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Star Go, as soon as you can go. My mum died last Thursday morning. She was at home with my Dad. Whilst her fvc had been assessed the week before at 25% (she lost 5% a month), she wasn't yet on Bipap, and had no outwardly obvious breathing issues and no signs of carbon dioxide build up...

My mum died this morning. I spent the day with her and dad yesterday - she was fine. My sister rang at 7 last night and said mum was unwell - temperature and not so responsive. She then called at 9 to say she had the temp down to normal, but mums breathing was laboured. At 4 am she said I...

Re: Feeling unsupported - some other thoughts Hi Sayen, I am relatively new here. My mum was diagnosed last October and now can't eat, talk or move any of her lower body. I can relate to much of your story. I have been devastated and have watched my brother go on a 3 month trip around...

I am grateful for your guidance. I asked a lot of questions and discovered that it's my dad who has been the obstacle to NIV. It seems he has either been ill informed or not in a position to take in the information, if it has been provided, about Bipap. I think he has resisted the suggestion...

Hi Tillie. I don't know about MIPS and Meps. Yes, Mum sleeps semi upright at night. Dad positions her - she can't move herself. Generally her breathing seems okay - we don't obviously notice her struggling to breathe. I have been checking for headaches on waking. She has reported this a few...

Hi Tillie We went to the Royal Brisbane Hospital initially but now go to the clinic at the PA Hospital. I thought that at this appointment ventilation would be discussed. I didn't get to go, but my sister went and she said they didn't mention Bipap, just said they would monitor symptoms. Kind...

Thank you all for your kindness. I have decided to take my leave to help dad out, so I start next Monday and for six weeks will be able to give him a break on a daily basis while the kids are at school. Mum went to the MND clinic today. Her lung function is down to 25% - it was 55% at the end...

Hello I wish I had found you all sooner. On 21 October last year (2014) my sister and I took my mum to a (another) specialist in Sydney. She had been treated for 2 years for CIDP. She stopped work and she and Dad put their lives on hold basically to "get mum better". She had IVIG, plasma...