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    Good morning Barry I had a look at the...

    Good morning Barry

    I had a look at the programme as we bade Sally, the Chief Executive of the Motor Neurone Disease Association, farewell as she left the trustee meeting on Saturday 23rd November...
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    MND International symposium

    I assume all that are here know about this and are watching if they so wish?

    https://symposium.mndassociation.org/symposium-live/
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    Hi Ellie In fact, I was looking at my test...

    Hi Ellie



    In fact, I was looking at my test results online rather than on a printed page and it only gave the two results I quoted in my original post.

    Is the Se Thyroxine T4 test additional...
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    Thyroid issues linked to MND?

    Does anybody else have thyroid issues that are linked to motor neurone disease or is it just something entirely separate?

    The GP surgery ran me through the test mill earlier in the month and...
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    Good afternoon panniertank I can only second...

    Good afternoon panniertank

    I can only second what Sheila and Dina have said, and perhaps add that you could ask your GP to see if there is anybody who could talk to you about your panicking and...
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    Hi Andy Thank you for your good wishes ...

    Hi Andy

    Thank you for your good wishes



    Err - picture tells a thousand words, and all that stuff

    There is a picture in this article, which may help your understanding?
  7. Hi Annjac You seem to have posted at the tag...

    Hi Annjac

    You seem to have posted at the tag end of a thread about mobile phone access, which as I said above, is a bit ironic really as it says something about the usability of the forum.

    Can...
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    Good morning Panniertank I am pleased to see...

    Good morning Panniertank

    I am pleased to see you looking more positive - I think I would be a much worse place if it were not for the fact that I presently live with my wife and daughter who are...
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    Hi Ellie Thank you again – perceptive as ever...

    Hi Ellie

    Thank you again – perceptive as ever



    Interesting you should mention toxicity - I wearing my rose tinted spectacles assumed that keeping the stuff in my body for longer would mean...
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    Hi Andy I guess you do have to believe him - I...

    Hi Andy

    I guess you do have to believe him - I certainly have no other options than to believe what they say and comments from other people who look at my hand damage for example, and say that I...
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    Good morning Ellie Thank you re theracumin - I...

    Good morning Ellie

    Thank you re theracumin - I have now heard from the supplier in the US uses exactly the same that it does not matter whether it is taken with food or without



    Yes indeed I...
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    Good morning Andy Thanks for coming back and...

    Good morning Andy

    Thanks for coming back and letting us know, very pleased to hear, as Terry says that you will not be becoming a full member of the team.

    I hope you can get your spinal issue...
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    Good morning I saw this coming through on the...

    Good morning

    I saw this coming through on the MND research blog and so contacted my local team at Kings.

    They will refer me, although unfortunately there is no very close participating centre -...
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    Good morning Mickey, I am sorry you have had...

    Good morning Mickey,

    I am sorry you have had to join this rather sad crew - but you have come to the right place for some good advice.

    I too went through the phase of being told I had some sort...
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    Good morning Ellie and Barry Thank you for the...

    Good morning Ellie and Barry

    Thank you for the information and the update.

    At the moment I take it in the morning, along with my riluzole which I also take with my early morning substantial...
  16. Good to hear Ben No doubt we will get updated...

    Good to hear Ben

    No doubt we will get updated the next time we "meet"
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    What a lovely post - and are able to move on. ...

    What a lovely post - and are able to move on.

    And I still have conversations with a person I knew very well who died over ten years ago and still have the occasional cry.

    Interesting that you...
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    Hello all, I was seeing something somewhere...

    Hello all,

    I was seeing something somewhere about having to take curcumin with some sort of fat to make it absorb properly - is that a true book?

    Also having a dig around in a break from work...
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    Good evening Yes, sorry Ellie I know you...

    Good evening

    Yes, sorry Ellie I know you communicating this way - I think you are a wonder to keep going in the way that you are.

    My alternative mask arrived in the post this morning so I will...
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    Hi Ellie Okay - Thanks again So we have…… ...

    Hi Ellie

    Okay - Thanks again

    So we have……

    Pulmonary function tests (PFTs)
    Forced vital capacity, slow vital capacity, or inspiratory vital capacity (FVC/SVC)
    Maximal inspiratory pressure...
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    Good afternoon Ellie As I have just said...

    Good afternoon Ellie



    As I have just said to Dina I got my Nippy when having a base line test and sleep apnoea was diagnosed.

    As to the other alphabet soup. I am afraid I do not recognise...
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    Hi Dina As far as I know not - this was...

    Hi Dina



    As far as I know not - this was picked up for me when my neurologist wanted a based test of how my breathing was so that subsequent tests which show when it was deteriorating.
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    Hi Dina That is quite right but actually...

    Hi Dina



    That is quite right but actually in my case as I am practising for when my lungs do not work properly - at the moment, the diagnosis is sleep apnoea found when my neurologist was...
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    Good morning Andy I am actually in central...

    Good morning Andy

    I am actually in central south London, but am looking to move south to get a place which will accommodate me with a wheelchair if that is indeed the way I go, which is the...
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    Hi Ellie, Thank you for calling me macho - I...

    Hi Ellie,

    Thank you for calling me macho - I will pass that on to the family and see what they think!

    And Dina - I do not think the family think I am stoic either, since I occasionally throw my...
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