ALS

Amyotrophic lateral sclerosis or Lou Gehrig's disease is a progressive, fatal neurodegenerative disease caused by loss of motor neurons. Eventually, motor weakness leads to atrophy, complete paralysis, and respiratory failure. There is little decline in mental function. There are no cures and few effective treatments. Most cases are sporadic.

Last Monday, BMB screened the documentary "So Much So Fast." It follows 5 years in the life of a 29-year-old who discovers he has ALS. It's a particularly poignant movie as you see how this plays into his life goals such as whether to have kids and how to keep building houses (which he loved to do). You can really see the impact of the disease on his life; at the beginning of the movie, he appears to be pretty normal, but within months, he has to use a walker, and then a wheelchair, and finally a computer-aided communication system as even the muscles for his vocal cords have failed. The documentary also describes the difficulty in convincing drug companies to conduct research in ALS because of a perceived lack of market. The brother of the victim in this movie creates a foundation of "renegade scientists" who take an interesting "shotgun screening" approach to find something to help ALS. It's quite a good documentary, educational and moving.

After that, we actually saw someone with ALS. In respect to the patient and his family - even though I'm fairly certain they would not mind - I won't go into much detail about this. However, it really struck me how debilitating and scary this disease is. The person was actually a neurologist who specialized in and did research on ALS. It's a sad irony that he found himself inflicted by the same disease his patients have. It really devastated me to see how terrible ALS is and the profound impact it has on family.