5 min or so doing my tummy rubbing. While all this was going on I received a phone call from Dr Margaret Saunders about some more drug changes +2 or three other medically-based calls and all of this while poor Lynne was trying to craft and fit this new finger splint. With all this going on there is no way I could possibly say I’m not being very well looked after.

Today’s bit of fun is for grandpa’s although I’m not too sure that grandmas will be too happy about it!  

A  six year old goes to the hospital with her  grandmother to visit her  Grandpa.

When  they get to the hospital, she runs ahead of her  Grandma and bursts into her Grandpa’s  room…”Grandpa, Grandpa,” she says excitedly, “As  soon as Grandma comes into the room, make a noise  like a frog!”

“What?”  said her Grandpa.

“Make a noise like a frog  – because Grandma said that as soon as you  croak,
we’re  all going to   Disneyland.

 

 
 

 

9 June 2011

Had a great lunch, at the Cricketers pub next door, with Mark Jenkins and Simon Walker, contemporary school friends of son Miles but also my friends which I suppose is not surprising as I have known them for over 30 years, and in any event I seem to still have the mental age of 40-year-old which puts me on an equal footing so far as the conversation is concerned. I say 40-year-old but horror of horrors to be more accurate they are nearer 50 than 40. What in my youth we would certainly have called middle-aged but to me they still look like young lads.

Miles is godfather to each of one of their children. Our conversation ranged over my favourite topic, the Big Bang and the universe to the horrors that went on at school when they were ‘new guv’s’, i.e the traditional initiation ceremonies that went on for new boys during their first week. I think it was just as well we didn’t know about such things and certainly the boys would never complain to their parents, it simply was ‘not done’. Had they done so their life would have been hell probably for the whole of the first term. I suspect today much of those traditions, which can only be called bullying, have been stamped out. The boys looked after me wonderfully well over lunch – Mark happily fed me – and when we returned to the house the boys hoisted me into my study chair like seasoned nurses.

I have received the decision of the Investigating Committee of the General Dental Council. It was a complete whitewash and really defies common sense.

As, apparently, there is no appeal against this decision, I now have to consider whether to take a civil action against this dishonest dentist or seek a judicial review. The point being, as I have made all along, I am not a vexatious litigant but am simply fighting the cause for the common man (the man on the Clapham omnibus) who may be slightly overawed by a professional man and not be articulate enough to challenge him.

A little bit of fun to finish with.

 

8 June 2011

A hectic day. Shortly after the girls left after showering undressing me somebody came to service the hoist. Once in my study I tried to update my blog and found that the new version of Dragon was simply not functioning properly so it was necessary to get onto Microlink. While Carl, from that company, was sorting out my computer, I received five outside telephone calls from various medical people about appointments etc. Then the’ tummy rubbing lady’ arrived to do her stuff. I really believe that this aromatherapist, Karen, is making a difference to my bloated tummy and it would be interesting to see how much improvement is made once we get the nurses to do it twice a day as well as in the early morning by’ my lovely’. Then Harriet arrived to inform Alice that power continuing care entitlement was to half hours per day so we are now in a position to work out some sort of regular schedule. Then, at 1 AM,’ Jane the sheep’ arrived for her babysitting stint while Alice went shopping.

For the moment we have cut out the midday and six o’clock calls which were specifically to give me a short walk. Without that requirement we will have to work out some other task, such as putting me into the wheelchair otherwise I’ll find myself stuck in this study chair for 14 hours a day, which apart from being tedious will not do my body a great deal of good.