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    Learning Lessons

    Hi John,

    MND is hard and that is from someone who has been living with it for 15 or so years. You are only in the foothills, yet you are criticising the people who have trodden the road who know just how tough it is!

    I do hope Streetwise doesn't leave this forum. He for one tells it as it is.

    MND is a progressive disease and that means tomorrow will be a little bit worse. It is essential to prepare for life at home. It is the best option, as you have more control over your care. Care homes generally do not have 'the wear with all' to provide the necessary care in the later stages. That is when the sh** hits the fan. That is what we are warning you about. Hospitals and even hospices can not provide the necessary care and it was harrowing to hear from our Terry in his final days at the hospice.
    Copyright Graham

    #2
    Hi Graham,
    I n my opinion hospices and Palliative care teams can provide good quality end of life care.I have had many friends and relatives that have had either been in hospices or had end of life care at home.
    I accept some people might disagree .
    However ,I have witnessed good palliative care in both situations.For myself I have been very supported by the palliative care team since diagnosis who are aware I wish to remain at home for end of life care.I feel confident both my husband and I will receive their professional care to keep me as comfortable as possible.
    I would hate members on the forum to become fearful if they are hoping to be considered for hospice care .Sorry to hear about Terryโ€™s experience.

    My advise to members would be to discuss with your care team what your wishes are and ask the questions you want to know .I also completed the Respect form (formerly called DNAR)with palliative nurse after an in depth discussion.This is now on my medical records with GP and I have my copy which goes with me on any hospital admissions.I can change it at any time.

    Members on here are at different stages of MND and have to cope at their own pace about planning ahead.For me it helped early on to have honest discussions with my husband , son and daughter about the options available to me for care at late stage .

    Some members might want to research and plan ahead, others may not feel able or ready to consider such things yet.

    Best wishes
    Mary

    Comment


      #3
      Hi Mary,

      I agree with much of your comments, while recognising that there is a postcode lottery for palliative care. From what I have seen of the local palliative care team, not being a user, I was confident in them.

      The problem is securing the service when the time comes. Although I believe that McMillan provides a service too.

      Hospice places are hard to come by except for respite and the last few days. It is the upheaval involved that causes the problem. Terry was only going in for a scheduled respite but he foresaw the problems, the hospice was not able to cope with his complex care. Not being able to talk causes immense problems with the care.

      Having a supportive family is also an essential element. This too was a feature of Terry's passing.

      Best wishes
      Graham
      Copyright Graham

      Comment


        #4
        It boils down to denial, I know about it as I was in it for ages.
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

        Comment


          #5
          Yes, me too Matt! I didn't smoke, hardly ever drank and barely knew about MND let alone knew that I could get it!!
          Copyright Graham

          Comment


            #6
            For the first time EVER, there are a couple of treatments available for MND for a small subset of variants. They are experimental and you may have to ask to join the trial.

            Amazingly, our spinal cord falls apart in many variants of MND. This is detectable with a spinal tap.

            The NHS typically tries to fob you off, but there are exceptions to every rule.

            Asking / talking about the above two FACTS with your consultant will tell you everything you need to know about your consultant!
            Copyright Graham

            Comment


              #7
              I registered for MND-Smart which has recently opened trials at St Georgeโ€™s in London so hoping to be called in despite losing my voice in the meantime.

              Is anyone on here involved in that trial anywhere?
              Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.

              Comment


                #8
                John, I signed up for the MND Smart Trial at Salford Royal (Greater Manchester) but failed that they do initially. But I had all of those tests and more done by referral from my GP and results were good. I contacted the trial specialist nurse via email to let her know and since then asked in an email if sheโ€™d yet had authority for me to go back onto the trial. She doesnโ€™t usually reply to emails but I expect that sheโ€™ll catch up with me at my new clinic appointment in the first week of September. 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.

                Comment


                  #9
                  I'm with Salford but haven't heard anything from them in ages.
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

                  Comment


                    #10
                    My next clinic appointment at Salford is 1.30 on 8th September Mathew. Iโ€™m with a great female neurologist. I donโ€™t think that weโ€™re supposed to put names on here. I vaguely remember that you are with somebody else. How come youโ€™ve not heard from them? 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.

                    Comment


                      #11
                      I have no idea. I'm seeing my community neuro tomorrow so I will ask her. ๐Ÿ˜๐Ÿ‘๐Ÿ˜˜๐Ÿ˜xx
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

                      Comment


                        #12
                        Good luck for that Mathew 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.

                        Comment


                          #13
                          I am convinced that in certain circumstances individuals can concisely decide to die. I have experienced it.
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

                          Comment


                            #14
                            Yes, I agree Matt. When your loved ones turn against us with MND, life can seem like it is impossible.

                            People throughout the ages must have had MND. It was always considered to be a 'curse'. There must be a possibility/probability that those with MND were sacrificed or used as bait for the young warriors by the village elder.
                            Copyright Graham

                            Comment


                              #15
                              Spartans threw us off cliffs, the Chinese kill girl babies, animals do their thing. Life is cheap. ๐Ÿ˜กโ˜น๏ธxx
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

                              Comment

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