Today, I received from one of our regular readers, who nursed her husband through MND, an excellent article written by an MND patient which describes some of the horrors of living with the disease, many of which would not immediately strike someone who has a friend or loved one who has had the misfortune of being struck down by this horrible disease. Click this link through to that article. It’s not too long and is well worthwhile reading.
Another reader has suggested that some carers may volunteer to be put into the same constraints on which their patient suffers. Complete constriction of limbs etc. See the Comment and my reply on today’s blog entry.
‘ My lovely’ missed our short quality time together this afternoon. Every morning she can be seen near the bird table at the back door, like Francis of Assisi dispensing food to all and sundry. The peacock strutting around with his chest puffed out as if he owned the place followed by anything up to 9 wives, then the birds graduated down from the larger to the small, doves and pigeons tits, sparrows our faithful robin and many more. Making quick dashes between the birds are our squirrels. There has also been the occasional muntjac, in fact it would not be incorrect to say that she has great compassion for all living things. This generosity of spirit also prompted her to put out milk and other food for the odd stray cat (and our hedgehogs).
One of our neighbours moved house, a few months ago, leaving behind two beautiful jet black cats, the smaller of which was very shy and reacted, when in contact with humans, as if it had had a bad experience with them. For some weeks after they left Alice faithfully continued to leave out food for them. Then a few weeks ago they disappeared or, at least, failed to turn up so we assumed they had found homes nearby and were comfortably settled. That was until yesterday when Alice looked out at the bird table and saw an emaciated small black cat with only a stump for a tail.
She thought that it was probably the smaller of our two black cats and decided to take it to the vet for a thorough going over. She caught it, without too much trouble, and then with the company of Jane’ the sheep’ took her to our local vet. Unfortunately it escaped from the cat carrier and dashed out into the vet’s garden. Alice pursued it and found it in deep under some brambles. Despite not being dressed for the task he spent an hour or so trying to entice it out with some milk but without success.
Determined not to give up she plans to return tomorrow suitably attired and kitted out to hack her way through this jungle of brambles and attempt to capture the cat, and hand it over to the vet when its convalescence can begin.
I have only gone into such detail about at an ordinary everyday domestic occurrence to remind the reader what a compassionate person my number one carer is. Donkeys are high on her list of charitable donations. Then come horses, dogs and other four-legged friends who have been abused or neglected to a point of abject misery.
I cannot recall whether I mentioned that my breathing has become very laboured and after a chat with my consultant at Papworth have agreed to go in for a checkup later this week. Dr Michael Davies has very kindly squeezed us in as my own good Dr Michael, from Australia, will be with us for a few days and will accompany me to Papworth.
Shortly after I had been bundled about and settled in my study chair ‘ my lovely’ appeared ready for a battle with the brambles, at the vet’s, to try to extricate the poor little black cat who had obviously been through the wars since she left us.
Jane’ the sheep was left in charge ready to greet the good Dr Michael from Australia who shortly appeared before Alice retureed. Sadly with no cat.
Today was our big day at Papworth Hospital as it turned out it was extremely fortunate that the good Dr Michael from Australia was able to be with me the whole day. Michael has written his own semi-medical description of how the day went and I’m reproducing that below in italics. Of course in reading Dr Michael’s version of how the day went we must remember he is a doctor whereas the patient sees it from an entirely different point of view. Certainly for me I would say it was one of the worst days of my life, as much as anything because I panicked over breathing at some stage and spray was used which seem to me to block both nostrils solid and it was the ramifications from this which turned this into a horrendous nightmare. I was certain I was going to die. I couldn’t breathe and this is the most frightening aspect of the whole thing. In a sentence I now know that my prognosis is poor and I could certainly pop off any day. In the meantime the quality of the life I have left will be certainly diminished.
Mark, yesterday, Wednesday, 3 October was a torrid day for us to share – but there were benefits.
First the bad bits. The ambulance taking you to Papworth Respiratory unit was an hour late. The reception area for ambulances and patients at Papworth (Bernard Barren Building, Entrance 3) is primitive, limited both for parking and then for variously disabled patient to have to congregate. Then in spite of all our efforts to arrange transport home this failed with us being advised that the ambulance arranged for about 1330 would not arrive until 1630. A hasty call to the reliable Ollie’s Wheelchair Friendly Transport brought relief although Ollie was slowed by heavy traffic. By the time you arrived home to Lantern Thatch it was after 1700.
TStop listening to you when you make if you’re going to want thank you doing the entrancehe ambulance wait which found you sitting in your wheel chair for an extra 3 hours caused pressure area pain on your bottom and you suffered with increasing cold. Thereafter you were anxious and required the mask but this too was made worse by a blocked left nostril. In spite of the Nippy respirator working well at higher pressures and your pulse oximeter giving oxygen saturation readings in the high 90’s you were stressed with a feeling of insufficient air and the blocked left nostril. Try as we might we could not get you comfortable and this led onto a difficult night watched over by the attentive and skilled night carer Djarn (?spelling, pronouncer Yarn). This morning though you were sleeping peacefully with an oxygen saturation sPO2 about 97%.Off the respirator while Craig and Paula were sitting you up, dressing you then moving you to the study your sPO2 dropped to about 87%.
The better aspect of the day were the Papworth staff, nurses and then Dr Michael Davis your respiratory physician. Kind, caring and clearly knowledgeable. Michael Davis was concerned by your loss of 6 pounds weight since your previous visit but more so because of the low blood oxygen (off the respirator and also recordings taken automatically at home overnight-on the respirator). Of even greater concern was your raised blood carbon dioxide (84 mmHg, normal is 35-45mmHg).
He identified this as insufficient breathing because of the absence of diaphragm and weakened chest muscles. Now you were relying, off the respirator, on using “accessory” muscles in your neck to breathe. Increasing the inspiratory pressure of the respirator, which he advised, has corrected all this.
Like me he thought your swallowing was still adequate but you were having difficulty because of a sensation of a shortness of breath each time you swallowed. By day he suggested using the nose attachment for the respirator and encouraged you could learn to swallow and even dictate with that mask in place. Dangerous choking is unlikely.
Oxygen is not indicated and sometimes with a high CO2, is contra indicated or must be used with care.
We discussed feeding directly into your stomach. This is an option that should be retained to supplement whatever you can get in and taste by mouth. To insert this PEG (per oesophageal endoscopic gastrostomy) normally requires sedation but for you with respiratory impairment, a general anaesthetic would be necessary and you would wake with respiratory support much like you are using now. There is no rush for this for it is important first to stabilise your breathing and improve your oxygenation and reduce the high carbon dioxide CO2, ( a waste gas – by breathing it away with the help of the respirator). This now seems to be working well though will take a day or so for you to settle.
Michael Davis indicated you could be admitted into Papworth anytime for stabilisation if you do not obtain this at home. He thought you would need to stay for up to 3 days and Alice could be with you. He is aware though of the incredibly good support you are getting at home. Better than any hospital!
At the end of this torrid day you enquired ” is it all worth it, or should I just pull the plug” but you quickly resolved to push on aiming for Christmas and then again your 50th wedding anniversary next March. Obviously, there is a more “living” yet, to be enjoyed !
Sure we have shared much, but Wednesday 3rd October 2012 was not one of our better days. Yet there were the good bits, and the benefits, and you and I have learnt to cling to these..
And so with half a dozen carers and the good Dr to calm me down, sufficient to put me to bed, I suspect this is the first night over the last many years we went to bed without our champagne. I really know that the good Dr not wishing to alarm the our two children has written a little for them and I will reproduce this tomorrow.
4 October 2012
And so the day after.
I had a good night’s sleep and we have slightly changed the routine. Instead of me being dragged to a sitting up position on the edge of the bed, at around 6.00 a.m., I now get an extra hour in bed. Over the last two mornings I have had a bed bath before being wheeled into my study where I have my breakfast and deal with the other matters, such as shaving.
I left the readers yesterday with a promise that I would reproduce for them today the note that the good Dr Michael left for them concerning the nightmare visit to Papworth. Michael is extremely considerate and deals with all of my team, be it a humble carer or senior consultant. It was his idea to add a note to Miles and Chloe as he realised they might be getting a little worried. So here is the note.
Miles and Choe,
Just to bring you up to date with our activities yesterday at Papworth. A difficult though useful day.He is going to need the respirator more frequently by day. Also the time is approaching whereby someone other than Alice can be constantly about, to begin with in the morning and then perhaps the afternoon as well. I have been caring for him today and he kept me constantly on the go. The respirator and nose mask works well by day when required and the full face mask at night.
Michael will continue to keep in touch with Dr Michael Davies at Papworth whom I am. I assured find his intervention extremely helpful.
His outlook of course is poor but it is difficult to be precise. Certainly he is more frail than a few weeks back. He understands all this and his present aim is Christmas and then after that the March wedding anniversary.
This is the note I sent him thinking it might save him from doing the blog for that day. I will talk to Dr Michael Davis about progress (and there has been some progress in that I am sure his blood gases will be much improved) before I leave London for Melbourne 1030PM tomorrow, Friday night.
Back about Christmas but if Alice desperate I could find a week before then to come and continue my present role.
Love to you both,
So you can see how very fortunate I have been that Michael was here and able to take an active role, both at Papworth and with the subsequent problems and home. I suppose that’s what almost 60 years of friendship is all about. The good Dr Michael heads to Australia tomorrow with a promise of another visit if it is necessary as can be arranged to suit his busy schedule.
I woke up this morning feeling fine. I had absorbed the additional hours sleep with no trouble at all. Alice popped in and around 5.00 a.m. to tell me that she had now taken over and having sorted out my various limbs, left me to my own devices, with the lifeline alarm system operating with the “Trifaids”.
With this new regime Dr Michael Davies was anxious that I should take at least two hours in the morning and the same in the afternoon on the respirator. I had certainly noticed yesterday a strengthening of my voice and less laboured breathing when the respirator was removed.
The good Dr Michael leaves today, en route for Melbourne with the offer of a quick visit before Christmas, if necessary. I now have to learn to pace myself and little better than before and make use of the nippy to stabilise my breathing. As to the prospect of an early demise due to respiratory failure, the good Dr Michael said,’ we are all die and I may go before you’. Unlikely, but true!
I must learn to take things a little easier as my blood pressure has been exceedingly high. Apart from that I can only promise to be a ‘good boy’ and see if I can hang onto life a little longer particularly aiming for my targets of Christmas and then our golden Wedding stop you would
With the good Dr Michael sitting with me and my daily visits from my key worker from Ross nursing – Craig and colleagues – we got through the day relatively without incidents. ‘my lovely’ was out (cat hunting’) , and Ross Nursing was suffering with a chronic form of staff’s short bursts as they are not allowed to visit patients if they themselves are feeling off colour or have a cold,
I find that if I do not try to speak to often then I should be able to keep the mask working, if not then we all know now what the consequences are likely to be. In the meantime as I sit concocting my blog, the good Dr Michael wings his way to Australia via Singapore. Will I ever see him again. In his characteristic generosity he has offered to pop back, probably in late November, a typically generous gesture from an old friend I am sure that the local GPs and even the hospital consultants, find Michael’s short notes of my daily condition, extremely useful.
One of my greatest fears, ignoring the possibility that I would not be able to speak sufficiently clearly that I would be able to continue this blog to the end. First of all I can say that I am able to dictate, with my Dragon programme,. We are still waiting to try and see if it is possible to dictate with just the nose respirator. I believe this is something I will have to try to get to grips with, I will keep my readers aware. The good Dr Michael has informed me that I hang onto life tenuously. Any of us could go at any time, the attitude from my point of view is to take things quietly. Apart from anything else, the very short spaces of high blood pressure, do not help the cause. It means a little more physical movement where I am able the new routine will take some getting to know but I am sure that once my team at got the hang of it it will go as smoothly as before. I can see that I will have to conserve what little energy I have and distribute that between dictating to the blog; speaking to my friends and dealing with 20-30 daily emails
Today was the first of the new regime which ‘my lovely’ and I had worked out, resulting in something like an extra hour in bed for me. When this had been discussed previously I had rejected it on the grounds that if I woke at roughly the same time as earlier I could find myself with an agonising hours pain to work through whereas now I am got out of bed virtually as I wake.
At 7.30 my carers appeared and eased me up to a sitting position at the side of the bed. Previously this manoeuvre would have been carried out at 6.30 by ‘my lovely’. We would then go through a ritual of bending and stretching, each of my legs then the same with my arms. We would then have our morning tea before eating lavishly on one biscuit of Weetabix and a little milk. This delicious meal was enhanced with a small glass of orange juice to which would have been added a tablet of Berroca with a vitamin and mineral which according to the box in which the tablets were sold did almost everything including the morning washing up! While the delicious flavours of the cardboard like Weetabix lingered on my lips I would enjoy a small cup of black coffee. At this point’ my lovely’ would start getting ready for the attack on my face with the latest of electric razors. This magnificent piece of engineering (sadly must be German with a name like Braun) designed to give what we all crave, ‘a close shave’ but in the hands of an amateur cannot be said to achieve this. Following this generally unacceptable scrape over my face (bless her, she really does her best), I think there are another half a dozen or so tablets I have to take before one of the two carers will come and spray some varnish or other on my few remaining strands of hair, thus eliminating my previous identity as a mad professor. The final act of the past regime would have been for ‘my lovely’ to have read a few more pages of one of my son’s books about the family. I have at least learned something as astute readers will have noted me boastfully saying how my son has traced his mother’s family back for 1000 years, it now turns out that I was wrong – it is more like 1260! This is a charming start to the day to really listen to Smiler’s work whereas previously, in the bustle of my busy life I probably skim read them and did not do justice to the sensitive use of the English language employed by the author.
All of this would be carried out before any carer appeared. Now is the beginning of the new regime where I would have an extra hour in bed and the other washing, shaving, hair etc would all be carried out by the carers. When we had chosen to have the carers in at 7.30 it was on the assumption that I would be bored stiff at this late hour and be happy to get up. This is not as it has turned out as, as long as the painkillers continue to do their job I have enjoyed the extra hour in bed. It is early days yet but after two days of the new regime I seem to have benefited from that additional hour. I certainly felt fresher this morning than I have done for some considerable time. Let us pray that this continues.
The good Dr Michael packed his bag and took his leave late afternoon. It really was a mercy mission this time and he has very generously said he would try to fit us in for a visit before Christmas. I have also awoken to the sense in trying to follow the jug half full principle, thus preserving what little energy I am given to playing with each day. (See blank entry).
As my voice has become little more than a whisper and which deteriorates more as the day goes on, I have great apprehension about being able to maintain this blog. To get up each day with no task ahead of me, I should find devastating. I have always set out each day with a purpose. My great grandfather, Frederick Dutton was a perfect mentor. You can understand therefore how delighted I was to find that my buddy gooseneck microphone is as good as the package it comes in on which it says it can take my thin wispy speech and turn it into reasonably good written word. Let us hope that this continues.
As I sit here writing this entry, the good Dr Michael is already an home in Melbourne shooting out emails to all concerned. I must say that both Alice and I realise I’m very fortunate we are to have such a distinguished surgeon and physician, I’m sure that the people we have seen at Papworth, on this occasion, and at Addenbrookes previously, very much appreciate his input, particularly as he is able to take measurements and report on the basis of 24 hour differences. Anyway we appreciate having an opinion from someone so well qualified as Michael. He has offered to come in November but from our point of view we do not see the need for any great urgency and would hope that he was able to fit it in for one or more legal-medico report which will make his visit the more useful.
The reader will understand why ‘my lovely’ insisted that we had a quiet day at home with which I was happy agree. Although we will receive a proper report from Dr Michael Davies, in the meantime I can report on two issues which cause me some concern. The first was my high blood pressure. I cannot recall them all but one 204/101 seemed alarmingly high for me used to boast, right up to the time I was still attending the generation, of having the blood pressure of a young man 170/30.
No doubt Dr Michael Davies will prescribe something for this, which will mean more pills!. The second was ‘that I was only hanging on to life by a thread ‘which in any event means I could snuff it at any time. Another issue beyond the two I have mentioned concerned my weight Richard gone down by 8 ½ kg since the last visit. For this I believe I can be prescribed calorie pills. With most of my friends trying to lose weight it seems ironic that I had to go the opposite way.
This will require a visit from Dr West to decide on the best calorie pills plus something to counteract the high blood pressure.
Darling Chloe who arrived around teatime yesterday, left just before lunch today. Apart from the pleasure it gives me to see her, she was also very helpful helping me tidy up a couple of the blog entries which seemed to take more time than dictating them in the first place. I asked how much they had mentioned my condition to the children. It seems that they are not making a big deal of it at have told them sufficient for them to know that I am extremely ill and for them to expect the worst, although when that will be only the good Lord knows. At least, Miles and Chloe are prepared for the worst.
One of my faithful readers, Penny, has sent in an excellent article by an MND sufferer, Tony Judt, entitled Night. The article is not too long and is well worthwhile spending a few minutes on and contemplating how similar your own symptoms are to that of the author and how to overcome them. Tony’s symptoms are those of a quadriplegic and from that aspect I can claim to be similar. Click here and spend a few minutes comparing symptoms with Tony Judt, and thanks to penny for sending it to us.
Another reasonable night taking on board the additional hour in bed. The next phase turned out to be slightly dramatic.’ My lovely’ having got me on the edge of the bed, with the two Ross nursing carers watching, then handed me over to them but in a slightly precarious position. I was taking all the weight on my left elbow instead of being equally balanced and all this time being frightened of falling over on my side which, once I had done, would be highly dramatic with one of the girls trying to put on my face mask and other one trying to get me to sit up. In the end we decided the safest thing would be to get me into the sling and, once there, transport m via the sling hoist onto the commode. From there on the programme would pick up as before with me ending up in the study completely dressed and ready for breakfast. After which I would need a shave and a toothbrush. We did not manage this entirely without incident and the time ran out.
Alice then shaved to me (after a fashion!) Leaving only the teeth to be cleaned at lunchtime. I’m sure we will get it right in the end but I believe with the new procedures we will need to ask for a little more time.
‘ My lovely’ has been loath to request more time under the ‘continuing care programme’, in case some bureaucrat decided that the 2 ½ hours we are currently granted is too much. I really cannot believe this to be the case myself as it covers four visits from getting me from bed, breakfast, shave, teeth etc and then the reverse in putting me to bed. In addition the other two visits were little more than short lavatory breaks. It would be wonderful if one was able to programme one’s body to ‘wanting to go’ but nature cannot be so precisely organised. What happens presently is that unless I can ‘go’, almost to a precise minute, then I’m going to have to wait 3-5 hours for the next visit from my carers. So, in the end a lot of it comes down to lavatory. There is the alternative of wearing a nappy but this goes against the grain for a 78-year-old.
There are already emails flying back and forth between Alice and the good Dr concerning a visit in November. Maybe they know something I do not or perhaps they are just more optimistic! To be honest I felt better yesterday than I have for weeks. I even felt my taste buds rising at the thought of Kimberly’s wonderful curry borne to us by Chloe. This is a good sign as, for some time now, I really did not care whether I ate or not.
Another beautiful crisp, sunny autumn day. The sort of day I would relish, in the past, when I was playing golf. I must admit sitting in my lounge chair and looking out on to the garden, I do feel envious of my friends meeting up for the Tuesday geriatric golf. Whilst I would like to think I could go on getting Ollie to take me mid-morning so that I could drive around on these days, before sitting outside the clubhouse, preferably in sunshine, before going in for lunch. The last one knocked me out so much that I suspect I shall have to adhere to the medical advice (reinforced by’ my lovely’) and give up this pleasurable pursuit.
This reminds me of two extremely difficult letters I must write shortly covering resignation from two clubs which have given me an enormous amount of pleasure over the past 40 years or so. Firstly my membership of the Royal Newmarket and Mildenhall, Golf Club. This club has been dubbed the’ Sacred Nine’, and that is indeed an apt description; such camaraderie and special friendships are formed through being privileged to be invited to join these clubs. The second resignation will have to be that of Lord’s ( bearing in mind that it now takes something like 19 years on the waiting list to get in) it is not a decision taken lightly.
By resigning I shall not be tempted on another excursion. In any event if I did feel strong enough on some future occasion hopefully a number of my friends would be happy enough to take me has their guest.
There was a further issue arising from the recent assessment at Papworth Hospital, about which I feel I should be better informed. In acknowledging that my whole breathing pattern has deteriorated and up to now I had not required daytime intervention, Dr Davies is of the opinion that that state of affairs has now changed. What he suggested was that I should give myself a couple of hours in the morning and again in the afternoon, on the respirator. Pacing myself that way I would make better use of the energy I have at my disposal daily. It is the old jug half full or half empty syndrome.
Assuming one is given daily a half jug ‘of’ energy’, you could spoon it out measuring its use so that you maximise the benefit until it was time to go to bed. Alternatively, you could use larger spoons and ’emptying your jug’ at a greater speed leaving yourself a good part of the day lacking in energy. This measured use of the energy one has at one’s disposal is likely to lengthen one’s life, marginally but beggars the question whether or not a a few more months, perhaps in a vegetative state is to be preferred to a slightly shorter lifespan but one which is to all intents and purposes, free from too many side effects and hopefully little pain.
In order to consider the alternative uses of energy at my disposal or energy which could be enhanced artificially, it would be necessary to have accurate readings over a typical periods of time. Accordingly, I have agreed to blood temperature readings being taken at regular intervals, over say four days (using a blood pressure machine lent to us from Dr West). Only when the result of these tests have been considered by the Dr can we make any rational decision but at least by carrying out the tests we should be in a far better position to make a sensible decision on the best way forward.
Son Smiler came home for the night to do his regular check up on my condition. I suppose one of the plus factors of my having MND is that I see more of my children.
Another advantage about being able is that there are always a number of people coming forward wanting to give you advice. Click here to read what one brave soul wrote to our Prime Minister propounding his own solution to our economic troubles.
Smiler left mid-morning after giving me a shave (a first for him) but an operation we still have to work into our daily routine. He confided in me, from the sanctity of the barber’s chair, that he had been advised not to go on holiday in April as my condition was worsening and his informant feared for the worst. Well, here we are seven months later and still going strong. It just goes to show that even the most well-informed only have a vague idea about the progress of the disease
Craig and Paul P turned up to get me out of bed, dress me etc. They make a fine team finishing the whole process within the hour. Craig told me that they had a special meeting in Ross nursing offices yesterday where it was agreed that he and Paula P would be our primary carers backed up by Carla. In other words wherever possible a combination of these three carers will be selected to deal with the for visits from Ross nursing.
This suits us to a tea. Apparently, Harriet has also undertaken to approach social services with a view to getting a little more time. I told Craig that Dr West was also on the case and that she should liaise with Harriet as we do not want to find ourselves on the wrong end of a decision as a result of putting pressure on the social services.
In the post this morning came two sets of DVDs, one covering the whole of John Galsworthy’s Forsyth Saga and the other CS Forester’s Hornblower. These came as a belated birthday present from Chloe and family and work in lieu of book tokens which somehow I never managed to use. Anyway a lovely gift from which I will get a great deal of pleasure.
I chased my publishers this morning concerning the process of updating the third edition of my book Cato on Arbitration-Interlocutory and Hearing Problems. The update is now running almost 2 years out of time. This is due to the heavy workload that my friend, Dr Julian Critchlow, is dealing with. Whenever I approach on the subject he assures me that he will be taking some time off to deal with it and has planned how he will complete his part of the task but, in the event, with the best will in the world, he always seems to fail. I had made it clear that it would give me a great deal of pleasure to see this Fourth Edition published, before I go but even this tug at his heartstrings had not been converted into action. I shall have to try again.
Even if you are not a keen golfer you cannot but admire the the skill of this magician. Click here to see if you agree with me.