I am Debra Henricks
a family member of someone we've lost to ALS,
living with ALS
He was a great man, who did his best to survive this mean disease with grace. And he did just that.
We lost my Dad, to ALS in 2002. He was 81. The picture is of my dad and me in 2001 during a Christmas visit, touring the neighborhood on his scooter. He would take his writing pad and camera with him on these short rides around the block.
He lived with ALS for approx 7 years. At that time we were using modems and primitive programs to stay connected via the internet. As a man who was a former TV repairman, telephone repairman, rock gem enthusiast and eventual electrical engineer, I was not surprised when he taught himself how to write code to build his own website.
He’d upload his pictures and write stories. It filled his day and sometimes sleepless nights. He would have loved Facebook. Twitter, the 24/7 way to stay in touch around the world. Once diagnosed, he refused to get a feeding tube; he just did not want to live his remaining time that way.
I am one of his 5 children. 3 daughters, 2 sons. And my mother (now deceased) took impeccable care of him over those years.
He had 3 brothers and lost his mother when he was only 7. All 4 brothers served in WW2 and came home. My dad served in the Pacific Theater. He did not finish high school yet became a field electrical engineer traveling the US and overseas, to Saudi Arabia and Iran in the 70’s to install or repair control panels for hospitals, dams., etc.
Family time consisted of a few vacation trips, when the kids were all under 10, out west in a 57 chevy station wagon via Route 66. Later, in high school years, we had camping trips in a small 16′ travel trailer. He loved to fish and coached little league for years as my brother was quite good and dad was a great coach. My mother would keep score and we always enjoyed attending the games.
He was diagnosed about 10 years after moving out West to enjoy his retirement years. It was painful to see him lose so many of his golden years to ALS. He was a great man, who did his best to survive this mean disease with grace. And he did just that.
There should be “NO” delays in releasing experimental drugs for current ALS patients who are already out of time. Please open your hearts and minds and act now. God Bless all ALS patients and their families. I will keep spreading the word to get the help you need. My prayers are with you, always.