Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's

Cecil Todes, “Shadow Over My Brain”

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AmazonCecil Todes (1931-2008), a leading child psychiatrist, was 39 when he was diagnosed with Parkinson’s. One of the first indications of his condition was the apparent malfunction of his cherished automatic watch (this sounded very familiar); he sent it back to the manufacturer twice before settling on the solution of wearing on his right wrist, where it worked perfectly. Much as in my own case, this happened a few years before Parkinson’s was diagnosed and Todes eventually made the same realisation that I did: there was nothing wrong with the watch; it was the arm that was at fault, lacking the requisite amount of movement to keep the watch going.

Over the next 20 years – the period covered by this book – Todes sought a cure for Parkinson’s. He used his medical connections to locate new treatments and endeavoured to sample many at an early stage of their development. His attempts to cure himself often seem desperate; how much of this is an understandable desire to be rid of Parkinsonism, and how much is due to an expectation that medical science should be able to cure it is unclear.

Todes also sought a reason for his affliction. In Shadow Over My Brain, he attempts to tie the condition to personality, specifically to early loss (his own mother died just before his seventh birthday), with an underlying genetic predisposition. This would be a psychosomatic cause for Parkinson’s (“psych” = mind, “soma” = body; psychosomatic, in this context, means that the mind is contributing to an illness of the body).

Writing about his own experiences does not seem to have come easily to Todes. His prose is occasionally a little stiff, but there is never any cause to doubt what he says. He is always frank and believable. His experiences offer an insight into the nebulous area where a doctor is also a patient, and so into the doctor-patient relationship in general. Do doctors make good patients? Is it easy for other doctors to treat a doctor-as-patient? Todes kept working for many years after his diagnosis; it seems that other doctors found it difficult to relate to him in his role of patient-as-doctor.

Todes does make one point that stands out in my mind. He claims that working (in his case as a doctor) helped him face and cope with his Parkinsonism. I would be inclined to agree with this. My limited experience suggests that keeping oneself engaged does help enormously.

This is, I think, an important book. (Oliver Sacks, who provides the effusive introduction and who also mentions Todes in the preamble to Awakenings, also thinks it is an important book.) Todes’ clinical experience leads him to describe all aspects of his condition as they occur in a dry, succinct manner; he does not stint and he does not bury then under unnecessary detail. His courage in facing all that Parkinson’s has thrown at him and in attempting novel cures, is vast. Although Todes does touch upon the subject of depression (a common non-motor symptom in Parkinson’s Disease), the book is not, on the whole, depressing; Todes contrives to inject a genuine message of hope.

The book itself is not long (my hardback edition runs to 158 pages excluding the bibliography) and it has a single, simple narrative.  It is not, however, an easy read; there is some thinking to do long the way, and there are one or two medical concepts to understand (although this is emphatically not a scientific discourse; it is a personal story).

Shadow Over My Brain: A Battle Against Parkinson’s Disease is out of print, but second hand copies seem to be readily available at Amazon and elsewhere.


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