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Type: Posts; User: stev50

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  1. Replies
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    Hi Annjac, Sorry to hear you are...

    Hi Annjac,
    Sorry to hear you are feeling onset symptoms and waiting for diagnosis. From my experience as a carer of my wife "D ,s" travel and movement is difficult when it comes to...
  2. Thread: Frieda

    by stev50
    Replies
    38
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    3,098

    Hi Frieda, Welcome to the forum Sorry to hear...

    Hi Frieda, Welcome to the forum
    Sorry to hear you have your diagnosis and are having issues with medication. I guess I am speaking on behalf of my wife D as her carer. D has had the same problems...
  3. Thread: Limb Tremors

    by stev50
    Replies
    2
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    767

    Hi Ellie, thanks for your reply. Sorry for a...

    Hi Ellie,
    thanks for your reply. Sorry for a late response. Been ill myself after my latest re-occurring cancer inspection, all clear! but had infection afterwards. Back up and fighting again!....
  4. Thread: Limb Tremors

    by stev50
    Replies
    2
    Views
    767

    Limb Tremors

    My wife D is now into her third year of MND diagnosis. She is now fully quadriplegic and has been incapable of voluntarily moving her limbs. Lately i have noticed she has significant tremors in both...
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    1,679

    Devonmaid, As a carer...

    Devonmaid,
    As a carer for my wife who is now in the palliative stage of MND I admire your resolve, support and tenderness you have given Tony. So often its is a forgotten...
  6. Thread: Pain in bed

    by stev50
    Replies
    18
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    8,044

    Hi Andrewoz ,, i have tried different variations...

    Hi Andrewoz ,, i have tried different variations of beds for my wife D who along the journey is now quadraplegic. Having tried top of the range, i am told by the ot, which did not work for D, we...
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    22,050

    Hi Bern , Ref earlier replies, Definitely...

    Hi Bern ,
    Ref earlier replies,
    Definitely adjustable spanner, or c wrench to our Atlantic cousin is one thing for the travel bag. Who knows what foot turns up on the day..
    D,attended the local...
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    Hi Tim / murrjo 1, I can fullly understand how...

    Hi Tim / murrjo 1,
    I can fullly understand how you feel right now. My wife D has PBP /ALS and has recently become quadraplegic. She also suffers from restless feet syndrome. We have reached the...
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    Hi alfies mum et al, My wife D has tried...

    Hi alfies mum et al,
    My wife D has tried atropine for saliva control which did not work. Hyocine was not recommended because of the meds mix she is on. We moved onto a balancing act of the...
  10. Thread: DIY caring?

    by stev50
    Replies
    7
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    2,796

    Hi Ashley, I was sole carer...

    Hi Ashley,
    I was sole carer for my wife from her MND onset until after her official diagnosis. D ended up by that time in a similar physical condition as your wife after 6...
  11. Thread: Teeth

    by stev50
    Replies
    2
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    1,355

    Hi Andrew, D has a similar problem. I took her...

    Hi Andrew,
    D has a similar problem. I took her to dentist and got an impression made of her top front teeth. The plastic impression moulded up is enough to prevent the problem occurring at night....
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    2,352

    Hi Pinklollie, Sorry to...

    Hi Pinklollie,
    Sorry to hear of your situation. My wife D has CHC. My understanding was that unless D,s condition improved CHC funding would continue and her last assessment...
  13. Replies
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    9,734

    Hi Bern, My wife D has had...

    Hi Bern,
    My wife D has had similar problems now she has no swallow and little tongue movement. She had a bad choking episode a few weeks ago when carers tried to help her flush her...
  14. Thread: Hi

    by stev50
    Replies
    4
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    1,702

    Hi Iv73 Very sorry to hear of your progression...

    Hi Iv73
    Very sorry to hear of your progression and feelings today. Barry52, Nunhead man and ccinjersey et al are right in their comments. Seldom we are truelly totaly alone in this journey when...
  15. Replies
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    Hi Pal, Welcome to forum. Sorry to hear of your...

    Hi Pal,
    Welcome to forum. Sorry to hear of your husbands diagnosis. As you can see from the forum everyone is different in their progrees with MND. I care for my wife D who was diagnosed in April...
  16. Hello Roadahead, welcome to the forum. Sadly...

    Hello Roadahead,
    welcome to the forum. Sadly your road, no pun, to diagnosis is a familiar one to many here. This is a great place to find some answers and solutions to what might pop up in your...
  17. Replies
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    Hi Zeta, welcome to the forum and sorry to here...

    Hi Zeta, welcome to the forum and sorry to here of your dads diagnosis. My wife was diagnosed in April WITH ALS/MND/PBP. I went through mostly the same emotions as you. Take all the help you can get...
  18. Thread: New to Forum

    by stev50
    Replies
    12
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    2,995

    Oops, sorry for the wrong name Tim

    Oops, sorry for the wrong name Tim
  19. Thread: New to Forum

    by stev50
    Replies
    12
    Views
    2,995

    Hi Terry, Sorry to hear about...

    Hi Terry,
    Sorry to hear about your wife's diagnosis. D's symptoms started with a choking fit followed by a bad chest infection. After clearing that up her speech had deteriorated...
  20. Thread: New to Forum

    by stev50
    Replies
    12
    Views
    2,995

    Hi Terry, Thanks for the tip on the eye gaze...

    Hi Terry,
    Thanks for the tip on the eye gaze system. We did try the infra red pointing system but D could not keep her head steady due to weakness in her neck. We,ve got the OT involved again to...
  21. Thread: New to Forum

    by stev50
    Replies
    12
    Views
    2,995

    Thanks for all the kind replies. Ref Ellies...

    Thanks for all the kind replies. Ref Ellies comment we had SALT team in yesterday for D,s latest equipment up date with button switch.As she was right handed its a learing curve As was the change...
  22. Thread: New to Forum

    by stev50
    Replies
    12
    Views
    2,995

    New to Forum

    Hi all,
    my name is Steve and I am new to the Forum. My wife D showed the onset of MND almost a year ago today. Official diagnosis of PBP was in April but it was pretty clear what was wrong earlier....
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