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Hometown, state: New York, N.Y.
Age: 71
Family (spouse/partner; child, grandchildren): Wife, Maureen, and three grown sons.
Hobbies/Interests: Vocal music; opera; sports; politics; history; sitting at an ocean beach; movie classics.
Favorite quote: “Tempora mutantur, nos et mutamur in illis.” Times change, and we change with them.
Date of ALS diagnosis: November 1996
Tell us about your life before ALS: I was born and raised on a farm near Lindsborg, Kan., then obtained degrees in nuclear engineering from Kansas State University and an L.L.B. from Georgetown University. I then practiced a patent law specialty in New York City for some 40 years. Throughout my life, I pursued my hobby of studying vocal technique and singing in opera workshops, glee clubs and church choirs. I traveled extensively in the U.S. and Europe in my law practice and on vacations, and played my favorite sport of tennis on weekends with my wife and sons.
Tell us about your life with ALS: As I moved through the progression of weakness in the stomach and leg muscles, and from a cane to the wheelchair, I found that life remained fairly normal. But when I could no longer use my arms and hands to eat, drink or hold a book or newspaper, these disabilities were much more difficult to overcome. Still, I was able to continue my law practice for nearly seven years after my ALS diagnosis. Shortly after retirement, I suffered a respiratory failure, and now have been on a life-support ventilator, with a tracheostomy and feeding tube, for the past six years. Even with the tracheostomy, I was able to continue speaking for approximately the next three years. Just as voice production became impossible, I obtained the eye-responsive computer. Today, with a caregiver and my wife driving our ramp-entry van, I continue to get dressed, into my wheelchair and out to the park, a movie, or window shopping virtually every day. I have traveled by plane to Las Vegas and San Juan, Puerto Rico. Managing with all the equipment and routines is difficult and requires careful planning, plus patience and tolerance, but continued life is definitely worth “whatever it takes.”
Do you have a “life motto” or profound words to live by? Never say no; whatever opportunity comes your way, grab it and see where it takes you; trust your own judgment and instincts.
Has there been an “aha!” moment or a specific turn of events that has helped you live with ALS? I am a lucky ALS survivor because I had my respiratory failure when someone was sitting right next to me and immediately got emergency services. I had no forewarning and felt nothing that would alert me to my imminent death. It happened in the early evening and I didn’t wake up until the next afternoon — with a tracheostomy, ventilator and feeding tube. But my mind was crystal clear and I felt no pain whatsoever (except for my tongue, which was swollen from the emergency trach procedure). At that moment, I thought, “I can do this; I’m already in a wheelchair. So what does it matter if I hook a ventilator and carry a battery on the wheelchair?”
Tell us how ALS has brought new significance to any aspect of your life — family, attitude, hobbies/passions, career, etc.: ALS did make an impact on me as to the fragility of life, such that each one of us needs to make the most of each day in the best way we can with our innate abilities, whatever they may be. Also, ALS taught me the importance of working at what you like and making sure to enjoy your life to the greatest extent possible, so there are no regrets should a disability or sickness occur which squashes unrealized aspirations and dreams. No one should have to say, “If only…”
Is there anything else about you and/or ALS that you want to share with people who read your story? A diagnosis of ALS need not be a death sentence. At its core, “life” is the ability to understand and communicate. With today’s technology, ALS cannot take these abilities away from you. Thanks to this technology, I have written my memoir, titled Not in Kansas Anymore, using an eye-responsive computer. It is currently available online at Amazon and Target, and is expected to be online soon and available in selected Barnes and Noble stores.
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