After 10 years with ALS, my second wind
The 6th Annual Walk to Defeat ALS, held Oct. 3 at the Park at River Walk, attracted 27 teams representing people who have either passed away from ALS, or in honor of ALS patients who were personally present.
The organizers raised $69,272 that day, and donations are currently at about $70,000. Funds continue to come in, and organizers hope to hit $75,000 this year. Over the past six years, donations associated with the Walk to Defeat ALS have surpassed $500,000.
To help, call Stacy Inman at 699-0914 or 664-1226, or visit www.alsala.org.
For 10 years, I have lived with ALS. Amyotrophic lateral sclerosis takes a person's life by paralyzing the muscles, slowly taking away the ability to walk, talk, eat and eventually breathe.
I've had many bad days, but Feb. 20, 2008, stands out. I was attending the annual meeting of the Greater Los Angeles Chapter of the ALS Association, or ALSA. My wife, Stacy Inman, and I were being honored as volunteers of the year for our fundraising and advocacy efforts in Kern County. Little did the audience know that I was struggling to breathe.
Earlier that day, at Cedars-Sinai Medical Center, my breathing capacity had tested at less than 20 percent of normal. My lungs were slowly collecting mucus that my weak diaphragm could not expel. I was dizzy and exhausted, but survived the evening.
ALSA recommended a cough assist machine. My local pulmonologist had doubts about the machine and its effectiveness. Refusing to take no for an answer, I got a prescription and medical justification for the cough assist from the doctors at Cedars-Sinai.
The machine is awkward to use at first, simulating a cough by forcing air into and out of your lungs rapidly. I did four treatments daily. My lungs began to clear up and work more efficiently. Over the next 18 months, my breathing capacity improved.
That is rare for ALS patients. I have more energy and no longer fear choking on my own mucus. I found my second wind.
Rewind back to 1999. I had just received the devastating diagnosis of ALS. I had a wonderful wife, a young son, and about three to five years to live, according to statistics. Despite the odds, Stacy and I decided to stand up and fight rather than lie down and die.
We started by going to Washington, D.C., in 2000 for ALS Awareness Day, and that spring we began attending a patient support group in Westlake Village, 100 miles from Bakersfield. There I met my mentor, Carl Frova, who taught me to face this disease with a combination of stubbornness and humor. But attending group meetings was an exhausting, all-day affair. We wanted to start services in Bakersfield because we knew more people needed help here. When we started the Bakersfield Walk to Defeat ALS in 2004, the response overwhelmed us.
What has transpired since that first walk in 2004 is nothing short of phenomenal. One month later, we held our first support group meeting in Bakersfield. A few months later, ALSA hired a Kern County case manager. A year later, we held the first of two "Ask the Experts" seminars in Bakersfield. Due in part to the donations from Kern County, the Cedars-Sinai Center for ALS Care was opened in March 2007. Many local patients, including myself, have received care from this clinic.
I am most pleased with the success of our support group. As a 10-year survivor of ALS, I can answer questions from newly diagnosed patients. Years ago, I was the newly diagnosed patient asking questions. Now it's time to give back. With her expertise, Stacy, a public-sector attorney, has advised many families on insurance issues and the legal aspects of the Americans with Disabilities Act. None of this would have been possible without the generous support and caring spirit of our neighbors. It wasn't the cough assist machine. The people of Kern County helped me find my second wind.
Michael Gagner of Bakersfield, a petroleum engineer on long-term disability leave from Chevron Corp., wrote this article using voice recognition software. His article, edited here for space, is our September letter of the month.
