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    Terrible time

    To say im having a terrible time is a understatement. ill start at the bottom. my feet have blown up and are serverley itchy my legs are also bigger than normal and I know I've got to keep them up but it's easier said than done with a sore bum bone. all the pressure goes as I hate lying flat. constipated weekly and having to do enema to get it out lactalose just don't do nothing. my wife makes my peg food high in fibres ect?plenty of water. just nothing. i think it's her but she thinks not. then the arms are completely useless I wish they could come off. my neck has given up pretty much completely to the point of jelly head but its scary definitely the worse part for me so far. no cough at all. nasel drip that i can't get rid of. there is more like being mute don't it ever give us a break as i feel Switzerland may be a trip in the near future.

    #2
    House44 I'm so sorry to hear what you are going through. Life shouldn't be this cruel.

    I visited my husband in the hospital. He looked terrible, so quiet and tired. I took him outside for a smoke but he could just about keep his eyes open. This isn't the person I know who laughs and shouts at the TV. Theyve even got him breathing oxygen and I told them its wrong. I honestly wish he could die. It sounds dreadful but it breaks my heart seeing him like that.

    xxxx
    when i can think of something profound i will update this.

    Comment


      #3
      House44 so sorry your having a rough time. Do you have any professionals to ask their advice and help. District nurses are generally good for advice. Hoping you get some relief very soon xx

      Comment


        #4
        denise sorry you got upset at the hospital. Have the staff given you any information on how Stephen has been since his admission.
        Hope your getting some rest xx

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          #5
          House44 so sorry to hear of your suffering. I haven’t had the same leg problems, surely something could be provided to help with the pressure on your bum, I am sure others will advise. But I do really identify with your problem of constipation, which is a pretty constant challenge for me, and can seem the last straw when on top of everything else. I found lactulose useless too, but docusate and senokot have helped me a lot. The doctors need to try other things until a better balance is found for you. Do hope you can get better help with it.
          denise that must be so sad for you to see. Love and hugs xx
          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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            #6
            Piglet I don't think they are treating him for anything now. Hes had a scan on his head but they wont do anything about that. Hes had an x-ray on his chest but no idea why. They are giving him oxygen. Tbh it's hot on the ward, the mattress has a rubber cover. I don't think its helping him. He has nothing to occupy him. I've just bought him a radio with earphones. He could leave the hospital but this flat is totally unsafe and I have only a few bits of equipment. They have tried to get me to take him home. They have to find a home for him. That's the problem. 😕
            when i can think of something profound i will update this.

            Comment


              #7
              Sorry to hear you are having such a bad time. Something similar is happening to me, particularly with my neck which is getting worse and worse. Don’t blame you for thinking of taking the Switzerland route.

              Does anyone on here know of people who have taken this route?

              Comment


                #8
                Originally posted by Aidan in Shrewsbury View Post
                Sorry to hear you are having such a bad time. Something similar is happening to me, particularly with my neck which is getting worse and worse. Don’t blame you for thinking of taking the Switzerland route.

                Does anyone on here know of people who have taken this route?
                My husband became a member and obtained all of the necessary information but decided not to go ahead as mobility has to be reasonable to be able to do it. And it felt too early when his hands were just about capable. Now not possible. The literature is very helpful.
                Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicated with eye gaze

                Sense of humour intact throughout.

                Sadly passed away peacefully 2/9/22

                Comment


                  #9
                  Originally posted by House44 View Post
                  To say im having a terrible time is a understatement. ill start at the bottom. my feet have blown up and are serverley itchy my legs are also bigger than normal and I know I've got to keep them up but it's easier said than done with a sore bum bone. all the pressure goes as I hate lying flat. constipated weekly and having to do enema to get it out lactalose just don't do nothing. my wife makes my peg food high in fibres ect?plenty of water. just nothing. i think it's her but she thinks not. then the arms are completely useless I wish they could come off. my neck has given up pretty much completely to the point of jelly head but its scary definitely the worse part for me so far. no cough at all. nasel drip that i can't get rid of. there is more like being mute don't it ever give us a break as i feel Switzerland may be a trip in the near future.
                  hello

                  sorry to read all this. I am not quite at that stage now but I am a member with Dignitas in Switzerland as I don’t want to end up like my late dad. Just fyi it takes up to 3 month for the whole process and Dignitas requires the patient to have enough strength to conduct the very last step in the process themselves. So timing this right could be at the essence.

                  all the best to you
                  marc

                  Comment


                  • Sorry to read members having severe difficulties.

                    Where are the professionals in all this? And our MNDA??

                    Is the palliative care team involved?

                    It is important to have plenty of morphine in the house at times like this, especially with the hot weather.

                    ​​​​​​​Love and hugs xxxx

                    Comment


                      #11
                      Originally posted by Aidan in Shrewsbury View Post
                      Sorry to hear you are having such a bad time. Something similar is happening to me, particularly with my neck which is getting worse and worse. Don’t blame you for thinking of taking the Switzerland route.

                      Does anyone on here know of people who have taken this route?
                      Dignitas have an excellent website that guides you through the various steps to getting the “provisional green light” for a self determined end of life. Once you have the provisional green light it can take a further circa 3-4 weeks from telling them you want to go ahead to them setting things up to proceed. I understand very minimal movement is required to administer the drug but you have to be strong enough to travel.

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                        #12
                        Is Switzerland the only country that does this?
                        when i can think of something profound i will update this.

                        Comment


                          #13
                          denise I think a forum member mentioned Canada its available. I won't read about it. I can't explain why I won't. But I so get why people opt for it.
                          Diagnosed May 2021 bulbar onset als.

                          Comment


                            #14
                            Originally posted by denise View Post
                            Is Switzerland the only country that does this?
                            No, there are other countries but lack of residency rules and different qualifying criteria make Switzerland more accessible.
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                            Comment


                              #15
                              Ellie i did wonder re residency rules. Its such a legality.
                              Diagnosed May 2021 bulbar onset als.

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