20 January 2012
I have a confession to make. When I first started this blog a little over four years ago, my objective was to share with other MND sufferers and their carers, in effect, how I would die from MND, making the best of every day that I had left. I had no idea how long this journey would be or how I would cope with vicissitudes I would have to cope with on the way. At the time course, I did not know whether I would fall into the first group 50% who died within an average of 14 months, or the second 50% who would go within five years. Then there was that of one in a thousand who could last longer. I said jokingly that I would take that one I’m now over four years-the first symptoms of the MND showing themselves in September 2007-and I suppose I have every expectation of exceeding the five years.
The confession I refer to was that although I have attempted to maintain a blasÃ© and cheerful outlook on this dreadful disease, and what it’s doing to me, it has not always been easy. As time has gone by and I have become more and more immobilised to the point now that I only have a little use of my arms – my hands both of which are curling up – are useless, I do tend to get rather low in the evenings. This is not surprising as the key symptom of MND is apparently extreme exhaustion. So from around 7 .00 p.m. onwards, until I go to bed. I’m usually feeling pretty low and slightly depressed and there are times when my frustration bubbles over and I want to scream and shout and I sometimes do!
My regular readers may think I lead the life of O’Reilly, I’m always going on about all the wonderful things that happen to me; the friends who call; the lunches at the Cricketers; the outings to golf and Lords ;this champagne and so on, and I fear that, in some respects, this might look like showing off. It really isn’t. It is, what it was always intended to be, merely a demonstration of someone continuing to do a number of things that he did before he was diagnosed with this disease. I was setting out to show that there is an alternative to sinking into a deep depression and curling up in the corner waiting to die.
Of course, it helps enormously if you have an angel of wife as I do. She looks after me wonderfully well, particularly in the personal little things she has to do for me which I have always dreaded for the potential lack of dignity. She even puts up with my occasional outbursts of frustration because, as she says, she can fully understand how awful it can be to someone who has always been very active. I suppose living with someone for half a century has the benefit of a deep understanding between you. Many’s the time when we comment on something and the other says they were thinking about the same thing themselves. In fact, without her. I wonder how long I would be prepared to carry on.
I say all these things because in themselves they may be a comfort to the reader who perhaps thinks that when they gets low and depressed, that they are different from me: not so. There are certainly times, fortunately not too often, when I begin to wonder whether I am nearing the end, so far, in terms of my quality of life, and then wonder how best I could put an end to it all. If I stop eating and made it clear in my living Will, that I was not to be force fed, how long would it take me to starve to death and would it be painful, or can I be sedated? Fortunately, these morbid thoughts are rare but my confession to you all is, that like you, I am human
As I say these episodes, which Churchill used to describe as’ his black dog’, are usually infrequent , in my case, mostly in the evenings. Having said that, the following morning I’m usually as perky as ever and have forgotten how low I got the night before. So I revert now to the objective of this blog, Carpe Diem.
I seriously wondered, due to the rather serious nature of today’s entry, whether I would skip the addition of a diversion but I happen to find this particular one which, I hope demonstrates and I still have a sense of humour and, I believe, is a desire to this subject matter on the entry. Click here to read about the Patient Grandfather.
Most days I read your blog having come across it when my wife was first diagnosed with MND early in 2010. Joyce sadly died in the spring of 2011 on our 45th wedding anniversary having achieved so much in the final stages of her life as MND took its toll. She had her black dog moments of course but always managed to lift her spirits such that I believe her last 15 months were in some ways the period of her greatest achievements. I fine craftswoman who lamented the loss movement in her limbs and towards the end ability to speak, she instead managed by her courage and sense of humour ( never lost ) to inspire me and keep me going as I cared for her. Of course she could sometimes be grumpy as indeed I was but we knew those moments were aimed in reality at the MND and not each other. Joyce took her daily glass or two of wine through her feeding tube and always found ways of enabling others to deal with the effects of the disease on her.
The purpose of this comment Mark is to thank you for continuing to show the reality of MND through your eyes and to say that with your honesty you help many others to deal with the effects of MND not only on the sufferer but those close to them. Sometimes understandably the loved one closest to the sufferer gets semi forgotten, Joyce never allowed that to happen and clearly you make sure that doesn’t happen to Alice. You were and are of help to me and your were to Joyce. Keep striving and keep defying. Sometimes it is not possible for the individual to be aware of the life enhancing effect they can have on others. Joyce had that effect and If I may humbly say, so do you.
Your blog today and the comment above by Russ have restored my faith in human kindness. It seems, in this modern rushed world, that we no longer care enough for each other, but that is clearly not so when I read this blog each and every day. It is uplifting to read of not only the spousal support of your dear Alice but of the many folk around you who chip in here and there – amazing, truly amazing. Thank you for being so honest, telling it as it is.
Thank you so much for your very kind comments. Your wife sounds to me as though she was a truly amazing person, particularly in the light of how swiftly she had to come to terms with each stage of this horrid disease. I know only too well how difficult it is to always accept what is happening to your body and remaining cheerful on the surface.
To receive a comments such as yours seriously makes the whole business of doing the wrong worthwhile. You and your wife are precisely the people I write it for. Only someone like you who has been through the caring process, which must have been devastating to good have written such a comment. I know it will give strength to other sufferers and carers and thank you so much for taking the trouble to make it. New
I do hope you are managing to put your life back together again. Not that you will ever cease to amaze your lovely wife but I’m sure she would wish you to be like her and seize the day.
Kindest personal regards
As always, it’s very good to hear from you and I do so agree with you about Russ’s comments.
Only someone who has been through this process as a carer or a patient could have written such a comment. It gives me an enormous amount of pleasure to know that the blog is really reaching people for whom it was originally intended.
You have always been such a faithful follower of this blog, your own honesty shines through so your kind remarks are gratefully accepted.
I hope all is going well in your life.
Kindest personal regards,