family

Well for starters I found this website in a state of my panic and have read others threads about similar symptoms in a search for reassurance. I have been very apprehensive about posting here because I know a lot of people are probably just overexcited or scared and have convinced themselves...

First off, my heart goes out to all of you. You are so incredibly brave and generous with sharing your time, experience and support. My husband walked into a neurologist's office with symmetrical muscle weakness and walked out with a diagnosis of ALS. Some background - My husband is 51 and...

Good evening, everyone, First off, I have been constantly amazed at the grace and promptness with which questions from anxious people here are answered, and in my time lurking over the last couple months these replies and stickied threads have been a huge resource. So thank you! I'm just...

Hi there, My family has been burdened with C9 - we’ve lost 6 amazing people in 2 generations, so far, including my mom, Godfather, and Gramma. I’ve struggled with anxiety over this disease for over a decade now. The anxiety presents itself in the form of symptoms and I trick myself into...

I’m at my wits end here. PALS has almost no functional movement aside from head/upper torso and a few fingers. He uses his bipap about 20hrs a day. He can be left alone for an hour or so if he’s reading a book on his computer but he can’t move his hands so he’s stuck there if I’m not home...

Hello everyone, my name is Greg. My heart goes out to everyone who has been afflicted with this disease and my thoughts and prayers are with all of you. Also, I want to thank everyone for giving g your time and efforts on posts such as ‘Do I Have Als’ your time and effort is greatly...

Hi everyone, I haven't posted in a while and thought I would come on and give you a life update. Things had been going really well for me and my family. I went back to school for my Masters in Education and in general starting taking care of myself. Well long story short, I went in for my...

I want to preface my first post here to say that my concern has led me to investigate about ALS in a way that makes me feel a deep sympathy for everyone affected by ALS (whether in his/her own flesh, or through a family member.) I also want to help those who make this forum possible. I will...

Hi Everyone, My husband is 35 years old and has lost a cousin, an aunt, 2 uncles, (all to ALS) and currently watches his mom battle the final stages of ALS. His family carries the c9 gene. Upon visiting with his mom over Christmas (they live out of state) and spending a week surrounded by ALS...

Matt has been gone four months, and it feels like a lifetime. On the other hand, I think I'm just now mourning what we went through. All the losses that I was unable to mourn because we were too busy trying to live--I think they are battling their way out of the box I locked them in at the time...