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Thread: So quick - anger, relief and regrets. (Bulbar)

  1. #11
    Forum Member Terry's Avatar
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    Shame as it's good to name people that do a less than adequate job but would put the Mnda in a dodgy position, Steve;

    It does sound like the neurologist needs a bit of education so maybe you and Phillip could email Mnda connect with his name and copy your posts.

    It is surprising how many neurologists are very bad at delivering such devastating information and so often there's no one there to talk to over a cup of tea, (relaxed) afterwards.

    I know the Mnda have looked into this and have improved it.

    It's only by highlighting this that we can get some improvement.

    Love 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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    Strange that we can name Doctors who do a good job, but we cannot name Doctors who treat us badly.


    Steve,

    You should make a formal complaint if you feel strongly about it.

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

  3. #13
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    Hiya,

    I don't particularly feel the need to get anybody into trouble but if there is somewhere I can post this that would help another family to not go through the same cold and thoughtless set of circumstances then I would be happy to do so.

  4. #14
    Forum Member Barry52's Avatar
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    Hi Steve,

    If Chesterfield hospital is failing in its duty of care then it should be highlighted but I appreciate that you have other things on your mind.

    Barry
    Life is a journey, not a destination.

  5. #15
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    Hi everybody, going back to the charity side of things for a moment I think I'd like to start by running a donation at mums funeral - it might not be a lot but it's something. Obviously I'd like it to get to the right people where it will be focused on both research and helping others with the disease. Can anybody point me in the right direction or give me any ideas about where to start as I've never done any charity work before.

    Thank you.

  6. #16
    Forum Member Terry's Avatar
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    Hi Steve;

    Thanks for looking at helping us and for getting donations for Mnd.

    You can ring Mnda connect and they will point you in the right direction. It depends how involved you wish to become as for charity work. Your local branch of the Mnda will be pleased for your involvement and again mnda connect will point you in the right direction or we can help you.

    Love 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.

  7. #17
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    Hi Steve. There is a Derbyshire group and a South Yorkshire group. You will find both online. We go to the meetings in Sheffield (next meeting tomorrow) but they will both be more than pleased to hear from you. Anything you can do to help will be greatly appreciated. I hope you are ok after losing your mum. Kind regards Philip.

  8. #18
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    Thank you. I have emailed MND Connect.

  9. #19
    Forum Member Aklynne's Avatar
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    Oh Steve I am sorry. My mum started like yours in October. She can't speak now at all. We are still waiting for the urgent tests they wanted her to have 4 weeks ago and every week it gets worse. Same thing. Suspected bulbar palsy. She is older than your mum was but is the main carer for my Downs sister on weekends and holidays and my dad. We are doing what we can but my parents wont talk or ask for anything. I'm struggling to understand this. Why its happened to her. She is the nicest most caring person. I feel numb and in denial like they are.

  10. #20
    Forum Member Terry's Avatar
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    Hi Aklynne and welcome to the forum;

    Sorry to hear what you are all going through. I hope you have support for her, especially a SALT to help her to communicate.

    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.

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