kids

Hello everyone, I 'm french, my father died of als in 2015, he had done genetic testing but the results went after his death and then nobody told us anything. We all assume that it was sporadic. Then, in 2016 my sister went under a IVF procedure and needed the results, bingo: c9orf72. At this...

I am in need of honest opinions-and maybe a little tough love. First: I have so much respect for the folks battling this disease while also being willing to support and advise others. My gratitude goes out to you. Second: I read the sticky, and I realize I likely don't belong on this forum...

Those of you who have kids probably remember at some point jokingly saying "I can't remember life before kids." Today, as I was loading my DH in the sling and moving him in the Hoyer to the toilet, it hit me like a load if bricks - "I can't remember life before this wretched disease." And...

Hello to all: I am a newbie and was diagnosed after a year of symptoms in June of 2018 at OHSU here in Portland. (I had previously gone to Mayo in Rochester and was badly misdiagnosed...a story for another time perhaps.) I have been reading through the forums and am truly blown away by the...

I'm sorry if I'm not able to make a new thread, but my other one was closed so I didn't know what else to do. I posted a thread called "Terrified. Please Help." and got some good feedback from it. However, I still have this ALS fear. I was worried about foot atrophy due to one foot being...

Hi all, I am not a Dr. and I don’t play one on TV. I’m just a CALS who pays very close attention to what meds my PALS is on and how they affect him. I want to relate something I’ve learned so that you may be aware of a possible side effect of this medication. Brian has been on Robinul for...

It's been a while since I have checked in. Life for my son and myself, as caregivers, is almost unbearable. My PALS is totally paralyzed from neck down. He has a feeding tube and is on a ventilator. He seems a little more depressed lately. Still doesn't sleep well at night so my son and I...

My brother died last year 10/31/2017, from ALS w/FTD he was 56. His ALS started in 2012 with a small fasciculation in his upper arm. At the time he was a airline pilot, he went to the Dr. and was told it was stress related. The FTD was more of a problem than the ALS and he eventually lost his...

I need support and I dont know who else to turn too. I realize we all have our path we need to walk alone and I know you all have been diagnosed with ALS but I really dont know who else to turn to in this time as no one understands as they only see me as a person who is not dying at the moment...

Good afternoon, I have a specific question which I'm hoping you can help me with. I've read many posts, etc. and sometimes they are "in line" and then sometimes you get a variation from what the mods and senior members post here so hopefully this will help me. First, I do understand that many...