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 [...]
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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 [...] 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 experience, I’m including [...] 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 experience, I’m including the experiences of other [...] 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 experience, I’m including the experiences of other PALS (People with ALS) [...] 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, [...] This is from the BraunAbility Voice blog. Although it no longer applies to me, I thought it’s worth sharing. Posted by Jack on Tuesday, April 20th, 2010 You may have heard that Toyota is recalling some 600,000 Sienna minivans due to a spare tire cable corrosion issue. You should know this issue does not affect any BraunAbility/IMS [...] ….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 [...] 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 [...] Dear Friends, It’s time once again to dust off your walking shoes and join me as a member of my walk team, “Steve’s Striders” in our quest to help find a cure for ALS. The Fayetteville NC Walk to Defeat ALS is one of several walks held throughout the state each year, by the Jim “Catfish” [...] Plenty new terminology around this “White house” these days, especially for Cindy, Maura and the caregivers. Received my Dynavox Eyemax eyegaze-controlled computer, sort of the boy scout knife of communication devices for PALS and others who have lost the means to communicate as well as the use of their hands, or expect to. I’m not [...] Subject: Doctors An Israeli doctor says, “Medicine in my country is so advanced that we can A German doctor says, “That is nothing; we can take a lung out of one I’ve met some highly-skilled, mechanically-inclined people in my short time here…well, seems short anyway, but when I consider I’m closer to a “half-century”, YIKES! Never mind that… I didn’t learn how clumsy I was with tools until Mr. Kraniak’s (real name) 9th(?) grade auto mechanics qualification test…something akin to tightening a nut on a bolt protruding [...] As Cindy and Maura clang away in the kitchen, organizing and cooking a meal for a close friend who recently had surgery, I’ve been hammering away at the dasher keyboard, attempting to clean up this site a bit…hoping someone notices. In addition to a cleaner look, I’ve added a link submission form, and began the [...] I’ve found a simple way to raise money, every time I shop online or search the web, and I think you should check it out! I’m using iGive.com to raise money for The ALS Association of NC, every time I shop online at any of their 774 participating stores. And when I search the web through iSearchiGive.com [...] Looking forward to this new show on CBS tonight at 9:00. “Live for the Moment”, hosted by Jeff Probst of “Survivor”. Hopefully they’ll put enough emphasis on the real-life cruelty that ALS puts on about 30,000 American families at any given time to finally make a difference! Sleep Apnea | EasyLife. Philips Respironics has just introduced this new CPAP/BiPAP mask that they claim “readily adapts to facial contours to create an instant and self-adjusting seal, nearly eliminating the need for nose bridge and forehead pad adjustments“. That’s an uncomfortable pill to swallow Philips, but I’d be perfectly willing to review the product [...]  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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