The ALS Association

I Still Have Hope

Scott T. Ellwood City, Pennsylvania

In 2001 my father noticed himself losing strength. Standing 6'4" and weighing 245 pounds, he couldn't lift my 3 year old son out of the cart at the grocery store. When exercise and strength training didn't work he went to the doctor. March 2002 he was diagnosed with ALS. By early November he was on a ventilator and had a feeding tube inserted. Over the next 12 months my father who earned 12 varsity letters in high school, numerous football scholarship offers, a tryout with the Pittsburgh Pirates, and was invited to the Green Bay Packers football training camp by Vince Lombardi in 1962, had withered down to 158 pounds. Our family didn't have much luck with the local medical facilities. My father showed signs of neglect. Horrible pressure sores. Alarms going off constantly and not being tended to. Not being properly cleaned up after soiling himself. April 2003 my mother decided to bring him home. We set him up in the living room so he could watch tv and look out the window. Over the next 16 months my mom was his nurse. Insurance companies didn't like to pay for nursing for people who were being kept alive by "artificial means," so she slept on the couch next to him in the living room. She tried to sleep in her bed a few times but was afraid she would not be able to get to him if an emergency arose during the night, so she slept on the couch for 16 months so she could be near him. August 2004 he entered the hospital for the last time. He contracted pneumonia again and had to go on some very strong antibiotics. The drugs eventually caused his kidneys to shut down and he succumbed to the disease on September 14, 2004. People would ask me "how do you do it?" But when it's someone you love you find a way. Although there were some really bad times I never felt overwhelmed. I could handle changing my father when he soiled himself. I could handle feeding him daily through a tube. I could handle making sure his ventilator was working properly. All that endless "stuff" that needed to be done I could handle ok. But there was one thing I could not handle and it still haunts me to this very day. EVERY night around 9:00 pm after I gave him his evening meds so he could rest, he would look at me with tears rolling down is face, and he would mouth the words "please help me," and there was not one single thing I could do. He was begging for my help and I couldn't give it to him. I never felt so frustrated or hopeless before or since in the 10 years (almost) since his death. As horrible as this disease is I still have hope. I hope that funding can help families get the home nursing care for their loved ones so that these victims can be comfortable in their homes if they choose to do so. I hope that people are educated about ALS so that they understand how tragic it is. Finally, I just hope for a cure so that families do not have to deal with this horrific disease ever again.

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