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  1. CoachMeg

    Shortness of Breath

    hi all. just trying to get a handle on our symptoms as they currently stand. Hospice comes out twice a week now. I have noticed though that my husband is experiencing more episodes of shortness of breath. It used to just be after he ate. Now it is more frequent throughout the day. He does...
  2. CoachMeg

    Is this anxiety or?

    Good morning all! Hubby has a new thing going on and I am trying to figure out if this is generalized anxiety or a physical symptom of ALS. Hoping you can give some advice. In the early evenings, my PALS starts to feel like he needs to get out of his chair and move. He feels like his body is...
  3. CoachMeg

    BiPap/AVAP

    Turns out my husband didn't receive the AVAPS machine he as supposed to. He has a BiPap which seems to be fine, but his neuro really wants him to have the other. So, we are waiting for a call from the sleep clinic. Any of you have experience with an AVAP over a BiPap? Are they pretty much...
  4. CoachMeg

    Eyesight issues

    Did you know that ALS can affect the muscles of the eye? I didn't. Everything I had read said that, for whatever reason, the eye muscles tend to be immune form the disease. Well guess what? It can affect the eye muscles. (sigh) My husband has been experience trouble focusing the last few...
  5. CoachMeg

    Put on my advocate hat last night.

    Last night I had the opportunity to speak at a local high school. They have an annual concert titled Music for Hope that raises money for ALS and the American Cancer Society. It started after one of the band parents was diagnosed with ALS. It felt good to advocate and to thank everyone for...
  6. CoachMeg

    Need to yell a little....

    Good morning. I just need to get this out to those that will understand. I am having such a difficult time lately. And so is my husband. Damnitalltohell! Things are changing and I hate this. I hate the disease. I hate what it has done to my husband. The loss of his dignity and the...
  7. CoachMeg

    Scared.....

    That is it. I am so scared. Not just about losing my husband, but the whole process is starting to scare me. Everyone tells me how strong I am and what a great job I am doing. But, ya know what? I really don't feel like it. I can't do anything to make him better. He fell last night. Hard...
  8. CoachMeg

    Update on Hospice

    First, I want to thank you all for you words of wisdom and support. It really helps being able to ask for support and information from those who know. We met the "regular" hospice nurse on Tuesday and she is wonderful. So far, I think hubby has changed his tune a little. They have promised...
  9. CoachMeg

    Hospice ? from a CALs perspective

    I have put off posting because I don't want to make too big of a deal of this. However, it is weighing heavy on my mind and I could use some perspective. We have been accepted/enrolled/admitted to hospice. Doctor was pretty clear when he gave the referral that he was concerned with my...
  10. CoachMeg

    Getting used to the bipap

    Last night, we tried the bipap for the first time. It was not good. I am hoping that what we need is to use it during the day so he can get used to it. I am hoping our PALS can give me some advice. What does the bipap feel like? I realize the mask must feel suffocating at times, but what...
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