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  1. Tess77

    genetic testing

    I wish that my dad had gotten tested. It would give me better peace of mind. Maybe ask your kids if they’d want to know. I do, but some people might not. I used to be really worried that my grandmother had FTD and my dad has ALS. But I think I just miss-understood what FTD looks like. With...
  2. Tess77

    Advice for the Tracheostomy/Advocating

    Igelb, yes I think he will choose to not get it. He would need to move away from his friends and I think that would be psychologically very hard. He is on some kind of external vent 24-7 He told me it was CPAP but he very well could be mistaken. I tried to figure out last year, but he told me...
  3. Tess77

    Advice for the Tracheostomy/Advocating

    Thank you so much. That is very helpful to know. I didn’t think to reach out to facilities that do the trach care and ask what hospice looks like with the trach! I’m absolutely blown away that you are caring for your wife and your own trach and feeding tube. That is truly amazing.
  4. Tess77

    Advice for the Tracheostomy/Advocating

    Yeah it’s been a while since I last posted. Where he lives has been an ordeal. Short story is the hospital has said they will help place him in one of the nursing homes that can handle the trache. He was in a second story condo and didn’t want to move. My mom (theyre divorced) had a liver...
  5. Tess77

    Advice for the Tracheostomy/Advocating

    My dad was fairly unhappy with his feeding tube procedure; He wanted to be put fully under but they did local anesthesia instead and he said that it was very uncomfortable. They had to do the procedure under emergency conditions; because he wanted to wait as long as possible. He has a very...
  6. Tess77

    Knowing of diagnosis

    Probably different, but in the US I would say try to get long term care insurance. Then live your life and do try to figure out if it’s something else more treatable too.
  7. Tess77

    Don’t know what I’m going to do.

    He is in Houston and I am in Chicago. He’s said he won’t move here because it’s too cold. Based on googling I think he will qualify for Medicaid in TX but I am unsure about Illinois. My mom (his ex) is in the Midwest as well and I think we are his only real support. Nobody in TX has done much...
  8. Tess77

    Don’t know what I’m going to do.

    My Aunt and Uncle confronted my dad. I don’t like the things they said to him and I don’t agree with the way they treat him at all, but I do think he’s in denial and I have no idea what to do. My dad doesn’t want to move here and to keep my family together there is no way for me to move to him...
  9. Tess77

    Dad Diagnosed

    My dad got his second opinion/ confirmation from an ALS clinic in late July. He's had several EMGs all of them "dirty", all of them showing that it's happening all over his body. Right now he's just lost function in one of his hands. Im terrified (obviously everyone here is too), but my dad...