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  1. B

    My PALS died today

    Sorry you are on this journey. My PALS passed away on May 29. Give yourself permission to grieve however you need to. As mentioned, there are no rights and wrongs and every hour can be different. I am trying to focus on all the good memories but sometimes I have to get past the memories of...
  2. B

    Bulbar ALS - Some Questions

    My PALS began with a little bit of raspiness in his voice in January, 2021. Slowly his speech was affected. By July our daughter's could only understand about half of the words he spoke. He got a speech device through a grant with the State of Texas but it was too late to pre-record his voice...
  3. B

    Looks like my only option for this saliva problem is Botox. Pros/cons from someone who knows?

    My PALS got botox injections. He thought they would work immediately but it was probably over a month before he realized how much difference they had made.
  4. B

    Bulbar ALS - what will death look like?

    Hi B I'm so glad you asked the question. I wonder the same thing. My PALS has the PEG and Bipap. We also live in Texas with a DNR. I didn't know that I might have problems with it. We also deal with a lot of phlegm. He is afraid he will die choking on the phlegm.
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    Wish it was light but...

    Al, downers are acceptable because saying it can relieve stress. It also helps to know other people care. My PALS just came home from the hospital last night with a PEG. Within a matter of days he went from coughing at each meal to choking on clear liquids. He was dehydrated and spent 5 days...
  6. B

    His Nutrition and My Mental State

    Thank you for the words of encouragement. I wouldn't say my husband resisted a feeding tube, I think the need just came so quickly. I will try some of your suggestions for shakes. The scheduler is suppose to call on Monday to schedule the surgery. We have already had the televisit with the...
  7. B

    His Nutrition and My Mental State

    My husband was diagnosed with bulbar onset ALS in September. On Sunday we had to go to pureed food because of a bad choking spell. We are in the process of getting a feeding tube. In the meantime, he has lost 4 lbs this week. He had already lost over 20 lbs since June. Milk products make...