I am looking for anyone that may haved cared for patients with end-stage parasupranuclear palsy. I have been frustrated at the minimal amount of patient education material re: end-stage progession and symptoms that I have been able to find and share.
Aug 25, '08
I cared for one, but not end-stage. It very closely mimics, and is sometimes misdiagnosed as, Parkinson's.
Aug 25, '08
I have taken care of a couple of patient's with end-stage PSP. I think the most difficult symptoms for families and patients to deal with are the loss of vision and the inability to handle swallowing or secretions. Have you tried a google search using PSP and Parkinson's together? I found multiple citations using those two search terms.
Aug 26, '08
progressive supra nuclear palsy as others have noted is often mis- diagnosed can be present for many years in many of the cases I have been invoved in there has been issues with family putting pressure on the pt to go the feeding tube route ,It is not unusual for there to be little or no mental deterioration turning the body into a prison not unlike solitary confinement and totally dependent on others for all ones needs there is some good material out as others have noted . Good luck it is not one of my favorite hospice DX's
Sep 11, '08
You can find a wealth of information at www.psp.org
. For direct access to caregivers experienced with this disease, as well as a few PSP patients themselves, I strongly suggest you try their forum which is at forum.psp.org . The forum is searchable and there have been discussions on virtually all aspects of PSP. I've been a participant there for years.
Feb 28, '09
My brother died almost 2 years ago from PSP. It was so sad to see him in that condition, especially knowing how very intelligent he was. One thing we did find helpful was to use a neck massager/vibrator on him; it helped to move his saliva and allowed him to drool. This prevented strangulation, since he could not swallow.
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