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.

Saturday, January 16, 2016

Who Set These Benchmarks In Stone?


Those dealing with ALS pay the price continuously for the myths that are propagated about the disease.


The ALS neurologist told Mom and our family on every visit that ALS was a pretty linear downhill path.  He was the expert, right?  That was helpful to know.  There wouldn't be ups and the downs would be pretty consistent and constant.  There were no ups for Mom, but the steady, downhill path careened off a cliff very quickly one day.  It certainly wasn't linear.  Mom's case must have been an anomaly, eh?

And as I have known more people with ALS, the downhill path is certainly unpredictable and it can slow (and then pick up again like an out-of-control train).  But docs keep telling families to expect linear.  And in hindsight, everybody feels like a the anomaly.

Now some neurologists are finally admitting that there can by ups and downs and it is hardly linear.  It's difficult enough to deal with ALS and to prepare for what's next, and to assume that the path will have a constant slope doesn't help families meet the demands of the disease that in reality is unpredictable in many ways.

Linear, ha!


Doctors are trained not to look for zebras when most things are horses.  Some are told that they may see at most one case of ALS in a career.  They, therefore, don't look for it.  And we have an unconscionable delay to diagnosis with ALS simply because docs miss it.

Rare, ha!


But wait, there's so much more.  Painless, ha!  $200K per year cost, ha!

Organizations and scientists now speak of the heterogeneity of ALS, yet they still toss out generalizations and averages that distort what families should expect.  Those averages also result in gross misunderstandings of ALS by healthcare professionals.  And those healthcare professionals repeat them from their positions of authority and the myths live on.

The time-honored benchmarks somehow became embedded in stone  It's time to remove those benchmarks and gather the complete and granular data needed to explain ALS correctly.