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  • Users: Maryl08
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  1. M

    Grieving process

    Hi everyone, it's been a while since I've been on here. I stopped coming because it would make so sad every time. It's been about 6 months since my mom passed and I feel like all of a sudden the sadness is hitting me hard now. I feel irritable and a general sense of unhappiness some days. I lash...
  2. M

    Old equipment?

    Hi everyone! Do you have recommendations on best places to donate old equipment? We have lots including a bipap and tobi speech device. I was going to donate everything to ALSA but wanted to come here and see if you have suggestions. Just want to make sure they will get to a family who needs it...
  3. M

    Mom is free now

    My mom passed away today after being diagnosed with ALS last December. 26 years will never be enough time for us to have together but I am happy she is free now. After she lost her ability to walk she was so miserable. I believe that is when she decided it was time to go. She passed away 1...
  4. M

    Close to the end..

    Mom is now on morphine every 2 hours and oxygen 24/7 as prescribed by our hospice nurse. They think she has less than a week now - more like a few days.. but her body is young (she's 56) and her will to live is strong. She's trying to fight it. She is sleeping most of the day now and opens her...
  5. M

    Power wheelchair gone wild!

    We just got my mom a power wheelchair from the ALS loaner closet today and it takes some adjusting to! She doesn't steer herself so my sister and I do it for her. The steering reminds me of those car racing video games on the xbox (which I suck at hah!). Anyway tonight when we were putting her...
  6. M

    Missing my mom

    I just need to rant here tonight because it has been a crazy tough week at our house. Along with physical changes my mom's personality seems to have taken a drastic change. I know anger is a part of dealing with this disease and potential FTD. She seems unrecognizable to us now and has been...
  7. M

    Neurogenic bladder and issues pooping

    Everything seems to going wrong all at once in the past couple weeks. My mom lost use of both her legs (we are getting a hoyer lift) and we were just starting to nail down a new routine for that. However yesterday I notice she was unable to pee all day. We took her to the bathroom 3 times per...
  8. M

    Trouble with transferring

    My mom has progressed a lot within the past couple of weeks. She went from being able to get to the bathroom on her own with a walker to being able to only stand and we would push her in her wheelchair and help transfer her onto the toilet. Now she is not able to stand anymore and my sister...
  9. M

    How do you know when the end is near?

    My mom has been declining quickly in the last few months. Recently she's been unable to walk from her bedroom to the bathroom across the hall so we transport her in a chair. She's already started hospice which has been a great help. I have an awful feeling that the end is near. She's been...
  10. M

    Ranting

    I am feeling so burnt out and over ALS. I am so over it. I feel like I have ZERO guidance. None. The nurses cannot tell me anything helpful about my mom's care. The ALSA association does not respond. All I want to figure out is WTF I'm suppose to do about hospice and ordering equipment for my...
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