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How to live with fear and panic?

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    #31
    Originally posted by Rosemary6NT View Post

    I use morphine sulphate 2mg/ml 1ml every 4 hours I'm awake now. When extra panicked I use sublingual lorazepam. Unfortunately that's becoming more frequent
    Sorry, I didn't realize you were already taking it.

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      #32
      I did the works yesterday 😭. It started with a small cough after using my inhaler. It kept going, my lungs filling with a bubbly soft foam. No matter how much I used the cough assist, I could not stop or clear or breathe. Had to call in the hospice team who cracked out the just in case meds which thankfully calmed me down and knocked me out. There was a drug to dry lung secretions that worked wonders. Very dry mouth this morning, but that’s ok. Very relieved this morning
      Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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        #33
        Rosemary6NT sorry you are having such a tough time. How are you feeling today? X
        Diagnosed May 2021 bulbar onset als.

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          #34
          Originally posted by shelly21 View Post
          Rosemary6NT sorry you are having such a tough time. How are you feeling today? X
          Relieved that the hospice at home system works so well. Feel much calmer today. Thanks Shelly xx
          Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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            #35
            Then I hope today is a good day for you. These scary days take its toll so hopefully you can rest and recharge x
            Diagnosed May 2021 bulbar onset als.

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              #36
              Rosemary6NT comforting to know such drugs exist. Do people keep these just in time meds at home, or only administered by hospice? X
              Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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                #37
                Rosemary6NT what a terrifying experience....good to know the hospice team are so responsiveπŸ™

                Hope you have a rest day today....😘
                Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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                  #38
                  Rosemary6NT That sounds very scary, traumatic and exhausting Rosemary 😟

                  Gold star (once again) to those worderful palliative care people and their box of tricks - will you take that medication on an ongoing basis or is it more of a reactive med?

                  Be super kind to yourself today πŸ€—πŸ€—πŸ˜˜πŸ˜˜
                  ​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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                    #39
                    Oh Rosemary6NT. How awful for you.

                    Yes its good the team were on hand so quickly but sorry you needed them.

                    Big hugs to you xx😘😁

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                      #40
                      Rosemary6NT I believe 'anticipatory medicines' are often kept in our homes for use by the palliative/hospice team if necessary.
                      Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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                        #41
                        Originally posted by Ellie View Post
                        Rosemary6NT That sounds very scary, traumatic and exhausting Rosemary 😟

                        Gold star (once again) to those worderful palliative care people and their box of tricks - will you take that medication on an ongoing basis or is it more of a reactive med?

                        Be super kind to yourself today πŸ€—πŸ€—πŸ˜˜πŸ˜˜
                        The drugs are kept at home for use as and when required by medics or nurses as they require injection
                        Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                          #42
                          I have decided to ask for a place in the hospice to have my end of life managed, I was so impressed with how they handled my situation. Discussion with my neurologist on Monday about the speed of my deterioration suggest that I may only have a few months to go so decisions have to be taken. πŸ˜•
                          Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                            #43
                            Rosemary6NT I'm sorry your deterioration has been relentless.

                            I have made the same decision and am in awe of how the palliative nurses always speak with such respect, compassion and dignity about end of life care. They have left no question unanswered and I am comfortable with what's going to happen.

                            Sending you love and hugs xx
                            ​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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                              #44
                              Rosemary6NT sorry your at this point but I'm glad you are in control of your choices. I am thinking of you lots x

                              when I was first diagnosed last year I was adamant I wanted to be at home at the end. However I've since changed my views. Thank you for sharing your experience with us and from me it helps in the realistic scenarios that could happen. X
                              Diagnosed May 2021 bulbar onset als.

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                                #45
                                Rosemary6NT it's good to have choices...& these can change to whatever suits you. I've chosen home & possibly hospice...both better than hospital in my opinion.

                                I'm hoping you have better days πŸ™πŸ˜˜
                                Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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