It was the fall of 2021 that my family became concerned about my mom after she started exhibiting dementia like symptoms yet also odd behaviors and not acting like herself. We became increasingly worried as these behaviors only increased. Among them were forgetting how to do simple tasks like making coffee and buckling her seatbelt. She started to wear her clothes inside out and backwards. She had trouble writing and spelling. She was an amazing cook and suddenly stopped cooking. After an MRI and lumbar puncture in January 2022 and another MRI in April we had no answers. After researching her symptoms online I learned about CJD and prion diseases and discovered the National Prion Disease Pathology Surveillance Center. I learned about their MRI interpretation program and eagerly sent both MRI's to them, hoping for some direction. The results came back reporting her MRI's looked highly suggestive of CJD. Even though it wasn't an official diagnosis, with this report and her symptoms matching, we felt like we could put a name to what was happening to her. But knowing there is no cure for CJD and it's 100% fatal we were heartbroken and hoping this wasn't it.
By October 2022, approximately one year after we began noticing symptoms, my dad could no longer care for my mom in their home and she went into a memory care center. Very quickly she lost the ability to walk and her speech declined to random words before losing her speech entirely. She experienced hallucinations and seizures among many other debilitating symptoms.
One of the special things about my mom is that she had a very special place in her heart for babies and children. She truly loved any and all babies and after her illness took over and she wasn't ''there" anymore, everytime we showed her a picture of a baby, up until her last few months, she would amazingly light up with a big smile. And nothing else brought this reaction, or any reaction at all. In the darkness of her illness this was truly a sweet thing to witness.
CJD is officially diagnosed by a brain autopsy. My mom was officially diagnosed after her death in October 2023 at the age of 66, over 2 years after symptoms started. It was heart wrenching watching what this horrible disease did to my mom. Please consider supporting this fundraiser and the CJD Foundation as they raise awareness, support families affected by this disease, and most importantly their vital role in finding a cure!
Amee Angles Team Captain $1,982.50
Mikayla Fueshko Team Captain $497.50
Erik Angles