Words cast spells: and why this matters in Parkinson’s

In this, the first of three blogs, Alison Williams explores the impact that quality of life assessments can have on Parkinson’s patients, the values informing those measurements, the words that are used, and how those words can invoke the ‘nocebo effect’ – what one colleague calls ‘the evil twin of the placebo effect’.

Any medical treatment has two elements – the specific effect of the treatment itself (whether pharmacological or non-pharmacological), and the non-specific effect upon the patient of perceiving that they are undergoing treatment (Colloca & Benedetti 2005). Beneficial nonspecific effects are well known as placebo effects; the harmful, nocebo, nonspecific effects are less well known (Häuser et al 2012).

Peter Druker said, “What gets measured, gets managed”. There is a subtext to this, which reads:” Too often we value only what we can measure or believe we can measure.”

As a person with Parkinson’s (PwP) involved in clinical research projects, my quality of life is frequently measured before and after the intervention.  The most often used assessment – the ‘gold standard’ – is the PDQ39, the Parkinson’s Disease Questionnaire, which measures Parkinson’s disease in its different aspects (motor and non-motor symptoms), sometimes accompanied by Beck’s Depression Inventory, which measures depression.

Parkinson’s and depression may be valued by the researchers, but neither are valued by me.

Measuring Humanity, the phrase and the concept behind it, was like water in the desert. The idea that the effectiveness of a therapeutic intervention could be assessed by what it added to my life, how it fostered and augmented my humanity, made sense, especially in the context of Parkinson’s, a progressive neurodegenerative condition for which there is, as yet, no cure (the drugs help me manage my symptoms).

The past six and half years since diagnosis have been a battle to reclaim my “sense of being a person (rather than a patient)” (Houston 2015:31) and avoid “living a life that is diminished, whether by the disease itself or by others’ responses to it” (Frank 2013, xvi quoted Houston 2015:31).  It has also been a battle to avoid diminishing my own life, by absorbing messages of lack or of deficit.  I return again and again to what the poet Robin Morgan said in her TED talk (2015) “I am not diminished by my Parkinson’s, I am distilled by it. And I very much like the woman I am distilling into.”

Messages of doom are all around.  Not long after my diagnosis I had a general needs assessment, and told the nurse “I don’t need OT (Occupational Therapy) yet.”  She shook her finger at me and said fiercely: “YET is a word we do not use!”  Every day since, I mentally thank her for that wakeup call. I had, without realising it, bought into a recurring Parkinson’s narrative of “invidious creep”.

I meet PwP in their first years post-diagnosis who believe that once they can no longer do something that is it – they have lost that capacity for ever; and the belief plays out as a self-fulfilling prophecy. Yes, Parkinson’s is, indeed, a silent progressive condition, but using the emotive language of the horror film risks invoking a powerful nocebo effect, ignoring, or worse, belittling, what we, as individual PwP, can do to slow or even reverse symptoms. There are many approaches that can restore functionality, including exercise, mental challenges, community support and volunteering. Things I couldn’t do two years ago I can now manage without thinking about them – my left/right coordination has returned, I can keep accurate time when dancing, my husband has to walk fast to

keep up with me instead of slowing his pace; my brain is clearing and even my memory is improving. What I can do today, I can do tomorrow, I tell myself.

But if PwP and their family and carers believe and buy into the hopelessness of “invidious creep”, they are less likely to engage with the activities that can make a difference – getting involved in the local Parkinson’s community, volunteering to talk to students and researchers, and accessing “the drug that is available to everyone – exercise” as Professor Giovanna Mallucci put it at the 2018 Edinburgh Parkinson’s Lecture.  Billy Connolly in his recent television documentary ‘Made in Scotland’ talked about losing one skill after another.  Contrast Connolly’s fatalism with Paul Mayhew-Archer’s activism and his show ‘Incurable Optimist’. The title says it all.

I want my quality of life to be assessed by what I, and many other PwP, value. Measuring Humanity’s indicators made so much sense when I encountered them: happiness, access to resources, healthy environment, culture, empathy, helpfulness, interpersonal relationships, optimism, physical health (yes, of course it is important), self-determination, spirituality, personal meaning, and trust.

We should be measuring what we value.

In the next blog I will look at the development of quality of life assessments; the changing context (from medical model to patient-centred); and the impact that patients’ self-reporting can have on the very thing they are trying to measure.  I will also look in more detail at Measuring Humanity’s asset-based indicators and contrast them with the PDQ39’s deficit model, and with Sen’s capability-based measures (Canoy et al 2015).

The third blog will, I hope, be informed by readers’ comments.  Please contribute your thoughts, experiences, ideas that have been sparked by the blogs, and we can see what happens when we bring them all together…..

References

Arthur, F. (2013) The Wounded Storyteller: Body, Illness and Ethics, 2nd ed. Chicago: University of Chicago Press.

Beck, A. T., Epstein, N., Brown, G., & Steer, R. A. (1988). An inventory for measuring clinical anxiety: Psychometric properties. Journal of Consulting and Clinical Psychology, 56(6), 893-897.

Canoy, M., Faber, M.J., Munneke, M., Oortwijn, W., Nijkrake, M.J. and Bloem, B.R.  (2015) Hidden Treasures and Secret Pitfalls: Application of the Capability Approach to ParkinsonNet.   Journal of Parkinson’s Disease 5 (2015), pp: 575–580.

Colloca, L. & Benedetti, F. (2005) Placebos and painkillers: is mind as real as matter?  Nature Reviews Neuroscience volume 6, pp: 545–552.

Hauser, W., Hansen, E., Enck, P. (2012) Nocebo phenomena in medicine: their relevance in everyday clinical practice. Dtsch Arztebl Int. 2012 Jun; 109(26): 459-65.

Houston, S. (2015). Feeling Lovely: An Examination of the Value of Beauty for People Dancing with Parkinson’s. Dance Research Journal, Volume 47, Number 1, April 2015, pp. 26-43.

Mallucci, G. Prof. (2018) https://www.edinburghparkinsons.org/the-edinburgh-parkinsons-lecture-2018/.

Mayhew-Archer, P. (2019) Incurable Optimist UK Tour, https://www.ents24.com/uk/tour-dates/paul-mayhew-archer.

Morgan, R. (September 2015)  https://www.ted.com/talks/robin_morgan_4_powerful_poems_about_parkinson_s_and_growing­_older

PDQ39   https://innovation.ox.ac.uk/outcome-measures/parkinsons-disease-questionnaire-pdq-39-pdq-8