[Previous entry: "My Day Out"] [Next entry: "Wal-Mart Mishap"]

05/28/2007: "Spiders and Doctors and Bi-PAPS - OH My!"

I have been using a Bi-PAP with a full-face mask every night for about six hours a night steadily for the past 3 or 4 years. I feel comfortable with it for the reason that not only am I less fatigued during the day and without those horrible headaches but the awful thought of a spider crawling in my mouth or up my nose because the full-face mask covers me! I fear spiders more then dying! Being paralyzed with fear along with being paralyzed physically with a big hideous Wolf spider crawling up the pillow in the direction of my face, what a nightmare! Thank goodness I was awake at my computer during that episode and had Karleen to rescue me! She is fearless! She picked him up and put him outside! I know they are harmless and beneficial but they are creepy and I don’t want all those legs walking on me! Anyway, using a Bi-PAP at night helps to keep me alert during the day.

I am so looking forward to my ALS clinic visit coming up in mid-June. We go to the Cleveland Clinic’s ALS Clinic every six months. My first appointment starts at 8:00am so we always drive up the night before and get a room at the InterContinental Hotel right across the street; very convenient. I am anxious to have my FVC breathing test results as well as my ALS-FRS score. They are good indicators at how I am really doing. I also need to ask my Doctor about the cognitive changes in ALS patients which seem to be affecting me. I also need to ask about Quinine Sulfate, which is no longer available, to see if there is a good substitute. I still have some left and have been taking one every other day to make them last.

That is all for now………….Debbie