Nigel, MND and me. 8: Disco legs

The bag of death sits in the kitchen cupboard, waiting patiently for its moment.  It’s been there for quite some time and may very well be nudging its use by date.  Presumably, a new assortment of injectable drugs designed to relieve end-of-life torment would be prescribed, should Nigel happen to survive beyond the stated date. 

‘It’s a good idea to have them in the house,’ says the Hospice nurse, ‘so you’re ready.  Especially as there's a bank holiday coming up.’

Will he not make it past Monday?

This is just one of the recommended boy-scout, be prepared, strategies that we have adopted to ensure that Nigel’s ultimate demise is as he would wish.

Others include the Do not Resuscitate directive and Advanced Care Plan declaring that Nigel will not receive treatment or medication merely for the purpose of prolonging life.  He does not want to be taken to hospital, nor does he wish to be revived.  These instructions, folded inside a white plastic container sporting a green cross, are housed, weirdly, in the fridge.   Everybody’s got a fridge apparently and, therefore, attending medical professionals would know where to look.  As ours is an integrated appliance merging seamlessly with all the other gorgeous new cupboards I am supposed to mark its identity by sticking a green cross on the outside of it.  To hell with that.  There are limits.

Thankfully, not every be-prepared strategy is about Nigel’s departure from this world.  One, at least, has the sole intention of enabling him to remain in it a tad longer. 

The fitting of a gastrostomy tube is a relatively simple, but ghastly procedure, and one, we learn, best undertaken whilst the person is still strong enough to endure it.  In anticipation of Nigel losing the ability to swallow, and not wishing to suffer the agony of death by starvation, the operation has been performed, and Nigel now shows off this floppy protrusion from his stomach like you would a tattoo.

There is also the small matter of preparing our home for Nigel’s increasing disability.

At one time regarded as merely the place to which we return after work and play, it is now where we spend almost all of our long and largely uneventful days.

‘Wait ‘til I’m dead,’ Nigel says, when I nag that we should redecorate the lounge. 

Not a chance.   We should make our home as beautiful and as comfortable as we can whilst we’re living, I argue.

The battle is won.  The lounge has had a complete makeover.  The TV, once a silent anathema in the corner watched only on a Sunday (not because we were observing some peculiar religious practice - Sunday used to be the only night we were actually in), is now a friend, that even gets to air day-time programmes such as ‘Homes under the Hammer!’  It has truly earned its place on the wall within its exquisite setting.

Obviously the specially adapted bathroom is a must, but shouldn’t we also consider the longed-for, begged-for-for years brand new dream kitchen while we’re at it?

Well why not?

Won that battle too.

It is amazing how utterly absorbing the choosing of a kitchen sink can be.  Not to mention the frenetic consideration required regarding the tap that adorns it, the island within which it sits, the design, style and arrangement of the cupboards surrounding it and ultimately the walls - ideally awash with an arresting hue – all uniting in their depiction of a unique and complementary creation, wherein all manner of culinary delights are cooked up.

Add to this the problematic picking of ultra-posh porcelain to enable a fully equipped disabled wet-room and a ludicrously indulgent bathroom to be housed in the rapidly progressing extension that awaits, with high expectation, the outcome of my decisions, and you would be forgiven for assuming that the woman buried beneath a bundle of bathroom and kitchen magazines, has finally lost the plot.

So how is it that, despite months of agonising deliberation, now that the kitchen sink is fitted and working, I don’t actually like it?

Ah well.   Maybe it’s a girl thing.

Or perhaps, this preoccupation with all things inconsequential is infinitely preferable to focusing on the unrelenting weakening of Nigel’s limbs.

Fasciculations, or muscle twitches, are a common symptom of MND.  There is not an instant when Nigel is free of this. 

At its best, Nigel’s impression is of a kaleidoscope of butterflies trapped beneath his skin.  When I place my hand on the area I can feel the gentle fluttering but can’t see it.  Sometimes the legs are affected, sometimes the shoulders, chest, back or arms.   Often he can feel it in his face and neck, and even his tongue.

At its worst, this manifestation is profoundly disturbing, both physically and emotionally.   Nigel’s skin becomes the mesh restraining a nest of serpents swirling riotously in an alien sea.  The raging ripples are visible and merciless – almost mocking in their intensity.

‘Look at us,’ they seem to say, ‘we’re coming to get you.  These legs won’t work much longer mate.’

The crashing waves surrender to cramps – and with them comes the pain.  Nigel’s legs can spasm in painful convulsions for up to an hour.  There is little anyone can do.   If he wants to be held, I hold him.  If he needs space, I stand back, watching helplessly, unable to do anything to stop it.

‘You’ve got your disco legs on again, Dad’ says Becky, shining a welcome ray of light into the darkness.

A wry, but grateful smile is her reward.

But there will be no more discos for Nigel.

Nigel has always been the robust, physical type, accustomed to being in control.   Born in an era still regarded as the domain of men, Nigel clambered and clattered his way through childhood combining cheek with an equal amount of charm.  His good looks, confidence and remarkable maturity swept him smartly through adolescence - not for him the acne-ridden, gormless and gangly youth.  He was popular and sociable - a good mate.   He never had cause to be a bully, but was certainly drawn to be a battler – experience that came in handy those years in the Army, when his inherent courage served him well.   With the exception of a bullet and possibly the Police, Nigel has never run away from anything in his life.

Whilst definitely not professing to represent the alpha male, he is entirely comfortable when immersed in typically male pursuits.  Playing and watching rugby; enjoying a round of golf prior to a couple of hours in the 19^th; downing a few pints in the pub and happily undertaking years of back-breaking graft to carve a successful career in the construction game – all sit well with him.  He is made that way.   Of course, he has a softer, romantic, loving side, but fundamentally, Nigel is a big, bold, brash bloke.

As Nigel’s body fails him, an ominous vulnerability is emerging. 

The odd stumble and a distinct difference in strength, or rather, lack of strength, in Nigel’s left leg is addressed, for a little while, with the aid of a stick.   Being a stylish fellow, his elegant canes are soon a talking point at the pub.  Of the snake, crown and golf club heads sitting proudly atop the polished canes, the crown seems the favourite.  Lending, as you might expect, a touch of majesty.

Sadly, his fine collection of walking sticks is now consigned to the stand in the porch and Nigel has no choice but to accept the aid of a walker.   It helps for a time.  Until …

I hear the slow drag of Nigel’s feet as he battles his way along the corridor.   He steers the walker in sharp, faltering jerks.   Each ragged breath a painful rasp, each sluggish step a struggle.   His arms tremble as he grips the handles.   His shoulders shudder with the strain.  The lounge seems such a long way off.  He’s not going to make it.  He’ll fall.  His customary self-assurance dwindles as he fights with every quivering nerve and sinew in his treacherous body to haul one foot in front of the other.

It’s time for a wheelchair.

The alarming fragility that now engulfs Nigel is provoking within him spells of severe anxiety and sensations of panic that are completely foreign to him. 

The intuitive ‘fight or flight’ response to peril has never been far from Nigel’s consciousness.  Throughout his life he has had an acute awareness of potential threat.   It's in his nature.  In the face of danger, he has been able to make the life-saving decision to fight or to flee.

Now, he can do neither.