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  • Olivia H
    replied
    Hello Ken
    Lots of support here for you and your wife, my husband is my rock and I am sure you will be for your wife. A lot to take in at first but if there are good coordinated services, after the initial flurry of professionals, you will get into your stride of adapting and still living life. Many people live with this for years, but it can be a very different experience for each person. Positivity and adaptability help a lot x

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  • Lcfcno1fan
    replied
    Originally posted by Ken View Post
    Thank you everybody for your welcomes. Our first meeting with the MND nurse went very well. She was lovely, helpful and well informed. She's followed up by email, detailing all the actions she's taken.
    I've decided to keep a log book where I record every phone call and meeting. I have a feeling I may need this.
    I've also committed to ending every conversation with....so what happens next? I need to be clear on who needs to do what.
    That sounds like a very practical approach Ken. One of the issues is you will eventually find is there are quite a lot of people involved in your wife’s care (MND team, GP, OT’s, Physio, Dietitian, District Nurse, etc) and it is easy to lose track of who’s supposed to be doing what to help you 👍☺️

    James

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  • Ken
    replied
    Thank you everybody for your welcomes. Our first meeting with the MND nurse went very well. She was lovely, helpful and well informed. She's followed up by email, detailing all the actions she's taken.
    I've decided to keep a log book where I record every phone call and meeting. I have a feeling I may need this.
    I've also committed to ending every conversation with....so what happens next? I need to be clear on who needs to do what.

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  • Derbyram21
    replied
    Hi sorry to have to meet you this way . You will find a mass of information and help here . I have!! Love and Light to you both ❤️ x

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  • Boiler68
    replied
    Hello Ken

    Welcome to the forum to you and your wife. There’s a few of us on here from Lancashire. I’m from Bury myself. I’m on this journey with my husband who has ALS with bulbar manifestations. We’re in our 15th year with this and this forum has been a godsend. I’m one of the ones that doesn’t comment too much but have gained valuable knowledge of how to approach my husband’s issues from all the contributors here. I’m sure you will find your own way - it’s a great group and any issues you/your wife has, you’ll find an answer or solution from forumites new and old xxx

    Best wishes.
    Boiler xx

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  • Tabbycat
    replied
    Ken welcome to the forum, there's lots of support, useful advice and laughter here.

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  • Piglet
    replied
    Ken welcome to the forum. The first few months can be very daunting. Take each day as it comes. It’s my husband with MND and he’s in his fifth year. He’s still walking. You will learn to deal with things in time. So be kind to yourself. Wishing you and your wife good wishes. Xx

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  • Heather R
    replied
    Hi Ken, welcome to you and your wife to this forum. Hope you find it as helpful and informative as I have done. Heather (aged 75) xx

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  • TinyLady
    replied
    Welcome Ken - I hope you find us all supportive and informative. Sending hugs to you and your wife xx

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  • Ellie
    replied
    Ken A warm forum welcome to you and to your lovely wife.

    Love Ellie xx

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  • denise
    replied
    Hi Ken

    My husband is 71 this year. Hes been diagnosed 6 years now. Also has ftd.

    At least you have found us and we can all share the highs and lows.

    I'd also recommend you keep a diary and write as much down as possible.

    Love and hugs to both
    Denise xxx 💗

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  • WheelsOfSteel
    replied
    Welcome Ken
    If your MND Nurse is anything like mine, she is more of a "regional MND Coordinator" and will be your vital link to many other specialists. Very useful to know.

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  • LindaB
    replied
    Ken warm welcome to you & your wife. This forum is a great place to drop into...look forward to reading your posts😉xx

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  • DeeH
    replied
    Good luck with the MND nurse visit.

    The MND association helplines are good for advice too.


    Best of luck

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  • matthew55
    replied
    Welcome Ken. We have all trodden the same path. Feel free to ask for directions. 😊🤗😜🙄xx

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