My Dad, Gary Turner was a fun-loving man, who lived life to the fullest. He was very active at 68 years young, and never wanted to slow down. In early July 2022, Dad began having some symptoms he attributed to a change in one of his diabetes medications. Some of these symptoms included dizziness, headaches, minor confusion, unnoticed memory loss and a quick temper. Within several days he had a change in his gate when walking (leaning to the left). He was out of town at the time so he made an appointment with his doctor as soon as he returned home. He then started having uncontrollable tremors on the left side of his body as well as slurred/slowed speech. While waiting to see his doctor he decided to go ahead and go to the ER because what he was experiencing mimicked a stroke. Dad was admitted to the hospital and had several tests run including X-rays, several MRI's, CT Scan, and an EEG. All tests came back negative and after a week he was sent home with seizure medication to help with the tremors. Doctors could not tell us why this was happening but confirmed it was not a tumor, stroke, heart attack or seizures.
After two days at home his symptoms worsened. He was now using a walker to get around, still having tremors, with a new symptom of incontinence. He went to another ER at a different hospital. They admitted him and ran all the same tests. All of them came back negative again. The neurologist finally decided to do a spinal tap (lumbar puncture) on July 27th. Most of the basic things tested came back negative, he had no infections of the brain or spinal fluid. The doctors did expand the testing to include the RT-QuIC but were still waiting on results. On July 30th, they sent him home with the diagnosis of Neurological Functional Disorder. Basically, they still didn't know or have answers as to why he was experiencing these things, but said the brain was not controlling what the body does. They told us that he could get better with physical therapy and that he needed to lower his stress. We were somewhat relieved that they were telling us he would get better with time by working to retrain his brain, this gave us hope. He immediately scheduled a physical therapist to come to his house twice a week and he was determined to get better. He was going to do everything he could to retrain his brain to get back to living life as usual. With each passing day it took him longer and longer to get to another room in his house using his walker and the physical therapy didn't seem to be improving anything.
On August 11th, 2022 the last test results had come back from his spinal tap. The doctor called my parents and told them Dad's results has come back 99% positive for Cruezfeldt Jakob disease (CJD). My parents summoned all of us daughters and our families out to the house so they could tell us the diagnosis together. None of us had ever heard of this disease. We could not believe what we were hearing. We all went from having hope of recovery with some work, to not having any hope at all. Finding out there was no treatment or cure for this disease was devastating. The next day, Dad was no longer able to walk using a walker and we had to transition him to a wheelchair. From then on he needed help doing everything. His tremors now seemed to be triggered by touch, his vision on his left side became worse, and he was not sleeping good at night. He was very restless and often stared at the ceiling due to insomnia. He was losing a little more physical mobility each day yet remaining aware of what was happening to him. For the next 18 days, Dad took on the next and final journey of his life with bravery, dignity and grace.
This disease is very rare and progressed faster than any of us realized. Our hope is to honor his memory by walking each year in the Strides4CJD event to raise money and raise awareness to find treatment and a cure for other families that have loved ones with this invariable fatal disease.
Emily Smith
