The neighborhood where I walk in the mornings has very old pin oaks lined up between the sidewalk and the street. Their growth area is about two and half feet across, which leads to an interesting phenomena. The massive trees are all rectangular. It's a good object lesson for young children starting to discover nature and then trying to capture it on paper. They assume trees are round, but, if you show them the trees of Davis street, they will see another sort. You can't quite fit that round tree into that rectangular plot of ground.
Amyotrophic Lateral Sclerosis is like that. It just doesn't quite fit into any clear category. And, like those trees it seems to morph into something else, and unfamiliar. In fact, when our daughter and I attended the ALS conference in Durham last year, the keynote speaker, Dr. Richard Bedlack of the Duke ALS clinic (and Pat's doctor) spoke to that. He said the more they learn about ALS, the less they know. They're not even sure if it is a true motor neuron disease.
No one even knows how many people have ALS. That's why it is so important for those who have managed to be diagnosed with it get on the ALS registry. In numbers, there is power.
http://www.alsa.org/als-care/als-registry/
ALS was first diagnosed by a French Dr. Charcot and until our favorite baseball player told us he was the luckiest man in the world, it was known as "Charcot's Disease."
Here's the link to the Wikipedia page if you're interested.
http://en.wikipedia.org/wiki/Amyotrophic_lateral_sclerosis
My point here now is that AIDS/HIV was unknown until really the 1980s and now it is in many cases considered a chronic disease due to medical advances. That has only been 30 years... The sheer numbers or lack of them often determine whether or not a disease will be tackled by the major pharmaceutical companies. We've known about ALS for over 150 years.
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