On Friday I went to London and had lunch with two old friends in a rather smart London restaurant. I met them at their office and before we left to go to lunch I asked the senior partner to accompany me to the disabled lavatory to give me a hand. I managed to undo my trousers and gain access in order to have a pee and cover myself up afterwards to a reasonable degree, by using the loops I had had sewn onto my underpants, but after that I needed help in adjusting my dress — my hands are simply too weak to pull up and adjust my trousers. The senior partner was very jolly about the whole process and there was no loss of dignity involved.
When we got to the restaurant my hosts donned on my apron,Â fitted with my two wrist supports -one fitted in with a shoover, another little gadget I designed and had made – the sort a baby uses to push food onto its spoon – and a newÂ â€˜inventionâ€™ of mine,Â a wipeable cloth sleeve for Â my left arm. I thought up this one because I’m having difficulty raising my right hand to my mouth with a spoonful of food. However, if I assist the arm by pushing it up with my left one, I can feed myself- thus the need for the sleeve, to protect my clothing, againstÂ any food which spills off the spoon.
Having had this new sleeve idea that got wondering — why did I have to think of it and why couldn’t I have been told by somebody else. I am not the first person to have weak hands or arms from MND and there must be thousands of others who have experienced the same difficulty and have come up with solutions. Where are these recorded?Â Why for example was I not given a leaflet with lists of practical suggestions on which other sufferers and carers have come up with. They may well exist and if so why have I not told?
I look on the MND Association website and find a HintsÂ &Â Tips section which refers to a number of Â support organisations. Yes, you can be directed towards branch groups and volunteer bodies to assistÂ you but, at the end of the day, it is the MND sufferer, or the carer, who has to come up with a question and seek the answer, or reinvent the wheel. My GP is always happy to refer me to an organisation, or consultant, provided I initiate the enquiry but she does not have any knowledge at all about MND, nor indeed it seems does anyone else in the practice.
I note, from the Association’s web page, that there is somebody called a Regional Care Advisor (RCA). Personally I’m not aware of such a person unless it is the lady who runs my MND assessment unit at the hospital. I would have hoped that this RCA was the person who gets an MND patient seen quickly by one of the many other services available to assist. The problem is when it comes down to it an MND sufferer has no greater right to a speedy referral than any other patient, despite the fact that his/her lifespan might be extremely short, and such referrals have to be made through the GP. An appointment with a physiotherapist, might take six weeks. Presently, I am trying to get a consultation with the Orthotics Department at my local hospital but am told Â there is a 35 week waiting list. Once I have had a consultation, and perhaps persuaded them to make the lycra gloves, which I believe could be of great assistance in extending the use of my hands, this may take Â several months and therefore, at the end of the day, not provide the help I need now.
(Postdate entry -12 Dec. It seems that I maligned the NHS . Having spoken to the consultant on Thursday I received an appointment but this morning for New Year’s Eve.)
AbilityNet – for whom I have the highest regard for their generosity in providing equipment to assist sufferers to use their computers Â – take far too long between initial consultation and the training they provide to use the equipment. In my case 4 months or so. Bear in mind, we are told, on being diagnosed, that we have a potential life span of 2 to 5 years and thatÂ 50% of sufferers die within 14 months of diagnosis (this cheerful fact being confirmed by Henry in the documentary – see below).
Where is all this gripe lading to. I am only too aware that there are thousands of kindly people who are trying to help, not least the MND Association, however, what I’m suggesting is, there is not enough early hands-on assistance given. Maybe the RCA should make an appointmentÂ soon after diagnosis to go through various practical assistiveÂ options.
While I am banging the drum I will make one more observation. I noted from the MND website that there was a programme on Channel 4 on 4 December entitled Into That Good Night (inspired byÂ Dylan Thomasâ€™s poem – Do Not Go Gentle into That Good Night). This programme featured, amongst others, Henry, an MND sufferer, but it was only by accident that I came across it, as I happened to be looking for something on the MND Association website, and discovered the programme.Â I wish I hadn’t. I found the film perturbingly depressing. As the press release said â€˜it provides a rare insight into what it is like to live with the knowledge that you might soon die.â€™ How inspirational is that ? To be fair to Henry, the MND star in this film, I felt that he did not provide any comfort to other sufferers whatsoever,Â quite the opposite.
We saw little more than just his face which most of the time was utterly miserable or crying and learned how frustrated and angry he was by being visited with this disease. Frankly, I do not think that such a programme did anything to advance the awareness of MND or how one can cope with this insidious disease . Apologies to Henry, I’m sure he did his best, but he certainly wasn’t â€˜going gently into that good nightâ€™. I’ do not read Dylan Thomasâ€™s, â€˜Rage, rage, against the dying of the lightâ€™ asÂ literally meaning the need to express anger and rage. This, I think, is best illustrated by the penultimate verse of this poem:
Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay
Rage, rage against the dying of the light
I’m given to understand by an unimpeachable source that Thomas was really talking about â€˜enrageâ€™ at his father’s death, not rage at all. However,Â Enrage, enrage against the dying of the light would not scan properly.
Of course, we are all frustrated, that is a perfectly normal reaction, but the message to get across is to get the best out of what you’ve got left. That is the whole purpose of this blog. I too was told of the 2 to 5 year death sentence and the possibility of dying within 14 months but then I was also informed that one in 10 can Â live for 10 years, or more, so I immediately raised my hand and said I will have that one. My gripe is therefore with the MND Association for publicising this in the first place. I know I will not make myself very popular by taking this stance but I shall be interested to learn other people’s viewpoints. Maybe I am alone in the way I think about such matters.
Then we have one of the MND Associationâ€™s leading patrons, David Niven, whose only contribution seems to be,â€œ Whatever you do, don’t get this bloody awful diseaseâ€ A pretty pointless comment. As if any of us have a choice. However, there appears, on the MND website, a great number of far more positive and inspirational comments, Â from many other sufferers but the problem is the writing is too feint to read and does not stay long enough on the screen. Perhaps something can be done about this so that we could benefit from the experience of these brave and positive people.