HOPE FOR PALS...

A progressive, fatal neurodegenerative disease that attacks nerve cells and pathways in the brain and spinal cord, ultimately resulting in a loss of voluntary muscle control, paralysis and death. But what makes ALS particularly devastating is that as people progressively lose the ability to walk, move our arms, talk and even breathe, our minds remain sharp; aware of the limits ALS has imposed on our lives.

I'm a person living with ALS, my personal site is Heather's Hope ALS could happen at any age to anyone. I was a full-time employee, paying taxes and paying bills just like you. I didn't ask for ALS nor would I wish it on anyone. It took a year and a half plus a lawyer to get my SS benefits, at that time I got $662.00 a month. During the long wait my husband and I had to file bankrupt, lost our home, 2 new cars and our pride! ALS doesn't change only the patient's life, it changes your whole family, so called "friends" disappear, and overall people are just different.

Before I got sick, I was the typical person trying not to stare. I admit seeing someone in the wheelchairs like mine my 1st thought was pity and oh they're retarded. I deeply regret those thoughts because now I know the truth. People can be in wheelchairs for many reasons, car accident, gun shot victim, freak accident and uncontrollable disease. I feel those stares now, not only by strangers but by people that knew me before ALS, but still act different around me. I guess they don't know what to say or how to act. Let's not forgot those who assume your deaf, talk as if you're not there, or speak as if you were in preschool! Then we have those who pretend to understand what you say or just blow you off and hurry to leave. My innocent 5 year old nephew only knows me this way, if he doesn't understand me he'll say "I don't know what you're talking about" I just laugh!! Hey, at least he's HONEST! I think that's what all PALS want, honesty and treated just like everyone else. Remember people with ALS the mind isn't affected, we can understand, see, and hear everything just fine!

People with ALS (PALS), their families and caregivers continue their fight against the disease, each day they hold onto the hope that our nation will find effective treatments and a cure for ALS.