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Type: Posts; User: loobylou

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  1. Replies
    32
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    5,834

    I have the same problem and was told the bladder...

    I have the same problem and was told the bladder problem was not necessarily connected to MND and was referred to a urologist. I am on both memedications for this, Solifenacin and Betmiga which can...
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    Hi David my feet are swollen to twice the size...

    Hi David

    my feet are swollen to twice the size and mostly stone cold. I wear orhtotics on both legs but I am in a wheelchair all the rime. The orthotics give me stability to shuffle round in the...
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    2,586

    THanks Ginger, Could write a book about the NHS,...

    THanks Ginger, Could write a book about the NHS, good and bad. Until you have been through a crisis of some sort and have to really engage with the services I don't think you see the big picture. ...
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    2,586

    Hi Ginger Sorry to say I was diagnosed last...

    Hi Ginger

    Sorry to say I was diagnosed last July and only started to see people this March, physio was one visit only. Just last week the MND nurse has offered me Hydrotherapy and is trying to...
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    I too am in the same position, live on my own,...

    I too am in the same position, live on my own, and only can just about stand up holding on, on a good day with one good hand.

    Sometimes when I can't get out of the wheelchair, and getting more...
  6. Thread: Kevin 55

    by loobylou
    Replies
    27
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    5,478

    I also have the familial link from my Mother of...

    I also have the familial link from my Mother of MND. She had Bulbar MND and died within 6 months of diagnosis. I have mixed symptons of ALS and PMS which I have had for 18 months, orthotics on both...
  7. Thread: Foot drop

    by loobylou
    Replies
    8
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    1,897

    Hi, I.m on my 3rd set of orthotics, I wear them...

    Hi, I.m on my 3rd set of orthotics, I wear them all day until I go to bed. They are right angled, carbon fibre, and I wear an additional insert to support the arch of my feet. I can go up and down...
  8. Thread: In denial

    by loobylou
    Replies
    27
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    5,916

    welcome Wend. great support on here to all your...

    welcome Wend. great support on here to all your questions, vents, anger and sadness.

    I have seen 4 consultants, not my choice and they still can't agree what tyoe of MND I have,. 2 MRI;s and 3...
  9. Thread: A dream

    by loobylou
    Replies
    6
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    2,305

    Hi Jaxx and Terry I also cannot believe that...

    Hi Jaxx and Terry

    I also cannot believe that in this day and age there is nothing that can be done for this horrid disease. I even asked the consultant once 'if you chopped my legs off and gave me...
  10. Thread: Wav

    by loobylou
    Replies
    24
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    9,236

    Thank you Terry. Much appreciated.

    Thank you Terry. Much appreciated.
  11. Thread: Wav

    by loobylou
    Replies
    24
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    9,236

    Thankyou all and for the link Terry. difficult...

    Thankyou all and for the link Terry. difficult making a forward decision on where my health is going to be at. As I live on my own its a question of how I think I will manage. Can get around a bit on...
  12. Thread: Wav

    by loobylou
    Replies
    24
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    9,236

    Thanks Terry, that's given me an idea of how it's...

    Thanks Terry, that's given me an idea of how it's done.
  13. Thread: Wav

    by loobylou
    Replies
    24
    Views
    9,236

    I have just been 'lucky' enough (not the right...

    I have just been 'lucky' enough (not the right word obviously) to be awarded the higher rate of PIP allowance and want to use the mobility part towards a WAV. Contacted the Mobility people who were...
  14. Replies
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    Its elasticated wider legs for me too, but...

    Its elasticated wider legs for me too, but getting shoes that dont rub my heels that are a problem. Just about to have my 3rd set of AFO's fitted, to try and prevent the problem, as they push the...
  15. Replies
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    3,035

    I have 2 AFO's . both for foot drop, one a lot...

    I have 2 AFO's . both for foot drop, one a lot worse than another. they go under your feet and fix your feet in an 'L' shape position and wrap round your lower leg with velcro, and have carbon fibre...
  16. Replies
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    3,932

    I've also had to fund alterations to my own...

    I've also had to fund alterations to my own downstairs bathroom, my OT told me it would be a 5 month process to get a grant which would be means tested, wouldn't probably get it and I needed the...
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