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Type: Posts; User: met-rx

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  1. Replies
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    My father has CHC and is at home. The CHC covers...

    My father has CHC and is at home. The CHC covers his carers, who visit a couple of times a day, and also any respite he has in a care home. It would also cover him if he went into a care home...
  2. Thread: RIP Ezri

    by met-rx
    Replies
    14
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    4,780

    Very sad news Pen, I'm sorry for your loss x

    Very sad news Pen, I'm sorry for your loss x
  3. Thread: Eye Gaze tech

    by met-rx
    Replies
    7
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    2,526

    Fantastic! Thanks so much everyone :)

    Fantastic! Thanks so much everyone :)
  4. Thread: Eye Gaze tech

    by met-rx
    Replies
    7
    Views
    2,526

    Eye Gaze tech

    My dad is no longer able to use a computer/tablet/phone as he doesn't have enough power in his fingers to be able to press the buttons. Does anyone know if MNDA can help with eyegaze type tech -...
  5. Replies
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    4,737

    MNDA Connect gave me the contact for my local...

    MNDA Connect gave me the contact for my local branch, who said that they didn't offer anything for family members, just the person living with MND. I'll check to see if there is anything local to my...
  6. Replies
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    Thanks Terry, I'll check that out. Barry, no...

    Thanks Terry, I'll check that out.

    Barry, no we don't. I was told that MNDA meetings are not the family/carers so don't have a lot to do with them. I don't think dad is aware of anything...
  7. Replies
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    Hi Ellie, thanks for suggesting them. They only...

    Hi Ellie, thanks for suggesting them. They only do 1 day hire between Monday and Thursday. Not that great when I work Mon-Fri and want to go out at the weekend for an afternoon.

    The local taxi...
  8. Replies
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    4,737

    1 day vehicle hire

    Does anyone have information on places to hire a WAV in Essex/Kent? We'd like to be able to take my dad out for a day, but everywhere we have tried have said that there is a 3 or 4 day minimum hire...
  9. Thread: Hoist

    by met-rx
    Replies
    4
    Views
    2,436

    Thanks for the info! My mum could do with a...

    Thanks for the info! My mum could do with a hoist to help get my dad out of bed. I'll pass this on!
  10. Replies
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    Hi Emily I'm sorry to hear your news. My dad...

    Hi Emily
    I'm sorry to hear your news.
    My dad has PBP, he was diagnosed just over a year ago, Dad can no longer speak or swallow, and has a tube for all his nutrition. He did get very frustrated...
  11. Thread: Father with PBP

    by met-rx
    Replies
    13
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    5,032

    Hi Mike My dad also has PBP. He was diagnosed a...

    Hi Mike
    My dad also has PBP. He was diagnosed a year ago, after suffering symptoms for about 6 months. It's a bit of a shock, isn't it. Coming to terms with the inevitability of it has been the...
  12. Replies
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    This is something my parents have experienced. ...

    This is something my parents have experienced. My dad has no speech, so whenever mum was doing something financial on the phone that had originally been set up in dad's name - like Sky TV etc., it...
  13. Replies
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    5,770

    I'm so sorry for your loss x

    I'm so sorry for your loss
    x
  14. Thread: South Essex

    by met-rx
    Replies
    3
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    3,645

    Hi John, the email address I tried is on that...

    Hi John, the email address I tried is on that page. I'll try ringing instead. Thank you both :)
  15. Thread: South Essex

    by met-rx
    Replies
    3
    Views
    3,645

    South Essex

    I'm wondering if there's a support group in South Essex that I could go to for info as a family member. I had thought I'd found one, I emailed to see when their meetings were but I've had no...
  16. Replies
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    5,988

    My dad makes odd noises after yawning too. I...

    My dad makes odd noises after yawning too. I hadn't come across this symptom before, so thanks for sharing this. The joys of PBP/MND!
  17. Thread: Hospice care

    by met-rx
    Replies
    28
    Views
    10,529

    I'm so glad the hospice are a good support. My...

    I'm so glad the hospice are a good support. My dad's community team are great too, and he will be meeting the hospice team soon. Sending you both hugs
    M
  18. Replies
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    Thanks DVD. My dad's having his RIG fitted at...

    Thanks DVD. My dad's having his RIG fitted at the end of the month. I am hoping that it will take all the stress of swallowing, choking, finding things he can eat, out of his life. It sounds like...
  19. Replies
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    I've just got back from an appt with my dad, he's...

    I've just got back from an appt with my dad, he's having a RIG at the end of the month. He'll be in for 4 nights, which includes a sleep study. The op is done under local and then they'll teach him...
  20. Replies
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    Cough assist is now on my list, thanks :) He...

    Cough assist is now on my list, thanks :)

    He has the speech app on a tablet too, it's a recent gadget for him so still learning the way around it. He's out and about a lot, so the phone seems to...
  21. Replies
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    Thanks everyone. He's on Riluzole and is having...

    Thanks everyone. He's on Riluzole and is having someone from the support team out this week, and also has a SLT appointment booked. There is also an appointment at some stage with the breathing...
  22. Replies
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    Questions to ask consultant

    Hi all
    My dad has recently been diagnosed with PBP. I'm going with him to meet his consulant to get all the info he missed when he was given the diagnosis. Has anyone got any suggestions on things...
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