breathing

My PALS was diagnosed in May with ALS and FTD. Our family I had just been trying to digest the news. We’ve known something was wrong since the beginning of last year. The FTD started first and he didn’t get any physical symptoms until around Christmas when he started choking on liquids every...

Hi Everyone, I lost my beautiful little brother on September 12, 2017. He was 47 years old with 2 young children. i knew I would miss his presence but never imagined this much. I knew what the outcome of ALS was yet still feel so unprepared. My mind keeps going back to those last few...

After quarterly spirography testing, my FVC has been 96% + since diagnosis in June 2016. However, my most recent test (last week) shows I have dropped to 71%. My respirologist is concerned, as that's one big drop, and has booked me for another test in December instead of waiting quarterly. He...

This is my first post in the forum. Although my husband was diagnosed at 38 years old, and 6 years ago already. I never posted before because I just couldn't bare to read what was coming. However, it is now a point in our lives when I think that important decisions will need to be made, and I...

Hi, Just looking for someone to talk to. I feel so depressed the past few days. I mean I've been sad and have my moments but it just feels like it's taken over my body. I keep picturing Jay when his breathing slowed and then his final breath. I go to work every day and then to go to my...

My friend of 30+ years just got diagnosis of ALS. He lives in Russia and his breathing started to be affected. Doctor said he can use bibap S/T at night. Unfortunately waiting line to get this machine in Moscow long and new are too expensive. I was trying to find online used and cheaper and...

My mom has been sleeping most of the day since september 15 after a crisis with secretions and saliva where we used the coughing assist. She was able to stay awake for about the time when my brother came to visit about 10 days ago. :) But every day after that, its harder and harder for her to...

Had clinic day yesterday, first time in 5 months. Hubby has said he feels a little short of breath lying down so he wanted to check that out. Turns out his numbers have to plummeted since our last appt. he was over 100% and now is in the 70s. Very discouraging. RT said he needs to start...

Hi all, I'm a 23 year old male and I started experiencing symptoms about a month ago. It started with abdominal pain which I was then sent for an endoscopy and colonoscopy. During the prep for the colonoscopy I started noticing back pain and other body pain but was told this was normal. After...

Hi , I will work my doctor to get to neuro asap. But until then I want to ask. Can you have a group of sign without having damage. I mean I had hyperreflexia withouth cremasteric and and abdominal reflex. Neuro told me I had upper neurone damage. But they found nothing. With experience can you...