caregivers

  1. A

    my journey winding down

    now that the end approaches thought I'd share a few things,. This group has provided the best support. My five years have been filled with joy I never thought possible. I give credit to my attitude of not letting this beast get hold of my heart and soul. Also for my determination to follow...
  2. C

    Webinar: Dr.Bedlack, Cured by Curcumin?

    If anyone is interested in watching tomorrow at 11am - 12pm PDT “There are 3 validated "ALS reversals" that occurred on curcumin, and there was even a "positive" clinical trial done in Iranian patients with ALS.”...
  3. Nikki J

    Gleason Act

    This passed 3 years ago and stopped medicare from making speech generating devices rentals. At the time this was a new policy ( before as it is currently devices were purchased and yours to keep) Renting meant if you went into hospice or had to be hospitalized the eye gaze or whatever was...
  4. T

    Question about life if a cure is ever found.

    It's been a while since I have checked in. Life for my son and myself, as caregivers, is almost unbearable. My PALS is totally paralyzed from neck down. He has a feeding tube and is on a ventilator. He seems a little more depressed lately. Still doesn't sleep well at night so my son and I...
  5. D

    Trying to cope

    Still not sure how to get around to different forums or see what I posted. Was diagnosed in Feb 2018. Had to quit work in Jan. Not sure what's worse the mental part of this illness or the physical part. I know everyone's timeline and symptoms are different. I have weak left hand, right leg...
  6. T

    My mother's mental state... she is so cruel.

    My mother was diagnosed last year. The majority of her body has succumbed to ALS. She can still speak, move her left arm, and her neck. Over the past few weeks, her mental state has changed. She has always been someone who speaks her mind, and in some cases - should not - but rarely to...
  7. N

    Question for Cals.

    First of all i want to apologise to Nikki i think my questions kinda angered her? At the newly diagnosed thread. I have searched so many sitrs but every site is so general apart from here. I want to ask the caregivers here were you afraid you are going to be sick too? Or you got sick? I have...
  8. tripete

    Dear Past and Current Caregivers

    I want you to write a book. I would like as many of you as want to contribute 5+ pages about what you have learned about, ALS including tips and tricks, what you have learned about life living with a PALS, and life after your PALS has left. I would put all my energy that I have left into...
  9. G

    Survey on Veteran's use of PCs

    This is a survey on computer use (PC, laptop or tablet) by pALS or their full-time caregivers. It’s focus is Microsoft Windows but I need a complete picture, so if you use a different OS, such as iOS or Linux, please select the ‘Other’ Option: Other – No Windows here! The rest of the poll...
  10. W

    Some questions and concerns

    Hi all, First, I want to say that I have the utmost respect for the people here who are battling this awful disease and for their caregivers. I pray for a cure and peace to all of you. I think it is selfless that you give your time to a forum like this. I have been having some concerning...
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