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 info@encephalitis411.org .

​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.  

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.

I enjoy reciting my poems to others and have finally accepted that I have to read them from the printed page, however much I would love to recite them from memory. Funny thing this post-encephalitis life (over twenty years now) —the brain working well enough to write the words but not well enough to remember what’s been written! 

You’ll be pleased to know I now spend less and less time screaming at the moon and very little wallowing in the once was me.

​Rob, thank you for sharing this powerful piece with us! You've not only boldly articulated your personal experience, but given a voice to countless others afflicted by the same post-encephalitis challenges. To our Encephalitis411 community members, we invite you to let us know what emotions the poem evokes for you, or send in a poem of your own to info@encephalitis411.org.

Good news beamed the doc no sign of dementia 
what?
hasn’t he read his own referral?
assess cognitive defects from encephalitis 
oh yes pretty well normal for age
sudden memory loss normal for age?
I don’t want to be normal for age
I’m a chess player and he says wonderful 
you can still play snakes and ladders 
the beam shifted
well that’s all good isn’t it
was there anything more?

And that was that
you break a leg they give you a crutch
you break a brain then you’re on your own
if you’re normal for age
and the nine year old beats you at chess
and you pretend you’ve let him win 
but you do look normal
and if another friend patronises you
we’re all forgetting things at our age
you’ll wring his scrawny neck within
and smile happily without
and retire early ‘to pursue other interests’ 
the job too demanding for normal for age
and hear them say not pulling his weight
not seeing the leaden lumbered uphill pedalling
ever paddling beneath 

But my intellect is not me 
my processing speed is not me
those one time overproud possessions
lost to a marauding virus 
cerebral kenosis revealing 
the real me is more a
seeing afresh
friends family strangers
that lorikeet now
upside down feeding
and grandma’s hundred year old lavender still blooming
I laugh with you cry with you
and if my jigsaw pieces keep falling out
and if I get lost in once familiar streets 
does it really truly matter?
a never expected silver lined gift of freedom 
thank you I say 
and shake hands with that old virus

or go outside 
and scream 
at the silent moon

or swallow the sweetened lure 
and wallow
in the lost and once was me

For over a decade, the Cheek’s have been on a long journey with a strange illness that was misdiagnosed as schizophrenia. It took years of doctor’s visits, advocacy, and persistence as a family in order to unravel the mystery of what Julia Cheek (bottom left in the photo above) needed to heal.
 
Julia’s story is an illustrative case of how complex it can be to diagnose, treat, and recover from autoimmune encephalitis (AE). While classic cases of AE present suddenly with a myriad of neuropsychiatric symptoms, there have also been occasional reports of AE that present with a slower onset or with isolated psychiatric symptoms. There may be fewer lab or imaging abnormalities than typical, and no identified autoantibody; but these patients have nonetheless responded dramatically to immunotherapies.  
 
Julia’s mother, Jessie Cheek, captures the harsh realities of having an unusual case of seronegative AE in her book Schizophrenia or a Mysterious Illness: Julia’s Journey. Jessie is a rare disease advocate who generously shares her knowledge with others, provides support to those who could use encouragement, and fosters connections between community members. We’re delighted she wrote this blog post for Encephalitis411, which shines a light on just how variable encephalitis can look!

As I write this, Julia Cheek is 27 years old. My husband, Mike and I never expected that our daughter would ever have any health issues.  She was a happy, healthy, and bright little girl, but once she hit puberty, her personality began to change slowly.  Her symptoms developed very gradually, unlike the experience of many other encephalitis survivors.  

​Julia began struggling a little with her schoolwork in 2008, but by the time she was in her sophomore year of high school in 2011, her grades slipped drastically, and she began to exhibit strange mannerisms.  We brought her home to home-school her, and discussed her situation with her pediatrician, but Julia continued to decline mentally and emotionally.  She withdrew from social interactions and seemed to be reacting to internal thoughts.  She told me that her imaginations seemed to be taking over her life. 
​
When ADHD treatments, counseling for fantasy addiction and other therapies didn’t work, we began seeking other doctors for help.  After consulting neurologists, endocrinologists, pulmonologists, and psychiatrists, we still had no answers.  The psychiatrists thought she had an underlying medical problem, and told us that we needed to find a more curious doctor.  Meanwhile, Julia continued to decline until she had a complete psychotic break.

In September 2013, Julia’s first psychotic episode began with a severe stomach ache and headache. She was catatonic by the time she arrived in the ER, but she was not admitted into the hospital. The hospital’s diagnosis was depression and thyroid issues.   At 3 a.m. we were told to take her home and find a new neurologist and psychiatrist. Everyone in the family went to sleep, except for Julia.

Julia left the house at 4 a.m. and, after crossing a busy street into another neighborhood, began banging on a stranger’s door.  The police were called, and at 5:30 a.m. we received a phone call from a police officer.  We had been sleeping and did not know she had left the house.  She still had on her identification bracelet from the hospital and she remembered her phone number, but when the officer brought her home she declared that she was our adopted daughter and that her real name was Rebecca Jones. She had many other delusions as well.  

We admitted her into a local psychiatric hospital where she was misdiagnosed as having schizophrenia.  Her local psychiatrist gave her medications for schizophrenia but they didn’t help her much. 
​
After seeing another neurologist, another endocrinologist and a new primary care doctor, many more tests were run.  Her new primary care doctor and her psychiatrist told us to take Julia to the Mayo Clinic in Rochester, Minnesota. 

In January 2014, Julia spent many days at the Mayo Clinic, but the staff could not find any organic cause for her symptoms.  Her MRI and PET imaging scans of the brain, electroencephalogram (EEG), bloodwork and cerebrospinal fluid were mostly normal.  For a few hours after her lumbar puncture she seemed to regain some normalcy.  She talked to us that evening, cried and asked us when the doctors were ever going to figure out what was wrong with her body.  It seems that the pressure released by the lumbar puncture had helped relieve the pressure in her brain. 

But by the next morning, she had returned to her non-communicative self and the doctors had not been able to observe the temporary change in her demeanor, so most of the doctors did not think that event was significant.  Her Houston psychiatrist though told me to emphasize this event in all of my follow-up visits with other neurologists. 
​
The Mayo Clinic doctors did not think she was in the beginning stages of schizophrenia.  They provided the diagnoses of psychosis (non-specific), likely delusional disorder, and idiopathic hypersomnolence. The doctors thought she might have a developmental disability as well, but didn’t know what it was.  The doctors wouldn’t rule out an organic cause, but they couldn’t pinpoint anything.

We came back to Houston, her doctors ordered more tests, but Julia continued to decline.  A new endocrinologist decided that Julia had Hashimoto’s.  Julia kept declining to where she could no longer change her clothes, shower, or eat or drink without lots of prodding.  She was in the ER twice for dehydration.  She was very irritable and hardly spoke to anyone in the family.  We wondered if Julia would ever be happy and fully functioning again.   We had many of our friends praying for her and, at our church, a special prayer meeting was held for her healing.

One of the Mayo Clinic doctors suggested that we could have Julia try a round of steroids to see if there would be any improvement.  After the doctors had run out of other tests to give her, I asked her neurologist to prescribe some steroids for her.  
​
If I had known what I know now, I would have asked for high dose steroid infusions, but he prescribed 40 mg/day oral steroids for a month. Finally, Julia did show some improvement.  She began to be able to eat, drink, shower and dress herself again.  After one month, the doctor wanted to taper from the steroids, but I begged him to try again for another month.  

Meanwhile, I was talking to other doctors and corresponding with many other people.  I heard about the Undiagnosed Diseases Network that would have a new site in Houston.  When Julia continued to experience small improvements on steroids, it was recommended that we contact the Mayo Clinic again.  The local neurologist agreed to allow Julia to continue the steroids while we waited for our Mayo Clinic appointment, this time with a specialist in the adult neuro-immunology department.

​In August 2014, Julia was officially diagnosed by the Mayo Clinic doctors with sub-acute autoimmune encephalopathy and Hashimoto’s thyroiditis. She was given Imuran and IVIG infusions.  We finally had hope. 

It took about a year before Julia could begin to manage all of her homeschool subjects again, but she eventually managed to complete all of her high school studies in 2017. 
 
In 2016, Julia was admitted into the Undiagnosed Diseases Network where she was given the further diagnosis of Coffin-Lowry syndrome (CLS).  CLS is caused by a rare gene mutation and can present as craniofacial abnormalities, progressive skeletal abnormalities, intellectual disability, and behavioural challenges.
​
We were told that Julia was the only known medical case of a patient having CLS as well as autoimmune encephalitis (AE).  I wondered if there was a connection between her CLS gene mutation and her AE.

​Julia was able to complete her Associate in Arts degree in 2020 and is currently working on an online Bachelor’s degree in Creative Writing at Colorado Christian University.  She is pursuing her many hobbies and enjoys social interactions again.  It took a long time for her brain to heal again and an even longer time for her emotions to heal. 
 
Today Julia is happy again, and we are so very thankful. She had lost contact with her best friend from high school, but today they chat regularly and even though she now lives in another state, Jessica recently came for a visit.
 
Julia now uses her imagination in positive ways and recently used it to fix up her room.  She is enjoying her Creative Writing classes and clubs, and looks forward to writing her own book one day.

​During Julia’s healing journey, our family has met other survivors of autoimmune encephalitis and one step in Julia’s healing was when she consented to go with me to visit Sha Conerway.  Julia was at first very reluctant to talk to anyone about what she had experienced with encephalitis, but now she wanted to begin helping someone else. Julia’s story encouraged Sha’s family.  We helped Sha find a good doctor and we prayed for Sha to be healed also.  After Sha recovered from AE we visited with her. Sha has also written a little book about her experience with AE called Grateful. 

After publishing my book about Julia’s journey, I began to hear from other Coffin-Lowry syndrome (CLS) families and a number of them seemed to have daughters whose stories sounded eerily similar to Julia’s story. Several of them are now looking to pursue doctors  in order to be evaluated for AE. I still wonder if the Coffin-Lowry gene mutation might have contributed to Julia’s AE, but there is currently no medical literature that links these two rare diseases.

​I had had a miscarriage a few months before I became pregnant with Julia, so I was concerned that I might have another miscarriage.  A verse in the Bible was very meaningful to me during this time.  Philippians 1:6.  “He who began a good work in you, will be faithful to complete it.”  During those years when Julia was so very ill, I kept wondering how God was going to work in Julia’s life.  This verse continues to encourage me as I see how much Julia has healed during the past eight years.  Her current primary care doctor recently told us that she has continued to notice improvements and ongoing healing even during the past four years since she was stable enough to begin college.  We are so thankful. ​

Over the years, Julia’s doctors have referred to her illness by several different names.  Initially she was diagnosed with sub-acute autoimmune encephalopathy.  Other doctors call it autoimmune encephalitis.  Some call it steroid responsive encephalitis or even Hashimoto’s encephalitis. Today the term seronegative autoimmune encephalitis is often used to describe patients like her.  Doctors seem to disagree on exactly the correct label.  Some doctors even believe her condition is different because of her Coffin-Lowry syndrome. 
​
Whatever the exact name, Julia seems to have some form of autoimmune encephalitis that has responded very well to immunosuppressant medication.  Though it’s been a long and slow journey, we are thankful for her continued healing over many years.

Encephalitis411's origins go back well over a decade, to when founders Becky Dennis and Bob Morris met while serving on the board of Encephalitis Global (which later became a part of Encephalitis411). Back then, there were fewer resources and ways to meet others in the encephalitis community. Most met through the Inspire.com forum, which has a rich history of conversation and knowledge that can still be accessed today.

​Linda, a long-time community member who some may recognize from Inspire.com, recently caught up with us to provide an update on her son. For anyone looking for hope and inspiration, this is it! It's not too often that we get updates from those who were active in the community's earliest days, which makes her uplifting testimony all the more memorable. We are so proud of Colton and hope you'll join us in celebrating his successes by reading his story below.

​In the summer of 2004, my one-year-old son, Colton, was a very healthy and busy little guy.  During the first year of his life, we kept up with all of his well checks, including his vaccinations, which included a vaccine for Chicken Pox.  Shortly after receiving his shot our world changed almost instantly.

We had a wonderful friend from our church who cared for Colton for a few hours a day while I worked.  I was at a lunch meeting when she called me and told me that she thought Colton had had a stroke, that something was terribly wrong.  Colton had been walking for a few weeks before this and she noticed that as he tried walking he was falling over, when she sat him in a chair he would slump over.   I called my husband whose job was closer to her house and he ran to get him.
​
In the emergency room they couldn’t find anything wrong, they said his falling was a result of his age, but we knew it was not.  As minutes turned into hours, we noticed that he wasn’t focusing, as if he wasn’t looking at us or knew who we were.  The decision was made to admit him.  My husband stayed with him overnight as we had two daughters at home that I needed to be with. ​

​​On November 14, 2019, I was seen in the Northside Hospital emergency room in Cumming, Georgia for dizziness. Due to my work travel for the last 5 weeks, it was determined to be vertigo and I was released.  I did vertigo relief exercises and acupuncture twice to try to help.  
 
On 11/17/2019, my husband drove me back to the acupuncturist as my symptoms had worsened.  As we left, he had to carry me as I could no longer walk and my speech was severely slurred.  Thankfully, he took me to the hospital again and this time I was admitted.  
 
This is where my journey to finding answers and healing began.  

​By 11/19/2019, I had 3 MRI scans, 2 of them with contrast.  I was started on antibiotics to throw anything at whatever this was to help.  My rounding neurologist could not find anything with the results of the MRIs and bloodwork.  My symptoms worsened as now I could not walk, talk, see, or keep food down. 
 
On 11/20/2019, my rounding Infectious Disease (ID) physician insisted on a lumbar puncture (LP) in a further attempt to find answers.  She started me on intravenous immune globulin (IVIG) also.  This was a 5 day infusion that was administered along with antibiotics.  My husband, daughters, and sisters sat around the clock with me to assist in helping me get up for basic needs.  I had to be assisted in walking, eating, using the restroom and eventually showering.  I was poked and prodded for daily bloodwork and more MRIs  (9 in total) to try to see anything.  
 
By 11/27/2019, results from the LP and MRI finally resulted in the diagnosis of viral encephalitis that settled in the mid brain and brain stem, viral meningitis, and to top it off, IgG (old) antibodies of Lyme disease.  It was a go big or go home scenario.  The viruses debilitated me and the Lyme slowed my ability to recover.  
 
11/28/2019 was Thanksgiving.  A ton to be thankful for including finally being diagnosed, friends and family, medical staff, and my faith to carry me.  My family enjoyed Thanksgiving dinner from my hospital room and I attempted (to no avail) to eat and keep it down.  
​
On 11/29/2019, I had a double lumen PICC line (central venous catheter) put in my chest and orders to be moved to a local rehab facility (overnight stay) so I could receive constant occupational therapy (OT), physiotherapy (PT), and speech language pathology (SLP) therapy.  ​

11/30/2019 was my first full day of rehab and they were able to get me to use a walker for 17 ft, even further with the wheelchair.  This was a 3 week journey of relearning to do simple tasks of brushing teeth, using the restroom, showering, etc.  Keeping food down was still a challenge.  I continued daily infusions of antibiotics (Rocefin) and Heparin shots in the abdomen since I was still spending most of my time in bed.  
 
12/20/2019 was the best early Christmas present—I got to come home! Mainly using the wheelchair but still learning the walker, and my husband caring for my needs with showering, etc.  ​

At home, I continued to have PT come to the house to work with me and my recovery.  I was mainly under the care of my ID and having daily infusions of the antibiotic—for 13 weeks daily.  I also had weekly visits at my ID office.  At the same time, I began working with a Lyme Literate Doctor (LLMD) to combat the Lyme disease.  He felt a treatment of Supportive Oligonucleotide Therapy (SOT) was worthwhile to pursue.  It’s pretty fascinating to learn about.  I have the sweetest family and friends who set up a GoFundMe page because it is a very costly therapy.
 
I also started boosting my gut health and immune system with Myer’s Cocktail infusions and other natural infusions of vitamins.  Typically 2x weekly for about 6 months.
 
2/27/2020 I finished my 13 weeks of antibiotic infusions and had PICC line removed.
 
3/13/2020 I received my SOT infusion!  This should and hopefully did stop the replication of cells infected with Lyme.
 
March was also the month I started showering myself.  YAY!
 
By 5/2020, my speech had improved to nearly 100%, and I had stopped using my wheelchair and walker and graduated to a cane.  I was very unsteady but determined to become independent.  I also started attempting to drive to close by spots, including doc appts within 5 mins away.  I was still doing PT and aquatic therapy.
 
On 9/25/2020 I graduated from PT.  Not because I was great but because I had all of the tools to continue improving on my own.
 
I also returned to work full-time.

Facebook post - November 17, 2020:
 
One year ago I started a journey I never expected!  Most know but some do not. What started out as thinking it was vertigo ended up with viral meningitis, encephalitis in the brain stem, and Lyme disease - mimicking a stroke. This left me unable to walk, talk, or see. I’m so thankful to be here a year later to tell my story and help anyone that may be in similar circumstances. So many blessings and so much love to spread!  Thank you Colin J. Campbell, Catie Campbell, Evie Campbell, Lynn Walker Kirby, Steve Kirby, Stacey Walker Stanley, Michelle Simmons Payne, and Catriona Campbell for loving/caring for me like I never imagined!  Thank you quarantine for allowing everyone to be with me during my recovery!  My care took so many people - family, friends, healthcare heroes - and so much love. A year of infusions, many MRIs, PT, OT, and SLP dropped so many angels in my path!  And I met the sweetest people to help with doors, elevators, and everything in between while trying to get the hang of a wheelchair, a walker, and unsteady walking. I was also able to participate in specialized treatment with everyone’s support. Since this, I have improved and I can almost walk without struggle. Through this all, God has carried me, guided me, made sure I’m cared for, and lit my road to recovery! 
 
I’m not sure what the future holds nor do I know God’s use for this journey, but I’m certain I will know soon and proudly do as I’m led. 
 
1 Peter 5:10 And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.
​

​2021 was a year that I continued to improve on stability and relearn functions not used daily.  I realized I couldn’t sing or whistle.  These and many more tasks just took focus and determination to relearn.  It still remains very tiring.  I have to tell my brain to tell my feet to step up for a curb or step over a puddle.  Things just weren’t automatic for me.

​Fast forward to 1/10/2022, COVID positive and started losing motor skills.  Neurologist stated this will always happen with any virus.  WHAT???
 
I had the monoclonal antibody infusion and started back with PT.  What I realized is PT continued to work on strength.  That is one item I never lost.  I lost the ability to do tasks.  My brain could not tell my body what to do.

 
SO… I stopped PT and joined a gym: Orange Theory.  This has been phenomenal!!  If I can’t figure out an exercise, they give me modifications until I can figure them out.  
 
I also have returned to my kinesiologist for help and sought inflammation reflexology technology (IRT) to take care of any inflammation remaining in my brain.  I feel I am closer to being myself, recognizing I have a new normal.
 
This week marks my 3 years on this journey.  (And my 100th Orange Theory class :)) I am so blessed to be here!

​What I have found out, I (and my family) am/are my own advocate(s).  No one really knows what is going on in my brain as this is not a typical journey.  

I wish I knew a “me” when this all started so I could know stuff to help.  I do have a new brain with a TBI now.  

I have taken all paths with medicine and have a healthy blend of western and eastern medicine.  Sleep is my friend and if I need to stop a second, I do.  

My mental health is so important and I listen to my head, my heart and my body.  

My faith in God has given me the strength to move on.  He has provided in all ways for my healing.  

​My family and friends are my cheerleaders and mean the world to me.  I cannot thank them enough!

The physical location of rural patients often impedes access to qualified professionals with knowledge in the brain disorder, encephalitis. However, as the healthcare world has quickly adapted to telehealth, this provides new opportunities for those in remote locations.
 
As complex patients, those with encephalitis typically require oversight from multiple healthcare disciplines. Based on the implications and extent of damage to the brain due to encephalitis, a patient may need access to neurology, psychiatry, neuropsychology, physical therapy, internal medicine, pulmonology, speech therapy, psychology, immunology and epidemiology. In smaller populations, there is limited or potentially no access to some of these specialists.
 
The likelihood of driving from a rural area to a larger city with all of these disciplines and seeing all the healthcare professionals needed for ongoing care is impossible without incurring the additional cost of staying in a hotel for several days, adding to the burden of those costs. Even if a patient makes the trip, it’s unlikely that they’ll see the most knowledgeable doctors who have a thorough understanding of encephalitis all within a 2- to 3-day span.
 
So how does COVID-19 produce any beneficial outcome when we consider the staggering number of infected people suffering and the alarming number of deaths? As the board president of Encephalitis411, a nonprofit that aims to improve the quality of life for those impacted by encephalitis, I see a silver lining for our rural followers, those patients and caregivers who access our hotline and ask for referrals in the absence of local help. 
 
While telehealth has grown in acceptance, this platform has catapulted since COVID-19’s surge while officials create more stringent means of social distancing. Telehealth is playing a critical role in day-to-day access to healthcare professionals. Patients in rural areas now have the same access as those who live within 5 miles of their doctors. This is a landmark turning point in supporting those who have been sorely underserved in the past.
 
My hope is that when COVID-19 is somewhat in the rearview mirror, however long that is from now, that we don’t return to “normalcy” in providing healthcare. I hope that telehealth becomes a common alternative, a platform to serve anyone, regardless of location.
 
Will insurers or payors need to change their policies? Yes! As an example, with my current insurer, I can only see providers in my home state. And one would  think living in a metro as huge as DFW that I’d have access to leading professionals regardless of healthcare discipline. Not true. Just prior to the “shelter in place” orders, I traveled on my own dime and paid my own 3-day visit (including hotel, meals, the appointment itself, and rental car expenses) to a therapist in Montana who specializes in vestibular disorders. This is where I challenge insurers to revisit their plans to provide access to the right specialist, regardless of location. They need to open their minds to treat our suffering and necessary treatments and not place barriers based on geography within the States.
 
In current discussions about the COVID-19 virus, for encephalitis survivors of infectious types, doctors in the UK don’t feel that these patients are at any higher risk that the rest of the population. They did say that auto-immune encephalitis survivors are at higher risk if they are currently undergoing treatment or have concluded treatment in the last 6 months. So if you have AE, please don’t go out unless you are going to a treatment. Please wear gloves and a mask to take necessary precautions. Otherwise, I encourage everyone to shelter in place and don’t take the risk. Ask for help. It’s ok.
 
I wish everyone safety and good health in this unprecedented time. Our first responders are putting their lives on the line. “First responder” has expanded beyond healthcare providers to grocery stores employees, mail and package delivery people, food delivery people, pharmacy staff, educators and those in the position of deciding the best care and precautions to stop the spread of this invisible enemy. Thank you for what you are doing to keep America going.
 
Becky Dennis is the author of Amazon’s top-rated book, Brain Wreck. She is also one of the founders and board president of Encephalitis411.org. 

​While we’re on the topic of hurricanes in the “cone of uncertainty,” let’s talk about how encephalitis (swelling of the brain) mimics this uncertainty. 
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1. ​The unexpected will happen – we’ve been watching Dorian, and he’s quite the beast of destruction while moving at a snail’s pace, making everyone wonder if Dorian will strike them. Encephalitis? Also not predictable. There is no forecast to warn of us this life-destroying illness. Encephalitis can strike anyone…at any age…at any time. No predictive model is going to warn of our approaching “Dorian.”  
2. Preparing – with a hurricane on the horizon, you need to prepare…water for hydration, gas for evacuating, boards to protect your home and toys to occupy the kids. With encephalitis, there is no preparation. It’s not predictable. You’re fine and then … Whoa! Who deleted my memory? Why is the world spinning? Why does my head feel like it’s going to explode?  
3. Every day is unknown territory – the big storm has finally moved on... Except Dorian requires you to replace saturated carpet...repaint walls… repair drywall. Not to mention furniture and belongings that were left floating while you escaped from harm’s way. You don’t know what each day brings. But eventually, you’ll get everything back to normal. Yeah, right. Encephalitis, at best, can take months to reach the “new normal.” But for most, this a life-long battle without standardized treatment, without cure, usually without prevention along with numerous expensive healthcare appointments, without the knowledge, compassion nor insurance coverage…an uncertainty which makes an impacted life a challenge just to keep breathing. Disruptive to life – so the storm-damaged house repairs begin.  And where do you live in the meantime?  A temporary location… far from work or schools… inconvenient because it is smaller…and it has none of your stuff. And like a hurricane, encephalitis is disruptive to life for the patient and all who care for them. Countless doctor appointments, trials of treatment, time off from work (for caregivers, too!), rehabilitation, sometimes re-learning the alphabet and sometimes adjusting to assisted mobility devices. Disruptive? Yeah … I’d say.  
4. Life isn’t quite the same afterward – although the renovated house from Dorian looks better than before, it lacks the familiarity of what “home” really was. Some neighbors vacated because they couldn’t afford to rebuild. Trees and other landmarks are gone, either trashed or carried into the ocean. And like encephalitis, most people are never the same again … can’t go back to work, restricted to a wheelchair, a life of migraines or limited speech or such severe auditory and visual stimuli that we wear sunglasses and noise-reducing headphones. Sad? Eh. Encephalitis survivors are tough and find their way, even if life is altered.
5. The devastation isn’t always visible – houses with trees on the roof. Missing shingles. Cars upside down. Dorian and other hurricanes catch our attention and grab the heartstrings. But plumbing, air conditioning, swollen studs, non-functional electricity and contaminated water are not visible. Encephalitis? Well, it’s not quite visible unless there’s a cane, walker, service dog or other assisting devices. But even with those clues, it’s hard to understand what an encephalitis survivor endures. You can’t see our changes in blood pressure or heart rate. You can’t see our sleep disorders. You can’t fathom our vertigo issues or headaches. So picture us as the foundation of a house after Dorian or other destructive storms … while the house was flooded, every aspect of the house was altered. That’s what encephalitis does to the brain. While it’s inflamed or swollen, destruction is occurring…whether a tropical storm or a Cat-5 hurricane, the damage is real.    
6. Encephalitis strikes 20,000 Americans per year. It is commonly misdiagnosed as flu, stroke, complex migraine or a psychiatric disorder. Follow or join Encephalitis411.org to “Fight Encephalitis Head OnTM!” Enjoy this blog? You might identify closely with more of this story in reading Brain Wreck.

 
Encephalitis411.org wishes those on the East Coast safety … from both life and housing damage. 

Written February 21, 2016 

Encephalitis. What a mouthful of a word. Ever heard of it? I hadn’t heard of this 12-letter word until 6 years ago. When the doctor said it, I kinda shrugged, thinking “thank God it wasn’t a stroke.” His expression changed as he explained that encephalitis is a form of brain injury, quite similar to a stroke.

“Huh?!” He broke down the word for me … encepha = brain and itis = swelling, therefore encepha + itis = swelling/inflammation of the brain.
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It also = life-time change. When the brain is inflamed, all sorts of damage occurs, impairing memory, vision, balance, sleep, cognition, taste/smell, ability to concentrate and well, I could list another 200 residuals that encephalitis survivors report, including personality change.

Why is it so little known? Well, there’s been little research to date and no celebrity endorsement of its devastation. Heard of West Nile Virus? You may not have known that it caused encephalitis in more than 60% of its survivors in the last 5 years. And of those adult survivors, only half had the mental and physical capacity to return to work. Handy piece of info left out of the media hype.

In honor of World Encephalitis Day, February 22, I urge you to share this post in an effort to raise awareness of this horrible illness that strikes 500,000 people each year, and 20,000 and rising here in the U.S.

Why? For each of the 12 letters of encephalitis, here are reasons:

1. 20% of patients die
2. It causes chronic neurological disorders
3. It leaves many families in financial ruin
4. There is no cure
5. It’s hard to diagnose
6. There is no specific treatment*
7. Most causes are unknown
8. Delayed diagnosis can impact mortality*
9. It can impact anyone at any age at any time – yes … you, too
10. Current hospital costs in the U.S. alone are $2 BILLION a year
11. Imaging is often inconclusive, sending some very ill patients home as “crazy” or “normal” when there are actually serious underlying issues
12. More than 65% of survivors have issues with relationships and/or social settings** due to changes in the brain

​To my fellow survivors, here’s to you for celebrating World Encephalitis Day … we survived! With its challenges, understood. And to the caregivers and medical teams who provide outstanding care in the face of this chronic trial, we honor you … your patience, compassion and sacrifices. Thanks to the Encephalitis Society for putting World E Day on the map!
 
* If the etiology (cause) is the herpes zoster or varicella (chickenpox) virus, Acyclovir is very effective at preventing death if administered within the first 48 hours
 
** According to a 2012 Encephalitis Global, Inc. and Inspire.com survey/report from encephalitis patients: [https://www.inspire.com/static/inspire/reports/inspire-encephalitis-global-fighting-encephalitis.pdf]

Since hearing about Robin Williams’ death, I’ve been stunned at my reaction. How can I grieve over someone I never knew? I’ve paused to notice the richness he represents in influencing me and how his tragic death shakes me.
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​Here are 6 things I’ve come to realize because of Robin Williams:

1. Depression doesn’t discriminate. By most people’s definition, Robin Williams was wildly successful and had much to celebrate. However, “things” and accomplishments don’t define us nor do they “fix” depression. We are all human, even those we put on the pedestal who we want to think are flawless and free from darkness.
2. Doctors’ greatest assets are humility and tenacity. In the true story of “Awakenings,” Williams plays Dr. Leo Sayer, a doctor whose diligence discovers a commonality among his catatonic patients. Encephalitis (swelling of the brain) is that common denominator and Williams works feverishly to find treatments for “these people who are alive inside.” Williams’ and Robert DeNiro’s stunning performances brought awareness to encephalitis, a brain injury that affects 20,000 Americans per year and taught us that we all count – even those who cannot speak for themselves.
3. Laughter is a misleading medicine. Robin Williams mastered the ability to tickle our funny bone. His humor protected his heart as best he could while accepting the overwhelming responsibility of charming the world, even when he was suffering inside. My lesson from him is that I’ll listen more carefully to loved ones who divert from a fragile moment and respond instead with humor.
4. Robin Williams’ characters shaped me. I’m thankful that Williams chose such moving characters as the English teacher in “Dead Poets Society” who led students by example or the therapist in “Good Will Hunting” who helped a young man reach his potential. His performances made these characters real and someone to aspire to be more like. These two movies shaped my thinking in how I want to emulate his ability to impact someone’s life.
5. Suffering from depression shouldn’t be shameful. Although it’s not a weakness, depression is widely treated as such. Williams’ disclosure of depression, alcoholism and drug abuse are both brave and admirable as he didn’t tie shame to these personal battles. As a public figure, Williams had a choice in revealing them, and I believe his willingness to acknowledge these credits his character and is a gift to us all.
6. Robin Williams walked the walk. Williams gave freely and “paid it forward” in his philanthropic interests to support Veterans, the homeless and literacy. He also founded his own foundation to support charities. Sharing wealth and walking the walk, such as Williams’ performances around the world for soldiers, signifies a selflessness that reveals his real heart. His altruistic example reinforces my commitment to pay back.

 
Thank you, Robin Williams, for inspiring us. For entertaining us. For teaching us. For leading by example. For raising awareness about encephalitis. For choosing meaningful roles that guide our thinking. I pray that you have risen above your pain.