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...
c9 gene anxiety
Hello I have read all the things I should before posting so please just hear me out as I have done a lot of research. First of all let me just say I am proud of everyone in here who has dealt with this horrible disease, now I know twitching isn’t a sign of als but can come along with it. My main...
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...
Dear forum users,
I've read over several threads and you are so patient and kind to everyone that visits, I take my hat off to you.
I tried my best not to post here, telling myself I am silly for thinking and regret the day I thought it would be a neat idea to Google my symptoms (this should be...
Im 41 female had strange spasm in october in my buttock area , 3 month was limping had ache burning in coccyx area my left side face is weird as well tingling twitching pressing pulling episodes now my fave is slightly thinner than right had weakness right hand now its in left hand , had nights...
I would like to hear from any pALS or cALS who are living with a trach. I understand the medical and technical side of it, but I am interested in hearing the nitty-gritty ramifications of living with all of that at home. The real stuff. How do you staff, are there lay person family members...
Hello to all,
I am concerned about a couple things going on, and hoping you guys would be able to help me, or give me some ideas on my next step.
Everything started about a 1.5-2 years ago. I flew up to Montana for the week to spend time with family. Had a good trip until the end when I got...
Hello everyone, I am sorry to bother you. I am from China and my English is not good. I am 15 years old and no one in my family has a nervous system disease. I learned about amyotrophic lateral sclerosis a month ago. Soon I felt that my right arm was weak and my left arm was weak.
I went to...
Can any PALS explain to me what the sensory overload feels like? My sister only blink yes, no and maybe now. She cannot use her computer any longer as her one hand she had use of is no longer working. The senses she has, she had previously explained are hyper sensitive. So in a room full of...
For the backstory on this thread, please see the original Familial ALS posting. Perhaps a moderator can combine these two?
We have received the gentetic testing results from my husbands brother, who had ALS-like neuromuscular degeneration combined with a family tree with many ALS and...