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Thread: Ivan

  1. #1
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    Ivan

    Hello all,

    My wife has been diagnosed with this disease within the last 6 weeks. I have watched her over this last year go from nicely shaped woman to skin and bone, with now all the signs of mnd. We didn't know why she was losing weight.

    No doubt this has been asked by others but, as we are told there is nothing to be done about the disease, has anyone tried CBD? I know it's a contentious subject but, if it helps in anyway then it's worth it.

    Best wishes to all.
    Ivan Pearce

  2. #2
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    Hi Ivan,

    I'm so sorry to hear about your wife. We wouldn't wish another person to have to join us here . I've used CBD; for me I thought it helped a little with some symptoms, but had no impact on the progression of the disease. Others may be more enthusiastic.
    Best wishes, Kate

  3. #3
    Forum Member Ellie's Avatar
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    I'm so sorry about your wife's diagnosis, Ivan.

    It sounds like her first symptoms were swallowing difficulties?

    By all means try CBD oil but is the hope to relieve specific symptoms or for her to take it as an overall 'supplement' type product? There are various strengths available and they can range from a few quid per bottle to quite eye-watering prices! Do your research though and buy from reputable vendors/sites as it's not a regulated product, i.e. just because it says 5% on the label, doesn't mean it is. (BBC's "Trust Me, I'm a Doctor did a segment on CBD Oil if you want to watch it https://www.bbc.co.uk/programmes/m000dbdm )

    If you feel up to it, perhaps tell us how your wife is but she can help herself live a better quality of life by getting an appropriate amount of calories & fluids, through a feeding tube if necessary, managing her symptoms with meds or physical interventions and using non-invasive breathing assistance if needed.

    I hope you have good support yourself.

    Take care.

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

  4. #4
    Hi Ivan

    Welcome to the Forum. I was so sorry to read of your wife’s diagnosis.

    Based on recent personal experience, may I pick up on one aspect of it: weight loss.

    To an extent, loss of weight is inevitable in MND. As our neurones die, the muscles they served shrink and wither away. But it is well recognised that every attempt should be made to keep weight loss to a minimum.

    I have monitored my weight regularly for decades, so months ago it was easy to detect a significant downward trend. I contacted my MND clinic who moved very swiftly, calling me in for a consultation with a nutritionist as well as my usual doctors. MND is known as a “hungry” disease. Paradoxically, despite shrinking muscles, lack of mobility and loss of appetite, MND places high demands on our metabolism. Additional calories are needed.

    I was prescribed high calorie drinks, specially formulated to contain also essential vitamins and trace elements and designed to help patients at risk of medical malnutrition. A typical dose is three 125ml bottles a day. There are several makes, such as Ensure:

    https://ensure.com/nutrition-products

    Talk to your MND team about whether they might help your wife. Your GP can prescribe them.

    Good luck, stay safe!

    Doug

  5. #5
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    Hello Ellie,
    Many thanks for your advice. My wife Alison, is swallowing fine, the disease is not that bad yet, she has just wasted away which I understand is typical of MND. She is still up and moving around although some days she is very dizzy and stays in bed. As she is an ex midwife she understands the medical problems that she will have to face. I just hope I can help her.
    Best regards to all
    Ivan

  6. #6
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    Hello Kate,
    Thanks for your response. As Alison is ex medical background I doubt I could get her to try it anyway, but thought the question was worth asking.
    My heartfelt best wishes to you.
    Ivan

  7. #7
    Forum Member Ellie's Avatar
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    Hello Ivan, dizziness isn't usually directly associated with MND. I don't mean to pry but could it be due to medication side effects, inadequate nutrition, dehydration or an infection? I know your wife has medical knowledge so will know more culprits which can cause dizziness.

    Love Ellie.
    Last edited by Ellie; 11th May 2020 at 14:31.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  8. #8
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    Welcome Ivan. There’s a lot to get your head around in these early days but Please don’t hesitate to ask questions- there’s usually someone who will be able to give you an answer or point you in the right direction.

  9. #9
    Hi Ivan

    Just a quick update on high calorie nutritional drinks.

    The link I included in my 20.31 post yesterday is not appropriate. It goes to the US site. Here is the specific Ensure product I've been prescribed:

    https://www.nutridrinks.co.uk/ensure...iABEgI4PvD_BwE

    Thinking of you both.

    Doug

  10. #10
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    Quote Originally Posted by Doug Carpenter View Post
    Hi Ivan

    Welcome to the Forum. I was so sorry to read of your wife’s diagnosis.

    Based on recent personal experience, may I pick up on one aspect of it: weight loss.

    To an extent, loss of weight is inevitable in MND. As our neurones die, the muscles they served shrink and wither away. But it is well recognised that every attempt should be made to keep weight loss to a minimum.

    I have monitored my weight regularly for decades, so months ago it was easy to detect a significant downward trend. I contacted my MND clinic who moved very swiftly, calling me in for a consultation with a nutritionist as well as my usual doctors. MND is known as a “hungry” disease. Paradoxically, despite shrinking muscles, lack of mobility and loss of appetite, MND places high demands on our metabolism. Additional calories are needed.

    I was prescribed high calorie drinks, specially formulated to contain also essential vitamins and trace elements and designed to help patients at risk of medical malnutrition. A typical dose is three 125ml bottles a day. There are several makes, such as Ensure:

    https://ensure.com/nutrition-products

    Talk to your MND team about whether they might help your wife. Your GP can prescribe them.

    Good luck, stay safe!

    Doug
    Hello Ivan just to echo the comments by Doug I currently use https://www.fortisipdrink.co.uk/
    These are made available through my nutritionist on a repeat prescription

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