Monday, September 04, 2006

Living with ALS: Leo's Story

L.C. Greene is a reporter and videographer with the Inland Valley Daily Bulletin in Ontario, California. He has a great job and family and friends that he loves and who love him. He also has ALS or amyotrophic lateral sclerosis, perhaps more commonly known as Lou Gehrig's disease. He was diagnosed on August 16, 2006.

My heart broke when I watched the video of L.C. receiving his diagnosis. Unfortunately, I know far more about ALS than I ever cared to. I lost my aunt to the disease in April 2003. Her father, my maternal grandfather, died from the disease in 1977. My grandfather's sister and his uncle also died from it. During the course of my genealogy research, where I read through many obituaries, I believe I have uncovered another relative whose symptoms mirror ALS at a time when the disease was unknown and had no name assigned to it.

L.C. is chronicling his struggle with ALS in a special online section that features a monthly column, a blog, photo galleries and videos. Most importantly, he is giving a voice to people like my aunt and others currently facing this disease of the desperate need for research money to look at ways of slowing the progression and eventually curing this awful disease.

From the bottom of my heart L.C., thank you.

Thanks as well to Poynter's E-Media Tidbits for featuring L.C.


Anonymous emily said...

Amy, I am so sorry to hear how ALS has plagued your family. It seems to me to be a particularly wretched condition, that no one should have to endure.

A good book from the perspective of an ALS sufferer is I Remember Running by Darcy Wakefield. She read essays from in on NPR which made me cry, so I got the book. She died last December.

3:15 PM  
Blogger Amy said...

Thanks Emily.

I also heard Darcy's story on NPR and it made me cry as well. She developed the disease at 33 and died at 35, which is younger than I am, so it really hit me hard when I learned she had passed away.

My aunt was so brave, much braver than I would have been. She was a very fun person to be around and I loved talking to her. That was the hardest part for me, when her speech was affected so badly that we couldn't have a conversation any more because I could no longer understand what she was saying. It was hard for her too, she got frustrated with me a couple times because she couldn't articulate clearly what she was trying to say. In a way it was a blessing when she passed away.

ALS is an awful disease.

1:56 PM  

Post a Comment

<< Home