On June 4, ALS in the Heartland proudly celebrated the agency’s five year birthday. Here, founding Board member, Shirlee Goaley, shares her family story, and the history behind ALS in the Heartland.
“The phone rang as we were preparing to leave for the evening. It was the neurologist telling us he had the results of Don’s tests and would we BOTH come in to the office tomorrow to go over them. We were almost giddy as we were driving, glad that after enduring months of doctors’ appointments we were finally going to find out what was wrong, and could get relief with the right kind of medicine. The next day the news was not quite so optimistic. The doctor said all tests indicated that Don had ALS, and he didn’t know of any cure.
We left the office and Don said “Well, at least we have an answer, some people never know.” My inner voice was screaming “but I don’t know anything about it and don’t know anyone who does.” Over the next several days I researched and devoured everything I could find relating to ALS. I read and reread every word, hoping to find an exception to the dire statistics. Coming to the realization that there is no silver lining, I struggled through a range of emotions. After offering a prayer for strength, we embarked on this ALS journey.
Don was a people person, with love of family as a top priority. He was an Iowa boy, transplanted to Nebraska after graduating from Creighton University. He became a partner in the Arthur Andersen & Co. CPA firm, and because of his expertise in insurance accounting, was lured away by a client, to become Senior Executive Vice President/Comptroller of Mutual of Omaha. He retired as Senior Executive Vice President in charge of the Mutual affiliates. This highly motivated, successful, full of life, individual was diagnosed with ALS at the age of 67. Seeing a vibrant 6’2”, 240 lb. man you love suffer the effects of this horrid disease was agonizing to watch. This “in charge” guy became paralyzed, unable to swallow or speak, and was totally dependent on others for his existence. He lost his battle with ALS February 5, 2004.
I am blessed with a wonderful family who offered both emotional and physical support throughout this journey. Knowing others might not be so fortunate, and could benefit from our experience, on June 4, 2005 we helped establish ALS in the Heartland. We serve patients in our own community, and are proud to be able to report that more than 80 cents of every dollar donated to the agency goes directly toward patient services, while the remainder goes toward operating expenses and research and advocacy efforts. Our Board of Directors all either lost a loved one or have personally been touched by the disease, so it is a mission for us, not a job.
There is a statement that says it takes a village to raise a child. Certainly ALS is not a journey that can be traveled alone. Our patients and caregivers become forever members of our supportive family, and our village is ALS in the Heartland.”
