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Hometown, state: Kansas City, Mo.
Age: 61
Family (spouse/partner; child, grandchildren): Husband, Gary, and two grown sons.
Hobbies/Interests: Prior to ALS: music, ice skating, playing piano and dancing. After ALS: listening to music, e-mail, movies, patrolling the ceiling with my eyes, and fundraising for ALS research.
Favorite quote: “Imagination is more important than knowledge.” – Albert Einstein
Date of ALS diagnosis: April 1995
Tell us about your life before ALS: I have always been a positive person. I have loved and been loved by a magnificent man. Some of the things I miss most from before my ALS diagnosis are playing the piano, dancing with my husband, twirling when I am full of glee, power shopping and driving. I am fortunate to have been very successful in both my personal life and in the business world as vice president and general manager of US Filter-Jet Tech.
Tell us about your life with ALS: I never asked, “Why me?” The hardest thing about ALS is slowly letting go of capabilities. I can think and feel, but can no longer move anything except to blink my eyes. I have been on a ventilator that breathes for me for the past 11 years. I know in my soul that I will beat ALS. Having faced death eight times in the 14 years since my diagnosis, in many ways I have already beaten ALS.
Do you have a “life motto” or profound words to live by? If God brings you to it, God will bring you through it.
Tell us how ALS has brought new significance to any aspect of your life — family, attitude, hobbies/passions, career, etc.: My two sons have grown through my experience with ALS. Having ALS has given me the opportunity to witness more love and support than I could have ever imagined.
Is there anything else about you and/or ALS that you want to share with people who read your story? I want to tell you about my pit crew (terrific care team): Gary – husband, resident pharmacist, care team leader; Nancy – sister, full-time caregiver and personal assistant; Tyler – son, multi-tasking assistant; and Linda Gerding – best friend and weekly visitor.
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