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  • denise
    replied
    Hi Ashley
    nice to meet you. I hope you feel welcome and happy to join in. Nice bunch of people here.
    Denise xxx

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  • richard
    replied
    Welcome Ashleigh to the ‘club’ no one wanted to join. Here you will find a lot of help, support and ideas from those of us on this journey of from those supporting their loved ones. Feel free to ask whatever, nothing is out of bounds, and you will get support.

    Take care

    Richard

    Leave a comment:


  • Barry52
    replied
    Hello Ashley and welcome to our group.

    You will find great support and advice from our members and you only have to ask. Reading your messages it would appear that the physiotherapist picked up quickly on your symptoms and the referral for tests was quicker than normal, albeit you speeded it up with a private consultant. I did the same and diagnosis was confirmed by a second opinion under the NHS. If you need to give up work then we can advise on the benefits that you will be entitled to but in the meantime you have enough going on to process the future.

    Best wishes,
    Barry

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  • Deb
    replied
    Hi Ashleigh,

    A warm welcome to the forum from me. I'ts good you've got an appointment at an MND clinic because hopefully you will get the practical support you need.

    I am obviously so sorry for your diagnosis but I'm glad you've found us ! The forum is a good place for friendship and support from people who really understand.

    If you have any questions please ask as there is usually someone with an answer or someone who can point you in the right direction.

    Take Care of yourself,
    Love Debbie x

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  • Shaun
    replied
    Hello Ashleigh welcome to out little group,
    Like you I started having problems with the little things buttons, scissors and went through carpal tunnel and RSI eventually landing on ALS, I am on slow progression, so hoping you are too. The first few months are scary , we’ve all been there. It’s normal. Take your time to accept it, You will be told we are all different but we all face the same problems along our paths,. So someone on here should be able to give support and advice. Remember you are not facing this alone now you have joined our community, visa not required.
    shaun

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  • Lynne K
    replied
    Hi Ashleigh and welcome to our forums. I’m sorry that you find yourself in this situation. Good luck for your MND Clinic appointment. I sure hope that you find a source of financial support for when the the comes that your current job is not doable. When you feel able to search these forums it’d be good to look for voice banking. That’s having your voice digital saved for using on a compatible device to communicate if your voice fails. Seeing as you are slurring already, time is is of the essence. Take care, love Lynne x

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  • Aalistoun
    replied
    Hi Sue

    Yes thankfully I can claim NHS benefits and I have been assisted greatly.

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  • Aalistoun
    replied
    Hi Gordaan1111 thanks and as I have said the MND Association have been amazing!!!!

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  • Aalistoun
    replied
    Hi Sue

    Yes I was verey lucky with my consultant and very lucky I caught it so soon.

    I spoke to the school and they say that the kids can only see 2 weeks at a time. So I have told them I am sick and doctors are trying to help me.

    Thanks

    Ashleigh

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  • Aalistoun
    replied
    Hi Sarah

    Thanks for your kind words and with this who knows where I will be in 5 years - it is anyone's guess.

    Thanks

    Ashleigh

    Leave a comment:


  • Aalistoun
    replied
    Hi Ellie

    Yes I am talking about benefits as my wife is very worried about money at the moment.

    I have my first appointment at an MND clinic next month and I can't wait!!!!

    Thanks

    Ashleigh

    Leave a comment:


  • Suefromwakey
    replied
    Ashleigh it is indeed a pity you have had to find this site, I can only sympathise with you, not only is this dreadful disease to contend with but you have young children too, there are others on here with children who no doubt will give you plenty of tips.........you only have to ask,

    There are no set symptoms with this thing, literally everyone is different, I am my husbands carer, I know he's had this for 4 years, but only diagnosed in January 2021 after seeing consultants for just about 2 years, in my mind you have had a really quick diagnosis and your consultant is brill. its such a difficult thing to diagnose, seriously is

    You will have a lot of decisions to make especially around the children, best wishes to you

    Sue

    Leave a comment:


  • Aalistoun
    replied
    Hi Mary

    Thank you for your response, the association has been amazing and has assisted us greatly. We have spoken to them about the benefits and unfortunetly we cannot claim. They have assisted us with child support and assisted my wife as well. I cannot praise the MNDAssociation enough!!!!!!

    Thanks

    Ashleigh

    Leave a comment:


  • Ellie
    replied
    Hi Ashleigh and a warm welcome to the forum.

    It is a hard diagnosis to get your head around, that's for sure, especially when there are young children involved.

    I don't really understand what you mean by getting access to public funds - is that benefits?

    Did you ever get, or go to, the NHS appointment ?

    Love Ellie.

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  • Gordan1111
    replied
    Hello Ashleigh. Sorry you find yourself on here. Get all the help and advice and support and knowledge you can.
    xx

    Leave a comment:

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