laurenv
New member
- Joined
- Jan 10, 2016
- Messages
- 4
- Reason
- Loved one DX
- Diagnosis
- 09/2015
- Country
- Aus
- State
- NSW
- City
- Sydney
Hello! This is my first post on here and i have been looking for anywhere to ask questions / get advice on ways to help my mum. My mum is 61 years old and has eventually been diagnosed with flail arm syndrome which is a rare type of MND. As it seems to be, it took quite a while to get to this stage of getting a diagnosis. She had been having trouble with her arms - feeling weak, having trouble raising her arms since early 2015. around June / July 2015 she returned home to Australia from living in Malaysia and went to see her DR who sent her off for a whole lot of tests to be done. the first specialist she went to didn't really do any tests and basically just told her point blank she has MND and 2-3 years to live. The new specialist has been amazing and told her to ignore what this other DR said and after about a year of different tests, she has been diagnosed with flail arm variant. I've been searching and searching for information on flail arm and i seem to be coming across the same information. At the moment, she has become very anxious and has her good days where she's positive but they seem to be few and far in between. She has lost most use of her left arm now and she can still just use her right arm enough to feed herself but that is about it.
she has an appointment this week to have her breathing testing as she keeps saying that she can't breath and over the past 2 months, I've noticed that she does everything she can to avoid leaving the house however i'm unsure if this is anxiety causing similar to a panic attack? she was seeing a psychologist for a few months after she first saw the first, not nice specialist for anxiety who gave her lots of coping mechanisms and seemed to be good for her however she has now stopped going and we've tried to get her to go back however she doesn't want it and i know we can't make her go. she needs to be ready.
Does anyone have any advice or ways in which we can help her? we might be going around things the wrong way and perhaps there is a different way we can try things. All we want to do is help and do everything we can for her to help.
thanks
Lauren
she has an appointment this week to have her breathing testing as she keeps saying that she can't breath and over the past 2 months, I've noticed that she does everything she can to avoid leaving the house however i'm unsure if this is anxiety causing similar to a panic attack? she was seeing a psychologist for a few months after she first saw the first, not nice specialist for anxiety who gave her lots of coping mechanisms and seemed to be good for her however she has now stopped going and we've tried to get her to go back however she doesn't want it and i know we can't make her go. she needs to be ready.
Does anyone have any advice or ways in which we can help her? we might be going around things the wrong way and perhaps there is a different way we can try things. All we want to do is help and do everything we can for her to help.
thanks
Lauren