Recent content by ARCG

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    Bulbar ALS - what will death look like?

    In our case, we had hospice palliative care when my husband decided the clinic visits were too exhausting. They really helped make him as comfortable as possible. My husband had the trilogy but didn’t want the feeding tube, as it turned out, he was eating okay unril a few days before he...
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    Thank you for your responses. I continue to see a therapist as well. Many folks have told me the second year can be the worst. I try to remember the good times and even when he was ill we shared good times and laughter. It’s comforting to think it will get better, thank you again.
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    Haven’t been here in a long time. In the second year of our loss and still overcome with grief. Taking it one day at a time but feel like I am just going through the motions most of the time. I have read your threads and they are helpful, thank you. One of you wrote that the person you most...
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    Jdeanda's dad

    I am so sorry for your loss, wishing you comfort in the coming days.
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    My introduction to the group

    Tony, so sorry to hear about your loss. We understand what you are going through, it is a difficult road and a difficult time in so many ways. I will share something my therapist said to me when I told him I no longer looked forward to anything. He said ‘Look forward to the day you will look...
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    What happens to my pALS if something happens to me?

    I also used the nursery monitor. I also put a call bell on the bed and by his chair as he could still move his foot a little.
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    Caregiving tips and mobility questions

    There are two types of shower buddies, one for tubs and one for showers. We chose the one for showers and we had a 2+ inch lip on our shower, It went over it fine, there is a track that fits over it and the shower seat releases to go over the lip on the track. It isnt inexpensive, but we felt...
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    CALS Roll Call Continued

    I don’t even believe they know my husband has passed away, They never contacted us again after he went on hospice or shared results with us about the trials he participated in.
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    CALS Roll Call Continued

    V, my husband decided about two years and a half years before he passed away, that the clinic visits were too exhausting and sapping his strength. He went on hospice and he found that less stressful. We also had folks recommending things without fully understanding the challenges of having...
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    Getting a PEG next week - looking for tips

    Glad it has worked so well.
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    Lenore, I so hear you and what you are feeling. It’s crazy to see people get upset about things with their partners that seem so petty compared to what we have been through. We took pleasure in watching the birds at our bird feeder or our silly dog jumping into my pals lap and resting his...
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    Lost my husband on 5/10/21

    Lindy, my heart goes out to you. Jim said it best.
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    The endless todo list shortens v3.0

    Nuedexta I meant
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    The endless todo list shortens v3.0

    I may be late to this conversation, but have you talked with your doctor about Nuedecat? That helped my husband quite a bit with his swallowing and speech. We started it in 2016 when his speech was affected and he was still understandable 4 years later. I know this is anecdotal. Me was eating...
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    What mods to home to accommodate PALS?

    We used a shower buddy, which was great, as we didn’t have to remodel our bathroom. We also used the special hinges that made the doors open wider to accommodate his wheel chair. He’s spent most of his days in a recliner with memory foam, that was very comfortable, In our case we were able to...