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  • denise
    replied
    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

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  • Ellie
    replied
    denise
    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.





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  • matthew55
    replied
    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. ☹️

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  • denise
    replied
    Thanks for that. How do they do a frontotemporal diagnosis? When I asked about dementia he was sent for blood tests to show if it was hereditary but we haven't had results yet.

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  • Barry52
    replied
    Originally posted by denise View Post
    Just reading what parts of the body have been impacted on and add my husband which is mainly his hands. Another thing would you say that tiredness would also cause problems with thinking, problem solving? Sometimes I feel im having conversations with him but im not sure he comprehends what I'm saying.
    Hi Denise,

    Cognitive impairment is quite common in pwmnd. Don’t assume it’s dementia unless the diagnosis also includes frontotemporal.

    Best wishes,
    Barry

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  • matthew55
    replied
    What I get is not tiredness it's just a lack of energy. This is a classic symptom sadly. A walk to the shops now takes 30 rather than 10 minutes and when I get back I have to sit down for an hour. Happy Days 😊x

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  • denise
    replied
    Just reading what parts of the body have been impacted on and add my husband which is mainly his hands and arms. His speech and swallowing a bit but not too bad. All of you it is different. It truly is a weird disease. Another thing that isnt mentioned is the tiredness. Stephen finds not being able to use his hands so upsetting but the tiredness seems to be the biggest gripe. I suppose that must come from stage 1? Do i take it that the tiredness comes from the brain? Another thing would you say that tiredness would also cause problems with thinking, problem solving? Sometimes I feel im having conversations with him but im not sure he comprehends what I'm saying. I've always thought dementia was involved but I just don't know what is going on.

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  • denise
    replied
    I thought that's what it was but wasn't sure. Thanks everyone.

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  • Nettie
    replied
    I’m almost the same as Matthew but have limited movement in left leg and seems to starting in left arm now x

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  • matthew55
    replied
    I'm a classic Bulbar. My lower jaw has moved, my teeth are moving and I am practically mute. My swallow is working but I cannot eat solid foods anymore. Apart from that I'm very healthy. 😊x

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  • Ellie
    replied
    If the Bulbar Region is involved in MND, that means swallowing, chewing, speech, jaw movements etc are usually affected to some degree.

    The bulbar region itself is in the brain.

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  • denise
    replied
    Can someone explain bulbar?

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  • Ellie
    replied
    I found this slide which be useful:

    5 Stages of ALS (2).png

    And I know people will ask, so what's Stage 5? Stage 5 is, unfortunately, death.

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  • Shaun
    replied
    Thanks Ellie

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  • Ellie
    replied
    It's more regions than body parts Shaun. So Bulbar, Upper Limbs and Lower Limbs are 3 regions - Stage 1 is when one region is involved and so on.

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