My mom (72) was diagnosed with Bulbar Onset ALS last June after three trips to the Cleveland Clinic. My mom meant the world to me and life will not be the same without her. She started calling me her hero, then I started calling her my hero. I have no siblings and my parents are divorced. My mom’s two sisters were godsends, right up until the end. I didn’t know how I was going to make it. When I first joined this group, I couldn’t finish reading many posts. It was just too hard. It’s still hard, but she’s no longer suffering. Peace to all those going through this incredibly difficult journey ..read more

Hi Everyone. My friend’s friend, who has been diagnosed with ALS is looking for a 24-hour care facility in Ontario. He’s on BIPAP for over 15 hours a day, talking about G-tube feeding and the future need for mechanical ventilation. Home care and other organizations won't be able to support him for 24 hours, was declined for a Nursing home application because future mechanical ventilation would be too much for the Nursing home. He would not want to go hospital… ODSP is the only income and no family. Does anyone know any facility that can look after him permanently in Ontario?? submitted by /u ..read more

My dad is my mom’s caretaker and has to transfer her from the wheel chair to the toilet. She’s extremely anxious with all transfers so sometimes she doesn’t make it in time. They tried depends which help get her through the night but every time he tries to get a pair back up they rip (because she’s sitting on the toilet). Does anyone know if there are any adult diaper brands that are less prone to ripping - geared for caretakers pulling them up? submitted by /u/vintagemugbetty [visit reddit] [comments ..read more

I am the caregiver to my 32 year old husband who has als. I know I have read that behavior and thinking can be affected because of ALS. Well my husband cries and screams and when I say screams I mean wails like he is in severe pain or distress over such little things that could be easily resolved fast and simple. I know I will never fully understand what he goes through but I get so overwhelmed when he does this and I don't know what to do I have to sit there while he screams in my face trying to figure out what happened and why he is screaming because he gets so worked up he can't even commu ..read more

Hi everyone. I'm really sorry if my status seems insensitive. Recently I have seen a research (actually researches) which show somehow nearly all ALS patients (of course whom included to research) have either one or two types of mycoplasma infections. Mycoplasma have different types and if I'm not mistaken only 4-5 types cause diseases in people. One causes pneumonia and others cause genital infections. And unfortunately most of the times these infections (genital types) don't cause a lot of symptoms and people can go on asymptomatic for years. All the researches I saw suggest a strong connec ..read more

A new direction is ALS research. With all these researchers chasing the rabbit instead of unifying and working together, how many different directions have they gone in the last 100 years? Is there even a listing cataloging all of their efforts to register what all of the research has been so everyone can learn from that knowledge? How many years have been wasted repeating the same thing over and over? "I spent 10 years trying to repurpose IGF-1 as an ALS therapy. We took it from preclinical work all the way to a phase 3 multicenter trial, but in the end no effect was seen," Dr. Feldman said ..read more

Mid 30s, diagnosed about two years ago with symptoms probably in my late 20s. I’m thankful for how well I’m doing, outwardly I probably don’t have noticeable symptoms (mild dropfoot) to anyone who isn’t a dr. But… I feel like I’ve been hit by a truck, every day. It’s that moment when you open your eyes wishing for just 10 more minutes of sleep. I take enough adderall and caffeine to kill most people but to no avail. Anyone else with a similar experience or anything that worked? submitted by /u/Unlikely_Front7381 [visit reddit] [comments ..read more

My Mom has bulbar ALS and it’s almost like she has an intellectual disability. She isn’t the same mentally. Is this normal? I thought people with ALS were essentially unaffected in that sense. It makes things so much harder and more frustrating because she is incapacitated physically and now mentally. submitted by /u/Trick_Airline1138 [visit reddit] [comments ..read more

Hi, I just joined this community, I feel like I was not finding the information I was looking for online anymore. My father was diagnosed with ALS 2 years ago, and after gene testing it was determined to be genetic. He has been the only one in his family for it to present as ALS, but others in his family had Alzheimer’s (caused by the same gene). I am now facing the reality that I may carry this gene. I am a 29f and I have always wanted to be a mother, but now I am questioning if that is something I would risk if I carry this gene. So I would like to know, has anyone had gene testing done tha ..read more

An immediate family member was diagnosed with respiratory onset ALS a month ago. We went to a big ALS center last week, and the doctors stated my father may only have a few months left. The doctors also won’t prescribe him riluzole or edavarone (Radicava). Are you all aware of any natural peptides and supplements my dad can take? It’s frustrating that they would not put him on any medication or treatment. Also are there any other online groups that may have more information submitted by /u/DontWorryAboutttt [visit reddit] [comments ..read more