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Thread: Could psychological therapy help people with MND?

  1. #11
    I tried to complete the survey but it wouldn't accept my age!! So I couldn't get further than the front page-sorry but I do definitely think that psychological support is so so important.

  2. #12
    Forum Member
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    Dec 2013
    Quote Originally Posted by Bakerchick View Post
    Would it be a talking therapy - I can no longer talk. BC
    very good point. that's what I mean about tailored. They could do it if you had technology to express your thoughts.

  3. #13
    Forum Administrator Admin_MND's Avatar
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    Oct 2015
    Quote Originally Posted by Kernowcluck View Post
    I tried to complete the survey but it wouldn't accept my age!! So I couldn't get further than the front page-sorry but I do definitely think that psychological support is so so important.
    Hello Kernowcluck,

    The only age requirement for the survey is that you're 18+. If the website is still not working for you and you wish to complete it, please contact or telephone 0151 794 5102. Appologies for the inconvenience.

    Thank you

  4. #14
    Forum Member Sueb's Avatar
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    Aug 2014
    Steve has completed the survey. Sometimes it is good to others that are not close to you about your feelings.

  5. #15
    Forum Member Barry52's Avatar
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    Mar 2012
    Newark on Trent
    Quote Originally Posted by njm View Post
    Absolutely agree with Barry52. I have a few comments on this as I am on a bit of familiar turf here. I used to be a Professor of Clinical and Health Psychology and worked with people with chronic pain and other chronic conditions. I would encourage investing in researching and developing a model of psychological therapy/counselling tailored to MND. It presents such unique emotional and psychological challenges to the MND patient and their families that a generic counsellor might not grasp the complexity of the inner turmoil this diagnosis evokes. There are elements of depression, facing end of life and mortality, often premature death, disability issues, pain issues, emotional dyscontrol and more. It sets in motion a very complicated set of thoughts and feelings.
    So I absolutely endorse the provision of psychological help. But even more I encourage research into the experience of diagnosis, adapting to that, and the process of living with MND. A good research project could surface what people do here and to build that into the approach and model of MND counselling.
    An parallel example is HIV. When people get tested for HIV there is a mandatory pre- and post-test counselling. The latter is vitally important. MND is a much more devastating diagnosis. as with others, my diagnostic experience was appalling. My first neurologist gave me the diagnosis and as I sat paralysed in utter emotional shock he virtually pushed me out the room. My second opinion neuro gave me a confirmation of diagnosis then made some flippant comments and ushered me out the room, avoiding eye-contact throughout. . Thank God I eventually got to Prof. Chris Shaw of Kings who is an exemplar of a a neurologist who makes wonderful contact with the person behind the diagnosis.
    But aside from the neurologists, I do endorse the provision of counselling beyond the diagnosis stage.

    As you can see I have strong views on this because it is so close to home.


    Valuable comments Charles and I do hope they are captured by the researchers.

    Iím going to do this even if it kills me!

  6. #16
    Survey completed. Psychological support should be linked to diagnosis. I felt very alone when I was diagnosed.


  7. #17
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Very true Crystal;

    When being diagnosed and especially directly after being informed there is a great need for help. A good reliable contact that takes you away for a cup of tea.

    Sometimes but I believe rarely this happens, maybe by a Mnda branch member.

    The NHS should provide this. We had a baby that had a defect, the specialist doctor that did operate six months later on him visited us the next day after the birth. What comfort that gave us both.

    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.

  8. #18
    Hi Terry
    I was with my sister when I had my EMG and the consultant said you have MND, it's terminal and Cheerio! My sister and I went to pieces on Denmark Hill outside the hospital. It was the most harrowing event of my life-how can someone be so matter of fact about a life changing event? As you say about your son it is important to be reassured immediately.

    Crystal xx

  9. #19
    Forum Administrator Admin_MND's Avatar
    Join Date
    Oct 2015
    Hello All,

    This survey is close to ending but there is still time to help contribute to the findings.

    We are looking for people with MND to participate in a one off questionnaire study about your mood, thoughts and MND symptoms. It should take approximately 30 minutes to complete.

    The results will help us to understand more about the emotional experience of MND and whether psychological therapy could help people with MND to cope with anxiety or depression.

    How can you take part?
    Click here for more details about the study and to take part after reading the information

    Who can you contact for further information?
    If you have any questions about the study, or you would like further information, please contact the researcher Rachel Dodd (email:; telephone 0151 794 5102)

    Thank you very much for taking the time to read this information.

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