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05/07/2007: "National ALS Awareness Month"

I do believe that as a PALS that I have some responsibility to do my part in making my community aware of ALS so I wrote a letter to to the editor of our local paper. I hope that it works and that people do read those letters to the editor. Maybe they will want to do another story about me. That would be nicer! Here is a copy of the letter:

To the Editor:
The month of May has been designated as National ALS Awareness Month. ALS, which stands for Amyotrophic Lateral Sclerosis, is a neurological disorder in which the motor neuron cells in the brain and spinal cord die which leads to paralysis and eventual death of the patient usually in 2 to 5 years. The disease is better known as Lou Gehrig's Disease named after the famous baseball player who died of the disease in 1941. Approximately 5,600 people in the U.S. are diagnosed with ALS each year. The incidence of ALS (two per 100,000 people) is five times higher than Huntington's disease and about equal to multiple sclerosis. It is estimated that as many as 30,000 Americans may have the disease at any given time. The disease has no known cause and still has no known cure.
I have been living with the disease for 13 years now and though ALS has taken away the use of my arms, left my other muscles barely usable, left my voice barely understandable, and is making it hard to breath it has not taken away my spirit and my hope. I will not surrender my faith, my hope, my courage or my laughter to this vicious disease. I now have 4 grandchildren and often wonder if they question as to why grandma doesn't hug them or why they can't understand me. That is the cruelness of this disease. Why have I lived 13 years with ALS and others only a few months? There are still more questions than answers to this disease. Though great strides have been made in research, the cure still seems to be miles away.
Fairfield County has had it's fair share of ALS patients who have lost their fight with the disease and unfortunately there will be more but remember there are still patients out there like me who are still hoping and searching for the cure. I just ask each of you to understand what ALS is and how it affects the patients and their families who live with it daily. If you would like to know more about ALS or would like to help in fighting this disease there are many great organizations such as ALSA or the MDA/ALS which are very beneficial to ALS advocacy and a great source of information.

Debbie Tope
Baltimore