Dad died of ALS, Mom has been diagnosed

[ALSParents]

My previous post explained about my parents. Dad was diagnosed in 2006 and passed away in 2011. Mom was recently diagnosed.

I am having a hard time losing both parents to this horrific disease. The doctor said, this is NOT familial because no other family member had this on either side.

I am selfish. I am losing both mom and dad to this horrific disease. I need help. I need to connect with someone who has experienced this.

Have any of you experienced both parents with ALS? or know someone who has? I am desperate. I need support.

 

[lgelb]

You may not find anyone here who has experienced exactly what is happening in your case, but many here have experienced both ALS in some connection, as well as the loss of a parent. If you need support, we are happy to provide it; more specifics about whatever issues/questions are in front of you right now would help.

On the ground, I know there are in-person and virtual caregiver support groups focusing on sons and daughters and one of those might be helpful for you as well. As you say, it's not that you have a genetic illness issue, but rather losing both parents to a devastating disease. Again, I am sorry.

Best,
Laurie

 

[sohail009]

Sorry to hear about that. I can see my father draining very fast every day and seeing him like this is killing me inside. Everyone has to die, but kind of this death is very horrible and painful.

Could you tell me if their is any exposure to anything for both of your parents which cause ALS? Like any smoking, chemical exposures or chemotherapy etc?

In my father case he has smoked all his life then he went for chemo because of bladder cancer after the chemo his health start declining at very fast rate. And finally diagnosed with ALS.