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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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                      #11
                      Hi Karen, my husband and I are finding similar, when he first gave up work colleagues and friends would visit when covid permitted but slowly they have drifted away and some he did say he didn't really want to see as his condition got worse. I feel angry for him that friends haven't kept in touch as he was one that would help anyone. A few close friends are in touch but less so. He needs me here most of the time so I don't get out much either, and when I do I feel guilty as he can't. It is very isolating and feels like life just goes on around you and you are left behind. I wish I had answers but just going through this, and I'm sure many others are too.

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                        #12
                        Sorry to read this Karen.
                        I was chatting recently to a lady who lost her husband to MND and this aspect cropped up in their experiences.
                        It's something that had crossed my mind with a couple of folk peripheral to my social circle. I initially thought I was imagining it, but I think it's one of the complex aspects of human nature - particularly when folk don't know how to react.
                        I have two really interesting friends, not immediately local, but both have had some challenging circumstances of their own over the years. They have both reached out, as well as initiating some of the more challenging conversations on some subjects looking ahead, in terms of awareness and preparedness. This has been immensely helpful, as their own experiences add value to areas discussed.
                        I think their previous experiences (they have actually said so), have helped in their outlook. Conversation is normal, blunt and at times dark humour, which helps.

                        I appreciate how difficult it must be if isolated, or more worryingly social circles actually shrinking (beyond any practical difficulties from your side).
                        I'd certainly be looking at specialist helplines like the MNDA, local disability action groups, etc., as well as anything that an employer, union or pension provider may have.
                        These may not be particularly 'social' but they can be someone on the end of a phone adding practical and experienced advice and they may be aware of something aiding social interaction in your locality? (Particularly helpful as a listening ear, if you are also hitting bureaucratic obstacles around healthcare etc. too).

                        I'm became ill with an unrelated illness about 15 years ago, that impacted quite a bit on my social life and travel inconveniences. I ended up with a bit of a network of cafes / garden centre cafe / museums / libraries with accessible facilities that I found pleasant enough and return to. Within a relatively short time I also ended up with a bit of a new social circle around these places that was positive and reasonably outward looking.
                        2020: odd symptoms. Nov 2021: Hand atrophy.. Mar 2022: Second arm atrophy - Confirmed Apr 2022: MND.
                        Also Crohn's Disease from 2005ish. (Hi, I'm Dan in Cheshire)...

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                          #13
                          I agree about the isolation, I started to attend a carers group at the hospice which coincided with a patient group so I could go without having to arrange a carer or feel guilty.

                          However one lady commented that she liked going to the carers group because when she heard about how dependant my husband is it made her feel better. Can't say it did much for my mental health.

                          I used to be quite a social person, but really don't want to do anything outside of the home now. Hubby doesn't want to go out except for appointments and the hospice and I want to spend as much time as possible with him.

                          I have recently gone back to work part time and flexible, albeit working from home, only made possible due to an excellent CHC care package which I use to employ 2 PA's. This provides me with some normality, and with recent additions to hours for respite i am able to get out for an hour a day to walk the dogs. This provides my head space and a change of scenery for me and a different person for him to talk to.

                          The world has become quite small. I do have the respite hours if I need them, but can't see me going out socialising - I just don't feel I want to. People have asked, but it just doesn't feel right. Hopefully those people will still be there when I will need them.
                          Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicated with eye gaze

                          Sense of humour intact throughout.

                          Sadly passed away peacefully 2/9/22

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