WARNING! THIS POST CONTAINS SOME VENTING! AND COULD BE AN EDUCATIONAL READ FOR SOME TOO!


Okay so here I was minding my own business and catching up on Facebook with the latest status updates and I came across one that starts out, "I'm am sick and tired of hearing about ALS patients, I know that they need to find a cure and it is an awful diseases,..."    I think the top of my head almost came off.


Just to catch everyone up:
My father was diagnosed on June 4, 2007 with ALS (Lou Gehrigs Disease), the type os ALS he had was a very fast progressing one. He died on July 14, 2008. He was 62 years young. I had only seen my dad cry a few times before in my life but now he cried when the kids and I came home to help take care of him (which turned out to be his last 3 and 1/2 weeks) and he teared up as I told him about everything going on in my life and the kids' lives, etc. Did he know that his time was drawing near? He will never hear Mary read a book to him by herself and he will never see Michael dance and sing a favortie song. He didn't even get to see Michael graduate Kindergarten. My dad was a compassionate man who would help anyone and he gave the best advice to me and I will cherish having him as a father. David once said that if you looked up the word "grace" in the dictionary - my dad and mom would be pictured there. My only consolation is that he is in Heaven and I will see him again - some days it's just hard to get to that point.

(THIS IS THE INFORMATIONAL PART)

WHAT IS ALS:

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.

As motor neurons degenerate, they can no longer send impulses to the muscle fibers that normally result in muscle movement. Early symptoms of ALS often include increasing muscle weakness, especially involving the arms and legs, speech, swallowing or breathing.

This is a disease that there is no cure for, they are not sure who might get it and there is no real treatment for it. SO basically it is a death sentence but who knows for how long? Most ALS patients live an average of 2-5 years after diagnosis, but there are some who live for many years. This is also a disease that after I heard dad's diagnosis, I began to talk to people about - at least 80% of the people I talked with didn't even know what it was. This amazed me and what was even more amazing that a little over 5,600 people in the U.S. are diagnosed with ALS each year. (That's 15 new cases a day.)

Okay, now that you know a little more about it, I can go on.

I was so upset when I read that post, I was shaking mad. I was hurt. How could someone say that? They haven't loved and lost someone to that disease. They never watched their loved on struggle to breathe their last breath. They never heard the frustration in their voice and they TRIED to talk to you beneath their breathing mask.

I sent a message to one of my best friends in Mississippi, who knows the person who posted that comment because I was about to get in the care and drive there to slap someone silly. It helped to share my frustrations, because she was there with me through it and saw how the disease and his death affected who I was as a wife, mother, daughter and friend. It shook me to my core.

I want to spread the news about ALS to everyone I encounter. Each October, my family, along with my mom, take part in the WALK TO DEFEAT ALS. We ask for donations to help others fight this disease. I pray that during my lifetime, a cure will be found and a better understanding of the disease itself.

There are so many awful diseases out there that affect so many people and their families. All I ask is that if you are frustrated about one disease getting more public attention, then do something about the cause you are passionate about. Don't be a hater or be ugly about it. Being passionate about something is wonderful - so share it with everyone!

Okay, I needed that. Thanks for sticking with me through the not so pretty blogs too!

Michelle