Worrying day!

[Courgettegrower]

Ian had a very odd time yesterday I wondered if anybody else has come across this.He had lunch and was having a dessert and as sometimes happens he had a little bit of a choking attack but it was unusual in that he was making the most awful noises with each mouthful.

These noises then carried on after he had finished his lunch and his breathing was about three times as fast as mine. He also reckoned that he was very cold and his whole body was stiff with a lot of shoulder pain. His blood pressure was 154/104 and his pulse was 93. I gave him a paracetamol for the shoulder pain and turn the fire on. Incidentally the Oxy meter which I have just purchased didn’t work on him at all although it did on me. I felt like he was having a panic attack rather than anything else so I just tried to calm him down and encourage deeper slower breathing and eventually after about an hour he basically returned to normal. Blood pressure went right down 94/75 then 80/63 and pulse down to 68.

I just wondered if I should’ve called 999 if decisions are so difficult to make.

[Diane831]

These are such difficult episodes aren’t they. Geoff had some odd episodes, perhaps not identical but similar. I think you made great decisions in the situation. The pulse oximetry probably didn’t work because his fingers were cold. He might have more similar incidents or it might never happen again! I wouldn’t have rung an ambulance in that situation but you might make a note of the symptoms and contact the MSA Trust nurse and check with them.

[Hellebelle]

Hi, Dad used to have episodes like this but without the low blood pressure and coldness. It was connected to his lack of swallowing. The sounds he made were quite distressing and loud. As he declined a feeding tube, these episodes became more and more frequent.

It might be worth the Speech Therapist doing a swallowing assessment and giving you some advice.

[Hidden]

Hello, I second that. My feeling is that as carers we know our relatives individual presentations of MSA so well, that we can act with a degree of confidence in balancing risks. Staying at home may well have provided a better environment for recovery. Hopefully the MSA nurses can help. Or at least help you explore strategies for future incidents. Some areas have 'hospital at home' services for example, that can provide hospital level practitioners for a few days at a time. Good luck! Kx

[chester2107]

i think if you had called 999 they would have taken him into hospital , which nobody wants at the moment really , or yes speak to msa nurses as at least they seem to know more about the condition, very scary though xx

[Courgettegrower]

Thanks everybody for your replies it seems as though you think the same way as I do about people going into hospital. I’m beginning to suspect that we need more input into the best way to deal with Msa at this stage, fortunately Ian has a hospice respite break at the end of this month which will give us a good chance to discuss everything that seems to be happening a little more often nowadays.I think the biggest stress factor is the responsibility of doing the right thing.

[Annietutt in reply to Courgettegrower]

Hi. It is all very worrying isn’t it? We feel so responsible as carers and are under pressure to do the right thing. I think you were right to trust your instincts.Good luck, Anne.

[Fatwallet]

Hi really sorry to hear this. This has happened to my husband , Phil. I am certain this is due to him aspirating his foods. We are waiting for a feeding tube to be fitted this month so hoping that things will improve. I feel your pain, stay strong and carry on the best you can . Take care x