He rules with his eyes

Copyright 2008 Idaho Health

Joe Harris can’t move his body, so he runs a nonprofit agency called Extra Hands for ALS with nothing but his two eyes and his agile brain. Computer software he directs with eye movements helps him communicate, and an army of volunteers serves as his arms and legs. The Boise-based agency has two purposes. The first is to find high school- and college-age volunteers to help people like Harris who are diagnosed with amyotrophic lateral sclerosis, or ALS.

The second kind of help goes to the volunteers. They get the benefit of deep bonds with other families and with their communities. They gain experience if they plan health care careers. Sarah Barsness, assistant manager of the Boise chapter, says working with Joe is not like working for other bosses. Joe has verve times 10.

"He has a lot that he wants to get done, and he is very, very devoted to working with people with ALS," Barsness said.

Extra Hands chapters nationwide operate on annual budgets of $75,000 each in government grants and donations. They use volunteers to help people with ALS perform tasks the rest of us take for granted: tearing open mail, cleaning the house, getting groceries or doing yard work. Students have adult mentors who visit the families with ALS each month.

Harris’ ALS, or Lou Gehrig’s disease, is a neurological illness that makes it increasingly difficult for him to move, even as his brain remains vital and active. He cannot speak, and he cannot breathe on his own. The disease is fatal, but Harris refuses to give up. "I want my family and friends to be proud of me, especially my (7-year-old) daughter," Harris, 36, wrote in an e-mail. "I want her to understand that the most important thing you can do in life is have compassion toward others and give back to society in the form of helping those that may be less fortunate," he wrote.

Among Harris’ goals for the agency is to boost the number of families who get "extra hands." In 2007, the agency helped about 17 people with the disease. Statistically, about 40 to 50 families in the Valley may live with someone who has the disease.

Harris learned he had ALS as a newlywed just starting his career. It still is hard. "It makes me sad and sometimes depressed to think I’ll have to leave my family someday," he said. "It also makes me angry to have to live my life so differently than I want to. "But the love of my family and my quest to make the Boise chapter .... the very best it can be, often leads me away from those emotions and gets me back on track."