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    #46
    Have you radioactivity is a permanent change or temporary like botox

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      #47
      Permanent

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        #48
        There are a few members who have Botox, jd, but I don't know if they log on regularly.

        If you put Botox into the search box, you'll find a few threads on it.
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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          #49
          Just back from hospice taught my wife about patting my back and side rib cage to bring up stuff. She reminded me about stacking and about the wolf who blew down pigs house all very helpful. She is taking my concerns to a medical meeting.

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            #50
            Sounds good, jd.
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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              #51
              I’m learning too for the future. I’m not suffering this yet but like to be prepared. Thanks, Lynne
              ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
              I'm staying positive and taking each day as it comes.

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                #52
                Ellie when do you have your two glyco ned during day?

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                  #53
                  I take it at 10am and 5pm. My last dose lasts until bedtime - once on NIV, I don't have a saliva issue (thankfully!)
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                    #54
                    I take Bromide first thing and lunchtime. I need all the saliva I can get overnight at the moment. 😁x

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                      #55
                      Glyco bromide makes me sneeze or nose run when it kicks in can't breath for a moment until cleared throat then all stuff comes up. Where does it come from? I'm on 2.5ml 3 times a day.
                      Last edited by jd58; 8 January 2021, 12:42.

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                        #56
                        This morning I had to use atropine so I put a few drops into my ensure. Within half an hour my mouth dried up completely. At least I can still choose between drowning or bone dry. 😉😁x

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                          #57
                          Just agreed for radio therapy which I discovered targets two thirds leaving enough saliva. Even if it goes too far they have artificial saliva available. It's a no brainer 😁x

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                            #58
                            Saliva med review with doc tomorrows

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                              #59
                              Matthew, I'll be really interested to know how you get on with the radio therapy, I was offered it but was put off at the time by the fact they told me it was irreversible? and might have similar side affects to what people have when its used for cancer

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                                #60
                                They aim to take two thirds of the saliva gland and it's a procedure used commonly with neck or throat cancer patients. The good news for us MNDers is we only have a few side effects, namely dry mouth, sore mouth, nausea or dizziness (maybe all at once) I can't wait to have it done as I need a bigger bin for all my tissues. 😁x

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