Nigel, MND, and me. 2: Diagnosis

February 2007

This stunning renovation of a sixties three-bed suburban semi in Shipley fails to stun me.  I really couldn’t give a stuff.  Snapping the magazine shut I fling it on the table.  Could do with some stunning renovation round here, if you ask me.  Must every hospital reception area be confined to the colours pink and green?  Has there been some edict imposed on such establishments? 

For the last three months we have wilted in one wishy-washy waiting room after another.   The tired décor of this one stares back at me.  Pastel pink walls bearing badly hung pictures of white lilies, pale green carpet and impractical pink chairs rubbed grey by hundreds of backsides.  Even the lush umbrella plant in the corner can’t lift the insipid palate.  Makes you feel ill even if you’re not.  I would have expected better from a private hospital.  

‘How much longer do you think?’ I say, much louder than I need to.  I don’t care if the receptionist hears me.  She does.  The thirty-something attractive brunette behind the desk catches my eye and smiles, a pleasant, indulgent smile.  The kind of smile you plant on your face when trying to deter a toddler from having a tantrum. 

‘Mr Harrop won’t be long,’ she says.  ‘You’re next.  He knows you’re here.’ 

I smile back, ashamed.  If I had been the one behind the desk I would have shoved me to the bottom of the list.

‘Calm down, we’ve only just got here,’ says Nigel, ‘we’ll go into York after this and grab a bite.  I want to pick up the accounts from John’s, anyway.     And there’s a decent pub just near his office.’

Slightly mollified by the thought of lunch and a glass of wine I sit back in my pink chair and shut up.   I like York, so many great places to eat.  Nigel is using the time by sketching the scaffolding framework needed for the job he measured up on our way to the hospital.   We never go anywhere without pricing a job or two along the route.

‘Do you think we’ll get the test results today?’  I ask, unable to keep quiet for long. 

‘Maybe.  Dunno.  We’ll see, eh?’

He grins at me and returns to his jottings.  Some time ago the back of a fag packet would have served perfectly well as his office.  Not so now.  ‘Busy’ barely describes the business.  I’m sure Scarborough would have slipped into the sea had it not been for ‘DNC Scaffolding’ propping it up for the last twenty years.    

We’ll see…

That’s what I used to say to the kids.  It means:  ‘be quiet and bugger off and play.’

I reach for another magazine but think better of it.  The receptionist is looking at us.  She probably recognizes us, as this is our third appointment.  I ignore her and focus on the door we first went through three months ago, clutching Beryl’s report. 

 “Peter Harrop.  Neurologist.” says the sign.

Maybe Nigel’s right.  Maybe it is just stress.

But if that’s the case, is it really necessary to carry out so many blood tests you could fill a bucket with the stuff?   Should you seriously be expected to undergo an MRI scan to determine your stress level?   Like there’s some stress indicator on your brain that glows red when you’re sucked into the tube?   Is there any need to endure the severity of pain brought on by electromyography and nerve conduction tests, where they stick needles deep into the muscles of your arms, back, legs and throat and then run an electric current through them?   Not only once, but twice?  And, could it possibly be normal practice to perform a biopsy on a chunk of your thigh muscle in order to examine it for what?  Stress?

Stress, my arse.

The door opens and Peter Harrop appears.

At last, I think, getting to my feet, although the wait has been all of seven minutes.

 ‘David.  Hello again.  Come in, come in.  Good to see you.’

For a second I’m confused, I thought we were in next.  And then Nigel is shaking the neurologist’s hand like he’s an old mate.  Such a mate Nigel hasn’t actually told him his name!  I follow quickly, silently cursing my husband’s parents who gave him the forenames of David Nigel and thereafter referred to him only as Nig.  What were they thinking? 

Perhaps they went off the name ‘David’ as soon as it was registered?  And perhaps, in those days, they might have worried that ‘Nigel’ sounded a bit posh?  It’s possible, back in the 50s.  Up north anyway.  Maybe they were loath to give him a label that could get him beaten up by kids called Gav, Jack or Mick?  Who knows?  So ‘Nig’ (rhymes with pig) was it.  

Only family call him ‘Nig’ now, to everybody else he’s ‘Nige’ or ‘Nigel’.  In official circumstances, however, he is always referred to as David.  He never tells these professionals his preferred name.  It amuses him.  It annoys the hell out of me.

So, here I am, sitting next to some bloke called David, before a grand walnut desk, feeling like some naughty kid in the Head Master’s office.

 ‘Now, David, how have you been?’

Peter’s a pleasant chap, fortyish, easy manners with a confident air - as you would expect - at seventy-five quid a consultation.  He studies Nigel’s face with genuine concern.  He glances at me, acknowledges my presence, and nods.  A slight smile tugs at his mouth.  A similar smile tugs at mine.  Then both smiles disappear and we turn our attention to Nigel. 

‘Any developments?’

Nigel laughs.  ‘No, I feel great.  It’s just this speech.  I sound pissed all the time.  Which, I am a lot, but not at eight in the morning!  It’s a bugger for business.’

Okay, let’s examine you again then shall we?’

And once again, just like the last visit, Nigel sits on the bed and follows Peter’s instructions to push hard against his shoulder with one leg, then the other.  Arms next.  Nigel holds out his right arm for Peter to push down on it.   It doesn’t budge. 

‘Three of us could swing on that before it gives way.’

We all laugh, but it’s true.  Years of scaffolding have given Nigel the kind of muscles and strength that even Popeye would envy. 

‘And the left.’

To our complete surprise, Nigel’s left arm gives way under pressure.  That’s a change.  How odd.

‘Have you noticed any weakening in this arm?’ Peter asks.

‘Only after lifting six pints.’

Joking.  Always joking. 

‘Okay, just stick out your tongue please.  And leave it out for as long as you can.’

Nigel sticks out his tongue while Peter resumes his seat behind his desk and studies his computer screen.

It’s not possible to look anything but ridiculous when your tongue is dangling from your mouth like a panting dog, and it is clear that Nigel feels every bit as silly as he looks.

For just a second I fight the urge to laugh, but actually, this is quite disturbing and not at all funny. 

Two torturous minutes pass before Nigel can stand no more and at last Peter beckons him back to his seat.

It’s very quiet.  The tongue thing seems to have stolen our will to chat.  A melancholy mood hangs over us.  Now I really do feel like that naughty kid in the Head Master’s office.  Peter continues to stare at his computer screen as though hypnotized.   What’s he’s reading, I wonder.  Must be the test results.  Has to be.   What’s the outcome?  Is he going to tell us in a minute?  Surely he is. We’re paying after all.

The silence continues for too long.  I glance at Nigel, willing him to say something.  Ask the question!   He grins at me.   Shrugs his shoulders.  Should I ask?  Is it my place?   No, it should be Nigel.  I remain quiet so as not to disturb the important fellow behind the desk.  I’ve always deferred to authority: doctors, lawyers, teachers and the like.   Today, I hate myself for it.

I can’t stop fidgeting.  I cross and re-cross my legs.  I reach into my handbag and check for messages on my phone.  Three.  ‘What did he say?’ from Craig, ‘Any news?’ from Ellie and, ‘Well?’ from Becky.  I glare, again, at Nigel and  again, he shrugs.  He’s actually starting to look a bit bored. 

I make a big deal of reading the certificates that are hanging around the walls.  How long does it take to become a neurologist?  What makes a person choose that particular specialism?  Wonder where he studied?  Why do I care?

And then,

‘Prepare yourself David, for a barrage of tests … ‘

Oh for goodness sake!  ‘What?  More tests?’  I snap, as agitation overcomes politeness.

‘Why?’ says Nigel, at last.  ‘What are the results of the others?’

Peter adopts a ‘let me explain’ pose and leans forward across his magnificent desk.  Perhaps he is trying to minimize the space between him and us.  Trying to bring us together, somehow.

‘Well, you see, the tests we’ve carried out so far are all about elimination.’

Nigel and I nod, like we understand.  We don’t.  We pretend.  Our faces say, ‘Go on…’

‘I suspect that this has been creeping up on you for some time.  Imagine a cruise liner on the horizon.  It’s just a dot, you can barely see it, but you know it, or something, at least, is there.  Only as it comes closer can you become certain of what it actually is.  These tests can tell us what it is not.’

‘I see,’ says Nigel.

I see too.   But I’m not having it.

Oh no you don’t.  No way is today’s appointment ending here.  No way.  You must have a clue by now.  Even I have my suspicions.  I’ve been on the net, for God’s sake.  I’ve read all there is to read about dysarthria and its causes.  There’s no way, with all your certificates, that you don’t know exactly what this is!

And so I force him to tell us. 

‘But what do think it might be?  You must have some idea?’ 

Of course he does.  It’s written all over his face. 

There is an almost imperceptible sigh, and then a pause, as Peter looks from me, to Nigel, then back to me.

 ‘You have asked …’

It’s clear from his expression that he wishes I hadn’t.

‘ … so I must tell you.’

Peter now focuses solely on Nigel. 

I reach for Nigel’s hand.  He enfolds mine in his and squeezes. 

And we listen, hand in hand, as the neurologist tells us he thinks Nigel has Motor Neurone Disease.

We hear the words, ‘life-limiting’ and ‘no cure’.

We hear that Nigel is going to die.

We sit very still.  We are very quiet.  We really don’t know what to say. 

Moments like this are not at all what you imagine.  There is no warning.  No darkening sky, no rumble of thunder.  The sky is still blue and the sun still shines.  Your heart doesn’t actually miss a beat and the world doesn’t hold its breath.  There is a stark ordinariness about it.   

Everything is exactly the same as it was a moment before.  Absolutely nothing has changed.

And yet, everything has changed. 

Nothing can ever be the same again.

Nigel, MND, and me. 1: The first signs. November 2006

It is one of those ‘glad to be alive’ days.  The late autumn sunshine is unexpectedly warm and the trees seem loath to give up their fiery leaves of glistening gold to make way for winter.    We spot a nice looking pub on the drive up – we’ll have lunch there on the way back.

The place isn’t hard to find and we arrive exactly on time for Nigel’s appointment.    We found her on the net.  Beryl Foster.  Speech Therapist.  Retired from the NHS and now sees private patients.

Beryl’s bungalow is very much like her - petite, elegant and slightly old-fashioned.    It’s obvious that she lives alone.   A widow, I assume, because there are no clues to suggest a masculine presence.  No hat and coat in the porch, no half-read newspaper spread across the dining table, no garden spade leaning against the shed at the end of the manicured lawn, no photograph on the mantle-piece.   No photographs at all, in fact.

Not a widow, but a spinster, I decide.  No hubby, no kids.   In reality, she’s probably had three husbands and got five kids but is simply not as obsessed with family photographs as I am. 

Not that it matters of course.  Her marital status has little to do with why we’re here.

The deterioration in Nigel’s speech has been a slow, creeping process.   It has worsened so gradually we can’t remember exactly when it started.  We dismissed it for a while, thinking nothing of it and ignored the concerned glances from family members who, mostly, remained silent – in much the same way that you tactfully ignore a puss-spewing cold-sore on somebody’s chin.        

Some days there can be no more than a mere tripping over a single word, but then there are times when whole sentences are swallowed up in an indistinguishable slurring of senseless sounds.  Occasionally, Nigel’s tongue skids around his mouth like a scooter in a skate park, and conversely, his tongue can lie like a lump of lead and he can scarcely lift it.

His speech has now assumed a pattern where he sounds exhausted and drunk.  This is particularly pronounced on the phone and so obvious that it can no longer be ignored.  Not at all good for business, and the reason we looked for Beryl.

Nigel, sitting at the table with Beryl, is struggling to speak.   He’s reading aloud from a list of exercises she’s given him and looks just like a naughty schoolboy going through his lines with his teacher.   However, like all good teachers, Beryl’s patience and encouragement is helping Nigel overcome his evident embarrassment as the exercises become increasingly difficult for him to manage.

He copes well at first.   Single words present no particular problem, yet specific sounds, ‘t’, ‘d’, ‘k’ and ‘g’, where the middle and back of the tongue need to get involved and do some work are causing no end of trouble. 

It’s been twenty minutes now and he’s getting agitated.  The phrases have become longer and more complex.   The effort Nigel is making to force the words from his mouth is distressing both for him to achieve and for me to watch.    It’s as though his tongue has been glued to his palette and it’s now impossible to understand what he’s saying.   When did his speech get so bad?

Listening to Nigel as I sit here drinking tea from a delicate china cup, served on a tray with matching teapot, sugar bowl and milk jug, surrounded by porcelain figurines – Lladro I suspect - of ladies adopting elegant poses along the windowsill of the conservatory where this strange drama is unfolding, I think back to that night a month or so ago when I was having a drink with Mel and Paula.  Mel, never one to tiptoe around a point blurted out,

‘Julie, what’s up with our Nig’s speech?’  

‘I’ve noticed that too,’ said Paula, ‘He sounds drunk.’ 

One of them, can’t remember which, went on to ask,  ‘do you think he’s had a stroke?’

‘Has he fuck!’ I snapped unfairly, with all the erroneous authority of someone who has absolutely no medical knowledge.    I failed to mention that I had been thinking exactly that. 

Nigel thinks it might have something to do with acid reflux, which is torturing him at the moment, or even something as basic as the pressure of work.

 ‘It’s stress,’ he has insisted, time and again, ‘nothing to worry about.’

But he doesn’t seem stressed.  Nothing unusual is happening.  Business is going as well as ever, the kids are all okay - their lives panning out so perfectly you’d have thought they’d planned it.   As for us, we’re probably having more fun than ever.  We meet after work in the pub, have a relaxing couple of drinks, choose a restaurant, go home.   Couldn’t get much better.  

And since when has stress affected a person’s ability to speak?

Nigel has had enough and pushes the exercises away.

‘My tongue is out of control!’ he says, laughing in an attempt to mask his discomfort.  It doesn’t quite work.  ‘Let’s get to that pub.’

‘All done?’  I ask of Beryl.

Smiling, Beryl gathers the papers together, along with her notes.  She places her hand on Nigel’s shoulder and apologizes for the difficulty he has experienced.    There’s a certain gentleness about her.  I like her.

‘I’ll get my report written up today and it will be in the post to you both tomorrow.’

Not known for my patience and quite unable to wait for the report, I ask,

‘What is it, do you think?’  

‘Well, it’s a mystery,’ says Beryl, looking puzzled.  ‘I know what it is, but I don’t know how you’ve developed this condition Nigel.  Have you been in an accident?  Had a bang to the head, or any kind of trauma that you can think of?’

‘No.’

‘And this has developed slowly?  Not overnight?’

‘Yes.’

‘What’s the condition?’  I ask.

‘”Dysarthria,” or, hot-potato speech.  Speaking as though you have a hot potato in your mouth.’

The description could not be more perfect.  I make a mental note to get straight on the net when we get home.

‘What’s the treatment?’ says Nigel.

‘Well, the treatment depends on the cause.  And we don’t know what that is.  I can’t help you without knowing that.   When you get to the bottom of it will you please let me know?  I would be very interested.”

‘Of course.  What do you suggest we do next?’

‘I think you should see a neurologist.’