In March 2005, my whole life changed. That’s when I received my diagnosis of ALS. Up to that point, I was in a storybook existence: I was a successful entrepreneur and leader in the fitness industry, living in a beautiful home with my wife and four children in Corona Del Mar, Calif. Then, just like that, my future was permanently altered by a serious disease.
Once the initial shock wore off, I decided I had two options: I could sit down, accept my fate and wait for the inevitable, or I could fight back. Guess which option I chose! The same will and determination I used in my successful business endeavors became my main weapons in my battle with this terrible disease.
My very first step in fighting back was to partner with the Muscular Dystrophy Association, which offers the best ALS doctors and health care professionals in the country. You also can count on MDA for up-to-date information, support groups, help in finding special equipment and understanding at every turn. Together, MDA and I formed “Augie’s Quest,” which coordinates fundraising events that benefit MDA’s worldwide ALS research program. My wife, Lynne, and I are honored to be the MDA ALS Division co-chairs.
Of course, without the undying love and support I get from Lynne, my terrific kids, and my extended family and friends, none of my success on the ALS battlefield would be possible. Thanks to their support, as well as the care I get at my MDA/ALS center and the miracles of modern technology, I’m able to serve on boards, write books, give speeches, laugh and joke with friends, and raise funds to find a cure — all in spite of ALS.
These Web pages offer an introduction to ALS, so you can begin preparing to meet the coming changes. MDA also gives each person with ALS copies of its very helpful and thorough books, Everyday Life with ALS: A Practical Guide and the MDA ALS Caregiver’s Guide.
From these pages you’ll learn several encouraging things about having ALS: that your diagnosis is in no way your “fault,” that many physical functions remain unaffected in ALS, and that better treatments and technological devices are constantly being tested and developed for every aspect of the disease.
It’s good to know that society is far more aware of people with disabilities today, and the laws entitle you to equal employment opportunities and access to public places.
You may be encouraged to know that people with ALS can survive much longer than expected. I know of others who’ve had the disease for 15, 20 or more years. Also, the Department of Veteran Affairs (DVA) has determined that ALS is a presumptive justification for veteran benefits, so if you have more than four years of active military service, be sure to contact your nearest DVA office.
As you adjust to your new lifestyle and ponder what your future will bring, know that across the country there are 200 MDA outpatient clinics, including more than 40 MDA/ALS centers, offering a comprehensive range of services and resources for people with ALS and their families.
In other words, you’re not alone.
Co-Chair, MDA ALS Division
Corona del Mar, Calif.