PSP Association
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End Stages

Charles' pain level has increased a great deal. His jaws are closing up and we will not insert a feeding tube. Don't know how long we have but he is still eating and is so strong. He is fighting so hard and I'm proud of him. But when the jaws clamp shut, what then?

Thanks for your input in advance.

Cuttercat

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Aww I'm so saddened to read this Cuttercat and am equally sorry because I have no advice!! Huge huge hugs x

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Love and hugs to you both

Helen xxx

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Your story touched m y heart am so sorry to hang in there

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For pain, morphine liquid in a syringe between his lips. It can be absorbed by the skin inside his cheek, doesn't need to get past his teeth or be swallowed.

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yes Ec ...B was on that for a couple of months....It actually is a bronchiodilator as well,, helps the breathing ! who knew!

AVB

How you doin, babydoll?

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Just maintaining until they get the pain under control. Breaks my heart when he begs for morphine

Cuttercat

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Don't let him have to beg for it....you tell the dr what that man needs. When I first gave it to B....I was in denial that he needed it and afraid of him getting addicted....honest....afraid of him getting addicted....? but I soon saw how much it relieved him and though I did not have to adjust the dose, I finally came to grips with how much it helped....

AVB

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Have you tried cannabis drops. My Barry's stiff body has relaxed a bit since I have been giving him 1 drop am and pm 🙏💛

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Lord I lift Cuttercat up to you and ask that you give her a renewed strength and peace that she can be there for her husband at this time of life.we look to you oh Lord for help. Amen.

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Precious 💛🙏

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Sorry Cuttercat I'm not able to provide any help but sending you lots of love and hugs and keeping you in my prayers. xxx

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I'm so sorry that your going through this. I so wish I had something constructive to say that would help. I'm sure you'll get an answer soon. Thinking of you.

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CC I am sorry. You both are so brave and that charles is still fighting says something for his strength without PSP...a warrior....

I always massaged B's jaws ...he had just the opposite effect in that his mouth would hang open....but a muscle not in the right position is in pain....so massage on.....if you can get behind his chair or bed you can more easily get to both sides of the jaw. and since your there, might as well massage the rest of the face and neck!

I'm prayin for both of yours comfort

((HUGS))

AVB

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I will!

CT

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A Fentanyl patch can be a wonderful thing! Is your husband on hospice?

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Dear Cuttercat

Pain relieving patches may be the way forward or even a syringe driver. Hospice/palliative care specialists the experts in this area. I am sure there is a solution to this unlike so many of the other PSP challenges.

Sending love and hugs

Tippy xx

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Get medical help. Doctors might not know about PSP, but they all understand about pain relief.

Thinking of you. Sending big hug and much love.

Lots of love

Anne

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Hospice is great for pain meds. They are sending long-acting. But when jaws close up we will go to patch.

Thanks and love,

Cuttercat

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Like your Charles my Barry is still so strong. He is fighting this dreadful thing with all his might. While I wait for the next stage ....

My prayers are with you dear Cuttercat. 💛🙏

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My thoughts exactly! It's so hard to wait. Time keeps giong on and I can't stop that. I'll return prayers to you and Barry.

Cuttercat

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💛🙏

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So sorry, Cuttercat. I hope you have it sorted now.

Big hug from Jean xx

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This is so sad. I am very sorry he has to go through that. This darn disease! 😥

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