THE ALS COMMUNITY

ALS is a RARE disease. Doctors are no even sure what causes it. It's a unknown like many other neuro diseases. There is so much we don't understand about the brain. ALS is like AIDS 40 years ago. They say it's an underfunded disease, not incurable. But what about all of the other neuro diseases out there?? Alzheimer, Huntington's disease, Parkinsons..

The point is not a lot of people are familiar with ALS. Not even a lot of medical professionals or assisted living homes know a lot about it. In fact, many assisted living facilities are not equipped to care for ALS patients because of how extensive their needs are.

I certainly had no idea what the f**k to do at first. In fact, I'm still learning as we go. I've always been pretty independent and resourceful. But even I need help sometimes and I've learn that asking for help is totally necessary with this disease.

I found the ALS forum early on, before my mom had even received a definitive diagnosis. You learn that the ALS community is very involved. Even after their PALS (person with ALS) has passed people remain involved - offering advice to newcomers. And I am SO grateful to have them.

There are no judgements made on the site. Even if you have to rant and be a complete b*itch for 2 minutes, they let you. People respond. Better yet, people understand.