Welcome back to the second edition to my neuropsychology testing chronicle!
In the first post of this series, I discussed my recent admission appointment with a neuropsychological practice for long-term troubles with Anxiety, Depression, PTSD, suspected Autism Spectrum Disorder and worsening cognitive impairments. Neuropsychology is the marriage between the neurological and psychological processes of illnesses allowing the complete view of the complex pathology of neurodegenerative disease. In the not-so-distant past, these components were separate and faulty as a result. Neuropsychological testing is an important part of medical monitoring in chronic illness life with Ehlers-Danlos Syndrome just as much as all the scopes, scans, and blood work. The testing examines processes which cannot be objectively defined otherwise while offering validation to those suffering from permanent and/or progressive deficits.
Finally getting this type of evaluation was a long time coming in my lengthy chronic illness story. My experiences as a Psychiatric Registered Nurse and chronically ill, undiagnosed Medical Zebra frightened me to the point I avoided any type of psychological care for the last several years in fear of mistreatment.
Ten years of declining neurological and cognitive functions, long-term struggles with anxiety, depression, PTSD, and suspected Autism Spectrum Disorder combined with recent, notable exacerbations of these issues make neuropsychological consult an absolute must.
This important step establishes a solid baseline of data for future comparison when the inevitable declines hit. Medical monitoring is a crucial but necessary evil in Chronic Illness Life with Ehlers-Danlos Syndrome. In the USA, every action in healthcare finds billable justification for treatments within the never-ending volume of ICD codes. Grievously, these ciphers are faulty with too stringent of criteria leaving access-denied bodies littered along the wayside of the road towards proper diagnosis and management. I urge every Spoonie to investigate the route of neuropsychological testing to better illustrate the difficulties experienced and better shape symptom management options towards improved quality of life.
Truly, it’s a daunting task even considering this route in my journey after decades of years proving my medical complaints were not Only in this Head. Appropriate coding and criterion noted by a diagnosing practitioner makes a world of difference in navigating the turbulent waters between providers, insurance companies, and access to care, especially with rarely diagnosed, complex disease processes like the Ehlers-Danlos Syndromes. Taking this step is a pivotal point of my journey. Furthermore, the choice took great courage and gumption because sometimes knowing is scary!
Neuropsychological evaluations offer quantifiable evidence of cognitive function with a definable focus on intelligence, memory, mental processing, behavior, and mood.
My troubles in all these areas start with my first memories but in more recent times a sharp, notable decline took my brain by storm over the last few years. I cannot recover my bearings as I once did. Sharing this experience is an effort to help others facing similar struggles in hopes they may find support and information in the lessons offered in this cathartic exchange.
My newest life’s mission incorporates weaving invisible disability and disease awareness into my writing. Sending off my neuropsychiatric journey to the vastness of cyberspace is terrifying but not so much as the lack of awareness still pervading modern culture to this day. After endless years of symptoms undiagnosed and undertreated, my nervous system is spent! I liken it to a broken phone charger: if you hold it like this, maybe twist it like that, and then leave it lay perfectly still it gives off a few more amps of power… Just not enough to keep me going before everything goes kaput again…Not anymore!
As a whole system, the body aims towards balanced responses to intrinsic and extrinsic factors affecting homeostasis. Using administrative privileges as needed, the body powers down less vital systems to make up for the ill effects of other systems gone rogue. Fundamental quandaries in cellular function run amuck, causing metabolic dysfunction. Eventually, natural defenses break down, leaving no system is unscathed by the disequilibrium.
Predicaments disrupting the natural ebb and flow of the body are often times first evidenced by neuropsychiatric symptoms. Even “just depression,” “just stress,” or “just anxiety” may be caused by degenerative processes beyond our emotional states. The processes work insidiously, damaging neurological functions over time with the only signs and symptoms being mental disharmony.
Depression, anxiety, mental fog, memory issues, difficulties with problem-solving, lack of attention to details, and inability to sit still are just a few cautionary signs of neuropsychiatric illness too often disregarded as psychosomatic symptoms by practitioners who lack interest or time. Such complex cases end up worse for the wear because of this common tendency to disregard a person’s complaints as simply stress induced.
What’s worse is everyone deals with psychosocial stress in life. These mental effects are normal reactions to life stressors. Neuropsychological testing illuminates the blurred boundaries between normal and abnormal changes, allowing for clarity and objective data collection from a chronically ill brain’s reaction to life as a result of pathophysiological illnesses affecting the nervous system.
Too late Doc, the damage is already done!
According to Oxford Medicine, “Neuropsychology is concerned with disorders of affect, cognition, and behavior that arise from an overt disorder in cerebral function, or from indirect effects of an extracerebral disease.” These disorders include Alzheimer’s, Dementia, ADHD, Anxiety, Autism Spectrum Disorder, Parkinson’s Disease and numerous others. Rather than archaic psychological tactics of assessment, Neuropsychology uses structured, scientific testing methods of determination to clearly define exactly which portions of the brain and cognition are malfunctioning.
Including an hour break for lunch, it took nearly five hours to complete all aspects of the testing. I answered a variety of questions measuring my intelligence, comprehension, recall abilities, and how my mind processes reality. This line of questioning proved nerve-wracking as my attention to detail is great but my ability to process incoming details is severely impaired. As I experienced difficulties in several categories, a sense of validation entered my conscious thought: Finally, quantifiable evidence.
One of the most memorable aspects of the testing included the Rey Osterrieth Complex Figure Test. This test entails the subject (me) drawing a picture of a simple spaceship design shown below. Per the instructions, I copied the picture once initially while the sample was still visible. Then I copied the figure from memory after a half an hour. Finally, I reproduced the design a third time at an hour out from the original drawing. This test measures cognitive abilities on a scoring system giving points for correctly drawing details as well as a consideration to the time it takes to reproduce the figure.
Theoretically, the results reveal incites about a person’s ability to function, measuring cognitive deficits in memory, perception of objects in time and space, attention span, and even planning and executing functions essential to living.
Another component of my exam included the Kohs Block Design Test which measures intelligence. What’s unique about this particular intelligence test is it doesn’t require spoken or written language, thus making it particularly useful when language barriers prevent accurate intelligence assessment. I was instructed to copy patterns from a book of pictures using blocks with shaded sides.
The simpler patterns were easy enough but as the designs became more complex I felt mental blockades stopping me from any quick discernment to an embarrassing extent. The Kohs Block Design Test measures frontal and parietal lobe functions, quantifying difficulties expressed in neuropsychiatric illnesses such as Bipolar Disorder, Alzheimer’s and Traumatic Brain Injury. When scored this test reveals mental age and level of executive functioning objective from the subject’s experience.
The Wisconsin Card Sorting Test was particularly difficult, leaving me feeling less than capable by the end of the trial. This test assesses frontal lobe functions in the form of “strategic planning, organized searching, utilizing environmental feedback to shift cognitive sets, directing behavior toward achieving a goal, and modulating impulsive responding.” For the life of me, getting a grasp on the rhyme or reason to this test was difficult if not impossible. Much like sliding down a slippery slope, my mind eventually curled in a ball refusing cooperation on the matter soon after each new card pattern began and my responses became nothing but desperate guesses. I felt frustrated and concerned about my difficulties getting the point of this test.
With frontal lobe dysfunction, emotional and behavioral control becomes much more difficult. This effect compounds in the form of interpersonal issues along with difficulty in scholastic efforts, career, and social adaptation.
The frontal lobe holds the gage on impulse-driven behavior. Dysfunction leads to disturbances in the ability to manage impulses and/or respond to extraneous stimuli in a productive manner. Problem-solving, planning, and organization declines with damage to the frontal lobe. Personality shapes in response to frontal lobe function, making personality disorders such as Borderline Personality Disorder or Antisocial Personality Disorder more prevalent in those suffering brain damage from disease, trauma and most often, both. Multiple Sclerosis, Parkinson’s Disease, Vascular Dementia, and brain tumors are a notable few causes of frontal lobe damage as a result of neurodegenerative processes.
Feeling the frustration from the difficulties I experienced while undergoing these different tests exhausted me into a haze for more than a week after testing day. Even before my career ending injury, I began noticing mental delays and poor decision making when under stress in myself. As those stress levels peak and trough throughout life to extreme degrees, each swell serves to chip away at the stability of my faculties a little more. Now at the precipice of my decline, I feel fortunate to still possess cognition knowing I need the changes defined and documented in my records for future comparison.
[Gif description: clip from the movie Girl Interrupted. Susana played by Wynonna Ryder is sitting in her doctor’s office on a chair in front of large white framed windows. Susana is wearing a black and white striped shirt with black pants. Her hair is dark and very short. She is smoking and ashing the cigarette in a glass ashtray on the table next to her seat. The doctor is seen from a third wall view from behind. The text reads: Doctor-Explain it to me. Susanna- Explain what? Explain to a doctor that the laws of physics can be suspended?]
There were quite a few more aspects of the testing I cannot recall due to my poor memory. The table below lists several testing modules included.
The last activity for my big day of neuropsychological testing was a personality assessment comprised of 350 questions rated on a sliding multiple choice scale from “very much like me” to “not like me at all.” These questions surrounded more emotional and mood related connections as well as assessing for antisocial personality characteristics, suicidality. hallucinations and delusions.
I was familiar with the testing as it was common to see it ordered during my stint as a psychiatric nurse. I was as authentic as possible while answering the questions. My doctor gave me the choice to complete the personality testing portion or not, stating my exhaustion from the day was obvious and those results wouldn’t play into my overall results a large amount. Still, I wanted as much data as possible for my doctors and caretakers to have a clear picture of the challenges I face on a daily, minute-to-minute basis so I plundered through the assessment fighting off the urge to rest my head on the desk.
To Be Continued…
While no results were revealed the day of my testing, my doc danced around possibilities of completing the puzzle considering my trauma, history of mental illness, poor tolerance to stress, social disinterest with ineptitude, and numerous sensory/perceptive difficulties.
Just like the first appointment, the doctor used functional label terminology, stating I present with “high functioning Asperger’s type of ASD.” Considering such terminology is largely unhelpful, inaccurate, and harmful when describing the grand spectrum now known as Autism Spectrum Disorder, this reference makes me feel overwhelming alarm as opposed to validation. Using functional labels damages society’s approach to Autism, implying only those who function within certain societal expectations for leading a meaningful life may be considered functional aka valuable to society.
Please check out Functional Labels 101 by Feminist Aspie for accurate descriptions on why functional labels pose threats to the wellbeing of everyone along the spectrum. In my case, this statement indicated my practitioner was not updated and aware of the issues those who are #ActuallyAutistic face.
When I started this journey to diagnosis, I knew pursuing a suspected Autism Spectrum Diagnosis was likely to meet with controversy. Few local doctors understand the extent to which the spectrum now spans since the updates to the DSM in 2016. Sadly, regards to Autism in media and not-so-helpful awareness organizations perpetuate a stereotype, creating complex problems for those of us conditioned to put on a neurotypical mask. Awareness campaigns strive to redirect this misinformed characterization but ignorance still pervades.
#ACTUALLYAUTISTIC, A HASHTAG COMMUNITY ORIGINATING ON TUMBLR INTENDS ON BEING A SAFE SPACE FOR THOSE WHO ARE ACTUALLY AUTISTIC TO SHARE RELEVANT POSTS ABOUT AUTISM WITHOUT BEING EXPOSED TO DISTURBING ABLEISM AND MISINFORMATION REGARDING THIS NEURODEGENERATIVE PROCESS.
Hearing my neuropsychiatrist say “high functioning” brought on a momentary instance of panic into my mind sphere. All the horror stories of people with Autism Spectrum Disorder abused and belittled for non-conforming behavior crowded my thoughts. My nervous system surged begging me to react and debate this term but then my anxiety and neurotypical conditioning to behave got in the way.
Please check out #RedInstead for more information regarding the difference between organizations that stand up for the rights of people with Autism versus organizations that promote harmful dogmas damaging to the quality of life for ASD population.
The day was exhausting. I can’t be sure how many days it took to recover but I know it was almost two weeks before my mental and physical faculties regenerated from the energy expenditure. I barely get through interactions with those I love without crapping out let alone people I share no emotional attachments with. The doctor recognized I was exhausted by the day and trip so my follow-up appointment for the results was scheduled for over the phone in a month from my testing date.
The pressure I feel with my cognitive abilities slipping away like dandelion fluffs in the wind while a myriad of effects disrupt my flow lessened once the testing finished. The relief knowing an objective measurement of the decline I am experiencing was established refreshes my spirit for the rest of the journey. While it is a disheartening tale regarding loss of function, my hope is other Spoonies will read about my experience and also seek out neuropsychological testing to better define the impact of chronic illness on the mind’s ability to reason and function accordingly. Next stop: The Results. Thanks for reading!
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