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, June 13, 2012

Some Of Us Need To Put More Fight In The Fight Against ALS

Chapter I


Doctor's Message - Day of Diagnosis

Doctor, you would be amazed at how much your patients and caregivers hear and retain that day.  You set the stage for a complicated trip that they face.  They have some fight in them.  Do you realize that when you tell them about an opponent that they can't beat?

Do you consider the importance of giving them some constructive action items?  They are important. They need to be clear.

Here are two that come to mind --

1. The patient should self-enroll in the National ALS Registry and continue to participate in the risk-factor surveys at www.cdc.gov/als . The patient and family need to know that you doctors do not report ALS cases to any health agencies.  The only way to guarantee patients' data and life factors will be retained is for the patient to take action to self-enroll 
2. The patient should become familiar with clinical trial opportunities immediately.  The window to qualify for a clinical trial is short, and patients need to be informed about the options.  Doctor, if you can't cure the patient, then please give the patient some ways to contribute so that the next person may not face the same unfair fight.
Those are two constructive action items that let the patient fight back a little.  They are important.  If patients and caregivers only get messages and materials that involve acceptance of the ALS beast, then we healthies have taken some of the fight out of the fight.  The action message needs to come from the neurologist. It needs to be clear.  It then needs to be reinforced.

We need to put more fight in the fight.



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