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Thread: Feeling so alone

  1. #1

    Feeling so alone

    Hi everyone
    I was diagnosed 10 months ago and disease is rapidly progression..
    Wonderful family and friends but feel so alone and isolated.

  2. #2
    Forum Member Terry's Avatar
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    May 2012
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    UK
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    Hi Scaredycat and welcome to the forum;

    We will try and make you less alone and maybe we can help you as well in otherways.

    Sorry to hear that you have had rapid progression and I hope it slows down.

    Best wishes, 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.

  3. #3
    Forum Member Kayleigh's Avatar
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    Nov 2018
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    Hello cat,

    Welcome to the forum. You will find a lot of friendly and supportive people here. We will support you and advise you as much as we can.

    Now that you have made your first post on this forum, please do not feel shy about giving us more information about yourself, if you want to. You are also welcome to ask any questions or ask for advice. We are here to support you! Sometimes it is not always easy to talk to your family and friends about your worries because you may be concerned about upsetting them - but go ahead and ask whatever you like on this forum. Having MND can feel isolating because we often don't know anyone else who has been diagnosed with it, and so this forum is a great place to communicate with people who understand what you are going through.

    Have you spoken to anyone on the MNDA connect helpline yet? They are very friendly and helpful. Someone there will be able to talk things through with you and can let you know what support is available in the area where you live.

    Kayleigh x
    Last edited by Kayleigh; 12th December 2018 at 18:34.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  4. #4
    Forum Member Lynne K's Avatar
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    Nov 2017
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    Hi 'cat, welcome to the forum. I'm sorry that you feel lonely and isolated. As others have said posting between forum members can help you to feel less alone seeing as we are all in the same boat although have different MND variants and/or deterioration speeds. Carers on the forum too are a source of support as they are either living with the desease or have done so. Kayleigh's suggestion to speak with MND Connect is a good one. I hope that you have enough professional support ie Occupational Therapist, Speech Therapist and Physiotherapist. If not then ask at your next hospital appointment. I too hope that your symptom deterioration slows down. Your local MND Association will have volunteer visitors. If that sounds like something that you would benefit from, then MND Connect will be able to give you the relevant contact numbers. Have you done voice banking yet? If not it's best to start as soon as you can. I was introduced to this by my Speech Therapist. I've given you quite a lot to think about. I hope that it doesn't make you feel overloaded. I'll watch out for your posts. Take care, Lynne x
    Last edited by Lynne K; 12th December 2018 at 20:52.
    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.

  5. #5
    Forum Member
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    May 2018
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    Hi Cat and welcome to the forum. I am so sorry for your diagnosis and that your MND is progressing quickly. I really hope it slows down.

    I really appreciate your username because we all feel scared at times. I guess we try to put on a brave and positive face but it's not always easy and the progressive nature of MND is unpredictably scary.

    There is always practical and emotional support on here , so hopefully you won't feel so alone.

    Take care of yourself.
    Love Debbie x

  6. #6
    Forum Member Barry52's Avatar
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    Hi Scaredy-cat and welcome to the forum.

    As our number 1 topcat (aka Terry) says you are not alone here. I hope we can help you deal with life and all this disease throws at you. Please ask for advice or support at any time.

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

  7. #7
    Forum Member
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    Welcome to the forum, like everyone says you are not alone. You will find lots of help and advice on here

  8. #8
    Thank you so much for replies....
    Reading through...you all seems such a lovely bunch of people... x

  9. #9
    Forum Member Kayleigh's Avatar
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    England
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    Thanks for getting in touch again. We do our best to be as welcoming as we can. How are you today? I hope you are feeling a bit less lonely.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

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