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‘Extra Hands’ Reaches Out… by Mitzi MacDonald and Jill Barrett
“You know, I used to think that a few of my old girlfriends were high maintenance. Boy, did I have that wrong,” said Jack Orchard. Orchard “speaks” by typing his words into a special computer that tracks his eye movement. He will gaze at one letter at a time, then the computer will blurt out his entire sentence.
Orchard suffers from amyotrophic lateral sclerosis (ALS). This disease, often referred to as Lou Gehrig’s disease, attacks the muscles in the body, finally affecting the person’s ability to speak, swallow and even breathe. The disease does not affect the mind, however.
Still, Orchard loves life and continues to have fun. He is the force behind the organization “Extra Hands,” a group that pairs teenager volunteers with people with ALS and their families. The students do chores such as shoveling snow, raking leaves, or almost anything—except direct physical care. Orchard explained his love for life.
“The secret to avoiding depression has many parts, at least for me. First and foremost, you have to have something to look forward to. I love my work, and every morning when I wake up I can’t wait to get
to my computer to trade Emails with my team and people in the ALS community across the country.
“Second, you need to break out of being sedentary. Get out of bed, get cleaned up and dressed, and make yourself look as good as you can. We all have some measure of pride in our appearance, so tap into it.
“Third, you have to get involved with friends and family and stay busy. Nothing can plunge you into depression faster than isolation,” said Orchard.
“Keep in mind that you’re not seeing the Jack who was struggling with [becoming more dependent], but the one who years ago emerged from the blackest depression imaginable My current happiness is built on a granite foundation—the realization that I, and only I, have the power to make my life meaningful or meaningless. The day I understood that was the day when I stopped focusing on my waning independence, and started focusing on what I could still do despite my many disabilities.
There are plenty of studies showing that people with terminal illnesses are much less depressed than healthy people think they should be. I guess that they have found the same secret that I have, that happiness doesn’t come from being able to twirl spaghetti on a fork or to put your socks on, but what you can do to make your life feel meaningful.”
Before his illness, Orchard traded and invested in the world market. While still in his twenties, he was part of the new Soviet Union and the post-Communist era. He settled in the San Francisco area. Life was good: he was making lots of money. Orchard thought he had all the time in the world to help people, focus on his needs and become wealthy and stable.
He didn’t have that kind of time.
Orchard slowly noticed small things, like his occasional inability to turn a door handle. He decided to see a doctor and get it checked out. One frustrating aspect about ALS is that there really isn’t one test. It’s only when all the tests for other diseases come back negative and the person gets progressively worse that a true diagnosis can be made.
As Orchard became more and more dependent, he knew he wanted to do all he could to raise the money needed to find a cure for the disease. He traveled all over the country talking to doctors in the field. He could see there were plenty of promising avenues, but not a whole lot could be accomplished without the proper funding. The people who had the disease, he came to realize, were the best people to bring attention to it. And what ALS needed was attention.
After seeing a poster of college students working hard on fundraising for a cause, Orchard decided to make young people aware of what ALS is and have them get involved with families by helping out. Orchard drafted a letter to friends. In no time he had $25,000 to start the Jack Orchard Foundation, and Extra Hands was born.
It works by pairing two student volunteers and an adult volunteer mentor with an ALS family. The students do chores, such as walking the dog, while the adult mentor makes sure everything runs smoothly. The program enriches the lives of everyone involved. The caregiver and the person with ALS appreciate the help, while the student learns how it feels to make a difference.
“I myself have lost family members to this disease, and when I heard about Extra Hands a few years back I knew I wanted to get involved,” said Mitzi MacDonald. Her 16-year-old son and another boy she is parenting comprise her team. “They are learning a lot about living life to its fullest, no matter what.”
Public awareness is a big part of the program. Extra Hands will be out in full force for the annual Run For Your Life Walk/Run in Tower Grove Park. Dress for the occasion in your best wacky costume. Prizes for the best costume will be awarded. Sign up for a 5K run or a 1K Family Fun Run.
And where will Extra Hands be in twenty-five years?
“I see it helping even more than just ALS patients. There will be Extra Hands for all disabilities — maybe even the temporary ones. We are currently working on Extra Hands for Parkinson’s, for cancer patients, Alzheimer's, MS and so on. Whenever there is a situation that a person has to consider losing time from their job to care for a loved one, then Extra Hands is needed.”
The run will be held on Saturday, May 3 at 10:00 a.m. For more information and to register, go to www.alsrun.org. For more information on volunteering with Extra Hands, visit www.extrahands.org.
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