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.’