I am a healthy 48 year old married with 3 beautiful children. My father was diagnosed with ALS in February 2012. He recently elected to have a tracheotomy and is recovering from that surgery and is on a respirator for 12-16 hours/day. he is 81 years old and has lived a full and happy life. While his disease is brutally sad, he and his family feel blessed that he has had such a full and loving life.
As I learn and witness more about the disease I am humbled by its progression and reckless power. I have read at lengths on the testing and determination of the familial strain of ALS but have found little substantive information.
I am very interested to hear if there are other children of ALS patients who have gone thru the testing to determine if they carry the FALS genome and if they have, would they recommend it or regret pursuing its diagnosis? I am quite certain that the the knowledge of having the genome opens up a Pandora’s box of fear and confusion, but I am curious to hear someone’s insight.