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Type: Posts; User: Olivia H

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  1. Thread: Ibudilast

    by Olivia H
    Replies
    19
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    2,142

    Hi Andy and Dina Yes they are very good points,...

    Hi Andy and Dina
    Yes they are very good points, how can we know what impact something is, or is not having, because we are all so different. I sometimes wonder if there are lots of subtle variants...
  2. Thread: Ibudilast

    by Olivia H
    Replies
    19
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    2,142

    Thanks Jerry. The nausea must be awful, but do...

    Thanks Jerry. The nausea must be awful, but do you feel the medication itself has slowed your condition or improved things for you?
    Regards
    Olivia
  3. Thread: Ibudilast

    by Olivia H
    Replies
    19
    Views
    2,142

    Thank you :)

    Thank you :)
  4. Thread: Ibudilast

    by Olivia H
    Replies
    19
    Views
    2,142

    Ibudilast

    This has only just come to my attention but others may know more about Ibudilast, a drug approved in Japan? Now at a stage 3 trial in USA I believe, and I've only discovered this by chance today!
  5. Thread: First visit

    by Olivia H
    Replies
    25
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    2,749

    Hi Polly There is a huge amount of support and...

    Hi Polly
    There is a huge amount of support and care for people on this forum. I wish you and your husband well. I completely empathise with those who feel the process just takes over their life. I...
  6. Replies
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    2,583

    Hello Moll Sorry to hear of your father's...

    Hello Moll
    Sorry to hear of your father's diagnosis and it can be overwhelming, but there is lots of advice and support here. Mnd can seem to move very rapidly, but can also then slow down. Like...
  7. Replies
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    5,270

    It would be great if there was a definitive...

    It would be great if there was a definitive diagnosis/test for such a serious condition, rather than the prolongued process that so many of us have to go through. I personally have lots of symptoms...
  8. Thread: bereavment

    by Olivia H
    Replies
    30
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    6,233

    So sorry to hear this. You are in my thoughts x

    So sorry to hear this. You are in my thoughts x
  9. Replies
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    5,164

    Sorry to hear you have been feeling so poorly...

    Sorry to hear you have been feeling so poorly Pink. It is the time of coughs and colds, which is so much harder when we also have mnd. Hope you get the help you need x
  10. Replies
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    7,660

    Sorry you are feeling down Pinkelle. I don't get...

    Sorry you are feeling down Pinkelle. I don't get down now, but I do find being on your own more is frustrating and that is the time it is the hardest. When I was first diagnosed 6 years ago I felt...
  11. Thread: Supplements

    by Olivia H
    Replies
    21
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    4,624

    Forgot to add Optimised Quercetin, which I take...

    Forgot to add Optimised Quercetin, which I take daily for about the last year!
  12. Thread: Supplements

    by Olivia H
    Replies
    21
    Views
    4,624

    There are a lot of similarities to our lists....

    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...
  13. Thread: New member.

    by Olivia H
    Replies
    18
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    2,943

    Hi Mark. I do take a lot of supplements, mainly...

    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...
  14. Thread: Weight gain

    by Olivia H
    Replies
    27
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    5,694

    I understand John what you say about taking your...

    I understand John what you say about taking your personality. You have to find a new and defiant one. I have. It is interesting that many diagnosed with this were generally very fit before, it is...
  15. Thread: New member.

    by Olivia H
    Replies
    18
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    2,943

    Generally Richard my feet. But if I tried to...

    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...
  16. Thread: New member.

    by Olivia H
    Replies
    18
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    2,943

    Hi Richard. My lower legs are a bit thinner,...

    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...
  17. Thread: New member.

    by Olivia H
    Replies
    18
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    2,943

    Thank you Marigold. Being positive is taking...

    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...
  18. Hi Paula. I am also new to the forum but not...

    Hi Paula.
    I am also new to the forum but not to mnd as it is 6 years and I can still do most things. Adapt, stay positive and you can live well.

    Best wishes.
  19. Thread: New member.

    by Olivia H
    Replies
    18
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    2,943

    Thank you :)

    Thank you :)
  20. Thread: New member.

    by Olivia H
    Replies
    18
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    2,943

    Yes I hope to Terry :)

    Yes I hope to Terry :)
  21. Thread: New member.

    by Olivia H
    Replies
    18
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    2,943

    Hiya Chris and thanks. I'm happy to do a list...

    Hiya Chris and thanks. I'm happy to do a list (long) of what I take. I'm refining it all the time but the core things are pretty consistent. Maybe there is a thread on supplements?
  22. Thread: New member.

    by Olivia H
    Replies
    18
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    2,943

    Hi Ellie and thank you. No not PLS....

    Hi Ellie and thank you.

    No not PLS. Mnd/ALS.... then monomelic ALS.... then just ALS... whatever form, it hasn't changed for 5 years or so now, which is positive.
  23. Thread: New member.

    by Olivia H
    Replies
    18
    Views
    2,943

    New member.

    Hello.
    I am Olivia and was diagnosed almost 6 years ago, in my early 40s, with mnd, after only about 3-4 months of symptoms which were leg cramps, falling when walking and shortly after, foot drop...
  24. Replies
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    971

    Travel Insurance

    I use World First. No problems, world wide or European. Have done so for 6 years.
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