Frank Ormsby’s Parkinson’s

Belfast poet Frank Ormsby is interviewed about his experience of Parkinson’s Disease. Gentle, downbeat and precise in his speech, he describes the tremor in his hand, and how it varies during his moods or with stress. He is humorous too, telling jokes against himself and his Parkinson’s walk, and recalling Billy Connolly jokes about his PD.
The time to undo parcels or tie his laces is expanding. He can no longer drive. And this causes a separation between him and those people who are moved to offer help. He experiences visual hallucinations that people the corner of his field of … Read more...

The Boy with the Incredible Brain – Daniel Tammet

What is autism and so-called ‘autistic spectrum disorder’? It is a question that is difficult to ask of many people with autism because of their acute linguistic and communication difficulties. On the other hand, will we get a useful answer by asking atypical individuals with ‘high functioning autism’ like Daniel Tammet, John Elder Robison and Temple Grandin, who are not only independent but able to write books and communicate about their perspective? Are their views representative of this group in society?

Daniel Tammet is on many measures an exceptional individual. He is a savant with exceptional numerical and memory skills. … Read more...

Acceptance – again….

If acceptance is hard to describe and recognise after one-off life-changers like spinal cord injury or stroke, what does it look like after diagnosis with progressive diseases like Multiple Sclerosis, or MND, or Parkinson’s Disease?

The shifting currents of acceptance and denial often start before a neurological diagnosis. When do odd symptoms like pins and needles become part of a pattern which requires investigation, and how long do you ignore them? When confronted by resting tremor in his little finger Michael J Fox initially refused to acknowledge its importance. Christian Donlan’s first symptoms of MS were a clumsy missing of … Read more...

Christian Donlan – The Unmapped Mind

What a curious journey! Journalist Christian Donlan casts himself as an explorer of the brain in the aftermath of getting diagnosed with Multiple Sclerosis. He commits to a series of expeditions in order to learn more about dealing with a neurological disease, only to discover that it was all an avoidance strategy. Or was it? Nothing is ever certain for long as he investigates the shifting sands of MS and his reactions to it.

For sure, Donlan expands his (and our) knowledge of the brain, and myelin, and scans, and the history of MS. There is a brief exposition of … Read more...

Untouchable

This is billed as a comedy, but it raises great questions about what someone might want from a carer, what makes a carer relationship work, and the ethics of power relationships within a carer relationship.

Almost by accident, black ex-con Drees becomes a live-in carer for Philippe, a wealthy cultured man with a tetraplegia. Drees’ main attraction for his employer seems to be a complete lack of pity. In addition Drees’ streetwise way of dealing with the secretary, with the neighbour that parks across the gates, with the policemen chasing them on a speeding escapade, and even his alternative dancing … Read more...

Acceptance and ‘denial’

Acceptance is a slippery word. In the stories of illness, and recovery from bodily disaster, people use it in different ways and with shifting accents. I am going to point up some of these here.

Some people regard acceptance as essential in order to be able to move on from the present. Young rugby enthusiast Henry Fraser is one of these. His cervical spinal cord injury was a complete injury and at the level of impairment his loss was unequivocal. It was clear which muscles had lost their innervation, and would remain so, and which muscles Henry needed to retrain. … Read more...

Notes on Blindness

How do you communicate to a seeing audience the experience of losing sight using the medium of video? Notes on Blindness makes a fantastic and memorable attempt at the impossible. John Hull went blind after a series of eye operations, finally losing his sight at the age of 45. He recorded his comments on what adult-onset blindness is like between 1983 and 1986, three years after the last eye operation in 1980. Actors perform brilliantly to a sound track comprising extracts from John Hull’s original tapes and extracts from some more recent recordings by him and his wife. (John Hull … Read more...

Oliver Sacks – Awakenings

This is an early classic of the ‘illness narrative’ literature, albeit one written by a clinician. Twenty detailed case studies form the central section of this book, describing the use in the late 1960s of a new miracle drug for people with post-encephalitic Parkinsonism. But these are not dry clinical case studies in which signs and symptoms are listed and described, and then synthesised to form predicted rules of human response to a drug. Instead, the case studies are rich descriptions of historical people, whose words, individuality and priorities colour the pages. Sacks paints the manifold presentations of the ‘sleepy … Read more...

Helen Stevenson – Love Like Salt

Mothers and daughters have intimate and sometimes fraught relationships. But how are these affected by illness or diagnosis of terminal disease? Helen Stevenson has written a highly individual and personal account of her experience as mother of Clara, who has Cystic Fibrosis. It is an idiosyncratic story: even the geography is unusual, featuring a move to rural southern France, memories of her own up-bringing near Doncaster, and a move back to Somerset. And it often takes an unusual pensive tone, with an allusive literary voice reflecting the writer’s background as a translator, married to an academic specialising in Petrarch. But … Read more...