The Pittsburgh Strides event is in memory of, and support for all those who have been impacted by CJD.
In July 2016, Shannon, Michelle and Helen Golden began to notice that their dad/husband, Pat, was repeating things, and there were changes in his memory. The symptoms were small at first: he started making notes for himself and leaving them on the kitchen counter, asking where to send the water bill, or forgetting how to balance the checkbook. By the end of the month, these changes were becoming more noticeable and frightening.
During the first week of August, Pat saw his primary care physician who diagnosed him with depression. Two days later, he spent the day in the St. Clair Hospital ER to do more tests and see a different PCP, psychiatrist, and neurologist but wasn’t any closer to figuring out what was wrong. Throughout the month of August, Pat experienced advancing symptoms: confusion, hallucinations, aggression, increased anxiety, personality changes, and the loss of balance, appetite, and the ability to care for himself.
“His speech became unclear, and he rubbed his eyes a lot which made us think his vision was declining. He sometimes would act in violent ways and make verbal threats towards us. Other times, my dad would exhibit child-like behaviors. My dad was no longer himself, and our hearts were breaking into millions of pieces,” said Michelle Golden.
Helen became his 24/7 caregiver and went to various doctors to try to get answers to what was going on. His cognitive abilities were rapidly declining and things that he had known how to do all of his life became foreign to him.
On September 5, Pat was taken to Allegheny General Hospital and given Keppra which put him into a coma for the rest of his life. Eight days later her was diagnosed with a rare, neurodegenerative disease called Creutzfeldt-Jakob Disease. On October 12, 13 days short of turning 58, he passed away.
CJD is a rare neurodegenerative disease that has no treatment or cure. The incidence of CJD is approximately one and half to two people per million per population per year. In the United States this translates to approximately 550-600 new cases per year. But it is well known that CJD is very difficult to diagnose, leading to speculation that this incidence may be incorrect.
Watching a loved one live with CJD makes a person feel absolutely helpless. Michelle, Shannon and Helen now host a Strides for CJD event each year to keep Pat’s memory alive. Strides for CJD, is an annual walk/run that families affected host all across the country the first two weekends of October.
“This disease didn't allow him to fight for his life, so in hosting Strides for CJD, we are fighting in honor of my dad and all others who lost their lives to his horrific disease,” said Michelle Golden. “Strides for CJD allows us to connect with other families affected by this disease, in addition to raising awareness and funds to support CJD research.”