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  1. Replies
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    Great news Andy, I’m sure quite a few of us on...

    Great news Andy, I’m sure quite a few of us on this forum voted for you.

    Andy
  2. Thread: Hi, Im Juan

    by AndyB
    Replies
    17
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    2,848

    Hi Ellie, So far my breathing is unaffected by...

    Hi Ellie,

    So far my breathing is unaffected by my MND, it’s mainly my feet and legs with my hands occasionally joining the party. I’m having my breathing checked again next week so I’m hoping my...
  3. Thread: Hi, Im Juan

    by AndyB
    Replies
    17
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    2,848

    Hi Juan, Getting back on topic, shortly after...

    Hi Juan,

    Getting back on topic, shortly after my MND diagnosis I was referred to the sleep and ventilation clinic so that a baseline reading of my lung capacity could be taken. At my appointment...
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    Ah! the amazing Peugeot/ Citroen semi-automatic....

    Ah! the amazing Peugeot/ Citroen semi-automatic. I have that transmission in my Peugeot Horizon. Scary isnít it? I have to have an automatic though since I no longer have any control of my feet so...
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    Hi Anne I would suggest you contact the...

    Hi Anne

    I would suggest you contact the companies that build WAVs (you can find them all on the motability website) and enquire as to whether or not they sell their second hand vehicles directly,...
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    Hi Vicky I was originally given a ‘probable...

    Hi Vicky

    I was originally given a ‘probable MND’ diagnosis. I think it was around 6 months before it was confirmed as MND/ALS. I was claiming against a critical illness insurance policy and they...
  7. Thread: Fed up

    by AndyB
    Replies
    74
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    10,420

    Hi Pink, sorry to hear you are back in a hospice....

    Hi Pink, sorry to hear you are back in a hospice.

    I hope you are able to get to your son’s wedding.

    My son was married last month.......... in Austria. Thanks to my MND, my wife and I were...
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    Cambridge research

    http://https://www.theguardian.com/science/2019/mar/18/scientists-grow-mini-brain-on-the-move-that-can-contract-muscle

    Not sure if Iíve posted this link correctly, but hopefully it will take you...
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    5,081

    Hi Claire Sorry you have to be here, but...

    Hi Claire
    Sorry you have to be here, but “welcome”

    PIP is not means tested so your husband should be eligible even though he is still working. I’ve been in receipt of PIP since diagnosis in 2016...
  10. Thread: Merry Christmas

    by AndyB
    Replies
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    5,552

    Merry Christmas to everyone living with or caring...

    Merry Christmas to everyone living with or caring for someone with MND.
    Enjoy the festivities with your loved ones.

    Andy x
  11. Thread: free car tax

    by AndyB
    Replies
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    3,009

    Hi David If it's a Motability WAV, the rules...

    Hi David

    If it's a Motability WAV, the rules of Motability are that the car should only be used for the benefit of the disabled person. If you've taken her somewhere to drop her off then that is...
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    Hi David I applied for funding to help with...

    Hi David

    I applied for funding to help with the cost of converting our integral garage and downstairs toilet into a bedroom and wet room. My application was rejected mainly due to the fact that I...
  13. Thread: Aches and pains

    by AndyB
    Replies
    9
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    2,046

    Hi Andy For the last two or three months I’ve...

    Hi Andy
    For the last two or three months I’ve been waking up with terrible backache. I assume it’s due to my abdominal muscles starting to weaken. Once I get up and about the aching subsides. I...
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    Hi Kernowmum, My feet and legs are cold most of...

    Hi Kernowmum,
    My feet and legs are cold most of the time. At night in bed they start off freezing but at some point in the night they become ridiculously hot. I just assume it’s down to poor...
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    Hi Douglas, Welcome to the place you'd rather...

    Hi Douglas,
    Welcome to the place you'd rather not be. I was diagnosed in 2016 at the age of 58, I'm a software developer working increasingly from home prior to my earlier than planned retirement...
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    Hi Andy At the first local MNDA meeting that I...

    Hi Andy
    At the first local MNDA meeting that I went to back in 2016 there was a patient with MND and dementia/Alzheimer’s. His wife had been told that it is quite rare for people to have both but it...
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    Hi Jo I've not seen my GP since I was...

    Hi Jo

    I've not seen my GP since I was diagnosed over 2 years ago. With MND being so rare your GP probably has little experience of this disease. You will get far better advice and guidance from...
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    Diagnosed 2 years ago aged 58. Andy

    Diagnosed 2 years ago aged 58.
    Andy
  19. Replies
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    After my experience last summer, when I could...

    After my experience last summer, when I could still walk a short distance with a stick, I've decided to quit flying.
    The airports are responsible for providing assistance for disabled passengers but...
  20. Thread: Work

    by AndyB
    Replies
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    2,538

    Hi Redders 2 years on from diagnosis, I'm...

    Hi Redders

    2 years on from diagnosis, I'm still working. I'm actually at work now (on my lunch break).
    I have started working from home a day or two each week as it makes things easier for me,...
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    Hi Hunter I'm 2 years on from diagnosis having...

    Hi Hunter

    I'm 2 years on from diagnosis having been through the shock, the tears and the fears.
    I'm still working full time, though increasingly from home, and will no doubt have to retire quite...
  22. Thread: Leaving work

    by AndyB
    Replies
    8
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    1,692

    Hi Ginger I'm still working, some days from...

    Hi Ginger

    I'm still working, some days from home, trying to keep going as long as I can to try and keep things 'normal'.
    Are you claiming PIP? If not you should be. I've been receiving it since...
  23. Thread: In denial

    by AndyB
    Replies
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    5,636

    Hi Wend and welcome It's not a place any of us...

    Hi Wend and welcome
    It's not a place any of us want to be but as others have said you'll get lots of support in here. You can scream and shout and swear at us, we'll all understand.
    I was...
  24. Thread: Wav

    by AndyB
    Replies
    24
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    8,990

    Hi Terry I hadn't thought of left foot braking....

    Hi Terry
    I hadn't thought of left foot braking. However, my left foot is starting to become affected too and I'm sure I'll soon get the hang of the hand control. It's just another challenge that...
  25. Thread: Wav

    by AndyB
    Replies
    24
    Views
    8,990

    Hi Pink I'm having a Peugeot Partner WAV...

    Hi Pink

    I'm having a Peugeot Partner WAV delivered next week. It's basically the same car as the Berlingo.
    I tried it out with both my manual chair and my powerchair. It has a winch which helps...
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