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  • Bern
    replied
    Thank you Terry and Ellie. Our son and daughter-in-law have just visited and think we should change GP. It's not nice to have the worry over the weekend. Imagine if people don't have family support or don't have the support of this forum.
    Bern x

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  • Ellie
    replied
    Hi Bern,

    How awful you've to wait more than 3 days worrying about the results - shame on your GP

    It is important to have your liver enzymes measured while taking Riluzole, but one can only suppose your results might possibly be marginal, otherwise he would have advised you to stop taking it.

    There's no call for him to leave you panicking for days if he doesn't intend to talk to you until Tuesday afternoon!!

    Try not to worry.

    Ellie x.

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  • Terry
    replied
    Not so nice to be told at 6 pm Friday Bern;

    I guess if the results were really bad he would say stop taking riluzole now or reduce it to one tablet. Maybe try to see him face to face and make a list of any questions that might be relevant.

    Good GP's are hard to find, mine is quite good but I did have an excellent one for just over a year.

    Love Terry

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  • Bern
    replied
    In a bit of a panic. I've been taking Riluzole for a month and had my first blood tests yesterday. At just before 6 tonight, the GP receptionist phoned to say the doctor wanted a telephone consultation with me next Tuesday afternoon after 2:30 to discuss the liver results. I asked if I could come in to the surgery and was told no and that the doctor would decide that after the telephone consultation. I now have the whole weekend to think about it. I must say my consultant and entire team have been absolutely fabulous but the GP hasn't shown an ounce of empathy and I would go as far as saying that he is totally disinterested. Sorry - I just had to get this off my chest.
    Bern x

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  • Terry
    replied
    Hi Charles;

    I have replied on another more ( I think) fitting forum.

    http://forum.mndassociation.org/show...ht=predictable

    Love Terry

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  • njm
    replied
    BARRY:
    I HAVE SENT YOU ANOTHER PRIVATE MESSAGE INQUIRY ABOUT IPREDICTABLE.

    Charles

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  • Guest's Avatar
    Guest replied
    Oh , Didn't realise you could do both at the same time

    Originally posted by miranda View Post
    I skype my sons and grandsons. They talk, I type a reply. The screen tells them I'm typing so they know to wait before they speak again. Marvellous! Imagine how difficult it must have been a few years ago when none of this technology was available.

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  • miranda
    replied
    I skype my sons and grandsons. They talk, I type a reply. The screen tells them I'm typing so they know to wait before they speak again. Marvellous! Imagine how difficult it must have been a few years ago when none of this technology was available.

    Leave a comment:


  • Guest's Avatar
    Guest replied
    Hi Terry,

    Yes she does have a speech therapist I'm hoping she will get mum the app she need to help her communicating

    Thank you

    Originally posted by Terry View Post
    Hi VG;

    Sounds silly but can she email. It is one of the best things for some of us.

    Also, it's important that she has a Speech and language therapist, to help her get things.

    Hope all goes well on the 13th.

    Love Terry

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  • Guest's Avatar
    Guest replied
    Thanks Barry

    I will let my sister know as she will be with mum at the hospital ect as I am too far away



    Originally posted by Barry52 View Post
    Hi Lisa,

    Don't forget to insist on the provision of a communication device for your mum. Just mention AAC which is the acronym for Augmentative and Alternative Communication. It can be a postcode lottery but the NHS are compelled to provide this.

    Best wishes,
    Barry

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  • Barry52
    replied
    Hi Lisa,

    Don't forget to insist on the provision of a communication device for your mum. Just mention AAC which is the acronym for Augmentative and Alternative Communication. It can be a postcode lottery but the NHS are compelled to provide this.

    Best wishes,
    Barry

    Leave a comment:


  • Terry
    replied
    Hi VG;

    Sounds silly but can she email. It is one of the best things for some of us.

    Also, it's important that she has a Speech and language therapist, to help her get things.

    Hope all goes well on the 13th.

    Love Terry

    Leave a comment:


  • Jan
    replied
    You could Skype, if she can still write she could show you what she wants to say by holding it to the Skype screen

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  • Guest's Avatar
    Guest replied
    Thank you for your replies ,

    its been a frustrating few weeks, firstly mum was set home after they had no bed when she was booked in for her PEG to be fitted. Now I cant talk to her on the phone
    It made no difference talking to mum this morning and we both ended up getting frustrated which resulted in mum getting emotional which makes it worse .
    we have discussed skype but my brothers and sister think it will be no good as she will still have to speak.
    I hope she gets her text to voice app soon

    New op date is now 13 feb Fingers xed they have a bed this time.

    Leave a comment:


  • Ellie
    replied
    Hi Lisa,

    There's no hard & fast rule for Riluzole. It's said to add 10% to one's life expectancy and works better in some people than others.
    It's very subjective as who knows what your mum's progress would be if not taking Riluzole.

    If she is tired, everything is more of an effort, including talking. You could talk to her Clinic about taking a break from the Riluzole to see if she has more energy and then she can make a decision as to continuing on it or not.

    She will need some communication device asap.

    Ellie x.

    Leave a comment:

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