Doris was the first patient I really became attached to and then had to watch die.
My career as a respiratory therapist was just beginning. I was fortunate to be in a training program that had been developed in the late 1960s by Miami Valley Hospital. It was a work-study program. After working full-time for two years, studying and completing all the courses and class work, I would be eligible to take the national exam to become certified in inhalation therapy (as we was called in 1970).
Doris was in a private room at the end of the hall. She was dying from one of the diseases we were assigned to study – ALS. Most people know ALS by the more commonly known name of Lou Gehrig’s Disease.
Lou Gehrig was one of the best baseball players to ever tie on a pair of cleats. He was an amazingly strong athlete. His record of consecutive games played of 2,130 was unchallenged for 56 years. Gehrig’s strength and durability earned him the nickname of the Iron Horse.
In 1939, Lou Gehrig voluntarily removed himself from the Yankee lineup because he felt his strength leaving him. He had no idea what was wrong, but he knew he was not able to run the bases or hit for power the way he used to. He retired from the New York Yankees the following year. Within two years, he died from the disease that would come to bear his name – Amyotrophic Lateral Sclerosis.
When I first met Doris, the disease had already stolen her ability to move her limbs. She could slightly wiggle her right foot. Other than that, she was totally paralyzed by the disease. She had a feeding tube that provided her with nutrition. A tracheostomy had been performed to help her breath.
Remember, this was 1970. Hospitals did not have the sophisticated patient monitoring and nurse call systems we now have. We actually tied a small bell to her right foot so she could signal for assistance.
Every hour I would connect Doris to a small breathing machine for 20 minutes. It was called an AP-5 ventilator. The slightest movement of her diaphragm would initiate a breath. The machine would inflate her lungs to a preset pressure limit then cycle off. She would then exhale.
With her treatment schedule, Doris was receiving ventilator assistance 20 minutes out of every hour. This was just enough to keep her oxygen levels up and her carbon dioxide levels down. It was just enough to keep her alive.
During the last few minutes of every treatment, I would clear her airway and then deflate the cuff near the end of the tracheostomy tube. This way, when the AP-5 cycled on, air passed through her vocal cords allowing Doris to talk without struggle. We enjoyed our conversations and talked about almost everything – including her disease.
One day, as I was caring for Doris, we listened to the news on her television. The news that day was very depressing; it told of the young men who were being killed and injured in Vietnam. The news focused on some of the horrific injuries our young soldiers were surviving; how they came home missing limbs, sight, memories and how they had to live with the horrors of their wartime experiences. We talked about the horror of war and the horror of Amyotrophic Lateral Sclerosis.
Doris could identify with these young men. She had been strong and vital until ALS stole her strength and she found herself confined to her own personal hell that was paralysis. Doris, her husband and family, her physician and all of us working with her knew that she would not survive. ALS is 100 percent terminal. A diagnosis of ALS was a death sentence in 1970 and it still is today.
Funding ALS research will someday lead us to a cure. Research is absolutely vital to finding the cure.
Pete Frates is a 29-year-old from Massachusetts. Although he is relatively young to have ALS, Pete is already totally paralyzed, has a feeding tube and is on mechanical support for ventilation. His father, John Frates, could not simply stand by doing nothing while his son died. John started the Ice Bucket Challenge.
The concept is simple: Pay $100 for ALS research or dump a bucket of ice water over your head. Many people are generously doing both. Two benefits are being realized from the challenge; millions of dollars are being raised for ALS research and awareness of ALS has increased dramatically over the past several weeks.
A few weeks ago, I participated in a cold water challenge for charity, but I haven’t participated on behalf of ALS research – at least not yet. Before this week is past, I will send a personal check to the ALS Association of Central & Southern Ohio, 1170 Old Henderson Road, Suite 221, Columbus, OH 43220. On the memo line, I am going to write, “In honor of Doris.”
I will probably also dump a bucket of ice water over my own head. The Ice Bucket Challenge may take my breath away for a few seconds, but ALS takes your breath away … forever.
Randy Riley is a contributing columnist and the mayor of the City of Wilmington.