Living with ALS

I was born in Dec ‘72, my mother was diagnosed with Lou Gehrig’s disease in Mar ‘73. She passed away in Nov of 2000. She lived 27 years with this disease. And she always had a very postive attitude toward her family and life. She fought not to die from this disease and she won. She died from toxic shock. I never remembered my mother being able to walk but I have fond memories of my mother. And through it all my father was always there.

My father did not hire care givers for my mother. He took his vows to heart. When he said ” in sickness and health” he meant them. He was not only full time care giver for 3 kids, his wife, but also my great-grandmother. No one could have asked for a better husband or father. Sure there were plenty of hard times but, my mother was always there to give my father moral support, no matter what life through their way. My father often stated the my mother was “His Rock”. My mother was given 7 years to live by the doctors in Mar ‘73. And in the 27 years that she lived she not only fought this disease, but in the mid 80’s she found herself fighting pneumonia. The doctors said she would not live through the night and my father would not listen to them and together they beat that. When she had pneumonia she had to have a tract and stay on a ventilator. But, with her strong mind and my fathers support she continued with her fighting the doctors and was determined to live. Before my mother was dignoised she was a school teacher.

And even when she could not talk, walk, feed herself or care for herself. She thought of everyone else before she thought of herself. One memory I have is that there was one teenage boy that went to church with us, and he was 18 years old but, was on a grade school level in all subjects. He had dropped out of school because he was so far behind the other kids. He wanted to get a GED to get a better job. So, my mother told him if he would stay with her during the day, so my father to work, she would teach him and get him ready for the GED. For about 4 years, my father would go to the school, and get the current school books and she gave him lessons. He had to work harder than if he was in regular school because my mother could not speak, he not only to learn his lessons but he had to learn how to read lips. I really could go on and on about my mother and her strenght. But, I really wanted to write this to let anyone that is battling this disease.

Don’t just give up and accept what the doctors tell you. You have to fight. Just because you are unable to have movement in your limbs you could still move someone heart. To the families that have someone with this disease, just remember that no matter what, that person would do anything to help you if the shoe was on the other foot. Always, stay positive and fight as a family. There is always hope.