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    Update about doc and feet

    I’ve got a new prescription on order (phone call just now between Steve and doc) for liquid morphine for severe hip pain that codeine doesn’t touch, and catheter being done Monday morning.

    I went to Orthotics at Fairfield this afternoon. Not happy with the shoes she can get me. Not like Ellie’s which were nice but old fashioned type of disability shoes and look horrible. I accepted her offer but doubt that I’ll wear them. I’d prefer just socks than to look like a dork. I’ve been still standing up but it is very soon wheelchair and help getting in and out it, my RR chair and my bed. Lynne x
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

    I'm staying positive and taking each day as it comes.

    #2
    Stick to your guns girl!! 💪👍✌️😘xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

    Comment


      #3
      matthew55 😉 xx
      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

      I'm staying positive and taking each day as it comes.

      Comment


        #4
        Originally posted by Lynne K View Post
        I’ve got a new prescription on order (phone call just now between Steve and doc) for liquid morphine for severe hip pain that codeine doesn’t touch, and catheter being done Monday morning.
        Lynne, I wonder if you'd be better off using a BuTrans patch, which delivers a constant amount of pain relief, or is the liquid morphine only for nights?

        Originally posted by Lynne K View Post
        I accepted her offer but doubt that I’ll wear them. I’d prefer just socks than to look like a dork.
        You're hilarious 🤣🤣 I think you're right to take them Lynne, even if you were only to were them to transfer a few times per day. xx

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

        Comment


          #5
          Ellie it’s only for before bed and if necessary during the night because my hip had the Labrum scraped out a few years ago as it was torn (I did it in the gym). The op caused severe inflammation as nothing between the bones. My back is bad too but codeine helped that xx
          Last edited by Lynne K; 6 January 2022, 19:03.
          ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

          I'm staying positive and taking each day as it comes.

          Comment


            #6
            Ellie the podiatrist said the shoes will take weeks to come. I definitely won’t be using my walker by then xx
            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

            I'm staying positive and taking each day as it comes.

            Comment


              #7
              Hi lynne. I hope you get on better than me with oramorph. Its wears off after 3hrs with me. So basically still wake up painful hips etc. I am using butrans 15mg plus morphine and not really helping. I've given it 3 months and the hospice doctor saw me yday and said morphine not great for nerve pain but suggested I try gabapentin much like Ellie recommended. So maybe keep in mind. I'm going ask g.p for gabapentin this week.
              Diagnosed May 2021 bulbar onset als.

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                #8
                Gaberpentine made me ever so sleepy during the day, so I only had it for a few days. Steve will come to me after a few hours in bed and give me more Oramorph and I try to swallow 2 paracetamol capsules. They’re big so it’s hard. But twice yesterday I managed them with a bit of effort xx
                ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                I'm staying positive and taking each day as it comes.

                Comment


                  #9
                  I use effervescent paracetamol if you don’t like the taste I put it in my vimto xx
                  Janette x

                  Comment


                    #10
                    Nettie as soon as I have the catheter I will be able to drink more as at the moment I’m restricting what I drink as I’m worried about getting to the loo or pulling down my nickers in time so I go quite often but still do all of it myself. I don’t really want effervescent paracetamol but it might work for me. Thanks for the suggestion xx
                    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                    I'm staying positive and taking each day as it comes.

                    Comment


                      #11
                      Lynne K I get my paracetamol in a liquid suspension form. xx
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      Comment


                        #12
                        Ellie I probably will have liquid paracetamol too after my catheter is put in on Monday xx
                        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                        I'm staying positive and taking each day as it comes.

                        Comment


                          #13
                          I use effervescent paracetamol through my PEG
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                          Comment


                            #14
                            matthew55 when I’ve got a PEG, hopefully soon after my appointment with Wythenshaw next Wednesday I’ll get Steve to do the same for me, putting all of my medications through my PEG xx
                            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                            I'm staying positive and taking each day as it comes.

                            Comment

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