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  1. Replies
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    506

    THe plan is to go for sedation if they decide I'm...

    THe plan is to go for sedation if they decide I'm thin enough, and that will be decided on the day. I have an assessment sometime before then.
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    506

    Hi Hayls, Not experience as such, but facing...

    Hi Hayls,

    Not experience as such, but facing the same decision. I can weight-bear tolerably well, but am increasingly struggling to rise out of the wheelchair (and I already have all the lift a...
  3. Thread: Ivan

    by kd1
    Replies
    11
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    1,330

    Hi Ivan, I'm so sorry to hear about your...

    Hi Ivan,

    I'm so sorry to hear about your wife. We wouldn't wish another person to have to join us here . I've used CBD; for me I thought it helped a little with some symptoms, but had no impact...
  4. Thread: Dreams

    by kd1
    Replies
    7
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    1,538

    I often dream of walking again, only to have the...

    I often dream of walking again, only to have the unconscious brain kick in and add, "Really funny that, because you can't walk any more." The other night I dreamt I was in the wheelchair, bowling...
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    Hi Ben, I've been taking a capsule nightly -...

    Hi Ben,

    I've been taking a capsule nightly - with one break of a few weeks - for some months. Not sure I can see any results - maybe a little help with sleep - but I do find there are no...
  6. Thread: Terrified

    by kd1
    Replies
    9
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    1,945

    Of course you are terrified, and not just for...

    Of course you are terrified, and not just for yourself. But if your fears are realised (and they may not be - diagnosis works by excluding all other possibilities and some of these are rare) you...
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    Thanks both of you, and yes, those who praise...

    Thanks both of you, and yes, those who praise Scotland's health and social care provision are probably seeing only part of the picture. I simply couldn't have managed appropriate housing and...
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    OTs: signs of the times

    Hi,

    I'm in Edinburgh and all our long-term OTs have been taken away ("reorganised"). I am most dismayed by this; for 3 years an OT has been essential, pretty much a key worker, and invaluable in...
  9. Hi Sarah, You are not lazy. Don't allow self...

    Hi Sarah,

    You are not lazy. Don't allow self blame, because we all do the best we can with this wretched disease. And I can understand your concern about your wife; MND affects her and her life...
  10. Thread: Lining alone#2

    by kd1
    Replies
    26
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    7,153

    I too have no simple solutions but would...

    I too have no simple solutions but would encourage you to follow all the suggestions others have made. But I would add that I have found you don't have to be wheelchair bound immediately. You can use...
  11. Thread: Duty of care?

    by kd1
    Replies
    30
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    5,145

    Hi Dina, This is appalling - I am so sorry. We...

    Hi Dina,

    This is appalling - I am so sorry. We have quite enough to cope with - physical challenges and psychological ones - without the stress of feeling abandoned when your need for help is...
  12. Thread: after the fall

    by kd1
    Replies
    7
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    1,502

    Thanks, everyone. I've found the responses...

    Thanks, everyone. I've found the responses helpful and yes, to be safe and comfortablr has to be the priority.
    But one thing i have learnt - do not have a crisis in the 'annual leave' time of year....
  13. Thread: after the fall

    by kd1
    Replies
    7
    Views
    1,502

    Thanks for this, Ellie. Always helpful to get...

    Thanks for this, Ellie. Always helpful to get someone else's take. Currently without an OT, which is a big loss but the MND nurse is picking up some of the slack. And I am aware that although my flat...
  14. Thread: after the fall

    by kd1
    Replies
    7
    Views
    1,502

    after the fall

    Looking for advice...Till last week, I was using a walker indoors and wheelchair out, but fell(#34) midweek and sprained my ankle. But this fall was one of those horrible ones where the whole leg...
  15. Replies
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    Hi Panniertank, To go back to your original...

    Hi Panniertank,

    To go back to your original post, yes, I am living alone and very hard work it is too coping with this condition. But then, it's hard for everyone. I asked the mnd nurse how many...
  16. Replies
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    Hi Doug, I can't comment on the model - I had...

    Hi Doug,

    I can't comment on the model - I had to buy my own which is simpler in function - but while I hope your acquisition may indeed be premature, I can say I was every bit as reluctant to...
  17. Thread: Cbd

    by kd1
    Replies
    8
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    4,169

    Thanks, Lynne and Jonboy. Useful, to be reassured...

    Thanks, Lynne and Jonboy. Useful, to be reassured others face the same tricky choices re.drugs and to know what you have tried.
  18. Thread: Cbd

    by kd1
    Replies
    8
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    4,169

    May I ask if you are still walking and if it has...

    May I ask if you are still walking and if it has any impact on movement the following morning? And are there any side effects? I've ben prescribed a mild sedative, but when I get up the legs are...
  19. Replies
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    Yes, I set up a PoA early on. Cost a packet...

    Yes, I set up a PoA early on. Cost a packet (solictor) but the local hospice has a tame legal expert who would do it for almost nothing, as I found out too late. As Ellie says, they offer all sorts...
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    Hi, I too am living alone and it is very hard...

    Hi,
    I too am living alone and it is very hard work, with constant problem solving and planning. I moved to a new build - wide doorways, wet room - and have had adaptations added as I needed (like a...
  21. Thread: Not Coping Well

    by kd1
    Replies
    28
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    13,031

    I wonder if there is an organization that...

    I wonder if there is an organization that supports carers where you are? (There are several here that are brilliant). Because the first thing is to look after yourself in order that you can help...
  22. Thread: Oedema

    by kd1
    Replies
    15
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    5,947

    Might be worth mentioning that compression socks...

    Might be worth mentioning that compression socks can be very difficult to get on and off, even with aids, and can leave swollen feet frozen. I found mine made a small difference but had to give them...
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    HI there IV73, I've only just realised you are...

    HI there IV73,

    I've only just realised you are in Scotland. Do ask MND SCotland for support from their advocacy worker in the first instance, but they do also do advice on benefits (perhaps Power...
  24. Thread: DNR your choice?

    by kd1
    Replies
    17
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    4,417

    I don't know if this is helpful but I was told by...

    I don't know if this is helpful but I was told by the ventilation consulltant that a person with MND and breathing difficulties would never come off a ventilator if resuscitated. Kate
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