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By Steve, on August 29th, 2010
Sunday morning, and Food Network on the tv, am I a glutton for punishment or what? My diet recently has been pretty sparse. My daily cereal processed with banana has gotten difficult. I’m often skipping trying to swallow anything for a can of Ensure in the tube. Anything with meat or grain has to be processed to a pudding-like consistency, and it’s still hard to get down. If anyone knows a trick for getting a steak or pizza into the same consistency as Maura’s meatless spaghetti, I have a proposition for you. I’m much too young to be eating old! I think Paula Dean should copyright her saying “ya’ll” because any time other Food Networks stars use the term, it sounds phoney. Anyone else think the same, or am I showing proof of frontotemporal dementia in ALS?
Wednesday will be two weeks into the bathroom renovation. They’ve got the roll-in shower flooring poured, on top of which will be ceramic tile. The plumbing, hvac and electric has all been relocated. The old glassblock window is out and framed-in for the new single row glassblock, just enough for natural lighting, but not so much that the bathroom is an oven with it facing the evening sun. Had a half-wall put in between the new single vanity and commode, sure makes the vanity area too small, may have to reconsider that one. Probably the most obvious change thus far has been the new opening from the hallway straight into the bathroom, which really lights up the hallway from the bathroom window. Also got the new patio-bedroom door in, which is full-light with the blinds between the glass, another daytime light source, and the blind can be raised, providing a great view of the pool, but we’ll have to see how much the new deck will hide that. Really missing just being able to sit under a hot shower. The new throne (shower/commode chair) is great. I’m taken-aback by it’s size and sturdiness for a pvc-framed chair. SO much better than anything else I’ve tried.
Tim Lafollette, another NC PALS, one of the “Young Faces of ALS“, is apparently in the ICU with double pneumonia and MRSA, doesn’t sound good. He’s only been trached a month or so now. My friend with ALS in Greenville, Jill, is also struggling, judging from an apparent guest-blogger (Cliff? Joel? Megan?). My prayers are with them and their families and friends. until next time, remember not to live, love or laugh unless you’re doing it out loud! SDW
By Steve, on August 22nd, 2010
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 [...]
By Steve, on August 14th, 2010
This new recorded speech device looks promising, with 90 hours of recording time, touch and switch scan access, plus built-in IR control for your remote gadgets. Check it out!
By Steve, on August 13th, 2010
Back from a few days in Thomasville. Cindy’s mom had a pretty major surgical procedure Monday. We got to the hospital about an hour after they took her back. We were pleased to see so many family members there in the waiting area…11 of us in all I think. Isn’t that what it’s all about, [...]
By Steve, on August 13th, 2010
2008 Dodge Caravan SXT, silver- 3.8 V6; AMFM CD MP3 radio, power everything including rear & side doors.
EXCELLENT condition
the rear load ramp itself is manual but easy & smooth, fit permobil 300 with room to spare, Qstraint lockdown, recent service, still some warranty remaining, new battery, 31907 miles
email for pics CRF8@aol.com
$26,900 Orlando [...]
By Steve, on August 6th, 2010
Hackers alter Wii controller for disabled users
University of Delaware students say they have hacked the Wii video game controller and the Wii Fit’s Wii Balance Board to be used with applications for disabled people.
Dubbed WiiAssist, the project adapts the infrared sensors in the Wii controller, which detects a Wii game player’s [...]
By Steve, on August 3rd, 2010
Maura and I just returned from walking Pepper. Love the evenings when the air cools and the sun has set. Ever wonder why people say “the dog days of summer”? As much as Pep loves to walk, I also know he doesn’t like the hot sun. Don’t reckon I would either, if I wore a [...]
By Steve, on July 22nd, 2010
This is my way of putting my mind at ease, spilling the web of brain activity into my blog through a scramble of mouse gestures on my laptray, via Dasher. After seeing Decaprio’s latest, “Inception” tonight, my brain could stand to expel some weight. Great movie, made me want to see it again one day [...]
By Steve, on July 16th, 2010
Saw “Sorcerer’s Apprentice” last night with Paul, Sarah and Maura. Great special effects, typical Cage, pretty predictable Bruckheimer. Props to Paul for being such a reliable friend, always showing up smiling in spite of his own life problems.
I think one of the keys for my survival with ALS is staying humble by recognizing that every [...]
By Steve, on July 7th, 2010
During my first tour in Germany, my favorite barber on the base had a very distinctive, accented way of answering the phone, located just beside his chair, “Barber shop, Edmund speaking”. Only it was more like “Bobbashop, Edmund speakINK”, with all the aplomb of “Schultz” of the old Hogans Heroes TV show, back when we [...]
By Steve, on June 24th, 2010
SUMMARY: The Department of Veterans Affairs (VA) proposes to amend its Schedule for Rating Disabilities by revising the evaluation criterion for amyotrophic lateral sclerosis (ALS) to provide a 100-percent evaluation for any veteran with service-connected ALS. This change is necessary to adequately compensate veterans who suffer from this progressive, untreatable, and fatal disease. This change [...]
By Steve, on June 18th, 2010
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, [...]
By Steve, on June 1st, 2010
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 [...]
By Steve, on May 28th, 2010
Wrapping up the month of writing on a “day in the life”, I think one thing is pretty obvious: as long as I’m able, and at most every opportunity, I’ll continue to tear myself away from this laptop and enjoy the life I have left. It’s that simple. What was once a “day-trip”, with ALS [...]
By Steve, on May 16th, 2010
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 [...]
By Steve, on May 13th, 2010
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 [...]
By Steve, on May 11th, 2010
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 [...]
By Steve, on May 10th, 2010
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 [...]
 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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