ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Wednesday, January 29, 2014

There Was Life Before ALS

A friend once told me that their family seemed to gauge all time relative to her husband's heart attack.  They moved after the heart attack.  A child graduated from high school before the heart attack.  A significant life event can become a "time fulcrum."  An ALS diagnosis certainly becomes such a fulcrum.  Unfortunately, to doctors and researchers, it is more of a "time chasm."

A person diagnosed with ALS starts seeing new doctors, often in a new clinic setting, with fresh new charts and lots of new tests.  Even old primary care physicians are often left for new ones who are more familiar with ALS or are in the new clinic network.  As those old ties are broken, so are the ties to a rich medical history which could well hold clues about ALS.

Worse yet, if a person with ALS is lucky enough to be accepted into a clinical trial, more chasms appear.  There are clues that already exist on both sides of the big chasm that are ignored.  The clinical trial gathers its own information and doesn't look back.

These time-and-information chasms can and should be bridged.  There was life before ALS.  There was a medical history before ALS.  There is information.  ALS is a mysterious disease. Why ignore the clues?





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