I have moments/days when I feel the fear and I have days(the majority) when I don't even think about it. The most difficult times are when I have to adapt to new props, techniques, losses. Adapting to the walker and then the power chair was easy as they both gave me freedom/independence. Adapting to help with shower, dinner, drinking, etc. was more difficult--it seemed such loss of independence and made me feel less 'normal'. Losing all strength in my hands will be a big one. Legs I don't miss much, but arms and hands are my lifeline for 'going it alone'. Feeding tube, BiPap, I shall learn when the time comes(soon). Trache will take some mind over matter, but I know I can do it.
At my check-up 2 wks. ago, FVC(breathing input and output) was 57%--normal for my age is around 80%. I go again in October and if it drops I'll be scheduled for a feeding tube. Although I can still eat most foods they don't like to do the operation below 50%. I must have it for the future. How else can I get my Starbucks' buzz??
In general I'm feeling fine. My friends, Care Workers, and Family keep me in good spirits.
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