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    Branch meetings

    It has come to my attention through my local branch that MNDA has advised the following.

    Barry

    Dear Colleagues



    We are aware that the spread of coronavirus in the UK may be causing concern. Our priority, as always, is to ensure that everyone affected by MND has the most up to date advice and the support they need and that their health is not put at risk by our actions.



    With that in mind, if you are living with MND or you are caring for someone with MND please discuss any specific concerns you have with your health and social care team. They will be able to give you advice and information which takes into account your specific circumstances.



    You will find links on our dedicated website page to the organisations providing the most up to date information.



    A number of branches and groups have already suspended their get togethers, meetings and support groups to reduce the risk of spreading the virus to people with MND or those in contact with them. Our teams have discussed the ongoing situation with neurology consultants and MND specialists in our care networks and, on their advice, we are recommending that all branch and group meetings where people living with MND and their carers are present taking place before the end of April are suspended. Of course, we will continue to monitor and review the situation and update you if advice changes.



    Our advice is also that AVs and other support volunteers should where possible try to avoid face-to-face meetings with people affected by MND for the time being to minimise the risk to those most vulnerable to this virus.



    We realise that branch and group get togethers and AV visits are a valuable source of information, social interaction and support. Do please consider alternative ways of keeping in touch with each other, perhaps by phone calls, emails, Facetime, Skype, social media etc as we want our community to stay connected and in touch.



    If you need further support our helpline MND Connect – 0808 802 6262 - is available Monday to Friday between 9am and 5pm and then 7pm to 10.30pm.



    This is a fast changing situation, and we will review the situation and government advice regularly and keep in touch with you throughout.
    I’m going to do this even if it kills me!

    #2
    Hi Barry,

    It makes sense as I think that very soon it will get bad. Tough times especially for those of us who have carers.

    I am still socialising but reduced it a lot.

    Hope we all stay clear of it.

    Got some loo rolls from Roy's in Sudbury today.

    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


      #3
      Hi Terry,

      I have no idea how many toilet rolls I have at home having been away for 10 days and from what I have read in the media I will be buying the Sunday Times which usually takes a few days to read but has enough pages to keep me going lol.

      I hope your local Costa remains open.

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

      Comment


        #4
        Hi Barry;

        Seems there is no worry about toilet rolls, the largest manufacture said they have millions in their warehouse.

        I am going to be more careful now, so not going in costa or maybe gym. A week or two won't harm me and we will see where this thing is going.

        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
          My husband Steve goes to music sessions with his fiddle two or three times per week, occasionally four. I’m mostly at home but he could bring the virus home to me. He doesn’t get the potential risk. He’s still shaking hands and brags about this. I don’t want to vex him but will have to bite the bullet and broach the subject. 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.

          Comment


            #6
            Hi Lynne,

            I know the worries but it is hard to stop the other half from having a life at the moment.

            I have been doing fist bumps for years now, even to doctors etc.

            My wife still does things and I know better than to tell her what she can do. I just hope she is more careful and we stay well.

            I guess Steve is playing in pubs etc, hopefully the government will bring in some of the Italian rules soon and stop your battle.

            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


              #7
              Hi Barry

              Seems like carers are between a rock and a hard place - take the risk of infecting or being infected by your client versus leaving that person alone without help when they can't cope without it.

              I'm lucky I don't have to face that and in fact am able to broadly self isolate given I'm at risk and and for example probably will not see my mother for Mother's Day just in case as she is certainly vulnerable although does not need daily care
              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


                #8
                Thanks Terry, the music sessions are in pubs, often crowded. So very worrying and so is Steve’s hand shakes, 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


                  #9
                  Can understand your concerns, Lynne;

                  Not the best of places, wife is still going to the gym , which I would say is a lot less risky.

                  Fingers crossed, 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

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