Early Onset Familial AD
NPR Audio Interviews with Thomas Debaggio
When he was 55, herb farmer Tom DeBaggio, called the "Best Rosemaryologist in the country," began to notice problems with his memory. Working the checkout register of his family business, he could not name plants he'd been growing for decades. At 57, Tom was rather brusquely diagnosed with early onset Alzheimer disease. Starting in 1999, NPR reporter Noah Adams periodically visited Tom, his wife Joyce, and son Francesco at their greenhouse in Virginia to chronicle their life. On this page, the Alzforum has compiled the NPR audio links, as they bring to life the progression and the struggle.
Get to know Tom as he speaks cogently about his trouble accessing words, his efforts to keep his mind challenged, and his clear insight into the future. "I know my outcome, unless something great comes along." Hear 35-year-old Francesco: "I wonder if it is going to affect me. Any time I forget something, I think this is it." By the next visit, Francesco is running the greenhouse and Tom is writing books. He is overcome at one point, and says he is becoming more emotional. He is increasingly angry about Alzheimer disease tripping him up. "I jump up and down and scream and am a wild man all of a sudden…I am mad as hell." He describes a visual hallucination, and says the disease is moving too fast. "I don't know what outrage will happen the next day." That summer, Tom's insight is slipping. He cannot remember Noah Adams. "I won't remember you tomorrow." But forgetting relieves his frustration, and written notes help him get things done in the house. While taking his regular walk, "I had this ghostly feeling…I am not really here…I don't know where I am." A psychiatrist helps Joyce cope. A year after Noah's first visit, Tom's authoritative guide on herbs has been published, but he remembers little about it. He talks about seeing bright lights and having strange brain sensations while falling asleep. He recounts a terrible night after accidentally overdosing on a medication. Tom still drives familiar routes but not new ones, and thinks about having to give up driving.
Five years later, Tom does not write, cook, or drive any more. He is shaken up about having gotten lost and being brought back by the police. He knows he has lost control and is anxious. He cannot read anymore. "What for?…It's all finished." By the most recent visit, last month, Tom does not make breakfast or take his medicine on his own. He does not find the bathroom in his house. Tom is fascinated with small things. "Sometimes he acts like a 3-year-old," Joyce says. The anger has gone. Tom does not know the name of his disease. He asks Joyce who he is. Tom cries. But he still writes evocative lines that show how much of him is still there. Somewhere.—Gabrielle Strobel, excerpted from NPR audios.
The NPR website features excerpts of Thomas DeBaggio's books,Losing My Mind, and When It Gets Dark, both 2003, The Free Press/Simon & Schuster, Inc.
An Alzheimer's Journal, Part 1
All Things Considered, 22 December 1999
An Alzheimer's Journal, Part 2
All Things Considered, 16 March 2000
An Alzheimer's Journal, Part 3
All Things Considered, 11 July 2000
An Alzheimer's Journal, Part 4
All Things Considered, 22 November 2000
Tom DeBaggio's Alzheimer's Journey Continues
All Things Considered, 19 May 2005
Caring for a Husband With Alzheimer's
All Things Considered, 20 May 2005
Revisiting Tom DeBaggio, and Life with Alzheimer's
All Things Considered, April 12, 2007