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The MND diary project: Investigating coping and resilience in people living with MND

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    The MND diary project: Investigating coping and resilience in people living with MND

    A diagnosis of MND can affect people’s lives in many ways. The aim of the MND diary project is to explore people’s experiences of coping or not coping with all the effects that a diagnosis of MND has within their lives. The investigators are investigating more than just the physical symptoms of the disease and want to find out what challenges diagnosis has brought to life both at work and at home. They would like to hear how people dealt with these challenges and what things or people either helped or did not help when dealing with the challenges and exploring how this may change over a period of 3 months.

    How people cope with challenges can be a very individual thing and what works for one person may not work for someone else. By listening to people’s individual experiences, the study team are hoping to build up a picture of the similarities and differences in the ways people cope with MND in their lives. The aim is to use these results to help inform the future healthcare for people living with MND.

    What does taking part involve?

    Taking part will involve two interviews with the researcher 3 months apart and, if you would like, keeping a diary for the 3 months between the interviews.

    The research has been designed so that participation can take place using your choice of communication method. This means that the “interviews” could be a 45-minute video/phone call or a series of messages or emails between yourself and the researcher. How you keep the diary would also be up to you. It could be typed/spoken onto your computer or phone or it could be a photo diary or a traditional pen and paper diary.

    Who can take part?
    • People living with MND - People may have a diagnosis of any form of motor neurone disease but those diagnosed with frontotemporal dementia are not being asked to take part.
    • Over 18 years old
    • Living in the United Kingdom

    How can I take part?

    To express an interest in taking part or if you would like to find out more contact Nicola Glennie, Postgraduate researcher at the University of Stirling: [email protected] or 01786 466385. You can also find out more information on the project blog or on the MND Association website: https://www.mndassociation.org/research/get-involved-in-research/take-part-in-research/the-mnd-diary-project/

    Study end date: June 2022
    Our working hours are Monday to Friday 8:30am until 5pm

    #2
    Or they could get a proper job 😉😄
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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      #3

      Originally posted by matthew55 View Post
      Or they could get a proper job
      Not feeling particularly Zen today then 😏😍😘
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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        #4
        Researchers always get my blood up.
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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