Raising Awareness for CJD: A Wife's Story of Love, Loss, and Grief

A Devastating Diagnosis

• 💔 Lisa Pontius shares the heartbreaking story of her husband Matt, who was diagnosed with Creutzfeldt-Jakob disease (CJD), a rare and fatal neurodegenerative prion disease.
• 💡 Matt's initial symptoms, including sinus pressure, balance issues, brain fog, and fatigue, were initially attributed to a lingering virus.
• ⚠️ His condition rapidly worsened, leading to significant walking and balance problems, loss of energy and strength, and speech that didn't make sense, prompting an emergency room visit.
• 🔬 After inconclusive initial tests, including a spinal tap, Matt was eventually diagnosed with CJD just 11 days before his passing.

Understanding CJD

• 🧠 CJD is classified as a prion disease, occurring when normal brain proteins fold incorrectly, creating abnormal proteins (prions) that cause brain tissue to die.
• 📉 The disease leads to dementia, loss of muscle control, and ultimately death, with no known treatment or cure.
• ⚠️ The Mayo Clinic reports that CJD affects one to two cases per million people annually, and its cause remains unknown, adding to its terrifying nature.

A Husband's Comfort and a Wife's Grief

• 🫂 Despite his deteriorating condition, Matt comforted Lisa during their diagnosis, calling the situation a "nightmare" while hugging her.
• 😔 Lisa describes the profound shock and disbelief of receiving the terminal diagnosis, especially for a young, healthy individual.
• 💔 Matt passed away on August 19th, 2025, at the age of 43, leaving behind Lisa and their three young children.

Navigating Life After Loss

• 😥 Lisa is navigating the raw stages of grief, describing it as waves that become less frequent but unpredictable, rather than a wound that heals.
• ⚖️ She is focused on being strong for her children, ages 11, nine, and four, finding the task of telling them about their father's passing more difficult than his death itself.
• 🏠 The physical and emotional toll of grief is significant, manifesting as hair loss, sleeplessness, panic, and a feeling of disorientation, making home feel unfamiliar.
• 🌟 Lisa is working to maintain normalcy for her children, committed to being okay for them despite the immense responsibility of solo parenting.

Raising Awareness and Finding Peace

• 🗣️ Lisa hopes that by sharing Matt's story, she can raise awareness for CJD, as funding often follows public knowledge.
• 🕊️ She seeks a sense of peace in the new year and encourages others to lean on support systems, be vulnerable, and not grieve alone.
• 🌐 Resources for CJD information can be found at cjdfoundation.org.