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Type: Posts; User: Ali_Chris

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  1. Thread: Head brace

    by Ali_Chris
    Replies
    2
    Views
    800

    Head brace

    Hi everyone my husbands neck has got so weak he is finding that the head masters collar is not doing the job now , he has the new mnd snood but can't get on with it , I think he needs something to go...
  2. Replies
    41
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    11,590

    im so sorry to read this , this must be so awful...

    im so sorry to read this , this must be so awful for you with what you are going though .Make sure you seek advice xx
  3. Replies
    26
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    4,791

    Hi Catsparkle. If I can just add to the wonderful...

    Hi Catsparkle. If I can just add to the wonderful words here, keep strong and be positive. Nothing is ever as bad as it seems. MND is a pick and mix condition. No two people get the same version.
  4. Thread: Genetic

    by Ali_Chris
    Replies
    4
    Views
    1,113

    Hi Fiona. Often, the things we worry about never...

    Hi Fiona. Often, the things we worry about never happen. Its the things that floor us on some random Tuesday afternoon that does the job. Not that you should worry about that. Just get on with your...
  5. Hi missmandikat . It is reckoned that using a...

    Hi missmandikat . It is reckoned that using a BIPAP machine for at least 4 hours continuous each day has a health benefit. But how this translates into life expectancy, no one can tell you. But what...
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    2,014

    Its good advice re getting out. Its amazing how...

    Its good advice re getting out. Its amazing how much it lifts the spirit just being outside. Keep your chin up...
  7. Replies
    62
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    7,989

    Everyone suffers meltdowns. Its normal in life...

    Everyone suffers meltdowns. Its normal in life and as we get older, we start to wish things had been different etc. I think you may be suffering from Reactive Depression. Its a kind of depression...
  8. Replies
    15
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    3,450

    I take magnesium supps. This treats most of the...

    I take magnesium supps. This treats most of the cramps. I still get some cramping but not as bad now.
  9. Thread: Supplements

    by Ali_Chris
    Replies
    21
    Views
    4,848

    It is if you say it is ;)

    It is if you say it is ;)
  10. Replies
    26
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    4,581

    I was 61. I am 63 now and fighting it tooth and...

    I was 61. I am 63 now and fighting it tooth and claw with every cell in my body. Its going to be messy and I will come off worst. But MND will know all about me at the end...
  11. Thread: Supplements

    by Ali_Chris
    Replies
    21
    Views
    4,848

    Hi Marigold. This is standard advice from the...

    Hi Marigold. This is standard advice from the medical profession. They dont believe in supps. But aids is treated with around 100 compounds. Some of them are supps. So, if his condition is ever to...
  12. Thread: Work

    by Ali_Chris
    Replies
    10
    Views
    2,244

    Redders. I still work. Although its at home full...

    Redders. I still work. Although its at home full time now. I was also taken into work by my wife in the wav. I had to take some time off work recently and during that time off, I lost all confidence...
  13. Thread: Feeling low

    by Ali_Chris
    Replies
    23
    Views
    4,268

    Hi Carol. Yes I have a possible solution....

    Hi Carol. Yes I have a possible solution. Counselling.
    Your life is not over. When I saw you had had it since 2008, I thought wow.

    You really are doing well. Focus on what you can do. Not how yu...
  14. Replies
    14
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    4,444

    Hi Pen. I understand your anguish. But honestly?...

    Hi Pen. I understand your anguish. But honestly? There is no telling. MND is a variable chronic condition (meaning it wont get better) but it can do lots of things. It can slow down or just stop. I...
  15. Replies
    5
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    1,753

    Royo. Nothing is ever as bad as it seems. Going...

    Royo. Nothing is ever as bad as it seems. Going on line and searching for MND is like pain shopping. What will happen to you, no one knows. Everyone is different and everyones MND journey is...
  16. Thread: RIP Dude

    by Ali_Chris
    Replies
    22
    Views
    6,174

    So sorry to hear of your loss. Our thoughts are...

    So sorry to hear of your loss. Our thoughts are with you and your family.
  17. Replies
    5
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    1,950

    Its amazing what you can take and still keep...

    Its amazing what you can take and still keep going. It kinda reminds me of a rocky saying:

    It Ain’t How Hard You Hit…It’s How Hard You Can Get Hit and Keep Moving Forward. It's About How Much You...
  18. Thread: Fatigue

    by Ali_Chris
    Replies
    42
    Views
    8,699

    I would say if your waking up tired you may have...

    I would say if your waking up tired you may have a respiration problem. I never got headaches. Do you wake a lot in the night or sleep like a log?
  19. Thread: Fatigue

    by Ali_Chris
    Replies
    42
    Views
    8,699

    Do you have headaches in the morning? Have you...

    Do you have headaches in the morning? Have you had a respiratory assessment?

    Fatigue is a part of this condition though. But it may be related to your oxygen sats when you sleep,
  20. Replies
    42
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    8,779

    Cool. Glad all went well. Start slow with the...

    Cool. Glad all went well. Start slow with the air. An hour a day and work up to at least 4 hours in one go. Can make a big difference,
  21. Replies
    8
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    1,944

    Keep your chin up Ginger and I like your...

    Keep your chin up Ginger and I like your attitude. I am still working although taken in now as I have stopped driving and my long suffering wife does all my driving and looks after me. This condition...
  22. Replies
    42
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    8,779

    I was in 24 hours as I was sedated during the op....

    I was in 24 hours as I was sedated during the op. Be positive thats the best way. As others have said about the weight gain. If you can get him to use mask for 4 hours plus per day it will make a...
  23. Replies
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    1,727

    Thanks for all your comments. I think an OT is in...

    Thanks for all your comments. I think an OT is in order.
  24. Replies
    34
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    6,858

    Poor Barry. I hope you heal quickly. I know how...

    Poor Barry. I hope you heal quickly. I know how you like to get about and it must really grieve you to be stuck. Chin up mate.
  25. Thread: Sock Machine

    by Ali_Chris
    Replies
    3
    Views
    991

    Love the plastic bag method. Will show the wife....

    Love the plastic bag method. Will show the wife. Thanks Ellie.
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