Surviving ALS

My name is Dick Charles and I was diagnosed with ALS in 1976. The disease ran its normal course (if there is one) and I coped with the changes as best as I could. During the first few years I learned everything about this disease as I could along with investigating the health insurance coverage in effect when I was diagnosed. The knowledge gained led me to at least consider that life on a ventilator was a possibility.

There were many things to contemplate before making a decision of that magnitude.

Would my health insurance cover 24 hour skilled nursing care?
How would this decision affect my family?
Could I tolerate the inactivity?
Would I be able to continue working?

I decided to seek out people who had made the choice to continue living on life support and observe how they were doing. I discovered some remarkable people who were living full and productive lives along with others who were experiencing their worst nightmare. Ultimately, I made the decision to take the risk and it turned out to be the right choice for me.

Over the last 18 years that I've lived on a ventilator, many people have asked me for advise on the subject. I have tried to be honest with each of them by presenting every aspect of the decision. I'm not an advocate of going one way or the other because it is a very personal matter that requires a great deal of soul searching. I can assure you that to live as I have chosen to is not a walk in the park. I'm willing to discuss the situation with anyone who is trying to make an informed decision.

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Copyright (c) 2001 Richard Charles All rights reserved.
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