Sunday, August 28th 2011

A Tough Month

I celebrated my 51st birthday last Wednesday not exactly as I imagined it would be but instead wrapped up in bed unable to move and fearful of the future. My breathing continues to worsen, so much so now in fact I have been effectively confined to bed 24 hours a day – every day’! Any attempts to leave it and reposition myself leave me gasping for air. It has been a particularly frustrating month for me as I have seen valuable time squandered whilst I lie here helpless. Even the computer which I have long depended on to keep my mind fully engaged is now becoming difficult to talk to as the volume in my voice continues to diminish. Quite often now I have to endlessly repeat a sentence or phrase before the software is able to understand. No wonder it takes me so many hours to create the simplest documents. My OT has been made aware of the situation so I’m hoping that she can set up another assessment on my needs with AbilityNet. I really hope that they can come up with something soon otherwise I shall be facing the real possibility of being physically unable to communicate with my digital world and those around me. But it isn’t just my computer that is suffering; I am also finding it difficult for people to hear my voice on the telephone as well. In addition, Debbie, one of my carers, has obtained a baby monitor so they can listen out to changes in my voice wherever they are in the house.

My energy levels have fallen through the floor this month. I wake up each morning with very little desire to do anything other than go back to sleep. By the time I’ve got myself sorted out the morning has gone and I have very little to show for it. And so for the rest of the day I drop in and out of sleep seemingly finding escape from the problems of the world around me.

I’ve lost my appetite almost completely now. Very little food gives me any real pleasure and the tastes and textures do nothing to stimulate eating. And yet bizarrely around midnight my stomach is growling in complaint at a lack of normal food even though I know full well that by morning I’ll be struggling with a mouthful of cereal.

I’ll sign off now with a photograph taken over the week leading up to my birthday when my whole team of carers descended on me for a surprise birthday gathering.┬áThere were supposed to be more photographs in this post but there appears to be some kind of technical glitch preventing me adding them to my post. I’ve already spent an utterly exhausting afternoon trying to clear the problem without any progress. I suggest you come back in about a week to see if I’ve made any progress.

With my niece, brother and nephew at my bedside where I now spend all my days. 17th of August 2011

Mark

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Saturday, June 4th 2011

Return to St Michaels

On Tuesday this week I was transferred to St Michael’s Hospice where I have been ever since. I think the intention is to see what can be done to manage my breathing difficulties, possibly try BiPAP again, and sort out what to do about my care package, none of which had been discussed with me yet.

Unlike the constant hustle and bustle of a busy hospital there is a calming influence here at the hospice which I find much more restful. I’ve been able to get into the newly refurbished garden and Labyrinth on several occasions and just being able to get some fresh air and sunshine has made a world of difference. I’ve also got access to my computer again so have something to occupy my mind. My breathing is still giving me a lot of concerns though. I am not sleeping very well and in fact I’ve had several nights where I’ve not got any sleep at all so I’m feeling quite exhausted. Also my breathing is now starting to be dictated by the position I am in. It is for instance becoming harder to breathe normally when sat in an upright position and it is already causing problems when I use my shower chair during the mornings for my personal care. Also I am now having to use the wheelchair reclined back further and I am spending more time lying on the bed catching my breath. In fact this is now where I am using the computer – lying back in bed. But dictating into my microphone is leaving me exhausted so I am steadily reducing the hours I can use it. In addition to all this I am now starting to take anti-sickness pills several times a day to combat the queasiness I feel around mealtimes. After last week’s breathing episode I feel I have turned another corner with this disease and I now face learning to live with reduced abilities once again.

Mark

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Wednesday, May 25th 2011

Fright of my life

It had been a good day up until that horrific moment. I’d been able to spend some of the morning out in the back garden on my level access patio soaking up the rays of the sun whilst listening to birdsong. Later in the afternoon I’d had a visit from one of the lovely carers who used to look after me and we had been able to enjoy a good chat and a catch up. But by late evening when I was being prepared for bed I started to experience difficulties in getting my breath. Each breath was getting shorter and shorter and the situation was developing rapidly. Debbie, to her credit reacted immediately and called the emergency services and placed an oscillating fan in front of me. By this time I was struggling to get any breath at all. My heart was pounding, my skin felt very hot and my whole body was screaming for oxygen. The voices around me seemed to be fading out and all I could cry out in a pitiful voice was ‘I’m dying, I’m dying’. Honestly that’s exactly how it felt. Instinctively in that moment I thought I was going to die as I was thinking ‘so this is how it all ends for me then, on Wednesday evening’. It was a truly frightening experience.

The first responders arrived on the scene very quickly and administered oxygen. Apparently my oxygen saturation had dropped right through the floor. The paramedics arrived shortly afterwards and I was rushed to hospital hooked up to oxygen. I then spent the next few hours having a battery of tests including chest x-rays, blood/gas tests, heart readings. Nothing obvious was picked up (or at least communicated to me) apart from the fact that my CO2 levels were a bit high. Initially there was the possibility that they might have wanted to send me home again but by midnight that was not practical as I had no care package in place for these hours so it was agreed that I would stay in the hospital overnight for observation.

Before signing off I would like to express my deepest gratitude to Debbie for reacting to the situation quickly and professionally. Had she not done so I might not be here now as I have a DNR (do not resuscitate) stipulation for situations like this written into my ADRT (Advanced Decision to Refuse Treatment) should I slip into unconsciousness. I would also like to say a big thank you to the first responders and the paramedics who took such good care of me.

Mark

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Diminished breathing… and its consequences

Breathing is one of those things that we all take for granted. It’s with us from the moment we come into this world until the moment we leave it. Seldom do we give it a thought until, that is, something comes along that affects its ability to function properly. My respiratory system has been in decline since the early days of being diagnosed with MND. Back then though the only indication I had was a set of steadily falling figures obtained each time I had a lung function test. Physically I couldn’t tell any outward difference although of course I knew this situation wouldn’t last forever. Fortunately for me my initial lung function test results were higher than average thanks to all the cycling and walking I used to do (and the fact that I have never smoked). Consequently I could tolerate a greater degree of deterioration before it began to impact me, which in a way bought me some time to adjust to some of the other horrors of this disease. Unfortunately I feel that I have now arrived at that stage and my inability to breathe in a way that I would wish is starting to impact me on various fronts as I come to realise the wider reaching implications of weakened breathing muscles as they slowly paralyse.

One thing I have become acutely aware of these past few months is how limited I am becoming when it comes to speech. By that I mean I struggle to get more than a few words out before literally running out of breath. Long sentences are now beyond my reach as I find myself constantly pausing to gather my breath. Consequently my speech doesn’t flow in the way it used to and is becoming much more of an effort. Because of this I’m finding my attitude to conversation to be changing slightly as I seek out shorter responses in an effort to conserve my breath. Of course reading this blog gives no indication of the effort I now place in the simple act of verbal communication because thankfully I can dictate it in my own time which quite often now is spread over several days.

But it isn’t just duration of speaking that is being affected. Last month I had an opportunity to go out for an evening meal with some of my carers for the first time this year. Although it was an enjoyable experience, I found it almost impossible to raise my voice high enough to overcome the background noise of the people sat around the other tables. The mere act of trying to elevate my voice left me feeling exhausted and curbed my enthusiasm for participating in the conversation as much as I would normally. At times it was simply easier to nod or smile. Not being able to breathe properly has a tendency to make you think very carefully about what you say too. It’s like having an ‘air budget’ which you need to learn to spend wisely. Telephone conversations are now also starting to tax my energy reserves to the point where I am left feeling exhausted in my efforts to make sure that people can hear me at the other end.

Apart from the obvious physical health concerns it can also have an impact on a person’s mental health. Not being able to talk fluently or in later stages perhaps not at all can lead to feelings of social isolation and frustration. With my upper limbs completely useless now and my lower limbs going the same way I am very much dependent on my voice as a means of interacting with the physical world around me. The voice is also something that uniquely defines each of us and is probably much undervalued all the time it is working properly. But without it social interaction is much harder, prone to errors and time-consuming, something that is of particular concern when trying to express how I would wish to be cared for.

Because I have so many eggs in one basket now my voice is being called on to do more and more of the work which in turn is increasing the chances of feeling breathless. For instance now that I am experiencing an increasing level of difficulty in using my feet to operate certain aspects of my computer system, it is placing a further load on my voice as I am forced to verbally describe, sometimes in quite precise detail, locations on the screen for positioning the cursor or insertion point. Perhaps it is not so surprising then that often now I feel quite drained by the end of the day simply because I spent hours dictating to my computer. The time is fast approaching when I will be forced to spend most of my time (when sitting at my computer) reading, listening and watching than actually working i.e. writing, photo editing etc. Slowly but surely this awful disease is changing me from an active contributor to a passive observer. In a sense it has already begun as lately I find myself spending more and more time reading downloaded books and magazines. As these require little interaction from me they don’t leave me feeling like someone has tightened a belt around my chest.

Another consequence of diminished breathing ability is my very poor appetite, something which in recent weeks has fallen to a point worse than it has ever been. In fact a large part of my diet lately has come direct from high calorie drinks which require a lot less energy on my part to consume. Solid food is becoming something of a token gesture and my diet is slowly becoming more liquefied as the weeks go by. It may not sound pleasant, and I’ll admit as much myself, but they do have the advantage of requiring a lot less energy to consume. This is a real shame because of course we don’t just eat to survive: we also eat to be sociable and for the sheer pleasure all those different smells, textures and tastes can bring. Eating is part of what it means to be human, it’s how we evolved to exist, and once again MND is denying me a human experience. The funny thing is I can lie awake late at night with my stomach rumbling thinking of all my favourite foods and how I would love to eat them right that moment and yet I know full well that the moment I wake up my appetite will have deserted me once again and I will struggle to eat some breakfast cereal.

With all the things that are going on lately centred around my breathing it feels a little like my life energy is slowly draining away. Recent experiences with difficulty in getting to sleep, feelings of nausea, and even a slight difficulty in breathing later in the evenings and after I exert myself, leads me to believe that I am once again approaching the next stage in the development of this awful disease. But this next one is a serious one because it impacts a life critical function and once that is seriously compromised…

Ultimately of course that is exactly what motor neurone disease is: a slow form of suffocation. Is it frightening? Of course it is. I’d be lying if I said it didn’t concern me. I certainly don’t want to end my days gasping for my last breath. I’ve already experienced a couple of nasty choking episodes and they were bad enough.

I’m due to have a meeting with my palliative care consultant from the hospice next week so I guess I shall be finding out soon what the next steps are. In fact ‘steps’ is a good way of describing disease progression in MND. Like a staircase you go along a little way having adjusted as best you can to your circumstances, and then suddenly you drop down a level as the nerves that control a particular muscle function finally reach a point where they are unable to function adequately enough. At this point there is a flurry of activity from the healthcare professionals as they rush around performing assessments, organising equipment and tweaking the care package. And then for a while things stay relatively stable whilst you try to adapt to your new lifestyle, all the while fearing the next ‘drop’ and what it will mean.

Mark

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