Injured Brains - Altered Minds: “Psychotic Illnesses” After Brain Injury

             Albeit common, mental illness after brain injury is NOT a foregone conclusion, much less “psychotic illness”, or neurodegenerative disease. Yet, psychotic illnesses, dementia and other neurodegenerative diseases are a well-established yet underreported serious future risk, especially after multiple head injuries, repetitive sub concussive hits or both. 

Whereas neurodegenerative diseases are associated with telethons more than root causes, psychotic illnesses are little discussed, HIGHLY stigmatized, and least understood. Even if more acceptable today because of the attention given to mental health after COVID, psychotic illnesses remain less about serious conditions like that portrayed in movies such as “A Beautifull Mind”, “Robin’s Wish”, “Infinitely Polar Bear” and “Concussion”, and far more often wrongfully linked with horror films like “Psycho”.  Yet, notwithstanding the large number of Americans annually brain injured and suffering from serious mental illnesses (SMI), dementia or neurodegenerative disease, America’s medical response has been largely inadequate, dysfunctional, and too often utterly ineffective for far too many individuals.

To be clear, “psychotic illnesses” are best described as those illnesses for which psychosis is a primary or chronic symptom, even if treatable or episodic. Thus, serious mental illnesses (SMI) that have psychosis as a fundamental characteristic are mostly forms of Schizophrenia, including schizoaffective bipolar disorder, as well as bipolar disorder with psychotic features, depression with psychotic features, TBI psychosis, and idiopathic psychosis (unknown source). However, few can debate the manic and often end-of-life psychotic reality for so many afflicted by dementias and neurodegenerative disease, such as Alzheimer’s, Parkinson’s, and especially CTE.  

The film “Concussion” (2015) revealed the plight of many NFL players living with neurodegenerative disease resulting from brain damage after repeated concussions and innumerable repetitive sub concussive hits to the head. Until then Chronic Traumatic Encephalopathy (CTE) was all but fiction, despite the bitter reality for scores of athletes in all contact sports          (frequently independent of age), many succumbing to suicide.

Suicide is often seen as an irrational choice. However, it is sometimes the result of psychosis, driven by the utter absence of sleep across days, a well-documented and primary symptom after head injury, dementia and neurodegenerative disease.  Additionally in other countries, suicide is seen as a rational decision to end life in face of a terminal illness or in Holland to end incurable suffering that has evaded treatment. 

In 2014 the beloved actor Robin Williams ended his life unknowingly laboring under the severe influence of Lewy Body dementia, little known - yet the second most prevalent dementia after Alzheimer’s.  A distinct form of Parkinson’s disease, associated with fluctuating cognitive ability, physically acting-out dreams, psychotic episodes, amongst symptoms shared by other serious mental illnesses and neurodegenerative diseases alike.  

“Everyone you meet is fighting a

battle you know nothing about.

Be Kind. Always.”

Robin Williams, attribution.

Far too many assumed that Williams’ suicide was the direct result of depression.  Yet, Lewy Body dementia, and all dementias & neurodegenerative diseases are far more complex than symptomatic depression alone, as fully described by Robin Williams’ widow, Susan Schneider Williams in the 2020 documentary “Robin’s Wish”.  

Now I find myself, alongside my family necessarily navigating psychotic illness and Parkinsonism after decades of navigating brain damage from far too many head injuries. It is partially attributable to unsuccessful and mostly non-existent treatment, the consequence of Repeated Misdiagnosis, Malicious Diagnosis, Desperate Self Diagnosis, Evolving Diagnosis leading to Place-Holder Diagnosis, until a Final Diagnosis using the irrefutable fingerprint of motor and autonomic deficits, surreal cognitive fluctuation, severe sleep disturbance, troubling hallucinations, amongst other clinically definitive symptoms that can be corroborated via imaging and biomarkers. Exacerbating the situation further still is the ebb and flow of psychosis, for which my awareness is all but neurologically impossible; and for which my family and many doctors struggle to recognize during the beginning and recovery periods of silent distorted thinking – a “lesser” degree of psychosis.

           Focusing on doctors that Couldn’t, Wouldn’t and Didn’t is of no consolation nor fair to medical professionals whose practice involves our most complex and least understood organ; an art based in science for which the knowledge base is ever evolving.  Patients and families are reminded that doctors are subject to the human condition, equally replete with human idiosyncrasies as all others, subjected to many unfair restraints by insurance companies. Further still, physician-owners must necessarily provide their expertise while managing their employees and running their business.  Thus, I find comfort in trying to help others avoid the pitfalls that impacted my family and me, and  described in “Understanding the Constellation of Symptoms after Brain Injury”, attached hereafter. 

Leading article & to be read with “Understanding the Constellation of Symptoms after Brain Injury”.