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Thread: New member.

  1. #11
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    Jul 2018
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    Hi Olivia,

    Welcome! It sounds like you have reached a plateau regarding your progression. Do you have any visible atrophy in your legs?

    Richard

  2. #12
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    Quote Originally Posted by Marigold View Post
    Hi Olivia,
    Welcome to the forum.
    Looking forward to hearing all your top tips - particularly about the supplements.
    I love your positive outlook, its inspiring me already!
    Marigold
    Thank you Marigold.

    Being positive is taking back control. That is key, I feel, to getting the better of this illness, it takes time and it is not about being at war with yourself, because ultimately it is our own bodies letting us down, whatever the cause ends up being, but I like the idea of the rest of me getting the upper hand in this battle for me! Fight smart Also like many others here, I won't be defined by mnd. I fight the corner for those with disability, but also lots of other things in the world too.

    I will put my supplements on that thread soon.

  3. #13
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    Quote Originally Posted by Richard2525 View Post
    Hi Olivia,

    Welcome! It sounds like you have reached a plateau regarding your progression. Do you have any visible atrophy in your legs?

    Richard
    Hi Richard. My lower legs are a bit thinner, though always were very 'slim' anyway, but they are not wasting. Foot doesn't work much, affects balance and strength/standing, so I always have to lean on something or hold something. But, this never changes, in fact some days my balance is much better than others, but not getting any worse after those first 6 months or so after diagnosis. People can plateau. I'd like to see progress on understanding the chemistry of this degenerative disease, but I am also interested in the randomness of who and how it manifests. I suspect there is a common ground that is yet to be found.

  4. #14
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    Jul 2018
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    Hi Olivia,

    So would you say it's your weakened feet that give you problems walking? No leg pain then?

    I have intermittent pain in my right thigh that makes it hard for me to put weight on my leg.

    Richard

  5. #15
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    Quote Originally Posted by Richard2525 View Post
    Hi Olivia,

    So would you say it's your weakened feet that give you problems walking? No leg pain then?

    I have intermittent pain in my right thigh that makes it hard for me to put weight on my leg.

    Richard
    Generally Richard my feet. But if I tried to stand or walk unaided, then the power is not there from my spine down to my feet. Terrible balance!I don't get much pain in my upper legs at all. Bit of sciatica. But... the tops of my feet, toes, heels are numb or feel like I have permanent nettle stings, and other various numb patches here and there on legs, some permanent, some come and go. This is pretty much it.

  6. #16
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    May 2017
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    Hi Olivia, my story is very similar to yours. First symptoms nearly 4 yrs ago, right foot drop, leg became weaker with muscle wastage, left leg went a bit different with muscle wastage then finally foot drop. I'm still walking with two walking sticks but it is a balancing act though i can manage 100mtrs. Still no symptoms in upper body though i do get some cramps in stomach/abdomen but usually only after exertion. I try to practice a diet with plenty of healthy fats (i use a lot of coconut oil) and all natural products, some supplements but not sold on them. Your last paragraph reaffirms that i must stop 'looking' for signs of the disease in my upper body. Thank you for your post, Mark

  7. #17
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    Quote Originally Posted by Maverick View Post
    Hi Olivia, my story is very similar to yours. First symptoms nearly 4 yrs ago, right foot drop, leg became weaker with muscle wastage, left leg went a bit different with muscle wastage then finally foot drop. I'm still walking with two walking sticks but it is a balancing act though i can manage 100mtrs. Still no symptoms in upper body though i do get some cramps in stomach/abdomen but usually only after exertion. I try to practice a diet with plenty of healthy fats (i use a lot of coconut oil) and all natural products, some supplements but not sold on them. Your last paragraph reaffirms that i must stop 'looking' for signs of the disease in my upper body. Thank you for your post, Mark
    Hi Mark.
    I do take a lot of supplements, mainly over last 4-5 years and I don't seem to change or worsen and honestly don't believe I will. I think all the antioxidants help, but I think it is just one tool, along with a positive outlook, a belief in the power of our own mind/defiance, a bit of luck, and yes, not to dwell on our own body waiting for the next thing to fail. Coconut oil is a good thing to take. Keep doing what you are doing and we can take this thing on and give it a real run for its money
    Best wishes to you.

  8. #18
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    Jul 2018
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    Hi Mark and Olivia,

    Mark, where do you get your coconut oil and how much do you take a day?

    Olivia, what are the main/core supplements and antioxidants you take each day?

    Thanks,
    Richard

  9. #19
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    May 2017
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    Hi Richard,

    I'm in Australia and I was getting it online from Banaban however they've gone into liquidation since my last order so will be looking for a new supplier. I take 9 tbs p/day. I was taking quite a number of supplements but wasn't sure if i was just wasting my money so stopped for 2 months and i've deteriorated further and am still not sure if it's anything to do with not having supplements but intend to start taking them all again. Here's my p/day list;
    Coconut oil 9 tbsp
    Magnesium Chloride 500mg
    Broad sprectum probiotic x2
    Docosahexaenoic acid (dha) 1000ml
    Lipoic acid 400mg
    Grape seed extract 150mg
    Vitamin C powder 8-16gm
    Vit. B Q10 200mg
    Glutathione 500mg
    Methylcobalamine (b12) 2mg
    Ubiquinol CoQ10 450mg

    I intend to add 20mg p/day of PQQ (pyrroloquinoline quinone).

    Good luck with everything mate

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