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  1. Replies
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    Hi Ellie The ucl in London is where I was...

    Hi Ellie The ucl in London is where I was originally reffered to, I had my peg done there and after.my botox injections every 3 months .Now I am too weak to go by and the ambulance took 5 hours to...
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    Botox for Saliva control

    Hi I have been going to The the UCL hospital for Neurogy in London for the last 3 years for injections in the salivary glands to control the flood of saliva glands.My disease has woken up and is...
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    Hi Terry Thanks foo the hug in you previous...

    Hi Terry
    Thanks foo the hug in you previous post.
    I am settling down with the loss of more muscles but grateful for my left hand for now
    I have a visit from Communications next week with eye gaze...
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    Hi Ellie I agree that the hospices provide...

    Hi Ellie I agree that the hospices provide excellent care for mnd patients as well as cancer , In my Advance Decision I have asked to end my days there
    I have AAAT/Environment team bringing eye...
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    I am the original stater of the thread in may17...

    I am the original stater of the thread in may17 and looking back I now use toothpaste on a sponge first and hubby uses a small tooth brush to clean my teeth before diluted mouth wash .
    On...
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    Increased pain in legsI

    I started getting bad pain in ankle up to hip in September at night .My matress was changed in October to air and medication was upped Amyotrophic,Progabalin and Oromorph.After a few weeks of...
  7. Thread: Mags55

    by alfies mum
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    4,736

    R .I. P Mags. We spoke often and offered each...

    R .I. P Mags. We spoke often and offered each other support and advise .
    Xx
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    My carers are lovely and I do treat them well...

    My carers are lovely and I do treat them well .They know they can have a hot drink if they want and use the loo too..My young cat entertains them by riding on my hoist as it is wheeled and sitting on...
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    Help with Christmas

    I was starting to drown in Amazon boxes but this morning 1 of my carers came on her day off to sort everything for me.
    At the end she offered to take rubbish to the tip for me .
    Every thing now...
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    Hi Pinkelle I am sorry to hear you are falling.I...

    Hi Pinkelle I am sorry to hear you are falling.I was in the same position in August when I had a couple of minor falls before a major one.I decide to take to a wheelchair which was a basic manual one...
  11. Hi Micmac I was seen by a SALT early on and...

    Hi Micmac
    I was seen by a SALT early on and given exercise.i also had an x ray of my swallow which was uncomfortable and only showed what I knew in that it could only get worse.The exercise was...
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    Hi I have been looking on Amazon for board games...

    Hi
    I have been looking on Amazon for board games for 5,7 and 8 year olds to play rather than x box all the time. I have picked a fishing game a variant of buckaroo and card game for kids.Have a...
  13. Thread: Leg jerking

    by alfies mum
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    3,599

    I had a night of leg jerking this week that...

    I had a night of leg jerking this week that finally stopped about 5 am .i am lucky that it is Clonus as described by Ellie.As it is only occasionally I requested a double dose of Amitriptyline which...
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    So sorry hor your loss Mark xx

    So sorry hor your loss Mark xx
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    Hi Terry Thanks for responding I don’t know the...

    Hi Terry Thanks for responding I don’t know the make when it first Came my OT said it needed modification for my needs.When it comes Tuesday iwill try out to see how much support it gives
    AN xx
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    Lateral Boby Support for Wheelchairs

    I am getting my indoor power chair next week which I am excited about. I will need my headmaster collar on but I also need lateral support to stop my upper body leaning to one side.My OT Came today...
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    Hi Terry I will get the OT to look at my...

    Hi Terry
    I will get the OT to look at my posture and my size which is tiny.
    AM xx
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    Rise and recline chai

    I have had my chair for a while now but lately I have a problem staying upright .i lean to the left a lot and my OT came to review the chair she took some stuffing from one of the cushions to fill a...
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    Hi I am replying to this post myself as I now...

    Hi I am replying to this post myself as I now have the external lift installed and went outside for the first time in months yesterday.it gives a smooth decent with room on the back for an attendant...
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    Hi all Thanks for you advice.Today I managed to...

    Hi all Thanks for you advice.Today I managed to exit Guest mode and sign in with my I D. I have not used Predictable before and it will take a while to get to all it’s functions.
    AM
    X
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    Hi Terry thanks for the links AM X

    Hi Terry thanks for the links
    AM
    X
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    Predictable 5 . How do I exit Guest Mode

    Hi
    I was gifted the app yesterday and opted for Guest mode as it wanted my Apple password rather than fingerprint Iíd so I opted for being a guest. Now I am ready to register I canít find how to do...
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    Hi Andrew What are glasshouse exactly I have...

    Hi Andrew
    What are glasshouse exactly I have googled several times but not find anything that would help me .can I a little more information please
    AM
    X
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    Hi all The best my OT brought was one of strap...

    Hi all The best my OT brought was one of strap ones which I can’t put on myself and hubby gets annoyed with it.I do have an appointment with my mnd nurse coming up so will ask her
    AM
    X
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    In turning foot

    My right foot is turning inwards to a point where I have severe pain in the ankle the left is sure to follow the same way left has followed right all along
    I am looking for suitable splint to ease...
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