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Type: Posts; User: missmuffett

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    Nippy and final mnd stage for me.....

    Daft question probably! Do I keep neck brace on all night with nippy cos great help but would like rest from it?
    Palliative care nurse is admitting me in to the hospice Mon / Tuesday as now in...
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    [QUOTE=Terry;69699]Hi Missmuffett; Sorry to...

    [QUOTE=Terry;69699]Hi Missmuffett;

    Sorry to hear of your understandable distress. I have heard that Larasipam can take away some of the panic problems associated with breathing.

    Love...
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    I started with falls for 12-18 months and in a...

    I started with falls for 12-18 months and in a wheelchair from November last year.Christmas my swallow weakened April my voice started to fade.June had PEG fitted and been using for food,fluids and...
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    Faulty air mattress

    My air mattress is faulty,it has been checked twice and parts replaced.The man only came out yesterday and within 20 minutes of being back in bed I was in a big dip and having difficulty breathing! ...
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    Hi! I have ALS and cannot walk,talk properly and...

    Hi! I have ALS and cannot walk,talk properly and very recently had to stop eating and am now PEG fed food supplements.I am allowed only tiny tasters on my tongue else I start choking and...
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    Thanks for advice and my district nurse is...

    Thanks for advice and my district nurse is sorting out something to help me relax a bit more and hopefully use the nippy machine to improve my breathing.
    The longest I have worn my mask is 1...
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    Hiya,I am concerned that I I just can't get...

    Hiya,I am concerned that I
    I just can't get used to the ventilation masks(yes plural(!) as have nasal ,nose/ mouth ,complete facial one) I just dislike the feeling of suffocation that I get with...
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    It's coming up to 12 months for me too,mine is...

    It's coming up to 12 months for me too,mine is the end of April.Since that date, I have lost the full use of my legs in November,hands and arms now weakening,my lack of swallow means no more crisps...
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    It is indeed a missed opportunity to get people...

    It is indeed a missed opportunity to get people more aware of motor neuron disease but if he was eg drooling ,falling etc ,not nice symptoms for a member of the public let alone a celebrity ! RIP...
  10. Hi Bob, Well ,found your introduction and once...

    Hi Bob,
    Well ,found your introduction and once again welcome to the forum!So sad that another person has succumbed to this dreadful disease! At the day hospice I attend ,there are 3 of us with...
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    Hi Bob,Thankyou for your reply and a big welcome...

    Hi Bob,Thankyou for your reply and a big welcome to the forum!
    I have only posted a few times myself but have found great solace in the fact that I am not alone with this awful illness! Take care...
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    Thankyou for your advice and I will get that...

    Thankyou for your advice and I will get that appointment made to see my gp.I didn't expect plain sailing by any means but the symptoms have gotten worse so quickly it's been a roller coaster ride...
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    Feeling sorry for myself or what?

    Hiya,I am a terrible patient for my husband and can't stop myself! I haven't been able to walk around since November 2015 ,followed by the beginning of the loss of my voice in December!I have a very...
  14. Thread: deafness!

    by missmuffett
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    deafness suddenly went a week or so back!hurray!

    deafness suddenly went a week or so back!hurray!
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    i have been advised to consider having a PEG...

    i have been advised to consider having a PEG fitted whilst i am still relatively healthy,cos once you get weak and frail the procedure will not be done.I have had swallowing and talking problems...
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    Raised platelets count

    Hi! Has anyone else been referred to a Haematologist because a blood test confirmed raised platelets over a period of time?(they were high at start of my riluzole treatment too.Been told to reduce my...
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    Do you have an Occupational therapist,mine said...

    Do you have an Occupational therapist,mine said that an inflatable basin could be provided by them if I needed one to wash my hair.Or,when I was nursing,a washing up bowl,jug and plenty of towels was...
  18. Thread: deafness!

    by missmuffett
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    Thanks for replies ,guys! Katrina,what your dad...

    Thanks for replies ,guys!
    Katrina,what your dad describes ,that is exctly how it seems.Just as though i am underwater.It does make my hearing sometimes go fuzzy,but then days later it can be clear...
  19. Thread: deafness!

    by missmuffett
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    deafness!

    I have ALS and now have been told i have developed Bulbar ,but both my ears seem to be blocked.My hearing is muffled to say the least!I wonder if it is me personally needing my ears syringed...
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    Well,I am totally gobsmacked at all the wise...

    Well,I am totally gobsmacked at all the wise words and ideas from all you kind people who don't know me and have your own turmoil going on! I promise that I will try my utmost to not let you all down...
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    Thanks for your reply Barry,and I am grateful I...

    Thanks for your reply Barry,and I am grateful I am not acting strangely for someone in our position! My husband is my full time carer and I worry about him ,but he says he only can't cope when I...
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    Is it the time of year or just me?

    I had als diagnosed at the end of April 2015.I am now permanently in a wheelchair,my voice is slurred and husky and my swallow is weakened.
    I find tears streaming down my face at the moment...
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    Thanks for replying.I have been attending a...

    Thanks for replying.I have been attending a hospice since being diagnosed . It took 18 months of symptoms /various tests to confirm mnd and the symptoms have increased since.I now have swallowing...
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    speed of mnd since diagnosis

    Hi all,
    I was told i had mnd in May this year,it had taken 18 months to get this diagnosis .I will try to precis this 18 months as i think its the reason i have mnd,though my neurologist says not!...
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