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, August 19, 2008

Doing Advocacy 24x7

The following post was on the patientslikeme.com forum last week. It speaks volumes about the power of simply explaining ALS and getting the word out at every opportunity. If each of us (especially the healthy ones) would make the effort to start conversations and inform others, we would make an impact.

Thank you all for your thoughts and prayers. Ken is enjoying reading every one of them...Ed - Ken made that picture his wallpaper. By the time we left the hospital EVERYONE knew who Ken was and were educated on ALS (ESPECIALLY that idiot doctor who asked him if his ALS was getting better). The nurses only had to send out an "all points bulletin" once to find Ken who was out cruising the halls when the doctor came looking for him. One of our CNA's remembered us from our visit to her high school where we went to talk to the Health Education classes about ALS. Another one asked if we were at the Manatee's ball game on July 4th because she thought that was Ken who threw out the first pitch. Although it was not good for him to have to be in the hospital, it was encouraging to know that we have made an impact in raising awareness.Even when he is sick, his ideas never stop. He is coming up with several ideas for awareness...and I am sticking to my guns about the long wheelchair trips! I am certain once he has all the fine details worked out he will unveil them to you.Thanks again,Glenda

No comments:

Post a Comment