Out of reach

I stare up in frustration at the magazine perched on the shelf so tantalisingly close and yet so far out of reach. It might as well be on the other side of the world for all the difference it would make. Shopping like so many activities that form part of our normal everyday rituals has become something fraught with frustration as my upper limbs gradually succumb to the disease. Until fairly recently I would think nothing of raising an arm up to pick a book or a magazine off a shelf but now these tasks are beyond me and I’m either faced with having to continually ask people for help or just go without. Browsing is now becoming a thing of the past because it is just too much effort to keep asking people to pass something to me and then ask them to put it back if I’m not happy with it. It has given me a whole new appreciation of what it must be like if you are not very tall – how everything must seem so far out of reach because the world is designed to work best for people of average height and abilities. It is only when we don’t have or loose these attributes that we realise how ill equipped we are to deal with the world the way it is.

I was in a gift card shop recently looking for a birthday card. After scanning along the racks I realised that only about a third of the cards were accessible to me so straight away my choices were limited. The same thing is true when I go shopping for clothes. I find that quite often the racks are now at a height that prevents me from lifting the clothes hangers off the rack or even if I did manage to, knowing full well that it would be even harder to put them back. Part of the problem is an inability to move my arms far from my body, but coupled with that is the problem of muscle atrophy which means that as I steadily loose muscle bulk my strength fades away. I therefore have to be very careful what I take down from a shelf or risk dropping it as my arms are starting to become unpredictable in their ability to support a weight.

I often make a joke of the fact that because I am sometimes better at taking things down from a shelf then putting them back (especially books because they feel quite heavy to me now) it would be easy for someone to trace my steps through the town centre. All they would need to do is just follow the little pile of goods neatly piled on the floor by the shelves I’ve been browsing…just like a breadcrumb trail :-).

But it isn’t just stretching up but reaching out that causes problems. Until a few months ago when I reluctantly had to give up getting my own grocery shopping I would find it to be a real effort stretching across freezer cabinets to reach items stacked on the shelves at the back. And holding my arms out whilst reading a magazine is no longer possible because the strength has faded to such a degree that I need to crouch down in a newsagents when browsing a magazine so that I can rest it on my knees.

And of course the problems aren’t confined to shopping trips either. Most of the stretching and reaching actions are performed around the home. A simple task like hanging the washing out is now beyond me as I can neither pull the plastic sheath off the rotary line arms (which requires a lifting action) or raise the centre column to erect it (which requires strength) – and all that is before I even think about reaching up to peg the laundry on the line. The last time I was able to do this was last August so now clothes are dried indoors. And the list goes on of course. Just think of all the normal everyday activities we do without a single thought: reaching into a tall fridge/freezer, opening kitchen cupboards above work surfaces, reaching into a bathroom cabinet or standing by the kitchen sink and stretching over to operate the taps which now seem too far away from my body and require me to lean forward. Slowly I am becoming unable to interact with my own home.

A few weeks ago a light bulb blew on the landing at the top of the stairs and I was powerless to reach up and change it. I had to wait until someone called round to change it for me later in the day. I felt so helpless watching them effortlessly raise their arms up and replace the old bulb. It wasn’t so very long ago when I would have done the same but now all I can do is look on in frustration.

Personal care is another area that is increasingly becoming a challenge: washing and combing hair require me to crouch down lower into positions that help reduce the travel distance for my arms. Showering is made difficult by arms that are loosing their flexibility and thus their ability to reach into areas behind me. Pulling a jumper over my head requires me to either bend over the bed so I can drag it along the surface of the bed or bend down low to the floor. And so on…

Of course some of these tasks can be made simpler with the appropriate disability aid and I’ve started to take advantage of these as the need arises. For instance I’ve just bought (in my local Keep Able disability shop) a long reach bath sponge – basically a soft sponge on a long flexible plastic arm which is designed to make it easier to clean your back when you have limited flexibility in your arms. Adult Services (formally Social Services) have also kindly provided me with a one-step platform that I can kick around the kitchen floor which has given me another six inches of height – very useful when performing just about any activity around the kitchen that would normally require me to bend my arms (a function which is becoming increasingly difficult due to muscle stiffness).

Despite what seem to be trivial tasks to most other people all of these upper limb actions quickly wear me out as I am constantly fighting against muscles that don’t seem to want to move anymore and are growing progressively stiffer. It is a consequence of the upper motor neurones (literally up there in the brain) failing and it’s called spasticity. It’s when there is increased resistance by the muscle against normal movement. My experience of this has been steadily increasing over the months as my brain is gradually loosing the ability to ‘talk’ or send signals to certain muscle groups. Even now, right this minute, if I try to stretch my right arm outwards as if to take hold of the computer mouse I can feel this invisible force holding me back, keeping my arm close to the body. The more energy I pour into the effort the more it seems to resist. In the end other muscle groups come into play as my body compensates by moving forwards instead. But it is a most uncomfortable sensation fighting against muscles that refuse to ‘loosen up’ and to be honest quite scary at times if I stop to think about the paralysis that is slowly creeping forward. So I try not to think about it!!

One way in which I cope with reaching up to things and which I am increasingly depending on is momentum. Instead of gradually lifting an arm in a controlled movement which has become impossible for me I now rely on swinging motions to build up the energy to ‘leap towards’ a surface and then use the fingers to grasp. Sometimes I miss my target or underestimate the ‘swing’ needed which may require me to ‘finger walk’ the rest of the distance. Nevertheless it seems to work reasonably well at the moment although I do fear that I am turning into some bizarre form of windmill.

So momentum is what helps me to continue to reach out for things (although once my hand has reached something then strength or a lack of it becomes a deciding factor on whether or not I’ll actually be able to lift the item). An indirect consequence of all these baboon-like swinging motions is that they help maintain a level of flexibility and suppleness in the muscle tissue. Some months ago my community physiotherapist showed me how to perform a few simple arm movements that would help stave off the stiffness brought about by not using my arms properly and just letting them hang limply by my side. So now each day as I lay in bed I struggle to clasp my hands together behind my head and hold them there for long periods of time. Initially the muscles always feel stiff but after a while I can feel them loosening up. Similar exercises can be performed by sitting at a dining table and leaning forward with the arms stretched out before me. In both these examples I’ve given it is important to realise that they are not performed in such a way as to make you fight gravity. So in other words they are not performed standing up as this would no longer be possible for me. None of these exercises will return the strength I’ve lost, that is impossible because the muscles are wasting away. But by keeping what muscle tissue I have left as supple as possible will at least give me some flexibility so tasks like dressing can be made easier. It should also help prevent cramp.

Posture also has a direct bearing on how far I can move my arms. For instance if I am standing up I have a greater range of movement then when sitting down when my left arm in particular is almost immobilised and the only movement comes from my shoulder raising up to compensate for the lack of movement in my arm. And lying in a horizontal position such as in bed means that I have great difficulty moving my arms up as if to push back the duvet. In fact for moving around in bed I now depend more and more on legs and torso muscles to compensate.

With MND it is common to have the symptoms asymmetrically to start with. My left arm continues to weaken to a greater extent then my right arm (although that too is a lot worse then when I was diagnosed). Consequently tasks that require a coordinated effort between left and right arms such as eating a meal are becoming extremely difficult. In fact I now have to rest my left arm against the edge of the table whilst pivoting it and bringing my head down to reach the food. So mealtimes are ‘interesting’ and a bit uncomfortable in the presence of others. I’m due to have an assessment soon for a mobile arm support. We’ll see how that improves things. In the meantime I fight a never ending battle against an encroaching paralysis that continues to restrict the movement of my arms and one day much more…

And gradually with each passing week the world slips further…out of reach.

Mark

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