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Thread: Supplements

  1. #11
    Forum Member Marigold's Avatar
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    Hi Everyone,
    I saw prof Shaw yesterday for an review and asked her directly about supps.
    I already guessed what her answer would be but just wanted to get it from the 'horse's mouth' as it were! (no offence meant there)
    She said there was no scientific evidence of any benefit except if you have been found to have a deficiency. I was found to be deficient in Folic acid so this was prescribed.)
    BUT she didn't say don't take any and I was listening carefully.
    So I will carry on adding slowly to my little list.
    At best I need to feel like I'm being positive and proactive and beyond that - who knows!

    Is anyone else STARVING all the time?
    I seem to have gone right off sweet stuff and believe me, I always loved it. Now I'm just desperate for my next meal...
    Not looking good for the weight management I fear.

    Marigold

  2. #12
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    Hi Marigold. This is standard advice from the medical profession. They dont believe in supps. But aids is treated with around 100 compounds. Some of them are supps. So, if his condition is ever to be treated, its likely that it will have compounds found here on earth. Someone one day will find a treatment. And it will be compounds that are available,

    Do your own research, go slowly and add one thing at a time.

    Listen to your body. Its telling you that it needs fuel. So give it. Dont worry about the extra pounds. You may have weight loss later and the last thing you need is to feel weak. Food is medicine.

  3. #13
    Forum Member Marigold's Avatar
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    Thanks Ali_Chris
    Very reassuring advice. I guess we are all doing our own research. I will persevere...

    Is it lunchtime yet???
    M

  4. #14
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    Quote Originally Posted by Marigold View Post

    Is it lunchtime yet???
    M
    It is if you say it is

  5. #15
    Forum Member Ellie's Avatar
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    Yes Marigold, Chris is right - don't worry about putting on a bit of weight, but as your progression is on the slow side, probably best not to go overboard!!

    I wonder if your increased appetite is attributable to any medicine or supplement you've started taking? It can be a side effect of some.

    It's worth mentioning to your GP if you think your appetite has substantially changed.

    Good luck with the supplements!

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

  6. #16
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    Hi Everyone,
    I have been following this thread with interest because there is such a huge range of supplements and it's hard to know where to start. I am following a gluten free diet but I think my diet problems were unrelated to MND although I might be wrong.

    How strange about tastes changing and being hungry ! When I was first diagnosed I totally lost my appetite because of the stress! Now I am starving and I keep craving things I wouldnt normally eat like chips ! I too have gone off sweet things .. what's that all about ?

    Yes it's definitely lunchtime!
    Love Debbie x

  7. #17
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    There are a lot of similarities to our lists. Mine is long. The first short list I take every day. About 6 months after I was diagnosed I stumbled on a mention of the Brain Wellness Book, got a copy from Amazon, written by a US doctor and a dietician. They recommended most of these so I started taking immediately:

    COQ10
    Vitamin B Complex
    Chelated Zinc
    Chelated Manganese
    Alpha Lipoic Acid
    N-Acetyl Cysteine
    Calcium
    Magnesium
    Also I added Flaxseed Oil 1000mg and I take 2-4 capsules a day

    Over the following 6-12 months I then added the rest of the following to my intake, as a result of my own research. The following I divide roughly in half and so take each every other day rather than every day. There are a lot of antioxidants so I'm getting at least two or three different ones of them each day:

    Organic Turmeric
    Brewers Yeast Tablets (2-4)
    Green Tea Extract high strength
    Vitamin C slow release
    Cranberry Extract max strength
    Copper 2mg
    Red Clover 1000mg
    Trans Resveratrol 5000mg
    Pine Bark Extract
    Grape Seed Extract
    Olive Leaf Extract
    Burdock root
    Pycnogenol
    Pyrroloquinoline
    Vitamin D (winter months only)
    Lutein and Bilberry

    Vitamin K - MK7 (from fermented soya) tablet form - I take daily

    Also I believe in helping digestion/absorption so I also take, every other day:
    Aloe Vera capsule
    Milk Thistle tablet max strength
    Bio culture tablet, similar to having a live yoghurt really

    I have become a non meat eater in last 4 years. I don't eat much dairy either, just an occasional bit of cheese. This is to do with not wanting to eat meat, nothing to do with whether I think it is or isn't good for my health. I've decided not to eat 'anything I want' , but rather just eat what is generally considered to be a good average diet with lots of all the usual - whole grains, bit of oily fish, lots of veg, garlic, olive oil, bit of coconut oil for cooking. Not too much refined foods,dark chocolate, nuts, etc. Bit of cider vinegar on salads etc.

    My view is that a broad spectrum of supplements and a good diet, accumulated, can help, but that is just my belief. I also appreciate I can swallow all these and not everyone can. So was diagnosed 6 years ago.

  8. #18
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    Forgot to add Optimised Quercetin, which I take daily for about the last year!

  9. #19
    Forum Member Marigold's Avatar
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    Wow!
    Thanks for this Olivia,
    Lots for me to read about and research here...
    Debbie, we have our work cut out!!

  10. #20
    Forum Member Lynne K's Avatar
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    [QUOTE=Marigold;82179]Hi Everyone,
    I saw prof Shaw yesterday for an review and asked her directly about supps.
    I already guessed what her answer would be but just wanted to get it from the 'horse's mouth' as it were! (no offence meant there)
    She said there was no scientific evidence of any benefit except if you have been found to have a deficiency. I was found to be deficient in Folic acid so this was prescribed.)
    BUT she didn't say don't take any and I was listening carefully.
    So I will carry on adding slowly to my little list.
    At best I need to feel like I'm being positive and proactive and beyond that - who knows!

    Is anyone else STARVING all the time?
    I seem to have gone right off sweet stuff and believe me, I always loved it. Now I'm just desperate for my next meal...
    Not looking good for the weight management I fear.

    Marigold[/QUOTE
    Marigold, I too have gone off sweet stuff. Could it be caused by taking Riluzone do you think? I only ask because it's only since around when I started taking it that my tastes changed. Lynne

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