Iraq, Afghanistan…pretty easy to find out how many lives have been lost, sacrifices made in these conflicts. But what about the other war most veterans and their families are unaware of? There’s no mobilization, no training for it, nothing can be done to prepare, no immunization, no p-tabs, and no weapon has been created to [...]
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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 addressed here are based on my personal [...] 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 [...] Finally the A/C has been turned off, windows opened and a gentle breeze tickles the patio wind-chime on it’s way in, for a dance with the curtains. Where did the month go? Who cares, as long as the 90 degree temperatures go with it! I’ve had to apologize more than once the last few days for [...] Just came in from walking Pepper with Rose. Ran into my good friends Paul, Dina and Sarah; they were just leaving their house to come over here to get their fish. Pepper was already tired from walking, and Sarah wanted to run him, so now he’s a mere panting puddle on the couch…contented. Life lately seems [...] It’s been a while since I’ve posted…been going through some extra difficulties not related to ALS, but it’s one of those things where you wonder what effect it may have on my ALS progression, if any. I’m sure you’ve heard how such stressors as divorce can shorten life expectancy. Well, this in the same ballpark. [...] I think I should apologize in advance for posting something like this, “unscrubbed” as such, but felt it worthy of posting. Very interesting read! Another case just reported to me of amyotrophic lateral sclerosis (ALS) associated with the use of statin drugs. Only a year ago the numbers of [...] 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 [...] If you know me, you know I enjoy adapting common, every day objects to make my life with ALS easier to tolerate, and God knows we need all the help we can get. Secondly, I also enjoy a good laugh, even those uncontrollable, an effect of ALS on the mind, the “pseudo-bulbar affect”. This video [...] 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”. [...] 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 [...]  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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