Lou Gerhig's Disease and Assisted Suicide

Bright Angel Trail Grand Canyon - picture by JoAnn Sturman

by Lee Marano

From the very first time I saw Dr. Jack Kevorkian administering lethal injections to terminally ill people, who voluntarily chose to end their pain and suffering, I believed he was doing the right thing. I still do.

I was diagnosed with Amyotrophic Lateral Sclerosis (ALS), more commonly known as Lou Gerhig's disease, in September 2010. My symptoms started to manifest about eighteen months before my diagnosis. I noticed I was losing significant distance playing golf and could not comprehend why. It took about eighteen months with multiple office visits to various specialists to obtain an accurate diagnosis. Essentially, the diagnosis was reached through the process of elimination. Not much is known about ALS because it is a rare disease that attacks one in 100,000 people. At any given time, there are only 30,000-35,000 active cases in the United States. Approximately 5000-6000 cases are diagnosed each year.

There is no known cure for ALS; it is progressive and fatal. Average time frame from diagnosis to passing is 2-5 years. Some people have lasted 10 years or more. ALS is a motor neuron disease where nerve cells are attacked by a chemical named glutamate which is produced by the brain. When the nerve cells are damaged and eventually destroyed, it causes the cells to send erratic signals or no signals to the voluntary muscles, resulting in muscle atrophy throughout the entire body. When the muscles atrophy, it causes paralysis throughout the system.

As the ALS progresses you are able to see the steady deterioration and weakening of your body. My major problem is weakness in my legs, hands, and reduced lung function. There is relatively no pain from ALS. I do have what is called "fasciculations" which are random muscle twitches over various parts of the body. Occasional muscle cramps occur, but the duration is short and tolerable. When ALS reaches the advanced stages, the individual cannot speak, swallow, or breath. They require a feeding tube and ventilator. The only movable part of the body are your eyes. Can you imagine being encased in totally immovable body with a brain that still functions cognitively? I consider that torture. That's why my Health Care Directive, developed many years ago, stipulates that I won't be provided feeding tubes or a ventilator.

There are some ALS patients who are willing and able to endure this massively degenerating and devastating disease. I'm not one of them. I do not want to see my loved ones put through this agony. I have had numerous conversations with highly educated professionals and not one person said I was wrong in my thinking.

I have never been an advocate of what I call convenience suicide. Suicide decisions based on divorce, bankruptcy, etc. I firmly believe that terminally ill patients -- regardless of the disease ---should have the right to decide when its time to die with dignity. I am certainly not saying that terminally ill people should be euthanized, what I am advocating is a law that will allow those people, who want to end their suffering, to be allowed to do so with professional help rather than do it on their own. To date my progression has been described as "mild to normal" and I am nowhere close to deciding to end my disease. When I decide to destroy ALS before it destroys me, I will not have died -- I will have escaped.

I praise the treatment I have received from Fresno UCSF and the VA; they have both been outstanding in their care.

I hope this message will motivate others to develop a ballot initiative, so that the voters can decide whether assisted suicide is a viable alternative for patients suffering from cruel and tragic diseases. If I can help, I am willing to do so. Other countries and states allow it --- why not California? It will provide the terminally ill freedom of choice. Don't we deserve that?