Happy Easter

To all my family and friends, my lovely carers, my fellow PALS (people living with ALS), and those kind enough to visit my blog, may I wish you all a very happy Easter. Enjoy the bank holiday break and keep an eye out for the Easter Bunny!

I would like to say a big thank you to those of you who came bearing gifts of chocolate and cards. They were very much appreciated. Also a special thanks goes to Val and Ann for the lovely potted flowers. They add a lovely splash of colour.


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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.


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Wednesday, April 13th 2011

A week in bed

Things have not been going too well for me lately. I’ve just spent the past week in bed trying to alleviate pressure on my bottom! As a consequence I guess of spending so many of my waking hours in a wheelchair each day, and not being able to reposition myself on the seat, I have begun to develop some pressure sores.

I suppose it was inevitable that sooner or later I would succumb to pressure sores. My inability to reposition myself and thereby redistribute my weight has meant that areas of my skin that I sit on have been subjected to constant downward pressure for most of my waking hours. What started out as skin irritation with the terrible sensation of itchiness whenever the pressure was relieved has quickly developed into the early stages of several pressure sores with broken skin resembling a graze.

I must admit I never realised how bad pressure sores can get until a couple of my carers explained them to me and I had a chance to dig a little deeper on the Internet. Pressure sores occur when the flow of blood through the skin is disrupted (as the skin is subjected to pressure). Without a blood supply the skin area is starved of essential oxygen and nutrients which can lead to the skin breaking down and a pressure ulcer developing. In extreme cases they can develop into open wounds revealing the underlying bone and lead to serious infection.

Not wishing to allow them to get any worse I took the advice of my carers and confined myself to bed rest in the hope that I could distribute my weight over a greater area. That was more than a week ago and it is only now after being told by the district nurse that the dressings could be removed and that they were healing nicely have I allowed myself to get up for a few hours each day. Although I feel a lot better and I’m not experiencing the discomfort I was, I realise that it wouldn’t take much for the situation to reverse itself once again, especially as I’m discovering that after a few brief hours the skin under pressure starts to heat up and I feel like I’m resting on the base of the wheelchair seat.

I think that there are two problems: the first is the continual loss of muscle tissue which is now reaching a point where it is affecting my ability to sit in a chair for any length of time and be comfortable. More often than not these days I can feel my bones digging into me which is a very uncomfortable feeling and quite distracting when I’m trying to concentrate on something. The second is the type of wheelchair seat cushion I’ve got. Although it felt quite comfortable when I first got it I think that over a period of time the constant pressure on a small area of skin has had an adverse effect. Clearly I now need a proper pressure relieving seat cushion and last week I had a visit from the folks at Wheelchair Services to do an assessment of my needs which has led on to them recommending that I trial a ROHO seat cushion. For anyone who’s not seen one of these, it’s sort of like an upside down extra large egg carton with each pocket filled with air. The idea is that each section is inflated, the user then sits on it and air is then gradually released so that you sink into it. The one I tried was not a good fit for my wheelchair, nor as deep as my current seat cushion, and once seated at my desk I found it very difficult to use my legs to operate certain aspects of my computer. I think the reason is because it is not a firm stable surface and my legs, already missing a lot of firm muscle tissue, have a tendency to roll apart. Wheelchair Services are now looking into the problem for me. If it wasn’t for my computer’s foot controls some of my current problems would simply melt away and I could then leave my wheelchair leg supports attached to the wheelchair. Unfortunately I have yet to find a reliable alternative hardware method of controlling the mouse functions although I keep looking.

Until the pressure relieving issue has been sorted out I am having to compromise somewhat between resting on the bed for long periods with short intervals of several hours sitting in my wheelchair. Obviously I’m not managing to get much done and I’m filled with frustration that time, already a very precious commodity, is not being spent in a way that I would wish. Last week for instance we had some of our warmest and sunniest weather this year, and yet I spent most of that time lying in bed with the sun streaming through the blinds. How I would have loved to be outside in the wheelchair getting some fresh air. Fortunately I at least now have a flatscreen TV mounted at the opposite end of the bed and this has been something of a lifesaver in keeping my mind engaged. I’ve been able to keep up-to-date with the news, enjoy some good documentaries, work my way through some of the Top Gear back catalogue, and stroll down memory lane by watching the very first episode of The Sweeney, a hard-hitting police drama from the 70s which was very popular back in the days when I was studying at college! And when all this was too much I had access to plenty of radio stations courtesy of Freeview.

So for now I’m resting for long periods and then rushing around like a mad thing for the few hours each day that I can sit at my computer. The week I’ve just had in bed has been the longest amount of time I’ve spent in bed in my entire life, and I can’t help but think that it is a sign of things to come.

And to really make my week, one of my carers noticed a rust coloured patch on the ceiling of the new wet room directly over the shower unit. Further investigation revealed bubbling paintwork on an adjacent wall and a wet patch on the floor. Since then we’ve had the builders back in clambering about on the roof removing tiles so that they could gain access to the pipes in the loft space to repair the leak (there is no loft inspection cover). I’ve barely been downstairs three months and already it’s leaking!

Oh well to borrow a line from Gone with the Wind ‘tomorrow is another day’.


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