Love and Dementia

To love what is: The caregiving life.

How to Use Your Brain in Perpetuity

Doctors hate to admit their ignorance about dementia's causes & cures.

As I learned the hard way 8 years ago, when my husband, Scott, began the downward spiral of dementia after suffering a traumatic brain injury, doctors are loath to admit they know little about what causes dementia and nothing about how to prevent, treat, or cure it.

For a year, the public was allowed to believe that Gabby Giffords, who was shot through the head in January 2011, might recover enough to resume her seat in Congress. Anyone who has lived intimately with severe brain injury, as I have, knew that this was next to impossible. My hard-won knowledge came from experience, and not from any neurologist. On the contrary, in our case, as in Giffords's, from the start the doctors encouraged in us the futile hope that Scott could be healed.

In the U.S. alone, there are over 5 million people with progressively worsening dementia (one cause of which is brain trauma), along with their 15 million unpaid caregivers. These numbers are increasing by the day. Yet research on this dread condition is underfunded and slow, especially compared to research on diseases affecting smaller populations.

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One way each of us can greatly contribute to brain research is to consider donating our own brains. All brains are needed: healthy, diseased, or impaired. Scott and I both signed the donation forms years ago, an act that continues to cheer me.

If you're in the New York area and want more information about donating, contact Dr. Karen L. Dahlman, Project Director of the Brain Tissue Donation Program (Alzheimer's Disease Research Center, Mount Sinai School of Medicine) at 212-241-2968. Or contact the Alzheimer's Association at www.Alz.org, tel: 800-272-3900. Or ask your local hospital.

Think about it while you still can.

Alix Kates Shulman is the author of 14 books including the best-seller Memoirs of an Ex-Prom Queen and a memoir about life with her brain-injured husband, To Love What Is.

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