Four Months
It took only four months for Sporadic Creutzfeldt-Jakob disease to take our Mom from us.
It began with vertigo and fatigue, two treatable conditions that didn’t go away with therapy or medication. About two months later, she started having memory lapses and weakness. Then, exactly two months before she passed, she fell and never walked independently again.
We desperately searched for an explanation. She had multiple MRIs, but no evidence of a stroke. She was moved to rehabilitation, where she developed recurrent urinary tract infections as well as issues with high ammonia and low potassium. Those problems were treated, but the underlying cause of the vertigo, weakness, and mental changes remained unknown.
A neurologist considered Parkinson’s disease, but an EEG could not be scheduled for nearly two months. Meanwhile, we held on to moments that made us believe she might recover. She laughed with us, occasionally asked and answered questions with confidence, scrapped her cooked broccoli and carrots off her plate (because she never liked cooked broccoli and carrots), and remained a force to be reckoned with.
It was surreal, sometimes almost funny, and at other times heartbreaking. She spoke about loved ones who had died as though they were still alive. She gave us and the nursing staff advice about insurance policies and coverage, although she had been retired for seven years. She was fading, yet pieces of the woman we had always known were still fighting their way through.
We didn’t learn that CJD was a possibility until about two weeks before she died, when she returned to the hospital due to respiratory distress and a fever. At that time, doctors recommended a spinal tap for an RT-QuIC test and transfer to a tertiary care facility.
At Allegheny General Hospital in Pittsburgh, she received continuous EEG monitoring, but the results were inconclusive. A third MRI, however, showed significant changes from the previous month that strongly suggested Sporadic CJD.
A few days later, the RT-QuIC results confirmed the diagnosis: Sporadic Creutzfeldt-Jakob disease.
Only a few days after that, Mom died.
The timeline still feels impossible. There was so little time to understand what was happening, adjust to the changes or say goodbye.
We held onto hope in those brief moments when we recognized she was still with us: through her humor, her strong opinions, her clear sense of knowing what she liked and disliked. It was those moments when we thought, There she is. There’s Mom.
That was the cruelty of CJD. It didn’t take her all at once. It took pieces of her—her memory, her strength, her ability to walk and her ability to make sense of the world—until it took her life.
We kept hoping the next test would bring an answer and a treatment. Instead, the answer was a disease most of us had never heard of.
But even as CJD took her from us, Mom remained present in flashes of humor, memory and determination. We already knew she was one in a million. Being diagnosed with Sporadic CJD confirmed it. We love and miss you so much, Mom!