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    Feeling isolated

    My husband was diagnosed with MND last November. We have no family and the friends we thought we had, seem to have drifted away. I try very hard to be positive and to make the most of our time together.
    However, I feel very isolated and would just like to occasionally talk to someone in a similar position.

    #2
    Karen, It is really tough caring for a loved one. If you get in touch with the connect team via the helpline number or through this forum and ask to be put in touch with an ASC ( Area Support Coordinator) they should be able to help by teaming you up with a local AV ( Association Visitor)

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      #3
      Thank you
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        #4
        It is why we come here
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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          #5
          Karen Fountaine You certainly find out who your friends are when you have MND. But, in fairness, many people just don’t know how to handle it. I try to normalise it as much as possible and to be open about the challenges. It seems to help friends and family. You’re always welcome here and, as Bowler says, the local branches of the MNDA do a great job bringing people together (well ours does!)
          Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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            #6
            Karen Fountaine. I don’t know about you, but I am finding that with the removal of Covid restrictions, my friends are mostly returning to “normal “ activities and socialising with enthusiasm (and some of them getting Covid in the process). So busier lives are leaving less room for eg visiting me. I quite understand this, and can’t help wishing I could join in too. But what I can join in with these days is massively reduced. And for you good carers, just as restricted if you’re not being well supported.
            Did you manage to get any more support from professionals or mnda or anywhere Karen?
            In solidarity and sending love
            Heather x





            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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              #7
              Thank you to all of you for your supportive advice. I live in Pangbourne, so if any of you are free for a coffee some time, please let me know.
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                #8
                Hi Karen

                Think a lot of us feel the same. I care for my husband but I feel very isolated sometimes. There are support groups about like caring for carers which is, local government I think, and a lot of charities that do different activities. Ive had a prescribing nurse get in touch with me. I think, but I couldn't swear, this was from local GP surgery though again it might have been the caring for carers team. She was going to arrange something for me. She suggested gardening or knitting but I cant knit and live in a flat but hey I'm sure there are other things. 🙂 Perhaps a walk in the park, group activities where you can meet other people.

                Also your local mnd group. They might meet up or there's the online version which is quite nice. Some do a meet up for carers which could be lunch or just coffee. We are supposed to be meeting up with Cornwall branch sometime soon. You can also request an AV, an association volunteer, who you can meet up with in person or phone/email.

                I'd happily pop over but I'm in Plymouth.

                Lovely people on here so don't think you are alone. I'm usually about.

                Love and hugs
                Denise xxx
                when i can think of something profound i will update this.

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                  #9
                  Hi Karen. So sorry to hear about the situation you find yourself in, it can be very isolating. We were very lucky as my wife (and carer) was put in touch with another couple nearby in a very similar situation and they are able to meet up and support each other. So do get in touch with the MNDA, fingers crossed they may be able to help. They also work with hospices such as Marie Curie who may also run support groups. Wishing you all the best.

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                    #10
                    Oh Karen I'm so sorry. We have an association visitor, she's great, never flinches when I use very bad language when I'm talking about the powers that be, funding the care.
                    We are also lucky to have three really good carers who we can just be ourselves with.

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