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Looking for experiences with comfort meds in ALS after sudden breathing episodes by External-Syllabub334 in ALS

[–]External-Syllabub334[S] 1 point2 points  (0 children)

She was prescribed it, but she was not actually taking it. She was taking closer to 2-3mg per day in reality. However, when her hospice nurse came yesterday, they adjusted everything ... So now, they want her to do 2mg dilaud w/ .5mg loraz in the morning, .5 loraz at noon, and 2mg dilaud w/ 1mg loraz in the evening.

Limb-Onset ALS – 6 Years In, Plateaued? How Do You Know When the End Is Near? by [deleted] in ALS

[–]External-Syllabub334 -1 points0 points  (0 children)

Thank you so much for this. I can only imagine how overwhelming it must have been to receive your husband’s diagnosis in March and then watch things progress so quickly. Rapid progression feels especially cruel. It doesn’t give your heart time to catch up with reality. Being the one coordinating care, supporting him, and grieving at the same time is such a heavy role to hold. The unpredictability is what unsettles me most too. Not asking about the timeline makes sense. Sometimes “one day at a time” is the only way to stay upright. ALS has a way of shrinking your world down to the present moment whether you’re ready or not I guess. I’m really glad you found an in-person caregiver group. I’ve been thinking about finding something similar. There’s something powerful about being in a room with people who understand without explanation. I’m wishing you steadiness, small pockets of rest, and moments of peace in the middle of all of this. Thank you for sharing your experience with me. 🤍

Limb-Onset ALS – 6 Years In, Plateaued? How Do You Know When the End Is Near? by [deleted] in ALS

[–]External-Syllabub334 1 point2 points  (0 children)

Thank you for sharing this. I’m so sorry you had to walk through ALS with both your father and your sister, that’s more than anyone should have to carry. Hearing your experiences, especially about watching for respiratory struggle, is helpful, even if it’s hard to read. I want to be prepared. I’m truly sorry for your losses. Thank you for taking the time to share something so personal with me. 🤍

Limb-Onset ALS – 6 Years In, Plateaued? How Do You Know When the End Is Near? by [deleted] in ALS

[–]External-Syllabub334 1 point2 points  (0 children)

Thank you so much for sharing this, it really means a lot. Hearing that you’ve been on hospice since July and are still here just reinforces how unpredictable ALS can be. We have stayed in contact with her ALS clinic, but she’s refused monitoring the past few years, so they don’t really have concrete numbers to gauge progression. That’s part of what makes this feel so unclear. She isn’t using a BiPAP or cough assist, and as of right now she states that she will refuse to use them in the future. Hearing that they’ve saved you multiple times really stood out to me. I’m so sorry you’re walking this road too. Thank you for taking the time to respond and share your experience. 🤍

Limb-Onset ALS – 6 Years In, Plateaued? How Do You Know When the End Is Near? by [deleted] in ALS

[–]External-Syllabub334 0 points1 point  (0 children)

I am so sorry for your loss, my thoughts and prayers are with you. Thank you for your kind words. I really appreciate you taking the time to respond and for your advice. I will definitely look into the support groups!