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He who hesitates is lost

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approaches to dementia care, communication
Handwriting

I’ve written recently about some of the communication challenges of Huntington’s disease.  Here is another.  My encounters with a Huntington’s patient frequently went like this:

Doctor: ‘How are you?’

Patient: [no response]

Doctor: ‘Did you come on the bus?’

Patient: ‘Not bad’

Doctor: ‘Is your swallowing ok?’

Patient: ‘No, my daughter brought me’

In such conversations I did not imagine that language had been in some way dammed up, as it sometimes seems to be following a stroke.  One can sense the frustration of a stroke survivor who knows what she wants to say but can’t say it.  In Huntington’s,  by contrast,  it is other people who get impatient, while the affected individual often seems unconcerned.  Huntingtonian slowness is not of language, or of speech formation, but of thought. In medical terminology slowness of thinking is bradyphrenia, which  adds a touch of Greek dignity to the problem (brady- , slow and phren- , mind) and at the same time acknowledges that this is a distinct impairment rather than a sign of general cognitive failure.   It is entirely possible to be slow but sharp.

Timing is crucial to human connection. The slightest lapse between lip movements and speech, for example,  makes a video difficult to watch.  Our motor skills each have their characteristic time signatures, as every tennis player knows. The image above shows that handwriting becomes strangely distorted when you try to produce it bit by bit, slowly.   The same constraints apply to gestures and also to speech acts.  If you plan to dig someone playfully in the ribs, for example, you must act rapidly or not at all.  The spontaneity of human dialogue is soon lost if it is slowed down, as sometimes happens across a mobile phone network, or during a broadcast relay.  The conversational thread gets more and more tangled with each pause, and jokes fall flat because a punchline will not be funny if it is held back for even a moment. Everyone feels frustrated when responses seem hesitant,  and there is a strong urge to disconnect.  The  instinct to disengage is often provoked, in my experience, by the silences and mistimed responses  of someone with Huntington’s.  We long to give up, and we excuse ourselves with the idea that it must be impossible to talk meaningfully with a person who ‘has’ dementia.  

If we are aware of the effects of conversational slowing we are more likely to attend to the other person’s pace. Two people must always adapt to each other in dialogue, of course,  but there are situations where we need to take a brain as well as a person into account. An inspired American nurse called Jim Pollard [i],  who has been a close observer of Huntington’s for many years,  gives some useful tips in his booklet, ‘Hurry Up and Wait’[ii].   At times,  the brain masks the person.   Your half-speed signature seems deceptively child-like, as does the slowed-down speech- production of cerebral palsy and multiple sclerosis. 

The most fundamental requirement in a relationship is curiosity, which is all too easily extinguished by a label such as Huntington’s.  During the 1920s epidemic of encephalitis lethargica, patients stood or sat for hours in statuesque silence (see my  paper ‘On Doing Nothing’[iii]) and bradyphrenia was said to be one reason for this. At the time, the flamboyant neurologist and psychoanalyst Smith Ely Jelliffe quoted the pre-socratic philosopher Protagoras, who wrote that ‘it is only when we do not act at all that we are able to live our own private life apart, and to differ utterly from all others’[iv].  However difficult it might have been to penetrate the inscrutable silence of a person with a Huntington’s, I was always intrigued by a sense that something was there for me to understand.

 

References

[i] See https://vimeo.com/270056128

[ii] Hurry Up and Wait: http://www.lulu.com/gb/en/shop/james-pollard/hurry-up-and-wait/paperback/product-3610588.html

[iii] Ward CD.  On doing nothing: descriptions of sleep, fatigue, and motivation in encephalitis lethargica. Movement Disorders,  2011;  26: 599-604.

[iv] Dialogues of Protagoras. See F. C. W. Schiller, Studies in Humanism, Macmillan 1907 p 319

 

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