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  1. Thread: Oedema

    by Nigel
    Replies
    15
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    3,302

    Terry, thank you for your amazingly good advice...

    Terry, thank you for your amazingly good advice as always. I spoke with the MND nurse who said that the ones she is aware of are Flowtron but hospital use only. They are described for use to avoid...
  2. Thread: Oedema

    by Nigel
    Replies
    15
    Views
    3,302

    Thank you so much, Ihave an appointment with the...

    Thank you so much, Ihave an appointment with the GP and taking my wife so that we can be politely strong and firm! Thanks!
  3. Thread: Oedema

    by Nigel
    Replies
    15
    Views
    3,302

    Wow thank you all, you really are brilliant with...

    Wow thank you all, you really are brilliant with your help. Lovely to her from you Ellie and Terry your help and support is really appreciated. Ages ago you advised me about the Royo cushion which...
  4. Thread: Blood pressure

    by Nigel
    Replies
    2
    Views
    1,131

    Thank you for replying. I am going to phone the...

    Thank you for replying. I am going to phone the MND nurse and ask her advice rather than trying to battle the GP.... they also lost his urine sample re checking for type 2 diabetes but didn’t tell...
  5. Thread: Blood pressure

    by Nigel
    Replies
    2
    Views
    1,131

    Blood pressure

    Me again, donít post for ages then two!
    The other question I have is regarding blood pressure. I am taking part in the gTac research on MND in Edinburgh and when the nurse took my blood pressure it...
  6. Thread: Oedema

    by Nigel
    Replies
    15
    Views
    3,302

    Oedema

    Hi, I would be grateful if anyone can advise me regarding oedema of my feet. The MND started in my legs and I now use an electric wheelchair but can mobilise on a Troja, walking aid for short...
  7. Replies
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    5,470

    I'm not sure if this is relevant but my son...

    I'm not sure if this is relevant but my son bought me a camera/cam that will be fitted in the garden so I can watch the bird feeder, also a nest box with camera. I have a wall mounted TV with wifi so...
  8. Thread: Pain in the butt

    by Nigel
    Replies
    24
    Views
    7,505

    Today is a big day! My Roho cushion has been...

    Today is a big day! My Roho cushion has been delivered and fitted!!! Thanks everyone who commiserated but also gave advice and even offered to lend me their cushion to try!!! Sorry for all the...
  9. Thread: Pain in the butt

    by Nigel
    Replies
    24
    Views
    7,505

    The latest cushion is a viola II, the alternating...

    The latest cushion is a viola II, the alternating mode triggers strong fasciculations in my thighs and pins and needles in my left foot. Challenges eh.
  10. Thread: Pain in the butt

    by Nigel
    Replies
    24
    Views
    7,505

    Hi Ellie, I so respect what you and Terry share!...

    Hi Ellie, I so respect what you and Terry share! I was surprised you mentioned the single compartment Roho, the. Nurse mentioned one with projections which I think might be like this....ROHO Cushion...
  11. Thread: Pain in the butt

    by Nigel
    Replies
    24
    Views
    7,505

    Thanks so much Terry, I never realised how hard...

    Thanks so much Terry, I never realised how hard asking for help is. It's one thing if it's someone else but another having to ask for myself. I think it's called pride!
  12. Thread: Pain in the butt

    by Nigel
    Replies
    24
    Views
    7,505

    I ment to write air flow cushion not pair! It...

    I ment to write air flow cushion not pair! It arrived this am but up to now I'm still suffering and not able to sit long. Thanks for the mention of the Roho, do you know which one it is? The DN is...
  13. Thread: Pain in the butt

    by Nigel
    Replies
    24
    Views
    7,505

    Thanks again every one, your amazing and nothing...

    Thanks again every one, your amazing and nothing better than others who have had the same issues! So tomorrow I will get Chris to speak to the district nurse. I really struggle with having to kick up...
  14. Replies
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    3,692

    Thinking of you mate, sorry to hear that. Here's...

    Thinking of you mate, sorry to hear that. Here's hoping it slows down again and even improve again. Routing for you!
  15. Thread: Pain in the butt

    by Nigel
    Replies
    24
    Views
    7,505

    My new cushion has arrived, dropped off by the...

    My new cushion has arrived, dropped off by the wheelchair dept. It is a permaflex for medium risk of pressure point. It doesn't feel much different to the other cushion. I'm thinking that perhaps I...
  16. Thread: Pain in the butt

    by Nigel
    Replies
    24
    Views
    7,505

    Thank you soooo much for your helpful replies...

    Thank you soooo much for your helpful replies which also gives me hope there is a solution. I've contacted the OT and emphasised pressure point having moved from being able to sit without pain for an...
  17. Thread: Pain in the butt

    by Nigel
    Replies
    24
    Views
    7,505

    Pain in the butt

    Hi, any advice for relieving butt pain with sitting so long in the wheelchair? The OT said she will contact the wheelchair people to deliver another cushion. I'm only able to sit for an hour then...
  18. Replies
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    Amazon Echo... Alexa

    I was given Alexa for Christmas and have to say it's been very useful. My voice hasn't been affected by MND yet. I was given the small gadget which is under £50. It is so simple to set alarms to...
  19. Replies
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    8,672

    Hi Cath, well done re the cycle ride, it'll be...

    Hi Cath, well done re the cycle ride, it'll be good to hear more, well done!
  20. Replies
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    8,672

    Thank you Ellie, wow, you are so knowledgable!...

    Thank you Ellie, wow, you are so knowledgable! Thanks, in the same way... yey, I think!!!
  21. Replies
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    8,672

    Afraid we don't have a hospice but I have a...

    Afraid we don't have a hospice but I have a fantastic GP so will discuss the meds with her. Always good to know that there's help. Thanks for all your advice.
  22. Replies
    35
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    8,672

    Many thanks, I live in Shetland and my...

    Many thanks, I live in Shetland and my neurologist is in Aberdeen and we have a nurse who covers MND on Tuesdays. I think I will be more pro active and make contact then now I know there are more...
  23. Replies
    35
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    8,672

    Been to look on Amazon, is there a particular one...

    Been to look on Amazon, is there a particular one you'd recommend?
  24. Replies
    35
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    8,672

    Definitely going to get some. Do you take...

    Definitely going to get some. Do you take medication too?
  25. Replies
    35
    Views
    8,672

    Very painful spasms

    Before I was diagnosed with MND I experienced very painful spasms in my upper thighs and belly. During the investigations I was given Baclafen and it really helped. I take 8 a day but the spasms are...
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