27 September 2012
I suffered an attack of nausea whilst Craig, of Ross nursing, was preparing me for bed. (Not because of Craig, I hasten to add, I have the highest regard for this carer) I took the prescribed dose of anti-nausea pills and after a short while the nausea had passed. One of the problems associated with MND is the fact that I am rarely hungry and even when it comes to eating I want little more than a thick soup. This is because I have developed a fear of choking. How much of this is in my mind and how much is due to the to a weakening of the muscles in my throat, I know not one way or the other, the apprehension is there every time I come to face a meal. I have also developed the same fear of choking when it comes to drinking of fluid. This being so the whole process of meals has become a bit of a nightmare.
Colin, the Possum man, was an hour away from here when we discovered that the new control button for the chair, that he had installed yesterday, did not work. To be fair to him he did not complain about returning immediately, isolating and then fixing the problem.
The last few entries have been more depressing than uplifting. Just to redress the balance click here and look at these truly impressive photographs from the best of National Geographic Photos 2011.
Smiler came home last evening, on his way to an auction house this morning, to pick up one of his recent purchases. As always it’s lovely to see him and learn what is going on in his life.
26 September 2012
Colin, not Neil, turned up from Possum to adjust the new controls on the chair to be more patient friendly. He did a good job and then looked at the bed controls, which we call Trivids. One of them only worked intermittently and there can be nothing more frightening than hitting an alarm button and not knowing whether or not it was transmitting to the receiver. He adjusted the faulty ‘Trifid’ and I shall only know if it is working properly when I go to bed tonight.
He then turned his attention to the chair controls. These were a little more complicated so as they work only after pressing a large red button – Velcroed to the palm of my right hand. It works following a voice command – Up or Down. The beauty of this particular control is that I can use it when ‘my lovely’ is not in the room and I wish to adjust the height of the chair. In the past I was able to operate the chair through the hand held control unit. It was only when I found that my fingers are simply not strong enough to press the finger size buttons that I dreamt up this new idea that, thank goodness seems to work reasonably well.
I started off this entry by mentioning that there is nothing more frightening than pressing an alarm button and getting no response. Whilst touching on this subject of ‘frightening’ I should mention that I have lost my confidence in the carers in getting me from my bed into the commode/shower chair. Readers will recall that some weeks ago we were forced to switch from the standing hoist to the swinging cradle. On the whole we moved through the transition fairly smoothly. It is only in the past week or so that I have become frightened, not so much with the swinging cradle but more with getting me into it. I have developed a fear of falling, either sideways or of the bed altogether. I believe this has come about as I have lost control of my upper body that the carers, at least some of them, do not seem to understand why I have suddenly become extremely nervous when we approach this part of getting up. I had resolved the problem for the time being by introducing the respirator part way through. If I’m getting an adequate supply of air I seem to be able to relax and go through the procedure in a calm and relaxed manner.
I don’t think that anyone who has not become physically incapable of controlling his/her body can possibly imagine how a patient who has not shown any indication of nervousness, in the past, should suddenly find themselves having to deal with that patient and, in doing so, adapt their own physical approach to attempt to ensure that that patient was not being terrorised by the way he/she was being handled.
One way over this problem would be, so far as possible, to have the same carers, in whom the patient has confidence and not, as things are at present, having no knowledge of who will be coming to attend to until they actually arrive. I have been trying to get this message across to Ross nursing for over one month now and it is time for a showdown on this particular issue. In every other way and nothing to complain about. In fact, quite the opposite, I would have no hesitation in recommending this agency to others.
I may have a small problem with my carers but compare that with the problem facing the Prime Minister in trying to effect an acceptable changes in the various departments without rocking the boat too much with his Liberal coalition partners. One brave soul sat down and wrote to Mr Cameron with his own solution. Click here to read it.
25 September 2012
The crazy weather continues. As we approach the end of the month we are threatened with a full month’s rain one in one. Fortunately this extreme weather appears to be confined to and the Midlands but somehow we seem to have missed the summer somewhere along the line. These areas are suffering from horrendous floods once again. I heard of one family which has suffered from six floods this year and three is not unusual. Apart from the misery of clearing up each time I imagine that their insurance companies would only give them household insurance cover excluding anything remotely connected with flooding. In this case, what about do you do to protect yourself. Continue to live in a house prone to flooding or, if you decide to sell up and move to higher ground the value of your house will clearly be diminished. Thank heavens if you are not in this boat (so to speak) and spare a thought for those who are. It was only like yesterday that we were all looking forward to the Summer, counting the days down until the end of Spring. Certainly Autumn is upon us after literally a few warm summer days, the number of which can be counted on the fingers of one hand. I suspect, this will prove to be the true extent, of the British Summer this year. I must say very disappointing.
The laptop, or rather the voice activation programme, Dragon, continues to play up. I’m loathe to complain to the Dragon people as I cannot be sure how much of this is down to their programme and how much due to the deterioration in my voice, now a thin higher pitched whine where previously I had a the strong commanding voice. I say that today as, based on my own experience, the accuracy of the Dragon programme has never been higher, so the problem must live somewhere else.
The ever faithful Paul ‘the computer’ had to postpone his visit this afternoon to see what tweaking he could do to improve things. Maybe tomorrow.
For today’s spot of light amusement I include a joke which I have a sinking feeling I have already used before. If so, bad luck. It is well worth hearing a second time. Click here and see if you agree with me.
24 September 2012
Coincidentally as I was dictating today’s entry we received a telephone call from the Possum people responsible for my alarm button is – wrists; study chair and bed. We have been asking, for two or three weeks, for these people to come and sort at one during these alarms. The lady calling this morning was informing us and our regular engineer, Neil, but not be able to come to us, sometime towards the end of October. This is utterly unacceptable for someone in my condition who needs a 24/7 response as my alarm systems are literally a matter of life or death. I telephoned Possum and spoke to Sue explaining that the emergency service we needed, covering everyone of my alarms is not working in such that they are required then to get someone here, say the following day. I followed this up straight away with another call to Sue who promised to send my request to her boss, Alan Woodcock, so we can discuss how best to handle it.
Shortly after lunch today Jane ‘ the sheep’ came round with Paul’ the computer, as arranged by Alice, who was insistent that Jane should be properly instructed in the use of the nippy respirator before she could be left alone with me. In other words we were to enact some emergency procedures to see how well Jane could react when a real emergency occurred. Paul, instinctively picked up the calm, but speedy, response to an emergency and therefore we were confident that he could pass these on to Jane.
They spend a couple of hours practising with me as a dummy until we were fairly satisfied to have got Jane to a point where she could respond to an emergency, calmly and efficiently. As a result of me bullying Ross Nursing, I gather that a programme of training has been instigated to ensure that every carer who comes here, comes having been trained with this additional skill.
Click here to read one person’s view of the state of the nation which he expressed in a letter to our Prime Minister
23 September 2012
Paul ‘the computer’ came round at lunchtime and, as he is much faster than I am, at least having the use of his fingers, he very quickly started sending out my appeal letter to blocks of names in my address book. As so frequently happens, particularly on a weekend when one needs help, the Blog Diary was all over the place. I suspect that it have occurred on one of those occasions when the microphone was activated when the telephone rang, or somebody came into my office and unbeknownst to me picked up gobbledygook in relation to the entry I was trying to make.
To be fair to my readers, I must admit that this is one of the drawbacks of using voice activation, particularly when you use a very highly sensitive microphone. Even after you have told the microphone to ‘go to sleep’ it is listening, in the background, for any command to’ wake up’ or ‘comment on twitter’ or its favourite ‘send an e-mail to…’. If it thinks that you have given any of these commands and you are not following your dictation on the screen, as I rarely do, some lines later, when you actually look at the screen, you will find that the dictation is not in current blog entry at all but is being sent to some unsuspecting person as an e-mail. This may be corrected by reducing the sensitivity of the microphone. Anyway, that is what Paul was trying to sort out for me. He is very nimble on the keyboard and can effect results much more quickly than I can.
22 September 2012
This day ,three of Ross Nursing carers, completed the climb of Ben Nevis – the highest mountain in the British Isles- on behalf of the MND Association. Craig, who is my key worker at Ross nursing, seemed loathe to tell me about the climb. As a result he failed to send me any sponsorship forms in order for me to send them out to some friends in the hope of boosingt the money raised. Craig seems to have a crisis of conscience in not wishing to approach clients of Ross Nursing. Personally I believe that it is perfectly reasonable to let other Ross Nursing clients know about such activities and give them the opportunity to support the event by adding their name to the list of sponsors.
I have a list of around 200 colleagues or friends to whom I can quickly send the form, except that I had no form to send. Ultimately, by chasing Nigel, husband of Harriet of Ross Nursing, I received the sponsorship form. Unfortunately this did not arrive with me until after the intrepid trio-Sarah and Emma being the other two-had left to get an early start on the climb. I believe they set out at 4 a.m but, no doubt, I will get full details on their return.
I did not want to lose this great opportunity of raising some money for the MND Association, who have been exceptionally kind to me. So now having our, in my possession, the sponsorship form, I decided to ask Paul’ the computer’ to send out the appeal to around 200 of my contacts – colleagues and friends , which I set up for him. I have only once before made an appeal to this list of people so no one can say I pestered them and, no doubt, this appeal, although cutting it fine, should bring in £200/£300 or so.
Whilst all of this was going on my brother-in-law – – Col John Garton Jones – and wife Anne, arrived around 11.00 a.m for a short visit which cost him a modest contribution to start the list of
Once the Garton Jones’ had left and started the list of contributors!, and we had had our lunch I took my prescribed rest under the respirator.
Although I slept for an hour or so, I cannot say, with all honesty , when I awoke, that I felt refreshed with all my batteries charged, but time will tell if the Papworth advice to take this mandatory rest with the respirator really does the trick. S
Somehow the afternoon melted away without us making any more progress on the covering letters required for the sponsorship.
It is such a pity that Alice and I had not had the forms earlier as I’m sure we could have raised a few hundred pounds. However with the good Dr Michael matching hour contribution hundred pounds we have got a good start.
May I make this opportunity of appealing to my readers and, let us be fair, to whom only once before had I made such an appeal on behalf of the MND Association (The Great London Swim) and asked my readers to support that charitable appeal and this certainly will be the last I shall make although I cannot promise what my family will do on my demise.
Click here to get a copy of the sponsorship form and please add the words ‘on behalf of Prof Mark Cato’s Ben Nevis appeal ‘ in the x box. In anticipation of your support I send you my heartfelt thanks. I know we are inundated appeals for financial support for so many very worthy causes but very few from friends and colleagues who are actually involved in the active part of the appeal itself. Please give generously knowing that in doing so you will be assisting the research into this horrible disease
21 September 2012
I received a call back today from my Papworth hospital consultant, Dr Michael Davies. He seemed surprised that I had not attended my last appointment. There seems to have been some miscommunication over the need for such an appointment whereby if the hospita decided that the whole business of attending personally required a great effort on my part, though were quite prepared to do what they could over the telephone.
Michael Davies was as surprised as I was over this turn of events. As I explained to him, so far as I was concerned this was very time when I needed Papworth as is evidenced by this present telephone. C had noticed that over the past two or three days my that breathing had become very laboured. Although I could not say with any degree of certainty that this coincided with the increase in my lorazapam (my’ anxiety’ pill) I and thought it reasonable to discuss this with my consultant and thus the telephone, call.
, Michael’s attitude was what I expected. If I found the whole business of physically attending a clinic at Papworth, he was quite prepared to do what he could through a telephone consultation. After speaking Dr Michael Davies, we both agreed that I could certainly make the visit to Papworth hospital and Alice wondered whether they could fit morning on they third, fourth or fifth of October, when our own Dr Michael, from Australia, will be with us and good accompanying me to Papworth. Dr Davies promised to look at it and let us have a response on Monday.
I am quite pleased with the attitude of Papworth hospital who had somehow got hold the wrong end of the stick and left with the impression that I could, or would, no longer wish to make the journey to Papworth, for a face-to-face consultation. Michael Davies agreed with me that this was an important time for me to attend regular consultations with the hospital. The fact that there had been an alteration in my breathing, which I now believe was laboured, required some investigation at Papworth to eliminate such things as a chest infection, the possibility of which had been identified at last consultation, about four months ago.
20 September 2012
When the electrical fault manifested itself, a couple of days ago, the culprit turned out to be a small strip light over a built in dressing table. This, in turn affected the circuit from which the bathroom heater ran. I was pleased to learn last evening that this had been corrected and I could resume my showers, instead of the body wash I had had yesterday.
I learned, two or three weeks ago, that my keyword worker, and Ross Nursing, Craig and a colleague, Sarah, intended to climb Ben Nevis (the highest mountain in Scotland) in aid of the MND Association. Apparently Craig organised this climb in conjunction with the MND Association, with sponsorship forms, T-shirts and the like. As soon as I heard this I asked Craig to send me a copy of the sponsorship form which I would send to my friends and colleagues from whom I have only ever asked for sponsorship once in the last five years. Even as late as last evening I was still asking for a copy of these forms (from Sarah) as I was told this climb was to take place this forthcoming weekend. Although there will be nothing to stop me asking for sponsorship after the event, is not quite the same as asking for it before with the element of uncertainty that may will achieve it.
As I understand it the intrepid pair (or it might have been trio) set off at 4.00 a.m. for the drive to the starting place for the climb. It is unfortunate that they have chosen the very weekend when the overnight temperature, around Ben Nevis, is forecast to plummet to 4% centigrade, Not that our gang will be climbing at night but such a low night temperature will obviously affect the daytime temperature and they will have enough to contend with without having to put up with exceptionally cold weather.
The mountain is the highest in the British Isles. Standing at 1344 m above sea level, it is located at the western end of the Grampian Mountains in the Lochaber area of the Scottish Highlands close to the town of Fort William. It is a popular destination, contracting an estimated 100,000 ascents, a year, mainly charity sponsored.
Over the past couple of weeks I have found that my weak voice cannot be easily heard through the hands off, loudspeaker, telephone. This means that any important calls I have to make, or receive, Alice has to be with me to repeat my request for response. Fortunately I have found that moving the Buddy Gooseneck microphone closer to my mouth it is still possible to dictate to my blog entry with a 99% accuracy has before. This is the value of this extremely sensitive microphone as I can scarcely dictate at much over a whisper. This is good news from my point of view as my readers will know that I was concerned that my very quiet voice might have spelt the end of the daily blog, It still might but for the time being we have a reprieve.
19 September 2012
Thank goodness I woke up feeling fairly normal and it was just as well I did. Around 4.00 am I was woken by voices. When I called out ‘my lovely’ came and told me that we had a serious electrical fault. We are very fortunate in having an arrangement with Chris ‘ the electrician’ who is on call 24/7. He was here within 15 min of calling him. Fortunately just under 3 miles away.
My respirator although being able to run for a short period on its own that still means that any failure in the power source has to be taken seriously. There are several circuits in this house and it is no easy matter finding in which of these circuits the fault lies. A house which started its life in the 16th century and has had serious additions since, is not like a modern house where you can follow the electrical circuit round by lifting the floor boards. Anyway, on this occasion we were fortunate. It did not take Chris: to isolate the problem, fortunately to one of the bedrooms which we do no use on a regular basis. Having found the difficult bit of finding fault she quickly left us functioning as normal.
I continue to get two or three ‘new registrations’ for my blog, daily. I never understood what these so-called registrations were as we have not built into the site any formal registration. I asked Richard Morris and he told me that they came from people who had something to sell or service to be offered and there was nothing much I can do to stop them. Richard explained that with all these people ‘registering’, they do so in the hope that in searching for my site, the surfer come across the site of the very many people who had so-called registered themselves with it, and then accidentally come across my blog having noted that it receives 3500/4000 hits per day, it is worth then tagging themselves to it in the hope that some of the people genuinely logging on might be led to their site. No harm is done either to my site or the site of my genuine readers, it’s just one of those irritations that one has to put up with on the world wide web.
I survived the day in much better shape than I had the day before with all of the effects of sedation ostensibly gone. This reinforced the lesson I had had previously with the morphine tablets. It is too easy to pop a pill, when feeling anxious, but infinitely more difficult to extricate yourself from relying on these pills and, when coming off them, putting up with the side-effects, such as nausea.
18 September2012
The sedated feeling remained with me until I went to bed and as I could not make much sense I decided to keep today’s entry to a minimum.
One thing struck me as I was struggling to dictate something, and that was the loss of power in my voice. I have never considered this might be one of the reasons for not being able to write my blog until the end. I know that I commented on this a week or so ago, but only in passing. Yesterday showed me that this could well be a reason why the blog may have to cease before I do.
This was demonstrated to me most clearly when I’m trying to hold conversation with’ my lovely’. Unless she turned the television down and came quite close to me she simply could not hear what I’m trying to say.
In retrospect it is quite true that as the day wears on my voice grows weaker and this is particularly so if we have had anyone here, even for a short visit, where I had to maintain a conversation.
Many of the changes that I had made work,were in anticipation of completely losing the use of my one splinted finger on the keyboard , and, now I may have to rethink my daily input into the blog, ultimately without using my voice at all. My initial thoughts led me to think that this might not be possible, or at least possible within a reasonable timeframe but on further consideration there were methods of communicating to the computer without using my voice and obviously this excluded typing as, even if I had this particular skill, having now only one finger left, normal typing would have to be discounted.