Sunday, February 21st 2010

A consequence of reduced arm movement

My hands have started to swell up. Both the fingers and the back of the hands are starting to look puffy and bloated and I believe are contributing to my difficulty in being able to clench my fists. MND isn’t directly responsible for this but it is one of the secondary complications that can arise as mobility and upper limb movement become more and more restricted. The swelling has become steadily more apparent in the months since I’ve changed the way I interact with my computer and the environment in which I work. Up until last autumn I had my computer set up on the dining table and as this was quite spacious there was plenty of room for me to rest my left arm on the table surface whilst my right arm was supported in a modified ergo rest. So essentially both arms were laid out horizontally and would remain in this position for some hours. But after my accident last autumn two things changed which together have contributed to my current situation. The first was changing my workplace to the study upstairs where there is no room on my desk to rest my arms. The second was making the switch to speech recognition software and in so doing having little need to interact with the computer keyboard. So nowadays a lot of the time I now spend at the computer is with my hands resting in my lap whilst I dictate into the microphone. Consequently the cumulative effect of having my arms immobilised and angled downwards for months has resulted in a kind of pooling effect as the fluids in my body constrained by the laws of gravity fall downwards until they can go no further.

I contacted my physiotherapist recently on this matter, explaining what I thought was happening, and asking for advice and if there were any techniques we could incorporate into my morning ritual that would help alleviate the problem. The answer I got back basically confirmed what I had already managed to work out for myself and just suggested that I keep my arms level on the table. So over this weekend Ali and I have been experimenting with ways of propping up my arms. We tried stuffing cushions down the side of my office chair and laying out my arms on top but found that it wasn’t very comfortable or easy to keep the arms in position. Today has been a bit more successful as we’ve called into service my old modified ergo rest and mounted it on the left-hand side of my laptop so that now both hands and forearms are supported in a horizontal position (even though they’re not actually being used). I’ve been trialling it for most of the day without any discomfort so it certainly looks promising although of course it is way too early to see if it can minimise or even (fingers crossed) reverse the swelling.

So, just one example of the consequences of reduced limb movement. Not peculiar to MND of course, but it does illustrate how the body can break down and change its shape without regular movement. Just think for a moment how often in normal life we move our arms during the course of a single day. It might be to brush our teeth, wash our face, comb our hair, scratch our heads, reach into a kitchen cupboard, eat a meal, drive a car, pick something up from a supermarket shelf. The list goes on and on and of course we give little thought to it. But it doesn’t take too long for the effects of not performing these mini exercises to manifest themselves. To think this photo could be me someday if I can’t work out a way of reducing the puffiness! smile_regular

The shape of me to come? The Stay Puft Marshmallow Man! 🙂


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Losing my grip

The ability to use our hands to interact with the world around us, to fashion tools and to wield weapons, has since the dawn of man separated us from the rest of the animal kingdom and has given us (in conjunction with our increased brainpower) a distinct advantage, enabling us to tame the world around us. In addition to being a very communicative species we are also a very tactile species. We love to touch things, hold things, and indeed each other.

My ability to use my hands for the wide range of everyday tasks that we don’t even give a second thought to began to diminish earlier in the year. Fortunately I don’t appear to have MND in its most aggressive form, but nevertheless the disease progression has remained relentless to the point where there are now visible changes to be seen in my hands.

The first clear sign that the disease had started to reach into my hands was when my typing accuracy began to decrease. I would find myself either typing the wrong character, missing out the spaces between words, transposing characters, or simply missing out characters altogether. At first all this was rather subtle and intermittent so I didn’t pick up on it straight away, after all, I’m not the greatest typist in the world so typos were just part of the computing experience for me – much like everyone else I suspect. However, as the weeks and months passed it become more noticeable and coupled with the next visible symptom, convinced me that the disease had found a new area of my body to have fun with.

I started to notice that the ring (forth) finger on my right hand was beginning to twitch uncontrollably. It was rather disconcerting to watch the finger jump side to side incessantly for protracted periods (in fact it’s doing it right now as I right this blog entry). The symptom is known as fasciculation (muscle spasms) and in my case was a sign that the muscle tissue had or was loosing its nerve connection. Fasciculations can occur for other reasons too because muscle tissue is electrically excitable tissue so just because a muscle twitches it doesn’t mean someone has MND!

Gradually as the muscle tissue in my hands and forearms began to weaken I would find myself making a conscious effort to keep the fingers extended and pointing outwards. Left to their own devices the fingers, most particularly the ring finger, was having a tendency to curl inwards in a claw-like fashion so that the tip of the finger would almost be touching the palm of my hand. At times trying to straighten out the fingers is like fighting against an invisible force. It’s as if someone has placed sticky tape on the inside of your finger and joined it to the palm. Now try imagining what it is like fighting against that resistance and opening the fingers when they are held fast by the tape. That’s the best way I can think of to describe it.

The knock-on effect of dying nerve cells is visible muscle wasting (or atrophying) brought on by lack of nerve stimulation. I started to notice this effect some months ago when the side of my hand adjacent to the little finger began to feel very soft. A slight depression of the skin would bring me into contact with the bones beneath the skin. I then began to see a visible depression develop in the skin between the thumb and forefinger of my right hand. The firm and bulky muscle tissue was starting to waste away leaving the softer skin. So far this wasting seems to be more pronounced in my right hand.

As the muscles in the wrists began to weaken I started to find it increasingly difficult to fold my hands out straight. In fact it is now so bad that if I am sitting down and resting my arms on the arm rests of my chair with the hands dangling over the edge it is practically impossible for me to raise the hands up. Along with my weakened grip it means that I now have to be very careful when picking things up as the hands have an unpredictable tendency to ‘drop’ which can also result in loosing my grasp. But I’ve been very good so far. I have only dropped three things and not had any breakages – yet! Sad to say though I now have a worse grip then a girl! At this rate I won’t even be able to crush a marshmallow :-).

Despite all the wasting and weakening that has occurred in my hands and wrists my sense of touch and my ability to detect changes in temperature, texture, vibration and moisture remains unchanged. MND is not known to affect the senses. I can certainly attest to being able to detect heat as not too long ago my weakened right hand fell on a hot baking tray – I just didn’t have the strength to hold my hand above the surface when my wrist suddenly decided to ‘drop’.

Over the months the range of everyday tasks that have been impacted has steadily grown. At first it was things like the aforementioned typing where fast repetitive finger movements are the norm. Then I started to experience problems using the pruning shears to trim back some of the shrubs early in the spring. Just trying to cut through even relatively small branches was leaving me exhausted.

Because high street shopping isn’t very easy without help these days I tend to use the Internet on a fairly regular basis. But the problem I’m then faced with is unwrapping the parcels as I don’t possess the strength to rip the packaging apart and find using scissors to be about as difficult as pruning shears.

More recently I have noticed that I am loosing the precision dexterity required for such tasks as doing up the buttons on a shirt or doing up the laces on my shoes. It now takes a few minutes or more as I fumble around trying to bend my hands in a way that will allow me to use my fingers, all the while mindful of possible cramp from forcing my arms/wrists in directions that stress the muscles. Even trouser belts are becoming a bit of a challenge to pull tight as the strength in my hands fades. And for all these tasks I’m having to rest my hands on a flat surface because of the weakness of the wrists.

The kitchen presents a whole range of obstacles for me these days, a lot of which is down to the way modern food is packaged. A few days ago I struggled badly just trying to open a new bottle of milk. First I couldn’t unscrew the plastic cap and had to resort to a pair of nutcrackers and then I couldn’t find the strength to grasp hold of the tab and peel back the foil. In the end I had to resort to puncturing the foil multiple times with a small knife, like a blue tit pecking at the gold top! Fruit juice cartons are another nightmare with their plastic pull rings and caps that have to have their seals broken. Food wrapped in heat sealed plastic bags now have to be cut open with scissors. Tins are another recent casualty and I’ve had to buy a special tool that gives me some extra leverage to pull back the lids on pull ring cans whilst more conventional tins are now opened with a very useful hands-free electric can opener.

Food preparation often takes so much effort that by the time it’s prepared I’m tired out. Peeling the shell off an egg – a time consuming nightmare as I struggle to get my fingers to work! Trying to spread butter on bread – no longer simple as I cannot hold a knife upright for more then a few seconds. The kitchen has started to become a high risk area as handling hot baking trays and saucepans of boiling water are now a risky business because of my unpredictably weak wrists. One of these days I’m either going to get burnt or scalded.

Lately I’ve started to see a steady decline in my handwriting as I struggle to hold a pen steady long enough to form the characters. Recently I had need to fill in a form and it was a painfully long experience for what was only a few lines of text. I use a pen with a rubberised grip these days and it has at least helped with my ability to hold the pen (weak grip means my fingers have a tendency to slide down the body of the pen) although the legibility of my writing continues to fall. Fortunately apart from the odd form or greetings card most of my writing is done on a computer so to most people it is not visibly obvious.

The most recent casualty has come from reading books and magazines. It is simply becoming very difficult just turning the pages especially when sitting down. At the moment I’m spending more time on the computer but I love reading so this will really start to cause problems for me as we move into shorter evenings.

So there we are. I’ve tried to give some examples of what can happen as the hands and wrists start to fail in terms of strength and movement and how it can affect daily life. This disease is constantly creating new problems for me to overcome and thankfully so far I’ve been able to meet the challenge and maintain my independence but I’m afraid that won’t always be the case. But before it gets that bad I think it’s time I did something about it. I’ve had this disease long enough now and I’ve decide it’s not really for me so what I’ll do is put an advert in the paper and sell it: FOR SALE: Motor Neurone Disease, one owner from new, hardly used, free to a good home! 🙂


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