Locked-in Syndrome

I'm on a mission to raise awareness about a rare condition called locked-in syndrome. My neighbor, Dan, a 34 year old world class drummer, has been locked in now for two years, due to a brain stem stroke. He has been completely paralyzed except for his eyelids, and cannot speak, yet he hears and understands everything going on around him. I had never heard of the condition before this happened to him, and I recently learned that many people do not survive this kind of stroke, and that 90% of people who are locked-in die within four months. Dan is an amazing guy; he's talented, fun, and full of life. That's why I pledged to donate 5% of the first years profits from my book, Learning by Accident, to Dan's Trust.

In my opinion, Dan is alive today because of his parents, Chris and Tom, the two most incredible caregivers I have ever met. They have given up just about everything to take care of Dan around the clock with very minimal help. When Dan arrived home after a few months from stays in two different hospitals, he had bedsores and no muscle tone. His dad, Tom, an architect, built a standing frame to "get Dan upright" a few hours every couple of days, and his family has worked tirelessly to stretch and strengthen Dan's muscles. They also devised a way to speak to Dan. Dan looks up for "yes" and blinks for "no" and they have an alphabet system to spell words with Dan, but this provides only minimal communication. Chris, Tom, and especially Dan work hard every day with the hope that Dan will speak and live independently again. And he IS making progress, but it's slow, as is the case with all brain injuries. Incredibly, they are not bitter or negative; in fact, their home is full of hope, love, and some of the most amazing food you ever tasted! Dan is a self professed foodie, who watches the food channel and has his mother whip up all kinds of wonderful concoctions. He can only eat pureed food because he cannot chew, and a lot of it comes from their flourishing backyard garden.

If you have any encouraging stories or news about locked-in syndrome, please contact me. To learn more about Dan and to help his family, check out Dan Duggins Trust on Facebook and watch Dan's progress at: Watch Magic Happen on Facebook too.