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Thread: Psychological Flexibility in ALS Patients

  1. #1

    Psychological Flexibility in ALS Patients

    Greetings all,

    My wife was diagnosed with Motor Neurone Disease (Amyotrophic Lateral Sclerosis) in early 2014 and, since January 2015, I have been caring for her on a full-time basis. In addition, I am also a student researcher in the field of psychology at the University of New England in New South Wales, Australia. I am passionate about improving our understanding of the role psychological factors play in people with MND / ALS. I am currently conducting research in this area and I would like to invite the person you are caring for to participate. Participation involves completing some online surveys that take about 15-20 minutes. If you think the person you care for might like to get involved, please find more details attached / below (including a link to the participation page).

    Thank you for taking the time to consider my request.

    Click this link to go directly to the study...

  2. #2
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012

    Important note.

    “The survey questions may cause psychological or emotional stress.”

    Please be aware this survey asks many difficult questions, including; prolonging or not prolonging your own life; your feeling towards loved ones; multiple quality of life questions.

    If you are anyway fragile atm, think before you do this survey please. You may be faced with issues you have yet to think about.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  3. #3
    Hello All,

    Please be advised that we are continuing to recruit participants for this study until late August 2017. All you have to do to participate is complete the online survey (takes around 15 minutes) by clicking on the link in the post at the start of this thread.

    Thank you for your consideration.

    James Pearlman

  4. #4
    Hello All,

    Recruiting for this study will be finalised over the coming weeks. If you wish to participate, please read the attachment and follow the link. Participation involves completing an online survey that takes around 15 minutes.

    Thanks again for considering this request.


    James Pearlman

  5. #5
    Here's the reference to the study findings: Psychological flexibility and attitudes toward evidence-based interventions by amyotrophic lateral sclerosis patients:
    I'm trying to contribute to the Neurology course by Anja Mehnert and help with an essay collection and research publications on Alleviation of psychological distress in patients with ALS. If someone has any materials on the topic, please contact me directly. Thank you.
    Last edited by TerryLewis; 21st January 2020 at 09:17. Reason: reference

  6. #6
    Forum Member Streetwise's Avatar
    Join Date
    Dec 2016
    If you need information on emotional lability you should go to the the als association in the USA try the forum there and try mnd forums worldwide read what carers have said and what sufferers think apart from that there is just very dry data

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