ALS Me - Gary's Story

My name is Gary. I was a school teacher for 37 years in the state of Washington. I had planned to teach one more year, but this thing called ALS forced me to retire.

I had worked at staying healthy for years, and when I turned 60 a couple years ago, my daughter assured me that 60 was the new 40. I felt pretty good about that until I started having trouble walking. I went to the doctor and he tested my blood and found that my thyroid was out of whack, so that’s what he treated. It didn’t help; and finally I went to a neurologist who determined that there was something serious going on with me. After seeing a specialist, I was told I had some form of motor neuron disease. Several months later it was determined that I have ALS.

In less than a year, it has effected my walking (I now use a walker and wheelchair), my hands are weaker, my breathing capacity is diminished (I use a BiPap machine at night, and sometimes during the day.) and I recently had a PEG feeding tube put in my stomach.

This has not been fun. It is especially difficult for my wife who has to do so much to take care of me. She even has to do the manly things I used to do, like take out the garbage. Of course there is no more cutting the lawn, (not that I liked that!) So much now falls to my wife. My children and grandchildren don’t quite know how to deal with it either, except they know that I can’t do much with them anymore.

I know there are many diseases that are devastating, but because most people die of ALS in two or three years, it seems to go relatively unnoticed. When my wife or I tell someone that I have ALS, they either give a blank stare, or look very sad because they had someone they love die from ALS.

At present, there is almost nothing that can be done for people with ALS except to treat their symptoms. Rilutek, the only FDA approved drug for ALS does virtually nothing.

No one would wish this disease on anyone; however, it seems that only when high profile people get it or pay attention to it is their any public awareness. It was more than 60 years ago that Lou Gehrig died from this disease that bares his name. What has been done since that time to treat or find a cure?

It is my prayer that by raising awareness, there will be a nation hue & cry to do something about this ongoing yet unknown disease.

My story is just beginning. And they don’t usually last very long. Two springs ago my wife & I visited our son in New York where I first noticed something was wrong. Last spring, I had been diagnosed a month and had a lot of trouble walking, often using a wheelchair. This spring I will depend on one for all my mobility. I pray that I will be able to return in a year.