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    Welcome to our newest forum group

    This forum group has been created to allow you to ask us, the MND Association Connect team, questions about motor neurone disease. We will aim to answer as soon as possible.

    For more information on who we are click here.

    #2
    Welcome Mnda Connect;

    Many of us here can't talk or use a phone. I sent an email to yourselves and an automatic reply said that it could take three days for you to reply.

    I just wonder if, apart from the weekends they could be answered sooner, as sometimes they are a urgent cry for help and it can be our only way of asking.

    It is good that you will be looking in here as well as maybe you can put us straight on somethings.

    Regards 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


      #3
      Hello Terry

      Thank you for your very kind welcome.

      Whilst our automated email response does give our response time as being three working days, it is very rare that it would take this long for someone to receive a reply from us. Between 9am-5pm Monday-Friday the emails are checked constantly by the team and answered. If an email is particularly complex, it might take slightly longer for us to respond.

      We are really looking forward to being a part of the forum and giving people another way of being able to contact us.

      Kindest Regards

      MND Connect

      Comment


        #4
        Can we have the first names of people posting, just to make it a bit more friendly, if not don't worry.

        I did get a reply sooner than three days and unfortunately for many of us emails can't be used as a secure and reliable form of communication.

        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


          #5
          Welcome to the forum family MND connect. Agree with Terry friendly names would be nice and more personal

          CCxx

          Comment


            #6
            Hi Terry and CC

            I've spoken to the rest of the team and we all really like your suggestion of us using our first names rather than just MND Connect. The whole MND Connect team has access to this account and will be checking it regularly so posts will come from various team members. We are only a small team of 6 people though.

            Kindest Regards

            Rachel

            Comment


              #7
              Thanks Rachel;

              Ahh, that's better.

              Regards 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


                #8
                A great idea MND connect team and I'm sure we will find this useful.

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

                Comment


                  #9
                  Thanks Barry, we really hope that people do find this useful.

                  Kind Regards,

                  Adele

                  Comment


                    #10
                    Hi Adele Give us a song luv. Dude x

                    Didn't Graham post on here ?.

                    Comment


                      #11
                      Hello Dude

                      We aren't aware of any posts on this thread by Graham.

                      However, we are glad to now be able to help people regarding questions about motor neurone disease.

                      Many Thanks

                      Rachel

                      Comment


                        #12
                        My mistake , sorry Rachel. Dude

                        Comment


                          #13
                          I think this is a great idea. I suspect this is a bit late on a Friday but I have a question. Not sure if it is a bit controversial though.

                          Does what you eat have any impact on MND? Are there worthwhile supplements really?

                          Comment


                            #14
                            Morning Susan,

                            Thank you for your question.

                            With regards to the effect diet may have on MND. We aware of a small study carried out in the USA which highlights the potential benefits of eating a high calorie, and high carbohydrate diet. The studies findings were published in The Lancet in February 2014, and although the researches acknowledge that there needs to be further studies, it appears that the initial outcomes of the study were quite positive.

                            A brief outline of the findings were as follows -

                            Loss of weight, both muscle and fat, is common as ALS [MND] progresses, and patients experience more difficulties eating, swallowing, and maintaining their bodyweight. Recent work suggests that these problems might also contribute to the course of the disease: patients who are mildly obese are more likely to live longer, and mice carrying a gene which causes ALS lived longer when they were fed a calorie-rich diet high in fat.

                            A good way of fortifying foods is to add cream and butter to things like mash potato. So it really is a matter of not watching the calories and eating a wide range of foods as you possibly can.

                            I do hope this is helpful Susan.

                            Kind regards

                            Ruth

                            Comment


                              #15
                              That is really interesting. Thank you.

                              Sadly I was never overweight so can't manage that bit but I have been eating high fat and high carb foods anyway since I was diagnosed so while I can still eat that is obviously something worth continuing to do. It is a good thing I am addicted to pork pies at the moment!

                              Comment

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