My main preoccupation this morning, after I’d finished writing my blog, was centred on the continuing saga of the commode. (See 21st June entry). I know this is pretty basic stuff, but put yourself in my shoes and hopefully you will understand how it assumes such importance. One of my carers from Ross Nursing told me that one of his patients has a male commode which has a larger hole then the one I have, and is therefore specifically designed to accommodate the male anatomy. The same carer very kindly copied down all the information from this commode; who supplied it; what was the model number etc. Armed with this information, having been told quite clearly by my own OT that the only commode that the NHS provided was the one we have already, I had to decide to whom I would make my complaint in order to get a suitable commode in the near future. In the end I decided that the best person to sort this out for me was Harriet, the head of Ross Nursing. She is a no-nonsense person and will know who to go to to get this sorted out quickly. I made a call to the Ross Nursing office and Harriet was around here like a shot and then disappeared with the information, undertaking to sort it out
Quite apart from the drawbacks. I discussed in my earlier entry, each time this commode is used, the insertion and retraction of the bucket bashes my scrotum, which in itself is unpleasant, but I am fearful that it will cause some change in the pump of the artificial urinary sphincter which is located in the scrotum. If that went wrong, as a result of being constantly hit by this bucket, it would change our lives for the worst as I might then have to revert to catheters and leg bags. I will say no more about that at this stage, but having had nine months of this following my radical prostatectomy, I certainly do not want this added complication to our lives.
This evening was a repeat of yesterday evening after my day at the golf club. My eyes and nose started streaming late afternoon and I began to feel unwell. About the time I was due to have my supper. I felt nauseous and could not face it. That’s two days running where my calorie intake has probably be less than 1000; scarce enough to keep one alive. We may have to ask Doctor West if she could be good enough to call in and see if we can get to the bottom of this present problem. Fortunately , once I was in in bed. I’ve fell asleep very quickly, as I usually do, and when I woke up in the morning. I no longer felt sick.
I had a very nice telephone call from an Australian arbitrator asking my permission to use some of the material from my book Arbitration Practice and Procedure, Interlocutory and Hearing Problems in some lectures the was preparing. He was very laudatory about this book and how much he relied on it in his own arbitrations. All very good for the ego. It was good of him to ask permission to reproduce these examples. Most people, throughout the world, just copy and use them without seeking my consent. However, if they are recognised teaching bodies such as universities and colleges then they declare this to the ACI S which connects a few pounds each time this occurs and sends me a small cheque every year.
It is my intention to assign this money plus the royalties all of my books to some sort of educational fund for my grandchildren.
I had a visit today from a speech therapist, Tom, who was not the one dedicated to me through my MND assessment team at Addenbrookes, but somehow had been asked to call and check up on me. I pointed out to him how very important it was that I was able to continue to use my voice activation for my blog; e-mails etc we discussed all the different ways that one could communicate with the computer even down to word or letter recognition by means other than speech. I was aware that these existed, as most people know Professor Hawkins is only able to communicate by eye movement. There are a number of systems using a mouse grid where one could build up some text letter by letter but frankly that would drive me crazy. There is no doubt that my voice has grown a lot weaker and more gravelly lately but thank goodness Dragon still recognises 98% of it. It is that in combination with my splinted finger that enables me to continue to communicate when one or other of those packs up I suppose it will be the end of this blog. It was my intention, when I started this blog, that it would follow me to the end. I had not even considered the possibility of being unable to communicate that long, so this may become a new challenge I have to overcome. September will mark the fifth year when the symptoms of MND first appeared. Beyond that I go into the category of the very few who survived longer than five years. So be it we can only take one day at a time.
Tom also dealt with problems which occur when swallowing becomes difficult, the different forms of food preparation and so on until the patient ends up eating something like baby food. Thank heavens we are not at that stage yet. When we are, that will be yet another cross to bear.
After this incredibly boring entry I have reproduced a rather amusing piece of writing by that well-known comic actor, John Cleese. Click here and enjoy a few amusing moments.