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  1. L

    Massage for PALS and CALS in OC

    Hi everyone, former CAL, Jennifer, here. I’m still living in Orange County, CA and I’ve become a licensed massage therapist in the last two years. I’d like to offer massage to anyone in the area who needs it, PALS or CALS, no charge, of course. I contacted ALS twice, but haven’t had any...
  2. L

    The universe keeps dishing it out.

    We recognized the first anniversary of Kathy's death on December 20. On january 23, the anniversary of her memorial, my father was admitted to the ER with internal bleeding. It was harrowing, as ER admissions can be. He lost half his blood volume. It's possible he had a stroke at that time. My...
  3. L

    My Dad is Still Struggling With Health

    Hello Everyone, I've been thinking of you all, but wrapped up in our latest medical drama. You might recall that my dad was in the hospital for GI bleeding that was incorrectly diagnosed as Prostate Cancer. Thought that the good news was going to be the turning point, but he has been very...
  4. L

    If it weren't for bad karma...

    After a terrifying incident where my Dad woke up in a pool of blood, and proceeded to bleed all over his bathroom and bedroom, Dad was admitted to the hospital. He has been diagnosed with Stage 4 metastatic castration-resistant prostate cancer. He has a tumor growing from the prostate to the...
  5. L

    I'm having disturbing flashbacks

    The cause of Kathy's death was aspirating her own fluid into her lungs, which happened at home. We struggled to try to clear her throat, while her face and hands turned blue. My mother was holding her face and shouting at her to keep trying to breathe. It was harrowing. Now when I am falling...
  6. L

    Free Fibersouce

    I have 12 unopened cases of nestle fiber source formula that I'd like to give away. We got a full prescription order just before Kathy passed. The expiration date is in 2017. If you know anyone in Southern California, who can use it, please contact me. It would be a shame to discard it. Jen.
  7. L

    Our Beautiful Kathy is Gone

    After aspirating into her lungs Friday night, Kathy was admitted to the comfort care department of the hospital, where she received the most loving, tender care by an amazing and professional nursing staff. My sister, mother and niece gathered around her bed and sang Barry Manilow songs at the...
  8. L

    Kathy is leaving us.

    My heart is breaking. Hospice was a disaster. They wanted to take her Trilogy, suction and nuedexta. I couldn't let that happen, as those are comfort items for her, imo, so I sent them away and started to look for another group that would keep the trilogy. She aspirated yesterday while...
  9. L

    People getting GM 604 in Europe.

    This story is compelling. My dad wants to take Kathy. Opinions? Case Reports from International ALS Patients treated by GM604
  10. L

    What do you do when PAL can't get to the dr office?

    K has had two infections on the last two weeks, uti and conjunctivitis. Both times I spoke with the doc on call instead of her regular physician. Both times they wanted her to come into the office for diagnosis, despite my explanation of her physical condition due to ALS. One nurse was...
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