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  • SueM
    replied
    Thank you Dave and Barry, I’ve emailed Miss Hall to say I would be interested.
    Best wishes Sue

    Leave a comment:


  • Barry52
    replied
    As promised here are the details of the upper arms orthosis project. Edith is the project leader and I suggest if you wish involvement then please get in touch with her.

    Upper Limb Orthosis Project:
    Co-designers wanted!
    Project Background
    We are looking for first hand input
    from people living with Motor Neuron
    Disease and healthcare
    professionals to contribute to our
    design project to develop a device to
    assist upper limb weakness and
    preserve independence.
    User voice and participation is key in
    the human centred design process
    and will define the device context and
    requirements. Through this approach
    this project aims to challenge the
    bulky, expensive and often ineffective
    market norm of orthoses for people
    living with MND.
    How you can help
    We are seeking participation from people living with MND and relevant
    healthcare professionals as co-designers at key project design stages
    including:
    - Consultations and questionnaires
    - Key movements, and features
    - Review of design specification
    - Direct feedback on designs and prototypes
    Co-Designers contributions will define the project trajectory and directly
    determine engineering design and decision making.
    Consultations and questionnaires will be adaptable to suit individual
    needs and schedules. No engineering experience is required – just a
    willingness to contribute experience!
    Interested?
    Please get in contact
    Name:
    Edith-Clare Hall (lead engineer)
    Email:
    [email protected]

    Leave a comment:


  • Beemer
    replied
    Originally posted by Barry52 View Post

    Hi Sue,

    I am a patient member of the Sheffield research group where this study is being undertaken and I watched a video presentation about it last Thursday. I will share some details and contacts once I receive them. I am normally subject to confidentiality rules but I understand that this project leader is looking to gain an understanding of the benefits to people with MND therefore needs to hold online interviews.

    Best wishes,
    Barry
    Hi Barry/Sue

    I have just received an email inviting me to help with the project, regarding the Upper Limb Orthosis project which is headed by the University of Sheffield.
    The email was from Miss Edith-Clare Hall [email protected] .ac.uk

    Barry, I have not seen the presentation video.

    Dave

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  • SueM
    replied
    Barry52 thank you that’s really helpful
    Best wishes Sue

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  • Barry52
    replied
    Originally posted by SueM View Post
    Beemer the upper limb support research sounds really interesting, who is doing this please?
    Hi Sue,

    I am a patient member of the Sheffield research group where this study is being undertaken and I watched a video presentation about it last Thursday. I will share some details and contacts once I receive them. I am normally subject to confidentiality rules but I understand that this project leader is looking to gain an understanding of the benefits to people with MND therefore needs to hold online interviews.

    Best wishes,
    Barry

    Leave a comment:


  • SueM
    replied
    Originally posted by Beemer View Post
    I was not asked why I pulled out of Commend, but I would of let them know if asked.
    I have been asked if I am interested in assisting with research into upper limb support, something that I am really interested in. No idea yet when or if it will happen with the current Covid restrictions.
    Beemer the upper limb support research sounds really interesting, who is doing this please?

    Leave a comment:


  • Beemer
    replied
    I was not asked why I pulled out of Commend, but I would of let them know if asked.
    I have been asked if I am interested in assisting with research into upper limb support, something that I am really interested in. No idea yet when or if it will happen with the current Covid restrictions.

    Leave a comment:


  • billy106
    replied
    Hi Beemer Ive done a few of these, not anymore .just my opinion . A waste of valuable time.

    Leave a comment:


  • Barry52
    replied
    Hi Beemer,

    I’m sorry to hear that this trial has caused you distress. As Ellie has said the administers of the project would appreciate feedback so they can make adjustments.

    Best wishes,
    Barry

    Leave a comment:


  • Ellie
    replied
    Originally posted by Beemer View Post
    ... the process upset me, and I did not want that.
    Who would??!! You did the right thing - living with an MND is upsetting enough without it being added to.

    Did you give feedback or were you asked as to why you pulled out?

    Love Ellie.

    Leave a comment:


  • Beemer
    replied
    I have just opted out after just 5 weeks,
    I found the whole thing quite depressing, being constantly asked how did that make you feel, type questions.
    The psychologist was a very nice lady, but I did not want to keep thinking about how life has changed so dramatically for me this year.
    Maybe I did not give it a chance, but the process upset me, and I did not want that.

    Leave a comment:


  • Madge
    replied
    Hi Beemer

    i have volunteered for this x

    Leave a comment:


  • matthew55
    replied
    People making money out of people who can't fight back. Sorry but I have a low opinion of so called do gooders. x

    Leave a comment:


  • Doug Carpenter
    replied
    Hi Matthew

    Here's a link:

    https://www.ucl.ac.uk/psychiatry/res...ojects/commend

    Doug

    Leave a comment:


  • matthew55
    replied
    Thanks Barry, I forgot to ask last time but not the next thanks to you 🤗

    Leave a comment:

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