Oxygen saturation

[Bergenser]

Based on our experiences the last few days, I wondered if low oxygen saturation is a common issue in PSP?My husband was taken to A&E in an ambulance on Monday - after ECG, blood tests and chest X-ray, it turned out that his chest pains were just muscular and that his heart and lungs were perfectly fine. However the ambulance crew gave him oxygen when they got here, because his oxygen was low (89-92%).

Today before his physio, we measured his oxygen saturation (at home) and again it was low. The physio did some deep breathing exercises with him and we could literally see the stats step up and eventually reach 100%. But resting in his chair again later today, the stats were back down to 92.

I'm obviously trying to get advice from the specialist nurse at the clinic, meanwhile I wondered if this is "normal for PSP"?

[Zerachiel]

Hi, I have some observations with my wife. I don't know how relevant they will be to your situation. A little background; my wife who has PSP has had 2 bouts of Aspirational Pneumonia this year, one was very bad with Oxygen saturation levels dropping to 86.

When levels are low lying down sitting up can improves levels.

Lifting the head (for those whose head drops down) helps open the airway.

Encouraging to breath through the mouth can also help as it takes less effort to breath.

Although the xray showed the lungs to be clear and therefore not aspirating, is he struggling with clearing his throat of phlegm, causing a restriction? If so a drug called Carbocisteine can help (prescription only)

Finally finger pulse Oxygen monitors can vary in accuracy, they can also show a false (low) reading if circulation is bad as in Raynauds Syndrome when it is cold.

[Bergenser in reply to Zerachiel]

Thank you, this is helpful to know. I think my husband is still able to clear phlegm from his throat with coughing and his dysphagia is at early stages. His breath can be shallow, so encouraging deep breaths through the mouth, while sitting up, is making a noticeable difference. My concerns are that he has starting snoring/breathing noisily while sleeping, especially towards the end of the night. Could it be sleep apnoea? I don't know if he is going to need treatment for his breathing - he has asthma but that is well controlled. Everything seems complex with PSP in the picture.

[Zerachiel in reply to Bergenser]

Listen carefully to his snoring, put your ear as close as you can to discern where the noise is coming from; is there a build in his throat overnight. Lie him on his side with a rolled up pillow against his back to prevent him rolling onto his back, I purchased a memory foam pillow that is firm and slightly shaped to position the head so any fluid will drain out the mouth.

[Topcatwoof in reply to Zerachiel]

I am very greatful for this reply. My husband diagnosed psp last year is constantly struggling with the inability to clear his throat of phlegm and tells me he's been sick. I am struggling with this and don't know what to do except pat his back rub his chest and squige his throat all at the same time. And show concern 😟. We have a lovely SLT . She is a very comprehensive worker. Like most of the the other people we only know our poorly person and kindof know what seems best. I got specsavers to do a home visit this week and felt very proud of myself. Anyway I'll get in touch with Gp again and suggest maybe Carbocisteine for his problems. Thanks again. ... I would sign this but have forgotten my made up name. Lol 😆.

[David750]

I am so sorry to hear of your worries. I did not have any problem like this with my wife (PSP), thankfully. Everyone is so different in the problems they bring. I am pleased your physio has found a way of remedying, but it adds just another job to your full time caring schedule, if you have to see to it regularly 🙏