Extra Hands for Jack Orchard

By Sherry Tyree
SPECIAL TO THE POST-DISPATCH

Calling all Civil Religion readers:

Self-described atheist Jack Orchard, St. Louis author of Extra Hands, has written an engrossing account of his battle against Lou Gehrig’s disease — formally amyotrophic lateral sclerosis.

I’d first heard about Extra Hands while listening to KFUO-FM last autumn when Jack’s dad, Bob Orchard, introduced the book to the radio audience and described his son’s life and his recent medical travails.

As engrossing as Bob’s description was, I did nothing then beyond checking to see if Amazon sold the book and promising myself to look into it.

Then a few weeks ago, a neighbor who knew of my interest gave me a copy. Once I began I couldn’t put the book down.

So I e-mailed Jack to tell him how much I enjoyed his writing — so fluid, insightful, funny and poignant.

Not bad for someone with ALS. Not bad for someone who “writes” with a specialized computer he controls with his eye movements. Not bad for someone who cannot move the rest of his body.

Within a day Jack wrote me back:

My agent had a tough time finding a publisher for my book since that industry relies so heavily on authors making the rounds at talk shows to promote their books. The many houses he contacted had plenty of praise for the book but worried about its commercial value given my limitations. In the end my agent, who represents Stephen Hawking among many other big names, said that if I could sell 5,000 copies it would give him the evidence he needs to demonstrate that it can sell without my participation in the marketing process. So far I’m at about 1,100 and I’ve just designed a new campaign to boost that number. It’s called the Chain Campaign.

So, reader, here’s your challenge. Buy or borrow the book for yourself and see if you don’t think — as I do — that it’s worth a wider audience than it now enjoys.

Next, go to the EXTRA HANDS website and check out this NBC news story.

While you’re there, see the instructions on how to do your part in increasing sales. It’s neither expensive nor time-consuming.

We can be extra hands for Jack.

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.

A Meaningful Life

By Mike Bush
Copyright 2008 KSDK

Click here to see the KSDK cover story

The eyes are never silent. With just a glance, they can say a lot. Jack Orchard's eyes are also his voice.

Using something called an Eyegaze communication system, Jack can operate a computer with just his eyes and synthesize speech.

"I can't imagine how people with ALS survived without something like this even 10 years ago," said Orchard.

The 40 year old Orchard has Amyotrophic Lateral Sclerosis, or Lou Gehrig's disease. It's slowly paralyzing and always incurable.

"For me the worst part is that I can't put my arms around the people I love," said Orchard. "The rest, like not walking, or eating, or talking, is a breeze compared to that."

Before his world was turned upside down, he was doing the same to the world. Orchard had an economics degree from Harvard, an MBA from Stanford. He was flying back and forth from Russia as an investment banker.

When he was diagnosed in 2002, he was told that he had three to five years to live and there was nothing he could do about it. But Orchard did do something about it. Shortly after his diagnosis Orchard founded his own non-profit organization, Extra Hands for ALS.

He recruited college and high school students like 17-year-old Chelsey Carter, who volunteer to help out ALS patients and their families on a weekly basis.

"We assist them with chores, laundry, sometimes do yardwork, babysit, running errands. Things that seem minimal but make a huge impact on a family," said Carter.

Starting his charity was like a lifeline and it pulled Orchard out of the darkness.

"When I came out of that tunnel and launched Extra Hands for ALS, I lost all the pain of my condition," said Orchard. "And I still work my tail off everyday to keep those feelings of emptiness away."

His passion for life and helping others also turned into a pathway to love.

"I emailed him and went and met him at his office and immediately we had a great connection," said 27-year-old Kristen Williamson.

Williamson was looking to raise money for a charity that helped patients with ALS, after her best friend's father died of the disease.

"I just really admired how he didn't let anything go, he lived in the moment and made the best of his life," said Williamson.

He can't speak. He can't use his hands and yet, Orchard has a positive attitude. Someone might be wise to write a book on how he does it, except that Orchard already did.

A camera tracks his eye movements and just by looking at the control keys on his monitor, he can type about 35 words a minute.

"I decided to do it because I had found a way to give myself some peace through my work on my charity, Extra Hands for ALS, and I wanted to share my discovery," said Orchard.

Orchard hopes the book, called "Extra Hands, Grasping for a Meaningful Life," has lessons for everybody.

"The overall message is everyone can make a difference in someone's life. Everyone's life can be meaningful. You just have find what that is and do it," said Williamson.

The eyes can sometimes paint a better picture than a paint brush.

"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", writes Orchard in the last paragraph of his book.

The future of course, is never guaranteed and while he's not expecting to be here even a year from now, Jack Orchard says he'll make the most of whatever time he has left.

And for any of us, those are words to LIVE by.

"There is so much left to do", writes Orchard. "So for now--back to work."

There is a costumed FUN RUN! to benefit Extra Hands with ALS coming up.
For more information visit http://www.alsrun.org

Shedding Light On ALS

The Rep's "Tuesdays With Morrie" and book "Extra Hands" raise awareness of disease

by Don Corrigan

"A tree's leaves are most colorful just before they die," declares Morrie Schwartz in the play now being performed at the Repertory Theatre in Webster Groves through Jan. 27.

Such simple wisdom from the play, "Tuesdays With Morrie," inspired the ALS Association of St. Louis to make this past Sunday's performance a moving and memorable membership event for the organization.

ALS stands for Amyotrophic Lateral Sclerosis, a disease which is debilitating and always terminal. Most people are familiar with the ailment as "Lou Gehrig's Disease" from the famous Yankees' player's speech as he said farewell to his time in baseball.

Gehrig told a packed stadium that he considered himself "the luckiest man alive." In the current Repertory play, Morrie Schwartz, who shares Gehrig's disease and fate, is not so sure that he agrees with the baseball player's sentiments about luck.

"It's a very moving play and we thought there was a natural tie-in with our ALS Association," said the group's development director, Gale Ingram. "There are so many great points made by the sick professor, Morrie, such as when you are on your death bed, no one is going to care how much time you spent faithfully at the office during your life."

Volunteers with the local ALS Association give up time at the office, and at home, to help those diagnosed with ALS. They also help families deal with the very trying times which they face as the end approaches for loved ones. Despite the strain and heartache, the ALS group members say they benefit by learning "just what matters most in life."

In the Rep play, a career-obsessed sports writer learns to make time for love and connection. The declining professor teaches about life and love, while at the same time he himself learns how to die with dignity and without anger or narcissistic regret.

"The public's impression is that this is a rare disease. It's not," said Sharon Jacki, education, awareness and advocacy director for the St. Louis group. "ALS victims die so quickly, and so many want to stay out of the public eye, and that makes people think it is rare. It's not."

Jacki said the ALS Association is fighting at the state and national level to raise awareness of the impact of the neuro-muscular disease. Even in its early stages, people begin to lose basic motor skills. Eventually, patients lose control of arms, legs and the body, and will die of respiratory failure in two to five years.

"Most ALS patients stay out of the public eye, but Jack Orchard here in St. Louis is an exception," said Jacki. "He is not afraid to be visible. He has gone with us to Washington, D.C., to get the word out. He has done so much to create understanding."

Who Is Jack Orchard?

Orchard, a resident of Richmond Heights, had the world by the tail a decade ago. A Harvard grad with an impressive resumé, Orchard was jetting back and forth to Russia with business partners in investment banking. Then, one day, he noticed his wrist muscles seemed unusually weak during a round of golf.

A series of neurological tests on Orchard narrowed the diagnosis to ALS. At age 34, Orchard became one of more than 30,000 other Americans living with terminal Lou Gehrig's disease. It's not an easy life, but in the six years since he was diagnosed, Orchard has made most every minute meaningful.

Orchard chronicles the highs and lows of his situation in the recently-released book, "Extra Hands." The memoir recounts his return to St. Louis for treatment after living in San Francisco. He then went through a painful divorce. He also started a charity to help other folks with ALS.

Orchard has lost his ability to speak after a needed tracheotomy. He functions from a wheelchair and communicates using an Eye Tracker, a device hooked up to a computer monitor. The equipment senses when Orchard focuses on a letter or number, and allows for emailing and other communication.

His memoir was written entirely through use of the Eye Tracker. Like Morrie Schwartz in "Tuesdays With Morrie," Orchard can wax philosophic about his battle with ALS, a battle which he knows he cannot win.

"If we are lucky, our lives are luminescent, filled with more soaring highs than plunging lows," noted Orchard, after sessions of watching fireflies from his deck. "We can find meaning together by bringing out the best in one another.

"No matter what our muscles can do, we all have the same ability to improve our lot," added Orchard. "Always, always each of us is a flash across the darkness."

Orchard's own "flash across the darkness" is his charity, Extra Hands for ALS, which places young people in the homes of ALS patients for several hours a week to address individual needs, to help with home chores, and to provide companionship. Orchard now has a special friend, Kristen, who has worked with him in promoting the "Extra Hands" charity.

Extra Hands At Work

Dorothy Ptacnik of South County has a deep appreciation for Extra Hands for ALS. Its teen volunteers have shown up at her door to help.

"My husband, Pete, was officially diagnosed with ALS on Jan. 21, 2005," said Dorothy Ptacnik. "It was a shock for him, but not to me. I had been researching what might be the cause of his twitching and his muscle spasms. So, I wasn't surprised."

Ptacnik said the young people who come to offer helping hands tend to be from fraternities and sororities at local colleges. She said they provide help, in part, to fulfill community service requirements at school. She said they learn all about ALS and its effects, mostly while on the job.

"My only concern about Extra Hands is that college students are not so available at exam time, or at breaks, or when summer comes," said Ptacnik. "I would really like to see the high school students get involved. It is a good program to have available.

Ptacnik said she is involved with the ALS Association of St. Louis and said they are an invaluable resource for families dealing with Lou Gehrig's Disease.

"I appreciate that the Association is advocating for more research about the disease," said Ptacnik. "One of the things that has been learned is that it often affects athletic people or those who have served time in the military. My husband served in Korea. The incidence of the disease seems to be higher with these guys."

Ptacnik said she was unable to go to the ALS Association's event at the Repertory Theatre in Webster Groves.

"I would really like to see their production of the play, 'Tuesdays With Morrie,'" said Ptacnik. "But my husband needs attention and it is hard to get away. I think it will be very helpful if a lot of people learn about ALS through seeing that play.

Extra Hands - Grasping for a Meaningful Life

by Jonathan Frank
Copyright 2007 Ladue News

"When good men die their goodness does not perish, but lives though they are gone."

Jack Orchard is fond of citing ancient Greek mythology, and it would not surprise me to learn that he knows Euripides’ quote. If he is unaware of it, he is certainly conscious of its essence. In his 2007 autobiography, Extra Hands: Grasping for a Meaningful Life, the St. Louisan chronicles his struggle with amyotrophic lateral sclerosis (ALS) and his successful effort to start a service and fund-raising organization to assist families of those with the disease.

The memoir begins in rather ordinary fashion. Orchard recalls the inspiration he received from several teachers and early life experiences. Of note is an archaeological dig in Greece he participated in as a young man. He also tells of his three siblings and his parents, zoning in particularly on his father’s heart disease and how that experience prepared him for his own encounter with mortality.

Next, Orchard describes the achievements of his early adult life, namely his successful financial enterprise in Moscow in the early days after the Cold War and his relationship with Eve, his employee in Russia whom he eventually married and lived with in San Francisco upon returning stateside.

The narrative gathers momentum as Orchard writes of his struggle with ALS, a disease in which motor neurons die and the brain loses control over all the body’s voluntary muscles. The symptoms showed up in 1999, when Orchard was 32. He first noticed twitching and a deterioration of function in his left hand. This set off a paranoiac quest for answers from a roll call of reputable physicians all over the U.S. Most of us can relate to the fear and frustration of unexplained health symptoms, but it is hard to imagine bearing the burden of this enormous anxiety even as the symptoms continue to spread and amplify. The tingling, cramping and stiffening had extended to Orchard’s other extremities by the time he was officially diagnosed in 2001.

In the book, Orchard finds his voice when recalling the uncertainty of his search for answers and the enthusiasm of his later charitable cause. The account of his life up until his symptoms arrive is somewhat mundane, but the story of his coping with ALS while at the same time starting Extra Hands is truly unique.

The life lessons of Orchard’s youth hold less distinctive value to us than what we might call his ‘death lessons.’ He imagines his dying moments with a straightforward calm: “The mysteries that you feel about your own death no longer plague me because I’ll choose the moment, I’ll surround myself with family, and I’ll tell them one last time that I love them.”

And we can be stirred by the vigor with which Orchard approaches his limited time. His story demonstrates the possibility that people can summon the energy of just their minds to achieve great things and the certainty that selfless giving returns fulfillment. He remembers the moment of his awakening, staring at himself in the mirror and contemplating his condition: “I finally understood that only I could change how much meaning there would be in my life.”

Orchard also captures the feeling of existing in a physically helpless state. First, he goes through the dread of having a tremble in his hand progress into a crippling paralysis all over his body. He explains the labor of writing (he types on a special computer that tracks his eyes). He reflects on the loss of privacy that such a debilitating disease brings about and the threat to his sense of identity. He wonders whether he is “less myself, less of a person” without the ability to say and do.

Finally, he acknowledges the impulse to embrace a religious conversion. Ultimately he sticks to his belief in the power of the human spirit and credits this faith as the origin of Extra Hands. This organization raises funds, works to increase public awareness, and enlists student volunteers to assist ALS families. Extra Hands, in the words of Orchard, “enacts the central feature of humanism, our human responsibility to each other, to making community here on earth in this life.”

As an autobiography, Extra Hands does not give us a complete view of most years in its author’s life, but it does present us with an honest and uplifting portrait of the most vital ones.

Jack Orchard provides 'Extra Hands' for those who need assistance

FOCUS ON ALS
BY VICTORIA SIEGEL, SPECIAL TO THE JEWISH LIGHT

Every once in a while, if you're very lucky, you'll meet someone so inspirational that your perspective on life will change. That person is Jack Orchard.

Diagnosed seven years ago with amyotrophic lateral sclerosis (ALS), which is a progressive neurodegenerative disease that attacks nerve cells in the brain and spinal cord resulting in muscle weakness and atrophy, this remarkable young man has accomplished more since his diagnosis than many people will in a lifetime.

Shortly after Orchard was diagnosed with the disease, he started a non-profit organization called Extra Hands for ALS. This association coordinates high school and college students and volunteers on a weekly basis who help people with ALS, also known as Lou Gehrig's disease, take care of various day-to-day household activities. But there's more to Extra Hands. By all accounts, it would seem the purpose of Extra Hands is to help people with ALS. However, as is typical with Orchard, it's not that narrow-focused. His purpose for Extra Hands is to help society at large.

The official mission of the organization, from its brochure and Web site, indicates its higher purpose: To instill the importance of community service and develop leadership qualities in young adults by uniting them with people, and their families, who have ALS.

"I wanted to show how the program is a working model of a core humanistic tenet: that if we all work to bring out the best in others we get the best in life," Orchard said. "Extra Hands is a real-life enactment of that principle. A program like this can smooth the religious divide created by the religious right and other problems we have facing our planet."

Orchard says that Extra Hands has implications beyond helping ALS families. "It could be used for people with Parkinson's disease, Alzheimer's disease, and stroke victims. ALS affects 30,000 families, Parkinson's 1 million, and Alzheimer's affects 4.5 million. As the Baby Boomers age, those numbers will double by 2025 and triple by 2040. Social Security, Medicare and Medicaid will all be affected by this."

Orchard's ambitious view of how one organization can affect a society is right in step with his general philosophy of life, even as he struggles to maintain his own.

"I realized a few years ago that I had spent my life devoted to my own prosperity up to that point and I wondered one day what would my life have meant if I dropped dead right then. The answer was 'not much.' So I started down my current path in search of meaning and that path has led me to here."

His humble assessment of his life prior to Extra Hands belies a past full of triumphs and successes. "He was captain of the football team when he was at John Burroughs High School and received early admission to Harvard University," Robert "Bob" Orchard, Jack's proud father, said while ticking off his son's accomplishments. "Jack graduated in the top of his class from Harvard; got selected with a classmate out of 5,000 candidates to work at a European world bank in London; started the very first private investment bank in Russia; and while working in Russia he got his Master of Business Administration degree from Stanford University, graduating top in his class, going back and forth to Russia and California every six weeks. He's one of these remarkable people. He's my hero." Jack also founded and managed numerous firms including iSpringboard Advisors, a venture capital firm, and Red Square Software, a software company.

However, Orchard says his greatest feat is Extra Hands. "The rest is just garbage compared to it," he said.

He's also written a book. Extra Hands, Grasping for a Meaningful Life is Orchard's account of his extraordinary and often exotic life. From working on an archeological dig in Greece as a young teenager to starting the bank in Russia, Orchard tells a compelling story of a fascinating life, punctuated with descriptions of how ALS invaded it. However, that's not how he sees the book. "I wrote it to explain why I started Extra Hands," Orchard said.

He also wants people to realize through his book that his mission is bigger than helping people with ALS. "We, as a society, don't have to be so divided or divisive," he said. He wants people to know that Extra Hands is inviting everyone to participate in it. "It has enormous potential to help others." Finally, he wants the reader to know that he's not an unusual person.

"God forbid people think I'm a hero for what I've done. I need Extra Hands like I need food and water."

In the book, Orchard seamlessly weaves references to the great thinkers of the world, from the French philosopher Blaise Pascal to Thomas Jefferson to Meriwether Lewis, while he details his encounters with life. His obvious intellect pours out of each sentence and a quick look around the bookcases in his study reveals a consummate reader of great works. Orchard also speaks in the book about his religious upbringing at Temple Emanuel. "Judaism was and still is for me a cultural identity, a connection to a collective history, and a set of values."

What makes this interview and the book even more remarkable is that Orchard conducted it, and wrote the book, without ever speaking a word with his mouth or using his hands to type a sentence. When all those muscles betrayed him, he started to use an Eyegaze Communication System. This technologically-sophisticated equipment tracks his eye movements as they scan the on-screen keyboard. He has become so skilled using it that he now types faster than some people who use the hunt-and-peck keyboard method.

Orchard is an example of someone who out-performs statistics. In 2001, a doctor told him he'd be dead in 2006. The rulebook says a patient needs a ventilator full-time when his forced vital capacity is below 15%. "So, here I am below 10% and I feel fine," he said. "No headaches or foggy thinking." Those last two words are an understatement. The work he's continuing to do is evidence of his mental acuity. He's the chair and founder of the Jack Orchard ALS Foundation along with Extra Hands, and in addition to his book, he also wrote a screenplay at the request of a fellow Stanford alum.

His main role with Extra Hands is fund raising. "Like most charities, we never have enough money and we also have a high-class problem," Orchard said. "The Extra Hands program is so popular that we could easily spend 10 times what we have and not even come close to satisfying all of it. We get two to three requests a week from all 50 states and various foreign countries to open new chapters." He tracks down funds through major gifts, grants, sponsorships and grassroots work. Orchard does most of the grant writing. In order to meet the demands of the upcoming fiscal year, he says Extra Hands could use $500,000.

Orchard wants others who are similarly diagnosed to know that they don't have to be victims. "You can be a teacher and an example," he said. "Sure there are no words to describe how tragic it is but we all have the ability to find something redeeming in it. To make a silk purse out of a sow's ear." He also has a message for people in general: "Take advantage of what you have. It sounds obvious but life is precious and unbelievably fragile. It's incredibly easy to take it for granted and squander it."