Introduction from Encephalitis411
Encephalitis is a serious and sometimes fatal medical emergency. Most do survive the acute stage, particularly if the diagnosis is made promptly and appropriate treatment is initiated before the inflammation causes irreparable brain damage. But as many in our community know, making it past the acute stage of the illness only marks the beginning of the long journey to recovery.
Further still, there are some patients who never truly recover. The inflammation may have been so severe that long-term health complications arise, a situation which few are equipped to handle. The result is often a confusing and agonizing journey for caregivers to search for answers, and find follow-up medical care, in an attempt to “get their loved one back.” We at Encephalitis411 know all too well of the additional layers of devastation and heartbreak this causes.
For those who have battled through the ugly realities of the encephalitis journey, you’ll find a poignant sense of familiarity in Catie Duggan’s words below. She bravely shares her story not only to honor the memory of her mother, Rae, who passed away a year ago today; but to raise awareness and advocate for improved standards of medical care.
Please join us in carrying forward Rae’s positive and courageous spirit, and using Catie’s strength as a catalyst for positive change in the fight against encephalitis. If you would like to write a story for our blog, join our fundraising committee, volunteer, or have your loved one honored on our In Memoriam page, please email us at email@example.com .
Catie, please know that you are making a powerful difference through your advocacy and that our community stands together with you with heartfelt condolences and love.
This is my story about my mom’s journey with encephalitis, and her slow decline following her diagnosis and the professional inadequacy of care that we received throughout the 19 months that she courageously battled, until her death on July 27, 2022.
On December 23, 2020, I received a text from my dad saying that my mother woke up in the middle of the night, mumbling, confused and disoriented, wandering throughout the house. A few days prior she was complaining of a stiff neck and headache. Concerned, he called an ambulance. My mother was taken to Montgomery General Hospital in Olney, MD where she stayed for the next seven days.
Once admitted, an infectious disease doctor was notified of her behavior and began to run tests including a spinal tap. My mom’s brain was inflamed.
She was diagnosed with herpes encephalitis. What? I had never heard of herpes encephalitis before. Without hesitation, I looked it up and what I found sent instant shivers throughout my body, my heart began to pound and I wept. I was overcome with fear and worry.
I read that,
“Herpes simplex virus (HSV) is the most common cause of encephalitis (brain inflammation) in developed countries and is the most treatable of all types of infectious encephalitis. But swift diagnosis and treatment are critical as there is a high mortality rate if left untreated for more than 48 hours. With treatment, the mortality rate is 30%; without treatment, the mortality rate is 70%.” ~Encephalitis 411
Was my mother’s encephalitis treated in time?, I wondered.
I wanted to be with her immediately but covid restrictions wouldn’t allow visitors. Sadly, telephone calls were as good as it was gonna get. The conversations I had with my mom were… interesting. I knew that something was different about her the first time we spoke. She would talk in a whisper as if she was hiding a secret from her “friends” who worked at the hospital, yet tell me that they were mean and aggressive, before rushing me off the phone. Another time she claimed she could see my brother Christopher out the window, yet my brother was not at the hospital.
I soon learned that delusions and hallucinations can follow the initial onset of encephalitis and that brain damage in adults (and in children beyond the first month of life) is usually seen in the frontal lobes (leading to behavioral and personality changes), and temporal lobes (leading to memory and speech problems). The damage can be severe.
A week later, my mother returned home from the hospital. Her brain inflammation was alleviated with the administration of IV acyclovir which was given within the first few days at the hospital. My father became a full time caretaker upon her return and continued to administer the IV acyclovir at home, with the help of a special nurse that would visit occasionally over the next few weeks.
We were hopeful and relieved that she was home, but scared not knowing what to expect. She seemed happy for a little while, but we began to notice odd behavior, like putting her pants on backwards or placing items where they did not belong. She was unable to write legibly or remember certain things, like knowing what a toothbrush was, but not understanding how to use one. She suffered with severe anxiety and restlessness that would not let her body or mind rest, often resulting in sleepless nights. Her symptoms were worrisome to her which exacerbated her anxiety. She knew something was wrong.
My father and I took her to see her PCP and visited with a neurologist, neither of whom knew hardly anything about encephalitis. The neurologist performed an initial cognitive impairment test, EEG and neuropsychological exam all which were seemingly “normal” for her age, with no concerns.
After months of meetings with the neurologist, and bypassing our observations, he insisted that more time was needed and that her anxiety needed to be under control, until further evaluations could be done. It seemed that she was merely being treated as another elderly patient with early signs of dementia. The doctors just weren’t getting it.
She began speaking with a neuropsychologist and a psychiatrist who prescribed her a cocktail of psychiatric medication that simply masked the underlying conditions without understanding the complexity of what she was experiencing. My brother Christopher and I would accompany my dad to the doctor’s with her. One of us would speak to the doctor, while the other would walk my mother outside the office, making every effort to distract and calm her mind.
I came to learn about the chronic phase of encephalitis, when the brain is no longer inflamed. Doctors can only offer survivors symptomatic management as there is no specific treatment to reverse the brain damage. On top of the anxiety and restlessness, the list of ongoing symptoms was a daily struggle for my mother: physical pain throughout her entire body, depression with bouts of crying, obsessive thoughts, extreme confusion, aphasia, bizarre conversation, paranoia, migraines, I could go on….
We became concerned that the medications were making her behaviors and short-term memory worse, and near impossible to discern the brain damage from the side effects of the medications. I longed for clarity and wanted my mother to detox and be observed to understand first hand what we as a family were noticing.
My mother was admitted to Johns Hopkins where I stayed by her side with the help of my sister-in-law, giving my dad a much needed reprieve. I requested that further testing be done to rule out follow-on autoimmune encephalitis.
After another spinal tap, CT-scan and a psychiatric evaluation, my mother was released after a 10-day stay with no additional findings. Her body was healthy. They adjusted her medication, but the behavioral improvements didn’t last long and her conditions continued to worsen.
Over the next year, my mother was in and out of different hospitals every few weeks. My father did everything he could to care for her and hired a few in-home nurses, but the chronic symptoms my mother experienced were beyond the nurse's training or capabilities.
It seemed that there was nothing any of us could do to alleviate her unwanted thoughts and behaviors, or any medicine or cathartic coping skill to comfort her. I realized that there was no answer to understanding the aftermath of an inflamed brain and that my mother’s journey with encephalitis was unique.
After 16 months as primary caretaker, I understood my father’s painful decision to move my mother into an assisted living facility. She struggled and courageously fought a long battle until the Lord called her home just 3 short months later.
If you had the pleasure of knowing my mom, you knew from the moment she greeted you with her sweet smile and thick New York accent that you were welcomed. She was a fun loving, positive woman, making friends everywhere she went and always had a funny story to tell. Her affection with hugs and kisses, no matter who you were, and generous love for her family was unmatched. She was a woman of faith and kept her faith in God till the very end.
My mother, Rae, was a beautiful soul whose brain did not recover from the chronic phase of encephalitis, and who left this Earth too soon. What’s truly scary is that encephalitis does not discriminate by age, sex, or prior health status; it is a serious and sometimes fatal medical emergency that strikes without warning.
20,000 people are diagnosed with encephalitis in the U.S. each year, yet 8 in 10 people don’t even know it exists. Heart strickenly, my family and I learned first hand that lack of awareness extends even to medical professionals: patients are often misdiagnosed, resulting in delayed treatment, decreased recovery potential, and worse quality of life outcomes.
This needs to change.
Please help spread the word about encephalitis in honor of my mother Rae, and help to improve the wellbeing of all lives touched by this devastating illness. This applies not just to encephalitis survivors but also to anyone who comes in contact with them, including their family and friends.
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