Posts by DMC:
This is one I prepared earlier as the TV chefs are likely to say. By the time you read this I shall have gone, passed away, gone before, slipped away, whatever euphemism appeals to you.
Whether through natural causes or by my own hand, you will no doubt learn in time but, whichever it was, we’ve had a pretty good run over the past 57 months when the blog has received 3,120,080 hits in the 43 months it has been running.
I know, from the many responses that I have received, that it has touched quite a number of people, patients and carers, and indeed many thousands of other people who strangely found some inspiration in it. For these small victories I was truly thankful and it gave me a reason to getting up every morning and in the end the total inability to do virtually anything for myself and my severely weakened state meant that the kindest thing was to slip away.
My darling wife, who has been so wonderfully supportive since I started going downhill around March 2008, deserves a break.
My regular readers will know that I am a confessed atheist. I doubt, like Bertrand Russell, I shall have a deathbed conversion. If I do then I say to you all, God bless you, if there is a God, and I will know before any of you.
Goodbye, and thank you for listening.
Autumn is well and truly with us. Cold dank misty mornings and no sign of the’ Indian summer’ promised to us by the meteorological office. No, this is not the time to plan those outside barbecues, or a pizza from Jamie Oliver’s dad’s pizza oven. Instead muffle up and bend to the wind, it is going to be a long winter.
From the various visitors we have had over the past few weeks, they all remark on how well I am looking or, more specifically, how much better a look, then I did 5/6 months ago. I believe that was the time I was being weaned off the morphine and looked and felt like death. Whatever the reason behind these observations, I should be thankful for looking healthier and more robust than I did six months ago. I suppose it is possible that I have plateaued, to some extent. For how long we will not know until my health changes yet again and I started to go downhill.
I can say, with all honesty, that I have not had occasion to question how I am, or do, feel when I wake up each morning. It is not something I give time to thinking about. I wake up like most people, and would only consciously how I felt if my well-being was prone to variations but that is not the case. I know that my arms are slowly getting weaker, for example I can no longer raise them to my nose which, with a continually runny nose, can be a real bore. I either wait until someone notices that my nose needs attention. Or, if I’m really desperate I call out for help. Feet and legs have gone. Arms have probably lost 90% of their movement, and only my left hand, splinted up and resting on a cleverly designed armrest, which lightens and weight of the arm, is of any use at all. So, to all intents and purposes I am quadriplegic.
No visitors today except Neil, from Possum, who returned after his recent visit to replace the new control button on the armchair which worked only intermittently.
We were delighted to hear that, what Richard describes as a slight setback, has now cleared up. Bearing in mind that Richard had, what he described as a minor setback (heart attack), some time ago we are always wary of reports on his health. Much as we love him for who and what he is, there is always the secondary consideration lurking in the wings, as to what immediate steps we should have to take if Richard was rushed into hospital for any reason. I refer of course to my mother’s situation. Her Alzheimer’s is manifested itself behaviourally and I believe she is now only really comfortable and calm in Richard’s care. I would hate to think how frightened, she might become, in the hands of strangers. Wi the th them both in their mid-90s, we can only pray that Nan goes first, which will certainly be the least painful alternative.
Having said that I really ought to discuss with Richard a plan B, so that we are prepared for the worst scenario.. With 65% of the population of this ‘emerald isle’ being over 65 years old (I think I heard by the year 2050). It is a problem facing the nation which is partially responsible for the rumbles of dissatisfaction currently being espoused by people who will be affected by the more stringent retirement rules who are clearly predominantly thinking of the effect of this situation, quite naturally on themselves. We should all thank whoever we pray to for the possibility that we can still beat this problem, whereas number of member countries in the EU had little chance of doing so, which means significant trouble ahead.
It seems entirely appropriate that I should finish today’s entry with some oddities in the English language specifically to do with plurals. Click here to see the difficulties facing a foreigner trying to master the English language.
There were no ill effects with the first of the beta blockers, I took yesterday, so we repeated the dose today. We can only be satisfied that I am not suffering from any of the side-effects until a week or so has gone by, but, so far, so good. They do not seem to have changed my pattern of sleep, which is a blessing. one way, but a burden the other.
I wake up has always around 5.00 and 5.30 a.m. now, and on this new arrangement I lie in bed until one of my morning helpers arrive which means that I actually lay awake around one hour long than previous. I am hoping that my body will adjust itself and allow me to sleep soundly through what is chronic pain emanating from my joints.
What people normally do not seem to fully understand it is that if the alarm is only an inch or two above my hand, depending on which side I’m lying, I do not have the strength to raise that hand, even 1 inch in order to set off the alarm
Both Smiler and Kimberly came down for lunch today. It was an almost unique situation as it will usually be one or the other, but rarely both. In any event, it was lovely to see them both. I am afraid Smiler, who generously offered to help me with a problem on my blog spent a very good part of his time with us trying to help me. Compare my blog diary – that is the hard copy of the blog – before it gets published with the published blog. The astute reader will have noticed that there was no 19th October entry and two for 17th. October. I have nearly sorted out and will certainly have done so by the end of this week.
There were no ill effects with the first of the beta blockers, I took yesterday, so we repeated the dose today. We can only be satisfied that I am not suffering from any of the side-effects until a week or so has gone by, but, so far, so good. They do not seem to have changed my pattern of sleep, which is a blessing. one way, but a burden the other. I wake up has always around 5.00 and 5.30 a.m. now, under this new arrangement, I lie in bed until one of my morning helpers arrives which means that I actually lay awake around one hour longer than previously. I am hoping that my body will adjust itself and allow me to sleep soundly through what is chronic pain emanating from my joints.
What people normally do not seem to fully understand it is that if the alarm is only an inch or two above my hand, depending on which side I’m lying, I do not have the strength to raise that hand, even 1 inch in order to set off the alarm. The fact is the weight of the bedclothes, is more than my weakened arm can cope with. Once bedclothes are in place and totally immobilised.
Both Smiler and Kimberly came down for lunch today. It was an almost unique situation as it will usually be one or the other, but rarely both. I felt rather embarrassed when they left shortly after lunch when I realised that we had spent the best part of their visit trying to resolve a posting problem of my blog diary. It was not as if we had been successful, even after spending those couple of hours on the problem we were no nearer resolving the problem. Smiler takes an entirely approach to this blog diary so far as he is concerned, once the day has passed anything written about that day is history and of no significance, other than the effect on the current day. I find this to be a strange response from someone with an historical bent. Truth and accuracy of the contemporary observer has to be the best evidence of what actually occurred. I use this trivial issue to illustrate the importance I place on my own approach to such matters. To me it is of the greatest importance that any report has been recorded contemporaneously and stop this chronologically.
I battled away with this problem or an hour after they have left before succumbing to the respirator, for an hour or so, as recommended by my Papworth consultant, Dr Michael Healy. There is no question, in my mind that the short bursts in the respirator,, during the day, have improved my breathing, perhaps this is in combination with the increased pressure prescribed by Dr Michael Davies.
Later, that afternoon, ‘my lovely’and I enjoyed catching up with the latest episode of Downton Abbey, filmed in Highcliffe where that other greatly series was played out last year.
A quiet weekend, no pressure. A chance for me to find something on TV that will allow ‘my lovely’ to catch up on some of her missed sleep.
My first day on Beta blockers so I was quite anxious to see if any of the range of adverse side effects afflicted me or whether the Beta blocker would quietly blend in with all the other pills I have to take, this one for heart and breathing, both of which, could take all the help that is offered.,
Spoke to Richard (Marsh) last evening to find that he had suffered a minor setback with his heart. We are extremely lucky at having my very old friends, John and Anne (Prytz) who live relatively close by and have been calling in daily to keep an eye on them both. We are extremely grateful to them. They could not be any kinder if my mother and Richard were their own kith and kin. With both of them in their mid 90s, for every day that goes by without mishap, we give thanks. I feel so helpless myself. Instead of being a rock on which my mother and Richard can rely, it has turned into a question of which of us goes first. We really must sit down and discuss, with Richard, the various probable scenarios so that at least we know we are following their wishes.
One important issue upon which I have touched with both Chloe and Miles, is their quality of life in 20 or 30 years time. In a relatively short timescale this country will have more Muslims than indigenous’ Christians’. The point being that the Muslims seem to favour large families whereas the non-Muslims either have no children at all, or will restrict themselves to 2, hopefully one boy and one girl. It is not hard to see that the time is not off when the number of Muslims will exceed the non-Muslims. There was a classic illustration of this in the tragic case of the Muslim family caught up in a house fire yesterday. The mother and four the children perished in the flames leaving one badly burned child and the father. Subsequently, the poor little child succumbed and died leaving only the badly injured father. So far as the child was concerned , one cannot but think it was probably a mixed blessing. Having lost her mother and all her siblings and to cope with that on top of the many operations that would be required to restore some of the areas of her body to as near as normality as possible, frankly, one could not help feeling she was better off having joined her siblings. The poor house farther still has to face the agony associated with the loss of his family as well as probably years of remedial operations.
The point I set out to make, however, was illustrated by the size of this family-five children. There was a time when five children would not seem excessive. I think Queen Victoria had nine. Certainly in my own family. some of the great aunts and uncles. had children running into double figures. Given the present situation, then it can only be a matter of time when the Muslims outnumber the non-Muslims and the indigenous population of this island falls into a minority. What then will we do about this and how can we preserve our culture and traditions. It is no good waiting until the day dawns when this problem is upon us, but some sort of planning ahead is necessary to salvage what we have and what have are from this prophesied state of affairs. So Click here to illustrate the point.
It is all very well, the Prime Minister, declaring to the world that we are a multicultural society, which sounds idyllic but when the chips are down it becomes a battle between the Muslims and non-Muslims. This is a problem to be faced, and worked out by my grandchildren’s generation, but, in the meantime, we should also be making whatever preparations may safeguard our way of life, so that the indigenous population, their culture and traditions do not get swept away.
Paul’ the computer’ came after lunch today to relieve ’my lovely’. As we are pretty well up-to-date in tweaking the computer Paul and I sat back and jointly enjoyed my daughter Chloe’s birthday present to me, a boxed set of DVDs covering the Hornblower series.
Life under the sail at the end of the 18th century when Britannia really did rule the waves and Britain was enjoying a level of success probably not exceeded before or after that period. The storyline covers the career in the Royal Navy of Horacio Hornblower from his early days as a midshipman – the lowest officer rank – to Captain (or is it Admiral?) I shall not spoil my enjoyment of watching these series to find out which. In any event, it covers a period towards the end of the 18th century and the end of the Napoleonic Wars. It in no way attempts to soften the life of these heroic figures, who through their dominance of the sea, shaped the control of many countries until the middle of the 20th century.
I mentioned to Paul how good was Windows 7 and how most of us cannot even touch the full facilities available through this programme. I really ought to spend time working my way through the various options offered on the tabbed bar at the top of each page. I would advise anyone using Windows 7 for the first time, to spend a little time to get acquainted with the options built into by the software designers. Inevitably, most of us just plunge into the programme in the specific area on which we are currently working and as a result fail to test run other options. We are all guilty of this, so I make no apologies just copy what I say, not necessarily what I do.
Did I mention that we were told quite recently that we had been granted (awarded!?) an extra one hour per day on our continuing care program. The readers will recall one of the main conditions, giving you this extra time is that the patient is most likely to die within 12 weeks. This latter condition is in the lap of the gods but must be based upon some statistical record, so here goes to try to mess up their statistics.
One of the nurses in Papworth Hospital, told us of patients who had survived for longer than the three month provision.
One who went 13 years and another 20 but I suppose balancing all of these responses there must be solid evidence driving the average figures down below 12 weeks. Let you me see where would 12 weeks get us? Well, roughly to the end of this year, so we will see. We can only possibly plan a week or two in advance and then there’s the Medicare side of things, who might say that I have plateaued in any particular area and specifically my breathing. The good Dr Michael, from Australia suggests, the way you are progressing. you will just fade away. A bit like having a pleasant anaesthetic. Nothing dramatic or unpleasant. Choking is unlikely to be the cause. That all sounds fairly satisfactory and nothing to worry about when is this fading away likely to affect me? How these doctors can be so specific about such dramatic milestones in one’s life, defeats me. The only way that one trusts the description on death would be to die and come back and describe it. No doubt my medical readers will read about this and hopefully provide some more concrete evidence upon which patients and carers alike can feel comforted by.
Smiler and Kimberly are due here tomorrow for lunch and I will continue to discuss what he needs to do on my demise, although I’m pretty sure I’ve covered most angles. Unfortunately Suffered Life, who are responsible to the government for keeping an eye on my pension , ensuring that it is within the parameters laid down, do not work at the week so I will have to check this out on Monday.
When I was being shaved this morning, by Craig, my key carer, he politely enquired what arrangements had I made to have the hair in my ears trimmed. The short answer is I have no such arrangement. Before I was struck down with MND I attended to such things myself with a special razor which was also designed to trim nose hair and eyebrows.
The regular reader will recall my battle with Essex County Council to run a free at home, finger and toe nail service for the elderly or those who were confined to home through some disability or other. Ultimately, in conjunction with my MP Sir Alan Hazlehurst – I managed to get the County Council on side and make this provision free, or for a notional fee, for all the elderly within their domain.
As a potential beneficiary of such an agreement I would have expected by now to have received notification as to how to take advantage of it. Not having done so I will contact Sir Alan again and perhaps he can get the assurance I am missing. At the same time. I may raise the issue of nose and ear hair.
Some time in the night of 16 October the 3 MILLIONETH HIT on this blog took place. The number of readers has grown very steadily from the beginning and now runs at 3500/4500 daily. By the responses I receive it is quite clear that this blog is being read by people all over the world. I have often wondered whether I was wasting my time, but it is quite clear, from the comments I receive from the readers, that it seems to appeal, or even inspire, people in different parts of the world. From the daily hit rate and based on the broad assumption that the majority of readers click in every two/four weeks, although it is accepted that a large number of them look at it every day, the actual number of people following the blog could be around 40,000 /50,000. Even if there is one lunatic logging in every single day at five-minute intervals that would only clock up as around 7000 hits a year, so it can’t be that and so I can only conclude that there is a genuine following. I am disappointed, however, at the number of comments I receive, particularly when I tackle a controversial subject, where there are two opposing views. However, my readers have their own views on the topic, but rarely share them with the other readers. The only conclusion I can draw from this is that the loyal readership is content to read the opposing views, but does not necessarily want to get involved themselves.
I remind my readership, from time to time that, so far as it is possible. I do not express a view on matters that might be said to be politically incorrect and again, so far as possible, I’ll avoid matters touching race, colour, creed and ,religious belief, so with these restrictions the entries can sometimes appear to be anodyne. This is particularly so when it comes to my little bits of fun that I frequently add to the end of an entry, which are there purely for amusement and to get the reader to forget their own troubles for a minute or two and if I’m lucky get them to laugh or wonder.
If I had to summarise my impression of the effect that the blog has on its readers, I would be hard pressed to avoid saying that on the whole readers find the blog to be inspirational. I hope I am right for this was the objective when I started it for years or so ago, to inspire even the sickest person to fight back and, so far as possible, enjoy every day, carpe diem and all that. I do seriously believe that this objective has been achieved and in that respect I am well pleased with the outcome.
Of course, this blog has a finite life, tonight, tomorrow, in a months time, or even in a years time. when I drop off the perch I expect the interest in this blog to dramatically fall away . My good friend, Richard Morris, who designed the blog, and is what I believe we call my Webmaster, has very kindly said that he will keep the blog is running for a few years as his personal tribute to me. Statistically, I am now in the elite circle of people who survive more than five years from diagnosis. I am cheating slightly as I was in no hurry to have confirmed whatever was wrong with me after the initial signs became obvious.
It started with the weakness in my left arm, noticed in the gym but for which I did nothing knowing I would have my annual BUPA check in January.this medical checkup confirmed that there was something seriously wrong, which lead to extensive tests, which ultimately, in March 2008 was confirmed as MND. I count my five years from September 2007 when the weakness in my left arm clearly indicated that something serious was wrong.
You might be interested to learn that I wrote the final entry a year or two ago, just in case I did suffer an untimely demise and I never like leaving loose ends. I’m sure of what I wrote, or some long time ago, will still fit the Bill but I must confess I have not checked this final version but am quite certain that it makes all the right noises.
To finish this in retrospect I give you an example of the sort of joke I might include at the end of any of my entries. Click here and see for yourself. Totally inoffensive I think you must agree and, in fact, not particularly amusing. Bear with me the jokes can only get better!
I’m sorry to report that I have nothing more exciting to record than the fact that I had a visit from Althea, the lady who cuts and files my hand and feet nails. So far as my physical condition manifests itself I can honestly say that my breathing has improved. The tightness in my chest appears to have eased, or gone altogether, and I have had no periods when I’m like a fish out of water, gasping for air. In fact, I have found it hard to justify spending time in the morning and afternoon resting under the respirator. but that is what the consultant at Papworth suggested I did, so I shall go along with him. The only thing I can say in favour of following the consultant advice, is that using the respirator sporadically, does allow me to commerce longer without getting worn out. The best I seem to be able to do, at present, seems to be between half an hour and one hour.
I am now getting to that stage where I would like to know how the team expect me to die. It is all very well saying from ‘respiratory failure’, but I suspect it means that, at some stage, my heart will be too weak to allow my lungs to work even with the help of the respirator. I must remember to ask the Papworth people next time I’m in contact.
I know that the crude statistics show that half of the number of people diagnosed with MND die within 2 ½ years and the other 50% within five years of diagnosis. In my case, there was quite a long time between the disease manifesting itself and having it probably diagnosed. In fact, I notice the weakening in my left arm in September 2007 but it was not formally diagnosed until March of the following year. However, for my purposes. I shall take September 2 007 as my benchmark, this then means that I have already passed the five years and am entering into unknown territory. Although I do get fatigued, particularly in the evening, I cannot honestly say I am so weak that I feel that I might as well be dead, although sometimes I get close to it. The next few weeks will, I believe, give us a fair indication of where I am going.
Alice has been taking my blood pressure for the past three days on Dr West’s personal monitor which you lent to us. The outcome has shown a great diversity. The worst being187/105 and the best this morning 136/71 This latter reading would be the sort you might expect on a healthy young athlete so it will be interesting to see what Dr West makes of them.
Talking of the young man, particularly when it comes to dying, click here to see one of the most amazing aeroplane break-ups for which the pilot was given no warning. In fact, he survived unscathed.
Another week, but one based on the old time of 2 ½ hours, from outside carers, per day. I can understand that it might take a few days shuttling people about in order to add the precious extra hour, we have recently been awarded and adjusting our times so as we get the full benefit from them. I must be honest, I still watch the clock for the last hour or so, before I go to bed, as this is the time that I begin getting edgy and uncomfortable for no other reason than my ‘jug of energy’ is exhausted. However, I do not want to do what ‘my lovely’ suggests, and go to bed an hour earlier, leaving the possibility that I would wake up an hour earlier and have to live with the pain in my joints for that extra hour.
Without any way wishing to be cruel. I do believe all the carers, who have to use the sling hoist on their patients several times a day, should allow themselves to be put in the same position as, their patients and go through the process, from bed to commode; from commode to wheelchair and from wheelchair to lounge chair, including making the odd mistake with the length of the sling, just to give themselves some idea how vulnerable their patients are. This, in their healthy state, leaving them to imagine what it would be like if, on top of everything else they felt weak and unwell.
The promises of sponsorship, for the Ben Nevis climb, are still dribbling in. I am pleased to report that the initial target of £2000 was exceeded some little time ago and hopefully we will now manage to break the £3000 barrier. For those of you who intended making a donation and never got round to it, it is not too late. The book does not close for another month or so. If you have lost the form, then may I suggest you can make an online donation through http://www.justgiving.com/sarah-emily-perkins. In anticipation may I send you our combined thanks.
I received an email today from the wife of a much beloved MND sufferer, very sadly, no longer with us. The substance of the email was to record that a group of the patient’s friends got together and organised a concert at Aldeburgh and to date have raised over £5500. I think these events are wonderful in that they celebrate the life of the loved one in a manner which contributes to towards the research being carried out, to rid us from this horrid disease. I have been extraordinarily fortunate in my friends giving their time and effort in running such events. The Great London Swim and now this Ben Nevis Climb.
Following our last visit to Papworth when it was noted that I was suffering from high blood pressure, Dr West very kindly loaned her personal blood pressure monitor to us, so we could take regular readings over two or three days. Having this information would enable her to decide what course of action to follow.
Working on the basis that in a healthy person’ normal’ systolic pressure would be 140 and the normal diastolic pressure would be 90, our results have shown my systolic to range from from 70 to 105. Heaven knows, what conclusions Dr West will draw from these results. We received a telephone call yesterday from Papworth telling us they will be dropping off an instrument for us to make some recordings for them. I suspect it is the finger clip that I wear at night to monitor the amount of oxygen in the lung blood. I seem to recall Dr Michael Davies saying that provided this did not fall below 90 there was nothing much to worry about but as we were wavering about in the low 90s perhaps he is being ultra-cautious and attempting to pre-empt any problems which might occur from this particular symptom.
In the recent exchange of emails with the good Dr Michael, in Australia, it would appear that although he is ready and willing to come and spend a week or so with us in November, that is, subject to how his son Tom is getting on at the time. He is part way through the preparation for stem cell therapy, so just how that will fit into things we can only see. Clearly, Tom must come first when it comes down to Michael’s. priorities. Whether or not they will know anything about the course of Tom’s treatment in couple of weeks time, which will take us to the beginning of November, remains to be seen.
Paul the ‘computer’ came over the lunch period. I knew that ‘my lovely’ was going out but it was not made clear to me, until she returned, that she had been gallivanting about and attending yet another golden wedding anniversary (Ba and John Goldworth) Lucky ol’ her. My problem is that I can’t even go to funerals – which are becoming more numerous – mainly because there is no wheelchair access. The same applies to most parties. Very few houses, in fact, are completely step free, which makes attending parties, very difficult. We did go to a couple of parties this summer, but I am only too aware what a nuisance it is for the host. Therefore, although I still get invited out of courtesy, my party days are over. This will not be a great loss to me. When I was at full strength there was nothing I enjoyed more than a small dinner or supper party, say, with four couples, where good conversation took place and some lively controversies were argued out. As for Paul and I, I thought it about time he had a break from fiddling around with my laptop systems, so we settled down and watched the first episode of Hornblower, which Chloe and family has kindly sent to me for my birthday.
As I have mentioned in the past, my daily calorie income has shrunk to probably less than 1000 a day, which is what a human being needs just to survive. Concerned about my weight loss-I would guess that I am somewhere between 10 ½ – 11 stone – Dr West has prescribed some calorie supplement. Its commercial name is Fortisip Nuticia. It describes itself as a very high energy Nutritionally Complete Completa hypercalrica. 24 kcal/ml. The good news is that it comes in four flavours. Banana; vanilla; strawberry and one other. It is not too bad to take and, in my case, quickly made me feel as though I’d had a good meal. I will stick to the doctor’s recommendation, at least for the time being, and see if the added calories give me more energy