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  1. Replies
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    6,305

    Hi Terry I totally agree, you don't need all...

    Hi Terry
    I totally agree, you don't need all that when first diagnosed. It is frightening enough and nobody knows how MND is going to effect them , it's as you say ask questions as they come into...
  2. Thread: bereavment

    by raymond
    Replies
    30
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    13,999

    So very sorry to hear such sad news. Please...

    So very sorry to hear such sad news. Please accept my condolences .

    R.I.P Sue

    Love Chris x
  3. Thread: Sad news

    by raymond
    Replies
    19
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    4,404

    Hi Kernowmum So very sorry for your loss. Like...

    Hi Kernowmum

    So very sorry for your loss. Like you said he's free from pain now

    Take care and look after your self

    Love Chris x
  4. Replies
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    14,727

    Hi Doug Thanks for that explanation . I...

    Hi Doug
    Thanks for that explanation . I understand that they have very similar characteristics but you have explained it well .

    I hope that one day someone might come up with a treatment that...
  5. Replies
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    14,727

    Hi Andy Thanks for your reply yes I do...

    Hi Andy
    Thanks for your reply yes I do understand the link and the possibility of a drug for Parkinson's working for MND . I don't know a lot about Parkinson's because my dad was diagnosed before we...
  6. Replies
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    14,727

    Hi I understand that there is a trial for a drug...

    Hi
    I understand that there is a trial for a drug to treat Parkinson's which could help with MND , but the two illnesses are not related . I asked my neurologist when I was first diagnosed because...
  7. Replies
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    15,342

    Hi Lynne Our local authority supplied mine not...

    Hi Lynne
    Our local authority supplied mine not the MNDA , but I think it does depend on where you live . Another case of the post code lottery maybe
    Love Chris
  8. Replies
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    15,342

    Hi Lynne I got a rise and recliner from the OT...

    Hi Lynne

    I got a rise and recliner from the OT when I was first diagnosed because I had a back problem and couldn't sit on a normal height chair. We have altered it a few times as it is in...
  9. Thread: PEG and RIG

    by raymond
    Replies
    152
    Views
    30,517

    Welcome home Pink I am sure you will soon get...

    Welcome home Pink

    I am sure you will soon get used to things in a little while , you haven't been home in ages it will feel strange . Onwards and upwards now you are back home .

    Take care and...
  10. Thread: PEG and RIG

    by raymond
    Replies
    152
    Views
    30,517

    Hi Pink It's good to hear that you are feeling...

    Hi Pink
    It's good to hear that you are feeling a lot better. You sound as though you have had marvellous treatment at the hospice .
    I too have noticed a deterioration in my speech lets hope it...
  11. Thread: PEG and RIG

    by raymond
    Replies
    152
    Views
    30,517

    Hi Pinkelle I am so sorry that you have been...

    Hi Pinkelle
    I am so sorry that you have been poorly . I have been thinking about you , and wondering how you were , I thought it strange that we hadn't heard from you !

    You do right to refuse to...
  12. Replies
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    4,415

    Hi Andy Just had a look in magazine and it is...

    Hi Andy
    Just had a look in magazine and it is indeed a separate process , and it is a tissue donation with a brain bank . I think it is what Barry meant but instead of saying tissue he said organ...
  13. Thread: Housing

    by raymond
    Replies
    58
    Views
    20,620

    Hi Lynne I know you must have been disappointed...

    Hi Lynne
    I know you must have been disappointed that it wasn't a bungalow, but if you were to refuse it you could be waiting a while for one to turn up . I am sure it will turn out to be ok . It is...
  14. Replies
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    32,413

    Hi Douglas and Christine and a warm welcome to...

    Hi
    Douglas and Christine and a warm welcome to the Forum. It is sad that you find yourselves here but very encouraging that you obviously support each other very much.

    It is a long hard road but...
  15. Thread: PEG and RIG

    by raymond
    Replies
    152
    Views
    30,517

    Oh dear Pink so sorry you are having such an...

    Oh dear Pink so sorry you are having such an awful time .
    I hope the hospitals up here are better , because if I thought they were the same it would put me off having the operation. I know they are...
  16. Thread: PEG and RIG

    by raymond
    Replies
    152
    Views
    30,517

    So glad it went well Pink . It's not very...

    So glad it went well Pink . It's not very impressive that a hospital is not geared up for disabled people though, and also that you weren't sedated !

    Hope you are soon back at home ,safe and...
  17. Replies
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    Hi Twinkle I just had a very small policy with...

    Hi Twinkle
    I just had a very small policy with the Post Office . An over fifties plan that I had a while, and every year they sent me a letter to try and make me take another out with them. So this...
  18. Thread: PEG and RIG

    by raymond
    Replies
    152
    Views
    30,517

    Hi Terry Thanks for your reply . I will...

    Hi Terry
    Thanks for your reply . I will certainly try the Fortisip until I can see a dietician. I don't know how much weight I have lost because I cannot stand on scales , well I can with my...
  19. Thread: PEG and RIG

    by raymond
    Replies
    152
    Views
    30,517

    Hi Ellie Thanks for the advice it's much...

    Hi Ellie
    Thanks for the advice it's much appreciated . I have been losing weight steadily since before diagnosis . I don't have a Dietician I will have a word with my OT


    The OT is the only...
  20. Thread: PEG and RIG

    by raymond
    Replies
    152
    Views
    30,517

    Hi Pink I thought that losing weight was part of...

    Hi Pink I thought that losing weight was part of MND . I am eating normal meals although a bit smaller portions than I used to have when I was more active , but have lost weight due mainly to muscle...
  21. Thread: PEG and RIG

    by raymond
    Replies
    152
    Views
    30,517

    Good luck Pink hope all goes well ! Like Barry...

    Good luck Pink hope all goes well ! Like Barry says let us know how it goes . I said at the start of this journey that I wouldn't have a feeding tube , but I am not so sure now !


    Love Chris
  22. Thread: Housing

    by raymond
    Replies
    58
    Views
    20,620

    Oh Lynne, I do hope you do get the bungalow and...

    Oh Lynne, I do hope you do get the bungalow and are settled before Christmas. It will be a tremendous weight off your mind .
    Fingers crossed a little while longer then


    Love Chris
  23. Thread: Flu Jab 2016

    by raymond
    Replies
    43
    Views
    35,870

    Hi I have had both of them within the last week...

    Hi I have had both of them within the last week with no reaction only very sore stiff arms from the jab site . I didn't know about the pneumonia one but the nurse suggested it when I had the flu jab....
  24. Replies
    27
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    17,564

    Hi Marigold I am the same with wine or any...

    Hi Marigold
    I am the same with wine or any alcohol now , have always liked a drink but haven't had one now for over a year . One just made me feel as though I'd had a lot . I put it down to the...
  25. Replies
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    17,564

    Hi Marigold I did my voice recording at the...

    Hi Marigold
    I did my voice recording at the beginning of the year with Model Talker . I used to do 150 a session then go back over them if they were red , or yellow . I was told that as long as...
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