Finding my second wind
Walk to Defeat ALS
The sixth annual benefit walk to help those afflicted with amyotrophic lateral sclerosis takes place Oct. 3 at the Park at Riverwalk in west Bakersfield. Teams are forming and sponsorship opportunities are available. For details, 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. While local doctors were familiar with ALS, most had only seen a few patients during their careers. There were no special services or clinics here. 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. Hundreds of people came together to lobby for better Medicare and Social Security benefits for ALS patients. I was not alone in my fight. We met Congressman Bill Thomas and Sen. Barbara Boxer. Together, we were able to raise awareness and ultimately affect legislation that has and will benefit ALS patients for years to come.
In the spring of 2000, we began attending a patient support group in Westlake Village, 100 miles away. There I met my mentor, Carl Frova, who taught me to face this disease with a combination of stubbornness and humor. What surprised me was how much laughter was generated by a group talking about a life-threatening disease. Although doctors could explain the clinical aspects of this disease, the people at the support group taught us how to live with the disease. Attending group meetings was an exhausting, all-day affair, but we learned so much that we kept going for four years. We wanted to start services in Bakersfield because we knew there were more people who needed help here. When we started the Bakersfield Walk to Defeat ALS in 2004, the response overwhelmed us. Stacy and I began to realize what a generous and caring community we live in.
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. These seminars unite medical professionals, equipment vendors and ALS families to discuss research and treatments for ALS patients. Soon thereafter, an equipment loan pool was established to provide temporary usage of durable medical equipment for local patients. This is critical because the condition of many patients changes rapidly, and so do equipment needs. As we all know, insurance companies don't react quickly. 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 already received specialized 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. Twice we have opened our remodeled home to the group to discuss accessibility issues. This group has given Stacy and I the opportunity to make a difference in other people's lives.
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, who holds a chemical engineering degree from Texas A&M University, is a petroleum engineer on long-term disability leave from Chevron Corp. He wrote this article using voice recognition software.
