Q&A with Joe Harris of Extra Hands for ALS
Joe Harris, 36, was diagnosed with a fatal illness when he was a newlywed in his mid-20s. He had ALS, or amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease. Although he cannot move his body or breathe on his own now, Harris’ mind is busy. He has plans and more plans for his agency, Extra Hands for ALS, intended to help people with the condition, which mainly strikes men ages 40 to 60 and is considered an inevitably fatal disease at this time. But Harris’ gaze is focused not on his own problems as much as on taking his chapter of Extra Hands as far as it will go.
Here he is, in his own words:
Q: What keeps you going strong enough to continue to carry out this job?
A: The support of my family and friends, Jim (Presbrey), Extra Hands for ALS’s national chief executive officer, Jack Orchard, the national founder of Extra Hands, who also has ALS that has progressed to the same point as Joe’s, and Sarah (Barsness), assistant manager of the Boise chapter of Extra Hands.
Of course my special doctors and various health professionals keep me well. But the main reason I stay strong enough is that Extra Hands and helping others gives me a purpose in life. A simpler answer is that I want my family and friends to be proud of me, especially my daughter (Kate, 7). I want her to understand that the most important thing you can do in life is have compassion towards others and give back to society.
Q: How do you do it as a practical matter? Sarah (Barsness) mentioned that you can communicate by moving your eyes? How does that work?
A: I have an onscreen keyboard. I use an eye-gaze plexiboard alphabet board, Readplease software, Dasher software, Gus software, a laptop and an eye-gaze system called Eye Response Technologies, which all allow me to communicate with others. This technology allows me to communicate face to face, by e-mail, instant messenger, text messages, online telephone relay and via message boards. The main forms of communication I use for Extra Hands-related communication is face to face using the alphabet board, e-mail and instant messenger. The eye-gaze system works by tracking the pupil of one of my eyes and then the movement of the computer mouse mimics the movement of my pupil. The eye-gaze software allows me to utilize all the functions of a normal computer mouse, like click, double click, drag-n-drop, etc.
Q: What are your goals for the organization?
A: My short term goals are to create an Assistive Technology Borrowing Library, for People with ALS (PALS), by February, finish an ALS lecture series geared towards young people but for anyone to attend, finish putting together a Extra Hands Local Advisory Board to assist me with key issues by February, continue creating close community relationships for recruitment of students, mentors and PALS and to find a program historian (the chapter’s progress) by the first part of next year. For more information on what we are currently doing or what we are planning on doing, go to our chapter Web page.
Q: And long-term goals?
A: My long-term goals for the Boise local chapter of Extra Hands are as follows:
- Raise enough money to be a self-supporting chapter with a balanced budget. This will be accomplished via fundraisers (Western event, Driving 4 Life Challenge, winter flower sale, 10,000 Villages store shopping and goodies, fall fun run, student pledge and ALS advocacy campaign (which is called "Plant the Seeds"), grants and local/national individual contributions.
- Create a comprehensive plan to publicize fundraisers (local media contacts, Web and fliers).
- Create a formal network for both family and volunteer recruitment via a strategic plan. This will help streamline recruitment practices and decrease time commitments. This will be accomplished by creating solid and reliable contacts within the local community (eg. Muscular Dystrophy Association, local schools, PALS Ambassador, etc.) and improving on our local program (e.g. lecture series, assistive tech library, etc.).
- Increase family involvement to 50 percent of ALS families living in the Treasure Valley.
- Once the above goals have been met, expansion into the Ontario, Payette, Mountain Home and Magic Valley areas.
Q: If you are the brains of the organization, who has the arms and legs to carry out your plans?
A: Sarah and I have an army of compassionate volunteers who carry out many of the jobs necessary to keep this local chapter of Extra Hands running and to carry out Extra Hands’ mission. Sarah and my wonderful wife, Jill, a part-time program manager, mainly act as my arms, legs and mouth piece. Also, we have created a local program manager group, which consists of Jill, Sarah and three volunteer program managers: my mom, Connie Stauts, a close family friend, Kristi Pardue, and my sister, Keri Noll. They have been my closest advisers and have been very active in the day-to-day activities of Extra Hands. As I have stated above, many of my friends and family have been extremely supportive, especially with Extra Hands. Without the help of every person mentioned above, it wouldn’t be possible for me to be the program manager of the Boise chapter of Extra Hands. For more information on who helps me and how our chapter is organized, go to our chapter Web page.
Q: Why do you do this? Help others? Help yourself? (I ask this because I would be tempted to remain in bed watching soaps on TV.)
A: To answer this I would have to go back to the day I was diagnosed. That day, as you can imagine, was extremely tough on me. I was a newlywed young man in my 20s and just beginning my career with many dreams and goals ahead of me when I was told I had ALS, had two to five years until I would die, and essentially there was nothing I could do. After that, I went into a deep depression. But it didn’t take long for my stubbornness to kick in and a nudge from a dear friend, Dave Kugler, a premed student at College of Idaho, and my sister, Keri, to get me back to living. Ever since I was a child, when someone told me I couldn’t do something, it made me want to do it even more. And eventually I couldn’t accept the notion that I couldn’t do anything about my diagnosis. I eventually created a Web site to assist PALS and their families with help from Dave and my sister. During my research for the Web site, I came across an organization that I knew the Treasure Valley could use and I wanted to get involved with. That organization was Extra Hands, and it met my expectations for what I wanted to do with my life. I wanted to advocate for PALS and help them improve their quality of lives. The rest is history. For more information on my personal story, go to JoesALSadvocacy.com.
Q: Don't answer this if it's too personal for the story, but how do you deal with knowing you have a terminal illness?
A: It makes me sad and sometimes depressed to think I’ll have to leave my family someday. 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 of Extra Hands the very best it can be often leads me away from those emotions and gets me back on track.
Q: Any other points you want to make?
A: If you have space, we are always looking for volunteers, funding and new community contacts for recruitment of students, mentors and PALS. Also, we are holding the 4th annual Bogus Creek Western event on June 9, and we are looking for donations for our silent and live auctions. Please call Connie Stauts at 888-7639 regarding donations.
Q: What are you able to do at Extra Hands?
A: I set agendas for meetings and participate in bi-monthly conference calls with our CEO alone and with the other chapters’ program managers. I created our Extra Hands Web page and do a lot of online work. I created, with help from others, our chapter’s Assistive Tech Lending Library and ALS lecture series that we are doing late February (28) and early March (13) at the Meridian Medical Arts Charter School. I create our financial plan, strategic plan and work closely with volunteers and Sarah on fundraisers, recruitment and creating community partners. I interviewed, hired and trained Sarah. I supervise Sarah, volunteers and ALS families. I recruit volunteers and families online and from other places as well. I played an integral role in creating the Extra Hands’ internship and PALS Ambassador positions. I have input into all major decisions locally and some nationally. I can’t do most physical things alone, so Sarah and my wife mainly act as my legs, arms and voice. I delegate many things I want to get done to volunteers, family and Sarah.
Q: How many people in the Treasure Valley does Extra Hands help?
A: Extra Hands, from the first of this year, have helped 17 PALS. We currently have 12 PALS that we help.
Q: What is the agency’s budget and how is it funded?
A: Each chapter has a budget of $75,000, which is funded by online donations, individual and corporate donors, grass-roots events, fundraisers, selling Extra Hands merchandise and grants.
Q: How common is ALS?
A: As many as 30,000 Americans have the disease at any given time.
Q: How many in the Valley have it?
A: 40-50 families.
