My Dad diagnosed with ALS at 76

[mrorange70]

My dad was recently diagnosed with ALS at 76 years old. I’m heartbroken and still processing it. I’m driving myself crazy if this is hereditary and if I or my sister will get it. I’m 40 years old and there is no family history on my dad’s side that we know of. My paternal grandfather passed away in his 70s of heart disease, my paternal grandmother passed away in her 60s of a heart attack. My aunts and uncles who are not alive passed away in their late 50s and 60s from heart related issues. None of their kids that we know of are symptomatic or were diagnosed and they are at least 40. My dad was a smoker but quit probably 20-25 years before his diagnosis. Any advise would be appreciated.

 

[Nikki J]

I am sorry about your father. It is a hard diagnosis no matter how old.

The chances of a genetic mutation are extremely low in this situation. The risk of sporadic ALS rises with age and 76 is quite old even for SALS FALS skews younger but even young people without any family history are usually gene negative.

Your father can be tested for mutations. Current best practice in the US is to offer it to all PALS and there are programs so it can be free.

Your father will need your love and support. Please be fully present for him.

 

[mrorange70]

Thank you Nikki. I’ve read a bunch of your thoughtful replies to other folks and it is comforting having a moderator like you on here. I’m sure I’ll be back here soon w a billion other questions or cries for help.

 

[Tomswife]

My PALS was tested for hereditary ALS asap after diagnosis. We did it through Columbia Presbyterian ALS CLINIC. It took perhaps one month for results, negative. He had no family history and the test was negative. Therefore it was determined that he had sporadic ALS, he was 69.
The contact we used is
Elizabeth Harrington, MS, CGC
Certified Genetic Counselor
The Eleanor and Lou Gehrig ALS Center
Columbia University Medical Center