Patient Comments: Progressive Supranuclear Palsy - Later Symptoms

Do you have a friend or relative with PSP? Please discuss the later symptoms associated with the disease.

Comment from: Bertha, 75 or over Male (Caregiver) Published: October 30

I am a 63 year old woman with a medical background. My father has progressive supranuclear palsy (PSP). I think the biggest hurdle for us was to get a proper diagnosis. He stands with great difficulty, and walks short distances with assistance. Last week he fell so he is no longer allowed to get up and move around unassisted. His body is stiff, he has a slight tremor. He is unable to look up, his voice sounds slurred when he first wakes up. He cannot engage in conversation but I believe he enjoys being in the middle of it. He can feed himself and does so with relish. Dad is highly intelligent and he can still respond to questions relating to his field. He moved to an assisted care facility last week. The progression of his PSP has been rapid over the past 12 months. There are small triumphs to celebrate; three steps further than the day before. We try to make each day special. A ride in the car to look at the fall leaves, movie and popcorn in his room. Dominoes or a large puzzle in the evening. Some days are good, others are not; we take them one at a time.

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Comment from: evelyn, 75 or over Female (Caregiver) Published: March 31

My husband of 26 years passed away on March 10th, 2014 of this terrible disease PSP. No medications helped him. He fought a hard fight. He finally took a nose dive in the middle of February. The last month was terrible! He was in so much pain. He turned stiff and just quit eating or drinking anything. He lost his voice, he was so weak, and he could not sit in a wheelchair without sliding out. He cried for help; it was awful. I miss him so much but so glad he is out of pain! Hope they find a cure.

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Comment from: Harpo, 75 or over Female (Caregiver) Published: October 18

My mum passed away 7 months ago. She had been diagnosed with Parkinson's approximately 5 years ago. However she had aspirated a year ago but pulled through. Within 3 months she had lost all ability to walk, etc. and needed to be hoisted and her speech and ability to swallow had almost gone. When I questioned the staff in her nursing home about her medications they said she was discharged from the hospital but wasn't on any medication. Mom aspirated again, the hospital was confronted about medications and we were told she would have got worse anyway. Mum became very ill with infection and was in the hospital for 11 weeks. Mum wanted a feeding tube fitted so they did that. Within a week she got sepsis and within 10 days she passed away. My Mum lived in Dublin and I in the UK. I would fly home every month to look after her and my family would be with her every day so we noticed the changes very quickly. My biggest regret was I wasn't there the night she passed. As regards Parkinson's medications I feel the 6 months mum was without her medications, the disease was rapid.

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Comment from: Robert, 65-74 Male (Caregiver) Published: August 23

My father now is experiencing for getting how to walk freezes in mid stride take up to 2 minutes or better for him to remember how to walk also his eyes are getting worse by the day. He laughs out loud for no reason hardly at all.

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