Reposted from NWI Times, Feb 19, 2020
ALS research has come a long way in the past few years. While a cure has yet to be found, current research has slowed progression for many patients, giving them more time while the hunt goes on. In addition to those affected, survivors, family and friends should be optimistic that tomorrow will bring us ever closer to the answers needed to defeat ALS for good. My positive outlook is backed by the progress I have witnessed for over 15 years since my dad passed away from Lou Gehrig’s Disease in the fall of 2003.
Doug Ordway was your average American, a steelworker from the Midwest just raising his family while enjoying weekends out hunting and fishing. It was the noticeably slurred speech at work that caused coworkers to believe he started showing up drunk. He also experienced muscle cramping in his legs and knew something wasn’t right. A few five-hour drives to the Cleveland Clinic led to his diagnoses in 1998 at the age of 39. I was 13, and my sister Jennifer just 10. Mom worked as a custodian in the school district and was also a reservist in the Navy but was pulled away when the war in Iraq started in 2003. Having lived through that experience, I’d say no patient or family is ever prepared for the financial, emotional and physical demands that caretaking requires. It is a ride for which there is no seat belt, only a bar to hang onto.
Back then, there wasn’t much in way of support groups. The social workers I met with in school were of little help because of their limited understanding of ALS and how it impacts family dynamics. The only assistive technology we had was a ramp to the front door for dad’s wheelchair and a sawed-off broomstick we used as a handle to help his walk to the bathroom. Converting the bathtub to a shower stall was probably the biggest game-changer to help him in the later years. While dad was given roughly three years to live, he made it over five, just long enough to see me graduate from high school and become the first person in my family to attend college.
Since his passing, I had little faith that any progress would be made to cure ALS because of its obscurity among other well-known diseases and cancers. That was until the ALS Ice Bucket Challenge came about in 2014 and raised $115 million — creating the biggest medical movement in history. Despite the fanfare triggering some childhood trauma, it created an unbreakable level of optimism that after so many years, this disease was finally getting the recognition it deserved and that it would indeed be defeated.
Between the computer-operated technology, assistive speech devices and support groups, the ALS Association and its chapters are helping people through the day to day grind while providing patients with resources to help them maintain their independence for as long as possible. Donations have helped open several ALS Certified Treatment Centers of Excellence, and research has led to the discovery and validation of five genes. Lastly, there have been dozens of drug and observational trials.
As we celebrate the fifth anniversary of the Ice Bucket Challenge this July and August, it is important to reflect on all the progress that has been made with those proceeds in the last few years. Going forward, it is imperative that we continue to push for education and funding by getting others to join us at the Annual Walk to Defeat ALS, the ALS Youth Challenge or the new “Challenge Me” campaign. Any bit of effort to raise money, raise awareness and continue the fight to defeat ALS will make all the difference moving forward.