18 December 2009
We had a heavy snowfall overnight but woke to the most beautiful day – bright blue sky. The garden an our thatched cottage looks very pretty, a scene straight off a sentimental Christmas card, also reminiscent of my younger days on the ski slopes.
Jodie from AbilityNet was due today to give me a couple of hours training on the new computer. However, not surprisingly he arrived late  due to the inclement weather — indeed I was amazed that he arrived at all – he then informed me that he had another appointment in Chelmsford. There was no way he was going to get there and back there in time to give me a couple of hours training, so I sent him on his way in the hope that he got there and home safely and rescheduled my own training for early January.
I have received a very nice reply from Mel Barry, the communications officer for the MND Association, in connection with my comment, in this blog, concerning the TV documentary Into that Good Night. (See 10 Dec. entry)
I had sent a copy to her in advance of publication to ensure that they did not consider I was being offensive, or perhaps overcritical, of the Association. Mel told me that the MND Association  had had no input into the documentary and, in any event, did not find any of my comments offensive. As she pointed out, all MND sufferers are different and approach the disability in their own way.
I have also been in touch with the chief executive of the MND Association, Dr. Kirstine Knox, over a number of issues. Having acknowledged the kindness and generosity I have received from the Association, via AbilityNet, I did point out that I had been forced onto my own resources to ’invent’ various gadgets or devices to assist me in my daily living and suggested that an important area in which I believe the system is currently failing MND sufferers and their carers, is the the dissemination of useful practical advice on daily living. Although the MND team at Addenbrooke’s Hospital have pointed me to various publications and independent living centres, as well as referring me to AbilityNet, they have not come up with practical suggestions as to how to overcome personal problems with which one has to deal with daily. I have to rely on the local occupational therapist, who although extremely pleasant and caring, proved quite useless when it came to overcoming personal problems due to the diminishing ability to use of my hands. My suggestion is that the MND team should include a specialist occupational therapist depending upon which form of MND the patient has. It would be her, or his function, from day one to come up with practical suggestions on daily living.
I received a charming lengthy reply to my letter. On the point I made about the dissemination of useful practical advice, Dr Knox pointed out that the multidisciplinary team should include an occupational therapist (OT) who should be able to assess an individual’s needs and support them and find practical solutions to the problem. As no two people with MND are the same or have an exact same problems this should be done on a one-to-one basis. If an OT cannot find a solution they should be offering referral to Specialist Centre’s around the country that will have a  wider knowledge of equipment and adaptations of daily living. In my reply I said I am fortunate in having been referred to a multidiscipline team at Addenbrooke’s Hospital in Cambridge although the OT only appeared once and does not play an active role in my quarterly assessments I certainly take your point about no two people with MND having the same requirements but, for example, people with weakening hands and arms will broadly speaking meet the same problems, sooner or later. Although I certainly accept Dr Knox’s point that they considered employing a specialist team of OT’s but was something that is not currently viable, I still feel that the Association could at least be responsible for putting together a basic leaflet listing all the sources of information, websites, specialist centres etc as well as including a list of simple practical suggestions, covering perhaps the three broad categories, legs, hands and arms and throat. Then, depending upon which the areas of the body was affected the patient could adopt the practical suggestion or contact the Specialist Centre for advice, as and when necessary.
New Year’s Eve 2009
Michael left early this morning to spend the New Year’s Eve celebration with his family in Sweden. A brief but happy visit.
A visit to Addenbrooke’s Hospital this morning for a fitting for lycra gloves. It seems that they have no experience in trying out these ‘second skin’ gloves for MND patients. It will certainly be interesting, both for the hospital and for me, to see if they do any good. I go for a fitting on 21 January.
I received a report from Papworth Hospital today following my visit on 7 December.
Basically all seems well and there is no evidence that there is any bulbar (throat) involvement in this stage. There was a slight concern over my overnight oxygen saturation, measured on the Oxyimeter, Â which they will check again on 29 March when they say that they should then be more certain of my trajectory.
Today, was a red letter day for my blog when it passed the 150,000 hits mark, this despite, being still horribly out of date with the last entry, in effect, being 28 November but, as I said earlier, all the information is with Richard, Â so hopefully it will be updated very soon.
Alice and I are very boring about New Year’s Eve. Unless we are invited to a party we tend to treat it like most other evening, perhaps spoiling me with a glass of champagne, otherwise reasonably early to bed as usual.
14 January 2010
My quarterly MND assessment at Addenbrookes Hospital today. Really there was very little to discuss other than the obvious deterioration of hands, arms and particularly legs. As usual I pressed Dr Alan to predict the rate of deterioration. Unwillingly he agreed that I would almost certainly eventually lose the use of my hands followed by my legs but could not predict when – although he thought possibly within a few months. In fact, I’m doing better than he predicted last March where he suggested I might lose the use my hands by the end of the year i.e 2009, but then, as he says, he always opts for the shorter timescale. This way anything longer is a bonus. He thought we would have a better idea at the next assessment in April. By then I will have paid another visit to Papworth hospital, so the respiratory side of things will also be clearer.
Seeing the deterioration in my legs and the difficulty I had rising from the chair, the doctor kindly agreed to write and start the ball rolling about the possibility of a chairlift. These things can tend to take some months to sort out so it’s not too early to plan ahead.
27 January 2010
I had my lycra gloves fitted at Addenbrookes Hospital today. My initial impression is that whilst giving a certain amount of support to the wrist, at least, the downside is that they restricts what little grasp I have left. In other words,  it is more difficult for me to curl my fingers towards the palm. However, what the gloves do is to straighten out the fingers and I will probably sleep in them for a week or two rather than trying to wear them during the day. I believe it is a well-known medical fact that the more fingers are curled the less likely it is that one can straighten them. So it seems logical to me that if I can stretch them, say over night, in a virtually horizontal position, that could give them a slightly longer useful life, although no one seems to know whether that will actually be the case.
This week has seen two landmark cases in the ‘assisted suicide’ debate. Kay Gilderdale, who was by all accounts, a devoted mother, assisted her daughter to end her life with tablets and morphine. This, after the sick daughter had attempted suicide and failed. This loving parent could not bear to see her daughter suffer any longer and she walked free from the court with a suspended sentence after being charged with, not just attempted assisted suicide but also  attempted murder.
Compare this with the case of the woman who injected her brain-damaged son with a lethal dose of heroine as she could not bear to think of her son suffering any longer, this despite some encouraging medical prognosis. This devoted mother was sentenced to a minimum of nine years in prison for murder.
These cases have opened up the whole issue of the ‘right to die’ and ‘assisted suicide’.
The reason for the seemingly harsh sentence, handed down by the court for the mother of the brain-damaged son, was that he was not in a position to indicate that he had an intention to die. These cases together with the more recent cases in the High Court on assisted suicide make it even more imperative for the government to consider a change in the law.
8 April 2010
My quarterly assessment at Addenbrooke’s Hospital today with Dr Chris Allen and Shelagh Smith. They noted the comments from Papworth Hospital but in summary considered I was doing quite well. When pressed, which Chris is never very keen about, he speculated that my arms might well continue as they for some months and that I should certainly not give up the idea of going to China in October. The legs may be weaker but I should still be able to walk after a fashion. No guarantees!!
12 May 2010
I am still here (in hospital) desperately waiting to get home. Our local OT, Sarah Moss, has been an absolute star and has already had an NHS bed, hoist and ramps delivered at home. The only thing keeping me here now is recruiting staff to come in morning and evening to hoist me out of bed and into a wheelchair and then to return in the evening to put me back in bed.
The days drag but I’m fortunate in that a second year Foundation Doctor, Gemma – I never learned her family name -, took pity on me when she realised I could not get broadband in this ward and very kindly lent her dongle, which allows me to use the Internet. She saved my life so I gave up my box of truffles.
13 May 2010
Another red letter day my darling daughter Chloe’s birthday. She also broke the good news was that she had been made a consultant clinical psychologist at the Maudsley Hospital, where she works. It is a great feather in her cap as it is one of the leading hospitals in the world in her particular discipline. Both children (why do we persist in calling our middle aged offspring ‘ children’?) have kindly telephoned me daily and both and entreated me to not put too much pressure on ‘my lovely’ about coming home. They quite rightly say that we must be properly prepared, so it looks as though I may be here a few days longer.
Of course, the highlight of every day is the visit (or perhaps two) from my lovely who brings me goodies in the way of fruit, nuts and chocolate. On my request, she also brought me a little plain bottle containing whisky but one of the staff nurses noticed this and said rather sharply, that alcohol was not prescribed, so having be on the waggon for a week now I shall continue for a few days more, no doubt doing my system later a great deal of good. Funny thing is I don’t really miss it, nor indeed my evening cigar. It is nice to know, as I thought I might have become addicted to both but clearly they have become merely a matter of habit.
14 May 2010
Great excitement today. When the doctor was doing his rounds, I suggested that they could perhaps consider some sort of caliper that supported my knee taking the weight off  the lower leg. The doctor said he would speak to the orthopaedics about it and, as a result, I was visited late this afternoon by the head of the physiotherapy department, and nice young man called Edward and his pretty female assistant Lydia,  tested my strength on a walking frame called ‘a pulpit’.. It is like an ordinary walking frame with front wheels, except I can lean on it with my lower arms,  taking some of the weight from my legs. Considering the weakness in my arms, and in both legs, I was surprised at how well I managed to walk a few steps without incurring too much pain. They have left me with my own pulpit walking frame for the weekend to allow me to transfer from chair to bed on my own, and from bed to commode etc   without having to use the wretched hoist. I was so thrilled at being able to stand –  I just couldn’t believe it. The whole of my future prospects have changed yet once again.
I put it to the doctors that I have a limited walking life left and therefore even if the fracture does not heal perfectly and I am left with a limp and even a little pain,  both would be a small price to pay for extending my walking life by a few weeks. They understood my concern and against the normal medical  process for getting me back on my feet, agreed to the use of the pulpit frame although, from time being, I can not still only put  the lightest weight on the cast, but for heaven’s sake, it’s only a week or so since I broke it, so can’t possibly complain.
15 May 2010
Another great day as far as mobility is concerned, no hoist just the pulpit frame.
What is a typical day here like for me for me here in hospital? I usually start my day at around for a listening to the World Service on the BBC, until radio four takes over at 5:30 a.m. Breakfast arrives at around 8.am in between I usually manage to do my daily bed exercises and then, leave my bed, using the pulpit frame and a little help from the nurses, into the bedside chair for breakfast.
After breakfast, which comprises cornflakes, orange juice and a piece of toast, if I am fortunate enough to grab a couple of nurses who take me into the shower to sit on the loo and then have a thoroughly good shower, sitting on the fixed shower seat, before returning me to my bedside chair to work through the morning on my laptop.
Another night mare night. I am certainly not going to be explicit as it might embarrass one or other of the patients or their    families. I only mention the fact that at night those poor souls who are confused are at their worst. In summary, not knowing where they are at all or wondering who all these people sleeping in’their’ house’; or why has our house changed without their permission; or you can wake up two o’clock in the morning and find one of these patients sitting in your chair adjacent to the bed -though partially clothed or totally naked -which is what happened to me last night and can be a little alarming. Of course, they know what they do and therefore one must be extremely sympathetic and here the nursing staff show how brilliant they are, coaxing the patient back to bed, in a caring and considerate manner, even under the most trying circumstances. I am immensely impressed.
Cracks are already getting to appear in the Lib Con coalition the promised increase in inheritance tax allowance has been postponed; it looks as though VAT may well go up to 20%; and capital gains anything up to 50% more tax relief for the poorest families to be offset against tax for the next level -all matter is designed to hit the middle classes so this seems more like a Labour government that the Conservatives.
16 May 2010
Oh, joy of joys. I was placed on the loo before my shower -the second in consecutive days – again with my leg wrapped in a rubbish bag.      Who would have thought one could get so excited over such every day events that we all normally take for granted?
‘My lovely’ turned up just before lunch and bravely offered to purchase an NHS lunch from the trolley but this was refused, apparently it would overcomplicate  the paperwork! She went off and returned early afternoon with some more goodies grapes, raspberries etc
Yesterday I sent an e-mail to the hospital CEO with, what I considered to be, some sensible comments. For example: name badges for staff to be worn on their breast so that we can identify them easily and address them by their proper name instead of just calling ‘nurse’. I also questioned the sophisticated telephone and television system provided over each bed which is very nice but very expensive. I am the only one in this 6 bed ward using it, although, at least,  two of the others could certainly afford it. I realise that this was probably part of a PDF contract (privately funded scheme for which the developer is paid an annual fee) (and therefore not within the control of the NHS. Despite this but I pointed out, what is, no  doubt, already  well known to any chief executive of the hospital, the importance of some form of entertainment for recovering patients and one for which they should not have to pay £5 a day per day or 49P a minute telephone call. I also mentioned the lack of broadband facilities, which in this day and age, is essential to those of us who are active are confined to bed.
I should have also pointed out that the bathroom, which, apparently has only been fairly recently been completed, should have included an elevated WC, on a pedestal,  . such as we have recently had installed at home and an adjustable height shower seat (the one they have yet is fixed too low). This bathroom was clearly designed by someone who was not fully cognisant with the  requirements of elderly or sick patients. Even healthy elderly people have difficulty in raising themselves from low seats.
Now to the most important event of the day. England became world champions by beating Australia in the 20/20 World Series Cricket, in Barbados, by a convincing seven wickets. Amazingly, this in England’s first world cricket title ever and augers well for the forthcoming Ashes series.
Mark Cato
