Families affected by CJD have shared their stories in many ways. Here, we highlight articles, blogs, and other resources to help guide the CJD community.
Michelle is a freelance editor and writer based in Philadelphia, PA who describes her uncle's symptoms and progression of CJD in her essay "Tangles," published on HerStry. Here is an excerpt:
"Right around my uncle’s sixty-third birthday, in April 2013, he started to have trouble with his balance. We were celebrating his birthday at my parents’ house, and my mom noticed how he suddenly seemed to be walking “like an old man.” He began having difficulties at work and had a minor car accident. He went to several doctors and specialists and a rehabilitation facility, but no one knew what was going on. He got rapidly worse over the next few weeks with abilities vanishing each day. One day he could speak, the next day no more. One day he could make eye contact, the next day that was gone, too. It was horrifying, but we held on to hope that a diagnosis would show how to help him get better and we would get him back."
Joyce wrote a "Tiny Love Story" for the New York Times titled "Our Goodbye" about her husband.
"In November 2013, my husband Jon ran the New York City Marathon. In February 2014, he was hospitalized for a seizure. At 51, he discovered that he had Creutzfeldt-Jakob disease, a monstrous, degenerative brain disorder. Within a week, Jon lost the ability to move his limbs and speak. But on Valentine’s Day he was still able to hold my hand and form his lips into a kiss. This photo, taken by our son, Henry, captures the final page of our 28-year story, where we felt the warmth of each other’s skin, took in each other’s gaze and began our goodbye."
Brooke is a Research Grant Recipient whose father had sporadic CJD. She is fighting for a cure and wrote the article "How I learned to stop researching and live in the moment" for the Neurology Journal. Here is an excerpt:
"It is hard to feel powerless to help someone you love. It is even harder to accept that that there is no scientific plan, no experimental therapy, and indeed no answer for a disease with such a cruel prognosis. My father dedicated his life to the pursuit of knowledge, becoming a leader and a mentor to many in his field. Then, he contracted this rare, untreatable, and ultimately fatal condition. Anger began to set in. How could science fail him like this?"
In January 2012, Sherry Fabian (Sher), wife of Tom Fabian, had the idea to compile a Family Cookbook. She wanted to do it for the family and to keep her mind occupied and exercised in her struggle with mental acuity, Tom said. It was the beginning of a five year process. She compiled family recipes, recipes from great chefs (Julia, Martha, Ina, Emeril and others), recipes from various cooking magazines that fit her taste and recipes from friends (mostly the Coven). She diligently tried them all and would modify them to her standards. Sher succumbed to CJD in February 2018. Her husband Tom Fabian wrote this Preface to her cookbook, detailing her progression of the disease and their 47 years and 8 month marriage.
Kristen M. Coppola, PhD
Kristen's mother's CJD symptoms started when she noticed that her slippers kept dropping off her feet when she was sitting at a high-top table and then slowly other minor symptoms of confusion and losing balance began her interaction with a neurologist. After six weeks, her mother passed away in her home. Kristen, who is a PhD for the Department of Psychiatry, Rutgers, Robert Wood Johnson Medical School, Piscataway, New Jersey, wrote an opinion article titled "The Promise and Peril of the Patient Portal" in JAMA Neurology an American Medical Association Journal in November 2021. Read about her diagnostic experience, observations about the patient portal, and communication tips.
Mike wrote this song and created the video in memory of his wife of nearly 22 years, Rea Simpson, who passed on January 18, 2021 from CJD. He wrote the first couple of verses within a day or two of his wife's passing. The second verse "It's only been a day or two, perhaps a little more" is both literal, given when it was written and metaphorical in the sense that it always seems like just a day or two ago.