Each week Rory Cellan-Jones guides us between the laughs and moans in the pub. Here is Rory's summary of this week's episode.
This week’s episode of the hit podcast about living with Parkinson’s is all about one symptom of the condition that I would bet few members of the general public would know about - speech impairment. The episode is led by a great broadcaster, my former BBC colleague Mark Mardell, whose voice will be familiar to many.
His old voice, broadcasting from Washington, Brussels and around the world, I should say. For, as he tells us, Parkinson’s has reduced it to a "querulous and pathetic" whisper. The effect on his life has been profound:
"Because I've been a broadcaster all my life, it undermines the way I feel about myself. But more than that, in the family. I'm used to being a strong dominant voice. And I literally feel invisible."
Gillian Lacey-Solymar has also seen her voice impaired, but in her case the blame lies with her Deep Brain Stimulation operation, which targeted the area of the brain which controls speech: "Mine just comes and goes, there are times when it goes entirely and I can't articulate a word. And people have to guess what I'm saying."
Paul Mayhew-Archer, who is preparing to have DBS, is worried by this news of a side-effect he had not anticipated. "My voice is quite important to me. So I'm sort of faced with this balancing act." Our guest Tim Grover, a speech therapist specialising in Parkinson’s is not exactly reassuring, telling Paul that speech impairment is a common side-effect of DBS. Gillian insists it is worth it, so beneficial has her treatment been in lessening the acute pain she was experiencing.
But what is going on more broadly when someone like Mark finds their voice fading after a Parkinson’s diagnosis? Tim Grover compares it to the impact of Parkinson’s on how we walk, a gradual furring up of the nerves and muscles which let us speak as well as walk. "If we think about the symptoms of Parkinson's - rigidity, slowness of movement - and if we were to superimpose those on the apparatus of speech production, so respiration, and foundation of the voice and articulation, those same symptoms play out, we don't see them, but we hear them."
We then hear from former BBC News executive Vin Ray about what appears to be the best way of treating this issue, Lee Silverman Voice Training, or LSVT. Tim Grover leads the Movers and Shakers in a couple of voice exercises to demonstrate what the training involves.
This week's main guests:
Tim Grover
Tim qualified as a Speech and Language Therapist in 2004 from University College London attaining a BSc in Speech Sciences, he later completed a Masters of Research in Speech Language and Cognition from the same institution. He is currently completing a PhD, investigating how medication and stimulation affect hypomimia (reduced facial expression), also at UCL.
Vin Ray
Vin 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’.
To read more from Vin Ray click here.
I used to be Mark Mardell
Mark's Musings...
Mark Mardell is patron of the British Voice Association and made the following speech at a recent event:
Nearly everyone feels a sense of nervousness when speaking live, particularly in front of a real, live audience. The fact that I have Parkinson's both increases and decreases those nerves. After all the fear is that somehow you make a dreadful hash of it all. Parkinson's is a ready-made shield – an obvious excuse if I cough, splutter, lose my place, or drop my notes. I hope I won’t but know this conference will indulge me.
Indulge me too on drawing back the curtain on a DOMESTIC SCENE. The fifth time I’ve been ignored I crank up the volume as high as it will go and it comes out an angry shriek - "I said I’ll do the dishwasher after I finish writing! You just aren’t listening!"
Jo, my wife, snaps back - "I hate it when you use that tone. You’re just being rude and aggressive."
"It’s not a tone it's my voice - that’s what my voice sounds like now! You’ve got to get used to it."
The trouble is I haven’t taken my own advice, I haven’t got used to the way I sound, and while it’s true trying to be loud comes out like a petulant banshee wail, THAT’S at least in part because I do feel petulant - ignored, frustrated angry and diminished. My voice was my not so secret power and Parkinson’s is kryptonite - turning me into a low decibel weakling…
More glimpses into the madness that is the Mardell menage in a moment, first a little background. I have been a journalist all my life since leaving university and never imagined not doing it. When I did my last ‘World at One’ for the BBC I declared on air that I certainly wasn't going to go away and trim the roses… no retirement for me! I changed my mind in June 2022 not directly because I had Parkinson's but because I needed a break from the self promotional slog of freelancing and even put a hold on the book on Brexit I was halfway through writing. I did worry that my sense of self was so bound up with the job, it had been such a huge part of my life, that I might simply evaporate without it. Rather to my surprise it didn't - for good or for ill.
But my identity was about to get holed below the waterline. Torpedoed by Parkinson's. Journalism is about several things in my mind but the most basic, most obvious is communication - whether writing or broadcasting or using social media, what we are trying to do is tell people stories - setting out what you think and feel and what other people think and feel. Primarily even for somebody working in television and radio that means typing or, for the hopelessly old-fashioned and romantic, writing longhand in a notepad. Parkinson's makes handwriting very small and difficult to read even for the original author. I’ve just done a shopping list - what do you mean 'shelters' asks Jo - 'shallots' I eventually decipher and what do I mean by 'fascist pigs and tinned shoes' - I dunno - ah! Maybe 'figs or another fruit like cherries'.
As for typing - I was a fairly proficient touch typist, which in effect means rather miraculously words flew straight from my brain onto the page without conscious mediation. I can still type and I can't revert to one finger stabbing - my brain won’t let me, but it is deliberate, slow and laborious. This alone has changed my life, further slowed down a routine already made much slower because of Parkinson’s - who knew it could take 10 minutes to put your trousers on the right way. Answering routine emails and trying to do a daily diary takes up most of the morning. Given that Parkinson’s makes me wake up absurdly early there is more morning to play with, but I feel like going back to bed by lunchtime. But this is an irritation - only a partial assault on who I am. You know what the full assault is sounding quavery and wavery, sounding slightly drunk - and oh so soft.
The reason I say it in a yet to be broadcast edition of movers and shakers - "cue violins - sometimes I feel like saying I used to be Mark Mardell" is really down to my voice. Like many broadcasters I suspect who are not blessed with deep dark voices like chocolate and gravy I don't actually like the sound of my voice, I always felt it was rather hollow, too thin. After 40 years of listening to it back at varying speeds and hearing in edits the same sentence over and over again you get pretty used to this tool - and if I thought of it at all that's how I thought of it just another tool in the kit, like speed reading or good short-term memory for sounds and phrases. Not central to my very being. How very very wrong I was!
Looking back the first signs something wasn’t right was when I recorded my first and last documentary for the BBC as a freelancer – I kept stumbling over words and running out of breath. I kicked myself but it happens sometimes, and I put it down to no longer doing this every day. I wont say I thought no more of it but I certainly didn’t think it was an undiagnosed illness. Maybe it wasn’t.
It was a few months after I’d been officially declared a Parky that it started to hit. I noticed people couldn't hear me very well, and my voice was dramatically changing - much weaker, much less powerful much less clear. Not only that and here is a bit difficult to disentangle what is mechanical from what is neurological if indeed a distinction can ever be made but also breathier slower, and a slower more awkward delivery. This has meant I’m more careful about what I say, planning interventions and interjections. As with typing ‘I’ became a conscious middle man rather than ideas becoming words flying straight from the brain without so much as a by your leave.
This wasn't the mere snapping of a vital work tool - I wasn’t really working so didn’t have to give it up - that would have been terrifying, but I did have a sense of self to surrender. I hope I'm not bombastic or pompous and I'm the same mixture of occasional overconfidence and deep insecurity that make up most of the human race. But to be blunt I’ve never been insecure about my ability to quickly absorb ideas and express them clearly. I was often the loudest person in the room able to more than hold my own often dominating the conversation. My wife was always telling me to lower my voice a little bit in public rather than booming out across the plains.
That’s gone - a distant memory of an innocently self possessed past life. It's most noticeable at home in a family setting particularly when all or some of my grown-up kids are around. My wife always said it was difficult to get a word in edgeways when our eldest Jake and I were in full flow. Not now - I simply can't get a hearing, I literally can't be heard. There are always rolling rumbustious Mardell debates whether over the best place to eat curry laksa in the capital, the humanity or otherwise of Neanderthals or what to watch next on Netflix. And I feel like my views are being ignored - I'm simply not being heard these days. That hurts. It’s not me. I have to keep reminding myself to grow up and it's because I'm literally quite literally not being heard.
I'm not being deliberately ignored, or talked over. But it feels like that. In fact it feels worse than that - Parkinson's is a life sentence rather than a death sentence but it does make you profoundly aware of your own mortality - and it feels like I'm already a ghost silently and unhappily haunting proceedings - I feel like saying "hello - I’m still here, I’m not dead yet". But I don’t. I wouldn’t be heard - they could stretch out their hands and it would go straight through me.
Well well well two cheers for the defeat of the patriarchy in one small corner of Surrey and it has made me reflect on voice as agency and power. Actually I always thought I've been pretty good journalistically, attempting to giving voice to the voiceless and for years at work, in the radio four offices and foreign bureau, tried to make sure those, literally or metaphorically with a quieter voice don’t get shut up, shut down or talked over. But that was magnanimity or morality from a position of strength - now I am the one who feels excluded and thus diminished .
In larger groups I was forced to nervously wait for a gap in the conversation to insert myself into it. Trouble is that would be humorous asides or that sharp witted lunge is rather blunted by delay - by the time I find my voice the moment has passed and I end up feeling even more left out than if I hadn’t bothered in the first place. Friends have been understanding and accommodating - seeking out meeting places where the noise levels are low and we can all be heard. Equally, I’ve never been embarrassed about my condition and as a shop assistant or waiter leans in to hear what I am saying I just tell her "I’m sorry, I’ve got a very quiet voice" and most are understanding and helpful. I tend to leave it there - no need for a medical discussion with every conversation. But then sometimes I do as Jo would say "play the parky card" to get sympathy and a dialogue going - and more convenient seating. Need an ice-breaker? Have you tried an incurable degenerative brain disease?
There are other strategies too - oh it's important not to let others take your place but sometimes you know you can no longer make that complex phone call to the gas people -indeed delegating tedious matters has long been a skill - or no longer play master of ceremonies. My daughter Lucy who used to work last in hospitality is particularly good at marshalling the Mardell’s - coordinating what everyone is eating, which with us tends to be a constantly changing kaleidoscope enough to confuse the most patient of servers, so that’s a real solution. It can have its downside too – celebrating our middle son’s Theo’s graduation I asked for another bottle of wine so the server looked to Lucy to see whether I was allowed to order myself. Does he take sugar? Dammit, I'm still paying!
It is not just when there is a mass meeting of Mardells that my voice is a problem. It's even worse when Jo and I are in the empty nest - she has become slightly deaf and never seems to hear what I'm saying or critically, that I am saying anything at all. I think sometimes it is harder for those who are very close and have been to accept change and cope with it. One of the most moving things I’ve read on the ‘movers & shakers’ facebook page is "my husband used to be my rock, now I have to watch him crumbling". I’m not suggesting I’ve been a rock nor that the change is so terrible - but you get the point.
That exchange I began with is typical. We make all the obvious mistakes - we try to shout from different rooms, I expect Jo to hear me when I have the music cranked up, she interrupts me halfway through a painfully wheezed sentence. We’re setting aside time to chat – that sounds oddly formal when we’ve been married 33 years but doing on the run doesn’t work. I need to stop feeling hurt and ignored and the kids need to treat me with a consideration I’ve never needed before.
I never saw this coming, or that my voice was so central to my sense of self, to my very identity. Of course when I say 'voice', it is shorthand for the ability to communicate, to be heard. It shouldn’t have come as such a surprise though - after all language along with appearance is how we project a sense of self, indeed it is one of the distinguishing features of human kind. My hope and plea is that those who have damaged voices, muted or silenced by disease or accident, are still allowed a voice in the wider sense - even without language we are still in human.
Mark's top 10 practice phrases. The idea is to have phrases that you regularly use and speak out loud. Here's a glimpse into Mark's domestic life...
I slept until about three and then went back to sleep until around seven
Alexa play radio 4. Alexa stop.
I'm going up to have a shower now or maybe a bath
What are we doing next Wednesday?
What shall we eat tonight?
How was Waitrose? Was it crowded?
What shall we watch tonight? We've got so much recorded!
When will you be ready to eat? Have you fed the cats yet?
I hope you have a happy Christmas and a brilliant New Year! 2024 - can you believe it!
It is the 2nd week of 2024 and already February looks busy! (Update this regularly!)
What is Lee Silverman Voice Training
LSVT Global grew out of a clinical need to help people with Parkinson’s regain their lost vocal abilities. The scope of this work was eventually expanded to help people with PD improve their movements. Years of research and development led to effective treatments and a vibrant company whose core goal is to improve the lives of adults and children afflicted with neurological conditions.
How effective is LSTV?
The following academic paper from a US Government website concludes:
"This meta-analysis demonstrated the efficacy of LSVT in increasing vocal loudness and functional communication among individuals with PD'.
Some useful links
Comments