Announcement

Collapse
No announcement yet.

Feeding tube

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    #76
    Thanks everyone for your kind messages 🥰
    Foxes Never Quit 💙

    Comment


      #77
      Now you can go into a restaurant and order steak, chips, a blender and a funnel
      Hi, I'm Eddie.
      Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
      Full time powerchair user. Overnight NIV. PEG'ed but still eating. Voice banked but still talking.
      Still wondering what the future will bring.

      Comment


        #78
        Originally posted by WheelsOfSteel View Post
        Now you can go into a restaurant and order steak, chips, a blender and a funnel
        🤣🤣🤣🤣🤣🤣🤣🤣
        Foxes Never Quit 💙

        Comment


          #79
          JamesW All healed nicely and tube behaving? xx
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

          Comment


            #80
            Originally posted by Ellie View Post
            JamesW All healed nicely and tube behaving? xx
            Everything is fine, but I did manage to get a nice little visitor in the wound by the name of staphylococcus. Just halfway through some antibiotics….trying to evict him as we speak 😅😅😅😘😘😘
            Foxes Never Quit 💙

            Comment


              #81
              JamesW 😬 MRSA? 😘
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                #82
                Originally posted by Ellie View Post
                JamesW 😬 MRSA? 😘
                Nothing that serious yet I hope but left untreated it can also cause sepsis 😳😳😳

                Just a common post-op bacteria in exudate (30% occurrence apparently)…… if bits start dropping off me I will go back to the surgery 👍😅 xxx
                Foxes Never Quit 💙

                Comment


                  #83
                  JamesW oh no! Wishing you a speedy recovery and your unwelcome visitor takes a hike😕xx

                  Comment


                    #84
                    Originally posted by Piglet View Post
                    JamesW oh no! Wishing you a speedy recovery and your unwelcome visitor takes a hike😕xx
                    Thanks Piglet 😊😊😊
                    Foxes Never Quit 💙

                    Comment


                      #85
                      JamesW At least you were swabbed and are obvs taking the most appropriate meds.

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

                      Comment


                        #86
                        Hope the antibiotics clear it up soon JamesW

                        Comment


                          #87
                          JamesW I hope your unwanted visitor is soon evicted! Nothing more annoying when everything seems to be healing well x
                          Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

                          Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

                          Comment


                            #88
                            Thanks all, seems to be clearing up well now xx
                            Foxes Never Quit 💙

                            Comment


                              #89
                              Thanks everybody for sharing thoughts and experiences around this.
                              It's an issue I'm struggling with if the time comes where a feeding tube is recommended.

                              I can get my head around accepting a colostomy / stoma for a long-term unrelated illness, because I'm aware of the advantages and potential quality of life advantages.

                              My uncertainties around a feeding tube relate to some pre-MND diagnosis diaphragm and stomach problems (Crohn's and hiatus-hernia), regarding the practicalities around that, together with the psychological impact.

                              I did see this useful decision aid link in Thumbprint Magazine though:-

                              2020: odd symptoms. Nov 2021: Hand atrophy.. Mar 2022: Second arm atrophy - Confirmed Apr 2022: MND.
                              Also Crohn's Disease from 2005ish. (Hi, I'm Dan in Cheshire)...

                              Comment

                              Working...
                              X