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04/19/2007: "Longevity (Part 1 of many)"

As I have said in my introduction to this blog, I am going to look at why I am living so long with ALS. The "textbooks" say that the average life after an ALS diagnosis is 2 to 5 years so why am I still here 12 years after my diagnosis (13 years after symptoms started) and without a ventilator. When my symptoms first started, I was progressing downward at an alarming rate. When I first got the ALS diagnosis, I thought that I would be fortunate to survive within the low end of the 2 to 5 years but it seems like once I got settled in with the knowledge of my fate and got into a comfortable routine with my caregiver Chris, the progression of the disease almost came to a stop. As a matter of fact, the doctor and staff at my ALS Clinic were even astounded that I was showing signs of improvement. To this day, even though my decline is slow, I still show slight improvement in some areas between visits. Stress seems to be my enemy. If I am under stress of any kind, that is when I get very tired and the progression accelerates again. So we try to stay in our comfortable daily routine which seems to be working for me.......That's all for now........Debbie

"As long as my mind holds its strength, with God's blessing I shall somehow survive."___Debbie Tope