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  • Writer's pictureGuest Writer

Vin Ray, former Head of International News at the BBC

Updated: Feb 9


Vin Ray is the former Head of International News at the BBC. His teams won BAFTA awards, RTS awards, Emmy awards and many more. He gave many of the BBC’s best-known broadcasters their first jobs in foreign news and was described by Andrew Marr as a ‘revered teacher’.









 
A personal piece by Vin Ray

‘Those three old words…’


I knew really. But as a fully paid up member of the male species I followed the time-honoured path trodden by all blokes: avoid going to the doctor at all costs. After all, they may find something wrong… It was my ever-loving wife who finally made the appointment. By the time I got to see a doctor I had all the tell-tale signs: stooped posture, scraping left foot, no arm swing, anxiety, glacially slow movements and so on. My walk and gait alone meant the doctor had diagnosed me before I even sat down. Many a songster has mentioned ‘those three old words’ – but they didn’t mean these three old words: “You have Parkinson’s”... It was shortly after three o’clock on the 23rd July 2018. I had known five years before that something was up.  I could no longer pretend it away. Deep down I was relieved to put a name to it. That said, I cried all the way home. And thus I arrived at what Zadie Smith calls ‘the most melancholy of euphemisms’: the new normal.


Two deaf people trying to whisper


It had been obvious to friends and family that something was wrong. A few had guessed what it was. After the diagnosis comes the communications strategy: who, whether and how to let people know. I decided on family first. So picture the scene. I have just returned from the supermarket with my elderly mother. Whilst out, I have finally told her what the doctor has said. She tries to affect the sense of taking it in her stride, but her face contorts to a look of panic bordering on alarm. We get home. My father is sitting in the kitchen. They start to unpack the groceries, while I am despatched to the living room down the hall. And it is at this point that my mother – who’s deaf -  attempts to whisper to my father – who’s deaf: “Vin’s just told me he has Parkinson’s”. I hear this first attempted whisper as clearly as I hear my dad’s reply: “Eh?”. The third attempt is nearly deafening to me, let alone my father. 


I am staying over with my parents and later that night I say goodnight and retire to bed, leaving them talking. The bed I’m in is up against the living room wall, which is wafer thin. I can hear every word they are saying. “I wonder that we don’t pay for him to go private,” says my mother. “You shouldn’t keep on about it,” says my dad. It was my dad who said, “ It’s just a phase you’re going through,” as though it were a rash that would go away. The attempted whispers in the kitchen just struck me as funny. But this late night conversation laid a heavy melancholy blanket over me as I tried to drift off.


Whispers off


I now realise that I will be the subject of many ‘whispers off’. I will be talked about endlessly out of earshot, but hearing it when you’re not supposed to is like reading your own obituary. “He looks so… lost,” is my favourite so far. Damn right I am.


“How ARE you?”


I could do a lot worse than to look to my mother as a role model. Aged 94, her private life is one of almost permanent, grinding pain. Her public persona is cheerful, chirpy and chatty.  “Mustn’t give up,” she will often say. But her most common mantra is, “there’s always someone worse off than you”. This, everyone agrees, is indubitably true. But if it is true, then we end up in something akin to what theologians call the causation argument: if the black hole created the universe, what created the black hole? Following this logic, if there is always someone worse off than you there must exist, somewhere on the planet, someone who is so badly afflicted that no one is worse off than them. They are bottom of a seven billion-strong league. Lord knows with what afflictions they are suffering, but they probably support Spurs.


I mention this issue of private and public persona because long-term illness presages a dilemma: how – in public - to answer the question: “How are you feeling?” Should you be honest and say, “I’m scared shitless”. Or do you skip down the yellow brick road laid by my mother: “Yep - mustn’t grumble, how are you?” Clearly the latter leaves everyone feeling better. Except… people say to my wife, Sara, “he actually seems really well”, leaving Sara to trundle home with the reality of the introverted, lumpen misanthrope I am at risk of becoming.


Land of Hope and Glory


One of the more difficult symptoms of Parkinson’s is that it makes you have to think about how to walk – something that comes so naturally otherwise. It also stops sufferers from swinging their arms. Many patients develop what’s known in the trade as a ‘shuffling gait’: shoulders bent forward, feet scraping along the ground and bent, stiff arms. And this trio of symptoms is firmly among my afflictions.

 

Well, one summer day I was having lunch in Peckham with my wife and one of my sons. And, for some unfathomable reason, as I wound my way through the back streets to the car park, I started humming Land of Hope and Glory. I really don’t know why. But I noticed something remarkable – my walking had become normal and vigorous – and I was swinging my arms. It took me a while to realise but it slowly dawned on me that I was walking to the beat of the music in my head.


Get with the groove…


Armed with this insight, the following day I went into Greenwich Park with my phone, headphones and music. I quickly discovered that ‘Heroes’ by David Bowie had me marching forcefully along to a beat; ‘Signed, Sealed, Delivered’, by Stevie Wonder did the same thing; had the same beat. So I began to wonder if I could cheat my brain by walking – and swinging my arms – to music.


But different songs have different beats, from dreamily slow to manically fast. And our walking pace is also slow or fast, depending on how flat or inclined the surface is. So how would I know which songs to choose? At this point I wondered whether there existed a phone app for a metronome – and within minutes I had downloaded one. This had a facility for tapping in the beat of a song at which point the metronome would tell me – provided my tapping was accurate - how many beats per minute any song was. ‘Heroes’, it transpired, is 112 bpm.


‘Young Americans’, also by Bowie, turned out to be 84 bpm: ideal for climbing the steep hills in the park. These I discovered by tapping the songs’ beat into the metronome. I was reflecting on this discovery when I had another thought: what if I just Googled ‘songs at 112bpm’? So I did. Enter jog.fm, which listed the many thousands of songs that had 112 beats per minute. Indeed, you could put in as many beats per minute as you wished and it will tell you which songs fit the bill. 


“Speak up, man!”


Difficulty walking is just one of the difficulties faced by Parkinson’s patients. As Head of International News at the BBC I was very used to public speaking – doing presentations, chairing editorial meetings and generally shouting across the newsroom.


But as my symptoms developed one of the things I noticed was that my voice was becoming weaker, thinner and quieter. My sentences trailed away at the end and I noticed that people – my wife especially - kept asking me to repeat what I was saying. I gradually realised that what sounded to me as normal volume was very low volume to those I was talking to. I was mumbling, I had a flat monotone intonation and I was struggling to articulate my words.


Parkinson’s is a stealthy foe – it slowly eats away at your verbal fluency, you’re mental fluency and your physical fluency – and these things can erode your confidence. When you add to that a sense that people are thinking “Speak up, man!” and your struggling to find the right word, it can make you feel diminished - slower and more reluctant to participate in conversations.


Now, quite early on my consultant suggested I signed up for Lee Silverman Voice Training – or LSVT as it’s known in the speech therapy community. It took about a year before I got on it but it was well worth it.  It’s very intense - 4 sessions a week for 4 weeks. So you need to make physical and mental space. I don’t know how it works for others but the speech therapists came to my home for every session, which was fantastic service. 


The exercises are verging on comical and there was a degree of mirth about the animal noises emanating from our back room. But the therapists were brilliant – and remarkably straight-faced in the face of my gutteral utterances. 


The first exercise is to say ‘aaah’ for as long and as loud as possible, while the therapist measures your volume in decibels I did manage 45 seconds on one occasion, but most of the time it was around 20-25 seconds. There are other exercises including a vocal stretch where you start at the lowest note you can manage and then glide up in one go to the highest note you can manage.


I now think about how I’m speaking and I look for opportunities to exercise my voice. I get to practice every week with my mum, Peggy.  She’s 94, nearly blind, but loves to do crosswords. And because she’s nearly completely deaf I have to call out the clues in a voice that’s loud and clear enough for her to hear, without shouting. So it goes like this:  I’ll say, “Four letters beginning with D”, to which she’ll reply “C?” “No D”. “Oh P”. “No DEE!!” And so on…


The key question I suppose is does it work? It certainly did for me – my voice is stronger and I’m more confident now and, crucially, more aware when my voice is slipping. Most importantly of all Sara, my ever-loving wife, says she no longer struggles to hear me – unless I’m saying something she doesn’t want to hear.


Five years on…


As I write this, I am some five-and-a-half years on from that fateful visit to the doctors: ten years since I first suspected something was wrong. After the doctor came the consultant. And here was a stroke of luck: the doctor referred me to Guys Hospital in London. I have heard some sad tales about Parkinson’s patients’ experiences with the NHS. But my consultant, Thomasin, and the specialist nurses have been nothing but brilliant: knowledgeable, attentive and, crucially, available. I have, on several occasions, emailed them between appointments and got quick replies. “Don’t suffer symptoms,” is my consultant’s mantra: “Any problems let us know”. If I had to rank my consultant out of 100 I’d give her 99. Why not 100? She hasn’t listened to Movers and Shakers [I know – a serious transgression]. We – my wife and I - try to make use of the hospital visits. Each one is accompanied by a slap-up meal. We use the date of the first consultant’s appointment as an anniversary: we make sure we are away on that date each year.

 

The good, the bad and the cliche


So where have we got to? I’m definitely getting slower – physically and cognitively - and I find planning and logistics peculiarly tricky sometimes. I can’t walk as far as I used to – a real nuisance – and I have a raft of lesser symptoms [constipation, anyone?]. But had you said to me five years ago that this is where I’d be five years on, I’d have torn your hand off. My most disabling symptom is fatigue, but the truth is, I’m feeling pretty good. The component parts of that feeling? There’s the meds of course [for the cognoscenti: co-careldopa four times a day and a Rotigotine patch]. There’s tennis, once a week and preferably twice [choose a partner who’s not too much better than you]. To stretch the noggin, I spend a few minutes each day [okay, sometimes a bit more] doing crosswords [the Guardian], chess puzzles [chess.com] and Wordle [New York Times]. I see a personal trainer once a week [Annette, the gorgeous sadist]. And then there’s sleep. I tend to regard my daytime nap as a secret weapon. When I’m at home I get 45 minutes sleep between 1630 and 1800. This, to me, is like medicine and sets me up for the evening [no, it doesn’t affect my night-time sleep]. Finally, of course, be upstanding for the captain of my ship, the ever–loving Sara, ably supported by three wonderful kids. Having Parkinson’s is enough, but being married to someone with Parkinson’s requires deep reserves of patience, good humour and diplomacy. Luckily for me, my wife has those in abundance. 


Parkinson’s affects different people in different ways and at different speeds and I’d be interested to know what strategies others have deployed to keep it at bay. But if I were asked to nominate one thing that will make a qualitative difference to those in the early years it would be to sign up to PD Warriors and do the 10-week challenge. I did it and I ended up fitter than I’d been before I had Parkinson’s. I urge you to give in a try.


And so we carry on. We sit back and allow the truisms and well-meaning platitudes wash over us [“It just goes to show – you must live life while you can”]. Life is full of clichés as we embark on the rest of our journey. And the cliché that drives me most mad? The use of the word ‘journey’. Good luck.


Read more about the episode on Voice here.




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