The matter had been complicated by my mouthful of ulcers which required a dose of cortisone tablets plus as, well, an antiseptic mouthwash four times a day, I think it transpired that the cortisone clashed with the tramadol or the amitriptyline or something of that nature, this combined with the withdrawal effects from the morphine played havoc with my constitution. As I am still taking most of the pills prescribed all recommended by one or other of the team, I asked Doctor West if she would kindly speak to to my MND coordinator, Jo Sasson; Doctor Michael Davies, my Papworth consultant and Doctor Margaret Saunders, the head of the Arthur Rank hospice to ensure that the combined effect of the medication was fully considered. This she is already getting to grips with and has changed some of the medication to good effect

I was somewhat alarmed yesterday when I heard them both Miles and Chloe were coming down to see me. I was so bad, particularly with breathing that I suspect’ my lovely’ thought that the end was nigh the children should come down just in case!. They did that and we passed as pleasant a day together as we could, under the circumstances Smiler left after tea as things looking reasonably settled. Back towards late afternoon my breathing became more and more difficult and my throat was drying up to completely parched, like the desert, within 5 min of removing the respirator, which with medical advice. I had been using intermittently throughout the day. I made it clear that there was no way I was going to bed that night with a respirator under which I could dry up my saliva completely in a few minutes without any knowledge of the long-term effect

After more telephoning around, Doctor West, who had been marvellous, suggested some slight adjustments in my medication and armed with that and the knowledge that Chloe kindly agreed to spend the night and help her mother should she have any problems, I went to bed. As it happened I had to sound the first alarm around midnight from chronic pain in my foot and the fact that my tongue had virtually stuck to the roof of my mouth under the respirator and I desperately needed a drink. This meant that they had to get me up in bed, sitting on the side while say, administered some more of the morphine medicine, prescribed by Doctor West and then refit the respirator to settling down again. After that, I can honestly say it was a good night, that being the night of the 16th.

The following morning I certainly felt less ill than I had on the previous two days. The nausea virtually having disappeared. I spent a very quiet day generally listening to music while wearing the nose only respirator.

Although I was clearly on the mend it was a day of great sadness as it became quite clear that I would not be able to go to Lord’s, for the Second and Third Day of the Test Match, against The West Indies. Quite apart from missing the cricket itself, the opening of the international series, which I do not believe I have done for 37 years, was the disappointment in not being able to entertain my good friends in particular, my oldest friend , 95 year-old GAH (Geoffrey Anscombe), and on the Saturday my good friend John Gray in the event, England all but bowled out the West Indies, on the first day, finishing with 243/9. The highlight of the day from the English point of view was Broad’s five wickets although Anderson was probably the best-known of the day but was only rewarded with two wickets.

We had a call from Doctor Gem, came to check out one or two things about my medication and also to examine my feet, presumably in the hope of getting to the bottom of the severe pain which had resulted in raining night after night over the past few weeks.

We also have a visit from Neil, that people who provide although alarms stop he managed to make one or two changes which hopefully will mean that however feeble I get I will always be able to call for help. I must say, Neal has been extremely helpful and innovative in this respect.

I went to bed at 8.30 and managed to sleep through until 3.15 which was great for me as well. as for ‘my lovely’

I hope to the up to making my normal type of blog entry within a day or two. In the meantime, click here to see when a Member of the European Parliament met his match with the Scottish Farmer.

I’m sure however faithful you are some of the readers will be only too pleased not to have so much wordage to plough through!

As a compensation I suggest that you click here for some very beautiful and tranquil pictures.

Decided not to go out into the garden in my electric wheelchair, after all, as the temperature was around 12°C and there was a chilly wind. Apart from that I still felt pretty drained by the withdrawal symptoms I had suffered from the morphine side just took a quiet day.

I didn’t want to start off this entry, moaning about my condition but, for the sake of completeness, despite my new heel protectors I had a similarly painful and uncomfortable night again which, distressed me more than I can say as I constantly woke up ‘my lovely’. As a result I then they lazy day marked feeling like doing very much at all.

Click here for the sort of thing that we all need when we’re feeling a bit low.

She quickly realised I was panicking through the inability to get sufficient air from the respirator and within seconds got me sitting up and had ripped off the respirator so I could try to begin breathing naturally. This is the second time readers will recall that this sort of thing is happened. I sat on the bed, being cradled by’ my lovely’ until I could breathe normally. This took about 15 mins. Then, she got my legs over the side of the bed and propped me up using our old sponge bed armchair, which I can use for sitting up in bed unaided , she then swapped over the respirators to put me back to the full face one, which I had abandoned a day or two before in case I had been sick with the possibility of having been drowned in my own vomit. Once she had fitted the respirator and I was breathing calmly she went through the normal process of putting me down again.

An hour or two later both heels started to become painful until they had reached an unbearable level. I hung on as long as I possibly could but had no choice but to ring for Alice yet again, and turn me in the bed, rearranging my feet on a cushion, in the hope that that would help, as the change of position made me feel as though the heels will probably be okay, Alice went back to bed, but within 20 min or so, I had no choice but to ring for her again. having been in agony from the time she had left previously. Another change of position and a pillow placed between my legs which alleviated the severe pain for a short period but then it began to build up again. I had no choice but to ring’
my lovely” yet again. She rearranged me that there so that there were no pressure on the heels and then went back to bed for the last 20 min of her almost sleepless night.

I felt really bad at having messed up another of’ ‘my lovely’ nights sleep. Certainly there’s never been one as bad as that. If I had had to be taken to hospital for the night, as had previously been suggested, I think I would have gone mad. I know how the wonderful nursing staff are in both Addenbrookes and Papworth hospitals but even their patience would have been tried once or twice too often over the night and I think I would have just had to have lain there, moaning until the day shift came on at seven o’clock.

Everyone says what a wonderful person Alice is and of that there can be no doubt. These particular incidents being a good example of her care and selfishness. I really do not need to be told how lucky I am to have such a wonderful wife, I know only too well how blessed I am in that direction. However, for Alice’s sake, as well of my own, a resolution of these nightly problems must be resolved very quickly, before Alice becomes totally exhausted by the lack of sleep.

I went through the usual ‘getting up’ procedure with Louise and Sam, two of my Ross Nursing carers. They got me into my study chair where I struggled for almost 4 hours to update my blog. Moving backwards and forwards to correct the text as I went along I found quite exhausting, as I did even raising my hands to wipe my nose, which was actually running. So I think I have been severely weakened by the events of past few days events, coupled with the fact that I had nothing substantial to eat for days,

In fact, any small movement like extricating my handkerchief under one of my legs, sitting in the study chair is making me gasp for air which takes a minute or so to settle down. I think I might be suffering from a post traumatic stress disorder following the second close shave last evening when I panicked over not getting sufficient air through the respirator. Even, as I accept, this may be psychosomatic there is still little I can do, at this stage, to convince myself that I won’t be caught out again and this causes me to gasp for air. I suppose that I am fearful of finding myself in the same position again but not being able to call for help or due to my useless hands and weak arms, struggle and find I cannot remove my mask. Frankly, it’s a bit of a nightmare which I have somehow got to get through and rationalise or find myself almost permanently on the respirator.

Whereas last week I was really looking forward to my days out at Lord’s with my cricketing pals and was fairly confident that I would somehow struggled through to August, I am already sceptical about the two days already organised for next weekend. I know I must at least take my respirator with me.

I’m sorry that this is such a dreary entry but when I started the blog four years or so ago, I promised I would tell it as it is, but MND sufferers and carers reading this must remember that we are all different. What affects one patient in a certain way will not affect another in the same way..

For a few moments diversion, click here to watch a short video of  this magnificent bird of bird, the osprey . Osprey on the hunt.

I struggled through the day and managed to take a fairly normal light lunch. In the afternoon I received an e-mail from one of my powers thanking me for inviting him to Lord’s on a specific day which we did not have recorded and in fact there was no test match on that date. This through me into a spin as I thought I had allocated all of the cricket tickets with Chloe the previous weekend and was only waiting for stamped addressed envelopes to send them off.

As I had had a very disturbing day ‘my lovely’ very came through with shining colours and took over sorting out the last half a dozen cricket tickets for me. The problem being that I had used up my’ jug full of energy’ fairly early in the day and found it hard to face problems such as making a mess up over the dates inviting friends to come to Lord’s, he whole issue having been complicated due to only having received my wheelchair enclosure tickets, a couple of days ago. 

I had a reply from the pain consultant at Addenbrookes, Doctor Marc Abrahams. and also a useful e-mail from Doctor Michael in Sweden which I shall forward to the other members of the team to help them on a consensus view of the best way forward.

Due to the stress I had been under during the day I found myself very breathless and uncomfortable in the late afternoon and Alice very sensibly, following through from previous advice from Papworth hospital to use the Nippy respirator during the day, if I got particularly tired and breathless.

I managed to eat, and keep down a light supper and I was glad to go to bed at 8.30, as the amount of tension that I had gone on during the day caused my back muscles to tighten up and I was uncomfortable. I decided I will be much happier in the nose only respirator as there was still the possibility that I might vomit during the night. Big mistake!

Click here for a chuckle after all dreary business above.

So, I survived the night relatively pain-free-so much for the morphine patches! I got up at the same time and went through the normal process of breakfasting, shaving, teeth, hair and nasal spray before being hoisted wheeled into my study.

I say breakfasted, this comprises one Weetabix and a cup of coffee having been preceded by a Borocca drink and some fresh orange juice

To be honest, I still felt week and feeble but at least not nauseous. Whether there are any side effects of coming off the morphine patch I live to find out.

Apologies to my friends the Gordons – Cecilia and Douglas – who regular readers will recall are part of our’ oldies’ group, living close by – who came yesterday morning for a scheduled our with me before lunch. I clearly wasn’t much fun but it is so very kind of people to take the trouble to visit and chat to their old friend who is sitting with them rather like a zombie.

First thing this morning. Alice and I agreed that we would cancel tomorrow’s scheduled lunch, at The Cricketers, when the other half of the Mother Club’s committee, who missed out last time, land the come down to give me lunch. Although there is hopefully a good possibility that I might feel well enough tomorrow, even a quiet lunch, coupled with the normal dressing, hoisting etc, I find exhausting and therefore I am not prepared to tackle it unless I feel 100%. bearing in mind the majority of those coming down tomorrow are busy working men, who are scheduled to take a whole day out of their busy schedule, which I consider is extremely generous, the least I can do is to cancel early enough for them to try to resuscitate any appointments they may have cancelled in order to make this visit.

So, the day with me feeling progressively worse as time went by. Alice called to the local Doctor, Doctor Lort whom arrived to see me at around 1.30, by which time I was feeling pretty wretched. I could not face when she again. The Doctor suggested staying here at home with regular visits or going to Addenbrookes to be observed there. I had no hesitation in saying I wanted to stay here. The Doctor kindly brought me some antiseptic mouthwash to start taxing the ulcers which is burst out on and undermine time and all cross the back of the front skin, forming the lower lip. I was convinced that I had a temperature, as I felt hot and clammy which made me feel as though the odd bit of sweat was running down my back. She tried to take my temperature but apparently her thermometer was up the creek.

So, I stayed at home progressively feeling worse as the hours went by .’ My lovely’, as usual, was absolutely marvellous. She kept me provided with several towers and a small bowl which to be sick, if I needed to be. A call to Ross Nursing produced Judith a fully practising nurse of some 40 years experience. Even she, was not sure what the best move would be the best for me. Even,’ my lovely’s patience became exhausted so she telephoned the local surgery once again, asking the local Doctor, doing his rounds, to be good enough to see, what condition I was in and what was the sensible to take now. He arrived, around 5.30, and after a superficial examination said that he was not sure what was the cause of my extended stomach but accepted that it might well be withdrawal symptoms from the pain patches. He suggested that I immediately took a tramadol pill which should reduce the nausea He said that I had three options: I could stay at home on my present medication without the patches and see what happened all I could do to Addenbrookes Hospital and be observed there. I made it very clear that I did not wish to go to Addenbrookes and was quite happy just to stay at home and at the best nursing you could possibly hope for, with ‘ my lovely’. With this course of action decided upon, the good Doctor left me to resume my normal evening course of action.

When it came to supper, the best I could do was to eat a small bowl of broccoli and spinach pie, what was well I might describe as a cats version. I managed to keep that down, still remaining very weak and nauseous. However, I was very pleased to note that the nauseous feeling was beginning to lower, I kept in this fragile state until they managed to wheel me through, to my bedroom, at 8.30, where ‘my lovely’, performing her usual nightly rites, soon had me tucked up, comfortably in bed.

And so, another day has passed, but, not without any more ‘alarms and extensions‘

There was no way that I was going to do this unless forcibly dragged to the ambulance. I know the doctors and nurses have been extremely kind to me on my one-day in Outpatients, but I really do not want to spend the night there. I think I would have tried the nurses, patience in asking them to turn be so often. So after resting with the nose only respirator, for an hour or two, we decided to risk putting me to bed. I was handled gently and settled down, quite quickly, surviving the night.

By morning I didn’t feel at all bad but still very weak. Late morning the nausea returned so I suggested to’ my lovely’ that we called in our local Doctor Lort. I really felt very rough around lunchtime but forced myself to take down half a cup of soup and a single slice open sandwich and happily I kept them down.

In the meantime Alice had rung the surgery and asked Doctor Lort if she could  kindly call in after morning surgery. Alice had some shopping to do so was not here when the Doctor arrived (I had been left in the tender care of Jane ‘the sheep’).

We discussed my medication and particularly in the fact that I only put on the second patch prior to going to bed. Doctor Lort suspected that it was this ‘on off’ on business with the second morphine patch which might be the culprit for the nausea, so suggested I put two patches on per day and left them there and, at the same time, left of the tramadol. It seems it is a matter of trial and error. Unfortunately, to add to my misery. I had developed a mouthful of ulcers, for which the Doctor got me some antiseptic mouthwash.

I spent the best part of the afternoon and evening dozing as I did not really feel to doing anything else. When it came to suppertime again, having no appetite and feeling nauseous. I couldn’t face anything. A couple of hours later I managed to read after Weetabix as some of my medication is labelled’ to be taken after food’. As the evening wore on I felt more and more comfortable and was continuously clammy and hot, this despite all the heating having been turned off.’ My lovely’ read right through the symptoms and side effects of the morphine patches and they all pointed to the side-effects from which I was suffering. This being so she took the bold step of removing the one patch I had on instead of adding to it.

Craig was the Ross Nursing carer designated to come into put me to bed and as he was passing around 8.30 at his dropped in to ask whether I would like to go to bed now or scheduled time of 9.00. I gladly accepted the earlier retirement time.

After that ‘me, me’ tirade – for which I make no apologies  as the whole raison d’être of this blog comes down to what stages an MND patient might have to go through before his demise. I promised my readers full honestly if this blog is to be of any real help -   my readers deserve at least a little chuckle, so, click here, if you want to learn how a village priest succeeded in ‘politely’ calling his golfing partner a bastard!

Despite Alice telephoning the local surgery mid-afternoon on Thursday, requesting a call back from the Doctor, we heard nothing. I saw no point in contacting the locum for the weekend, who would have no knowledge of my general condition and, as we have seen from the newspapers, was probably shipped in from central Europe somewhere – because our own doctors are paid far too much to make it worth their while to give up their weekends – and therefore may have limited English. So not having heard from any of them, we just went ahead and took a chance. However, I merely point this out as it is inexcusable not to, at least , make a quick telephone call to the patient who is obviously likely to do himself some considerable harm if he overdoses on one medicine or another.

What concerns me a little bit is my loss of appetite. Again last evening, for the third night running, I could only face one mouthful of the main course and pudding, again feeling slightly sick.

I know that the Addenbrookes team are very keen that I should keep my weight up, as I suppose by eating very little you can weaken your whole immune system. They recommended that I took some calorie added pills to counter act any severe weight loss. This was the result of the Papworth assessment, last month, which said I had lost 8 kg over the preceding three months. Frankly, I think they got this wrong, but the next test, in July, will confirm this.

On the international front the German President Merkel has been overthrown by a left-wing socialist, as has the centre-right, President of France, who has been replaced by Mon. Hollande, who we are told, is centre-left. As a result of these two changes it will be interesting to see the effect it has on the Euro and the perceived strength of the Eurozone as a unit, on the international monetary front. The Euro itself has been dropping quite dramatically and I believe yesterday was down to 1.24 against the pound, where previously I recall it having almost reached parity.

On the home front both Alice and I were horrified to hear, on Farming Today, on Radio Four, that farmers are going to be paid for looking after their animals properly, what used to be called ‘good husbandry’. The implication being that they may not presently be doing so. What an absolute nonsense. Surely any farmer, worth his salt, is going to look after his animals in the proper fashion. So far as farming is concerned, nothing surprises me any more. First, we had the fiasco of the set-aside land, when farmers were paid not to use perfectly good farmland as we were overproducing. This in a world where a fifth of its population are literally starving! Remember the butter mountains and the wine lakes-it makes you sick to think about it. Then, after releasing the wine lakes back to mother nature, they destroyed the butter mountains and other vast storage of meat and other food, it was decided that the farmers should be paid to bring back set-aside land. This crazy U-turn business was applied to grubbing up the hedgerows so as to create minimum of 25 acre fields which would be easier to harvest. In the event the wildlife lobby managed to persuade the government how important it was to maintain hedges where birds and insects could breed. As a result, the farmers were then paid to replant the very hedges they had previously been paid to grub up! I am sure that there are a great number more of such nonsenses, the cost of which is always picked up by the poor old taxpayer.

 I do not want to be to hard on the farmers, who takes is stance from whatever the Ministry of of Agriculture and Fisheries (or whatever the relevant government department is called ). Click here to see and rather amusing prank played by some farmers in  , Canada .

Anyway, this morning, after she had breakfasted, Chloe very kindly gave me a hand to finally sort out my cricket tickets and, in particular, those which have been sent to me to give the exclusive rights in the Wheelchair enclosure.

Then she left mid-afternoon yesterday we managed to sort out to whom these cricket tickets were allocated and from whom I required a stamped addressed envelope.

I then had the idea of pasting the first five entries for may from the published blog back into the diary.which just left this mysterious 6 May one missing. Chloe was of enormous help to me as I can no longer physically handle the tickets as a result of my weak arms and hands. As always it was lovely to see her here on our own when she is not being distracted by the three grandchildren and Karl, her husband. In order to give Alice a little break Chloe also kindly brought, with her, the supper for Sunday evening. Unfortunately, I felt a little sick, when it came to suppertime, and I just took one mouthful of each of the lasagne and the rhubarb crumble, both of which were delicious, but I just could not face them. I suspect it was because I had been busy all day and had not had a proper rest

One milestone was passed last evening as I was able to show Chloe a film of her choice on the television, through my laptop, this was our first attempt after Paul ‘the computer’ had cleverly set it up. The process worked like a charm with no cables to plug-in or pull out, the whole operation worked by pressing buttons on the TV remote control. I was delighted as this gives us another dimension, bearing in mind the early time I go to bed. Now I can simply do ‘catch up’ and, if she is interested, show it to’ my lovely’ who, presently, shows not the slightest interest in it, but I suspect I will win her over in due course.

Shortly before Chloe left, mid-afternoon, I was fiddling about with my computer when the mechanical arm rest flew apart. With Chloe’s help, holding the bits and pieces, I could see exactly what had happened, a grub screw had worked its way free until it no longer had any purchase. Without this mechanical arm supporting my left arm, with the splinted finger, I was helpless to do anything on my blog. Even accessing icons and double pressing the mouse was quite an effort and required me to hold my left arm up with my right arm so far as it was possible. Why do these things always happen on a long bank holiday weekend! Having worked out what was the problem, I then sent Chloe to hunt for a tiny Allen key, of which I know I have at least two sets. Could we find them, not on your life, although when I was mobile it wouldn’t have taken me more than two or 3 min. all very frustrating trying to remember exactly where I had last seen them. In the event we turned to our neighbour across the road, Luke, who, as always, was very willing to help and although he did not have the Allen key we needed, he managed to compromise using some other piece of equipment. In effect, he managed to tighten the affected grub screw sufficiently for me to use the mechanical arm until Gavin from Able 2, came, in answer to our cry for help, on Wednesday.

The other milestone we seem to have passed effortlessly was getting my stepfather, Richard (Marsh) to work his Skype, so we could both see and speak to each other. As I have said before, apart from the pleasure of speaking to my mother and Richard, this gives us an opportunity to see how they are managing, bearing my mother, at 95 is only two years older than Richard, who has a history of a dicky heart. We feel so isolated from them here and are always expectant for a phone call to say that something or other has happened to one or other of them. Pray God Richard out lives my mother, whose Alzheimer’s seems to be getting worse.

Click here for a little down-to-earth Welsh humour.

Anyway, the expensive elegant heel protectors, pretty well did their job. Certainly, reducing the amount of pain from the unbearable to the bearable. Sadly, prevented from keeping me awake through pain in my feet, the devil transferred his efforts to my mid-drift attacking both hips and buttocks. I have to accept that my whole body will now be affected by pain at night through the lack of mobility and must seek a balance between the quantity of painkillers, I take at night, and the effect on me during the following day. No doubt, after my letter to the four doctors, one or other of them will contact me after the bank holiday and we may well come up with a solution.

My Darling daughter Chloe, came down for lunch today and stayed overnight, I think she plans to return after lunch tomorrow. It always lovely to see her, particularly on her own, when she is not so distracted by the children. Although she is terribly keen to take over some of Alice’s caring, while she is with us, we have taken the opposite course, up to now, and made sure she gets an extra lie in on Sunday morning, which she certainly doesn’t managed to do when she’s at home with her three children and husband.

can line-a practice this article. Lives in the got some course and you will unfortunately so