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    COVID Vaccine for caregivers

    I took my PALS down in the rain this afternoon to get his first dose of the vaccine. He has become more and more reluctant to go out in the van, especially today when it's cold (for us anyway) and wet. But I told him it was to protect him and feel so much better that he has received his first...
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    Digestive problems?

    ARRGGHH! My Pals has been suffering with diarrhea for 3 days now. He says he feels fine, but messed the bed Saturday and Sunday mornings, and got me up at 3:45 am this morning. I thought it was the end of it and went for a walk with the caregiver here. Came home to find him back in the...
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    New Assistive Communication Device

    Friday my PALS received his Talk to Me assistive communication device. After a frustrating attempt yesterday (I couldn't get it set up correctly), I was finally able to get him on the device this morning and he sent his first text message. I think it is going to be difficult for him at first...
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    Five years in

    We've been living with ALS for five years. It has been a difficult road for both my PALS and me. He now needs help with just about everything. He has been telling me how hard it is for him; he cannot move his body, and it is hard for me to get him comfortable much of the time. He can't be...
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    More changes

    Yesterday we had an appointment with the speech therapist and rep from Talk to Me Technologies about getting my husband set up with assistive communication. Unfortunately I screwed somehow because I didn't get the speech therapist's email telling me the rep would come to our house, and she...
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    Difficulty eliminating after feeding tube surgery

    Before my PALS had the feeding tube inserted (going on 4 weeks ago) he was eliminating pretty well. We've done this to be proactive, but now he is having difficulty eliminating, and his stools are small and hard. I've been giving him MiraLax and prunes/prune juice but for the past couple of...
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    Feeding Tube

    My PALS has the feeding tube procedure scheduled for tomorrow morning at 1030. He is very apprehensive about it but I have told him that we really need to proceed with it. He can still eat, but lately his eating is much more labored and we have to take breaks during feedings. He has to be fed...
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    Talk to Me Technologies

    We are in the process of looking at assistive communication technology. Our speech pathologist has a contact with Talk to Me Technologies that she wanted us to talk with. Has anyone used them for communication? I haven't heard of them so don't really have an opinion. Thanks V
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    Bipap and feeding tube procedure

    My PALS is scheduled for surgery to insert the feeding tube at the end of the month. He is very dependent on the bipap now and struggles without it, although he can still spend a little time without the support. I am concerned that he won't be able to use the bipap during the procedure, and...
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    Our latest challenges

    We had a video visit with the ALS Clinic 2 weeks ago. There were a number of things that came out of that visit that we are now dealing with. First, and probably most critical, was the doctor's concern about a feeding tube. He told us he wanted to see us go forward with a feeding tube within...