Editor’s Note: We published this story almost three years ago. Another case of CJD just struck a person in Maine in late 2016. Doctor’s can’t determine the difference between CJD and Alzheimer’s. Few autopsies are ever done on either. Both are prion diseases. At most, CJD is just a more aggressive version of prion disease than Alzheimer’s. Since CJD is highly transmissible, and since doctors are only guessing when diagnosing one versus the other, caregivers of both, including doctors, nurses, family, hospice and anyone who visits these patients must be very careful. Please spend some time on this site and download our e-Book for guidance. The epidemic is unstoppable and spreading rapidly. The mismanagement is making the problem worse by the day. Speak out for change.
By Tracy Miller, New York Daily News
CJD Symptoms Came Rapidly
A Maine mother of four has died of a rare brain disorder related to mad cow disease. Sandra Tucker Kennedy, 38, died March 3 of Creutzfeldt-Jakob disease (CJD), a degenerative brain disease that affects only one in 1 million people worldwide per year, and about 300 people per year in the U.S.
It is not known how people develop the incurable illness, which causes rapid, progressive dementia and loss of body functions. Scientists believe some cases arise from a genetic mutation. Others theorize that the disease may be passed through consuming beef contaminated with bovine spongiform encephalopathy (BSE), or so-called mad cow disease. CJD and BSE both belong to the class of little-understood disorders called prion diseases.
Kennedy, who lived in Kennebunk and worked as a nurse at Maine Medical Center, leaves behind husband Jake Kennedy and their four children: son Tucker, 9, twin boys Asher and Gunner, 5, and daughter Skyler, 2.
“She worked nights at the hospital so she could stay up the next day to take care of the kids,” Jake Kennedy told the Portland Press Herald. “She always did above and beyond to be her best for her children.”
Friends and local businesses in rushed to support the family after Kennedy’s devastating diagnosis, the Press Herald reported, raising over $80,000 towards her medical expenses.
Kennedy’s disease set in quickly. She first began feeling ill with a cough and vertigo in November. She was admitted to the hospital on Christmas Eve with symptoms “similar to that of a stroke patient,” according to Hope for Sandi, a fundraising page. Doctors ran a series of MRIs and spinal taps as they struggled to find a diagnosis.
Kennedy went home from the hospital after Christmas, but by mid-January her condition had worsened. She was unable to walk, and experienced slurred speech, vision loss and memory loss. Again, doctors couldn’t find a diagnosis, and she was eventually sent home from the hospital. Days later she had worsened again. Her husband drove her to Brigham and Women’s Hospital in Boston, where she was ultimately diagnosed with CJD.
The family posted a message on Hope for Sandi following her passing:
“Our hearts are very heavy but with the love and support from all of you, we find strength through our tears. Sandi has passed away and although our sorrow is overwhelming for a life taken too soon, we find comfort knowing she will live on though those she loved so dearly. Your continued prayers, support and love for the Kennedy and Tucker family has been truly heartwarming and amazing.”