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Type: Posts; User: Rainey

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  1. Replies
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    Hi Everyone I'm terribly claustrophobic and got...

    Hi Everyone
    I'm terribly claustrophobic and got very upset with the two masks Papworth tried on me for a Nippy. Now I'm going in for an overnight stay to monitor me. My probem is I can't get my...
  2. Thread: Respite care

    by Rainey
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    6
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    4,236

    Respite care

    My husband has back problems and is finding having to use the hoist to get me out of bed, to the loo, into wheelchair etc, and back to bed again at night very painful on his back. The trouble is...
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    I'd love to see the 'goose stepping', at least...

    I'd love to see the 'goose stepping', at least you'd have a good laugh. As you progress with this damn disease, falling gets more difficult. I've had 2 falls this week, we can no longer get me up...
  4. Thread: Grieving

    by Rainey
    Replies
    334
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    119,022

    Nettie, Thinking of you, and your family and...

    Nettie, Thinking of you, and your family and friends, tomorrow. Love Rainey x
  5. Thread: Hi folks

    by Rainey
    Replies
    31
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    13,540

    Hi Everyone, I need advice! My grandson is...

    Hi Everyone, I need advice!
    My grandson is having an engagement party at his house, and I'd really like to go, all the family and friends will be there. HOWEVER, there isn't a downstairs toilet. ...
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    Nettie, my Bulbar is similar to that of your...

    Nettie, my Bulbar is similar to that of your Trevor's. I started with slurred speech, then difficulty swallowing (I can only manage thickened liquids now, but they make me choke occasionally). Then...
  7. Thread: Worth A Look

    by Rainey
    Replies
    4
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    2,642

    Wow! It made my heart beat faster. Incredible....

    Wow! It made my heart beat faster. Incredible. Thanks for sharing, Rainey.
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    My condolences, he is now at rest. Love from...

    My condolences, he is now at rest. Love from Rainey x
  9. Thread: Trevor

    by Rainey
    Replies
    56
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    21,497

    My condolences, Nettie, you have been a wonderful...

    My condolences, Nettie, you have been a wonderful carer and Trevor knew that. He is at peace now, no more fear or anger, he fought bravely. Love Rainey x
  10. Thread: Lovely weekend

    by Rainey
    Replies
    5
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    2,486

    Hi Pete, we too have had a lovely weekend. This...

    Hi Pete, we too have had a lovely weekend. This morning my husband wheeled me outside on the patio and we had breakfast together in the sun, well I had my complan! Then my daughter came and rubbed...
  11. Thread: Easter Sunday

    by Rainey
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    4,004

    We've just been to church, wonderful service and...

    We've just been to church, wonderful service and the choir excelled itself. Very peaceful experience. Happy Easter to everyone on this lovely spring day. Rainey
  12. Thread: Trevor update

    by Rainey
    Replies
    34
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    10,394

    Terry, regarding bed sore, nurse comes in and...

    Terry, regarding bed sore, nurse comes in and dresses it, it has a come and go theme, seems to be getting better then, wham, leaking like mad again. Very uncomfortable. I've have got a hospital bed...
  13. Thread: Trevor update

    by Rainey
    Replies
    34
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    10,394

    Hi Nettie and Trevor I hope all goes well this...

    Hi Nettie and Trevor
    I hope all goes well this holiday weekend - holiday?!! I'm not far behind Trevor in most things except, so far, my breathing is still not too bad although I have to sleep well...
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    Hi Mik I don't post much, I feel I'm not brave...

    Hi Mik
    I don't post much, I feel I'm not brave enough. I'm completely teed ( can't say the pi--ed word) off with this condition. It frightens me that almost each day it worsens and I sometimes...
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    14,429

    Hi Tigger You recently mentioned a machine which...

    Hi Tigger
    You recently mentioned a machine which helps you cough and clear your throat. Is it the suction machine, or something different? I'm desperate to get rid of phlegm and now find I...
  16. Hope you like it. I sound like a real boozer,...

    Hope you like it. I sound like a real boozer, but I'm not! Another good drink is Malibu with pineapple juice with a bit of thickener in! That's yummy too! Rainey.
  17. Not sure where this thread belongs, so putting it...

    Not sure where this thread belongs, so putting it here. I've just discovered a fantastic alcoholic drink that goes down without coughing or choking and thought I'd share it. Make up a glass with...
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    We bought Fiat Doblo 09 year for under 5K sight...

    We bought Fiat Doblo 09 year for under 5K sight unseen, online, delivered free with money back option, from Complete Care Shop. It's in really good condition, I drive my power chair up the ramp...
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    Thank you Lisa, that was very helpful. I was...

    Thank you Lisa, that was very helpful. I was officially diagnosed with Bulbar in April 2014 but we worked out that I had been having symptoms for at least 18months previously. In the past 3 months...
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    I have made the decision not to have a feeding...

    I have made the decision not to have a feeding tube. Is there anyone else out there who made the same decision, if so how are you doing? Info is available if you DO have the tube but no info if you...
  21. Hi Diane Sorry to hear about your partner's...

    Hi Diane
    Sorry to hear about your partner's diagnosis. You will get both get comfort from the forum. Rainey
  22. Thread: I'm new here

    by Rainey
    Replies
    43
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    15,729

    I took it while I was relatively mobile and...

    I took it while I was relatively mobile and functioning, but the moment I started to deteriorate I stopped. An extra few months when you are functioning is one thing but I decided the extra time...
  23. Thread: Grieving

    by Rainey
    Replies
    334
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    119,022

    What a wonderful send off, she would have been...

    What a wonderful send off, she would have been very proud of all her loved ones. Thank you for sharing with us.
  24. Thread: What to expect.

    by Rainey
    Replies
    11
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    5,743

    Welcome, Hanni Sorry your dad has been...

    Welcome, Hanni
    Sorry your dad has been diagnosed. We are all at different stages, no two people seem to 'progress' the same. Most of us joined the forum when diagnosed.
    Mine was a year ago...
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    Hi Keith Sorry you find yourself here, but the...

    Hi Keith
    Sorry you find yourself here, but the forum is a useful tool. If you have an iPad then my recommendation would be Speak It. I have recorded and saved on file loads of messages and...
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