Rest in peace, John. August 28, 1946 - April 6, 2012
It has been 13 years since John received his ALS diagnosis and I remember it like it was yesterday. I wasn’t with him when he was told. I thought he was going to go in for more tests. I was working as a tour guide at the capitol at the time. I got home from work and he was sitting in the living room. I asked him how it went at the doctor. He said “Well I have some good news and some bad news. The good news is that I know what I have. The bad news is that it’s ALS.” With this devastating news he was still trying to be light-hearted about it for me. We both cried so hard. And I had no idea at the time how much we had to cry about. I just knew it was an incurable disease. I knew about Lou Gehrig and his speech. You just don’t know until you go through it. John lived one year and eight months after his diagnosis. It’s been 11 years since his passing and I still cannot let myself go to how much he would have loved his 3 grandsons. John is 10, Leo is 8 and Hendrix is 7.
The sad news is that there is still no cure and every 90 minutes someone is diagnosed with this disease.
There have been new developments in available treatments to help manage symptoms and improve the quality of life for those with the condition. John and I received so much help in this area from the people at the St. Louis Regional Chapter/The ALS Association. They provide much needed free programs and services to support families in this area affected by ALS. When you receive this diagnosis, the Dr. does not give you a plan to follow. Thank God we got in touch with this agency. They take you by the hand and guide you with all of the tools you need to deal with the symptoms. As they say in their website, they; “empower people affected by ALS to live their lives to the fullest.”
Please know that any money you donate goes to research and also to the chapter so they can continue to provide the much needed support to patients and caregivers. I appreciate your thoughts and prayers in finding a cure.
Love,
Sue
Why We Need Your Help
Often referred to as Lou Gehrig's Disease, amyotrophic lateral sclerosis (ALS) is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of an ALS patient averages 2 to 5 years from the time of diagnosis.
Every 90 minutes a person in this country is diagnosed with ALS and every 90 minutes another person will lose their battle against this disease. ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries.
This crippling disease can strike anyone. Presently there is no known cause of the disease though support is bringing researchers closer to an answer. In the mean time it costs an average of $200,000 a year to provide the care ALS patients need. Help make a difference and donate or join a walk today.
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