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Shouting from far away: three poems about living with speechlessness
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  1. Rory JQ Barnes1,
  2. Jason D Warren2
  1. 1Specialist Cognitive Disorders Clinic, National Hospital for Neurology and Neurosurgery, Queen Square, London, UK
  2. 2Dementia Research Centre, UCL Queen Square Institute of Neurology, London, UK
  1. Correspondence to Dr Jason D Warren, Dementia Research Centre, UCL Queen Square Institute of Neurology, London, WC1N 3BG, UK; jason.warren{at}ucl.ac.uk

Abstract

We present three poems written from personal experience of living with primary progressive non-fluent aphasia (primary progressive apraxia of speech). The poems provide a window on this illness ‘from the inside’, and vividly illustrate how intellect and inner life may survive strikingly intact, even after speech is lost.

  • COGNITION
  • DEMENTIA
  • SPEECH

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RJQB turned to writing after a long career as a solicitor. In 2016, at the age of 74, he began to experience difficulty articulating words when conversing. This deteriorated insidiously, and 3 years later, he was diagnosed with primary progressive non-fluent aphasia. His illness has been characterised chiefly by severe speech apraxia, which has largely destroyed his ability to talk. His speech is now limited to sparse, barely intelligible words produced only with considerable effort and there is an accompanying apraxia of other orofacial movements. He currently uses an iPad with a voice-synthesising app to communicate in person. His typing is clumsier, and he now makes some spelling mistakes, as well as occasional binary reversals (‘yes’/‘no’ confusions).1 However, since his diagnosis, he has continued to produce poems describing his experience of living with the condition, three of which are below.

‘Primary progressive apraxia of speech’ can be remarkably pure, leaving many aspects of language and general intellect unscathed. Rory’s case is a particularly striking illustration of this syndrome, which presents something of a nosological dilemma.2 3 A neurologist may see it as the harbinger of atypical parkinsonism on the corticobasal degeneration—progressive supranuclear palsy spectrum.3 A neuropsychologist might wonder if it qualifies as an aphasia at all.3 4 A neuropathologist will generally characterise it as a primary tauopathy.5 But to convey the bane of speechlessness after a life’s work trading in words requires a poet.

The last sweet

Do you remember sucking the last sweet,

Long in the past, making it last

As long as possible?

Now is the time to suck away

To savour the juice of life

To run your tongue over the texture

To tease out the flavour

To let the sweetness slide down your throat without swallowing.

Cheating time to let the seconds chime

Concentrating on what you’ve got

Not what you’ve lost:

The less you have

The more precious it is.

An evening out

Around the table

I clear my throat

And everyone is silent

To hear my words.

I must take care

To say something worth their effort

And not to make noises

That silence the conversation

When I have nothing to say.

And pray they will understand my speech

And not pretend they have

When they have not.

Fifi

Fifi is my granddaughter

Aged nine and clever

She called her favourite teacher

Long tempered.

I was looking forward

To arguing with her

When she was grown and beautiful

And accomplished.

Now I cannot talk

I have missed the boat

And must find another role

But I am still her grandpa

And I can write her poems

She can read instead.

Rory Barnes

August – November, 2021

Data availability statement

No data are available.

Ethics statements

Patient consent for publication

Ethics approval

This study involves human participants and was approved by UCL/UCLH Joint Research Ethics Committee. Participants gave informed consent to participate in the study before taking part.

Acknowledgments

The authors thank Dr Anna Volkmer for helpful insights.

References

Footnotes

  • Contributors The authors have jointly drafted and revised the paper.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; internally peer reviewed.

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