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Thread: Mum's just been diagnosed

  1. #1
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    Mum's just been diagnosed

    Hi Everyone,

    My Mum has just been diagnosed with MND, we both went to see the consultant yesterday to get the news. I don't think it's fully sunk in to be honest, although I guess in the back of my mind I was expecting this to be the diagnosis.

    My Mum is 73, I first noticed her speech was slurry around April 2017, so I took her to the doctor, they referred her to the hospital and they (at that stage) believed she may have suffered a minor stroke, although over the course of the last few months the speech has taken a downward swerve where I now struggle to understand maybe 1 in 5 words Mum's saying,

    She's also lost a considerable amount of weight and muscle loss.

    I did ask the consultant about timescales, he mentioned 3 to 5 years, but he did mention that would have been from the initial symptoms, so that would have been from April 2017 when I first noticed Mum's speech was slurry.

    Mum's been booked in for a Nerve Conduction test on the 17th October, I'm assuming this will determine the amount of muscle loss?

    Now I totally forgot to ask the consultant what variant of MND Mum has, I've obviously been reading various web articles and from what I can determine it could be either ALS or PBP, I was wondering if it's possible to have both variants? Obviously I will ask this next time I see the consultant.

    As well as the Nerve Conduction test, Mum will also be scheduled in for breathing and swallowing assessments, these dates are to be confirmed, followed up by a home visit to asses the living conditions, what diet is best. The consultant also mentioned about the possibility of moving Mum out of her current house - into a bungalow

    I just wanted to share where I am at the moment, I've read some of the post's on this forum and it seems it's all very supportive.

    Many Thanks

    Andy

  2. #2
    Forum Member Terry's Avatar
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    Hi Andy and welcome to the forum;

    Sorry to hear of your mum's diagnoses just a day ago. Hope your mum had some idea that she could have Mnd before hand.

    It can take a couple of months to sink in and move forward.

    They normally do the Nerve Conduction tests before diagnoses and that helps determine the type of Mnd as well as rule out other possibilities. I don't think that they determine muscle loss.

    I talk using a talking machine and others use a tablet computer and other low tech systems.

    It's impossible to tell how long people live with this disease but there are guide lines.

    It is also important to try to keep weight on as much as possible.

    Best wishes, 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.

  3. #3
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    Hi Terry

    Thanks for your message,

    I will try and make sure Mum does eat enough to keep her weight up, although as I don't live local I'm unable to keep my eye on her, but I will make sure her cupboards will be stored with all of her favourite foods,

    Also thanks for confirming the Nerve Conduction tests, I guess once that's completed we'll have more an idea on the challenges ahead.

    Take care Terry

    Andy

  4. #4
    Forum Member Terry's Avatar
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    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

  5. #5
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    Thanks Terry, Yeah the consultant mentioned riluzole, he also mentioned that if taking riluzole you also need to have monthly blood tests as well,

    Great idea about the doctor to prescribe some nutritional drinks, I'll make make I'll get this arranged - thanks.

    The consultant did mention as part of the home visits, once they take place a dietitian will also be engaged

    Thanks again Terry

    Andy

  6. #6
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    Hi Andy and welcome to the forum.
    It will take a while for you all to get your head around things . I hope your mum has got other family members , and friends nearby .

    The doctors always tell you what the guidelines say about the timescale but no one really knows. I said to mine how long is a piece of string , and he said exactly !

    Would your mum join the forum there are a lot of people on here that have helped me, and it makes you realise there is not only you going through this.

    She will soon get everybody in place to help such as OT, Speech therapist , Physio etc.


    Love Chris

  7. #7
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    Hi Chris

    Thanks for your message,

    My Auntie also lives with my Mum in the annex, so that is going to help going forward, I just hope it's not to much strain on my Auntie, she lost her husband (my Uncle) March last year, I know taking Mum to the hospital for other previous tests has bought back some memories. I'm about 100 miles (2 hours drive) away, but at the moment I'm working in the NW,England and Mum lives North Devon.

    Great idea to ask Mum about joining this forum, I'm done to Mum's again soon so I'll show her the forum and let her decide in her own time.

    Take care

    Andy

  8. #8
    Forum Member Barry52's Avatar
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    Hi Andy and welcome to the forum.

    I’m sorry to hear about your Mum and I hope she gets the MND support team in place soon. They will help her to manage the symptoms and ensure she has the correct equipment to make her safe. Falling is a high risk so encourage Mum to use a walker.

    Terry offers good advice about diet and since weight loss is a feature of MND the dietitians often suggest a high fat intake.

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

  9. #9
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    Thanks Barry.

    Mum did actually have a fall in town recently, really damaged her confidence, she has now got a walker. But she only really goes out once a week with her sister (in the car) to do the weekly shopping

    Take care Barry

    Andy

  10. #10
    Forum Member Ellie's Avatar
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    Welcome to the Forum Andy, sorry you've had to join it due to your mum's diagnosis.

    Although it won't seem like it , your mum's progression is relatively slow, especially given her age (I am not being mean, honestly!)

    If her diagnosis is ALS, it's Bulbar onset ALS. PBP often develops into ALS.

    I hope your mum is having an EMG in addition to the NCS?

    For now her priority should be taking in enough calories, safely, and to think about getting a feeding tube sooner rather than later, if that's what she wants. Losing weight isn't good for her.

    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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