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    Introduction

    Hi my name is John aged 62. I have had dreaded MND since last OCT when i noticed by voice changed and starting getting a lot of leg cramps. I can still walk slowly but eating soft foods and going for a feeding tube in July 13th as a precaution. Nice to meet you all on this site. I am retired but my wife and grown up daughters are helping out at home.
    Last edited by jd58; 22 June 2020, 16:56.

    #2
    Hello John and welcome to the place no one wants to be.

    I guess by now you have been through all the emotions when it is confirmed and the changes in your functions thereafter. Now that you have joined our family club you will find friendship, advice and support.

    Keep in touch and best wishes.

    Barry
    I’m going to do this even if it kills me!

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      #3
      Nice to meet you John, though sorry about your diagnosis.

      Best wishes for the feeding tube procedure.

      Take care.

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

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        #4
        Welcome! Andy

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          #5
          Hallo, John, I'm a newbie here too!

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            #6
            Hi John, welcome to our forums. It is hard in the beginning to accept this horrid disease but going for the feeding tube early shows that you are a courageous rational man. Mathew on here is getting a feeding tube soon too so you’ll have things to chat about. Others are very well versed in it. It’s good that you have a wife and two daughters there for you. Sounds like you are surrounded in love and laughter. My husband is here with me and my youngest daughter lives a 15 minute drive away. She always brings joy with her. We often have a laugh.

            Nice to hear from you. Take care, 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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              #7
              Welcome John. I’ve had a PEG for several years but still manage a soft food diet and only use the tube for meds and extra water. Hope it all goes well.

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                #8
                Thanks for all the good wishes. I picked up a resmed ventilator yesterday to use at night. I wore it throughout the night and got a good nights sleep and made a difference to my breathing today. I went fishing with a friend for 3 hours to a local pond and I caught 3 perch - takes me back to when i was a lad. Had my preop yesterday too. The say i have isolate for 14 days before and take a covid test the week before, I will spend a night on the respiratory ward with maybe some covid patents at the other end because of my ventilator.

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                  #9
                  Great that your first night using BiPAP / NIV / ventilator went so well for you John and that you got good benefit from it.

                  If there are any Covid-19 patients on your ward, I hope they're well away from you with dedicated staff!!!

                  Stay safe.

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

                  Comment


                    #10
                    Hi John,

                    Well done for catching those perch. When I was a boy my dad took me perch fishing in the Lake District and we used live minnows for bait. I believe this is now banned. Sign of the times we live in.

                    Best wishes,

                    Barry
                    I’m going to do this even if it kills me!

                    Comment


                      #11
                      Hi John,

                      I just wanted to say a warm welcome to the forum from me. It's a great place for friendship and support from people who really understand. It sounds like you're really proactive in getting a feeding tube and it's good you managed a good sleep with your NIV.

                      Enjoy your fishing and take care,
                      Love Debbie x

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                        #12
                        added a humidifier to the ventilator did not notice much difference still awoke at 5am with a very dry throat? setting I put at setting 5 and after 6 hours solid sleep.

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                          #13
                          That's disappointing John, I wouldn't last 2hrs without a humidifier!! It can take a few different settings before landing on the ideal one.

                          Is it working as it should - can you check if the water is definitely getting warm? Is the humidifier integral to the NIV or separate?
                          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                          Comment


                            #14
                            Yes will check it tonight i read in the manual that a climateair line is best to improve humidity if using a humidifier. I'll enquire about one on Monday.

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                              #15
                              Hi John.

                              Any joy with improving your air humidity? Hope you're not still waking up with Sahara mouth

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

                              Comment

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