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: Shrikant Puranik, 65-74 Male (Caregiver) Published: September 01

My friend is suffering from PSP (progressive supranuclear palsy) since 2012. At present he is unable to walk and talk while swallows food with difficulty and cannot focus his eyes. His face has become expressionless. In 2012 all his faculties were properly working and he used to drive his car to his factory. In the last five years slow deterioration has taken place. University of California is conducting clinical trials for two drugs but their progress is very slow and I don't know if the drug will be made available in the market before it is too late.

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Comment from: didi, 55-64 Male (Caregiver) Published: May 08

I am caring for a man 60 years old who suffers from PSP (progressive supranuclear palsy) since diagnosed 6 1/2 years ago. He lost lots of weight and is fed through the tube direct to his stomach for the main protein in the last 3 months. He isn't able to move his eyes anymore and lots of time he has stiffness through the whole body with slight trembling in hands and feet and while he has that he sweats enormously that drenches the whole bed completely. He can't move his head left or right anymore. Although he is fed by the tube he still eats food that is turned into thick liquid, and he enjoys it. I have never had to take care of a person with this illness and I am learning progressively as his sickness is progressing very fast since I started in 2014. It hurts to see how the cramp like stiffness comes and goes and I don't know how to ease it except to guide him into imagining another world where he can be happy to be at those time. I would like to know more how to help him ease through his days as I will care for him till his last day.

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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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