Parkinson’s Disease is much more than a simple motor disorder that causes tremor, stiffness and difficulties in initiating movements. Fifty years ago Oliver Sacks observed many of the non-motor symptoms in his ‘sleepy sickness’ patients (and recorded them in Awakenings). Since then there have been considerable advances in knowledge about PD. Most of Jon Palfreman’s book is about these advances, rather than a simple memoir of his own experience of Parkinson’s. In this regard his memoir echoes the many other books which incorporate an investigation of a condition alongside personal reminiscence. Examples are Sutherland’s Breakdown, Wolpert’s Malignant Sadness, and Solomon’s Noonday Demon which all devote much space to clinical theories about the pathology and treatment of depression, alongside the authors’ personal witness. Bella Bathurst’s memoir explains a great deal about the sense of hearing and the treatments for deafness, as well as describing her own experience.
Jon Palfreman is a science journalist who has previously written articles and documentaries about cases of drug-induced Parkinsonism, so it is ironic that he should now find himself diagnosed with the condition. His well-researched book presents for the lay reader the recent detective work which is revolutionising our thinking about Parkinson’s Disease.
Is this an illness narrative, for there is very little – on the face of it – of Palfreman’s own experience in Brain Storms? But it is, in the sense that his own hopes and fears are threaded through the book. Because Palfreman is like most people with a long-term degenerative neurological condition: fearful for the future, and anxious to know about any advances that might provide a way out of the diagnostic sentence. In this he is like Simon Fitzmaurice in relation to MND, or Christian Donlan in relation to Multiple Sclerosis, or Wendy Mitchell with her early stage dementia. There is a frenetic search of the literature, a willingness to chase down the experts wherever they are, and to volunteer for research trials of new unlicensed treatments in the hope of a cure.
Brain Storms covers the history of PD and its treatments, from first observations in the ancient world, through the work of James Parkinson and Charcot to define it. The twentieth century saw the identification of Lewy bodies in critical parts of the Parkinsonian brain, and the discovery of the neurotransmitter dopamine and its role in the basal ganglia. New treatments to replace dopamine through drug therapy has had some success, but Palfreman describes through his experience and others how this can be limited. Deep brain stimulation for tremor is described. Exercise is lauded as both an underestimated protecting agent, and as a treatment. Revolutionary advances since 2000 have aligned PD with other genetic disorders of protein synthesis, with the discovery of alpha-synuclein and amyloid plaques, reminiscent of the Tau tangles in dementia. While such discoveries raise hope, they have also prompted the realisation that the basal-ganglia motor symptoms of PD – the movement symptoms that are so well known like tremor, rigidity and slowness – are probably very late manifestations of a long-standing protein disorder which has already caused much damage in the brain. These changes are sometimes hinted at by scarcely noticed symptoms like loss of smell or slight changes in bowel habit. This is a complex story, the mood of which is partially lightened by the hope that phage and genetic therapies may be possible to tackle protein disorders like PD, dementia, and prion mediated conditions like new-variant CJD.
The illness-narrative may be only a small part of this book, but as a lay introduction to Parkinson’s Disease and the science behind current and possible future treatment it is invaluable. And the lay introduction is all the better for Jon Palfreman’s expressions of his own difficulties, and his hopes and fears for the future.
Jon Palfreman (2015) Brain Storms: the Race to Unlock the Mysteries of Parkinson’s, London, Rider