Adam's Case -- Helping ALS Patient
For the first 43 years of his life, Adam took for granted the most basic functions that most of us never even imagine losing the ability to perform. From scratching an itch to communicating via body language as an infant to learning to walk, talk, write and eat. Turning a light on or off, changing the thermostat and operating any item that can be plugged in or wired with a switch -- all once thought to be basic and easy, became life's biggest challenges in June of 2010 when he was diagnosed with ALS.
Progression was fast and by summer of 2011, he was unable to stand, move his arms and his voice was starting to fade. No longer could maintain any independence. He'd ask to have cup with straw held up so he could drink. He'd ask to be fed when hungry. He'd ask to be taken to the restroom and then cleaned up and dressed when done. He'd ask to have an itch scratched. He'd ask to have his limbs moved to help circulation. He would ask for lights to be turned on and off so he could read, he'd ask for TV to be turned on, channels changed, volume adjusted. He'd ask to turn the thermostat up/down if he was hot/cold. When he no longer could swallow and words were not comprehensible.
OpenRemote gave Adam what he thought he'd lost forever, some independence. As he lost ability to move and talk, operating the lights, thermostat and all things that usually require the use of hands or voice to control seemed like luxuries of the past. There is technology in place for people who are paralyzed to communicate with their eyes on computers, however, there are extreme costs not covered by insurance and there are more limitations than possibilities, until now.
OpenRemote gave Adam the ability to turn lights on and off without having to type a sentence with his eyes to let somebody know what he wanted. The sense of independence gave him joy beyond words. He regained control over something. He showed off how he could turn lights on and off to every person that visited him. The pride this brought him was incredible. He knew all the possibilities of this new found freedom. Thermostat, TV, doors and his bidet. He was thrilled to know that once in the restroom, he would be able to do some personal hygiene on his own to maintain a bit more dignity than before. Sadly, Adam passed before the project was completed, but he died knowing what was to come.
#als #assistedliving #lougehrigsdisease #domotics #opensource #openremote
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- Working to help Adam was a joy. He was an engineer himself (a real engineer, not a computer scientist type like me), having engineered one of the most critical parts of some of the Scientific Atlanta set top boxes. His wife Steph was helpful in all manner of ways and had no shortage of technical abilities of her own, having served as a code librarian.
Rest in peace, Adam, and thank you for the opportunity! May you be for a blessing.Nov 23, 2012