The downward spiral

Over the past few months my health has continued to decline to a point where collectively the effects of muscle wasting, weakness, fatigue, paralysis and various aches and pains have made life a lot more difficult. What started off localised is now gradually becoming global. What started off as minor difficulties are now becoming major hurdles.

My weight has dropped off a little bit again despite a generally healthy appetite. For the first time in many years (and possibly most of my adult life) I have dropped below 10 stone. Weight loss seems to go in fits and starts and for the most part the best I can hope for is to try and stabilise it. It is very difficult to actually put it back on and even if I should succeed all I’ll really achieve is to substitute muscle bulk for body fat. Not a particularly good idea as it just means that my diminishing strength and energy will be insufficient to carry around all that extra weight, although there is the psychological benefit of feeling good about holding onto your weight. Having a little extra ‘blubber’ would at least stop me from feeling like a bag of bones around my upper body. Unfortunately the deterioration going on around my shoulder girdle where the collar bone/shoulder joints are is all too prominent. Depressingly it is starting to look like skin pulled tight over bone.

But it’s not just my shoulders that are visibly wasting. I must be losing a little around the shoulder blades too as it often feels like they are digging into me when I’m lying in bed. Turning onto my side also presents problems as my body weight then presses down on the shoulder joint which can become uncomfortable in a very short time and there is a fear that I will end up damaging the joint. My hands too are sadly wasting away. There are dips and depressions appearing all over but most noticeable between thumb and forefinger and in particular when I turn my hands on their side where the profile is no longer as I remember it. Even my legs look a little thinner here and there and I’ve started to notice it is taking a lot more effort to get up from a crouching position. In fact it is easier to get up when I am resting on one knee and using a nearby flat surface to support my arms on. As the months go by I am becoming ever more concerned about bending down for fear of not being able to get up again.

As the muscles throughout my body weaken it is having a subtle but noticeable effect on my ability to quickly compensate for changes in balance. I’ve noticed myself on more than one occasion starting to lean over in one direction before I consciously realise it and then having to quickly try to compensate. So far I’ve been lucky and haven’t yet taken a tumble. I’ve also become more wary of moving surfaces such as escalators and will avoid them where possible. Wet or slippery surfaces are also an increased hazard to me now so during the snowfall we had a while back I made sure I stayed safely indoors.

The loss of strength is bad enough but the steadily encroaching paralysis is worse and brings with it a lot of frustration – and a degree of fear over its long term implications. I’m finding it increasingly difficult to rotate my arms so controls that feature dials such as the dimmer switch on my lounge table light are a real struggle to operate. Even something as simple as trying to read the time on my wristwatch is becoming difficult as my arm will need to be twisted into a position (or rested on a flat surface) that allows me to see the watch face. Bedtime is becoming fun (although not in a nice way) as moving my arms whilst in a horizontal position is extremely difficult. For instance if I rest my hands on my legs and they slide off onto the mattress it is a devil of a job to position them back onto my legs as I cannot even raise them as much as a centimetre. However, if I don’t do it and then try to turn onto my side my arms will simply fall behind my back and become trapped. If I want to move my arms away from my body I have to adopt a snake-like movement (you know, the sort of patterns you see in the sand) but even that is starting to slip away and I am left with trying to move my whole body and dragging the motionless arm along with it. Immobile arms are particularly frustrating when I have an itch that needs scratching or have a need to reposition the duvet which may have slid off me after all the wriggling I need to do with my legs and torso. Getting off the bed in the morning is also becoming ‘interesting’ as I need to do a half-roll in one direction before rolling in the opposite direction and using momentum to swing my legs over the side and standing up – all with using my arms. Unfortunately my torso strength is also weakening. Oh dear…

Because my arms are not used to the same degree anymore there is a danger of the muscle tissue losing its suppleness and becoming stiff. This is particularly apparent when I wake up in the morning after the arms have been lying motionless for hours. Ever since I had a meeting with the physiotherapist not long after I was diagnosed I’ve been regularly exercising my arms by folding them and interlocking the fingers behind my head whilst lying in bed. But lately the paralysis has got so bad that I have almost lost the ability to fold my arms in this way. Concerned that my arm muscles would seize up I arranged to see my physiotherapist this week in the hope that she could work some of her voodoo magic on me. After examining my shoulders she seemed satisfied that there was still a lot of flexibility in them and was pleased to hear that I had been following her tips on exercising them. Because of the difficulties I’m now experiencing performing these exercises by myself I shall be handing them over to my carers. My physiotherapist will be instructing them in techniques where appropriate.

Place your hands on a table with the palms facing upwards. Now turn them over. Easy isn’t it? Well I’ve very recently started to lose that ability too. I notice it sometimes when I’m typing on my laptop with my right hand and glance sideways and notice that my left hand is lying trapped on the table with the fingers pointing upwards like an upturned beetle waving its legs in the air. Without physically getting up from my chair and dragging it with me and then repositioning it all I can do is sit there and make it twitch.

The combination of weakness and paralysis is impacting an ever greater number of everyday tasks. Just getting dressed for example has become quite time consuming as I have almost no strength and very little movement in my arms to allow me to put trousers and jumper on and has required some creative thinking on my part in using various pieces of furniture as dressing aids. They say that necessity is the mother of invention: how true, it’s amazing what you can do when you need to. The paralysis is so bad now that I’ve lost the ability in both arms to send out signals to make them bend at the elbow which makes it something of a challenge to pull my jumper down or pull trousers up or the belt tight. Of course I could wait for my carers to arrive in the morning and indeed I will have no choice but to relinquish some of these tasks before too long but at the moment it is still my personal battle with the disease to try and remain as independent as possible. It can be a fine line however striking the right balance between preserving independence/self-worth/dignity and saving enough energy to help me through the day.

Meal times have become particularly tiresome for me recently as I struggle to position my arms at the table in such a way as to enable me to hold onto a fork and pivot my arm so that I can deliver food to my mouth. Even so movement is extremely restricted which means I have to bend my head down low to the table which results in back ache. When there is a need to actually pick something up with my hands such as toast or a sandwich it can be quite an adventure chasing food around the plate as I struggle to find a way to get my fingers to hold on to it. Consequently meal times are taking longer and leaving me worn out. I should also add however that there are times when my hands prove too troublesome to waste much energy on and in these cases my carers will pick the food up and pass it too me. At lunchtime when there is no one around I have had to start asking for my lunch to be left on the table under cling film as after several near misses and one actual drop I was getting to the stage of not being able to reach into the fridge/freezer and get the plate out.

And in the bathroom just about every task related to personal care from shaving & washing to trimming nails & brushing teeth, and things that I won’t even go into here, are to varying degrees becoming ever more difficult. Some of these are borderline now and I’ve just started asking for help with them.

I’m slowly loosing the ability to write with a pen and paper. The precision motor control required to hold a pen and form the characters is slipping away. Just putting a few short words together in a greetings card and on the envelope is about my limit and even that is with repeated breaks. My handwriting is starting to resemble a dead spider dragged across the page. How long I wonder before I cannot even write my own name? Thank goodness then for computers which are increasingly become essential and central to my life and my ability to organise it, but sad too that all my physical abilities are being condensed down to pushing buttons. But even my typing speed is much slower these days. It’s very frustrating to have my mind race ahead of my ability to hit the keys.

Fatigue is something else that is making itself increasingly felt. I only have to do a little physical activity and I am feeling tired and worn out. An example of that is in the morning after I have expended energy freshening up, dressing and eating, I will then feel the need to sit down on the sofa and rest for a while before I start the day. Half way through the afternoon and I’m feeling tired again and so take another rest on the sofa. I’m also finding that my walking distance is diminishing and about 20 minutes without a rest is about my limit these days and even then I can feel that my breathing is laboured. My energy reserves are very low. Perhaps it’s no surprise then when I say how much I look forward to bedtime these days. It’s one of the few times when I can truly relax.

I’ve started to get aches and pains around the shoulder girdle. No surprise really I suppose as I only have to look in a mirror to see how far my shoulders have dropped. When I’m walking around with my arms hanging limply by my side it can feel like they’re about to fall out of the sockets! It’s a very uncomfortable feeling. Also of concern is the fact that my arms are so rigid and unresponsive that should I ever take a fall then I would fall like a felled tree. I would not be able to raise my arms to protect my face (as I know only too well from last year’s bicycle accident. By the end of the day my neck can ache quite badly. I suspect that some of this may be down to posture and sitting at a computer for too many hours a day. Occasionally I suffer from cramp in my feet as well. I had an episode of this a few weeks ago when lying in bed. It started in the toes of my right foot (causing them to curl up tight) then spread to the arch of the foot before moving to my left foot. It was quite painful and kept me awake. My ability to cough is growing weaker too. I’ve had a few choking instances at breakfast recently and not had much power to really cough or shift food that has become trapped. A portent of things to come?

I had intended to post this blog entry over the past weekend but then realised that it was Easter and because of the downbeat nature of this entry I decided to withhold it. Life really is starting to become quite difficult now and I’ve never felt so constantly tired in all my life. I keep trying to think of new ways of doing things for myself but I am gradually running out of ideas. I’m starting to think in terms of having a certain energy budget to spend each day. I have to give careful thought now on how best to spend that energy to ensure I get the best return. I’m therefore really grateful that I have a good team of carers looking after me because to be honest I am now past the point where I could ever completely look after myself and the scales are slowly but surely shifting towards a life of dependence.

Mark

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2 Responses to The downward spiral

  1. Ziggy Rizz says:

    Hiya Mark, wish there was something that I could say but I don’t think that there is anything adequate or right. You just take care of yourself over there and keep the mind going, where ever it takes you. Ziggs x

  2. jane c says:

    Hi Mark,

    Sounds like you’re having a bit of a rough time of it and I know only too well where you’re coming from – there seems to be point with this bugger of a disease where you suddenly “tip over the edge” and total dependence on others is staring you in the face.

    Few tips though for the stage you’re at now –

    1) ask your OT for a mobile arm support, Richard absolutely loved his, the feeling of weightlessness it gave his arm and it allowed him to feed himself for a while longer. He also had a sort of pointer gadget made that I could put on the end of the arm which allowed him to tap his computer keyboard (albeit one letter at a time!) but it did allow him to USE his right arm long after he lost the ability to LIFT it, provided there was someone around (eg.carer) to put his arm into the support. It can take a while so you need to request it NOW!

    2) Consider using a riser recliner (available free of charge from MNDA Equipment Loan Service and fitted to your individual measurements) – the chair is very padded so Richard found it more comfortable for his protruding shoulder bones. Also, as he lost the ability to stand up/roll over in bed, he actually slept in the chair as well for the last 11 months of his life as it supported his legs and arms so much better than a bed (even his profiling bed) did and he was able to get the chair to rise him into a standing position rather than being hauled uncomfortably around on a bed.

    3) Talk to your dietician (I don’t know whether you’ve had a PEG feeding tube fitted) about Calogen milkshakes, Richard used these as a good way of supplementing his diet when he started to lose too much weight. He lost the ability to eat quite early on because he had bulbar onset ALS, so he had neutral flavour through his PEG tube, but I gather they come in nicer flavours if you can still drink orally!

    Hope I’m not just stating stuff you already know about – we found it useful when other people told us tips and techniques, so would rather risk repeating it than you maybe not finding out about them at all.

    Cheers, Jane

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