Justin you are not a burden or an inconvenience. No patient with ALS is a burden or inconvenience!! I take care of my girlfriend, who has been diagnosed for almost 3 years! No regrets taking care of her!! If you haven’t already done so, look into a Tobii Dynavox for speech. My sister lives in Anderson Twp.
Just thinking that a treatment is out there, waiting on shelves for years now, and still out of reach while mortally sick patients melt away from this beast of a disease, is just disgusting and a disgrace for the human species.
Actually there are three treatments in the pipeline that have halted, reversed or slowed down the progression with about 70%. The current medications might slow down the illness with 10%. It disgusts me this is allowed to keep happening to innocent people who have done nothing wrong. It disgusts me that people think this is rare when in reality 1 in 400 die from it. It is only rare because people die fast after diagnosis.
