MND, Nigel and me. 11. Who Cares ...?

Nigel is shaved, showered, dressed, breakfasted and settled in the riser-recliner almost before he’s opened his eyes.   Barely awake, I mercilessly deprive him of his comfortable bed and barge through his morning routine like a buffalo on speed. 

‘What if we don’t like her?’ I rant, twitching expectantly at the curtains.  ‘What do we say?  “Sorry you’re not suitable … can’t think of a good reason, just don’t like your face…?”’

‘Let’s just meet her, eh?’ says Nigel, the embodiment of calm and reassuring reason.

‘Ok, ok.  But don’t say you like her if you don’t.  It doesn’t matter why:  boring; crazy; wart on her nose; two heads; weird walk.   Anything.  Cuppa?’

In the kitchen, the scarcely challenging task of tea and coffee preparation fails to free me from anxiety.

For God’s sake Julie, get a grip.   So long as her breath doesn’t stink like a drain, she is neither infuriatingly drop-dead gorgeous nor terrifyingly ugly – so long as she’s genuinely caring and good at the job, what does it matter? 

But it’s a big deal isn’t it?  Nigel’s first ever carer?  We’ve managed by ourselves for six years, but now we need a little help.  Not much – don’t want much – a mere three hours a week to start with.  Now that Nigel’s needs are such that he can’t be left alone for even a minute, those three hours will mean that I can revel in the thrill of a trip to the supermarket, or get pampered at the hairdressers – no - my hairdresser doesn’t pamper.  That’s why I like her.

Actually … maybe the carer should do the shopping and spare me from the supermarket?

‘You don’t realise how much care you actually need until you start with it,’ somebody from the Hospice said. 

Well, we will see.

For the hundredth time I check the training programme – the ghost of a college Quality Manager still lurks somewhere deep within me and, though some might consider it OTT, it seems perfectly natural to me to prepare a file with essential bullet points and colour-coded hand outs for reference.   At least I refrain from setting some kind of test.

Yes, it’s all there: medication chart with administration times and doses; Nigel’s likes and dislikes; the dos and don’ts in his routine; how many sugars in his tea; the spoon – not just any spoon - the particular spoon that must be used when feeding him his breakfast; indeed, what he eats for breakfast; the wealth of equipment – what it is, where it is, when it’s used, how it’s cleaned, how …

Come to think of it, I possibly have gone over the top …

The doorbell rings.  It’s her!

Of course there is no need to worry.  Within minutes Nigel has discovered that his first carer, Julie, is a fellow Bradfordian.  There follows a debate on which one of them can claim to have hailed from its roughest estate (I believe Nigel is the victor) then an update on the current ‘no-go’ areas and finally a crawl round the pubs and clubs of Nigel’s youth.

When Julie proposes that she gets on with the ‘caring,’ I meekly explain that, much like tidying up before the cleaner arrives, it is already done.    

‘But look!’ I enthuse, seeking the security of my comfort zone, ‘let me show you the file …’

Within weeks of Julie starting it becomes clear that it is impossible for me to stuff every possible ‘out-of–the-house’ activity into three short hours and the wise old owl from the Hospice is proved right. 

One carer becomes two, the hours increase from three, to six, to twelve, to forty - until we reach the point where Nigel has been living with MND for ten years.   

Now we have an established team of six carers, covering almost twenty-four hours a day. 

Apart from the afternoons.   The afternoons are ours.

Nigel’s disease progresses along a path featuring a series of plateaus and dips.  There is no telling how long it will rest on a particular plateau or how deep each dip will prove to be.  Invariably, Nigel emerges from the devastating depths beaten and bruised by the internal battering that rages within his already broken body. 

He is significantly weaker and increasingly disabled but, worse, somewhere deep in the bowels of the latest pit, his unconquerable spirit suffers a savage and vicious assault and some of its sparkle starts, so slowly it’s barely noticeable, to bleed, unchecked, from this new wound.      

The strain of trying to cope with each new plateau can be too much for both of us and our ragged emotions, intolerance, tetchiness and short tempers, trigger the cry for additional care. 

The fretful ‘will we like her/him’ scene is re-enacted every time a new carer joins the team. 

On their first day, whether young, worried and untested, or mature, vastly experienced and positively oozing confidence, or indeed, if the new carer just happens to be our daughter Ellie, Nigel greets each one of them with his customary charm and gallant, gregarious gusto, putting them instantly at ease by declaring:

‘Don’t laugh at my cock!’

Which, of course, ensures that that is exactly what they do.

In the early days, I am much more uncomfortable with the imposition wrought by the need for care than Nigel, and unreasonably reluctant to let go.  I feel needlessly concerned about Nigel’s loss of dignity, of others attending to his personal needs.

Am I simply fearful of having my nose pushed out?

Or am I afraid of losing him?

Suddenly there seems to me to be a gap between us that wasn’t there before.  I can hear someone else’s laughter coming from Nigel’s bathroom instead of mine.   I feel like a visitor in my own home.

Nigel embraces this latest intrusion into our lives with his usual tacit acceptance.   For him, life has become much more interesting.  He has new friends, stimulating new stories to listen to, different questions to ask and a fresh audience for his jokes.

Even though I know, and Nigel knows, that we not only need help, but also a break from one another, I’m apprehensive about taking a step back, of letting go.

When, at Nigel’s insistence I go on holiday with Paula and Tom – the first time I’ve ever been away without him – it is an immense relief to leave the grim spectre of death behind.   However, stemming perchance from my catholic roots, guilt jumps in the bag in its place.  The guilt lodges in my throat and sours the taste of food and wine; it burrows behind my eyes and smudges away the splendour from the sights and it expels the excited butterflies from my belly to nourish instead the nervous nausea.

But it passes. 

Anxiety wanes.

Our carers become our friends.   They are part of the family.  As such, they experience the ups and downs of our lives.

They cheerfully share with us abundant bouts of laughter and kindly offer comfort during times of sadness.   Occasionally they will agree to partake of a rather fine whiskey with Nigel and indulge in small glass of wine with me. 

We can trust them completely to keep it together, to manage Nigel’s care and well being, when members of our insane family decide to hold an impromptu disco, prancing and pirouetting around Nigel’s bed until four in the morning, in what he has dubbed his ‘West Wing’.    

The unlucky carer on the night shift attempts to keep the entire sorry lot of us safe and assists, without complaint, in the aftermath of such raves by happily sweeping up shards of shattered glass and scraping the odd drunken carcass off the kitchen floor.  

Their tact and discretion is undeniable.  Not one of them would dream of reminding any of us what idiots we made of ourselves the night before and they are all extraordinarily accomplished at becoming invisible when Nigel and I are having one of our little spats.

Their professionalism and skill ensures that the care for Nigel is both compassionate and dignified and, most of the time – a great deal of fun.   Laughter looms large in our house. 

There is no doubt that our carers have done much to enhance the quality of Nigel’s life and as for me, their influence on the retention of my sanity is substantial.

Whilst it is true that once I was the only one who could shower Nigel correctly, I am now the only who can’t.

I do, however, retain a certain title.  A title Nigel bestowed on me a long time ago. 

Despite many attempts by others to topple me from my podium, I remain the supreme and undisputed champion when the delicate arrangement of Nigel’s genitalia is required.

The worthy designation of ‘top bollock adjuster’ will be forever mine.

Nigel, MND and Me. 10: Magnificent deaths

You’re back. 

I’d almost forgotten.   How stupid of me.  How could I?   

From my huge, empty and solitary bed, I watch him sleep. 

His new bed and air mattress, a medical profiling bed that allows him to change position at the touch of a button, seems, at last, to be affording him some comfort.

But once again, despite the drugs, his night was long, agitated and disturbed.   

Much like a mother tending her sick child I let him rest.  

Perhaps a little longer will mean he doesn’t wake with another of those awful headaches.

The headaches are a recent development.   I’ve never known Nigel have a headache, even after eight pints the previous night.   Now, every morning is marred by nagging, inexplicable pain that lingers until lunch. 

You will spoil everything.

We’re settled now.  We have a routine.  Procedures are in place.   This plateau where Nigel’s disease has been parked for quite some time is familiar and manageable.

We are in control of this life of ours and know exactly what to do: medication first thing; give Nigel a shower; enjoy a leisurely breakfast before accepting the challenge of the Yorkshire Post’s quick and cryptic crosswords without resorting to the dictionary or Google.  

Craig calls for a cuppa, Les might pop in.  We could even get to see Ellie and Becky now they live just an hour away.  I clean an already clean house and generally make a drama out of sorting something.  I sort stuff.  Last week it was the garage, this week it’s the kitchen, next week it will be the bedrooms.  Nigel easily loses a few hours playing on-line poker and catching up with his Facebook friends.   

We’re fine.  Happy, even.

When the sun chooses to shine, and sometimes it does, we wander along the Esplanade, sit and look at the sea, revel in the warmth.   But mostly, we watch a bit of television and invariably enjoy a little snooze.

Now accustomed to the mundane, we no longer miss the madness.   Everything we need to get through our unhurried, humdrum day we have to hand.  Every piece of kit you could imagine from cups with straws, to ceiling hoists to wash-and-dry-your-bum toilet.  We have it all.

We’re doing okay.   Mogging on.

But now, you’re back.

Here you sit at the end of Nigel’s bed, a decaying phantom, spewing your scorn, slowly drumming time with those withered, skeletal fingers.

 Tap. Tap. Tap. 

Watching.  Waiting.

Must you smirk? 

Don’t touch him.  Don’t lay that putrid hand on his sleeping face.  You can’t have him.  Not yet.

We’re not ready for you. 

The unremarkable façade of St James’ (Jimmy’s) hospital in Leeds appears unexpectedly in the midst of a maze of small, equally unremarkable terraced houses.  Pulling into the car park I defer, grudgingly, to the sat nav.   It was right after all.  I had envisaged a somewhat grander approach and a more imposing exterior for such a famous institution. 

 Ah well, don’t judge a book and all that.

We arrive at the Respiratory Unit in good time, prepared for a wait.  The letter had said to allow three hours for the appointment.   

Oh no, I think, hearing the television in the waiting area before we see it.   As Nigel manoeuvres into position at the end of a row of seats, I take one of the mandatory green hospital chairs beside him and try not to look at the TV.   Not sure how long I can contend with the insufferable Jeremy Kyle, spouting with that pompous exasperation of the intrinsically virtuous, as he belittles those hapless, track-suit wearing, one brain cell apiece, cretins, who would willingly part with a kidney for five minutes of fame.

Yet another hospital, I think, ignoring the television as I mentally count the hours we have spent in such surroundings.  Pink and green as always - a splash of baby blue detracting not at all from the array of impractical, insipid colours.   Sighing, I think back to our previous hospital appointment in Sheffield – the completion of the trial.   The lithium had absolutely no impact on MND.   Sadly, Nigel never did make it to the end of the trial on his feet.   My God, that wheelchair took some pushing up those ramps in that car park!   There must have been a lift somewhere, just needed one iota of patience to look for it.

Thankfully, my random recollections are interrupted, and we are called away just as a preposterous rant about somebody’s boyfriend having eaten her mother’s dog gets underway.

‘Hiya, I’m Leanne,’ says a vivacious nurse with a blonde bob and a bright smile, her West Yorkshire accent evoking memories of my youth.  ‘Come wi’ me will yer?’

We follow, obediently, although we’re supposed to be seeing a Doctor Edwards.

‘I’m just gonna do some tests before you see the doctor,’ says Leanne, explaining before we even need to ask.

‘Where’re you from?’ asks Nigel, probably placing the accent within eight miles.  Surprisingly easy to do in fact – the distinction between the twang of nearby towns such as Halifax, Cleckheaton and Huddersfield are significant.

‘’alifax,’ she responds sunnily.’

‘My home town.’ I say heartily.

‘Thought so,’ says Nigel.  ‘You can guarantee a good night out in Halifax.   Always end up battling though.  Usually with the bouncers.  Especially in Clarence’s.’ 

‘Yeah?  That shut down yonks since,’ says Leanne.

‘I’m not surprised.  There was this particular night, me and our kid … ‘

Setting off on a personal stroll down memory lane, Nigel starts to chuckle.  We won’t get to hear the rest of the story.  Once he starts, he can’t stop. 

Leanne, now a big fan, attaches a small peg-like device on Nigel’s ear and then quickly hooks him up to an innocuous looking machine that demands no more of him than a couple of minutes of breathing in and out.   Given the antics going on inside his head, it takes more than ten.

Next he is required to blow with all his might into some other gadget – not an arduous task under normal circumstances, but next to impossible when consumed by laughter.

I am mightily tempted to slap him round the head, but I know from experience that this will only make him worse.

Eventually, her persistence rewarded, she has all she needs.

‘I wish they were all like you,’ she smiles, and sends us back to wait.  ‘I’ll get the results to the doctor.  He’ll not be long,’

I hope Mr Kyle has dealt with the dog drama and buggered off.  Ah, ‘Heir Hunters.’   Could be worse.

Before I become too concerned about Gladys Ethelberg’s fortune being consigned forever to the government’s coffers, the lovely Leanne reappears to take us to Doctor Edwards.   Happily, cousin Cyril is discovered just as we vacate the waiting area.

In comparison to Doctor Edwards, the animated Leanne appears lethargic. Exuberance positively bursts from him, spilling over every inch of his tiny office.   An ostensibly huge, but actually average built man, he dominates with the power of his personality.    Instantly likeable, with a booming voice, infectious smile and no-nonsense manner, he grasps Nigel’s hand and shakes it with enthusiastic vigour.  

In the time it takes for Nigel to negotiate the small space, we indulge in a little light chit-chat, bemoan the weather, berate the traffic, declare that we found the place all right, though not quite believing the sat nav, and decline the unusual offer of a cuppa.  

‘I must say you look exceptionally well!’ says Doctor Edwards, directing his bark towards Nigel.

 ‘I know I do.  I am.  Apart from MND.’

‘Of course,’ acknowledges the doctor, having no difficulty at all in understanding Nigel’s speech. 

‘Which is why you’re here,’ he goes on, barely pausing for breath. 

‘You’ve been suffering from headaches I understand?’ he says, peering at Nigel over the rimless specs that are perched on his nose.

‘Yes.’

‘Well, as I suspected they would be,’ he says, waving the papers that presumably hold the outcome of the tests, ‘the results are abnormal.’

‘Oh,’ says Nigel.

‘Yes.  You see, MND has started to affect your breathing muscles.   It’s very common.  Inevitable actually.  Your carbon dioxide levels are askew.’   

Matter of fact.  Business like. 

‘Hence the headaches.’

We’re both alarmed.  Perplexed.

‘I can understand why you seem surprised by this,’ went on Doctor Edwards, reading our faces,  ‘most people expect breathlessness to be the only sign of respiratory problems, but headaches are a classic symptom.’

I glance at Nigel.  His face is impassive.  The laughter, ceased.

Breathing.   That’s pretty vital.

‘But look at you!’ bellows the doctor, standing up from his chair and coming round to stand next to Nigel.  He pats him manfully on the shoulder, ‘you’re doing brilliantly,’ he continues reassuringly, ‘for someone with MND you’re unusually strong.  My God I wouldn’t bet on my chances in an arm wrestle with you!’

We laugh.  Like you do.

‘We can help with your breathing.   We’ll set you up with a non-invasive ventilator – affectionately known as a NIPPY - which I suggest you start using for a few hours overnight, increasing a little every week.’

He might just as well have been speaking Russian.  He sees the total incomprehension on my face. 

‘Don’t worry, we’ll make sure you have the training before you go and you can take it home with you today.’

The three-hour appointment now makes sense.

Doctor Edwards returns to his seat behind the desk, leans forward on his forearms and adopts, what I imagine, is, for him, an unusually serious expression.

‘Now, I do have to tell you that not everybody can get along with the NIPPY.  It does take a little getting used to but I do recommend you persevere.  If you use it, it will prolong life.  If you don’t, it won’t.  And your life will be shorter.’

I expect a pause, to allow this information to sink in, but suddenly, Nigel says,

‘How will I die?’

It’s now the doctor’s turn to look surprised.

 ‘I’m worried about choking,’ explains Nigel, helpfully.

Until this moment I had absolutely no idea that Nigel was concerned about the manner of his death.

Doctor Edwards leans back in his chair, spreads his arms wide as if to embrace and carry us, with the confidence of one who has all the answers, along the road to enlightenment. 

‘My fine fellow,’ he bellows.  ‘I have seen some magnificent deaths from MND.  Magnificent!  Not one MND sufferer that I know about has ever died from choking.   Let me put your mind at rest.  It won’t happen like that.’

‘How then?’ asks Nigel, uncommonly insistent.

‘Failure of the breathing muscles, generally.  However, many deaths result from a chest infection such as pneumonia, but let me assure you these deaths are exceptionally peaceful and controlled.  Because we know what to expect and when, we are rarely taken by surprise.  I have to tell you Mr Casson, in many ways, you are extremely lucky…’

I can’t help but raise my eyebrows a touch.

‘… For example,’ he bawls, ‘there will be some amongst your family and friends, perhaps more than one or two, who are worrying about you, who will quite probably die before you.  They have no idea it’s coming.  You, on the other hand, can prepare.  Make provision.   Say goodbye to your family.   This is denied so many.

Well, if you put it like that.

‘And, furthermore, you know that your death will be painless because we make sure of it.

‘You make sure of it?’

‘Absolutely.  When the time comes, we will make you comfortable.’

Nigel seems reassured.  ‘Thank you,’ he says, smiling now, ‘you have made me feel a lot better.

‘You’re welcome,’ he beams,  ‘now, off you go and get your NIPPY.  And don’t forget, persevere!  It’s your friend!’

Our new friend sits on the table next to Nigel’s bed occupying the space where the wardrobes once stood.  The tubes are attached, the ‘breath in’, ‘pause’, ‘breath out’ settings all determined and fixed by our trainer at ‘Jimmy’s’ to alleviate Nigel’s current problems.   All I have to do is put the headpiece over Nigel’s head, make sure the nose pillow – cute name – is the right way up and sitting properly on his face, and turn the machine on.   No, turn the machine on first, and then put the headpiece on.   Might be worth checking the instruction manual again. 

Later that night I hoist Nigel carefully into bed.  He’s exhausted.  We both are.  It’s been quite a day.

Once lowered comfortably onto the mattress I fold the duvet around him, plump up his pillow and lift the sides of the bed.  Everything is in place and within his reach:  iPad clamped securely on the side to enable Nigel to entertain his Facebook friends; water in case he’s thirsty; extra tablets should he need them; sweets should he fancy a treat; tissues to capture the odd sneeze and the alarm, should the impossible occur and I don’t actually hear him call.  Just the NIPPY left.

I turn it on and move to fit the headpiece over his face.  Nigel reaches up and takes hold of my hand, stopping me from going any further.

He smiles, but the smile fails to flush the sadness from his tired eyes.

 ‘I started to die today,’ he says.

‘I know,’ I whisper.   

I place a soft and gentle kiss on his forehead.  And, as I do …

… the thing at the end of bed slowly grins.

Tap.  Tap.  Tap.

Nigel, MND and me. 9: Sentenced to the chair

The strident whine of the riser-recliner motor heralds that Nigel is on the move.   

‘Bathroom?’

He nods.

‘Excuse us,’ I say, placing my glass on the coffee table.  ‘Won’t be long.’ 

Not true, we’ll be an age.   No longer can anything be achieved quickly. 

‘Shall I wait until you get back?’ asks Mel, who holds us enthralled in the midst of an animated tale involving superglue and a lock.

‘God no! Carry on.’  This story is too riveting to impose a halt.  Chances are Mel will sweep us towards the spectacular crescendo before we’ve even left the room. 

‘So, when nobody was about and all was quiet … ‘

Paula obligingly refills glasses as, difficult as it is to concentrate when captivated by this fascinating fable, I slide the sling across Nigel’s back and beneath his legs.  Hopefully got it the right way up this time.   New at this, my manual handling skills are tentative and clumsy.   It looked so easy when the OT did it.

‘Can we help?’ ask Derek and Tom, almost in unison, the less than polished performance clearly a cause for concern.

‘No don’t worry.   It’s easier with one.’  Another untruth.   However, two people who don’t know what they are doing are twice as bad as one.

‘So what happened when the police arrived?’

‘Well …’

Grunting indelicately with the exertion, I maladroitly manoeuvre the mobile hoist towards what the kids have dubbed ‘Dad’s control centre.’

Captain Casson is pleased now that I didn’t wait until he was dead to refurbish the lounge.  He can command operations from his perfectly equipped post, sited with regimental precision so all essentials are within reach and from where he can oversee everything and everybody, without the bother and irritation of even turning his head. 

‘You’re joking!’

The chair, flanked by two side tables bearing the whole shebang of necessities such as man tissues, toothpicks, sweeties, medication, thermostat, fan, and an ever-present cup of tea, is on loan from the MND Association.  It is now one of the few places where Nigel feels comfortable and consequently, this is where he spends most of his day.

Just wish it wasn’t pink.  What is it with pink chairs?  Who the hell wants a pink chair?

‘And then … you won’t believe this …’

Avoiding the clamps that grip the edge of each table, the arm of one, holding his lap-top, the other, his iPad, and trying not to snag the wheels on the warren of wires that stretch like sleeping snakes towards their personal plug point in the den of extensions that litter the floor, I manage, at last, to get the thing parked and the sling attached.

‘Hurry up, I’m gonna piss meself!’  says Nigel, swelling the hilarity already present in the room, Mel’s sparkling saga having flounced fervently to its finale.

Agonisingly slowly, Nigel is lifted from the chair.

The laughter subsides.

Nigel hangs, suspended.   Dangling like a baby carried by a stork.    Defenceless.  Exposed.

Not long ago this man could swing swiftly and skilfully through scaffolding with the agility and athleticism of an ape.

Nobody speaks.

Somebody coughs.

Someone else sniffs.

An uncomfortable silence descends.

‘Does my bum look big in this?’

Raucous laughter erupts into the room, as Nigel’s perfectly timed one-liner tears through the tension bringing welcome relief to our grateful guests.

Good on yer, Nige.  Even now, as his condition worsens, his enduring sensitivity and unselfishness makes the rest of us feel better.

I lower Nigel into one of the four wheelchairs that form part of the ever-increasing catalogue of care kit that occupies space in our home.   The chairs have, or have had, their role to play in Nigel’s progressive disability.

This one, powered, compact and nippy, but not especially comfortable, is mainly used to ferry Nigel to and from the bathroom.   Having been provided by the wheelchair centre it would have been reasonable to expect the chap that demonstrated it not to shout at Nigel as if he was not only deaf but also stupid. I could only marvel at Nigel’s tolerance as he had the operational complexities of a joystick painstakingly explained to him.  Physical disability does not render a person retarded. 

Languishing unloved, banished to the gloomiest corner of the garage, covered in cobwebs and buried beneath junk, is the first and only manual wheelchair we ever bought.   With the confidence that springs from total ignorance we allowed this abomination of a carriage to accompany us on a long weekend to Brussels.   The chair is bewitched, compelled by demons to tumble into every pothole, fault and fissure – either that, or Brussels is the most wheelchair-unfriendly city in Europe. 

Or … perhaps my driving has something to do with it? 

Whatever the reason, this is when Nigel determined that his situation was indeed perilous. Subjected to the incompetence of others, however noble their intentions, is not something that he can bear.  The manual wheelchair has to go.

Apart from the fact that pushing a fourteen stone man up the slightest incline ensures half a stone of weight falls off you in a fortnight, I’m not at all sorry to see it exiled. 

A sporty, metallic blue, nifty little number also lives in the garage.  Bought mainly because of its boasting that it could effortlessly climb kerbs.  It lied.  Nevertheless, it has proved its worth by providing hours of fun as a serious contender in wheelchair races.   Sadly though, it has had its day and is now condemned to gather dust with its manual mate.  

All of which leads us to the ultimate in mobile chairs. 

‘I’m free!’ Nigel shrieks, hurtling down the lane on his way to the shop to buy a paper, as excited as a little kid dashing to spend his pocket money.   Perched atop his trusted steed – a shiny new, top of the range, can-do-just-about-anything wheelchair, he waves happily and heads off on a huge adventure.  

This chair can travel for fifteen miles; perform a perfect 360-degree turn on a tanner and assume numerous positions including a tilt and recline deep enough for sleeping.

Good as it is, further adaptations are necessary to meet Nigel’s exacting standards.  A made to measure upholstered winged back and headrest are commissioned along with two additional foam filled seats, four and six inches deep respectively.   

‘It cost more than our first house,’ says Nigel to absolutely everybody.  Proudly showing off his truly customised original lounge chair – a Queen Anne on wheels. 

For anyone unable to walk, a powered wheelchair is indeed liberating.  With the right equipment, disability need not be at all limiting.  

But MND is more than disability.  

As I watch him disappear round the corner, I smile at the degree of pleasure he will derive from this simple trip to the shop.  What am I saying?  He won’t just go to the shop.  If I know Nigel he will drive the chair up the steepest hill he can find to test how fast he can career down it.  When he’s conquered that he’ll see how sharply he can tackle corners without toppling.   He’ll drop it off the kerb into the road just to see if it gets back up.

He may very well head for the path alongside the golf course and playfully hail a former combatant to put him off his stroke.  He’ll think back to the day he got a hole-in-one on the par four, in spite of, or possibly because of, the hangover he was nursing. 

Possibly, he will head in completely the other direction, crossing the Spa Bridge into the centre of town.  His chair could very well earn its battle scars by engaging in a less than friendly joust with the myriad of menaces mounted on mobility scooters.   He might barge bullishly into stores, toppling tins, crashing into crockery and colliding into clothes.

He could even scurry to the Skate Park, riding the ramps before those trendy teens in a tantalising display of slick tricks and mighty moves. 

He’s bound to bump into old acquaintances and even encounter some new ones.  He’ll smile and share a joke, tell them his chair cost more than our first house, and add them to his ever-increasing circle of Facebook friends.  

If he comes across a gang of scaffolders erecting or dismantling a scaffold, he’ll laughingly tell them they’re doing it wrong.  They won’t be offended.  They’ll know him.  Every scaffolder does. 

He will do all this because he’s Nigel.   He will always be Nigel.   No matter what this disease does to him.

Bit by bit, MND will steal his body and ultimately, it will take his life.

But it will never quell the character in his bones, lure the laughter from his heart, or still the spirit in his soul.