This August 8, 2000 document on the phases/stages of progressive supranuclear palsy (PSP) was written by two caregivers who were members of the now-defunct Johns Hopkins PSP Listserv. Many neurological diseases, such as Alzheimer’s and Parkinson’s, have “stages.” So this was an attempt by two PSP caregivers to have the same guide posts for the PSP community.
“Challenging the Odds: forget the prognosis” (Barry Bittman, MD)
Barry Bittman, MD
Back in 2004 when my father was diagnosed with progressive supranuclear palsy, I joined some online support groups related to PSP. met an incredible woman named Aletta, who had been diagnosed in the mid-80s with multiple system atrophy (though she prefers the old term Shy Drager Syndrome).
WebMD: Caregiver Grief Triggers Mixed Emotions
credit: WebMD
Here’s an article on the topic of anticipatory grief. The article points out that the grief may come with the initial diagnosis of a loved one with a debilitating condition.
Dudley Moore’s symptoms of progressive supranuclear palsy (link to 20/20 interview)
credit: ABC
On November 19, 1999, actor Dudley Moore was interviewed by Barbara Walter on ABC’s 20/20.
The focus of the interview was Dudley Moore’s symptoms of progressive supranuclear palsy. He died in 2002.
“Caregiving at Life’s End” By Johanna Turner
In this 2004, article Johanna Turner discusses the challenging of caregiving at the end of a loved one’s life.
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