Now a CPAP Machine?

Hi all my lovely Mother is deteriorating rapidly. We are still in the dilemma of PEG feeding and now her respiratory system is going downhill. We are now in the realms of a CPAP machine. We care for her at home but is it increasingly more difficult. Does anyone here have any experience of using this machine at night? This is such a dreadful situation for all of us...

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  • Dear Martina, what is a CPAP machine ? 💛🙏

  • Machine with mask to assist person with their breathing. Person still has to do breathing effort but machine just helps give a stronger breath in and out. Gives continuous positive pressure as you breath in and out, to "splint" open the airways to let oxygen in and carbon dioxide out, and reduce symptoms of carbon dioxide retention such as headaches, and drowsiness.

  • Thank you for your reply. Wishing you strength as you cope with the next step. Much love, Althea

  • Where are you, Martina? Do you have access to home hospice services? It sounds like you need more help. I wish I had something useful to offer you. I've only had friends use a CPAP to prevent snoring. Does your mother suffer from sleep apnea? Does she tolerate the machine? Hang on. Peace, ec

  • Hi, my Mum was using a CPAP machine for sleep apnea for years before her PSP diagnosis. It is not a problem for her to use as she is so used to it. She has carers to help several times a day, they help her on with the mask once she is in bed and then off in the morning. Only one recent problem when she decided that the mask was uncomfortable during the night and took it off, the machine was then very noisy so she tried to reach across to the bedside table to switch it off. Unfortunately the PSP got the better of her balance and she fell out of bed, her thumb was sticking out ready to press the off button and she ended up with a broken thumb. She looked like she was thumbing a lift for the next 6 weeks while it was in plaster! Otherwise the CPAP has helped her.

  • My hubby was diagnosed with sleep apnea at the same time as his initial Parkinson Plus diagnosis, PSP diagnosis came 6 maths later. He uses the CPAP at night and daytime naps. helps his sleep ( though still a challenge). and more importantly reduces the dreadful nightmares he used to have when his brain was deprived of oxygen.

    Modern CPAP machines really simple to use it will be set up with appropriate settings, reviewed and updated as necessary. There is literally an on/off button. It reduces risk of chest infections too. At first the mask will feel strange you can get face or nasal pillows, whichever suits.

    Hope it goes well

    Tippy

  • In the States we also have masks you can put in your mouth (like a mouth guard). It she has apnea, the deprivation of oxygen can cause numerous problems (drowsiness, dementia, heart problems, and nightmares, etc) so is probably worth considering. Good luck and stay strong.

  • I use a CPAP machine daily... have been for nearly 4 years now. It has proven beneficial for me. As my PSP progresses, I still have some sleep disturbances because of muscle contractions etc., but I feel I'm better with it than without it.

  • Thank you all for your really helpful comments. It seems that the CPAP machine is really helpful.

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