Had a great time attending Hillary’s graduation last weekend; especially getting to meet much of Cindy’s extended family at the grad party Friday night. If I were given the chance to select a family of in-laws, I honestly believe I couldn’t have done any better. I’m a very lucky man to have such a loving, [...]
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For the month of May, ALS Awareness month, I’m doing my best to chronicle what it’s like to have, live with or care for someone with ALS. Although many of the difficulties, thoughts and complications [...] For the month of May, ALS Awareness month, I’ll be doing my best to chronicle what it’s like to have, live with or care for someone with ALS. This is not necessarily my story of life with ALS, but it could be yours, in the blink of an eye…or, the twitch of a muscle. Day 1 Again, [...] ….when you’re in a Permobil power chair? Here’s the story… I believe most anyone in a power chair can relate to this, whether you have the tilt/recline functions or not. Last weekend, I’d just finished being dressed, and needed to scoot back in my chair. Cindy had just put lotion on the soles of my feet, [...] Hard to believe, but another ALS walk has come and gone, and although there were around 100 more people than last year’s 600+, we only raised about half the money in comparison, as of the walk’s closing ceremony. Very disappointed we didn’t get most creative banner or team t-shirt. The winning banner was commercially-done, I [...] It’s been one of those weeks. Started feeling a little throat irritation Tuesday night. Not too bothersome Wednesday, but by the time Thursday morning came, and time for my trip to the VA for a pulmonary function test, my throat was inflamed, which made me think it was my lungs, so I began thinking it [...] …through the ALS jungle. Why is my tail-bone hurting? Less cushion back there? Need more air in my roho cushion? Where’s the morning headache coming from? Is the bipap no longer sufficient for proper respiration? (GULP!) How long will I be able to effectively use my chair’s foot control without putting anymore holes or marks on [...] If there appeared a genie granting me three wishes, one would be not to have lived the last 48 or so hours. More on that in a minute. I just decided to put all the emails, facebook and RSS feeds on hold for a while to write this sorely needed entry. If nothing else, this [...] It’s a beautiful Sunday morning. I was just thinking about one of those “getting to know your friends” email surveys I’ve received so many of in the past few years. One of the questions was always “What’s your favorite day of the week?”, and I always replied with “today” or “all days ending with “y”. [...]  Because I have only limited functional use of one hand, I use Dasher, as shown here, to type without a keyboard, only a mouse. Great for loss of use of one hand, even if there's no fine motor control in your better hand. Also adaptable for eyegaze and head-mouse use. Give it a try! I supplement Dasher with an on-screen keyboard called Skeleton Key, created by a PALS, Dov Wisebrod.
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