PSP Progressive Supranuclear Palsy Eye Issues

What are some Eye issues with PSP?

Below is a bit about our journey and experience with eye issues and PSP.

My mom complained about dizziness from the beginning. We realized later it was her eyes that were not moving or working as they should, that was causing it. She described it as many different things—-blurred vision, double vision, spins, dizziness....this was her number one issue. 24/7 dizziness causing balance and mobility issues. Her eyes watered 24/7 and all she wanted was for me to find something to fix it. 💔 We tried EVERYTHING! Some helped (short term and not perfect) and some did not.

1 hour of exercises each day including eye tracking helped. Atropine oral drops under tongue helped with watering eyes. Ultimately she lost most of her vision and had to move her head to try and see as her eyes became weak. There would be some good days but it rapidly progressed the last few months.
We tried prism glasses but her eyes were changing so fast a new script was needed weekly. She use to play games on her iPad but screens started making her eyes worse. And light sensitivity became an issue. (Sunglasses with sides helped indoor and out)
We never found anything that improved it for long so I ended up following her around 24/7 to prevent falls and help her keep as much mobility as possible. When I wasn’t there 3 times, she had a bad fall each time. 💔Such a cruel disease.
Also her ability to look up or down was almost 100% gone. When I would walk with her I would have to say step or bump as she couldn’t see at her feet.
Walking with them is frowned upon as if they fall they can take you down with them...but mom couldn’t use the walker much as she would be to dizzy to control it. She was smaller than me and we never fell! You make do with what you can ❤️🙏 in the end we were using a wheelchair when it became too unsafe.

Hope it may help someone❤️
Here is a LINK to a great Article I found on the topic by Brain Support Network.
Keep fighting and have Hope!

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3 comments

Christine,
While PSP is rare and typically not considered hereditary, there have been instances where multiple family members are affected. Given your husband’s symptoms and family history, it would be wise to discuss these concerns with a doctor. They can provide a comprehensive assessment and guidance tailored to his specific situation.
Laura

Laura Louizos

My husband was adopted but we’ve recently found his birth mother and been told that she died from PSP. Though we read that PSP is rarely inherited, we also see that little is known about it.
My husband has recently been suddenly suffering from episodes which he describes as ‘dizziness’, ‘blurred vision’, ‘lack of physical balance – my fall over sideways’, and, on asking him to look down without moving his head, he said immediately ‘I feel sick’.
He also seems to get really stressed concentrating on any subject.
He’s 70 next year.
I’m wondering if I should raise alarm bells in the medical service about possible PSP?

Christine

Laura, thank you for posting your journey with your mother’s eye issues. My father has PSP and is experiencing blurred and double visions, watery eyes and sensitivity to light. Such a impact to his quality of life. I didn’t realize the prescription for prism glasses could need to change to frequently. Good to know.

Amy S

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