Dozens of Ryan Wilson Palmer’s family and friends recently celebrated an early birthday after he received a devastating diagnosis of Creutzfeldt-Jakob disease.
A few months ago 49-year-old Ryan Palmer of San Dimas California was fighting forest fires. Last February he married Wendy, his childhood sweetheart. Wendy was interviewed by ABC7 and discussed the speed with which CJD has progressed.
His prognosis is death within a year.
One week after his birthday party Ryan became so weak he was barely able to speak or to lift his head.
Wendy first noticed symptoms when Ryan’s speech became sporadic. She immediately rushed him to the ER. After one month of waiting for test results, they were given the diagnosis of CJD, a disease that affects one person out of one million individuals.
CJD is a neuro-degenerative disorder that is caused by an abnormally folded prion protein. Prasanth Manthena M.D who is Kaiser Permanente’s Chief of Neurology, compares it to a type of paper folding art. Dr. Manthena reminds people that origami has a specific shape and so do proteins. When prion proteins misfold a domino effect occurs in the brain. The abnormal protein does not break down, it just accumulates and becomes very toxic.
Dr. Manthena said that another issue with CJD is that each patient’s disease has different characteristics, including the speed with which the disease progresses. Ryan’s wife said she has seen his symptoms progress rapidly in just a few days.
Wendy is often reminded of their marital vows to love each other in sickness and health. When they received Ryan’s diagnosis he asked Wendy if “he did enough”. She reassured him that it takes a special person to run toward danger when everyone else is running away.
A GoFundMe has been started by his friends as the couple recently discovered that their health insurance does not provide coverage for Ryan’s 24/7 at-home nursing care.
Creutzfeldt-Jakob disease (CJD)
CJD is a rare and fatal degenerative brain disorder It is listed among a group of disorders defined as transmissible spongiform encephalopathies. Prions are formed due to a slight change in the structure of normal brain protein.
Although there are similarities between Alzheimer’s and CJD, the latter usually progresses faster leading to death.
About Mad Cow Disease
CJD received much public attention in the early 1990s when some people in the UK became sick with a variant of CJD after eating meat from diseased cows. CJD then, for a brief period, became known as Mad Cow Disease (bovine spongiform encephalopathy) or vCJD. Note, however, that most cases of CJD have not been linked to eating beef.
Wendy and Ryan are now living every day as if it is their last.