This past week has been nothing short of interesting to say the least. But what’s life if not completely the unexpected? Someone once quoted that “Life is what interrupts your best-made plans” and mine seems to be no exception. Since our return from Thomasville last Sunday night late, my normally routine three-day trip recovery has [...]
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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, [...] What’s not to love about spring? The trees are blooming, daffodils are reaching for the sun, the days are longer and everywhere you look there’s evidence of new or renewed life. Is it any different in those of us with ALS? Needless to say, pretty much everything is different for those [...] 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 [...] This upcoming new show portrays normal people with a reason to “Live for the Moment”. This one has ALS…but how can we adopt such an attitude without having received such a disturbing wake-up call as is a most-feared diagnosis? …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 [...] Okay, I get it that people just don’t want to be around negativity. I say this because I’ve been told I tend to hide what’s really going on in my head, need to be more transparent. Can we really raise enough awareness if we don’t reveal the ugly monster that is ALS? Before ALS destroyed my [...] Okay, doing my best to collect the many thoughts I’ve been having in mind for this. Why do they always seem to come when I’m not at my laptop? After my first trial with WordPress, and despite losing everything after the first week or so, I’ve decided to give it another shot, albeit, cautiously! I’m listening [...]  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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