The official Patients sourcebook on Narcolepsy – a Revised and Updated Directory for the Internet Age.
James N.Parker, MD
and Phil;ip.M.Parker, PH.D., Editors.
A reference manual for self-directed Patient Research.
Recently I decided I needed some help with my research on narcolepsy. The internet is great, but I sometimes feel I am going around in circles, either reading pages that lead back to previous pages, or pages that repeat previous pages, with minimal differences, or …nothing! So I looked for some books on the subject. It turns out there are very few. How come the world has seemingly heard of narcolepsy, albeit, mostly mythical rather than factual, and yet so few people have written about it? Ok, so only one in 2000 of us have the condition (American statistics), so overall, it’s not going to affect that many people, but it is still important that folk know about it, especially those of us who live with it. There were two books that seemed interesting, so I ordered them and looked forward to their arrival.
The first of these was The official Patients sourcebook on Narcolepsy – a Revised and Updated Directory for the Internet Age.
James N.Parker, MD and Phil;ip.M.Parker, PH.D., Editors. This describes itself as ‘A reference manual for self-directed Patient Research’. This description grabbed me immediately as usually folk are dissuaded from doing their own research, and discouraged from learning anything that might directly contravene information from their medics. Well, at least until lately. With the advent of the world wide web, this attitude is less common, now being challenged and replaced by tentative encouragement to research. There is a certain philosophical resignation that recognises that if people want information, they will get it one way or the other, so better to provide it, and make sure it’s accurate. Having said that, the web itself is a minefield of myth, misrepresentation, or inaccuracies, so the researcher still has to beware. A book such as this, I hoped, would lead me to pastures new – with information that could be trusted.
When the book arrived, I was into it straight away. I was not disappointed. The list of contents is long, and looks to be comprehensive. The first chapter deals with narcolepsy, what it is, who gets it, how it is diagnosed and treated. It also looks at how individuals and their famiies can cope with narcolepsy. At the end of the chapter is the first of several vocabulary builders. These are helpful for lay people who have not come across some of the words and terms used in the previous chapters.
The second chapter is about how to find guidance about the condition; organisations, associations, finding doctors and health services, and how to work with your doctors. There ia another vocabulary builder at the conclusion of this chapter. Chapters three to nine look at possible sources of information, including clinical trials , studies on narcolepsy, research from patients, books, multi-media information, databases for physicians and dissertations on narcolepsy.
At the end of the book there are several appendices, dealing with researching your medications, researching alternative medicines, finding medical libraries and more on problem sleepiness.
I have browsed some of these chapters and found much to interest me, but I have not followed up any of the web site links yet. The editors make the point that most of the links, regardless of origins and age will be updated regularly, so information should not be out-dated, even though the book will age. As is the norm with websites, one link will lead to others and then to others, so hopefully updating will happen automatically.
I am looking forward to using this book and intend to start very soon.
If you are interested in the book, it is published by Icon Health Publications www.icongrouponline.com/health and is available from online booksellers, www.amazon.com and www.barnesandnoble.com who carry all the titles in the series, including similar books on insomnia, restless legs syndrome and sleep apnea.
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