Alzheimer’s Disease Diagnosis Not Precise
Dr. Stanley Prusiner, an American neuroscientist from the University of California at San Francisco, earned a Nobel Prize in 1997 for discovering and characterizing deadly prions and prion disease, also known as transmissible spongiform encephalopathy (TSE). The operative word is “transmissible.” President Obama awarded Prusiner the National Medal of Science in 2010 to recognize the importance of his research. Unfortunately, Prusiner’s science is being ignored and we all are facing a public health disaster because of the negligence and reckless disregard for public health.
TSE is a spectrum disease also known as prion disease. The spectrum includes Alzheimer’s disease, Parkinson’s disease and an extremely aggressive version known as Creutzfeldt-Jakob disease. Prusiner claims that all forms of TSE are caused by infectious proteins known as prions (PREE-ons). The prion spectrum varies in severity. It also varies depending on which region of the brain is impacted first. When the presenting symptom is memory loss, the diagnoses flow along the chart above.
Diagnosing Alzheimer’s disease is far from a science. Confirmation requires an autopsy and most families never have autopsies conducted. Most hospitals don’t recommend one because they can expose equipment, facilities, staff and patients to an unstoppable pathogen.
An Alzheimer’s disease diagnosis is more of a process of elimination based upon symptoms and personal history. The diagnosis essentially is conducted with the flip of a coin. Once the doctors conclude that there is no other explanation, including malnutrition, heart disease and cancer, most doctors diagnose the condition as Alzheimer’s disease, while the more educated physicians might diagnose the more severe forms as Creutzfeldt-Jakob disease (CJD). Most doctors can’t tell the difference and in reality, there is no significant difference between any form of prion disease.
Because of this imprecise diagnostic process, and because both Alzheimer’s and CJD are essentially the same disease, caregivers, family members and others who are in contact with patients with either diagnosis, must be very cautious. Patients are contagious via blood, saliva, urine, feces, mucus and cell tissue.
Items such as drinking glasses, forks, spoons should not be shared because they cannot be sterilized. Many other protocols demand reform at homes, hospitals, hospices and other environments where patients (even those not yet diagnosed who appear perfectly healthy) can spread the unstoppable prion pathogen.
When our family members die of supposed Alzheimer’s disease or CJD, we should all demand an autopsy. Under ordinary circumstances, most prion diseases go undiagnosed. Autopsies are rarely conducted on CJD and dementia victims because families don’t want to incur the expense and doctors and most regulators have no incentive to recommend one.
The lack of autopsies makes it very difficult to pin down solid numbers and trends. It also makes it easy for detractors to dismiss questions and recommendations from health advocates. No autopsy. No evidence. No statistic. No troubling trend. No smoking gun. No problem.
The spinal fluid and blood examinations help physicians make a clinical diagnosis while the patient is still alive. However, this preliminary report will not impact a death certificate. Confirmation of prion disease requires an autopsy. After death, pathologists and medical examiners are reluctant to conduct an autopsy because they are concerned about exposing themselves to a deadly infection.
Without an autopsy, the cause of death is classified as unknown or natural causes. Without an autopsy, the death becomes a non-event that impairs research on one of the great medical mysteries of all time. If you demand an autopsy, the statistic becomes part of the greater brain trust.
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Crossbow Communications specializes in issue management and public affairs. Alzheimer’s disease, Creutzfeldt-Jakob disease and the prion epidemic is one of our special areas of practice. Please contact Gary Chandler to join our coalition for reform firstname.lastname@example.org. Together we can prevent Alzheimer’s disease.