My husband David moans most of the night or makes very loud choking noises. He is not in pain so he says. He has never learned to prevent himself from pulling off his catheter at least once a night. This has been our lives for two years. His illness started in 2004. Is anyone extremely fatigued and feeling as though PSP is taking more than one life? Do you ever feel like you are so tired that you are going to die too. I feel like that today. Please pray that he sleeps for the next full week during the night.
Thank you and with love
Judy
Written by
judy1962
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Judy - my heart goes out to you, I hope you are getting practical help from either Social Services , carers and your own Dr. I had the same trouble with Frank and his catheter but now he has a pubic one fitted and that seemed to put an end to to one problem. I am sure there will be more answers that will be more practical and a greater help to you than my few words, I do so hope you catch up on your rest.
You must be exhausted!! Does David take anything to help him sleep? Mum takes half a clonazepam, which works a treat! As for the choking sounds - it could be that his own saliva is collecting at the back of his throat. How many pillows does he use? You may find that elevating his head a little will help with that. As for the catherter problem I suggest you go back to your GP as repeated pulling out of a catheter can cause trauma to the urethra. Whatever you do you must get help, you cannot keep going if you are exhausted - maybe David could go for a period of respite care to allow you to "recharge" your batteries.
With PSP you have to live with that. I too do not sleep but I do not snore. But I cough from bottom of my stomach.It makes a huge sound and every one looks me. It is very embarrassing to my wife.My eyes closes as if I was fallen asleep. But i do not sleep. Someone wrote to me it is because the muscles have become weak. i am 72 and doctor has diagnosed me as having PSP about 9 months back.
my husband is 89 and diagnosed 2008. He does snore, but also has the same coughing problems as you and exactly the same with his eyes, never sure if he is asleep or awake, always needs to clear his throat a lot.
my wife had suffered from the snoring etc and she is in her 7th year since diagnosis - every 3 months she has botox injections into her muscles over her shoulders and her muscles at the base of her head this has eliminated the night problems of snoring choking and she now sleeps for 6 to 8 hours without wake up much to everyone's relief. The botox is administered at the local hospital and the dosage is high at 400 to 600 cc per treatment every 3 months but it does the trick. This also corrected the problem of her muscle contraction causing her head to aim skyward.
I agree with Macd, get your neurologist to give your hubby some botox injections, they really helped my grandad. Also if he has trouble or discomfort moving at night and gets dead legs etc, try a positive pressure mattress too, you may be able to get the OT to source one.
Oh Judy, I can so empathise with you. I have my own health problems and would so like to have a few nights unbroken sleep and, yes it does pull you down. I have given up trying to do much housework etc and just try to take cat naps when ever I can. I am lucky that I have good carers and good professional support. I hope you have got this sorted. Don't be reticent, get Social Services to review your husband's care plan and make sure that they include your needs as well.
We applied to the local hospice for respite care and have been given a week every three months. This is the only place where I can feel OK about letting him be cared for away from home. Do check this out. I had to get the GP to refer him, but once that was done the staff have made great efforts to continue being supportive and phone on a regular basis. They are so caring and friendly. If you haven't already done so do give this a try.
I have also learnt to accept help from my friends- such a hard task when you have been fiercely independent all your life.
I have found that if my mother listens to the radio at night, it reduces her groaning. She has a small, handheld portable radio and listens with earphones, so it doesn't create a noise for other people. Maybe she gets the same comfort from the incoming sound (voices, she likes talk radio), that she otherwise gets from vocalising? It's not a perfect solution, but it works sometimes.
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CBD-How do you cope?
Dear cares, do you think there is a connection between PSP and sleep apnea.
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