My mum has PSP

Hi I am Angeline Amy and my mum who is now 79yo was diagnosed with PSP in 2013 after a series of falls and hospitalization , her neurologist finally ruled out parkinsons, and diagnosed PSP in early 2013. From then on it has been a tough ride. She is now unable to speak . Since February this year we had to admit her to an extended care hospital after managing 4 years from home. She is now on feeding tube , and urine catheter. It has been heartbreaking and painful to see my mum go through what she has been going through. Others cannot understand what this disease does to patients and their families, and I am tired trying to explain what we are going through. I miss my mum as she is fading away.

8 Replies

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  • Dear AngelineAmy, I have no words to comfort you in this sad time, except to say that you are not alone. I am very sorry for you and your family and your mother. I wish you love and peace, and may memories of happier times come to help you through. Sarah

  • Tq EasternCedar for your kind words

  • ] I AGREE WITH EASTERNCEDAR] I WAS DIAGNOSED IN 2010 AND AM S ITLL HE ERE AGRD NEARLY 72[ALTHOUGH MY TYPING IS TERRIBLE UNLESS I AM HELPED.LOL LOL JIKLL

    C XXXX

  • Big hugs and love to you, Jill! I love seeing your smiling face come up - never mind typos!

  • Hi Angeline. Very similar story - my mother is also 79 years old diagnosed with CBD in 2015 after her preceding Dx of Parkinson’s in 2013. ( I actually saw first signs in 2004 - just didn’t understand what was going on back then.). Many falls and hospitalizations as well. She has been in a care facility since January of this year. Though she can still talk ( with great difficulty ), she has become fully bedridden recently. No catheter or feeding tube yet, but given we’ve been dealing with this for the better part of 5-6years, am sure that’s not too far behind.

  • Dear Ettavb sorry to learn of your mother's condition and thanks for letting me know that our stories are somewhat similar. I am really glad to be able to learn from the posts here. Wishing your family peace and strength.

  • It is awful I know. My mother was diagnosed two years ago and she's still at home but is in such a bad state now. She gets depressed, she has a terrible cough, can barely walk, and it takes such a toll on all of us. Stay strong though as it won't last forever and she wouldn't want you to give everything up for her!

  • Hi CharlieSe you are right. It will not last forever but the pain of seeing her deteriorate this way is ripping my heart out. We are all going through this in various stages. To me It feels like a freefall in a broken elevator. Looking back there are so many what ifs. I still beat myself up looking back and wonder what else I could have done better to cushion her from the falls etc endless questions...

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