Our Mother with PSP

Hello. My sisters and I were searching for a support group and so glad that I stumbled upon this. Our mother was diagnosed with PSP in March after several years of being misdiagnosed with Alzheimer's. She started falling many years ago and had some memory deficits. After my step father passed away in 2012, her symptoms became more pronounced and her memory got worse. She had trouble with dry eyes and constant "eye infections". Her voice slowly became quiet and hoarse. She is unable to walk and we had to place her in a nursing facility 2 years ago due to frequent falls and debility. We tried keeping her at home as long as we could and wish we could bring her back home now. Last November she underwent a swallow study due to coughing and hoarseness. This is when the Speech Therapist mentioned that he thought she had Parkinson's. Shortly after this we started noticing that her eyes would not focus and she could not look downward. We took her to a neurologist 4 months ago and he diagnosed her with PSP within 5 minutes of seeing her. We were all so shocked that what we thought was Alzheimer's was something completely different. Her dementia was not progressing like Alzheimer's though and she still knew all of us. Over the past month, my mom has really declined. She drools all the time and hardly can open her eyes. She mumbles and is so difficult to understand most of the time which is so disheartening. Yesterday her fever was high and we thought we were losing her. She is on pureed foods with thickened liquids and her appetite is failing as well. This is such a horrific disease and I hate seeing my mom have to suffer like this anymore. She has been through enough tragedy throughout her life and just pray that she does not have to suffer much longer. Thank you for listening.

6 Replies

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  • Well first of all welcome to the best site ever, always someone to pick you up and make you feel better, got a problem, someone will always be there for you. My husband was diagnosed in 2014, been a long struggle since then, coughing and choking is the worse. Sending you a big hug. Yvonne xxxx

  • I'm sorry that you have had to join this forum. PSP truly is awful. By the sounds of it your mum seems to be at the same stage as mine, she was also misdiagnosed, the eyes were the final clue. It is incredibly difficult to watch a parent slowly drift away. You will always get support and advice from people on the forum.

  • Welcome but sorry you had to join !

    We understand the feelings you are struggling with.

    love, Jean x

  • Sad story Josie but so typical of lots on here. Choking is frightening for the sufferer and those watching on. My hubby has a peg now and absolutely nothing orally because of the risk of aspiration. He is at home and we have CHC. Good luck and God bless.

    Marie

  • Hallo, Josie,

    I'm so sorry about your mum and really feel for you and your sisters. I lost my mum a couple of years ago to PSP and can completely understand how horrible and distressing it is for you to witness your mum's illness.

    I wish you all every strength to get through the time ahead and hope you all get some comfort from seeing it through together. Thinking about you and and sending you my best wishes.

    Amanda.

  • Welcome and I'm so sorry your mum has this cruel disease. Nanny857xx

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