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.’

Going Dutch

If someone said to me that, for my special birthday celebration, they’d bought me tickets to see a show starring some fella I’d probably never heard of, but here’s a list of his attributes:

• ·      he plays the violin, conducts an orchestra and a choir;
• ·      a personable chap with a catchy sense of humour;
• ·      invariably joined on stage by opera singers of whom you will never have heard, never having been to an opera in your life;
• ·      who will be singing arias that you will certainly not understand,

my response might have been,

“Mmm … an Amazon voucher would have been nice!”

But, thankfully, my sister is not as rude as me.

However, to my surprise and subsequent shame, my sister Paula had indeed heard of the great Andre Rieu and was immensely pleased with the gift. 

Now for those of you who are not familiar with the name – and if you’re under fifty, there’s every chance that you are not; Andre Rieu is a hugely successful performer.  His spectacular shows tour the globe every year, entertaining many thousands of admirers.  But perhaps, the most popular events in his year are the performances in his home town of Maastricht – a delightful city in the Netherlands, where, I would wager, every single citizen has not only heard of him, but is also a fan.

So where better than Maastricht itself for two ‘new-to-Rieu’ groupies to see what all the fuss is about?  And how convenient that Becky and Daz live less than half an hour away from this most attractive city, therefore earning them an invite to the big event in exchange for a few nights’ bed and board.   

Even I would now deem the Amazon voucher a poor second to this nice little trip. 

Andre Rieu’s Maastricht concert is performed in the open air in the huge central Vrijthof Square.  The colossal podium and two big screens occupy one side of the square; concert seats fill the centre and restaurant terraces line the other three sides.

So, where does one chose to sit in this gigantic arena?

After a bit of research on YouTube and a very helpful recce to Maastricht by son-in-law Daz I had three options to consider:

Option 1:  Buy concert tickets for optimum view of the stage, but unless seated on the first few rows you watch the action from the big screens.  Plus, the folding chairs are metal and look uncomfortable, but you do get a free bottle of water.  A bit tempted …

Option 2:  Buy ‘Terrace Experience’ tickets for a restaurant at the side of the square; no view of the stage but an excellent view of the restaurant’s own big screen.  Comfy chair, three course meal, bottle of wine.  Bit more tempted …

Option 3:  Get a move on and book tickets for one of the two restaurants that offer an amazing and direct view of the actual stage and screens.  Comfy chair, three course meal, bottle of wine.  Very tempted …

Dilemma?  Hardly.  Option 3 it was.

On the evening of the concert the area outside the square buzzes with anticipation as the crowd gathers to wait for the barriers to be removed at 6.30 pm when those who have booked for the terraces are shown to their tables.   The meal is a no nonsense affair with only two choices as it must be completed before the concert starts at 9.00 pm.

The race for tickets was worth it.  We had a great table with a fabulous view.  Within seconds our waitress had taken our order and the evening was underway.

We were sharing our table with Dutch people, who amiably shook hands and introduced themselves.   On learning we were English, my immediate neighbour, delighted at having been presented so easily with a victim, proceeded to force on me his numerous and newly acquired Brexit barbs.  

This continued throughout the meal.  Being a sensitive soul I was conscious that he may feel a little insulted by our decision to leave the European Union and, as I was in his country and eager to ‘fit-in’ I felt compelled to impress on him that I came from European stock.   In vain I boasted of my Spanish ancestry.  In my Dutch friend’s opinion, Bilbao, in northern Spain (from where my ancestors hail) isn’t ‘real’ Spain, so it doesn’t count. 

As this was a special evening for Paula (who, by the way, had so far spent the entire time trying to attract the attention of all passing cameramen in the hope of featuring on the subsequent DVD!) I was certainly not about to argue.   Especially with a Dutchman – they are giants after all! 

I suspected that, short of wearing a T-Shirt emblazoned with “I voted REMAIN”, there was nothing I could say to placate my neighbour, so I gave up. 

As it was, the marching band heralding the arrival of Andre and his entourage had reached its crescendo and Andre’s appearance on stage gave me the opportunity to curl, ever so slightly, my stiff British upper lip, and present him with my extremely English back.

Even Andre couldn’t resist a harmless jibe at us Brits.  As Maastricht welcomed him to the stage he talked of how music brings people together - people from all over the world - of all nationalities.  Indeed, he said, there were seventy-eight nationalities present in the audience that very night.  (Shame there wasn’t a Spaniard right next to my Dutch friend!)

For obvious reasons, Andre focused his attention on only one of those seventy-eight nationalities,

‘For all the English people here,’ he said, ‘welcome to Europe!’

The well-meant merriment at our expense soon waned to make way for a musical and visual extravaganza of epic proportions.   Whether to your taste or not, it is a true pleasure to witness the performance of singers and musicians of such excellence. 

There is no need to understand the language of the arias.  The haunting melodies, the drama of the music and the inspiring supremacy of the human voice is its own language.  An arrangement, as Becky will affirm, designed to cause the spine to tingle and the tears to flow.

But perhaps the highlight of the evening was the waltzing.  

And I’m not just talking about the one hundred professional couples that waltzed their way into the arena, swishing amongst the audience like the shadows of swirling spectres, before besieging the square in an enchanting, Disney-like, panoply of perfection.

No, I’m talking about Paula - and her waltzing.

After all, this was her special night.  And how often does one get the chance to waltz with a giant?  Especially when one has no idea how to waltz?  Not often, I can tell you.  I mean, they weren’t exactly selling tickets.  There was no raffle, no offer even, to barge your way through the merely ordinary to seek out the tallest, most elegant Dutchman that ever waltzed the Vrijthof.   But Paula was determined!  ‘I want that one!’  she declared.  ‘I want to waltz with him!’ 

To be fair, she has always had excellent taste.

Her wish would not have been granted had it not been for the lovely Daz, who waltzed her into the arms of this big friendly giant, bowing most apologetically to the angel in the white dress who was suddenly bereft of her partner, given that he was now stomping around the square with our kid!

Well, at least it wasn’t the conga! 

No, that came a few minutes later.   The jig of joy, or snake of shame – however you regard it - is a feature of all of Andre’s bashes.  Those who have enjoyed the concert from the restaurant terraces seem to be the ones who join the throng.  Can’t imagine why.  The wine, perhaps? 

To my amazement, we didn’t join it. 

Or, did we…?

Better order the Andre Rieu Live In Maastricht 2016 DVD to find out!

Just another Friday night ...

There has been a long-held tradition in my family – well, amongst the women at least – that Friday night is the night that we should get together, gather in whichever is the hosting house, eat, drink, plot and scheme in the way that only women can, and simply celebrate the fact that it is Friday.

The last forty or more years have seen some spectacular Fridays.  There has been much laughter and much heartbreak.  There has been a staggering scattering of significant secrets and much searching of souls.  We girls have, of course, spent many hours righting the world’s most dreadful wrongs and undoubtedly just as many hours talking an astounding amount of bollocks. 

Not surprisingly, all of our gregarious gabbing has been accompanied by the gobbling of gallons and gallons of wine.

Well, this Friday was no different.

Eleanor was this week’s host.  Paula and I had been willingly lured to Ellie’s lair by the promise of yummy food and a drop or two of vino, but there was to be more than idle chitchat and girlie gossip featuring on the agenda.  Ellie had not invited us merely because she loved us and it was a Friday.  Oh no, we had a mission to accomplish!

Interior design was the theme of the evening, as the lounge had reached that critical point of ‘finishing off’.  There were pictures to be hung and new furniture to be arranged.  Not wishing to show off, but, Paula and I are pretty good at that kind of stuff and you would be surprised at how many people are simply not.  And, weird as it may sound to anybody below the age of thirty – that placing of paraphernalia in the right position can make for a pretty good night!

And indeed it did.    

So, having won our place on the yet to be invented home makeover show entitled ‘How to hang pictures and arrange furniture’ we bade goodbye to our grateful host and left for home.

It was all going so very well …

Now, I am tempted to blame Ellie’s house.  It, being in an elevated position sporting a ridiculous amount of steps leading from the gate to the front door, interspersed with paths of slate and all things sharp and jagged …

Or, could it have been the shoes that I had chosen to wear?   Given that we were walking and shoes and I do not get on terribly well, I had decided to wear flat, comfy, ever so slightly too big shoes that don’t hurt a bit.   A mistake, perhaps.

Or, maybe it was the dog, and he just tugged too hard on the leash?

Yet something, I know not what, made me fall. 

Obviously, there is no way it could it have been the wine!  No way at all.

If only that had been the end of it.  A little bounce on the bum is really nothing to remark about after all.

But no, my heroic sister Paula, in her noble and selfless attempt to save me from harm, launched herself in my path and plummeted, back-first, into one of the many sharp and jagged things that litter the route from Ellie’s door to gate.

Yes, it’s all the fault of Ellie’s house!

Paula, battered and broken, could barely breathe.   Something was very wrong.

‘Do you need an ambulance?’ I asked, being the caring sister that I am.

‘No, let’s just get home,’ she gasped.  

This was now our second mission of the night.  

There is very little as powerful at propelling a person along as a spot of Pinot and we made it, uphill all the way.

At some point along the way I lost one of my ever so slightly too big shoes.  But, despite being breathless and barefoot, we made it home.

The following morning it was clear that all was not well.  Paula spent the next twelve agonising hours in A and E with a fractured rib.  An overnight stay was advised as her pain was so severe.

‘Had you had a drink at all?’ asked the Doctor.

‘Er…’

No!  It’s Ellie’s house!

As I walked the dog that morning, we came across an abandoned shoe.  Bodger (my dog) shoved his nose right in it, as if to say, ‘Hey, Mum!  This smells just like you!’  Averting my gaze I passed by, tugging the dog behind me and yelling, ‘leave that tramp’s shoe alone!’

I realise that two ladies, both the wrong side of middle aged, staggering up the South Cliff in Scarborough, one barely able to breathe, the other bearing only one shoe, is not what one could consider attractive, desirable, or even remotely tolerable. 

But … well …  it was a Friday!