Sunday, August 22nd 2010

End of the week catch up

Okay, it’s time for a bit of a catch up on the day-to-day stuff which has been rather neglected of late as I poured all my energy since leaving the hospice into migrating the blog to its new home. That project is almost complete now and the next step will be to raise the profile of the blog so that it shows up in search engines. My old blog site did very well in Google search and I’m hoping that the new one will fair just as well now that I have registered it. In the meantime it has been encouraging to see that traffic during the first full week has been quite good. It’s certainly nice to see familiar names find their way to the new site! And thank you for all the lovely comments I’ve received lately. They are always very much appreciated.

Aches and pains

I’m starting to get a lot more pain in my arms and shoulders now. In fact it’s even starting to become a problem in my legs and neck. I suspect it’s a combination of disease progression, i.e. muscle wastage, and lack of mobility. After lying in one position all night my muscles simply stiffen up to the point where it is quite painful to be handled. I get the same problem now sitting in a wheelchair all day. In fact when I think of it there is a clean split straight down the middle regarding how I spend my time i.e. 12 hours in bed (not all asleep) and 12 hours in the wheelchair. Perhaps it’s small wonder then that I’m getting so many muscular problems now. I do of course still have some passive physiotherapy exercises performed on me each day but at times it does feel like we’re fighting a losing battle. In fact because my arms have become so immobile now we are repositioning and giving them gentle exercises every couple of hours. It’s a case of three wiggles, two waggles and no woggles! In fact one of the first things you learn in physiotherapy school is to never woggle a client. Can you imagine the headlines if it ever got out: ‘Man found woggled’! smile_regular

A consequence of sitting in a forward facing wheelchair all day is that you tend to look straight ahead for long periods of time. This has the effect of 1) only seeing people as they appear in your field of view, and 2) getting a stiff neck. I’ve started noticing lately that it is becoming a bit painful at times to turn my head through 90° in either direction. Now I have to try and remember to make a concerted effort to move my head from side to side at frequent intervals to alleviate the problem.

The above problems once again show how a lack of regular movement in any particular muscle group soon leads to problems. Just think for a moment how much an able-bodied person will consciously and subconsciously move the various parts of their body during the course of a day. When I think back to all the cycling and walking, the gardening, the DIY and other physical exercises I used to do. Sigh…

One thing I have started to do recently when I’m hoisted up from the bed each morning is to use my legs to swing backwards and forwards as I push against the mattress. My carers thought I was doing it for the fun of it but I’m actually doing it for the exercise and as a last defiant gesture against an unrelenting disease. So for a few minutes each morning I can create this illusion of moving myself as I sway backwards and forwards. And yes it’s fun too! smile_regular

Care package

We’re in high summer and as usual for this time of year my care package is creaking and groaning a bit as various people in the team take their annual holidays. This time round I have the added problem of requiring double ups several times a day and this places a further burden on the care agency to allocate staff. The one person they did allocate to be a regular helper on the double ups has been off more than on lately and at the moment I seem to have an endless stream of strangers coming through the door every couple of evenings. This is far from ideal particularly as it is always at the times when my care is most personal. And to be honest I’m getting really tired of lying half naked and paralysed on my bed whilst yet another perfect stranger stares down at me!

On a far more positive note it was only through this constant stream of new faces was I introduced to a very charming young Nepalese woman who created a big impact with me from the word go with her quick learning, proactive approach to work. Here was someone who was using her initiative rather than standing around waiting to be told every little thing. In many ways she reminded me of the way Francesca used to work, particularly as both of them came to me with very little experience of working in the care industry. I guess with some people it just comes naturally. And like Francesca she has a very friendly and likeable personality that I found myself instantly warming to. As the marketing folks would like to say, she ticks all the right boxes! I’m now keeping my fingers crossed that she can join my care team on a regular basis fingerscrossed.

And lastly, at least on the subject of care, I would like to say a really big thank you to Debbie who has done so much to keep the care package running as smoothly as possible these past couple of weeks. She has amazingly worked 11 consecutive nights, in addition to all the weekday and weekend hours she has done for me, whilst covering for other staff who are on holiday. What a trooper!

A bit of an emergency!

I had a real fright last Friday morning when Ann greeted me by telling me that water was dripping through the kitchen ceiling adjacent to the strip light and pooling on the floor! I’m normally fairly sleepy first thing in the morning but with news like this I immediately pricked up my ears as the one real fear I have is being trapped and paralysed in a burning building. And as we all know water and electricity do not mix!

A quick peek in the airing cupboard directly above the kitchen revealed a wet carpet. This was traced back to a weeping valve controlled by one of the electric zone actuators. Whatever happened must have occurred during the night whilst I was sleeping. I shudder to think what could have happened if the water had found its way into the zone actuator or the strip light.

We tried contacting my local plumber but couldn’t get a response. In the end the solution was much closer to hand. The builders working just outside in the garden were able to contact a plumber they use and who subsequently turned up at the door within the hour, identified what needed to be done, went away to get some parts, drained the system down, replaced the parts, refilled the system and had everything working again by lunchtime. Although it was only one of the valves which had failed I decided to have them both replaced as they were both the same age. I figured it was only a matter of time before the other one went anyway.

* * *

And finally just before I sign off I would like to say thank you to my friends Bill and Kim from Eli Lilly who have both sent me some very nice e-mail letters lately. They were very much appreciated.


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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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