PSP has taken my sister: My Sister never... - PSP Association

PSP Association

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PSP has taken my sister

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My Sister never gave up. She went to exercise room everyday and was always out of bed in the activities room. Playing checkers and the nurses, aids and even her roommate liked her. She kept her sense of humor even thought she could not talk much she could laugh. I was lucky enough to see her a few weeks ago. She lived in Rhode Island and I live in San Diego. We (my other sister-who lives in Michigan met me there for the week) took her out everyday and kept her as long as we were allowed. Until we had to bring her back for bed. I think she had a good time we facetimed with the rest of the family. She got to laugh and enjoy herself. We fattened her up to 86 pounds from 83 but after we left she lost the weight again. She went for a check up with a new doctor a neurologist. He took her off the meds and said they weren't doing her any good. Then she couldn't eat or swallow so the demise happened within the week. It was the choking and not being able to swallow that did her in.

Her daughter was by her side. We were there by phone to say our goodbyes.

It is allows tough at the end when you can't do anything but watch.

Nov. 22, 2021 was her last day on earth. She got this disease when she was about 63 she started to slur a bit. We thought she had a stroke. Misdiagnosed with Parkinson's at first then later it was PSP.

Thank you for this site. I was always hoping for a miracle that they would figure out what causes this disease. Or how to help the chocking. God Bless you all and thank you for the information you passed along.

19 Replies

Love & understanding from SE London, England at this sad time for your family.

It sounds as if your sister was a fighter until the very end. I’m so glad you were able to have fun, quality time with her and she knew how much she was loved.

My Dad is in his last weeks of this awful disease 🥲.

T xx

So sorry for you loss. Good to have those special memories of your lovely week together Love Tippy

A big hug.Luis

So sorry for your loss. But happy that you got to spend that time with her - precious memories. Xx

Thinking of you and your family xxx

Sending you peace and love during this difficult time. Sounds like you made happy memories together. All the best to you and your family.

Sending gentle hugs... Granni B

So very sorry for your loss. Hugs and prayers.


Good morning. Prayers from LI, New York for you and your family. It’s heart breaking on so many levels to lose anyone special to this awful disease. Take heart in knowing that you were there and made your sister laugh when she needed you. I’m sorry that you have joined many who have experienced seeing loved ones lost to PSP.

You are not alone- write on this site and express yourself fully in the coming days, months. As much as we all knew the end was near- we all prayed for a miracle. God has brought your sister home to him- so know she is safe now from any pain or limitations.

I'm sorry. It is heartwarming to know you and your other sister were able to spend this time with your sister. My husband has PSP and though he is British, we have been living in the U.S. until a few months ago when I brought my husband back to the UK specifically so he could be with his sister, his last remaining close family. I don't regret making the trip but now we are navigating higher needs, end of life care and as his primary caretaker, I am bewildered about what the future has in store for us. He is 66 and has been having symptoms for about 5 years now. Thank you for sharing your sister's story with us.

Hugs and peace to you and your family. Sally

That visit you were able to make with her and your other sister had to have been the best medicine for her. I also have two sisters and it is exactly what we would have done. I don’t know any words of wisdom to help ease your pain, but know you did the very best for her. Prayers for your comfort.

I am so sorry. She was truly a PSP Warrior.

Thinking of you and your family at this sad and tender time. Big hugs, Purrlie

It is good that you have the good memories of time spent together. Sending warm hugs to you and your family.

So sorry for your loss. May you find peace in the days to follow and joy in the memories of good times and the love you shared. HUGS!!

God bless to you and your family. How wonderful that you had that week with her. What special memories to hold. Big hug AliBee xx

Thinking of you, so sorry for your loss. Sending love and hugs to you and your family xx

Thinking of you and your family. It’s good to make memorable times that mean so much. My father has PSP and I see the huge difference every week. Take care god blessxxx

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