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Hello, I come from an ALS family. My mother passed away due to ALS, so did my Aunt, and my Uncle passed away from frontotemporal dementia. I have never been tested but I would wager we are a C9ORF72 family. I have had a fasciculation in my right foot since about age 14. I am 22 now. It...

I hope this post is appropriate for this section, but I wanted to briefly share a personal reflection of my experience during my father's battle with ALS and what I hold dearest to my heart after losing him. The topic of ALS can be a sad discussion, it is sad. But, as odd as it sounds, after I...

Keep moving, don’t stop!! https://youtu.be/bs-ROwZ2r3U Hope y’all find the humor in this! Love y’all, Chally

I wanted to check this out, as my husband uses the Trilogy 24/7 and experiences many discomforts due to the pressurized air being forced into his nose or mouth. Makes him congested and sneezy, which is an issue because he can't clear secretions easily. It's way worse when the humidifier is not...

Hello, I'm a 25 year old girl. I have been having some really weird things going on with my body for three months or so, and now I'm beginning to worry that I might have Als. First, I've been having what I would characterize as weakness, mostly on the left side of my body (left arm, hand...

Moderators, I'm posting a link to Karen's You Tube video. It's wonderful! https://www.youtube.com/watch?v=Ucx3FuLh1OA

Extreme dysphagia, diagnosed with "unspecified autoimmune", would like some input I have done the math, and I'm a statistician - getting diagnosed with ALS is extremely rare. For someone like me, younger than 30 (I am 29), it's even more rare. On top of that, "bulbar onset ALS" is an additional...

I'm going to try CBD oil. I've looked online and there is no way to know which is best. I watched a video on Hempworks which claims theirs is gown in Kentucky, is the most pure, is 3rd party tested, and uses the entire plant minus the THC. Any thoughts or suggestions? Thank you, CarolSue

I know this issue has been done to death, but it also appears like there is contradictory information. I've been suffering fasciculations in my left calf for some weeks. Lately, they have spread to my right leg and occasionally to both arms. By suffering fasciculations, I do not mean "once...

Hi everyone, I'm working on a short film about people with ALS recording legacy videos with messages for friends and family. I was wondering if anyone would be interested in collaborating. Ideally I would like to feature some clips to show the range of video types people have made. Alternatively...