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    #16
    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

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      #17
      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.

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

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          #19
          Wow!
          Thanks for this Olivia,
          Lots for me to read about and research here...
          Debbie, we have our work cut out!!

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            #20
            [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
            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.

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              #21
              A bump for this thread also as useful information for new arrivals and others.

              Add. An interesting Alsuntangled video report on the maybe ? Benefits of Curcumin.
              https://www.neals.org/for-people-wit...her-als-x-file
              Last edited by TIANDB; 16 August 2018, 16:22. Reason: ADD

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                #22
                Thanx TIANDB for the exhaustive n comprehensive list

                Have you or any others tried Deanna Protocol, (AAKG 18 gm daily plus other supplements )
                and if so, what was the experience

                BW

                Vivek

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