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Hometown, state: Bloomington, Minn.
Age: 66
Family (spouse/partner; child, grandchildren): My wife Holly.
Hobbies/Interests: Cycling, ski racing, photography, writing, musical performances.
Favorite quote: Play for more than you can afford to lose and you will learn the game.
Date of ALS diagnosis: September 2004
Tell us about your life before ALS: Owned specialized table manufacturing company. Designed computer-based inventory-control software. Lived in five countries over 30 years including UK, Australia, South Africa, Iran. Founded Twin Cities Bicycling Club. Road bicycle average 2,000 miles a season for over 19 years. Raced on Masters mountain bike team. Produced and directed industrial business films and videos (with David Frost). Performed in musical groups in U.S., UK and Australia, the most notable Dewey Decimal and the Librarians formed while attending Macalester College in St. Paul. You will find our album today in Library of Congress.
Tell us about your life with ALS: Managed my table business for first three years until I had to sell it in 2008. Purchased iBOT wheelchair, and as result of purchase became a consultant and lobbyist for Johnson & Johnson, traveling to Washington, D.C. on two occasions. Used the iBOT for trade shows and to go up steps. I stay ahead of disease progression by finding and utilizing any available technology. Modified home for roll-in shower; put ceiling track in to move me from bed to bath; today spend 18 hours a day in hospital bed with great caregivers and friends.
Do you have a “life motto” or profound words to live by? Word hard; play hard; trust your instincts; find your Love.
Has there been an “aha!” moment or a specific turn of events that has helped you live with ALS? No, I tackled ALS as I have any other business situation — accepted fact I had an incurable disease and set out to give myself and family the quality life and environment I could conceive and pay for.
Tell us how ALS has brought new significance to any aspect of your life — family, attitude, hobbies/passions, career, etc.: Compassion.
Is there anything else about you and/or ALS that you want to share with people who read your story? ALS can be a very lonely disease because there are so few of us. Find another with the disease you can talk to about the progression. I am also blown away by the many people ready to help all of us with our daily living. Lastly, there needs to be a great deal more visibility about ALS if we are to find a cure. People need to think out of the box to find research money, i.e., contact movie stars, athletes, business leaders and politicians…wherever the money is…and just go and ask for some!
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