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  1. D

    trach questions

    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...
  2. Nikki J

    Webinar on trach decision

    This is now archived on the NEALS website as are all the NEALS webinars. Worth browsing if you have not yet done so. Search NEALS ALS Consortium
  3. H

    after trach surgery...

    my mom did the trach on last Friday. she was in ICU for 1.5days and transferred to PCU(progressive care unit). after few hours of her surgery, she started to bleed a lot so had to go back to surgery room to control the bleeding and to chech if everything is okay. next day of surgery, she was...
  4. P

    humidifier for Trilogy

    My husband, Frank, has a trach and uses the Trilogy with attached humidifier only at night. Saturday we lost power for 5 hours during the night. The Trilogy switched to battery but the humidifier was off due to loss of power. He claimed that he felt like his trachea felt like it was burning...
  5. Kristina1

    disagreement with my husband/cals about end of life decisions

    This is mainly a vent.. We are still working on discussions for writing up an advanced directive. My doctor is referring us to a palliative care doctor to help facilitate those discussions and make final decisions. While talking about this I told my husband when the time comes I DO want a...
  6. E

    Experiences with mullein leaf tincture for lung health?

    Hi all, I'm wondering if anyone here has used mullein leaf tincture (or any other variants of mullein) to manage secretions and general lung health. If you have, what effects did it have for you? My partner Jen is a PALS with a trach and has thick secretions (even when she's sufficiently...
  7. H

    Help on Trach

    Hi , my name is Jennifer and my mom is diagnosed as ALS last year(8/2017). Recently, her pulmonary doctor recommended my mom for the trach due to using 24 hours of trilogy. i am also researching about it but couldnt find the answer or opinion that that my mom has after she gets trach (Note: She...
  8. N

    Trach - What is it like?

    Hello I'm trying to get a general idea from those who have gone through the tracheostomy process. What was your recovery time like and pain? How does it feel when breathing afterwards? Is it something you have to get used to? Is it better than what you were experiencing as far as breathing on...
  9. M

    Mom recently diagnosed

    Hello All, My name is Meaghan, and my mom Nancy was officially diagnosed with ALS in December by the Cleveland Clinic. We've had a scary few weeks, with her going into the hospital May 1 (trouble breathing), and coming out with a trach, Trilogy, and PEG tube (and all that comes with that-...
  10. T

    Familial ALS

    Thank you for adding me/us to the forum. In brief, here is our story: My husband lost his mother to ALS when she was 59 years old. She had one aunt, one uncle, and two first cousins who also passed from ALS. There were a couple other family members who may or may not have had early signs, but...

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