Info please

[demlac]

Hi does anyone else’s loved one have sleep deprivation/apnea.

They have given hubby a sleep study while he is in hosp and results show that he stops breathing on average 60 times within an hour!!! Geez!!!

He won’t wear sleep mask to help with his breathing while sleeping and I’m not going to force it on him.

Docs have said it’s due to muscle wastage..

He has no swallow

Needs a cough assist machine etc, the list just keeps getting longer..

I’m so bloody tired today just feel like hiding in a hole, but of course I can’t!!!

[Ratcliffe]

I can’t offer too much with regard to a PSP sufferer having sleep apnoea, although I do have it myself and use a machine every night.

David in the final year did develop a habit of snorting a bit when he was asleep, which might be a mild sort of thing, but certainly never had any tests or anything done.

[JA10]

Hi, my Mum has sleep apnea, has had for some years before her PSP diagnosis. She doesn't love the mask, but wears it as she knows it is important to, her blood oxygen levels are not good if she doesn't have it every night.

I recently took her to her review appointment and they took a long time ensuring that she had the correct size mask and that is was adjusted correctly. So that is my only suggestion to help; to check if the mask is a good fit, tight enough to be air tight especially near the eyes, but not so tight it is uncomfortable. If he still won't wear it then I don't know, maybe talk to your doctor.

Julie

[Tippyleaf]

Another battle!

My hubby had sleep apnea diagnosed at the same time as PSP. He took ages to get used to the CPAP mask and we tried 3 different ones eventually settling on a nose mask. It makes a difference to his nightmares which were prob caused by low levels of oxygen.

My hubby is still restless and wakes at least 2 hourly often more but I do think without the CPAP it would be worse.

Worth persisting if you can - it may help you both to sleep.

Sending lots of love and a big hug from one sleep deprived to another!

Tippy

[Javan]

I reckon the old bag has a touch of this, but it is not noticeable when you are asleep yourself. I would think it is more common than people think.

[Hiking13]

Hi My husband had all of what you describe, he also had a tracheostomy and we had to deep suction throughout the day and night. PSP is truly horrible. My lovely Steve lost his battle with PSP on 26th Dec and I am still exhausted from it all, it literally saps the energy from you trying to keep up with the endless list of issues. My thoughts go out to you I can really relate to how you are feeling. Sending lots of love.

Love Sarahxxx

[Hiking13]

PS My husband didn’t have the CPAP overnight as he also had Stage 2 respiratory failure so if we gave him too much oxygen his carbon dioxide levels rose too high, it was a delicate balancing act as if we didn’t give him oxygen then his SATs dropped, it was the build up of carbon dioxide and his inability to get rid of it that eventually lead to the end of the road for him.