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  1. Thread: Terrified

    by kd1
    Replies
    9
    Views
    615

    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...
  2. Replies
    3
    Views
    880

    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...
  3. Replies
    3
    Views
    880

    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...
  4. 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...
  5. Thread: Lining alone#2

    by kd1
    Replies
    16
    Views
    3,644

    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...
  6. Thread: Duty of care?

    by kd1
    Replies
    30
    Views
    4,515

    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...
  7. Thread: after the fall

    by kd1
    Replies
    7
    Views
    1,217

    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....
  8. Thread: after the fall

    by kd1
    Replies
    7
    Views
    1,217

    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...
  9. Thread: after the fall

    by kd1
    Replies
    7
    Views
    1,217

    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...
  10. Replies
    128
    Views
    26,611

    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...
  11. Replies
    38
    Views
    6,562

    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...
  12. Thread: Cbd

    by kd1
    Replies
    8
    Views
    2,717

    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.
  13. Thread: Cbd

    by kd1
    Replies
    8
    Views
    2,717

    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...
  14. Replies
    16
    Views
    4,403

    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...
  15. Replies
    16
    Views
    4,403

    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...
  16. Thread: Not Coping Well

    by kd1
    Replies
    28
    Views
    8,933

    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...
  17. Thread: Oedema

    by kd1
    Replies
    15
    Views
    5,169

    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...
  18. Replies
    41
    Views
    14,156

    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...
  19. Replies
    12
    Views
    3,375

    I have been experiencing overheating, say some...

    I have been experiencing overheating, say some time after the central heating has kicked in. Think my core temperature is stable, but my face goes a very bright red (traffic light, not a gentle...
  20. Thread: DNR your choice?

    by kd1
    Replies
    17
    Views
    3,911

    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
  21. Replies
    6
    Views
    1,684

    In Scotland I had to buy my own! I was diagnosed...

    In Scotland I had to buy my own! I was diagnosed after 65 (just) so don't get access to Motability; the OT could only get me a manual chair, which would not help me to stay independent. I bought a...
  22. Replies
    9
    Views
    2,402

    Check the brakes? My OT provided me with a basic...

    Check the brakes? My OT provided me with a basic NRS model, 4 wheeled with seat. The first one had such poor brakes it was replaced; the second is little better but a friend took it to a bike shop...
  23. Replies
    6
    Views
    1,590

    Hi there, MND Scotland kindly provides us...

    Hi there,

    MND Scotland kindly provides us with 20 free sessions of complementary treatment. I am having massage and because my biggest problems are to do with legs and feet, my therapist just...
  24. Replies
    22
    Views
    4,786

    Naturally your feelings are all over the place...

    Naturally your feelings are all over the place just now - things do tend to change and settle down. And it's exceptionally hard for a mum with a young child; I am so sorry. There's still a hope it...
  25. Thread: Hi there

    by kd1
    Replies
    7
    Views
    1,623

    Yes, my own hunch is that stress is a factor,...

    Yes, my own hunch is that stress is a factor, though the neurologists make less allowance for this. Good to know your view.
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