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"So much left to do"
ALS victim starts project to help teens and patients



By Erin Taylor
Tuesday, November 6, 2007 5:36 PM CST



Submitted photo/ St. Louis native Jack Orchard was a married Harvard graduate working as a consultant in San Francisco when his life changed several years ago. This photo was taken in Florence, Italy, while Orchard was working in Europe in 2000.

At 33, Jack Orchard found his wrists were beginning to affect his golf game.

The former John Burroughs School football team co-captain was living in San Francisco, working as a financial consultant. He had recently returned from Moscow, where he and several business partners opened the first private investment bank there. Life was looking good for the married Harvard University graduate with the impressive resume.

Orchard had experienced neurological problems previously; a right foot that went mysteriously limp for three days, his shoulder muscles seizing when giving his wife a hug. When Orchard noticed his wrist muscles were inexplicably weak, he called his father in Frontenac for advice.Bob Orchard told his son to come home to see a neurologist he knew. Tests ruled out multiple sclerosis and other neurological diseases. But the more other conditions ruled out, the more it became clear; Jack was suffering from the beginning stages of amyotrophic lateral sclerosis, more commonly known as Lou Gehrig's Disease.

Now 40, Orchard spends his days running his "Extra Hands for ALS" charity from his Richmond Heights home. The disease has confined him to a wheelchair.

Last year Orchard underwent a tracheotomy, which has prevented him from speaking. He communicates by using an Eye Tracker, a machine hooked up to a computer monitor. The eye tracker senses when Orchard looks at a letter or number on the screen. The machine is Orchard's main means of communication.

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. The ALS Association estimates life expectancy for those with ALS to average two to five years from the time after diagnosis. As many as 30,000 Americans are living with the disease at any given time.

As in Orchard's case, ALS is diagnosed often by ruling out other diseases that mimic the symptoms of ALS. Onset symptoms include muscle weakness and twitching and can progress to include difficulty in breathing and swallowing and paralysis. There is no known cure.

Life has changed dramatically for Orchard since his diagnosis. He moved back to St. Louis, went through a divorce and started his charity, which has raised $3 million in the last five years. Orchard's "Extra Hands for ALS" charity places teens in the homes of ALS individuals for two hours each week to help with chores, provide companionship and raise public awareness.

"It's what I like to call a charitable two for the price of one because it is as much a youth development and leadership program as a it is a patient service," Orchard said through the machine.

He said the organization gives a reason to continue.

"It was an ugly realization when I was diagnosed that if I had dropped dead right then, my life would have felt meaningless and self-centered," he said. "So when I finally emerged from the depression I had buried myself in, I realized that if I could use my gifts, at least those ALS wouldn't strip away, to improve the lives of others, then I could die with the knowledge that I had spent my time purposefully and meaningfully."

One afternoon a few years ago, a woman stopped by Orchard's home to see if she could help organize a marathon for "Extra Hands." The two fell in love and remain a couple.

"I think its extraordinary how she could fall for a guy like me on borrowed time and unable to put my arms around her, but that's what makes her so wonderful," Orchard said.

Orchard recently released a memoir of his life before and after his diagnosis. "Extra Hands: Grasping for a Meaningful Life," was written entirely through Orchard's use of the Eye Tracker.

In addition to raising funds for the charity, Orchard hopes the book acts as a roadmap "for others lost in similarly harsh territory."

"I want them to see that they too can find a measure of the peace I've found," he said. "It's not a matter of spirituality, because I think the work I do could be fulfilling for anyone regardless of their beliefs. You might call it a humanist approach to life that we can all get the best in life by bringing out the strengths and talents and goodness of others."

Bob Orchard calls his son his hero but said he isn't surprised by Jack's attitude.

"He's always been an achiever," Bob said.

Jack spends most of his time working out of the living room of his home, surrounded by dozens of family photographs hanging on the walls.

In his book, Orchard writes: "If it's true that when you die, your life flashes before you, this room will be an excellent substitute. When my time comes, I would like to be surrounded, one way or another, by the people who have meant so much to me, who have shaped my life, the people to whom I connected, to whom I am responsible, and on whom I rely.

"But there is so much left to do; so for now, back to work."

You can contact Erin Taylor at etaylor@yourjournal.com.

To learn more about "Extra Hands for ALS," or to purchase a copy of Orchard's book "Grasping for a Meaningful Life," visit www.extrahands.org or www.jackorchard.org.

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