PSP Association
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Hard breathing

My father is again in the hospital:-( He was supposed to get discharged tomorrow, but over the weeeked he started to breath very hard. His oxygen level is good. But his pulse is around 100-102 (normally high 80's) and he breathes very hard. I can see that he is using his neck muscles to breath. Ha anybody experienced it? Why did the doctors do? It seems like here everybody is blaming aspiration and they are saying that there is not much they can do. I don't want him to go through another round on heavy IV antibiotics. He's been on it since November.

7 Replies

Hi Mogi2002

This is tough for you I am sure.

Just commenting as a mental health practitioner (rtrd) ... so I know little... but the medical model is the medical model!

Have they done tests for pneumonia?

That seems to be what they are saying with aspiration. No point in the antibiotics unless they have a diagnosis.

I was talking with a Hospice nurse last week and they mentioned a medication which eases breathing. I'm sorry I didn't catch the name. Would that be appropriate?

I don't know how far down the PSP/CBD path your Dad is and I don't know his wishes.

This is hard to say. I do not want to upset you, but Pneumonia is called the 'Old Persons Friend' in medical circles. It gives a pain free release. Is he that far down the road yet?

Sorry to give you so mnay questions. This must be a distressing time and a bit more.

It sounds to me that the medics need to be a bit more open with you and you maybe need to clarify the situation more with them.

It's tough Mogi... I've been through this with my mother. Knowing the right thing to do on your own is not possible... Do talk to the medics.

Warmly and with much feeling for you both.



Hi Kevin,

Thank you for your reply. My Dad was hospitalized 4 times since December. 2 times for aspiration pneumonia. We had to do the PEG in December. He was doing well until then. Each hospital stay is making him weaker. This time he was hospitalized after 1 week of staying home. He got c diff. And we had to take him to ER because he needed IV. He was getting better and on Saturday he started to breath very hard. Yesterday was little better and today again worse. The RN was talking to me and my sister today and she didn't have good prognosis. I just hope that he can get better. He was doing so well at home.


Hi Mogy 2002

You are both quite remarkable in your ongoing battles.

I do wish you both the very best in this enormous struggle.

In admiration.


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He also has so much saliva. Suction doesn't help much. He is not opening his mouth. It's so heart breaking.



Hi Monika

Yes, PSP is desperately heart breaking.

Yet we and our loved ones get up and and fight for the best of it every day.

Good luck today!


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Hi my wife had episodes of what I described as deep panting for a couple of hours at a time normally it was cleared by a heavy coughing session and a lump of mucus brought up. Though disturbing, by massaging (rubbing patting) her back it eased the release of the tickle which was causing the panting. She could only indicate with a smile that we were helping.

I hope the panting passes, Tim


Thank you Tim. You are very lucky she can cough it up. My dad cannot. We are trying to suction it, however he doesn't open his mouth much and it is very difficult. I am on my way to see him now. Hopefully he is better. Thank you for your support.


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