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  1. Replies
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    561

    Hi Mickmac, So glad you posted this. Hubby is...

    Hi Mickmac,

    So glad you posted this. Hubby is going into hospital for his PEG placement on Monday. Will be aware now of any changes that might occur.

    Wishing you all the best,
    Wailywoo x
  2. Thread: New

    by Wailywoo
    Replies
    12
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    1,240

    Oops, sorry, I didnít realise. Just trying to be...

    Oops, sorry, I didnít realise. Just trying to be helpful.... too zealous, obviously.

    Oh well, it was a good try.... hubby is over 65.

    Wailywoo x
  3. Thread: New

    by Wailywoo
    Replies
    12
    Views
    1,240

    Hi EmmaJ So sorry to hear of the diagnosis. I...

    Hi EmmaJ

    So sorry to hear of the diagnosis. I am the wife. It is quite a shock and best to plan ahead as much as you are able, is one piece of advice I would give as we seem to always be in crisis...
  4. Replies
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    608

    Icy cold leg each evening

    Hi,

    I donít quite know what to do with hubby. His right lower leg and foot, the one that his MND all started with, goes icy cold in the evenings. It is warm in the morning after a nights sleep,...
  5. Replies
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    1,238

    Hi all, Thank you so much for your replies. We...

    Hi all,

    Thank you so much for your replies. We decided against valerian for now and have decided to go along the route of massaging foot spa with essential oils in the evening and pain killers...
  6. Replies
    5
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    Valerian to help with sleep

    Hi all again,

    I am a little worried about hubby using anything to help him sleep at night. He has suggested valerian, a natural remedy, and I wondered if anyone had any ideas? I donít feel happy...
  7. Hi everyone, Thank you all for your replies. I...

    Hi everyone,

    Thank you all for your replies. I have noted everything.

    I am feeling a little more positive at the moment, so thought I would post a positive message. Hopefully we will get some...
  8. Sooooo........ I am sorry I have not replied to...

    Sooooo........ I am sorry I have not replied to the last few messages! I have been doing more since hubby couldn’t go out, but I am pleased to say we have found a safe way for him to get out of the...
  9. Thread: Struggling

    by Wailywoo
    Replies
    8
    Views
    1,431

    Hi Mamarics, I have just spent a little while...

    Hi Mamarics,

    I have just spent a little while reading the latest posts as I have been really busy for a couple of weeks and not been able to have a sit down and go through them.

    I just wanted...
  10. Thanks Dina, I can very well understand that...

    Thanks Dina,

    I can very well understand that feeling and feel it is similar to hubby’s way of looking at things.

    I was a little shocked yesterday when he said that he felt guilty for needing...
  11. Hi Kayleigh. Dina & Music man’s wife, Thank...

    Hi Kayleigh. Dina & Music man’s wife,

    Thank you very much for your messages, advice and kind words.

    Thank you for the link Kayleigh.

    I read it, but I am not sure what stage hubby is at...
  12. Hi Broostine93, Thank you very much for...

    Hi Broostine93,

    Thank you very much for leaving your message. I have a feeling things may begin changing. He has decided to go for the PEG now. He keeps asking about getting some rails outside the...
  13. Hi Barry, It’s strange how I read on here how...

    Hi Barry,

    It’s strange how I read on here how everyone seems to have been told what form of MND they have, where as hubby has not been told specifically. I am inclined to agree with your opinion....
  14. Hi Lynne, Thank you very much for taking the...

    Hi Lynne,

    Thank you very much for taking the time to reply to my post. I have had a lot of useful information given here and am very grateful to hear from everyone and glad you echo the advice...
  15. Haha Ellie, you have hit the nail on the head. He...

    Haha Ellie, you have hit the nail on the head. He is not ready to “accept” his MND. I have tried to let him know what a responsibility it is for me on my own. Our daughter has offered to stay with...
  16. Hi Dina, Terry and Ellie, Thank you very much...

    Hi Dina, Terry and Ellie,

    Thank you very much for your replies.

    I had a phone call this afternoon to make an appointment with the physio for Thursday morning. She is bringing things various to...
  17. Hi Barry, Thank you for such a quick reply. We...

    Hi Barry,

    Thank you for such a quick reply. We bought a wheelchair to keep in the boot of the car, but the last couple of times we have tried to go out, hubby has taken a tumble. He doesn't seem...
  18. Riluzole, Sleep & Ventilation, OT/Physio and PEG

    Hubby took two - yes two - riluzole tablets last month and had such a severe reaction to it that he couldn't take any more. He seems to be having such a bad time of things.... So sad watching him...
  19. Replies
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    Contrary

    Hi Ellie,

    I am loving that you are finding it funny that my hubby is contrary to some others, and it seems I have company with Polly there too. Donít get me wrong, he does get a little frustrated...
  20. Thread: First visit

    by Wailywoo
    Replies
    25
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    3,531

    Hi Polly, We experienced exactly the same...

    Hi Polly,

    We experienced exactly the same overwhelming information / advice about what interventions might be necessary. The PEG was the first and the most consistently advised intervention and...
  21. Replies
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    3,252

    Hi Gillette, Just thought, while I am on here...

    Hi Gillette,

    Just thought, while I am on here that hubby is getting weaker in the arms (already one leg not working at all and the other weakening) and has difficulty lifting his porridge bowl up...
  22. Replies
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    8,151

    Hi Ellie, Thank you so much for your reply. I...

    Hi Ellie,

    Thank you so much for your reply. I see that the dates are all in April about the Riluzole and our MND nurse has said it is not available after this....in May....

    When she phoned to...
  23. Replies
    34
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    8,151

    Hospice referral

    Thank you so much for your replies. I see it was 11th April when the last reply was posted and 9th May was the first time our SLT mentioned the hospice and complementary therapies, which I should be...
  24. Replies
    34
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    8,151

    Hi again, Thank you so much for your support...

    Hi again,

    Thank you so much for your support and kind words.

    No we haven’t had an offer of any other collar. The speech and language therapist came today and said that they now have to go...
  25. Replies
    34
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    8,151

    Hello, Thank you to everyone who answered my...

    Hello,

    Thank you to everyone who answered my last post. I have had a bit of a meltdown over the last week or so, so sorry I haven't been back to thank everyone for their kind replies. Some useful...
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