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Parkinson's Disease: A Self-Help Guide for Patients and Their Carers.
  1. CHRISTOPHER WARD

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    Parkinson's Disease: A Self-Help Guide for Patients and Their Carers. Edited by m jahanshahi and cd marsden. Published by Souvenir Press, London, 1998. ISBN 0-285-63317-1.

    Information is a vital tool for patients wishing to gain more control over their lives. Different sources of information will suit different patients, and this book is a useful addition to the range of available resources. Its strength comes from the authors immense clinical experience. Its weakness is that it is too hospital centred. A formidable fist of potential investigations is described (including PET). Idiopathic Parkinson's disease is described as a diagnosis of exclusion. which will certainly alarm the neuroradiologists in my health district.

    Patients are given invaluable forewarning of conditions in a late 20th century British hospital: “Don't expect to be seen at the time specified on the appointment letter...”; “You may see a different doctor each time”; “The neurologist may know very little about the individual's life circumstances and about him or her as a person”. Some advice about how to complain would have been invaluable. Readers are advised that “You may be presented to a large number of doctors in the course of a ‘clinical presentation’”: but there is no mention of multidisciplinary case conferences, home visits with a therapist, or hospital discharge planning.

    The limited information about community care arrangements is dated, making no mention of care management, or of the statutory right of carers to have their own needs separately assessed. There is an invaluable and fairly comprehensive list of non-statutory resources, although much more could have been said about management of difficulties in car mobility. Oddly, wheelchairs are not in the index and get scant attention in the text. There are two unusually helpful sections on sexual dysfunction, but not enough on the management of sleep disorders. Levodopa does increase alertness in some patients, but not in others, and in my experience improved night time mobility can sometimes improve sleep. Books of this type can never suit everyone and can never be comprehensive, but there is plenty of useful and accessible information in this one. I commend it to patients and families and especially to neurologists.

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