David Beresford 

A leap in the dark

Exactly two weeks to go before they start drilling into my skull. It reminds me, inevitably, of Samuel Johnson's observation that a fortnight's anticipation of hanging concentrates the mind wonderfully.
  
  


Exactly two weeks to go before they start drilling into my skull. It reminds me, inevitably, of Samuel Johnson's observation that a fortnight's anticipation of hanging concentrates the mind wonderfully. It is perhaps fortunate that Johnson was not born in modern times, suffering as he apparently did from what we would see as a neurological defect. Johnson could not have known it because the malady was only identified as such in the 19th century, but he had a series of tics and habits since identified as Tourette's syndrome. I know little about the condition and nothing about its treatment. But doubtless pharmacologists have designed a profitable line of attack. And along with the bottle of pills will come a closely wrapped pamphlet listing possible side effects capable of dimming even a Johnsonian mind.

In the 10 years I have been trying to deal with Parkinson's I have come to nurse a loathing for drugs, particularly those affecting the brain - from the once miraculous L-dopa to the newly miraculous cannabis. The mind, I am beginning to appreciate belatedly, is an individually unique balance of chemicals liable to be rudely upset by prescriptions designed, impossibly, to serve the mass of humanity, or at least the large numbers sharing an identifiable malady.

The fault appears to lie not with drugs themselves - nor, for that matter, specifically with doctors - but with the medical industry as a whole and its depersonalisation of patients. It is a process in tune with the modern age - the industrial's worship of standardisation, the digital's preoccupation with copying. Diagnoses are nowadays more about classification than investigation. Patients are pegs of a variety of rectangular proportions being hammered into a series of differently sized square holes.

"Side effects" and "complications" are bits and pieces of individuality that happen not to fit. The observations are commonplace. It is self-evidently the stage our species has reached and is reflected in other aspects of social organisation in which, for example, a passenger too large to fit a "standard" seat is ostracised by the airline industry on grounds of efficiency and profitability.

But things are, I suspect, going to change radically, at least where the practice of medicine is concerned. I have been hugely privileged by the quality of medical expertise I have had at my service in the decade since I developed Parkinson's. They all boast, or boasted, considerable minds. The man who diagnosed it has since died, his passing marked by eulogies in the British broadsheets. My condition has been monitored here in South Africa - where I have been marooned by the disease - by a professor of international reputation. Major decisions, such as my recourse to brain surgery, are double-checked with a British consultant whose name is a byword in neurological circles.

The surgical team with whom I have a date next month is led by the men who pioneered the procedure that is fast becoming a standard treatment for advanced Parkinson's all over the world. But, for all that, the experience of the past 10 years has convinced me that the time has come to reconsider the adage that he who would doctor himself has a fool for a physician. With access to the cyberworld, he or she is the fool who does not do at least a little self-doctoring.

The point was first brought home to me when I mentioned an apparent breakthrough I had read about on the internet to the South African professor. He asked me to email any other research developments I came across. I suspected sarcasm, but he was being serious. No specialist can hope to keep up with the net.

In the main, however, it is not access to online news reports and journals that is having an impact on the doctor-patient relationship, but the proliferation of disease-specific self-help groups. A dive into these cyber-communities brings one an appreciation of the resources of intelligence - not to mention pain and courage - which generally go unrecognised in everyday life.

Exchanging information through email, mailing lists and websites, building a collective expertise and - perhaps above all - providing reassurance and encouragement based on personal experience, the net appears to be bringing a new dimension to medicine. The dynamic behind it would seem to be patients and those close to them - driven by their own imperatives of discomfort, pain and the prospect of death.

 

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