|
|
8/15/00 First Diagnosis From:
Rob Payne <rob@everydayisprecious.com> Thank you for your thoughts and prayers these last several weeks as Marcy has been through testing for the leg muscle spasms she has been experiencing for the last several months. We went for more testing today (Tuesday) and the doctors now tell us she has ALS - also known as Lou Gehrig's disease - a fatal neuromuscular disease. I've seen figures saying 50% of patients die within 18 months of diagnosis and other figures that say the life expectancy averages 3 to 5 years after diagnosis. Although I am learning, I don't know near enough to tell you about the disease. The best "Cliff Notes" source I've found (if you want to learn more) is at http://www.mdausa.org/disease/als.html Our next step is to get a second opinion. We spent today deciding which doctor to go to next. We have also contacted ALS support groups to get more information and help. The big time ALS specialists are in Wisconsin, Texas, and California. We are working on discovering which doctors are having any successes with experimental treatments, availability of appointment times, insurance coverage, fun stuff like that. It's OK to talk to me about it, but don't feel obligated to do so. I'm OK either way. I'm trying to keep Marcy from having to tell people about it over and over, so it may be better not to make a special call to her to talk about it. I'm asking you for your continued thoughts and prayers and asking you for patience as I may be spending less time at work as we fight this disease. Thanks again for thinking of us. Rob
|