Amyotrophic Lateral Sclerosis, more commonly known as Lou Gehrig's Disease, dramatically impacts people no matter how it enters their lives. ALS is a neurodegenerative disease that slowly robs a patient's body of the ability to move - eventually paralyzing the person, while most often leaving his or her mind clear and unaffected.
I once heard the wife of an ALS patient describe ALS as a tsunami. You don't see it coming and as soon as it hits, your whole life is turned upside down and it will never be the same. It is estimated that between 400 and 650 Hoosiers are currently living with ALS, which is a swift and deadly monster. The estimated life span for someone diagnosed with ALS is two to five years. There is no known cause or cure.
Steve Holdaway was enjoying life with his wife and three children in Indianapolis. He built a successful career in sales and umpired softball games in his spare time. One day he noticed difficulty as he tried to sign his name to receive his umpiring paycheck. A few doctor appointments later, he was left with a death sentence: an ALS diagnosis. Over time Steve has lost most functioning in his right arm, making everyday tasks a challenge. Steve is currently experiencing the onset of bulbar symptoms, a weakening of the muscles in his face and throat, which leads to difficulty in speaking and swallowing. Due to his disability, Steve was forced to quit his job and continues to lose the ability to accomplish even the simplest of tasks such as cutting his own food and chewing it. He says the biggest challenge of having ALS is the mental aspect and trying to stay upbeat. "One day you can do something and the next you can't, and then maybe you can one more time, and then it's gone," he said.
It may be surprising to hear that some ALS patients consider Steve fortunate. This is because he has been living with ALS for close to 10 years and most patients don't survive half that long. Each ALS course is different and Steve has been blessed with an unusually long course.
Fortunately for Steve and other people afflicted with ALS, there are services available to help while they cope with this debilitating disease. The ALS Association is the only non-profit organization dedicated solely to the fight against ALS. The Indiana Chapter serves the entire state. The ALS Association of Indiana offers many services to those with ALS including: seven regional support group meetings with one in Warsaw, an equipment loan closet, annual caregiver retreats, advocacy services, Living With ALS manuals, a state resource guide and an ALSA Certified Center of Excellence located in Indianapolis. The patient services staff is available to provide support including disease management options and psychosocial support for the entire family.
May is ALS Awareness Month. Representatives from the Indiana chapter will be traveling to Washington, D.C., to participate in the National ALS Advocacy Day and Public Policy Conference on Capitol Hill from May 10-12. During the conference they will be meeting with Indiana Senators and Representatives to educate them on how ALS impacts the lives of those who are diagnosed, as well as their families and friends. The Indiana Chapter will work diligently to persuade legislators to vote in favor of The ALS Association's 2009 Legislative Priorities. To view a list of these priorities and other information regarding ALS, go to the Indiana chapter's Web site at www.alsaindiana.org, which also contains information.
