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Thread: Hello

  1. #11
    Forum Member Terry's Avatar
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    Hi Bird and welcome to the forum;

    It is a roller coaster of emotions for a couple of months. I am guessing that you have Mnd and not your husband. Hopefully there is a neurological nurse in your area that you can call to get things moving. It's also worth getting in touch with your local Mnda branch to see if they have a visitor that can see you and help get things.

    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 keeps 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.

  2. #12
    Forum Member Ellie's Avatar
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    Hi Bird,

    If you feel you need an OT's input, contact them and give a gentle reminder (!) that you need to be assessed.

    Ask at your MND Clinic if they are participating in any clinical trials. They're not always advertised and I know that my clinic has some in 2018 - as a newly diagnosed person, you'll likely fulfill enrolment criteria (unlike me whose ALS is too advanced)

    You can also check https://www.ukctg.nihr.ac.uk/#popoverSearchDivId

    and https://clinicaltrials.gov/ct2/resul...ate1=&recrs=ab



    Love Ellie.
    Last edited by Ellie; 2nd December 2017 at 15:12.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  3. #13
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    Hi, sorry to hear about the diagnosis, my wife was given her verdict in October and to be honest everything has been hectic since.
    You, if like me, will go through a lot of different emotions, but the MNDA have been really helpful, and I got a lot of good advice from the forum too, I can't reiterate enough about accepting all the help available and staying strong not only now but also in the months, hopefully years ahead.
    Tim

  4. #14
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    Hi Bird. I was diagnosed last month. It hit me like a ton of bricks despite having my suspicions for quite some time. I have a lovely supportive husband. He has helped me get out to the shops etc since my ballance is dreadful and my legs stiff and inflexible. I've fallen dozens of times but not when I have my husbands arm. We've been taking such expiditions as 'team work.' I now have a neurology support team on my case so I feel that there'll be people there to help when I need it. This site is a great resourse.

  5. #15
    Forum Member Bird's Avatar
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    OT came today and i had a bad night so did some blubbing
    getting a splint sorted for my left hand and the ball rolling with physio and Ss .
    think my OH is getting run down with sorting everything out and running a business.
    still havent managed to talk to my mum although i do text her, i cant deal with her grief atm.
    we are off to brigton for a pre screen for a drug trial next week so if anything can come out of this id be helping others in the future.

  6. #16
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    I am the mother of a beautiful 33 yr old woman who had a lovely baby boy in May a brother for his 8 yr old sister and she was diagnosed with this horrendous disease in September, her whole family are completely devastated, how do you come to terms with this? Thank you.

  7. #17
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    Oh Jaxx, that is so terribly sad.
    It's no surprise that you are all devastated. Your daughter is so young.
    I don't think I can begin to tell you how to come to terms with this.
    It's good that you have made contact with the forum where there is always someone who can offer advice and help.
    Hopefully your daughter will have a network of healthcare professionals who will be helping her.
    The MNDA will have ideas of how to support your 8 year old grandaughter.

    You're all in my thoughts,

    Bern x
    Last edited by Bern; 6th December 2017 at 16:48.

  8. #18
    Forum Member Ellie's Avatar
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    Hi Jaxx,

    Sorry for your daughter's diagnosis.

    Sometimes I think it's easier for us with the MND to come to terms with our diagnosis, than it is for our parents. My mum and dad really struggled to come to terms with their little girl's diagnosis (I was 38!!) It took a while, but they did.

    My dad was more open to talk to me about my ALS/MND, which helped him accept it. I was (still am) upbeat and positive about my new life and that rubbed off on him. My mum took longer to process her emotions, but I tried to engage her in aspects of my progression. I brought them to 2 clinic appointments which, for my mum in particular, was a way to understand what was happening to me, and she was less afraid.

    As a mother myself, I can't imagine what it must be like to be told that an adult child has a life-limiting illness, but I suspect it's truly heartbreaking.

    Don't be afraid to talk about it Jaxx - talk to your daughter, your family and friends, post on the forum, and, it will get easier, I promise you.

    Love Ellie.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  9. #19
    Forum Member Dude's Avatar
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    Hi Jaxx There is a tremendous amount of research taking place nowadays,so please be positive about a cure for your daughter. I am 69, had mnd pbp for about 10 years and feel a cure is just around the corner. Love to all. Dude xo

  10. #20
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    All of these comments are the reason this forum is a great place to be. Hope and positivity are great healers on their own.

    I can't imagine what you're going through Jaxx. I'm 60 and plan on living we'll into my 80's. I have to believe that, it's hope that gets me up every morning. Have that hpe for your daughter and support each other.

    Your family is in my thoughts,
    Rick
    Never a victim, always a fighter

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