Second anniversary

Two years after being diagnosed with Motor Neurone Disease

Until recently I considered myself as one of the lucky ones. I went through my entire adult life with barely a cough or cold. I used to congratulate myself on my good health and give thanks that I was not like some other poor unfortunate people. But in the summer of 2007 it was becoming obvious that something peculiar was happening to me. What was happening to my strength? Why was it becoming increasingly difficult to hold my arms up for any length of time? Jobs around the home and garden that required extensive and repetitive movements were beginning to tire me out, whilst lifting boxes of office documents at work were starting to feel heavy. And yet in every other respect I felt fine. There was certainly no pain or any form of discomfort. It was a mystery. My doctor was as mystified as I was so in the early autumn of 2007 I was referred to a neurologist and thus began a series of tests over the next two months that would eventually, by elimination, rule everything else out leaving only the horror that is MND.

It was two years ago today that I received my diagnosis. At that time I didn’t really know anything at all about the disease so couldn’t totally comprehend what it meant or how I would live with it. Nevertheless being given a diagnosis of an illness that cannot be slowed down, stopped or reversed, and being told that my life would be significantly short was devastating enough. Just how do you cope with the knowledge that fate has dealt you a cruel blow and will rob you of decades of life? I wept for a future I would never see.

So here we are in late 2009 two years on from that terrible evening when I sat across from the neurologist in that bright but sterile consultation room listening to the worst news of my life. So do I still think I am one of the lucky ones? Actually yes, because I’m still here when other people diagnosed after me have sadly already lost the fight. Nevertheless the effect of more than two years of nerve degeneration and muscle wasting have taken their toll and have impacted so many aspects of my life. In the first year after diagnosis I lost two cornerstones of adult life: the ability to work and support myself financially, and the ability to drive a car and the freedom that brought me. I also had to say goodbye to cycling, something I really enjoyed during the warmer weather. It also meant giving up all hopes of being able to maintain and improve my house and garden myself. And in this past year it has become a lot more personal as I had to say goodbye to dressing and undressing, washing and shaving and even feeding myself. Hobbies and interests that I’ve had with me all my adult life such as reading a good book or the sheer enjoyment of composing and taking a good photograph are becoming nothing more than a memory. I can’t even hold a pen to write my name anymore.

To illustrate where the disease has taken me in the space of just two years just consider bedtime. A carer arrives at 9 PM to brush my teeth, undress me and tuck me into bed. There I lay barely able to wriggle or lift my head off the pillow, my arms almost helpless resting on my legs whilst an emergency lifeline call switch is strapped to my ankle. I cannot turn onto my side so have to lay on my back all night. My shoulder blades constantly feel like they are digging into my back making it very uncomfortable to rest in the same position. If I get an itch all I can do is try and ignore it. If the duvet slides off me then I’ll spend the rest of the night uncovered. If I need to visit the bathroom in the night I have to hope and pray that I can find enough energy to roll sideways and catapult myself off the bed. The simplest of life’s routines have become traumatic.

In the first year I lost all motor control for my arms so that they are now nothing more than dead weights. This was cruel enough as we use our upper limbs to interact with the world around us but at least I could take some consolation in the fact I could still get around easily enough. But it was short lived as I have had to come to terms this year with steadily diminishing mobility. I started the year being just about able to go for a one hour walk by myself. But as the months rolled by the distances and time that I could stay out gradually decreased to the point where I can do little more than walk around the house and even then only on one level. It often feels that the world around me is contracting as most of my time is spent indoors, a stark contrast to 2 years ago.

It would seem that once the disease has started to attack a particular area then loss of function can occur surprisingly quickly. But the disease is also unpredictable and nobody seems to be able to say where it will strike next or how quickly. Hanging over my head like a dark cloud all year has been my declining respiratory system. It took a big drop last winter which immediately started the alarm bells ringing forcing me to consider for the first time the twin options for having a PEG and NIV. All of a sudden it felt like I had turned a corner, that it was no longer just a disability, just an inconvenience to the way I lived, but instead was becoming something that would have an end date. At the time it was quite a shock but like the diagnosis itself I have steadily over time tried to come to terms with it. And so far, fingers crossed, I’ve not actually had need of either.

But despite all of the changes that are going on inside of me it is not all bad news, in fact there is still much to be grateful for. My breathing for example appears (at least to me) to be fairly stable at the moment judging from the fact that I can still get a good night’s rest and not wake up with a headache or feelings of nausea. My speech remains unaffected which is just as well as I depend on it not only to articulate my thoughts, feelings and wishes, but also to control (to some degree) my computer. Although I do have to say that the power of my voice is diminishing and I’m finding that I’m taking frequent pauses when talking to people, a sure sign of diminished lung function. But at least I’ve not yet experienced any problems swallowing so have not had to make any adjustments to my diet.

The care that I receive at home has become steadily more pervasive and time-consuming, and I have had to get used to a steady stream of unfamiliar faces coming through my door and learn to regulate the rhythms of my life to fit in with the care schedule. Slowly but surely being cared for has woven itself into the very fabric of my life. Of course I’m very grateful for it and indeed completely dependent on it but it is also increasingly difficult to find the time to do the things I want to do.

My need for equipment and adaptations to the home has been steadily growing throughout the year and if there is just one piece of advice that I could pass on to anybody reading this that has been newly diagnosed it would be ‘plan ahead’, especially if you are considering large structural changes to your house and hope to take advantage of a grant to fund it. I’m currently in the process of awaiting planning permission for an extension to the house, something which was instigated many months ago, but on hindsight it would have been much wiser to have started looking at it this time last year. But last year my legs were in a much better condition than they are now and so I was lulled into a false sense of security and caught a little off guard when they did begin to deteriorate. So the lesson to be learned is that with MND it is pretty much a given that you will lose the use of your arms and legs so it is best to be prepared for this well in advance. I should learn to take my own advice more often! Something else to appreciate is how transitory some equipment can be. As I’ve travelled through the past two years I’ve left a trail of discarded gadgets behind me as the disease slowly affects more and more of my body. I get very little use out of some of these items before paralysis and weakness consigns them to the scrapheap.

MND can present a real challenge for those wishing to carry on as normal a life as possible. There are some people in particular that I wish to thank for their tireless efforts in helping me maintain as much independence and dignity as possible. Firstly a big thank you to Marion, my OT with Adult Services who has done so much for me in acquiring equipment in a timely manner. I’m also indebted to Richard, my ever helpful Remap engineer who’s put together some wonderful little gadgets that have made such a big impact on my life. I would also like to say a big thank you to the MND Association for funding my new emergency lifeline as well as the voice recognition software which I use all the time now for this blog (in fact it would no longer be possible without it).

Because of the global nature of MND it could be all too easy to let it overwhelm you and that indeed would be a tragedy for it would waste the precious time left. Yes, in the space of two years it has completely transformed my life and at times things do indeed seem bleak. But with the right kind of care and support in place life can be made bearable. I am quite lucky in living where I am because it’s often been said that the care and support you get is a bit of a postcode lottery. Fortunately I have a very good support network that has sprung up around me without my having to ask. Surprisingly even the grant process for the extension wasn’t as traumatic as I had been led to believe from reading the stories of other people.

Remember the film Forrest Gump? There was a popular saying that went ‘life is like a box of chocolates, you never know what you’re going to get’. I’ve always liked that saying, I just never imagined that I would be lumbered with the coffee cream! smile_regular I figured out a long time ago that there would be only two ways I could approach this cruel disease: I could either let it all overwhelm me and spend each day feeling sorry for myself, or I could do what I have chosen to do which is to try and inject as much humour into my life as possible. Surely it is far better to be remembered as somebody who made other people happy? That is how I would wish to be remembered. I won’t pretend that it is easy, I’m only human after all, and there are days when it is hard to see the good in things especially when I know what is coming. The constant upheavals in my care package are not making things any easier. Thankfully I’ve so far always been able to pull myself back up, and long may it continue.

In the course of my journey I’ve met so many kind hearted and decent people; from the healthcare professionals monitoring my progress, to the carers looking after me on a daily basis. It has made a tremendous difference in how I get through each day. And on that note I would like to thank all my family for their continued help and support; to my brother Jason who continues to do my weekly shopping and help out with various little tasks that lie waiting for him each time he comes to visit; to my brother Chris who despite living at the other end of the country calls me every week for a chat; to my uncle Alan and aunt Joan who have been ferrying me around on hospital visits and generally taking care of me when I go to visit them. I’d also like to say thank you to Ann and Francesca, my ever loyal carers who have been with me throughout this year and have done so much to help lift my spirits. Thanks also go to Jim and Val, my friends from the neighbour care scheme who are my constant companions on the regular visits to see my doctor and in some cases to the hospital for tests. I’d also like to say thank you to Gavin the Gardner who’s done a wonderful job this year in keeping the outside of the house looking very presentable. In addition I would also like to say thanks to my friends who e-mail and phone me and who make me feel like I have not been forgotten. It is very much appreciated. I would also like to take the opportunity to thank all the people out there who have been kind enough to drop by and spare a few moments reading my blog, and especially those who have been kind enough to leave comments and messages of support in the guestbook. It really means a great deal to me and I hope you’ll continue to drop by for the journey ahead. I have no idea what the coming year will bring and I try not to dwell on it too much but I think I’m going to need all the help and support I can get.

And finally, talk about events conspiring against me again. I had hoped to make the most of the lovely autumnal sunny weather were having today and ask Francesca to take me out to one of the parks for a spot of fresh air and an opportunity to get some pictures of us together to mark my second anniversary. Unfortunately Francesca has not been feeling very well at all so we had to cut our time together down to the minimum as I didn’t want to see her suffer (or for me to catch anything). But before she left I did manage to get her to take at least one picture of me in my study to mark the occasion. Thank you Francesca, you’ve done your usual wonderful job! Get well soon.

Taken this morning in my study where I shall be based throughout the winter months. Peeking out from behind my shoulder is the Gooseneck microphone that I use for my blogging, and the new extended arm support can be seen in the foreground. Without these items I would now be helpless!


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One Response to Second anniversary

  1. jane c says:

    Ah! Someone else who doesn’t like coffee creams!!

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