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.

Sunday, March 3, 2013

Fool Me Once, Shame On You

Fool me twice, shame on me.

There's not much time between an ALS diagnosis and death.  Nobody with ALS has a long memory of things ALS.  They can be fooled.  Yes, they are bright, but they are thrown into a nightmare and are on a search for hope. They and their families are facing mortality in an immediate kind of way, and they want to trust. 

It's easy to stop looking when you hear what you want to hear.  Besides, who can blame a person with ALS for wanting to try things?

For a person with ALS, fool me once, and you won't have a chance to fool me a second time, but there will be somebody new to listen and be trusting and have a chance at being fooled that first time again.  And so it goes, over and over.

There are no good answers with ALS.  From one who has a long memory of things ALS, here are some thoughts for those searching for hope --
  • Google is your friend.  Go through old web pages online along with message boards and read them thoroughly.  It will take time.  It will be painful.  Don't stop reading when you hear what you want to hear.
  • www.waybackmachine.org is your friend.  Look at websites in their past states.  That helps clear the smoke in case you are being told some revisionist histories today.
  • Talk to people who have been around awhile.
  • Use online forums to investigate.  Sure, everybody has an opinion, and you don't have to agree with everyone, but there are people with longer memories than you who can be insightful and helpful as you make decisions.  If anyone belittles ALS message boards, remember that the advice there costs you nothing and there may be someone there who can help you with some point-counterpoint.
  • When you try something, please share your data and experiences in a public place such as the patient profiles at www.patientslikeme.com .  It should raise a big red flag if you are not encouraged to share publicly.
It's often hard to look back through a rear-view mirror, but we all know that things aren't always what they appear to be.






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