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Thread: Advance Decision to Refuse Treatment - End of Life Choices - may be distressing

  1. #21
    Forum Member Gillette's Avatar
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    Hi Ellie,

    I just wanted to say that I shall be picking up on this thread shortly. However, for what's left of this week, I shall be making memories with my grandsons. We lost a lot of this week because of me being in hospital, amongst other things.
    Dina


    Trying to keep positive, but not always managing.

  2. #22
    Forum Member Gillette's Avatar
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    Hi Ellie, you mentioned FTD in one of your posts. I wonder if you would tell me what it is, please? Thanks.

  3. #23
    Forum Member Ellie's Avatar
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    Hi Dina,

    FTD is FrontoTemporal Dementia - oh yes, MND is the gift which keeps on giving...

    This is from the MNDA main website, I thought it might be easier for you if I copied and pasted info, rather than give links. It's aimed at Healthcare Professionals, but I think the info for the general population is lacking.

    I know my MND Clinic may have a different opinion on the % of people affected by FTD, particularly in the latter stages of the disease, as in the incidence is higher, but it's also important to say that how one is affected by FTD varies enormously.

    Frontotemporal Dementia
    A small but significant minority of people experience severe changes that will be diagnosed as frontotemporal dementia (FTD). These changes are most often in behaviour and executive skills, but sometimes they are in language or conceptual understanding.

    Executive function
    In those with MND affected by cognitive change, the most prominent impairment is in executive functions. This may lead to problems with:

    • setting and achieving goals
    • planning and problem solving
    • responding to new situations
    • shifting attention or dividing attention between different tasks
    • initiating and inhibiting responses.

    Language
    Some people also show changes in their ability to understand and produce spoken or written language. Some researchers have questioned whether language changes may be at least as common as executive function changes.
    Behaviour

    Behavioural impairment is a recognised feature of MND and problems may include socially inappropriate behaviour, disinhibited comments, impulsivity, apathy and inertia, loss of sympathy and empathy for others, and perseverative, rigid, stereotyped or compulsive behaviour. People who are cognitively normal can have profound behavioural abnormalities.
    Social cognition

    Understanding and interpreting other people’s thoughts/beliefs/feelings. Changes in social cognition can be challenging for carers/family of people with MND, as well as for health and social care professionals.

    Unaffected aspects of cognition


    Memory (acquiring, retaining and retrieving new information) is not usually affected, although some people may experience problems with their memory as a secondary consequence of executive dysfunction, along with problems with attention.
    Problems with perception (dealing with the information gathered by the five senses) are rarely seen.

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

  4. #24
    Forum Member Gillette's Avatar
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    Thanks for the clarification, Ellie.

    I am hoping my partner will bring my ipad in tomorrow so that I can start looking at ADRT etc in more detail.

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