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    Hi Dina ;

    Good to hear from you and that you're not in pain.

    Stay strong, love terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

    Comment


      Good to hear from you Dina. And you are doing ok.
      Love Sheila

      Comment


        Hi Everyone,

        I thought I would post an update about what is happening with me.

        I am still in Wythenshawe Hospital and it's looking as though I will be here for at least a couple more weeks. There was supposed to be a big discharge planning meeting on Friday of last week at 10:30. At 10:15 Bury Social Services rang to say the social worker was ill. The consultant on the ward was not happy. We went ahead with a smaller meeting so that we could start thinking about what care needs I have. Unfortunately the MND has been carrying on regardless and I have lost the ability to do quite a few things. Consequently, my care needs are much higher now. At the same time, my partner is less able to cope with my care needs so I need to ensure that his role is really just what carers and district nurses don't do.

        Despite the above, my real problem is that I am struggling to come to terms with how little I can do. I have already gone way past the point that I had felt would be tolerable and I am finding that my thoughts are becoming very dark.

        In case anyone hadn't realised, MND is s**t.
        Dina

        Trying to keep positive, but not always managing.

        Comment


          Hi Dina;

          It is understandable that your thoughts are very dark. I/we, just hope that things are sorted out for you and the progression lays dormant for a while.

          Hugs Terry
          TB once said that "The forum is still the best source for friendship and information."

          It will only remain so if new people post and keep us updated on things that work or don't work and tips.

          Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

          Comment


            Hi Dina. Sorry about your degeneration. I hope that you get very good carers for home before you're discharged. Lynne x
            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.

            Comment


              Hi Dina,

              I’m saddened to hear that you are still in hospital and mainly because social services haven’t got their act together. You have always come across as a glass half full girl so it is sad that you feel despair, although fully understandable.

              I do hope they can get your care package sorted so you can return home. I wish I could think of something to cheer you up but my jokes are like MND, s**t.

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

              Comment


                Hi Dina,

                I'm sorry for all the tough challenges you are going through. I'm not surprised you feel fed up. I agree with you about how horrific MND is and, to be honest, I don't find any day is easy to get through.

                There are no magic words about how we are supposed to come to terms with losing our independence and ability to do even the most basic of things. Somehow we must find some inner strength to carry on but its not always easy to accept the harsh realities of what we are faced with.

                I'm not a strong or courageous person but I am regularly inspired by you and others in this forum family to try and stay positive and make the best of things.

                Your wonderful personality always shines through on this forum. I also appreciate your honesty, and how you generously share your thoughts and feelings, during the bad days as well as on better days.

                You are an extremely kind, caring and brave person, with a great sense of humour! I really do hope the very sad emotions you are feeling will soon subside.

                Im sorry that I can't visit you in hospital because I would love to give you a big hug and thank you in person for all the wonderful words of advice and support you regularly give me and others in this forum family.

                I know its not always easy to look on the bright side of things, but I am sending you lots of electronic hugs and positive vibes in the hope that you will feel much better very soon.

                Love Kayleigh x
                Last edited by Kayleigh; 9 September 2019, 17:49.

                Comment


                  Hi Dina

                  So sorry to hear that you are still in hospital and the social services are screwed up.

                  I can see you are having a dark day, or indeed dark days and I am sure I shall have some more of those myself in due course.

                  All I can say is that we are here thinking of you and hope that your lot improves quickly

                  Warmly
                  Warmly


                  Andy

                  ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

                  "Things turn out the best for people who make the best of the way things turn out"

                  Comment


                    Hi Dina,
                    Sorry to hear you are feeling down. I think we all feel the same way about MND. I hate even spelling or saying the word. I have myself gone down hill these last few days. Not being able to do things on my own etc. It is so cruel. I am sending you lots of hugs and remember we are all here for you, and everyone else.
                    Love Sheila x

                    Comment


                      Thank you all for your support: it has certainly helped me to get through today. I wasn't going to mention the dark thoughts but then realised I would be lying by omission, and I don't like lying.

                      I am due to see the social worker tomorrow, but I shan't be alone - I have arranged reinforcements!

                      Thank you all, again. I am so glad I joined this forum, although I am obviously sorry that I needed to.
                      Last edited by Gillette; 9 September 2019, 18:15.
                      Dina

                      Trying to keep positive, but not always managing.

                      Comment


                        Good new Dina;

                        Tomorrow nights sleep should be assured, Football is on.

                        Hope you make some headway tomorrow.

                        Love Terry
                        TB once said that "The forum is still the best source for friendship and information."

                        It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                        Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                        Comment


                          Hi Dina,

                          I hope everything goes well at the meeting tomorrow.

                          Social Services should be very apologetic for messing you around and hopefully they will make up for it by organising carers for you in double quick time.

                          I hope you get a peaceful and restful night's sleep.

                          Love and hugs,

                          Kayleigh x

                          P.S I'm very surprised Terry is watching the Football - I thought he'd be watching Supermarket Sweep on ITV2, like I am!! LOL
                          Last edited by Kayleigh; 9 September 2019, 20:47.

                          Comment


                            Football is on Tuesday night Kayleigh, itv1 England v Kosovo .7.45 kick off.

                            Comment


                              Hugs to you Dina

                              Hope the social worker gets things moving even if they need to provide for day and nighttime care

                              Comment


                                Thanks Sheila - I must have read Terry's post too hastily and I was a bit distracted watching the first exciting episode of the new Supermarket Sweep! LOL

                                I hope you are having a relaxing evening.

                                Love Kayleigh x

                                Comment

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