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Stage 2

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    My mum died of Altzimers but I lost her three years before her end. If someone close to you suffers from dementia you will know believe me. ☹️


      Fatigue is a part of MND and there are a few reasons for it, both physical and psychological. And rest doesn’t really fully recharge the body, that’s why we say to conserve energy for the enjoyable parts of the day or, if there’s an upcoming clinic appointment/visit to relatives, bank your energy to survive the day and take time to recover - energy budgeting

      If Stephen has apathy, lack of motivation, shows a lack of concern about others and lacks initiative, this could be down to sheer fatigue or it could be signs of FTD, which is why regular screening is carried out in most clinics (has he seen a Neuropsychologist or ever done psychological tests, questionnaires?) So, it can be hard to know the reason why someone may appear to have cognitive, executive or behavioural issues, without being tested… Often it's the person's family or friends who notice something's amiss before a formal diagnosis is given.

      FTD has notable differences to Alzheimer’s. It isn’t directly relatable to any particular Stage in that 1-5 sequence, and its presentation can be quite mild, particularly in the early or middle stages of ALS/MND. Yes, FTD occurs when parts of the brain shrinks - the frontal lobe and the temporal lobe control problem solving, spontaneity, memory, language, processing information, amongst others.

      Love Ellie.

      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


        His behaviour has definitely changed. He gets confused and upset easily almost childish. He has no problems being quite rude about people which can be so embarrassing. When I first brought this up with the doctor he wanted to arrange a mri scan but there's a long waiting list 1 1/2 years.
        he hasn't had any tests. Or seen the people you suggest.
        I have noticed some changes and our family come every few months have also noticed changes in him. He gets into a loop about where we are going, when we are going, what time we should leave and it goes on and on. He will start again the following day. It drives me mad. He just cant seem to help it.
        this is what makes me feel sure something is wrong not just mnd. I shall write what you have said down and try for more help.
        thanks Ellie
        you are wonderful xx