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Thread: Mum's just been diagnosed

  1. #11
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    Hi Ellie

    Thanks for your message, I'll be honest and I don't know if Mum is also having a EMG as well as the NCS, but........ I did take the call yesterday when I was at Mum's, it was a lady from the EMG team who was booking the appointment, but I will check as well - thanks

    From someone who's unsure about the process, Would I be correct in saying that you need both the EMG as well as the NCS ?

    Also - thanks for the advice for the calorie intake, I will have a chat about Mum about a feeding tube, think that will be a difficult conversation to have, I think once we have the home visits, the specialists may be able to give her that advice? Mum might take it better from them rather than me,

    Take care Ellie

    Andy

  2. #12
    Forum Member Ellie's Avatar
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    Yes Andy, both NCS & EMG are done as part of the diagnosis process.

    And you're spot on about having a Healthcare Professional do the hard conversations

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

  3. #13
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    Quote Originally Posted by Terry View Post
    Hi Andy;

    You could also get her doctor to consider prescribing some drinks like Fortisip, they have a balanced diet and could be useful if she doesn't feel like making things.

    She should have a dietitian onboard soon that can help and they is a booklet on the Mnda website about foods that are easier to eat and what to eat.

    She should also be prescribed riluzole which is the only proved drug to slow things down a little.

    Love Terry


    Hi Terry

    Spoke with the GP today, and they have prescribed Mum Fresubin Protein Energy Drink

    Thanks for giving me the nudge to contact the GP

    Andy

  4. #14
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    All,

    Thanks for all your responses, I have a bit of a strange question that I'm hoping someone may be able to clarify,

    I was speaking to someone about Mum's recent diagnosis with MND, I'm not really close to this person, but they mentioned they have a family member who's been diagnosed with MND, alzheimer's and dementia, now I'm totally unsure if this is possible, I don't want to think this person was being disrespectful and trying to compete?? Sorry if this is non relevant question, but was wondering if anyone has any viewpoints if someone can be so unfortunate to have all 3 of these conditions?

    Thanks

    Andy

  5. #15
    Forum Member Lynne K's Avatar
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    Hi Andy. The only thing that I do know because of reading about genes and my consultant mentioning what I'm about to type: the genes found that relate to MND are also a group seen with dementia patients genes. I read that some are unfortunate enough to suffer from both. But most MND sufferers don't. I don't know anyone personally who has the two conditions. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  6. #16
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    Hi Lynne, thanks for your message. I've been doing some digging on the internet, seen a couple of articles linking dementia with MND, but not found anything about having MND, dementia AND alzheimer's

    Take care
    Andy

  7. #17
    Forum Member Terry's Avatar
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    Hi Andy,

    Good to hear that the doctor has prescribed them straight away. They can be quite filling but I find them handy when out and at home when I am alone for a while. I also keep one by my bed.

    Mnd can affect the frontal lobe area of the brain and can cause emotional problems which is quite common. It can also cause aggressiveness and or dementia however these are not common.

    I don't think that alzheimers is connected though.

    I could be wrong.

    Love Terry

  8. #18
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    Thanks Terry
    Take care
    Andy

  9. #19
    Forum Member AndyB's Avatar
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    Hi Andy
    At the first local MNDA meeting that I went to back in 2016 there was a patient with MND and dementia/Alzheimer’s. His wife had been told that it is quite rare for people to have both but it does occasionally occur.

    Andy

  10. #20
    Forum Member Ellie's Avatar
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    Hi Andy,

    A significant percentage of people with ALS/MND also develop FTD (Frontotemporal Dementia) - I wonder if that is what this person has?

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

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