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  • Lynne K
    replied
    I’m a Salford patient and waiting for an email from them to start MND Smart. My neurologist told me at my last clinic appointment that they were having a meeting about it on 17th Sep and they’ll contact all of us who are registered soon after. Nothing yet though. Lynne

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  • Jeanette Pearce
    replied
    Hello Racheir, I do hope you receive some good advice from this forum which will help you... I send you best wishes

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  • Ellie
    replied
    rachelr Welcome to the Forum, Rachel, sorry you've had to join us.

    I use a sea water nasal spray to loosen things up and then do something which kind of resembles a nose blow, ably assisted by a willing carer 🙂 I find this better than a decongestant.

    If your breathing and soft palate are good, you could try a salt water nasal wash, but do take care.

    Love Ellie.

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  • matthew55
    replied
    I have had that problem since the start and the way I deal with it is getting man sized tissues in bulk. 😊x

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  • GaryM
    replied
    Originally posted by rachelr View Post
    I am recently diagnosed and can’t blow my nose well as I have muscle weakness of the mouth. Any tips please?
    I don't have any answer, Rachel, but welcome to the forum. I'm sure someone else will have suggestions.

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  • rachelr
    replied
    I am recently diagnosed and can’t blow my nose well as I have muscle weakness of the mouth. Any tips please?

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  • Tess
    replied
    Welcome Suzy!

    A wedding is always a good occasion to look forwards to!

    My partner was diagnosed in January and we still have many overwhelming days here and there so I completely get the raw emotion you're feeling. There's a lot of information to retain to begin with. But there's many individuals with different progressions on here and therefore a good array of answers.

    Tess
    x

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  • Jeanette Pearce
    replied
    Hello Susy H

    When I told my Mumsy, brother and sisters I said to them to only shed happy tears... This has helped me when I become tearful and despite the tears when I say happy tears I smile 🙂

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  • richard
    replied
    Susy
    Welcome.

    You will get a lot of support on this forum from so many people. Learning how others deal with the same issues is a great help.
    Its a strange group in so much none of us really want to be here, but we are, and that’s important.

    Take each day at the time and find something to smile about each day. As my wife says ‘ We have to laugh or we will just cry’

    Richard

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  • Nettie
    replied
    I am under Salford x

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  • matthew55
    replied
    Just how many of us are under Salford? We should get together in person one day. 😊x

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  • Shaun
    replied
    Hello Suzy, MND is quite low on the importance list of conditions unfortunately, because we are all different, there’s no real one fix all remedy option. Smart may be our only viable option as the drugs are already available.

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  • GaryM
    replied
    I hadn't heard of the SMART trial until you mentioned it, Susy. As I'm under Salford, I'll look into it.

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  • Susy H
    replied
    Thanks to you all for your kind words. I know this group will be a great comfort and source of advice for me.
    i hope I can also help others too. Whilst I am still learning about the “joys” of MND I do know a lot about clinical trials and drug development having worked in this field for 25 years (obviously not MND). I was shocked at the lack of options for MND patients given how much progress has been made in oncology that has helped patients. I will watch the clinical trials with interest (mostly inUS unfortunately for us UK patients). I hope to enrol on MND Smart in the next few weeks too 🤞🤞 as its opening at Salford Royal then.

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  • Deb
    replied
    Hi Susy and a warm welcome to the forum,

    I am so sorry for your diagnosis...its such a shock and it's very early days for you. It's not surprising you feel overwhelmed and emotional. It sounds like you have support from a very loving family, which is such a help and I hope you have advice from professionals too.

    I was diagnosed at a similar age to you nearly three years ago. It was nine months before my son's wedding and I was worried about how I'd be but it was a wonderful day. Although I'm sure we all have dark days life does go on and there are still good times to be had.

    The forum is a good place for friendship and support from people who really understand.
    Take Care of yourself,
    Love Debbie x

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