Recent content by Brandi

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    First to go, voice or ability to swallow?

    Thank you so much JLynn, your kindness means so much!❤️��❤️
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    First to go, voice or ability to swallow?

    Hi Laurie, Thank you for reaching out again. I truly do appreciate your support. I have repeatedly asked for a bi-pap, but I continue to get passed around from pulmonologist to sleep doctor to neuro and back again. No one will write one for me. I have two PFT which show very clear decline in...
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    First to go, voice or ability to swallow?

    Re: Dangers of using bi-pap without a prescription? Thank you so much. I was asked to limit my posts to the DIHALS section, which I very respectfully did, so I am not sure what you are referring to. I completely understand the decision of the forum and am grateful for all the work and support...
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    First to go, voice or ability to swallow?

    Dangers of using bi-pap without a prescription? Hi all, What would be the specific caution/ danger of getting a bi-pap and using it without a prescription? Most research says early on bi-pap is ideal, but a few doctors have told me that the respiratory acidosis must be chronic before it is...
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    First to go, voice or ability to swallow?

    Hi Kim, You must be incredibly strong. May I ask how you manage logistically without a caregiver? How do you get to doctor’s appointments, communicate, etc.? I am concerned about who will advocate for me at later stages when/ if I need long-term care. I would love to learn from you. Brandi
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    First to go, voice or ability to swallow?

    Problems getting bi-pap Hi all, I have my first visit to the ASL clinic next week. Will they be able to prescribe a bi-pap? The sleep clinic has been quite useless and slow. What stats specifically do they need to have to prescribe the bi-pap? My oxygen went down to 88 during a home study but...
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    First to go, voice or ability to swallow?

    Thank you so much for this information, Larry, and for the support you give your wife. You are a true gift. I have no family and am completely alone. Wonderful friends but no one who could take on a caregiver role. I wish to die as quickly as possible to prepare for my next birth. Did your...
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    First to go, voice or ability to swallow?

    Hi everyone, I have received an unofficial diagnosis and am losing my speech quickly, along with lots of respiratory weakness and breathing issues. My voice appears to be going first (especially tongue weakness) and I was wondering how long it took those who have lost the ability to swallow to...
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