PSP Association
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New to PSP and to this site-not so new to PSP symptoms

My family and I are new to this diagnosis of PSP. Unfortunately, not so new to the symptoms. I have read quite a few posts on here about the progression of PSP and have found them helpful for my weary mind. I would like to share my story in hopes of helping someone else as you all have helped me. My 75 year old father was diagnosed with PSP on Monday of this week. Our journey began two and a half years ago with a Urinary Tract Infection that turned into SEPSIS. Upon discharge from the hospital he was deemed unable to live on his own. I took him into my home to care for him. He never rebounded after this episode. Upon questioning this lack of recovery I was told he more than likely had a stroke at some point and wound not regain cognitive abilities, steady gate, and speech. After two years of caring for him, I became greatly discouraged. The whole point of me caring for him in my home instead of placing him in a nursing home was that I felt it would be better for him. You know, to be with family, more individualized care. This past June we decided it was best for him to be in the nursing home. He had been falling on a weekly basis and would not wait for assistance to help him walk. He ended up with a brain bleed as a result of one of his falls. This was the point we decided he needed to be in a nursing home. I felt quite defeated as I failed to help him get better or at least maintain what he had. He did not want to go and begged me not to send him. The guilt was overwhelming. Trying to care for an aging parent and my own family, STRESS is an understatement. After a few months in the nursing home, I received a phone call last Saturday that led to this new diagnosis. Dad had collapsed with spaghetti legs while the aid was walking him down to lunch. Once they got him to the cafeteria he began to put food into his mouth but could not figure out how to chew or swallow so the food spilled back out. They suspected a UTI or another stroke and sent him to the hospital for further testing. Testing revealed he has never had a stroke and possibly had a UTI. When the Neurologist saw him the next morning he said Parkinson's. By Monday morning the diagnosis was PSP. I had never heard of this devil of a disease but as I researched it, it made perfect sense. Every single symptom fit him to a tee. I am not looking forward to what lies ahead for him. However, I am relieved to know what has been breaking away a piece of him these last few years. We have, as I have seen others post on here, been looking back at different moments in recent years trying to figure out just when this actually started. My dad was a healthy fit man until this demon started to pick away at him. I am currently balancing emotions of anger and sadness. When my dad retired 7 years ago, my mom's heart disease landed them from one health scare to another instead of traveling across the country like they always planned. He stayed by her bedside in and out of the hospital for the next year. Never complaining about the cards she had been dealt, always holding her hand and trying to lift her spirits. She passed a year later, shortly after is when we can start piecing together early symptoms of his PSP.

13 Replies
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Heartbreaking story, but so like the experience of many of us. I am deeply sorry for your parents and you. At least there is love, and that's more than many folks ever have. Sending you more, Ec

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Such a sad story, don’t you just hate psp? Welcome to the best place ever, everyone so lovely always there to help you along. Yvonne xxxxx

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We are all here for you.

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Welcome to this site-it has incredible people on it-and always willing to help and give encouragement and give love, with no strings attached! Good luck yo your Dad, you and all the family. Love, Mary B

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Extremely sad,sorry that you and your loved one are on this dreadful journey,wealth of information here.

Dee in Bc

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It’s a very cruel disease and to watch them suffer in front of you is heartbreaking. Take care x

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Hi tlovins,

thanks for sharing.

Hug. courage and luck.

Free yourself from guilt. You did everything you could do against a disease that starts as a ghost and develops like a guerrilla fighter.

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Extremely well said. Ugghhh. Miserable rotten disease

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Well said, "starts as a ghost and develops like a guerrilla fighter."

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Sorry to hear that you too had to have this story. My husband is 75 and was only diagnosed because we both kept saying 'something is wrong and getting worse'. Like your Dad he had been an extremely healthy and fit person. He falls or get down in the garden and cannot get up almost daily. Rather than get him up I look for something he can pull himself up with. I shall continue this while he can still walk. Nowadays he has more frequent experiences of legs giving away. You are right it is a very difficult disease to deal with. Do not feel guilty about the decisions you have to make. Whatever they are they are the right decisions for you and your family situation. Take care, I hope your journey with PSP is not too difficult.

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Totally sympathise!

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Oh it's just so cruel, after all your dear dad had been through with your mum. It is heart breaking to see the once fit, healthy and sharp thinking person you adore slowly be chipped away. You sound like you did a remarkable job this far, and all not knowing what was happening. Wishing you more strength for what is to come xx

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Hello tlovins

You have had so much the bear.

Is he staying in the nursing home now?

All I can do is send you both my deep sympathy and a hope that you will yet be able to share warm and even happy moments.

Warmly

Kevin

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