Paul's journey began in February 2024 when he started experiencing muscle twitches throughout his body. By August 2024, he developed persistent dizziness and struggled to maintain his balance. Despite undergoing an MRI, doctors found his brain appeared normal and attributed the symptoms to inner ear issues. Over the next six months, his condition worsened—he became hypersensitive to noise, startled easily, and suffered from anxiety, paranoia, and recurring nightmares.
In late February 2025, Paul underwent a second MRI, leading to the suspicion of Creutzfeldt-Jakob Disease (CJD). On March 27, his diagnosis was confirmed through a spinal tap (RT-QuiC test). Doctors informed us that his case was slow-progressing, suggesting he might live beyond 6–9 months. We held onto hope and planned to enroll him in a clinical trial in September.
As the months passed, Paul's condition deteriorated further. He required a walker, struggled with stairs and getting up from furniture, and began experiencing hallucinations, focal seizures, and increased agitation. By May, dementia had accelerated rapidly. On May 30, Paul entered hospice care, where his health declined daily. By Tuesday, June 3, 2025he was asleep and passed away peacefully, surrounded by his loved ones on Sunday, June 8, 2025.
Losing Paul has been devastating. Watching him go from an active, capable person to fading away week by week was an excruciating experience. I deeply hope for a cure so that no family has to endure the pain of losing a loved one in this way. Paul's legacy will live on in the lives he touched, and I know he would want others to be spared from this terrible disease. Please consider donating to support the fight against CJD. Thank you for your kindness and generosity.
Ella Dickens $101.00
Julie Meninno $100.00
Lisa Theriault $100.00