Putting a human face on neurologic illness

Neurologic diseases can have a huge impact on patients and those around them.

A new Web site (www.thebrainmatters.org) has recognized this by bringing together a collection of online resources for the general public. And its bona fides are solid — it was created by the American Academy of Neurology Education and Research Foundation (www .aan.com) in an attempt to simplify and organize useful online information.

The site is laid out around 7 major neurologic disorders: stroke, migraine, epilepsy, Alzheimer's disease, multiple sclerosis, brain injury and Parkinson's disease. Each segment contains links to peer-reviewed resources on that topic and includes a general link to PubMed, which provides access to more than 11 million citations.

One unique feature of The Brain Matters! is that it offers profiles of patients living with neurologic disease. For newly diagnosed patients and their loved ones, this may be one of its most useful characteristics.

In the Alzheimer's section visitors can read about the real-life experience of Sharon Washington, whose 79-year-old mother was recently diagnosed with that disease. “My mother went from being very independent,” she says, “to being unable to make decisions. Now life is very limited for both of us.”

In the section on migraine, a mother describes how her 7-year-old daughter had trouble convincing her that her headaches were real. “Here was this little girl, in second grade, coming and telling me she had a bad headache. Her head hurt. I'd think, ‘Oh, maybe it’s something else. Maybe it's an excuse so she doesn't have to be outside or do her homework.' ”

Dealing with a newly diagnosed neurologic disease is frightening and confusing for most patients. Celebrity patients like Canadian actor Michael J. Fox have helped to give these diseases a public face. Now, physicians can recommend a site that will also help patients and their caregivers come to grips with their new reality.

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