Walking and Parkinson’s

The Salt Path was a prize-winning best-seller, and there are obvious reasons why. It is a story of triumph over adversity – author Raynor Winn and partner Moth are forced to leave their home for a nomadic life. It is a travelogue about a walk accessible to most of us – the Cornish Coast Path – but it has a twist of suspense. (Will they finish the path? Where will they settle afterwards?) And there are Ray’s musings on the current threats to English flora and fauna, as she describes the natural world she sees around her.

There is also the matter of Moth’s health – his experience of Cortico-Basal Degeneration is a running theme throughout. The Salt Path (2017), and its successors, The Wild Silence (2020) and Landlines (2022), together form a kind of single-case study in which Ray Winn records the effects on Moth’s abilities of alternate periods of long-distance walking, and of not walking – i.e. treatment and withdrawal of treatment. Moth’s Parkinsonian symptoms include movement problems like slowness, loss of stamina, poor balance and tremor. On each long-distance walk his symptoms improve markedly, and between the walks there is deterioration. But the motor symptoms are not the only things affected by walking. Ray also notices how the accompanying cognitive features of Parkinsonism improve: decision-making, adapting to change, map-reading, memory, and willingness to socialise with strangers. It is a powerful testimony, made all the stronger in Landlines by unexpected positive changes in scans before and after the walk.

The possible benefits of walking therapy for people with Parkinson’s Disease are not a new topic of debate. John Pepper recounted his attempts to slow his Parkinsonism in Reverse Parkinson’s Disease (2001) and guessed from his reading that walking therapy stimulated production of GDNF (glial-derived neurotrophic factor), a nerve-growth-stimulating chemical which has been shown to increase uptake of dopamine (Lin et al. 1993), to protect the relevant dopaminergic neurons in animal models of Parkinson’s (Choi-Lundberg et al. 1997). Walking did not permanently abolish the condition, for Pepper noted that if he stopped his walking programme then his disease deteriorated again. (Norman Doidge discusses Pepper’s testimony in some detail in his second book on brain neuroplasticity, The Brain’s Way of Healing (2015).)

But there remain questions about dosage (how far? how long?) and speed (how fast?) and even the type of walking (where?), because walking’s effects are incompletely understood. Ray Winn wonders about the effect of the environment, since Moth’s walking on their long-distance walks is almost entirely in the countryside, and even in the wilds of north-west Scotland. She also ponders the effect of having to walk on uneven ground, and negotiating considerable slopes and hills. There is walking, and there is Walking. Researchers are investigating the efficacy of several different walking therapies, such as split-belt treadmill walking, multi-tasking while walking, as well as the effects of varying walking speed.

Much of this research is done in the laboratory over limited time-spans, and so the question of dosage remains. How should clinicians incorporate into our advice for clients the findings of individuals like Moth and John Pepper, who are prepared to try out much higher doses of walking in complicated outdoor environments?

Whatever the laboratory findings, Ray Winn has added more evidence to support the old adage, ‘if you don’t use it, you lose it’.

References:

Choi-Lundberg, Derek L; Lin, Qing; Chang, Yung-Nien; Chiang, Yawen L; et al. (1997) Dopaminergic neurons protected from degeneration by GDNF gene therapy, Science; 275 no.5301: 838-41.

Doidge, Norman (2015) The Brain’s Way of Healing: Stories of Remarkable Recoveries and Discoveries, London, Penguin Random House

Lin, L-F H et al. (1993) GDNF: a glial-derived neurotrophic factor for midbrain dopaminergic neurons, Science 260 no.5111: 1130-32

Pepper, John (2011) Reverse Parkinson’s Disease, Pittsburgh, Rose Dog Books (originally published as There is life after being diagnosed with Parkinson’s Disease (2003), S.Africa, John Pepper and Associates,

Winn, Raynor (2017) The Salt Path, London, Penguin Random House

Winn, Raynor (2019) The Wild Silence, London, Penguin Random House

Winn, Raynor (2022) Landlines, London, Penguin Random House

Racism and Equal Temperament

               The most potent assumptions about the world are those we take for granted and don’t even know we are doing it. But once we see what we once failed to see, we are changed for ever, and so is our world. For example, the assumptions we make about musical tuning when we listen to music provide a helpful analogy for the recent debates about ‘woke’ culture and the defenders of a traditional ‘white male’ view of history.

 

File:Piano Keys warm.jpg
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              ‘Western’ minds hear music with a smudged sense of tuning that we absorb during our childhoods. This tuning system was only invented in the late seventeenth century, and popularised by J.S.Bach’s Well-Tempered Clavier. What is this ‘smudged’ sense of tuning? Well, string players such as violinists and cellists do not tune their strings to perfect fifths – that is, following the Pythagorean wavelength ratios of exactly 2/3 going up in pitch (or 3/2 going down). If they did, their highest or lowest strings would be out of tune with the equally-tempered keyboard  and woodwind instruments that they play with. Instead string-players tune to narrow fifths to avoid the accumulated consequences of the ‘Pythagorean comma’. No wonder Gregorian chant, Elizabethan madrigals, Indian ragas, Balinese Gamelan music and Chinese theatre music feel as though they belong to different worlds – in terms of tuning, they do.

               Once pointed out, the inherited perceptions of equal temperament – and the assumptions that come with it – become a tool of consciousness and a means to encounter different types of music with liberation and open-mindedness.

               The same applies to history. There is no going back, once we realise the Anglo-centric assumptions of ‘1066 And All That’ history – King John was a ‘bad king’, and the British Empire was a ‘good thing’. This is a history of false binaries, the ‘good’ versus the ‘bad’, in which historical figures are one thing or the other. There is no room for examining the questionable decisions of heroes like Winston Churchill, or to note attitudes that would not be acceptable today. It becomes obvious that there are many perspectives to human history, none of which has any legitimate claim to have more significance than any other. The perceptions of UK residents who are of the Windrush generation, or of those who came with the Ugandan Gujurati immigration in the 1970s will be very different, and different again from the perceptions of UK residents of white English ‘stock’.

               So how do we characterise the current British government’s ludicrous defence of statues of slave-traders, and insistence that British schools teach the story of white kings and queens irrelevant to many school children? Is this a problem of perception among intelligent white males, brought up in predominantly white society, educated in white schools and universities, who cannot see what they cannot see? Or is it a fear that once you give an inch, it is impossible to justify any new borderlines? Or is it a cynical appeal to a highly prejudiced and fearful sector of the electorate for self-interested political motives?

               Whatever the motives of conservative politicians, the reflex appeal to values of law and order, or to the Union Jack, cannot succeed long-term in creating a community spirit.

               And it is tone deaf.

(For a straight-forward introduction to equal temperament, see Howard Goodall’s Channel 4 Big Bangs of Music series of documentaries, episode 2, posted on YouTube at https://www.youtube.com/watch?v=41g2fSYZ4Sc )

International Women’s Day

How to celebrate International Women’s Day on a blog about people’s experiences of illness and recovery…?

I want to draw attention to Clemency Burton-Hill’s first time as a broadcast host since she disappeared from the airwaves last year (2020), after a brain haemorrhage. She experienced a 17 day coma following her bleed, and woke up unable to speak. For a broadcaster and a young mother this was almost unthinkable. Clemency was a regular presenter on the BBC, host of Young Musician of the Year, and for me, company on my drive to work as a host of Radio 3’s Breakfast programme. She was interviewed in January 2021 for Women’s Hour, and this morning turned the tables on Emma Barnett who was her guest on Classical Mix.

She has made huge progress with her rehabilitation, walking out of the hospital in April, and now working hard on her speech. So today, I want to encourage you to listen to ‘Clemmy’, back on the airwaves via BBC Sounds: https://www.bbc.co.uk/sounds/play/m000syd2

Her Woman’s Hour interview with Emma Barnett is also available at https://www.bbc.co.uk/sounds/play/m000rdkq where you can hear her articulate what it feels like not to have speech, even when you can understand what other people are saying.

Spanish Flu – Déjà vu

See the source image

Laura Spinney’s opportune history of the Spanish Flu, Pale Rider (2017), is an arresting work. As we live through the current lockdowns in response to Covid-19, we can learn by looking back to previous pandemics. It is reassuring to see how far medical knowledge and technology have improved since 1918, but also disconcerting to observe how we repeat the mistakes of the past.

In 1918 doctors and biological scientists knew about bacteria but not viruses. They were aware of the values of vaccines, but had only the beginnings of the techniques to construct them. So we have come a long way, in that modern science can identify the genetic and molecular structure of the SARS-CoV-2 virus, and invent a variety of vaccines to combat it within a year of its discovery.

But many features of human response to pandemics have been repeated a century on from the Spanish Flu – a pandemic that killed between 50 and 100 million people. Where speed of response was essential, governments have delayed their actions, allowing the virus to spread, to become more established, and the number of cases and deaths to multiply many times.

In 1918, some countries successfully applied quarantine and a cordon sanitaire to block infected immigration. Whereas American Samoa had a very low level of infection, neighbouring New Zealand administered Western Samoa was decimated. This time around, New Zealand has been one of the beacons of quick effective action, whereas the UK was remarkably lax at checking the initial inflow of infected individuals.

Crowds welcoming back fighters from the European killing fields provided ideal circumstances for the Spanish Flu to spread. In Chile, the crowds were to greet the local pilot who had become the first to fly over the Andes. In 2020, many governments were unwilling to cancel what became ‘super-spreader’ events – the March Cheltenham race-meeting, the Liverpool football match with Atletico Madrid, or the Republican political rallies in the USA.

The human tendency to blame others for a virus whose mutation to become the agent of pandemic is common to both 1918 and 2020. The Spanish Flu was probably not Spanish in origin: the first cases were in military camps in America and in Etaples, France, although it is hard to pinpoint exactly where. Human agrarian and urban society, with opportunities for mixing between humans and domestic and wild fowl and swine populations seem to be essential environments for viral progression to a pandemic. In 2020, Donald Trump repeatedly referred to the ‘China virus’, although again the full story has still to be established.

Pale Rider points out that in the aftermath of 1918-20, contemporary literature featured a theme of on-going sickness, including what came to be called ‘post-viral fatigue’. Writers like D.H.Lawrence, Virginia Woolf, T.S.Eliot, and Dashiel Hammett had their own medical problems, and were writing in a society characterised by many mourning citizens and many living with post-viral symptoms. Asylum records in neutral Norway showed a seven-fold increase in admissions for mental illnesses in each of the six years following 1918. We are already conscious of long-Covid and mental health problems, but the consequences for our society, its culture and economy, are still to work themselves out.

The absence of world leaders struck down by illness, men like Woodrow Wilson, Clemenceau, Mahatma Gandhi, and others, had important ramifications for decisions taken after World War I. In the last twelve months, the absence of Donald Trump, Boris Johnson, Macron and others, may have delayed decisive action.

Above all, the pandemics of 1918 and 2020 have shown contemporaries the gaps in the current medical and public health provision, and the gaps in information. Test and trace systems can only work if there is a good system of public health laboratories that can process results quickly and engage with local communities (as recommended in the 2016 GHRF report about pandemic preparedness). Hence we see the relative successes for Test and Trace in Germany and S.Korea, and the relative failure in the UK.

Laura Spinney’s book is engrossing, and also well-written. It has a perspective that encompasses much more than a simply Western view of the flu pandemic, including vignettes from India, Persia, S.Africa, Samoa, Alaska and S.America. A great read.

Spinney, L (2017) Pale Rider. The Spanish Flu of 1918 and how it changed the world, London, Vintage

Lance Armstrong and Verdi’s Requiem

What does the cyclist Lance Armstrong have in common with Verdi’s Requiem?
I recently heard a broadcast of Verdi’s Requiem (https://www.bbc.co.uk/programmes/m000q3bl ). This Verdi broadcast was particularly poignant, in that the performance was given in Milan Cathedral to commemorate those who had died in Italy during the 2020 coronavirus pandemic.

But what’s the connection with Lance Armstrong, champion cyclist and arch-drug-cheat of the Tour de France? On the same day I heard the Requiem I also viewed the first episode of the new documentary ‘Lance’ (https://www.youtube.com/watch?v=mWE4DnnCuvM ). This covers his early career, including his diagnosis with grade IV testicular cancer, with metastases in his brain (among other places). Armstrong’s brush with death is also described in his earlier autobiography It’s Not About The Bike. At that point in his life Armstrong was acutely aware of his mortality, not surprisingly when faced with brain surgery, and a possibly early death. Who knows what effect that had on his subsequent decisions – for example, to marry fairly soon afterwards, and later to take performance-enhancing drugs

Armstrong is not alone. Many illness narratives reveal the mental changes that can result from surviving a close encounter with death. For some people, an acute awareness of mortality, whether as a result of the losses during the Covid-19 pandemic, or after a severe illness, may become less acute in time. For others, the realisation that death will be soon, provokes profound change. It can release them from ordinary concerns and allow them to live more fully. That, at least, is the experience for Rachel Clarke, palliative care doctor, who has chronicled her own father’s actions and moods, once the possible cancer treatments had been exhausted (Clarke 2020).

An acute awareness of human mortality also pierces through the operatic drama of Verdi’s Requiem. The terrifying ‘Dies Irae’ is perhaps the best known movement, but the heartfelt prayer for peace after the inevitability of death is Verdi’s final and pervading message.

Armstrong, L (2001) It’s Not About the Bike: My Journey Back to Life, London, Yellow Jersey Press

Clarke, R (2020) Dear Life: A doctor’s story of love and loss, London, Little Brown

COVID-19: will it change attitudes to chronic fatigue?

There are a minority of the people who have had COVID-19 who complain of on-going symptoms for weeks and months after the initial infection. Discussion forums and blogs have sprung up to describe people’s day-to-day responses to a new and strange disease, partly for mutual support, and partly to explain to others what they are experiencing. In a BMJ blog a Professor of Infectious diseases has described his own early COVID symptoms – loss of smell, tightness in the chest and severe fatigue (Garner 2020). Professor Paul Garner was then surprised to find that he did not immediately recover. Instead the symptoms went on for weeks: ‘muggy head; acutely painful calf; upset stomach; tinnitus; pins and needles; aching all over; breathlessness; dizziness; arthritis in my hands; weird sensation in the skin with synthetic materials. Gentle exercise or walking made me worse—I would feel absolutely dreadful the next day.’

He struggled with his colleagues’ and family’s suspicions of a psychological element to the on-going fatigue. He was convinced that this was not just a post-viral syndrome, but rather the disease itself. Others with COVID got in touch to say that he was not alone – they had similar stories.

However, he also received comments from people with pre-existing chronic fatigue syndrome, whose basic message was ‘now you know how we feel!’ (Harding 2020). Shattered by any exercise, doubted by health professionals who suspected a psychological element, and plagued by a plethora of vague neurological and autonomic symptoms, these people have often been crying out for months and years for someone to listen to their stories.

What happens in rehabilitation for people like this? In accordance with the evidence of the PACE trial (White et al. 2011) some physiotherapists have tried to apply Graded Exercise Programmes to people with Chronic Fatigue Syndrome, but with varying success. Some researchers (as well as the Chronic Fatigue Syndrome lobbyists) have cast doubt on the PACE trial’s findings (Matthees et al. 2016). Some other physiotherapists have investigated the qualitative experience of fatigue among people with neurological conditions such as Charcot-Marie Tooth disease, post-polio syndrome, Multiple Sclerosis and Guillain-Barre Syndrome (e.g. Ramdharry et al. 2012).

There are also published narratives by people with on-going fatigue symptoms after neurological or viral conditions (e.g. Duerden 2018). Often these reveal some discontent with rigid conventional physiotherapy approaches, and instead report their experiments outside the health service as they cope with continuing limitations.

In the aftermath of COVID post-viral syndromes will, I am sure, become more common. Physiotherapists will no doubt meet people with on-going post-viral symptoms in their clinics. Let’s make an effort to listen carefully to their stories, and to treat each person as an individual.

References:

Duerden, Nick (2018) Get Well Soon: Adventures in Alternative Healthcare, London, Bloomsbury

Garner P (2020) https://blogs.bmj.com/bmj/2020/05/05/paul-garner-people-who-have-a-more-protracted-illness-need-help-to-understand-and-cope-with-the-constantly-shifting-bizarre-symptoms/

Harding L (2020) ‘Weird as hell’ The Guardian, 5 May 2020  https://www.theguardian.com/world/2020/may/15/weird-hell-professor-advent-calendar-covid-19-symptoms-paul-garner#maincontent

Matthees A, Kindlon T, Maryhew C, Stark P, Levin B (2016) A preliminary analysis of ‘recovery’ from chronic fatigue syndrome in the PACE trial using individual participant data http://www.virology.ws/wp-content/uploads/2016/09/preliminary-analysis.pdf

Ramdharry GM et al. (2012) Exploring the experience of fatigue in people with Charcot-Marie Tooth disease, Neuromuscular Disorders 22: S208–S213

White PD et al. (2011) Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial The Lancet 377(9768): 823-836

PPE and communication

COVID-19 has changed interpersonal interactions – every person we meet is a possible vector of infection, and hence the new technology of ‘social distancing’, ‘facial coverings’ and PPE. But these precautions have their own consequences in altering interpersonal communication. Masks make our spoken language indistinct, and also obscure our facial expressions. Those who are deaf or hard of hearing are already missing the assistance of lip-reading. So perhaps we need to revisit communication skills with our physiotherapy students.

Illness narratives abound with stories of clinicians’ body language – its importance where language is not possible, and even its truth compared with wordy deceit.

Memoirs about and by people with aphasia and language problems show that aphasics seem to become more alive to body language and the meaning that lies behind facial expressions. John Hale was already an excellent actor and mimic before stroke abolished his language, but his wife Sheila observed how much more sensitive he became after his stroke to gesture and tone of voice. ‘Those with reduced comprehension of language are able to understand the gist of what is being said, and quickly become extremely sensitive to tone of voice and body language’ (Hale 2003 p.160). In John Hale’s case his inability to access language with others seemed to create a more direct form of emotional connection. ‘There is something about his eyes and voice and body language that seems to speak more directly to their hearts than all the words with which he charmed and taught throughout his speaking life’ (Hale 2003 p.220).

The temptation for those with language is to assume that those without have a severe cognitive disability. And that assumption is evident in tone of voice and body movements, as much as in the words we use. Douglas Ritchie tells of how enraged he was by a nurse who spoke to him in childish language. He also reports how the doctor examined him as he was about to leave the acute hospital: ‘he looked at me rather curiously and then with a nod, as benign as mine was fierce, said, ‘That’s right, that’s right.’ I refused to look at him any more, and the doctor, not noticing or, as I thought, assuming that I was as mad or as simple as he considered me to be, talked to my wife….’ (Ritchie 1974 p.49).

Jean-Dominique Bauby’s locked-in syndrome made communication with words very difficult. Many of his carers were unwilling to use his painstaking method of communication through eye-blinks and alphabet recitation. He makes some very caustic comments about lazy health professionals, such as the ophthalmologist who comes to tape one of his eyes: ‘I fired off a series of questioning signals with my working eye, but this man – who spent his days peering into people’s pupils – was apparently unable to interpret a simple look. He was the very model of the couldn’t-care-less doctor, arrogant, brusque, sarcastic…’ (Bauby 1997 p.61).

Mismatch between words and body language is the theme of Oliver Sack’s ‘The President’s Speech’, one of the vignettes in The Man Who Mistook His Wife for a Hat. The aphasic patients found the politician’s artificial body language and gestures laughable, although those not verbally challenged might not notice the mismatch, diverted as we are to the meaning of the words. Sacks went on to say “that one cannot lie to an aphasiac. He cannot grasp your words, and so cannot be deceived by them; but what he grasps he grasps with infallible precision, namely the expression that goes with the words, that total, spontaneous, involuntary expressiveness which can never be simulated or faked, as words alone can, all too easily.” (Sacks 1985)

Perhaps we should start miming classes for our students – essential clinical skills in the era of COVID-19.

References:

Bauby, Jean-Dominique (1997) The Diving-Bell and the Butterfly (translated by Jeremy Leggatt), London, Fourth Estate

Hale, Sheila (2003) The Man Who Lost His Language, London, Penguin

Ritchie, Douglas (first pub. 1960, 2nd ed. 1974) Stroke: A Diary of Recovery, London, Faber and Faber

Sacks, Oliver (1985) ‘The President’s Speech’ in The Man Who Mistook His Wife For A Hat, London, Picador

Sources of inspiration

Modelling matters. The strongest inspiration comes from your peers. So it doesn’t matter what the doctors or physios or nurses say – the person facing a mountain of rehab will never be truly convinced by them. What he or she needs is inspiration. And that often comes from meeting someone who has already travelled the route they are going – and reached a destination. For Jeff Bauman, being a bilateral above knee amputee was bad. Only when he saw soldiers with leg amputations walking into his rehab gym did he really believe that he would walk. Only when he met fellow amputees and Costco employees – one of whom was back dirt-riding on a motorbike – did he believe that a happy life was possible after losing your legs.

Peers that inspire, people who have gone through what you are going through and emerged the other side, fellows that have survived, these emerge from the illness narratives as priceless during the hard work of rehabilitation. Helen Rollason was exceptional in deriving inspiration from all kinds of people, all inspiring in their own way, rather than solely from people with cancer like hers. She was able to relate to Christopher Reeve, who she interviewed, and children with disabilities that she met through her journalism.

But for others the similarities of experience are critical. The stories by people with paraplegia, whose lives have often been transformed in a traumatic moment, and who face a long hard slog to get some function, often tell of the other people with SCI who inspired them. Claire Lomas describes the lift she felt after meeting Matt Hampson, who was getting on with life and managing his charity rather than wallowing in his tetraplegic limitations. Guillain-Barré syndrome had left Holly Gerlach in a hospital ICU, vulnerable and in pain, when she was lifted by a visit from someone who had spent 4 months in exactly the same hospital ICU. He was evidently an inspiration to work harder, and visible evidence that this was not for ever. Gail Hicks tells of an inspiring letter from a fellow Australian, an MP who had like her lost both legs, which was important in her rehabilitation after the 7/7 tube bombings.

Professionals should not underestimate the value of such meetings – in person or by letter. Time and resources spent facilitating them is very well spent.

References:

Bauman, Jeff & Witter, Bret (2014) Stronger, London, Blink Publishing

Hicks, Gail (2007) One Unknown, London, Rodale International

Lomas, Claire (2014) Finding My Feet, Melton Mowbray, Claire Lomas Books

Rollason, Helen with Caunt, John (2000) Life’s Too Short, London, Hodder & Stoughton

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