NYT Story on PSP

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NYT Story on PSP

Postby Robin » Mon Oct 24, 2016 4:00 pm

I was so surprised to see this story from Thursday's New York Times about PSP.

The story is about a Filipina named Betty whose "unexplained falls" began at the age of 72. An eye test with a neurologist plus the falls led to a diagnosis of PSP.

The article mentions "Last Dance at the Savoy," a beautiful new book about PSP by actress Kathryn Leigh Scott, whom I had the pleasure to meet at the February 2016 CurePSP conference in San Mateo. Kathryn Leigh Scott says about PSP: "The biggest takeaway is to have patience. PSP has no treatment, no cure. It’s important to enjoy every precious moment."

The article describes PSP as follows:

"The condition can present with multiple symptoms: loss of balance, swallowing problems, slurred speech, an inability to walk or talk. Difficulty moving the eyes, especially up and down, and poor bladder control are also common. Depression, memory and thinking problems or loss of inhibition can also occur. All get worse with time."

Five years later, Betty can no longer walk or talk.

I've copied a link to the article below.



www.nytimes.com/2016/10/20/well/live/af ... nosis.html

The Falls Were Bad. The Diagnosis Was Worse.
By Sylvia Rupani-Smith
New York Times
Oct. 20, 2016
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Joined: Fri Feb 20, 2004 2:32 am
Location: USA - Northern CA

Re: NYT Story on PSP

Postby zymurgy » Wed Oct 26, 2016 1:07 pm

Although I agree that patience is needed when dealing with a PSP patient, other things are equally, if not more, important. Physical (e.g.learning how to pick a 160 lb. man off the floor or simply transferring from bed to wheelchair, there is no care-giver training), mental (24/7 caregiving does drain one's brain, trying to anticipate what, if anything, one might need ), and emotional strength (e.g.knowing everything is now on your shoulders alone) , resources (financial, watching it drain), time (to get everything done). I was caught quite off-guard with the diagnosis, totally unprepared, being told he will likely be dead in 5-7 years and there was nothing I could do. Sorry for this...Today is a particularly bad day. And we take one day at a time.
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Re: NYT Story on PSP

Postby myownwoman » Wed Oct 26, 2016 1:34 pm

zymurgy: you totally nailed it. So sorry you're having a bad day. May tomorrow be better. (( ))
(I wish I could give you a real hug... because I know how bad you need it.)

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