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.

Tuesday, July 22, 2014

This Senator Is Different

Every year hundreds of people interested in advancing the fight against ALS call on U.S. legislators. Some officials are polite and others, not so much.  Most listen.  The message only seems to stick with those who have some past connection with ALS.  Some try to help.  Most file the ALS message in their minds along with dozens of other diseases that need more attention.

But there is one United States Senator who is different.

ALS caregiving changes a person.  "Caregiving" isn't just running errands or delivering an occasional casserole or visiting on a Sunday afternoon.  ALS caregiving involves an intense mix of physical and mental and emotional challenges.  You work a feeding tube and clean the suction machine and invent ways to communicate and deal with body functions and learn how to defy gravity and skip sleep and hold the hand of a dying loved one and watch that loved one slip away regardless of all you try to do.

And people who have been ALS caregivers have an unspoken bond.

There is one member of the Senate who shares that bond.  She is a one of our gang of ALS caregivers.

We are hardly in the league of special interest groups or fancy lobbying organizations.  We simply care and respect one another.  We don't have to talk much.  We know each other well regardless of how our lives differ in other ways. We have lived first-hand the ugly ALS menace.  We have a rage.

We are grateful that she shares the caregiver bond and that she is willing to address the nuts-and-bolts of making a difference for the next person.  Please take a look at this op-ed on the leadership of Senator Lisa Murkowski of Alaska --

http://blogs.seattletimes.com/opinionnw/2014/07/21/alaska-sen-lisa-murkowski-leads-again-on-als/#.U841VTFEMdE.blogger

This Senator is different.  Thank God.

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