My Dad, Gary Turner was a fun-loving man, who lived life to the fullest. He was very active as 68 years young, and never wanted to slow down. In early July 2022, Dad began having som 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 mimiked 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 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 as well as incontinence. He went to another ER at a different hospital. They admitted him and ran all the same tests. All of them came back negativ again. Ther 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 to lower his stress. We cried, but were relieved that they were telling us he would get better with time and work retraining the 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. Each 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 (lumbar puncture). The doctor called my parents and told them Dad's results had come back 99% positive for Cruezfeldt Jakob disease (CJD). My parents summoned all of us daughters and our familyes out to their 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. What was even more devastating was how quickly my dad went down hill. The next day, dad was no longer able to walk using a walker and we had to transition him to a wheelchair. From there on he needed help doing everything. Losing a little more mobility each day. 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 with love ones affected by this horrific disease.
Stephanie Ackley