pals

  1. lgelb

    Boston Children’s AAC Program seeks P/CALS input

    An introductory video explains the project’s goals — which include developing AI-enabled AAC to help PALS communicate in real time. The survey consists of 33 questions for PALS; 15 questions for caregivers/family; and 18 questions for clinicians.
  2. KES_SLP

    MGH wants to learn how pALS make decisions about feeding tubes. Survey link included

    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...
  3. KES_SLP

    Seeking People Living with Amyotrophic Lateral Sclerosis (pALS) for Research Study on Preferences for Feeding Tube Placement

    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...
  4. wtlpc22

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

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

    Emotional needs of PALS

    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...
  6. Tomswife

    PALS medical pole going to Ghana

    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...
  7. K

    How long or average length before transition to PALS?

    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...
  8. Nikki J

    Mgh remote phone study for PALS and healthy particpants

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

    PALS passed away

    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...
  10. A

    PALS Having a Harder Time Breathing - Would Love Your Thoughts

    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...
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