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  • nunhead_man
    replied
    I have to say I'm also guilty as charged in the sense that as my grip weakens I continue to try to do things I used to do where part of my brain tells me I've no longer got the ability to do it - luckily no major disasters so far but sure as eggs is eggs at some time I'm going to try and pick up a piece of expensive crystal above my head with the consequent loss of it as it slips through my fingers

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  • Barry52
    replied
    Okay ladies, guilty as found. I do use my walker everywhere but I have to let go occasionally and this is my downfall (probably wrong choice of word).

    Love and hugs,

    Barry x

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  • Ellie
    replied
    Well, I've given up scolding Barry for falling over He's just a scoundrel...

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  • miranda
    replied
    Originally posted by Barry52 View Post
    Hi Jacqui,

    I already take citalopram which has some benefits with lability and mood for me. I had hoped that nuedexta would improve my speech as reported by some users but the trade off affecting my balance was not worth it. Having said this, 3 years on and I fall over if I am not using my walker. I still count myself fortunate that I am able to adapt and use aids to to manage life with disabilities.

    I hope you find something to improve your situation .

    Best wishes,
    Barry
    I don’t believe it!!! Barry I can’t believe you are still breaking the “no falls allowed “ rule by not using your walker. You will no doubt get another telling off - only because we care and don’t like to see anybody take unnecessary risks. Please be careful.

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  • Barry52
    replied
    Hi Jacqui,

    I already take citalopram which has some benefits with lability and mood for me. I had hoped that nuedexta would improve my speech as reported by some users but the trade off affecting my balance was not worth it. Having said this, 3 years on and I fall over if I am not using my walker. I still count myself fortunate that I am able to adapt and use aids to to manage life with disabilities.

    I hope you find something to improve your situation .

    Best wishes,
    Barry

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  • Jacquij
    replied
    Hi Barry,

    Thanks very much for the info. Can I ask did you have it for lability of mood and if so did it have any affect on it.

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  • Barry52
    replied
    Hello Jacqui,

    Ellie is indeed correct to recall that I tried Nuedexta. I had a video call with Barbara Buyer who arranged supply of the generic form of the drug. A 2 month supply cost me approximately $175 after shipping and import duty. I took the drug for around 2 weeks but I found it was affecting my balance so I stopped taking it and put it down to an expensive mistake. This happened around 3 years ago and my consultant was aware.

    Best wishes,
    Barry

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  • Jacquij
    replied
    Thanks very much Ellie, perhaps Covid is having an impact on them.

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  • Ellie
    replied
    Hi Jacqui,

    Strange you didn't get a reply through FB. You can try emailing Barbara Byer on [email protected] as she is mentioned on their website as having helped other Europeans get generic Nuedexta from the US.

    I'm nearly sure Barry here tried it for a while, with ALS Worldwide's help - hopefully he'll post soon.

    Good luck.

    Love Ellie.

    Leave a comment:


  • Jacquij
    started a topic Nuedexta

    Nuedexta

    Hi Guys,

    I wonder if you can help. My MND Consultant has advised that I might benefit from Nuedexta, however this is not available in the UK. He has advised I contact ALS Worldwide. Unfortunately the contact form does not work on their website, and although I have messaged them through Facebook I have not had an answer. Does anybody have experience in obtaining Nuedexta and does anyone have a contact email address with ALS Worldwide.

    With many thanks

    Jacqui
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