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  1. Hello there, sorry things are tougher for you...

    Hello there, sorry things are tougher for you than they should be during a tough time.

    're the OT might it be useful to speak to their manager and ask for someone with experience of MND? Honestly...
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    I voted for you, hopefully you were the Andrew...

    I voted for you, hopefully you were the Andrew option!
    Will ask hubby to do the same.
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    The last time we went to Florida hubby got really...

    The last time we went to Florida hubby got really good insurance with Saga.
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    Thanks for the update, I was wondering how you...

    Thanks for the update, I was wondering how you got on.
    Best wishes for the future.
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    I'm so sorry to hear about your dear Mick. X

    I'm so sorry to hear about your dear Mick. X
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    Regarding the U.S. U.K. difference could that be...

    Regarding the U.S. U.K. difference could that be down to the cost of healthcare? A lot of people will have no insurance and limited access to health services.
  7. Thread: Taste

    by Music man's wife
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    7
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    533

    Not taste but hubby says he smells smoke and he...

    Not taste but hubby says he smells smoke and he feels his lungs are full of smoke. He can't take Riluzole as he has fibrosis of the lungs.
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    Oops meant manual. Had a Basil moment there! ...

    Oops meant manual. Had a Basil moment there!

    Well done with the car Ann. It will make things so much easier.
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    Lynne if you go for the automatic make sure it's...

    Lynne if you go for the automatic make sure it's a full automatic engine not an adapted one. That isn't a very good description but you get the hang of it.
    Our Peugeot WAV from Allied is the adapted...
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    I've no idea but could your GP help you make...

    I've no idea but could your GP help you make sense of it?
    Wishing you well.
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    Yes, thanks again. I didn't realise those rubber...

    Yes, thanks again. I didn't realise those rubber ones were so heavy!
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    Thanks for that Terry, I like the look of those...

    Thanks for that Terry, I like the look of those rubber ones.
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    Thanks all. Some really good advice here. I'll...

    Thanks all. Some really good advice here. I'll contact the council tomorrow and will also ask the OT for the kerb ramp, that could solve a lot of problems.
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    Just a little rant!

    Very frustrating today as we were going to have a trip out.
    A car is parked right on the pavement so we can't get the electric wheelchair out. Access to our bungalow is from the back along the...
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    I'm sorry to hear them things aren't sorted yet....

    I'm sorry to hear them things aren't sorted yet. Round our way the machines are managed by respiratory physiotherapists.
    I know they have tweaked hubbies machine so it doesn't alarm so often.
    Hope...
  16. Thread: house

    by Music man's wife
    Replies
    5
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    746

    We've had a ceiling hoist installed. It looked...

    We've had a ceiling hoist installed. It looked like they drilled a couple of holes in the ceiling and supported it on the joists.
    So as long as you're on the top floor it's doable without too much...
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    I can tell you how things worked for us. Even...

    I can tell you how things worked for us.
    Even before diagnosis it was apparent our three story house wasn't suitable for hubby. After an OT assessment it was confirmed our house couldn't be adapted...
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    Hello Lynne, we are staying near Great Yarmouth...

    Hello Lynne, we are staying near Great Yarmouth on a massive holiday park. It is adapted with ramp and wet room.
    We have been using Haven and their adapted caravans are nice but there is never a...
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    Just to add, we are paying £400+ for a one bed...

    Just to add, we are paying £400+ for a one bed chalet at the end of June. Not a nice modern chalet either one of those old fashioned affairs in a terrace. Doesn't even have WiFi!

    I wonder why it...
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    Ha! Could have written this myself today. I...

    Ha! Could have written this myself today. I phoned to find adapted accommodation with Hoseasons and I was quoted double for exactly the same as non adapted accommodation. I was checking the price...
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    Hello there, so sorry to hear about your...

    Hello there, so sorry to hear about your diagnosis. My husband was diagnosed last May, it took us a good 6 months to come to terms with.
    We have received excellent care and I hope you do to. Share...
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    Difficult situation Chrissie, maybe Grandma is...

    Difficult situation Chrissie, maybe Grandma is being critical as its her only way of keeping control of a situation that's out of her control.
    Everybody reacts in different ways, our daughter has...
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    Have you phoned the consultants secretary? It...

    Have you phoned the consultants secretary? It wouldn't harm to chase it up. Sometimes no news *is* good news however it can also be a torment.

    Take care.
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    Hello there Kitty, your story is similar to ours....

    Hello there Kitty, your story is similar to ours. Not the symptoms I hasten to add. My hubby has had terrible arthritis for years and suddenly lost all mobility. He had an MRI which showed nothing...
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    Sheila, my hubby has had severe rheumatoid...

    Sheila, my hubby has had severe rheumatoid arthritis for 30 years. When he was diagnosed with MND we asked if there was any connection we were told no.
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