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Thread: Hopewinds

  1. #1
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    Hopewinds

    Hopewinds picture.jpg

    Hi, my name's Phil. I was diagnosed with MND/ALS in July 2016. I am a member of a small informal club of people living with MND and other neurological conditions, together with their carers, family and friends. Our aim is to support research to foster wellbeing in other people living with such conditions (not exclusively those with MND), hence the name Hopewinds (helping other people with neurological diseases).

    Our focus is on wellbeing and quality of life. We will not be involved in any medical research which we leave to the experts, such as MNDA. We aim to provide user involvement in technological research so that the voice of people like myself can be heard and can influence research design and impact for future interventions.

    If you're interested in seeing what the group aims to achieve, have a look at this :
    http://howiclub6.wix.com/hopewinds1

    Your opinions would be greatly appreciated.

  2. #2
    Forum Member Terry's Avatar
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    Hi Phil and welcome to the forum;

    Love the picture and the group is a good idea. I used to go to a day group of similar demographic but it was shut due to lack of funding.

    Please feel free to ask questions or share things with us.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

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  3. #3
    Forum Member Barry52's Avatar
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    Hi Phil and welcome.

    I admire your aim to help others with neurological conditions. Many of the symptoms are common across different diseases and people living with a disability of this kind often require a support group. Technology has improved the quality of life for many, myself included with my speech app but unless you can afford it the cost is often prohibitive.

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

  4. #4
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    Thanks, Terry and Barry52,
    Great to have your replies and your support. I am working with club members to get research and services running to make some useful and affordable technology available to people like ourselves. I hope to have the outlines for the first couple of schemes in the next couple of weeks. As with everything connected with MND and similar conditions, time is short! Any advice gratefully received.
    Best wishes Phil

  5. #5
    Forum Member Terry's Avatar
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    Hi Hopewinds,

    What areas are you looking at?

    Post any specific subject in the Technology section.

    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 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.

  6. #6
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    Thanks, Terry

    Will do
    Phil

  7. #7
    Forum Member Terry's Avatar
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    I was kinder hoping that you was looking into robotic arms for use with eye gaze among other things.

    Good luck, 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.

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