Blog Posts

How to Use Your Brain in Perpetuity

This blog is one of a series that Alix Kates Shulman wrote for Psychology Today about her life after a shattering accident left her husband with a brain injury and dementia. She describes a roller coaster ride many caregivers will recognize, but these blogs are also a tender love story—the gist of it is captured in the title of her deeply moving memoir, To Love What Is (2008). 

Published by Psychology Today on March 20, 2012.

As I learned the hard way eight 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', from the start the doctors encouraged in us the futile hope that Scott could be healed.

In the United States alone, there are over five 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.

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 coordinator Jorge Ginory-Perez at the Alzheimer’s Disease Research Center (the Icahn School of Medicine at Mount Sinai) at 718-584-9000, ext. 1704, or 646-832-7291. 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.