My mother was brilliant and it seemed like instantly she could not remember simple events. Yet, she still could talk, walk, laugh, and play things off. What was happening? Was she just being silly? It was bizarre behavior. My mother was insisting that she was still working when indeed she had not reported to her office In months. The Dr.s ran every test you can think of and everything come back normal. She could even out smart the memory test they give in the Dr. office. only to get home and she would not remember even being at the doctors office. Explaining this to the Doctor's was stressful. Was I being heard? Did they believe me? The neurologist answer was that my mother had dementia and developing quickly for unknown reason. Nothing made sense. My mother everyday forgot more and more of something she knew just the day before. She began to forget that it was her house, her birthday, SS #, a conversation 2min prior, the city she lived in, then US her daughters! She did not know us. This is over 7 days! It did not make sense! Who do you turn to? Who even understands? You are absolutely going insane. Then the neurologist calls and tells us that the last test from my mother spinal tap test came in and he needed us to come to his office. Mad Cow is what he said and he shook his head and said there is zero survival rate and 1year expectancy. I didn't even know he tested this, I didn't even know it existed in humans? I asked him why did he test this? The neurologist said "I believed you, but I did not think it would be this". I was given the test results with CJD phone number and contact the foundation. Shortly my mother become unstable walking, could not finish a sentence, to not walking at all, not swallowing, not living. It's horrible, it's fast, it's a disease that is out there that must be spoken about, must be made aware of. Especially in the neurology and medical field. If it was not for this neurologist ordering this test, my mother would have passed away without us having any idea why this happened. How many people died with this disease and did not know?
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Strides for CJD is an annual walk/run to raise awareness of Creutzfeldt-Jakob Disease (CJD), a rare neurodegenerative disease that has no treatment or cure. Through this event, anyone -- anywhere -- can pay tribute to their loved ones and raise funds for the CJD Foundation, a 501(c)(3) organization.
Funds raised support our programs including:
Our 24/7 helpline, support groups, conference, and other family programs throughout the year.
Research grants to help scientists make important discoveries and bring us closer to a cure.
Medical education to help raise awareness and understanding of prion disease.
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