Welcome to my blog. I have had ALS for 10 years now.

Since I started this blog in June 2008 I've had amazing feedback. Family, friends, people from all over North America, Australia, Scotland, England, and places I can't recall, have commented, encouraged and corresponded. I had no idea when Cynthia taught me how to set this up, how much I would love posting and how many people would read it. I want to say THANK YOU to everyone who has helped propel this therapeutic exercise into a daily routine. All of you, both friends and visitors, are now part of my blog family. Welcome.

From Go Pro

From Go Pro
View from my living room

Wednesday, July 28, 2010


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.


Anonymous said...

Joy often comes after sorrow, like morning after night.. . . . . . . . . .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Anonymous said...

生存乃是不斷地在內心與靈魂交戰;寫作是坐著審判自己。. . . . . . . . . . . . . . . . . . . . . . . . . . . . . .