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  1. Thread: Is This Normal?

    by magic
    Replies
    12
    Views
    6,728

    Lynne, your response is understandable. The...

    Lynne, your response is understandable. The diagnosis imp,is such changes is what your future holds and the mind must take some time to adjust to these changes.
    Wishing you all the strength and...
  2. Replies
    11
    Views
    6,437

    So sorry you are having to fight Christine's...

    So sorry you are having to fight Christine's corner again. I am busy following the complaints procedure with several agencies and know how frustrating it is. Can only advise that you get as much as...
  3. Replies
    18
    Views
    7,810

    Billie, Concerned for your Mum because, when her...

    Billie, Concerned for your Mum because, when her muscles determinate further her ability to eat will as well. She may not be well enough to undergo the operation at this stage and her life expectancy...
  4. Replies
    13
    Views
    6,900

    Caz, watch out for workmen changing the way they...

    Caz, watch out for workmen changing the way they regard you. I have had a run in with an electrician who spoke to me quite aggressively. Know this would not have happened when Peter was here....
  5. Replies
    7
    Views
    2,753

    Welcome Mike but such regrets that you have the...

    Welcome Mike but such regrets that you have the need to be here. Lost my husband to MND four months ago and, both of us heathens, experienced so many spiritual moments as we lived through the various...
  6. Replies
    13
    Views
    6,900

    Helen, It is just 4 months some my husband died....

    Helen, It is just 4 months some my husband died. I am bereft and at sea. Like Caz, my future is not what I planned and, after 41 years of marriage I have not found my way on my own.
    I am about to...
  7. Thread: exhaustion

    by magic
    Replies
    13
    Views
    6,925

    Meant to write. That ,once the energy was used,...

    Meant to write. That ,once the energy was used, it would not be replenished that day. No matter what rests were taken. It was a difficult fact to accept but very important.
    Magc
  8. Thread: exhaustion

    by magic
    Replies
    13
    Views
    6,925

    My husband,Peter, experienced extreme fatigue. It...

    My husband,Peter, experienced extreme fatigue. It was the symptom that lead us to the MND. Diagnosis. He found it so hard. I always said to carers that he hd a matchbox full of energy and, on e it...
  9. Replies
    13
    Views
    5,913

    Bonnylass, I am a Geordie! My husband had...

    Bonnylass,
    I am a Geordie! My husband had spasmodic twitches in his legs and was prescribed quinine. This worked really well. You may want to consider this.
    Mgic
  10. Replies
    31
    Views
    19,822

    So sorry Gerald. Hope you have the help and...

    So sorry Gerald. Hope you have the help and support you need send that Christine is coping with the loss.
    Mahic
  11. Replies
    16
    Views
    8,493

    Hi Nettie, be kind to yourself. We were the same...

    Hi Nettie, be kind to yourself. We were the same with Peter, the sufferer, quite calm and me, the carer, frantic. We also had no family nearby but good friends and the forum will help you through. Do...
  12. Replies
    18
    Views
    11,451

    So sorry you and your Mum are in this state. I ...

    So sorry you and your Mum are in this state. I am surprised that you have a suggested life expectancy. It must be awful to be dealing with decisions about gastrostomy so soon after diagnosis. My...
  13. Replies
    31
    Views
    19,822

    Please add my support to your challenging...

    Please add my support to your challenging situation. I am pleased the agencies are pulling a few stops out for you. Stay strong.
    Magic
  14. Thread: Lin the bin

    by magic
    Replies
    7
    Views
    3,935

    Lin, my condolences. I lost my husband recently...

    Lin, my condolences. I lost my husband recently and suddenly. He was still ambulant and making the most of his restricted life. I di not want him to suffer any more but I cannot bare people saying...
  15. Thread: DS1500 form

    by magic
    Replies
    11
    Views
    16,786

    ESA is a payment to people of working age. It is...

    ESA is a payment to people of working age. It is an insidious instrument that can cause great distress to the seriously ill and disabled.
    Magic
  16. Thread: Pip

    by magic
    Replies
    88
    Views
    72,093

    Lilylou that is an excellent idea. Most local...

    Lilylou that is an excellent idea. Most local authorities hAve a benefits office but I understand they are grossly understaffed. The MNDA publish excellent advice sheets but, even when you read and...
  17. Thread: Peg procedure

    by magic
    Replies
    45
    Views
    43,276

    You did not have a good day yesterday Gerald!...

    You did not have a good day yesterday Gerald!
    Magic
  18. Replies
    13
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    8,511

    Gerald, Hope the district nurse helped sort...

    Gerald, Hope the district nurse helped sort things out. You must hanker for outings as the weather improves Nd I hope you get there soon. You are ready for a settled time.
    Magic
  19. Thread: Concerned mum

    by magic
    Replies
    12
    Views
    6,523

    Belle, there will not be so many Mums of people...

    Belle, there will not be so many Mums of people with MND here as it tends to be present predominantly in middle aged and older people. I have recently lost my husband to MND and could not have ...
  20. Replies
    3
    Views
    3,475

    All the advice given is important. We found that...

    All the advice given is important. We found that the joint use of a cough assist machine, respiratory clinic and a suction machine, district nurse, were really effective in helping Peter clear his...
  21. Thread: Carer

    by magic
    Replies
    5
    Views
    2,902

    Understand how you feel. Have you talked to MND...

    Understand how you feel. Have you talked to MND Connect? They are very helpful and informed. We had to pay for all improvements but did get decent seating, bed and toilet adaptation free of charge....
  22. Thread: scary moment

    by magic
    Replies
    9
    Views
    5,011

    So sorry that you had this scare Gerald. Agree...

    So sorry that you had this scare Gerald. Agree with last person that it may have been exhaustion from visit to daughter and grand daughter. Hope tomorrow is more reassuring.
    Magic
  23. Replies
    1,552
    Views
    498,059

    Well done Dave , Keep positive Nd enjoy the...

    Well done Dave ,
    Keep positive Nd enjoy the holiday.
    Mahoc
  24. Replies
    32
    Views
    27,585

    Peter had a clos o mat toilet and he really...

    Peter had a clos o mat toilet and he really valued the independence that it gave him. He did not use any other type.
    Magic
  25. Thread: respite

    by magic
    Replies
    8
    Views
    5,006

    Make sure you indulge yourself Nd don't just...

    Make sure you indulge yourself Nd don't just catch up on the jobs. You may have forgotten now to do this but think hard.
    Mahic
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