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Meeting the challenge of progressive multiple sclerosis
  1. Michele Wates

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Having been diagnosed in 1982 I have lived for 19 years with a slowly progressive form of multiple sclerosis. I was therefore glad of the opportuntity to catch up on recent developments in the understanding of the disease and discussion of some of the latest options for treatment. Although the book states in the opening paragraph that it is written for people with this form of multiple sclerosis, it is also obvious from the first page that it is going to be very hard work for anyone without a scientific or medical background to make sense of the information it contains. I constantly found myself having to reread and struggle to understand the technical language used throughout the book. Such a pity when there is much potentially useful information there.

I was interested to see what the writers would have to say in the section on management and self help since this is an area the medical profession has often overlooked. There is discussion under various headings such as coping with fatigue, bladder dysfunction, tremor, and cognitive dysfunction, followed in each case by a series of bullet points on the management of symptoms. Once again the language defeats the object of the book as these read more like checklists for doctors and multiple sclerosis nurses than clear, accessible summaries that people with multiple sclerosis can make use of.

It is heartening to see that in these days of disability legislation (the Disabilities Act in the United States and the Disability Discrimination Act in the United Kingdom) questions of access to buildings and equipment and discussions of legal rights and financial entitlements are seen as having a place in a book on multiple sclerosis. The past 19 years have taught me that factors such as attitudes towards disabled people, the design of buildings, and the way in which services are delivered may impact on the lives of people with multiple sclerosis and their families just as much as the effects of the disease.

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