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    Hi Sue, My Gran qualified for CHC- her OT...

    Hi Sue,

    My Gran qualified for CHC- her OT sorted it all out, with the assistance of the social worker (we didn't even know about it before we received a letter saying it had been awarded).
    It...
  2. Hi Wailywoo, Didn't want to read and run, but...

    Hi Wailywoo,

    Didn't want to read and run, but I wanted to say that your husband will eventually stop being in denial about needing equipment etc. in a timely manner.

    My Gran was exactly the...
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    Hi Nunhead, Unfortunately not- I was at work...

    Hi Nunhead,

    Unfortunately not- I was at work when the respiratory specialist was there to give results- it's the kind of thing my Gran wouldn't think to remember to tell me about afterwards....
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    Hi Ellie, Thank you for everything you said...

    Hi Ellie,

    Thank you for everything you said above. I know what you mean RE giving me a breather from worrying about caring for her.

    RE breathing- she has a sleep test done last night and it's...
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    Hi Guys, Big updates regarding my Gran's...

    Hi Guys,

    Big updates regarding my Gran's situation. We had a terrible time with the care company that were doing 4 visits per day. Gran, understandably, didn't want to have to explain to a new...
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    Hi Panniertank and welcome to the forum :) My...

    Hi Panniertank and welcome to the forum :)

    My Grandma lives alone and has recently been diagnosed. She is now at the stage where she cannot do much for herself RE mobility. She has 4 carers come...
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    Hi Kayleigh, Unfortunately not! When we had...

    Hi Kayleigh,

    Unfortunately not! When we had the first multi-disciplinary meeting, I asked the neurologist why we hadn't been assigned one and he said that different areas of the country have...
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    Thank you both :D Greatly appreciate the help!...

    Thank you both :D
    Greatly appreciate the help! :)
  9. Replies
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    Care Question- How Much?

    Hi Everyone,

    I seem to be 'queen of asking questions' all the time, so apologies for another one!

    Many of you know it's my Grandma that has ALS. At the moment, she has lost most of the...
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    Thank you, Debbie- I am trying to tell myself to...

    Thank you, Debbie- I am trying to tell myself to spend some time with my partner, but I don't half get guilt-tripped for it after I've done it.

    Lynne- Good luck at the clinic. I hope you get on...
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    Hi MMW, I think you're right- I also think...

    Hi MMW,

    I think you're right- I also think she's feeling guilty about me having to look after her (though, clearly not that guilty or she'd take me up on my suggestion to get a full-time carer at...
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    Hi Lynne, When we were going through the long...

    Hi Lynne,

    When we were going through the long process of hospital appointments/GP visits etc. to try and find out why my Gran's foot wasn't 'working' correctly, she actually flipped out at me...
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    Hi Gillette/Dina, I think it's a bit more...

    Hi Gillette/Dina,

    I think it's a bit more than that. For example, I was round to do a few mini-jobs and wait in for the fire department to come round and fit a new fire alarm (requirement of...
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    Thank you, Debbie :) I sometimes don't feel...

    Thank you, Debbie :)
    I sometimes don't feel like my Gran feels so lucky to have me around- I feel very taken for granted recently, I must admit x
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    Hi Ellie, I think you're absolutely right....

    Hi Ellie,

    I think you're absolutely right. Guilt and shame are such driving factors in how we treat those around us and, of course, those feelings will be stronger when you have a closer...
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    Hi Andy, I have a tendency to over-analyse...

    Hi Andy,

    I have a tendency to over-analyse people's behaviour so I can see why people do the things they do and say the things they say, regardless of the situation :) I suppose it's quite a good...
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    Hi guys, Thank you for all of your advice :)...

    Hi guys,

    Thank you for all of your advice :)

    Kayleigh- I think she's more 'fed up of loads of people coming in' to her house all the time. I think she's so used to living alone and having her...
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    Thank you Kayleigh- very kind words and so...

    Thank you Kayleigh- very kind words and so greatly appreciated :)

    I do think we've got the support available to us- it just seems my Gran is unwilling to reach out for it, preferring to 'go it...
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    Hi Gillette, It was explained to us yesterday...

    Hi Gillette,

    It was explained to us yesterday that the OT/Physio Team are a replacement for the MND Team in our area of the country- in fairness, they have been brilliant at supporting us.

    Hi...
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    No To Peg and No To NIV

    Hi All,

    I attended the first MND clinic multi-disciplinary meeting with my Gran yesterday to check her over and see what her progression is like etc.
    Unfortunately, the neurologist said it's...
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    Hi All, Thank you all so much for your kind...

    Hi All,

    Thank you all so much for your kind words and supportive comments.
    The GP said that Gran can come to him for her prescriptions and any other 'normal' issues, but said she must liaise...
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    Not Coping Well

    Hi Everyone,

    I am posting here because I am hoping someone can give me some advice.
    My Gran (80 this year) was diagnosed with ALS last month, after showing symptoms for a year. She has drop foot...
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    Thank you all so much for your extremely kind and...

    Thank you all so much for your extremely kind and supportive words- what lovely people you are! :)

    Kayleigh- I've just dropped an email to the local Regional Care Development Adviser after...
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    Hi Ellie, Thank you- it's nice to be able to...

    Hi Ellie,

    Thank you- it's nice to be able to talk to others in the same boat about all of this.

    I want to use outside carers, but, as my Grandma doesn't seem to want to use them, I'm really...
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    Hi Terry, I think I was the only one who...

    Hi Terry,

    I think I was the only one who wasn't shocked by the diagnosis- I'd been trying to read up on her symptoms since she started having them and I came across MND only a month ago-...
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