Hi, my husband was diagnosed on 28th May and my once full of life, funny, brilliant man is now already a shell of his former self. He has lost such a lot of weight, is unable to walk unaided and struggles to raise his arms. Very recently he has at times been unable to feed himself. It is so sad seeing him deteriorate so quickly.
He has an NIV which he uses during the night and also if he goes for a sleep after lunch. I was just wondering if anybody has the problem of the mask blowing loudly? Some nights I struggle to try stop this and have to remove it and adjust it several times. The mask is fit snug against his face.
This is so frustrating (for us both) as there have been many nights he would have slept through had it not been for this.
It is so hard seeing him struggle daily with the everyday things we take for granted without him now suffering through the night not being able to rest and get a good nights sleep.
He recently had a seizure and they suspected it was due to carbon dioxide levels, although this hasn't been confirmed yet. The respiratory nurse came out and adjusted the NIV settings and it seems to have been worse since then. The nurse said this shouldn’t have made any difference and thinks it is a positional problem.
If anybody has experienced the same and has any advice I would be very grateful.
Thank you
He has an NIV which he uses during the night and also if he goes for a sleep after lunch. I was just wondering if anybody has the problem of the mask blowing loudly? Some nights I struggle to try stop this and have to remove it and adjust it several times. The mask is fit snug against his face.
This is so frustrating (for us both) as there have been many nights he would have slept through had it not been for this.
It is so hard seeing him struggle daily with the everyday things we take for granted without him now suffering through the night not being able to rest and get a good nights sleep.
He recently had a seizure and they suspected it was due to carbon dioxide levels, although this hasn't been confirmed yet. The respiratory nurse came out and adjusted the NIV settings and it seems to have been worse since then. The nurse said this shouldn’t have made any difference and thinks it is a positional problem.
If anybody has experienced the same and has any advice I would be very grateful.
Thank you
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