Hi, Sorry if I have posted something similar before but just wondering if anyone has experience of MSA and breath holding. My mum has always done this a bit and usually has certain times in the day where she is worse than others but this last week has been doing it a lot in fact on and off all day. She breathes very heavy taking hard breathes in and then holds her breath for what seems like an age before she takes a gasp of air. She is getting quite distressed and it's horrible and worrying to watch. Have spoken to the MSA nurses and they have said it sounds like anxiety and reassured me that her body won't let her hold her breath indefintely but just wondered if anyone else has experience of this and if they have any ideas on how we can help her with this.
Thank you
Kathryn x
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Hello Kathryn. I can’t add any more to what Paul and Sue said a few weeks ago. I don’t think her body will allow her to hold her breath to the point of damage and so the issue to manage us her’s (and your) distress.
When are you next due to see a neurologist, s/he may be able to help.
Thank you, my mum is no longer under a neurologist I don't know why it's seems ridiculous because the gps have no idea. I think because she is now bed bound and so cannot attend outpatients appointments they discharged her but I feel the doctors need to be liaising with the neurologist to get an idea of how to manage her symptoms. Instead all they same to do is threaten to admit her. Which is not what we want.
Sorry the whole situation is so frustrating. I have managed to get her referred to a palliative care nurse so hoping she may offer some help.
Hi, we had the same issue with dad a few weeks ago when he had a chest infection. It was very distressing. He seems to be more regular with his breathing now but as always with this condition, we never know what is around the corner. I hope you manage to get some support and reassurance with this.
Thank you, mum is just recovering from a chest infection as well so maybe her symptoms are just worse because she has been so unwell. Just find it so frustrating that not one professional involved in mum's care has any idea about the condition and how to manage her symptoms.
Hello again Kathryn. In Worcestershire we have a specialist nurse who goes under the snappy job title of Specialist Nurse for Complex Neurology & Rehabilitation. She visits us at home (about every six months but will respond when asked) and has an excellent understanding of MSA and related conditions. In the past she has been effective in banging the drum and getting Jackie the specialist support we need.
Perhaps there’s a similar position where you live.
I wish there was. We don't seem to be getting anywhere. The community nurse has agreed to speak with one of the MSA trust nurses and get some advice so at least that's something. Just feel that because of their lack of knowledge of the condition they just concentrate on everyday issues such as continence care and ignore the rest. Feels like a constant fight to get someone to listen!
So sorry to hear this. Where I live the district nurses at gp surgery are able to call palliative team on the phone any day for advice. If this isn't possible, I hope your referral to the palliative team comes soon. Should generally only take a few days. If not, you can get their number from your hospital switchboard and call them-tell them it's a breathing issue. That should hopefully get a fast response. The palliative nurse should have access to a team of consultants who can help. Even if ultimately it's only to provide a gentle medicine to regulate the breathing/anxiety or something. The palliative consultants should be able to access neurology if they feel its required. I hope it goes OK. Keep up the phone campaign at them. Ps my dad is no longer able to see the neurologist too, but she is available on the phone for any new symptoms. If you have had a good relationship with yours, it may be possible to arrange something like this. Get hold of their secretary through the switchboard and tell them you're desperate if you need to. Best of luck!! xK
Thank you for your advice. I will definitely give the neurologist a ring if we don't get anywhere with the palliative care nurse. The palliative care nurse is actually a Macmillan nurse so not sure how much knowledge she will have either but we will see. (Do you ever feel like banging your head against the wall)
Geoff has had episodes of this when he has been more unwell. It is annoying to listen to and distressing for the sufferer however the anxiety does make it worse. Hopefully the palliative care team will get involved and decide if there is any benefit from trying medication. You need the palliative care team alongside you now if the Neurologist has decided that they have nothing else to offer. Neurologists aren’t really the experts in Managing these practical issues, they would only be making sure that others were looking after your mum. I know that it is difficult but if you could be relaxed around her when she is having an episode, not ignoring it but being calm and confident, then that should communicate itself and she will pick that up and maybe be less anxious.
Hi Diane, thank you for your help we do try to stay calm and reassure her when she is struggling. It's just not nice to watch and always wish there was more I could do to help her. This condition is horrendous but what amazes me is my mum's fight she just gets on with it. I've no idea how she does it I really don't. Thank you xx
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help please
Lost my mom to MSA
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