Update on my mom

[enidoreilley]

I just wanted to quick update on my mom, who was misdiagnosed 5 years ago with Alzheimers. She was given a revised diagnosis of progressive supranuclear palsy (PSP), another neurodegenerative disease. I originally posted about it here https://www.alsforums.com/community/threads/mom-has-been-wheelchair-bound-for-2-years-suspect-misdiagnosis.47836/ but responses were closed on it.

There are so many things that have made this diagnosis process more complicated - most notably her severe depression and her existing benign brain tumors. But PSP is notoriously difficult to diagnose

I have been here as a health anxiety person - and I am on the other side of that now. Please please please - live your life and do not try to make something out of nothing. My mother's symptoms were not twitches or a feeling of weakness. My mom stopped being able to move her left leg. She stopped being able to speak. What is more - and what I am still struggling with - is that a diagnosis doesn't even change anything. We still just need to keep her healthy and comfortable as much as possible and spend as much quality time with her as possible, for what time she has left.

 

[Nikki J]

I am sorry about your mother but glad you have an answer. I had a relative with PSP she went through an initial diagnosis of AD then a long time with Parkinson’s before they got it right

good luck

 

[lgelb]

You have the marching orders right, Enid. Your mom is lucky to have you.

Best,
Laurie