pals

Study Purpose: The purpose of the research is to better understand the beliefs, preferences, goals and concerns surrounding feeding tube placement of people living with ALS. Study Eligibility: You are eligible to participate in this study if you are over the age of 18 and have been diagnosed...

Is there a mouth Suction Machine that can be activated by PALS lost use of arms& hands?

Can anybody give me some advice on how to respond to my brother with ALS? It’s been one year since he was diagnosed. On tube feedings only and uses his ventilator most of the time. Using cough assist and suction frequently. His daily thoughts are what happens when I can’t breathe. He does...

I have donated many of my PALS equipment or returned to DME provider. His shower sliding bench went to a man who paid me, and the donation will go to ALSA. I could not find anyone to take the medical pole and third hand. But a local huge collection of misc items was headed to Ghana. They...

I just had a swallow study that showed atrophy on my right side of my throat. I’m now on a soft mechanical diet and either crush or mix my meds with applesauce. Plus I am to turn slightly to the right when I’m swallowing. A PEG tube was discussed as I am losing weight (finally got that six...

Similar to previous but including controls which I think is new. You need a smartphone you use daily

Hello, I have been too busy to participate in this forum by writing for the most part. I would typically get into bed at the end of the day and just look at new posts when I got an email saying there was a new post. Always too tired to log in and respond. Anyway, my husband passed away in...

Hello Everyone - I posted a few times in the winter soon after my best friend was diagnosed. I’ve been back here to find info many times - which was very helpful! - but haven’t posted in a while. The quick update: P. has lost the use of one arm completely; can still walk, but barely (wheelchair...

https://wustl.az1.qualtrics.com/jfe/form/SV_a9wIWEPPwuzT9Qi

Hello, I haven’t posted in a while but my husband was diagnosed august of 2022 with limb-onset ALS. Even though he was diagnosed as limb-onset, it quickly moved into the bulbar region. His left arm/hand (where we thought it started) is now pretty much paralyzed but the main things that have...