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  1. Replies
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    Hi Doug I havenít been on this forum for a...

    Hi Doug

    I havenít been on this forum for a while, but I came on today and saw your post and it struck a chord with me.

    I too increasingly struggle to turn over in bed. I no longer have any use...
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    Hi Lindy, I had critical illness insurance...

    Hi Lindy,

    I had critical illness insurance that I originally took out in 1995 with AXA insurance which has since been taken over by Aviva. I claimed in 2016 when I was diagnosed with MND. My...
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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
  4. Thread: Hi, Im Juan

    by AndyB
    Replies
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    4,114

    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...
  5. Thread: Hi, Im Juan

    by AndyB
    Replies
    17
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    4,114

    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...
  9. Thread: Fed up

    by AndyB
    Replies
    74
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    14,639

    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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    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...
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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...
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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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    I bought myself a scooter last summer, cost me...

    I bought myself a scooter last summer, cost me about £800. I received my powerchair about 3 months ago. The powerchair is great for around the house (though I prefer to walk with crutches at the...
  15. Thread: So so tired

    by AndyB
    Replies
    55
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    12,894

    Hi Ellie, Sorry for the delayed response. I've...

    Hi Ellie,
    Sorry for the delayed response.
    I've been told that my MND is the ALS variety. I have seen a physio a couple of times and she has given me exercises to do to stretch the muscles. I'm not...
  16. Thread: So so tired

    by AndyB
    Replies
    55
    Views
    12,894

    Hi Ellie, Yes I think my MND is relatively slow....

    Hi Ellie,
    Yes I think my MND is relatively slow. I was diagnosed May 2016, it's mainly affecting my legs. I can still just about walk with a walking stick or crutches and I've had a few occasions of...
  17. Thread: So so tired

    by AndyB
    Replies
    55
    Views
    12,894

    No typo Ellie. My breathing is currently...

    No typo Ellie.
    My breathing is currently unaffected by MND. When I went for a breathing assessment following my MND diagnosis, my wife mentioned to the consultant that I snore and wake myself up....
  18. Thread: So so tired

    by AndyB
    Replies
    55
    Views
    12,894

    Hi Pink You're not alone, I feel shattered all...

    Hi Pink
    You're not alone, I feel shattered all of the time.
    I have a CPAP machine which helps me to sleep well, but I still wake up feeling like I should be going to bed not getting out of it....
  19. Thread: Wet Room Help

    by AndyB
    Replies
    37
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    17,962

    Hi everyone, Since I'm currently in the process...

    Hi everyone,
    Since I'm currently in the process of having my own wet room set up for me I thought I'd join in with this thread.

    Like many I'm self-funding. Our house has (had) an integral garage...
  20. Replies
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    12,521

    Yes, thanks Barry, I've been told I should get...

    Yes, thanks Barry, I've been told I should get some funding as and when required, but as Charles has said it's best to get things in place before they are needed.

    Best wishes Andy
  21. Replies
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    12,521

    Hi Charles I haven't downloaded my voice from...

    Hi Charles
    I haven't downloaded my voice from ModelTalker yet. What I have done though is type in a few trial sentences within the MT online software to see what it sounds like. When you hear your...
  22. Replies
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    12,521

    Lynne, I used ModelTalker, I didn't have to...

    Lynne, I used ModelTalker, I didn't have to download anything, just set up an account and record it online. There is now a charge of $100 for those registering after July 2016, it was free when I...
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    Hi Lynne Glad you didn't hurt yourself and...

    Hi Lynne

    Glad you didn't hurt yourself and some one was around to help you up. One of my biggest fears is falling and there being no one around to help as I really struggle with my legs now.
    I...
  24. Thread: Wet Room Help

    by AndyB
    Replies
    37
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    17,962

    Chris I'm with you on that, it's not exactly...

    Chris I'm with you on that, it's not exactly rocket science is it? You'd think the OTs would have some sort of fact sheet specifying the minimum requirements rather than us each having to work it out...
  25. Thread: Wet Room Help

    by AndyB
    Replies
    37
    Views
    17,962

    Hi Chris I'm going through the same process....

    Hi Chris
    I'm going through the same process. Still working so no financial support but they offered to project manage for 10% of the cost of the work !!! (I declined their kind offer )
    So we have...
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