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  1. Thread: New

    by mickmac
    Replies
    12
    Views
    970

    Hi JoJo Welcome to the forum. I'm sorry to...

    Hi JoJo

    Welcome to the forum. I'm sorry to hear about your partner and the diagnosis with mnd. I'd encourage you to ask any questions about your experiences so far. Also there is a forum for...
  2. Replies
    5
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    1,254

    Hi 5mudge Welcome to the group. Sorry to hear...

    Hi 5mudge

    Welcome to the group. Sorry to hear that your husband is ignoring the disease and that must make it harder for you to cope. There have been various studies done about the causes of mnd...
  3. Hi Sorry to hear that the mnd is advanced so...

    Hi

    Sorry to hear that the mnd is advanced so quickly. Have you thought about getting a nose tube in. This can also be used for feeding and for giving mediction. I'm sorry that I can't advice on...
  4. Replies
    20
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    1,819

    Hi Sarah Sorry to hear that the procedure was...

    Hi Sarah

    Sorry to hear that the procedure was canceled. That must have been a bit of a shock for you. I think Terry has a good point about a rig instead. I have a rig and the actual procedure was...
  5. Replies
    5
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    682

    That's true Ellie. Will try and follow the...

    That's true Ellie. Will try and follow the instructions. :D
  6. Replies
    5
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    682

    Hi Guys Thanks for getting back to me. I do...

    Hi Guys

    Thanks for getting back to me. I do use the modified bag for the breath stacking and I have a prescription for exputex. I have never figured out when to take the exputex. Take it every...
  7. Replies
    5
    Views
    682

    Cough advice please.

    Hi everyone

    I'm back looking for peoples advice and experiences again. This afternoon I had problems with excessive coughing. It started with some gentle enough coughing but continued to get...
  8. Replies
    20
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    1,819

    Hi Sarah I hope that the Peg goes well. With...

    Hi Sarah

    I hope that the Peg goes well. With that in place you might be able to take liquid medications through the tube. If that's not possible I have found using a straw to suck up liquids is...
  9. Replies
    4
    Views
    677

    Hi all Thanks for your positive answers. I...

    Hi all

    Thanks for your positive answers. I certainly feel better after reading them. I have always gotten the flu shot since been diagnosed and it's worked out so far.

    I do have a nippy but...
  10. Replies
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    3,113

    Well done Dina. It would be great to get a visit...

    Well done Dina. It would be great to get a visit in hospital from someone who is in a similar situation to you. A great boost for you both I'd imagine. Hope you are both home soon.

    Mick.
  11. Thread: Hi

    by mickmac
    Replies
    19
    Views
    2,356

    Hi Serenity I'm sorry you're getting such a...

    Hi Serenity

    I'm sorry you're getting such a difficult introduction to mnd. I think most of us on here had a slower and gentler time at the start and that gives you time to get set up and cope...
  12. Replies
    4
    Views
    677

    Hospital Expreriances.

    Hi Everyone

    I wanted to discuss my recent experience in hospital for getting a Rig tube inserted and ask others here on the forum not about the specific procedure itself but more generally about...
  13. Thread: Hello

    by mickmac
    Replies
    10
    Views
    1,958

    Hi Chris Welcome to this forum and I hope you...

    Hi Chris

    Welcome to this forum and I hope you make good use of it. The forum is full of people who have experienced a wide range of symptoms and range from slow progression to fast. I hope your...
  14. Replies
    24
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    2,479

    Hi Dina Sorry to hear about your troubles. I'm...

    Hi Dina

    Sorry to hear about your troubles. I'm living with my parents and I'm surprised at the amount of work and time required for three feeds a day so the pump could be a consideration for me...
  15. Replies
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    2,479

    Thanks Ellie I hadn't considered those points....

    Thanks Ellie

    I hadn't considered those points.

    Mick.
  16. Replies
    24
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    2,479

    Hi Ellie I always sleep lying on my right hand...

    Hi Ellie

    I always sleep lying on my right hand side so I am not sure how that would work with the pump. Can you tell me what exactly is the advantage of using the pump instead of just using a...
  17. Replies
    24
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    2,479

    Hi Dina My bowels are back to normal now I...

    Hi Dina

    My bowels are back to normal now I think. I don't do any pump feeds I just use a syringe. Do you not find the night feeding a distraction. I'm afraid I won't be able to sleep if I use a...
  18. Replies
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    2,479

    Thanks to you both. I'm going to post a more...

    Thanks to you both. I'm going to post a more general question later today about hospital stays in general and the need for any other procedures.

    Mick.
  19. Replies
    24
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    2,479

    Hi Ellie Thanks for your comprehensive answer...

    Hi Ellie

    Thanks for your comprehensive answer yesterday and I have found that my bowels are settling down an awful lot in the last 24 hours. I am pretty sure I don't have an overflow. I had a...
  20. Replies
    24
    Views
    2,479

    Change in bowel movements.

    Hi everyone

    I got my Rig tube inserted on Monday and was released from hospital yesterday. In hospital I was taking a lot of laxatives along with movicol due to problems with constipation prior...
  21. Replies
    6
    Views
    862

    Probably six months or so. I've neglected my...

    Probably six months or so. I've neglected my breathing a bit.
  22. Replies
    6
    Views
    862

    Breathing tests for feeding tube.

    Hi all

    I'm due to have a rig tube inserted in the next few weeks and wanted to ask what sort of breathing tests are done beforehand. I know my breathing is a bit worse but I don't have any actual...
  23. Replies
    11
    Views
    1,727

    Hand positioning in wheelchair.

    Hi

    I'm having some trouble with my hands and wanted to check with people here before I talk to my OT. Basically my mnd started in my arms but then progressed to my legs. As a result I'm now in a...
  24. Thread: PEG and RIG

    by mickmac
    Replies
    152
    Views
    25,129

    Hi Sheila Just looking at your message about...

    Hi Sheila
    Just looking at your message about your throat and I had a similar enough experience two weeks ago. I haven't had a feeding tube yet but have noticed my swallow is a bit weaker. Lucky for...
  25. Thread: Ideas of food

    by mickmac
    Replies
    11
    Views
    1,901

    Hi Terry I do miss eating bread. I was in the...

    Hi Terry

    I do miss eating bread. I was in the hospice two weeks ago and I tried some bread and butter pudding with plenty of custard and it went down pretty easily if I took my time. I hadn't...
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