First off, there are no words to describe it. You really have to go there in person to understand Steve's accomplishments and the possibilities for improvements in the quality of life for ALS patients.
The residence is in Chelsea, which for me, conjures up images of oil tanks and industrial warehouses, most a which you drive over in a few seconds on the Tobin bridge. But Chelsea has another side to it. A calm, quiet side and when you pull up to Steve's residence, you see that side. It's a nice, new building, not unlike a Marriott hotel tucked away in some suburban neighborhood.
When you walk inside, however, you realize it's very much not a Marriott hotel. Everything, and I mean everything, is fully-automated or wired up through infrared sensors, wifi, or bluetooth. This is so the residents can control every element in the facility, from the elevators and doors to their rooms' TVs and window shades. It's remarkable to see it all in action.
Here's Chuckie chatting with a few of the residents in the lobby. Honestly, the place feels more like a swanky hotel than a long-term care facility.
The ALS residence is its own separate wing of the facility. Residents have their own rooms, allowing them the independence they've been accustomed to, yet with the support of a medical staff just down the hall.
Steve's room feels a lot like a condo. He's got a fridge, widescreen TV, couch and a ton of photos up on the wall. It's a relaxing place, and Chuck and I quickly felt at home enough to break out the welcoming gifts...
Here's Steve enjoying a Coors Light, as much as a Coors Light can be enjoyed.
Our buddy Jay also stopped by and dropped off our schwag bags for the ride, courtesy of his company, KIND Bars, which sponsored our team. Pretty awesome that they donated as much as they did towards the ride.
At the helm of Captain Steve's ship. He uses a program called Dasher to write emails, talk, etc. Dasher is a free software program designed in the late 1990s to combine predictive text algorithms and motion-tracking software to form sentences based on cursor movement.
Dasher works by streaming a series of letters down the right-hand side of the screen, sort of like a constantly flowing waterfall. As you move the cursor towards the stream of letters, the program begins to guess what letters or words you might want next, just like the predictive text software on your cell phone, and the letters gently drift towards the cursor. If you pass over the letters, the computer takes it as an approval and they fall in line on the left-hand side of the page. Pretty quickly, you can form sentences that you can cut and paste into emails or choose to have the computer read out loud.
Steve has a reflective sticker on his glasses and an infrared tracking camera set up above his computer screen, which constantly monitors his head movements as if it were his computer's mouse. As his head controls the little arrow on the screen, the camera tracks his movements down to the millimeter, and gives him enough control that he can continue working as a landscape architect or, in the case with Team America, an expert bike jersey designer.
Like Steve says, until medicine proves otherwise, technology is the cure.
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