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Independence Day!

Independence Day!

June 29, 2022 | By Jeri Gore

If you have Autoimmune Encephalitis or are a loved one or caregiver of someone with AE, you know dependance. The AE Warrior is dependent. We are dependent on many things be it friend’s and family’s ability to take us to doctor’s appointments, rehab, food stores or for a simple ride around the countryside. We are dependent on canes and walkers, computers, and sign language for communication. We can be dependent on stair or wheelchair lifts. We are dependent on medical teams to understand AE and suggest best treatment options. We are dependent on our AE family as a community to get us thru a particularly bad day or week or month. We are dependent on the minds and hearts of others to help, accept, understand, and love us.

If you live in the United States, you know July 4th, every year, is a national holiday. It is Independence Day. It is a day much celebrated with family or friends, with fireworks and cooking out. It is a day of fun and laughter and overall joyful celebration.

If you are an AE Warrior, you know the need and desire for independence. Our dependence on the many things we need to survive AE may not have been on our mental radar before AE took over our lives in one form or another. For an AE Warrior, independence may mean many things. It may mean not needing someone’s help to turn on the lights or start your computer. It may mean no longer requiring a cane to be able to walk. It may mean no longer needing one infusion or another. For me, independence was the ability to drive again. That day is forever seared into my brain. I felt like driving down some country road, windows wide open, sun on my face and singing at the top of my lungs. It also came when I was once again able to concentrate enough to be able to read and understand a book. I felt like I had conquered a giant mountain!! I felt independence and it felt good, really good! I wanted to shout it from a mountain top!

In the spirit of celebration, I suggest we honor our AE independences big and small. We may or may not celebrate with cook outs and fireworks but maybe a little ‘happy’ dance in the kitchen or phone call to a loved one. May we learn to commemorate those small and large events that mark progress in our AE journey. This may not be easy some days but maybe, just maybe if we celebrate these small milestones of progress, it will help propel us onward on those other days when forward progress seems slow or nonexistent.

Happy AE Independence Day to all of you AE Warriors, loved ones and caregivers!!

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On June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

 

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Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org    

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists patients from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to support research, raise awareness and personally help patients, families, and caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.  Trivia Playing cards 3 FB 500x419 - Independence Day! For those interested in autoimmune encephalitis clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.   AE Warrior Store 300x200 - Independence Day! 

Be a part of the solution by supporting IAES with a donation today.

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A Happy Ending for Surprise Diagnosis for One Doctor by Another Doctor from a Land Far Far Away

A Happy Ending for Surprise Diagnosis for One Doctor by Another Doctor from a Land Far Far Away

June 23, 2022 | By Mozna Osman

Introduction from the IAES Blog Team:

IAES is proud to present to you the AE story of a doctor that truly exemplifies our international impact! We hope you find this as inspirational as we have.

—–

I am a family medical doctor living and practicing medicine in Khartoum, Sudan. My story began about three years ago when I realized I was often feeling very tired and had terrible headaches. I decided to go and get my own blood work analyzed to see if there were any obvious issues going on. What I found out was that I had Malaria and a UTI (urinary tract infection). As a doctor, I decided to go ahead and treat myself with the appropriate medications needed for both issues.

I thought I was doing well and, on the mend, but I was not. Not long after this, my son found me, unresponsive, on the floor. I was admitted into the intensive care unit (ICU) of a local hospital and was in a coma for a month. As luck would have it, a visiting doctor from Chicago was asked to review my case. After reviewing my medical chart, he diagnosed me with anti-NMDA Autoimmune Encephalitis. He suggested a course of treatment that included medication and plasmapheresis. I feel very fortunate and blessed to have had my case reviewed by a doctor from so far away.

I am now feeling much but better but I still suffer from memory issues like many patients with AE. My short memory seems more affected by AE than my long-term memory but is getting much better. I am happy to report I am back to practicing medicine and am working at AL-Shaheed Wedatallah Medical Center in Khartoum. I am hoping for a bright, happy, and healthy future.

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Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

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For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

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Be a part of the solution by supporting IAES with a donation today.

 

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Jackie Stebbins’ Book Release – Unwillable

Jackie Stebbins’ Book Release – Unwillable

June 8, 2022 | By Jackie Stebbins

Introduction from the IAES Blog Team:

Autoimmune Encephalitis Warrior and now author, Jackie Stebbins, released her first book regarding her AE journey to great acclaim in early June 2022! We are proud to support Jackie, to further AE awareness and to celebrate a very happy ending! Jackie’s book can be purchased on Amazon here.

—–

In some ways, I still cannot believe it’s true. I published a book! Susannah Cahalan, author of Brain on Fire, says Unwillable is “as moving as it is important.”

As I write this, it’s June 5, 2022. That means exactly four years ago, I took my place in a wing of a clinic in Bismarck, North Dakota, full of overstuffed, brown chairs and IV poles behind them. I was there for my first IV steroid treatment, to hopefully turn my brain back on from autoimmune encephalitis (AE).

As I sat in the recliner, broken from a violent seizure, lost from the past few months of hell, and still in a cognitive fog, my family prayed that the steroids pumped through my body could save my ailing brain. And in a grand stroke of luck, the steroids did almost immediately save me. My life was quickly turned around again, but so much had already been lost. Damage was done.

282611734 819445159443008 7686218785706316893 n - Jackie Stebbins' Book Release - UnwillableMy husband took a photo of me that day. My eyes look tired, afraid, and lost. Four years later, I see that same tired, scared woman, but I want to hug her and tell her: It’s okay. This story has a happy ending.

The capstone of the AE journey I’ve been on is the publication of my memoir, Unwillable: A Journey to Reclaim My Brain. On June 1, 2022, Unwillable was officially launched and is available for purchase on Amazon.For me, this is one of the happiest outcomes I could have ever imagined after the past years of grief, loss, imbalance, heartache, tears, and life’s drastic changes. Unwillable was a way for me to process my trauma, share my feelings, and hopefully, help spread awareness about the illness that almost ended my life.

AE is a disease that devastates and destroys those in its path. Until we have standardized treatment, a cure, and no one else ever again suffers from this monster, the best we have is hope. Hope for better days ahead and dreams of an AE-free world. 

Wherever you and your family are in your journey with AE, it is my sincere hope that Unwillable finds a way to your heart and helps you in your struggles. 

In solidarity, 

Jackie M. Stebbins, Esq.

jmstebbins.com

unwillable.com

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Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

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For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

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Be a part of the solution by supporting IAES with a donation today.

 

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Psychosis or Something More? A Family’s Search for Answers

Psychosis or Something More? A Family’s Search for Answers

May 26, 2022 | By Libya Matney

Introduction from the IAES Blog Team:

The International Autoimmune Encephalitis Society is proud to present to you the AE story of one of our mighty Warriors in her own words, an article written about her AE path in the University of Arkansas newspaper (link below) and beautiful artwork given to her by a wonderful friend and artist depicting her within the struggle of this devastating diagnosis!

 

As a 21-year-old stay at home mom to a precious little boy, Benjamin, I never thought that something so life-altering would happen to me. My husband and I had spent 9 months trying to conceive our second child. Finally, in June of 2021, we were able to get pregnant. Around the same time, many random things started happening to my body. Nobody understood what was happening. My scalp was burning, I had chronic migraines, confusion, insomnia, OCD tendencies, and I started showing aggression towards my family. All these things seemed to begin to rule my life. I began cleaning my house aggressively and trying to get rid of everything that I own. I would tear things out of the closets and try to reorganize them at the same time. I was exhausted. I was forgetting everything. I began to believe that I couldn’t be left alone to take care of my son. My family and friends began taking turns staying with me during the day. At this point I had been to the doctor several times and had multiple blood tests and two CT scans. Everything came back normal.

On August 19th, 2021, my husband and mother-in-law decided to take me to a hospital in Fayetteville, Arkansas (AR) to see if they could figure out what was happening to me. They performed the same blood tests and scans that I had received previously and, of course, they came back normal. On the way home from the hospital that day, I had what the doctors would call a “psychotic break”. I began kicking and hitting my husband in the car and trying to open the door to get out. My husband and mother-in-law frantically called my mom. She said that she could hear my husband in the background begging me to stop. My mom told them that she was on her way to us and to call 911. When the police and Emergency Medical Services (EMS) arrived, my mom had my doctor on the phone to convince them that something was medically wrong with me and that I needed to be taken to the emergency room (ER). When EMS tried to get me to the gurney I dropped to the ground. They had to lift me onto the gurney and into the ambulance. This was when I was transported to the ER in my hometown, North Arkansas Regional Medical Center (NARMC). The last thing I remember from that fateful day was stopping in a restaurant parking lot and trying to get out of the car. I don’t remember the police or paramedics being there. I don’t remember anything from the rest of that day or the month that followed.

My family has told me that while I was in the ER, I kept trying to leave. I would fight the medical staff and my family so hard that they had to restrain my arms and legs to keep me from getting out of bed or hurting myself. During the 4 days that I was in the ER at NARMC, I had a CT scan, an MRI, a spinal tap, and multiple blood tests done. I ended up miscarrying my child the last day that I was there. I was transferred to St. Bernard’s Medical Center in Jonesboro, AR on August 23rd, 2021. During the transfer, I slipped into an unresponsive/catatonic state. A procedure was performed to remove the tissue from the fetus, as well as the same testing that had previously been done in the ER. Other testing that was done consisted of EEGs and ultrasounds. Six days after being transferred I was placed on a ventilator because of having back-to-back seizures and my heart stopping. After two weeks of having no nourishment besides IV fluids, a feeding tube was also placed in my nose. I was in St. Bernard’s for a month before they sent my blood and spinal fluid to Mayo Clinic. An infectious disease doctor diagnosed me with anti-NMDA Receptor Autoimmune Encephalitis and GFAP. A few days before I left St. Bernard’s, I woke up with a feeding tube still in my nose. I did not know the month, day, or what was happening. I couldn’t walk or use the right upper side of my body. Also, due to having been on the ventilator and having the feeding tube, I could not talk. I was given a letterboard to communicate and the first thing that I asked about was my pregnancy. I couldn’t remember miscarrying the baby. On September 22nd, I was transferred to Barnes Jewish Hospital in St. Louis, Mo. Doctors began plasmapheresis (plasma exchange).  During the 10 days that I was there I received 5 rounds of it. I had another MRI, EEG, spinal tap, and two ultrasounds during my stay there.  Blood and spinal fluid samples were sent to Mayo Clinic to be rechecked. On October 1st, I was moved to Everest Rehabilitation Center in Rogers, AR, where I spent every day in physical, occupational, and speech therapy. I had to relearn how to walk, and I had to regain my physical strength and my voice. My last week at the rehab center, I finally got to see my son, Benjamin, after not seeing him for over a month. They included him in my physical and occupational therapy. On October 19th, two months after being taken to the first hospital, I was released to finally go home. When I got home, I started outpatient physical therapy at Mount Carmel Physical Therapy Center in Harrison, AR. I had physical therapy twice a week for 8 weeks. In January of 2022, I had two rounds of Rituxan infusions.

I am now back home with husband and son, and I can enjoy spending time with my family and friends once again. My life will never be the same after my AE diagnosis. I will always have to keep tabs on my stress levels and watch for signs of relapse. I still have months before I can drive again and am still at risk for seizures. However, I have learned a lot the past year. I’ve been cared for by people that will forever hold a place in my heart. I’ve grown, I’ve changed, and I am thankful for the life and family that God has blessed me with. 

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Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

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For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

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Be a part of the solution by supporting IAES with a donation today.

 

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The Darkness of a Brain on Fire

The Darkness of a Brain on Fire

April 27, 2022 | By Chelsea Wagner

 

CW 3516 375x500 - The Darkness of a Brain on FireNumbers, numbers, numbers – we all have them. It’s how we organize and make sense of what’s happened to us. It is how we put our experiences into boxes so that they don’t spill over into every aspect of our lives.

For me it was 1,000 mg of steroids, 7 Plasmapheresis infusions, 6 EEG’s, 5 MRIs, 4 CT scans, 1 PET scan, 1 botched lumbar puncture, 1 traumatizing bedside central line insertion, and countless fascinated residents, fellows, and physicians who had no idea what was happening to me right in front of them. All those numbers were packed into a 31-day hospital stay split between 2 hospitals in the largest medical center in the world. And those numbers lead me here, to you, to the Autoimmune Encephalitis community.

During February 2019, I began to experience subtle signs and had an overwhelming feeling that something was “off” with myself. I had trouble spelling words, remembering passwords and even had trouble speaking with patients I saw as a genetic counselor. I began experiencing extreme anxiety, panic attacks, and other neurological symptoms. I would eventually go to the ER after my doctor discovered a right sided facial droop, fearing that I was having a stroke, I was admitted to the first of 2 hospitals.

During my lengthy stay on the stroke recovery unit (the youngest person by several decades), the doctors would be puzzled by my progressing symptoms and my eventual catatonic state. I lost the ability to speak, read, and write. After being placed on high-dose steroids, I became violent and turned into what the nurses and my family would call the “she-hulk” and throw objects, kick walls, and wrestle with hospital staff as they put restraints on my ankles and wrists and bound me to my hospital bed for days at a time. During this time, I would become a prisoner of my own mind. I endured auditory and visual hallucinations of my worst nightmares and lived in multiple alternate realities, many of which included me dying. I would return to reality for only brief periods of lucid time – although I could not speak or recognize my family, the terror and confusion were respite to what was happening inside of my mind. 

Eventually, the first facility would diagnose me with seronegative autoimmune encephalitis – but did not implement the well established treatment for AE – and I was sent home from the first hospital on a steroid taper with no attempt at plasmapheresis exchange or IVIG. The doctors were frustrated with me and with what little I was able to comprehend. They had given up on me regaining any semblance of normal cognitive function. They told my husband and family that I’d go home and I’d either “get better, or I wouldn’t.”

I didn’t. In fact, I was actively hallucinating as they discharged me from my first hospital and then spent an interim week drifting in and out of reality – barely able to communicate, having dystonic movements and absence seizures. I was clearly getting worse. I was fortunate enough to have personal connections to another hospital due to my job as a genetic counselor in the medical center. I was rushed in for a same day appointment with a leading neurologist in Autoimmune Encephalitis and admitted directly from her clinic to my second hospital.

After receiving the first of seven plasmapheresis exchange treatments, it was like a fog was lifted. Blobs of strange people began to take the shape of my husband, my mom, my friends and family. I found my voice, although Broca’s aphasia made it hard to communicate, I started making progress in speech and occupational therapy. Everyday it felt like fireworks were going off in my brain – the zing of new neural connections being made – I would tell my therapists “I can feel it in my brain” – every sense heightened, every new word remembered became a cause for celebration, every step around the ward was a sign of my physical strength returning. Who would have guessed the exhilaration of holding a crayon in my hand could bring, or the relief of hearing my name and knowing it was mine? The doctors were impressed and optimistic about my recovery, but no one could predict how much cognitive function I would regain.  I was told I would likely never be the same person I was before. And in so many ways that is true.

CW 7606 375x500 - The Darkness of a Brain on FireEven after my second discharge, I had months of speech therapy, occupational therapy, and cognitive rehabilitation. I lost most of my independence – depending on everyone around me to drive me everywhere, make follow-up appointments, pay my bills because reading words on a screen was akin to reading hieroglyphics. I felt, at my worst, like a burden to those around me, weighed down by guilt and shame of the upheaval I had caused in our lives. I felt lost in my professional life, unsure of who I was or what I contributed to a society where my 19 years of education did not triumph over my brain trauma. I felt alone, because no one had been inside my mind and could understand exactly what I had been through: how harrowing, how terrifying, how humbling, it is to stand on the brink of insanity and be brought back from the darkness of a brain on fire.

No one except this community – reading your experiences, your struggles, your triumphs – they connect me in a way I never thought I would be able to connect and helped me understand my singular experience is part of a larger community experience. Almost three years later, I have returned to my full-time job as a genetic counselor and help patients navigate an overly-complicated and often frustrating healthcare system that I am all too familiar with. My compassion and empathy for those struggling with a diagnosis, finding resources, and advocating for themselves abounds. And I am grateful to be here, to be able to return to my career, to recognize my husband’s face, to be alive, to be typing these words. I know that when I lay awake at night (because, hello, insomnia!) thinking of how everything has changed for me since AE – there is light, there is hope, there is resilience, there is grit, there is strength in me. All it takes is a brain on fire to illuminate it.

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Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - The Darkness of a Brain on Fire

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - The Darkness of a Brain on Fire 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

 

What happens when your autoimmune encephalitis treatments aren’t working?

What happens when your autoimmune encephalitis treatments aren’t working?

April 13, 2022 | By WhereAreMyPillows.com

Message from the IAES Blog Staff: 

We are pleased to share with you that Where Are My Pillows has returned to her blogging game! The post below touches on the shared challenges of autoimmune encephalitis patients who relapse or whose inflammation remains refractory to first- or second-line treatments. Please join us in wishing her full success ahead as she embarks on the next chapter of her healing journey!

—–

This post is part of the recurring #WhereAreMyPillows blog column for the International Autoimmune Encephalitis Society and is adapted from a blog originally published on  www.wherearemypillows.com.

Introduction

Q: What happens when your autoimmune encephalitis treatments aren’t working?

A: You relinquish all unnecessary obligations, neglect your blog, and trade your human friends for Squishmallows who think no less of you for spending hours on end in bed.

wherearemypillows squishmallows 500x500 - What happens when your autoimmune encephalitis treatments aren't working?

Friends who don’t mind doubling as pillows—now those are real keepers.

Joking aside, it’s an exhausting and demoralizing road. While being diagnosed with autoimmune encephalitis (AE) in the first place is scary, failing treatments that normally give people their lives back is despairing. Recognition of the failure is slow. You’re told to hang tight and be patient for the immune system to adjust; but as months pass by without sustained improvements, the feeling that something is wrong begins to take hold.

The following runs through your head: Am I overreacting? Do I have permanent damage? Can this situation be salvaged? Will it be like this forever? Can I just give up and resign from this reality?

Embracing trial and error, and being fed up with the status quo

If you’re lucky, you have a doctor that realizes just how pernicious AE—brain inflammation—can be. More importantly, they realize they have multiple tools at their disposal to treat it and take responsibility for actually wielding them.

This can mean going beyond steroids, beyond IVIG, and sometimes even beyond rituximab (Rituxan). As far as I can tell, the doctors who create the best outcomes for their patients recognize that the amount of medications required is highly individual and that treatment responses are not always trackable via standard tests, especially for complex diseases like AE. And treating AE is ultimately a game of trial and error—part science, part art. The research can only run so deep for a rare disease that just started receiving attention in 2005.

Since I was diagnosed with AE in the summer of 2019, I’ve been put on methylprednisolone (Solu-Medrol), IVIG, Rituxan, plasmapheresis, and tocilizumab (Actemra) at varying doses, intervals, and timeframes. And just recently, I started mycophenolate mofetil (Cellcept) and received an infusion of cyclophosphamide (Cytoxan).

None of these are a surprising choice of therapies; they are all described in the medical literature as appropriate treatment options for autoimmune encephalitis. But what IS surprising to most people is that my doctors are actually:

  1. exercising all these options;
  2. overlapping some of them; and/or
  3. bothering to still treat me at all, given the protracted course of my illness (which began in 2014) and the fact I can still walk and talk.

It should not be surprising, but it is given the current paradigm of (arguably) conservative treatment that the average patient is offered. And sadly, a nontrivial subset of these surprised people are patients/caregivers that are still struggling, face seemingly impossible medical barriers, and rightfully suspect that there could be benefit from further treatment due to signs that their or their loved one’s inflammation is poorly controlled.

It’s heartbreaking to hear these stories and realize how easily I could be circling that drain.

That’s actually why I’m forcing myself to grind through the cognitive fog and write again. Some recent conversations have reminded me of how many people are needlessly struggling with obstacles on their AE journey, ones that can bypass others completely, all because of some stroke of dumb luck such as:

  1. The first doctor that saw the patient in the emergency room performed a spinal tap and believed the issue was neurologic rather than psychiatric.
  2. The patient lives in province/state “X” where a critical medication is on the formulary covered by the government/insurance plan—not province/state “Y” where a critical medication requires special authorization and is typically denied.
  3. The previously seronegative patient turned seropositive during a relapse, suddenly lending credibility to the diagnosis and making treatments more accessible.

wherearemypillows treatment chair 500x375 - What happens when your autoimmune encephalitis treatments aren't working?

While the field of autoimmune neurology is relatively new, it is not so new that one different roll of the dice should be able to dictate the outcome of a patient so profoundly.  It is unsettling how many more junctures my own AE journey could have been derailed at, the above bullet points being just a sampling.

There is clearly a need for greater physician awareness, better standards of care, and shifts to the present paradigm of treatment. And the more that patients/caregivers challenge the status quo, the sooner that change will come.

My goal in speaking out is to help level the playing field for those being caught in the AE quicksand. I’m far from the only person out there who deserves the opportunity to take another shot at permanent recovery. To those that have humbled me by sharing your stories or provided encouragement for me to keep plodding forward, thanks for galvanizing me into ending a four month writing hiatus.

Reexamining the mechanisms underlying autoimmunity

As mentioned above: I recently started Cellcept and Cytoxan in an effort to pull me out of my relapse that began in spring 2021. We had added Actemra to my regimen in July, hoping that would turn things around; but after 5 monthly infusions with transient improvements only and no compounding benefits, my primary neurologist agreed to pull me back into the hospital for plasmapheresis. It had worked beautifully for me in January 2021 and we were hopeful another 5 rounds over 10 days would work the same the second time around.

It turned out to be a bust. I’m glad I went through with it though; otherwise, I would always wonder whether plasmapheresis paired with stronger maintenance therapy would be a viable solution, rather than having to progress to chemotherapy. Again, it goes back to that whole “trial and error” concept. You evaluate the options based on your unique clinical scenario, make a strategic decision, compare the results with existing scientific knowledge, and synthesize all available data to inform your next steps. Along the way, you progressively refine your mental models.

But that’s not the approach you’ll find all doctors using. A few years back, my treatments were stalled by the terribly ignorant no detectable antibody = no autoimmune encephalitis explanation. Somewhere in the middle, it was the poorly reasoned it’s impossible to relapse on Rituxan you probably never had encephalitis but rather just have adult ADHD explanation. And now, several doctors later—and after scoring 2 standard deviations higher on an IQ test as a direct result of plasmapheresis, not psychostimulants used to treat an attention disorder—we’ve landed on an explanation that contains a couple more shreds of logic.

The doctor in charge of my current treatment plan is a neuro-oncologist who, in addition to cancer, treats a number of autoimmune conditions beyond just AE including myasthenia gravis and neuromyelitis optica. He explained to me in simplistic terms that when it comes to autoimmune neurological diseases, he looks at the individual and in broad strokes considers how much of the immune dysfunction is antibody-mediated/humoral vs. how much is cell-mediated. Response to treatment can provide clues.

IVIG, Rituxan, and plasmapheresis are known to be most effective for addressing antibody-mediated autoimmunity; since I’ve had diminishing returns from these treatments over the past few years, he suspects a significant proportion of my autoimmunity is now cell-mediated. This would also fit with the theory that I have GAD65 encephalitis, which is thought to involve a T-cell mediated immune response. While the call is debatable, both him and my other neurologist consider me a true GAD65 positive patient now rather than a seronegative one, as the antibody appeared in my serum and rose in titre on the 3 occasions we checked last year. Either way, my primary doc is confident that it’s time to move on to medications that target both B AND T cells—in my specific case, Cellcept and a Cytoxan.

Now, I am not a medical professional who can responsibly assess the validity of this framework; but this neuro-oncologist is well-respected amongst his peers, and the rationale for his decisions make a hell of a lot more sense to me than the ones provided to me by other doctors in the past.  While Rituxan initially got me back to baseline in 2019 and is a highly effective, permanent solution for many patients, it upsets me when doctors are adamant that Rituxan is a magic bullet for treating AE and that any ongoing symptoms absolutely cannot be due to uncontrolled brain inflammation. Or said a little differently: if your previous AE symptoms return but your CD19 test results are at 0, your AE is well-managed and we’ve finished our job. This hard-and-fast conclusion seems incredibly irresponsible and lazy to me, when even a cursory glance through the medical literature yields hundreds of articles discussing the utility of alternative treatment strategies across a number of AE scenarios.

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Moving forward

The takeaway here is that if you are dealing with ongoing levels of significant dysfunction, experienced a period of relative normalcy followed by a return of disabling symptoms, or your specialist has limited experience with treating AE, there may be further runway to explore.

I say that with a note of caution, being careful to acknowledge not everyone is going to benefit from seeking further treatment and some are already working with wonderful doctors who are truly doing everything they feasibly can. But judging from going through 12 neurologists myself and hearing the experiences of hundreds of patients/caregivers, chances are your doctors may not have painted the full picture of the options out there. There is more to the immune system and the mechanisms underlying autoimmunity than what the average neurologist appreciates.

If you want to explore other options or doctors, take some time to educate yourself first. Otherwise, it’s going to be hard to effectively advocate for yourself or your loved one. Without slogging through research publications, listening to the experts in the field, and/or joining support groups (like the International Autoimmune Encephalitis Society Facebook group to hear from others living with this illness, you tend to reach a ceiling on how far you can get. Alternatively, you might gain reassuring perspectives that help you realize your team of doctors is already handling everything appropriately.

As for me, I’ll be doing my best to keep advocating for AE awareness and better outcomes while I recover in the months ahead. You can also expect to see me popping up more regularly in online support groups and social media—see you over there! 😉

For more insight into what living with autoimmune encephalitis looks like, read more at my blog below or find me on InstagramFacebook, or Twitter.

wherearemypillows bio

WhereAreMyPillows is an autoimmune encephalitis survivor from Canada. Her favourite activities include writing on her health blog, taking photos, doing yoga, and finding her next spot to take a nap. 

Join her on the IAES Facebook group, and on her WhereAreMyPillows Facebook PageInstagram and Twitter #wherearemypillows

 

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Become an advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

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For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

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Through the Eyes of Mom

Through the Eyes of Mom

March 23, 2022 |By Luz Neira Alvarez

A message from the IAES blog staff:

The staff at IAES is proud to present to you a poetically and beautifully written blog from a mother to a daughter with AE! This shines a light on the heartbreak, caring and love AE brings forth in those that care about us most!

 ——–

The wind caressed your face in the freedom, flying was your passion, not just living every day for 12 years, but imbuing passion in your brush strokes, mixing colors was your entertainment, how can you not reminisce about fulfilling the limits of your imagination, you created more than a surprising image. Keeping your body constantly in motion freed ideas, you visited new and beautiful paths, constantly envisioning and planning but….

Little dove from a thousand and one stories…. who interrupted your path? I don’t often see your amazing characteristics anymore. I have been waiting for a long time for your visits, your song, your magical touch on the paper when you flap your wings. I’m tired of waiting and you have not returned. In my dreams I hear your singing, sad and confused but faint. In your stead someone else has arrived. It looks like you, but I look, and I look again and question if it’s you. And if it is you, you have come back hurt, hard to recognize and with a white feather on your head. Suddenly, I could see in your eyes a flame and I could see how your brain was engulfed by it. What is happening? I asked. I hugged you and I could enter an unknown world. I could see how you ran, and the fear took over you. I could see how your heartbeat desperately and all your organs were affected. You wanted to be in control of everything, but it was impossible. The uncontrollable movements did not leave you alone for a second. Everything was different. I could see how your shaking made it so that your color mixes and brush strokes went the opposite direction than what you desired. Your emotions were confusing, but no more description is necessary. Just by looking at you I could see how you fought so many obstacles trying to fight for yourself, but you couldn’t. I started to try to understand what you were going through but it was hard. Even through the unknown, I vowed to help you out of this situation. I looked at one of your legs, stiff and rigid. I tried to move them, and I found a two-letter message, A.E. It can’t be! That was my reaction, but I wasn’t afraid. When I finally understood it’s meaning, I understood your reality. Since that moment, I haven’t stopped fighting for you. I sheltered you with my faith and I declared with the love of a mother that the giver of your life you re-create each part of you. It would take some time, but so it has been.

I’ve flown with you to different places with hope. You have endured painful situations, but I see your scars starting to heal.

Today, I can see how my little giant, with scars all over your body and brain, has re-learned everything again. To me, this is not an obstacle but an opportunity to do it again, and better than the first time.

You get up and have problems walking. Sometimes you hurt yourself again, but we help you get back on your feet. Today, I see your feathers, hopes, dreams, courage, strength, and desire to live.

You are the paint for those that need art in their life. Your experience becomes the path to understanding for the new birds following you. Your strength motivates those that need it the most. Your life shows the entire world that there is no limit for human beings. It shows that starting again is an opportunity, that our differences are what makes us unique, that our weaknesses become strengths.

Strength! We are not alone. We are the best warriors and protagonists in this unknown world.

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Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

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For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

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Be a part of the solution by supporting IAES with a donation today.

 

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Falling through the looking glass…

Falling through the looking glass…


March 9, 2022 | by Rachael Muggleton

In May of 2020, I was a healthy, vibrant, smart, loving, pre-med student at Penn State, nicknamed the ‘mayor’ of my large friend network … until I fell acutely ill. Within 7 days of hospital admission, for what seemed like some type of stress induced altered mental status, I became catatonic. My mom watched in horror as her daughter’s light rapidly dimmed; losing a piece of what defined me each day. By day 7, I no longer spoke or appeared to recognize anyone, my heart rate became unstable, I could no longer walk or eat, and my kidneys began to fail. I was rushed to the University of Rochester Medical Center (URMC) with a preliminary diagnosis of Anti-NMDAr Autoimmune Encephalitis (AE) – an illness my family had never heard of, but one unfortunately they would get to know very well over the next six months of my horrific journey. 

IMG 5128 225x300 - Falling through the looking glass...Full disclosure — this part of my story comes from my mom; I don’t remember anything from my admission until fuzzy memories of my time in inpatient rehab 5 months later. By the time I reached URMC I was catatonic, seizures were starting to take over. My mother described the surreal experience as ‘seeing our beautiful Rachie rapidly falling through the AE ‘looking glass’ – a tumbling, bouncing, free fall which lasted for days, weeks, eventually resulting with me being placed on life support for months’. 

Timing is everything, right?! It was during COVID lockdown, visitation was not allowed. My family was no longer able to be by my side. For 42 days, physicians and nurses cared for me while in a medically induced coma; trying to quell the relentless seizures. My mom sat on the virtual sidelines, distraught, making decisions regarding PIC lines, arterial lines, sedation, feeding tubes and a tracheostomy – decisions she never imagined she’d be making for her child, who outside of a tonsillectomy, was the picture of health. Without the communication, compassion, trust and love I received from the URMC team, my mother said she wasn’t so sure she would have been able to get through those first 42 days. They were her eyes, ears, and most importantly, heart. 

IMG 5127 225x300 - Falling through the looking glass...When restrictions finally lifted and my parents were able to be by my side, they witnessed firsthand what a cruel, relentless illness AE was. There is no official playbook. My mom, a person who prefers order and predictability, was at a loss watching the team trying to control an illness that twisted and turned, never letting up. AE laughed at us and didn’t care how desperately we wanted it to release its grip. During this acute phase, one of my Neuro-intensivists explained his view on Anti-NMDAr AE (after treating a handful of cases each year) to my mom – ‘It comes out of nowhere, attacks HARD, stays as long as it pleases, eventually leaves, rarely returns. Our job is to treat Rachael with what we know works and keep her alive until it leaves”, and they did just that. I received steroids, plasma pheresis, IVIG, Rituxan and when things still seemed to be stalled, Cytoxan. I was also placed on a strict KETO diet, which in some pediatric patients has been proven effective in reducing/eliminating certain type of seizure activity. 

By mid-August of 2020, my mom tells me, “Our ‘Alice’ ended her free fall and SLOWLY started to reemerge!”. Day by day, small pieces of me started coming back. Eventually, the ICU staff took me out to the children’s garden at URMC (safety protocols in place (!)) to see my brother Andrew for the first time in 4 months (pictured)! 

My family and team celebrated each breath on my own, swallow of water, baby step, new word, and smile! When it was finally time to leave my nurturing Neuro-ICU ‘nest’, the team through me a dance party — sending me off to inpatient rehab in style! Since I have no memory of that time, I’m thankful it was recorded! Taylor Swift’s ‘Shake it Up’ will forever rock as my survival song 😊! 

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My dance party send off!

I was released from the hospital in October 2020, just short of 6 months. While my journey was far from over, I was on my way! I still needed to be weaned (carefully) from 8 different anti-seizure medications, regain my cognitive functions and physical strength and dexterity. Through the work of an amazing rehab team and sheer determination, I made my way back. By the summer of 2021, I was taking college calculus II and preparing for my college return in the fall. 

IMG 4404 225x300 - Falling through the looking glass...But here’s the best part of my story! In December 2021, I spent a week in the URMC Neuro-ICU, only this time NOT as a patient but rather to shadow the amazing physicians, nurses and professionals to learn firsthand the world of intensive care neurology. As a result of this shadowing, I’m sure they hope I choose Neurology as my specialty (maybe?!), but FAR more was gained from this experience! Rarely do providers, nurses, and staff get to see the results of their amazing efforts, and a recovered AE patient rarely gets to come back to see their heroes in action — Life came full circle. 

I finished my fall semester (Deans List!) and as I write this, and I’ve returned for my final semester at Penn State. I’ll begin studying for the MCATS with the goal of medical school in 2023 (maybe URMC?  😊). Autoimmune Encephalitis was a cruel thief who tried to steal me and subsequently a year of my life, but as the Mad Hatter said to Alice, ‘If you knew time as well as I do, you wouldn’t talk about wasting it’. I’m not about to waste it!! 

My mom reminds me often; I have a story to tell! I think it’s a story of a young woman falling through the looking glass — finding beauty, love, compassion, and competence all along her journey. However, her name isn’t Alice, it’s Rachael. 

Never. Lose. Hope ❤️. 

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August 2021, me, mom, and stepsister Kaitlyn 

 

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Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

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For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

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Be a part of the solution by supporting IAES with a donation today.

 

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Letters to Our Before AE Selves, Part II

Letters to Our Before AE Selves, Part II

February 22, 2022 | AE Awareness Month Special Series

Introduction from the IAES Blog Team:

Welcome to Part II of the IAES Blog series for AE Awareness month 2022; Letters to Our Before AE Selves. We are privileged to present the following heartfelt letters written by AE patients (AE Warriors) and caregivers to themselves, or the loved one they care for.

The following compilation of letters expresses the thoughts and feelings we would write to our ‘Before Autoimmune Encephalitis’ selves. They express what we would want ourselves to know, or our loved ones to know, if we could have been given a foreshadowing of how our lives would be pivoted on its axis due to autoimmune encephalitis.

Some letters are from our loved ones to us, and some are from us to ourselves. Long or short, happy or sad, all are heartfelt and are sure to lift your spirits. We hope you thoroughly enjoy Part II of this two-part series.

~

The first letter we share is from IAES member and AE Warrior Angie Fitch to herself:

Dear Angie,

You are so blessed! Get out there and walk your dogs more because there may come a day you might not be able to.  Enjoy time with your friends, meeting new people and going outside because a day may come that you are barely able to get off the couch and become isolated. Take pride in being able to multitask, even if that only means being able to walk and do something else at the same time. Go for that run because one day you may give anything to be able to do it, so do it!

Don’t take for granted the ability to speak the words you intend to say because one day those words could leave your mind. Talk about and cherish memories because one day they may not exist anymore. Enjoy the sounds of the world around you as one day those very sounds may cause you extreme pain and anxiety.

Don’t ever take for granted driving a car, cooking dinner, swinging a golf club, having a conversation, going to the grocery store, walking, talking, breathing, or sleeping because these things are not a given for everyone. Things come easily for you, and you learn fast. You’re a hard worker, very active, social, and fun. Cherish these qualities as everything can change in a moment and the ‘simple’ things you take for granted today, may be gone tomorrow.

Finally, never lose hope no matter what life throws at you. Make sure to count your blessings every day, even when the world comes crashing down on you. Always count your blessings; because there are so many, and those blessings are what will help you to never lose your strength, hope and happiness. No matter what life takes from you, it can’t take that.

Love, Angie

~

The second letter is from Kimberly Sorin to her grandson Colban Sorin:

Dear Colban,

You came to live with me a confused and sad little boy. Eventually you became vibrant, funny, and always smiling and laughing. Over the years, as you get older, many things will happen that will shape you into the man you’re to become. There may be days when you feel like there’s no reason to smile. There may be lots of tears and anger, moments may be forgotten. These things may come back to you but in a different manner. Don’t lose your sense of self, keep fighting…and know that I will always be right there by your side.

Always, love you to the moon and back,

Grandma

~

The third letter is from IAES member and AE Warrior Ryann Henn to herself:

Dear Ryann,

Things right now are going okay, but there will be answers to questions you had about yourself and the way you have been acting and feeling. You need to know there are so many people out there that care and love you more than you ever will know and expect. Everything will be okay. I know you are scared about the future, but the people that love you are here to guide you. They will never leave your side. You will feel love like you never have before, and it will inspire you to work hard in recovering. Don’t lose touch with yourself and what you are most compassionate about, animals, people, and creativity. And take it easy on yourself, it’s okay to take a nap.

With lots of love, Ryann

~

The fourth letter is from IAES member, IAES Chief-Resilience Officer and AE Warrior Tessa McKenzie to herself:

Self,

First, let me assure you, you’re not crazy.  God is with you and you will feel okay again.

You are the 1 in 100,000 in this “boot camp for the soul” called autoimmune encephalitis. 

Doctors can’t diagnose you right now and loved ones don’t recognize you, but your brain is inflamed and it’s not your fault. 

There is a lot that doesn’t make sense right now.  When your soul is weary, and God is nowhere to be found, know he’s still there and keeps his promises.  When prescribed medications don’t work, know the right ones will eventually provide respite to your exhausted body.

Your life will go on past this experience – the sleepless 60 days, disorientation, panic, visual impairment, tachycardia, and memory loss…

And one day, you won’t view this as much of a curse as a unique gift to pay forward in empathy for those you feel alone, suffer, and are misunderstood. 

Above all, remember, “all things come together for the good of those who love God (Romans 8:28).”

Love,

Me

~

The final letter is from IAES member, AE Warrior and blog editor Jeri Gore to herself:

Dear Jeri,

Wow! Where do I even begin? Sometimes I feel like I want to write you a very long letter and sometimes it is short and sweet. I suppose today it falls somewhere in between.

First of all, Jer, you always like things black and white. You like the lines of life to be clear, precise, and not muddled. Well, Chica, if nothing else, the next few years will show you that this beautiful life you live is anything but black and white and the lines are muddled in a wonderful array of color and emotion. You may think that happenings in your past were tough or trying but, in all actuality, they set you up for what has become the most amazing journey you have taken to date. You will see confusion on the faces of your loved ones, you will feel pain and sadness in their eyes, and you will want with all your heart to take it from them and carry it yourself. You will learn the meaning of love like you have never known it to exist. You will see your life and the lives of others transformed by an illness so new to so many. Above all, Jer, you will know the meaning of the word grateful on many levels. You will be grateful for your past and your present because it has brought you to this place and to these people that have become a family of Warriors like you never knew existed.

Love always, Jeri

 

 

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guidestar platinum logo 300x300 1 e1605914935941 - Letters to Our Before AE Selves, Part II         Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org     International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.  Trivia Playing cards 3 FB 500x419 - Letters to Our Before AE Selves, Part II For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.   AE Warrior Store 300x200 - Letters to Our Before AE Selves, Part II 

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Letters to Our Before AE Selves, Part II

Letters to Our Before AE Selves

February 9, 2022 | AE Awareness Month Special Series

Introduction from the IAES Blog Team:

In celebration of AE Awareness Month, we are pleased to bring you a two-part IAES Blog series of letters written by AE patients (AE Warriors) and caregivers.

The following compilation of letters expresses the thoughts and feeling we would write to our ‘Before Autoimmune Encephalitis’ selves. They express what we would want ourselves to know, or our loved ones or caregivers to know, if we could have been given a foreshadowing of how our lives would be pivoted on its axis due to Autoimmune Encephalitis.

Some letters are from our loved ones to us, and some are from us to ourselves. Long or short, happy or sad, all are heartfelt and are sure to lift your spirits. We hope you thoroughly enjoy Part 1 of this two-part series.

~

 

The first letter is from IAES member & AE Warrior Kerry Jones to himself:

Dear Kerry,

You’re about to begin a journey that you’d rather not take. It will be rough, it will be challenging, and it will change you forever. But count your blessings, you’re going to be one of the lucky ones. Many of your memories will be gone, but that will open the door for new memories. You will reconnect with your estranged son and become a grandfather to his son. And all the bonds of love in your family will be strengthened. But most of all, learn to cherish every moment and take nothing for granted. Love and share your newfound strength with those less fortunate than you.

Love, Kerry

~

 

The second letter is from IAES President and Founder Tabitha Orth to herself:

You Have Entered: The Twilight Zone

It was December 2013, when I was re-arranging my sock drawer, that I came upon a sealed envelope with the words “Read Me. From Me. February 2022” written on it. The envelop appeared to be crisp and new as if it had just been placed there.

This is strange, I thought. That is my handwriting, but I don’t remember writing this. What the heck is going on? I thought, as I lifted it up with a shaky hand. I looked around the room, as if for answers, and felt like I was in the twilight zone. I could even imagine hearing the music from the TV series.  I sat down on the edge of my bed and carefully opened the letter.

Hi. It’s Me.

I know.  This is weird. Don’t freak out. I recognize my own writing. Yes. Take a deep breath.

I don’t have much time. Time, now there’s a story. Bottom line, it’s not linear.

I’ve been given a chance to punch through time to leave this for Me in 2013. Look, I need to tell Me something. I’m sorry I must tell Me this, but I need to know it NOW. It will help. At this point in my life, I think I’ve navigated the hardest challenges that life has offered. I’ve had much bigger long-term life challenges than the average person and I think the hardest part is over.  I’m really sorry. The hardest part is yet to come.

Now, I know hearing this from future Me is shocking, but I’m going to go through a frightfully horrific period in my life. It can’t be stopped. The wheels are already in motion. I’m sorry. Trust this is real and that it is true. You will know it is true in the not-too-distant future.

What I want you to know is that I get through it. It is now 8 years in the future, and I survived. Not only that. I thrived. My eyes are wide open to what is most important in my life. I’ve learned that I can love deeper, give more of myself, appreciate all the little things I took for granted that each day brought. The garden, the seasons, being kind to strangers, going out of my way to do or say something kind. Appreciating life. Enjoying every moment of life. I came through a very difficult and scary time and overcame adversity. Jim and Matthew are thriving and happy. Life is good. It’s better than good. Hold this knowledge in your heart beginning right now.

Now, put this back under the socks. I will find it again several years from today. I would have forgotten about it when I find it again, but I will remember its message when I recognize what it is. I’ll have some memory problems when I find it again, but I’m great. No worries. I’m ok. 

After all these years, I can’t explain this magic. I have continued to be baffled by it. I can only think that miracles happen. Magic is real. Magic is the power of love. Through love anything is possible. That’s all I’ve been able to work out so far. Maybe time will tell more.

~

 

The third letter is from IAES member & AE Warrior Laura Melcher to herself:

Dear Laura,

Life isn’t easy, you work and look after your kids and do it without help from anyone.  Enjoy this life you have now, because after Autoimmune Encephalitis, everything changes. This life is everything you wanted. You and the kids have everything you need. You are fit, healthy and able to provide.

One day you won’t be able to go back to that job you go to every day, and you will miss it SO MUCH.

Everything you took for granted will be hard. How do you pay the bills alone when you are medically unable to work? You can stand for 9 hours a day now, THAT is a blessing when you can’t stand more than 10 minutes. When everything you took for granted is hard, walking, standing, household chores, reading an email, taking a phone call, being a Mum, showering, just existing.

You think life is hard now, NOW you are blessed.

Enjoy it while you can.

Kind regards, Laura

~

The fourth Letter is from IAES member & AE Warrior Celia Fermon to herself:

To my old me,

I want to tell you that sometimes the road in life gets difficult. It can be exhausting. You have learned by now that you have the capacity to go thru all the journeys. You will find that in the worst moments you will always have an angel by your side. Do not be afraid. You will, also, receive a little angel that has four furry paws that will always be watching you and taking care of you. Do not worry for you will learn that in your weakness is your strength.

Love, Celia

~

The Fifth letter is from IAES member and AE Warrior Sharon Bassell to herself:

Dear Sharon,

It’s me! The YOU before AE.

It’s been nearly 7 years since that vile antibody entered your system and gave you AE.

I’ve watched you stumble around in the dark for so many years looking for answers, cures, and hope….and where was l?

I wish, I wish I could have talked to you before it all happened.

I may have been able to save you so many tears, anger, confusion and maybe made acceptance and progress happen sooner!

 

BUT! Better late than never!

I’m here now, and here is what I wished you’d known before.

* NOBODY could have predicted whether you would have ever been cured.

* NOBODY could ever have predicted how much progress you would have made.

You have an aggressive, angry, strong, resilient antibody – I bet nobody told you     

that!

 

* Your life will never be the same again, or even anything resembling it – I bet

nobody told you that!

 

* Remember that career in Nursing, that was the very core of your being?

The role that you were born to do.

The thing that you dedicated 44 years of your life.

Well! It’ll ALL be gone in ONE DAY!

The day you were diagnosed with AE!

 

* You’ll never be able to drive a car again, your clean license of 42 years- another

thing that’ll be gone at a stroke of a pen!

 

You had the right to know that things were going to get a lot worse before they got better….

 

You needed to know about neurofatigue, flooding, visual deficits, memory loss

(Both short- and long-term memory).

Loss of certain “Life Skills “……remember how good you were with all things before IT?

Well, not anymore!

I should have told you about the personality changes, mood swings, impulsivity,

the tears, lack of sleep, multitasking difficulties, and problems with processing.

 

I’m not painting a very pretty picture here I know, but, I believe, knowledge is power!!!

I wish you had even a third of this information before AE got its grip on you!

Your recovery and acceptance would have been so much smoother and quicker.

I know that your medical specialists will focus on many different types of drugs, but they didn’t tell you that you will likely have to reschedule the rest of your life around the administration of these medications, just to keep you from relapsing!

Whilst the right specialist and medication treatment is pivotal, I bet they didn’t tell you that you needed to get into a Brain Injury Rehabilitation Program as soon as possible, did they?

BRAIN INJURY REHABILITATION is what will turn your life around! I wish, I wish I could have told you way back then.

These professionals will focus on YOU as an individual, they’re experts, they’re educators, they’re facilitators, they’re game changers!!!

I also wanted to tell you to link up with a support group like the IAES, you need to make your life easier, and learn from people who’ve “been there “……..

I see you now, and I’m so sorry that your treating doctors didn’t look “outside the box “and suggest adjunct services. Hopefully, this Awareness Project will enlighten many healthcare professionals to have the discussion in the beginning!

I see you know, you’ve done so well, I’m proud of you. You’ve managed without me……but how I wish I could have written this letter to you …. myself “Before AE”

I love you

~

The sixth letter is from IAES member, IAES staff member and mighty AE Warrior Mari Wagner Davis to herself:

Dear Mari,

You don’t know this yet, but you are going to find out in the next 5 years what you are truly made of. There will be times when you want to give up, give in, lay down. There will be times where you will be tested, when you will cry, tell your husband to let you go, but you may already know this, there happens to be a lot of fight and feisty ignorance in you. You will use what you have practiced as a nurse for the last 30 years and complain about every small thing that you find “wrong”. What you will later learn is that a part of it is your brain injury, as well as your anger that this disease has brought and that your injured brain will just not let go of. And no, you are not always wrong, sometimes, they are not practicing up to your standard, you will just have to learn to live with that. What you will also later learn is that life is too short and that there is almost always something to find good in most situations and people. (oh, there may be exceptions) but for the most part you will see the good. You missed seeing that in the past, but you won’t after Autoimmune Encephalitis

You, also, do not yet know that perhaps you learned all those case management skills and ways of finding resources not only to help yourself, but to help others. You will find amazing people at the International Autoimmune Encephalitis Society. You may grieve the loss of your job and for a time a sense of purpose, but they will give you purpose that your life will lack and make the most of your skills. You will end up helping people who need it more than you ever thought someone could need.

You already know this, but you have a great husband, but you will find out what some people never get to learn, that there is a love so deep that someone will take hours of their time to walk you through something that would have taken you 5 minutes in the past. You always knew Geoff was a great man, but you will learn that there is a depth to that strength that you in the past, deep down, you knew was there, but did not see on a day-to-day basis. You will see it now daily. You knew you were glad that day when you first met him, you just did not know how important it would be to you. No, you never would have asked for this disease, who in their right mind would, but you will find that as you improve ( I hate to tell you this but it will take longer than they tell you) you find a strength you did not know you had, a sense of humor that can get you through many things and an ability to learn new ways to do things to help you be more functional. Good God I hope my next letter to myself has more to tell you about how much further you have come. You will just have to wait and see won’t you.

Mari

 

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guidestar platinum logo 300x300 1 e1605914935941 - Letters to Our Before AE Selves         Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org     International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.  Trivia Playing cards 3 FB 500x419 - Letters to Our Before AE Selves For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.   AE Warrior Store 300x200 - Letters to Our Before AE Selves 

Be a part of the solution by supporting IAES with a donation today.

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Guilt and Forgiveness

Guilt and Forgiveness

December 31, 2021 | By Jeri Gore

 

 

By definition, guilt is like shame. Or pride or embarrassment. It has been described as a self-conscious emotion, one that involves reflection on oneself and sometimes on others.

This is a subject that is difficult for AE Warriors, caregivers and medical personnel on so many levels. As 2021 turns into 2022, I believe this is worth taking a look at, talking about, facing head-on — and putting to rest — in a kind and loving way. Turning over a new leaf, so to speak, as we head into a joyous, healthy and prosperous 2022.

We all feel guilt at some time, especially when speaking of and mulling over the challenges we have encountered while dealing with AE. Specifically, our medical staff, our loved ones, caregivers and ourselves. Guilt is natural. And there is not one of us who is exempt from feeling guilt. But there is no shame in this at all. Rather, facing it will hopefully bring comfort and relief.

Let’s start with medical staff and personnel, for whom AE is difficult to diagnose on an easy day, but far more onerous on the typical patient. I am sure every one of us has a story regarding this, and a few (or more) grumblings to go along with that story. Because of the illness itself, we are a complicated group of patients and easy to misdiagnose at times. As we look forward, maybe we can all “move” forward and begin to forgive those that have had a hand in many of these stories.

Next, caregivers and loved ones. This is tough. Both have gone above and beyond on our behalf. We, AE Warriors, all present in different ways. In difficult ways, in funny ways, in scary ways, in tiring ways and everything in between. While there are trends, there is no standard. Many of the AE variations have typical presentations but still they can, and often do differ for each patient.

There are times when our loved ones and caregivers will feel guilt over what was said or done.  They are Warriors, in a sense, just like us. When on the battlefield, decisions and suggestions can be made in the heat of battle that may not be perfect. We all have learned and will learn from these decisions. AE research is helping greatly with this and if we all work together, inroads will be made to make both treatments and results much better as we go forward. As we look to 2022, I suggest we hold our loved ones and caregivers near and tell them, often, how much we appreciate them in every way possible. They should feel no guilt but as much appreciation as we can give. Our loved ones and caregivers are — more often than not — everything to us.

Finally, what about us? AE Warriors are a hugely varied group, coming from every corner of the planet, with different paths, stories and diagnoses. Yet we are one. Not one of us would ever want to put our family, friends or anyone through what they go through. It is that simple. We are beyond appreciative for each one of them and everything they do for us. I could never begin to adequately express to all those involved in my care what I feel for them. No words can do this for me. My appreciation is beyond the words I write. Sometimes I feel guilt about this. And I am sure most AE Warriors feel this as well.

Then there is survivor’s guilt. This is emotional and hard to talk about. I am here. Some very special and loved people are not. Why is this so? Why are some folk’s symptoms and diagnoses more difficult to bear than others? Often, I feel guilty that I may have had any easier AE path and recovery than others, and I believe we have all felt something of this nature. I am grateful for all I have been given. I hope for a future that includes more research for AE so no one ever feels survivor’s guilt.

It’s my sincerest hope for a future that reveals every AE Warrior, caregiver and loved ones will be one in which we collectively move from Warrior and survivor to Warrior and thriver! As we move thru a holiday season that all of us can celebrate from whatever corner and culture we come from, maybe we can give each other a collective virtual hug, smile and look toward a  positive, happier and healthier time. As 2022 begins, so does more research and help for all of us on every level from diagnosis, to treatment options, rehabilitation, ongoing care and recovery. Here’s to a new year and new beginnings!

Warrior and Thriver - Guilt and Forgiveness

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Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - Guilt and Forgiveness

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - Guilt and Forgiveness 

Be a part of the solution by supporting IAES with a donation today.

 

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Introducing: IAES Video Blogs

Introducing: IAES Video Blogs

December 29, 2021 

Introducing the IAES Vlog Series

The International Autoimmune Encephalitis Society, (IAES), is excited to announce the roll out of a new information resource, video blogs (VLOGS). This ongoing video series will be an addition to our popular IAES Blog articles.

To date, the IAES Blog has published articles that include personal stories from AE patients and their caregivers about their AE journey, informative articles regarding specific topics pertinent to AE patients and their families, and a wonderful series of articles from our partnership with PennNeuroKnow (PNK).

PNK articles are written for us by medical and PhD students and their instructors at The University of Pennsylvania. These passionate neuroscience students tackle different medical topics, (i.e., aphasia, cytokine storm, blood brain barrier, seizures in AE, etc.) and present them in layperson’s terms to assist us in becoming well informed and strong self-advocates. Each article also comes with a downloadable print out for your convenient reference and are located on this page of the IAES website: https://autoimmune-encephalitis.org/living-with-autoimmune/ 

It is our sincere hope the VLOG series will enrich your knowledge and help those with AE and those caring for AE patients. We will cover a variety of topics as well as hear AE patients and caregivers tell their stories via video interview. VLOGs will be located on the IAES YouTube channel below once published:

 

An AE Patient, Her Dog, and Destiny 

We hope you enjoy our inaugural video interview with Tabitha Orth, IAES President and Co-founder, as she tells us the sensitive story about her precious German shepherd, Miko, who recently lost her life to cancer. It is not a typical story or one you should miss, as it starts with Tabitha’s experience in psychosis that led her to later ask her husband, Jim, if she could get a German shepherd puppy. 

We are looking forward to being able to include many AE Warrior stories in the VLOG series. AE Warriors who are not recovered enough to write their story, but who are well enough to tell their story will raise their voices.  We also intend to bring you informative videos that will help you better understand issues you may encounter on your AE journey. Let’s raise additional awareness of Autoimmune Encephalitis in this ‘fireside chat’ venue and help empower the many thousands of AE Warriors around the world.

Enjoy the show!

Lights-Camera-Action

If you would like to sit down and tell your story to IAES via video interview, contact Jeri Gore, Editor-In-Chief, Blog Division at jeri.gore@autoimmune-encephalitis.org

 

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Your generous Donations allow IAES to continue our important work and save lives! 

 

guidestar platinum logo 300x300 1 e1605914935941 - Introducing: IAES Video Blogs

 

 

 

 

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - Introducing: IAES Video Blogs

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - Introducing: IAES Video Blogs 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

 

Rehabilitation Strategies

Rehabilitation Strategies

December 8, 2021 | By Mari Wagner Davis, RN ACM

The staff at IAES is proud to present an informational blog written by our wonderful Support Services Coordinator, Mari Wagner Davis. Mari is instrumental in helping AE Warriors, their families and caregivers receive the information and services necessary to optimize their diagnosis, care, and recovery. She is a mighty warrior herself and developed strategies that have not only greatly helped her but have also aided hundreds of others on their AE path forward. We hope you find the information and story to follow, helpful!

—————–

My name is Mari Davis, and I am the Support Services Coordinator with the International Autoimmune Encephalitis Society. I was diagnosed with limbic encephalitis almost 5 years ago after having seizures at work. After being diagnosed with AE, I received plasmapheresis, IVIG and steroids. Due to ongoing seizure issues, I remain on seizure medications, and I continue to have memory issues.

After my initial diagnosis and treatment, I had a brief inpatient rehabilitation stay and then was able to move back to our home and transition to a day rehabilitation program. I was, also, able to complete a cognitive rehabilitation computer program. As time went on, it became apparent to me that there was little known about what rehabilitation services may be best for AE patients like me and those with other forms of AE. We all differ greatly in our AE recovery and rehabilitation but many of us have similar issues. I began to question and investigate what services could help to provide the best possible outcomes and help those with AE reach their maximum potential over time.  For example, I have noticed that I have improved greatly in some areas and not so much in other areas.   I have memory issues and have issues with divided attention. I find it difficult to multi-task. Although inpatient and outpatient rehabilitation services ended, I have continued to work on making progress in the areas that I struggle with. With my background and work as a nurse case manager coupled with my own diagnosis of AE, I have been on a quest to find ways to better outcomes not only for myself but all those with AE. Although inpatient and outpatient rehab is wonderful, for me, it has not been AE specific enough.

Many of the areas that I have made the greatest amount of progress on are by developing methods and strategies that I have come up with myself and with the help of others and may be beneficial for those with AE. Realizing and accepting that I have a memory issue has made me become more organized. I have had to develop adaptive strategies for myself. Many of these ideas were not taught during rehab. In the following paragraphs, I will outline strategies that have greatly helped me.

When I plan meals and go food shopping, I save and write my grocery list and organize it by meal versus simply making a list of random items needed at home.  Before I started doing this, I would forget what I had planned on making and because of this I became confused and frustrated.  When I plan to make a meal, I will leave something out on the counter to remind myself of what I planned to make. It is a visual reminder of the meal I plan for that day. Another visual reminder strategy I use is to leave the light on that goes to the laundry area in our home. This visual cue helps me to remember that ‘light on’ means laundry being done. I then remember to go and check on the laundry’s progress. Another visual reminder cue I find useful is to leave my medication bottles on the counter and use a pill organizer. This makes it easier and ensures that I take my medications and keep track of when a med refill is needed. I feel what is out of sight is out of mind. Visual cues have been a very big help for me in overcoming memory issues.

Another way this strategy has been useful is to keep a calendar on my refrigerator. I note events on the calendar and keep this same event calendar on my cell phone. I then utilize the various alarm features and different sounds on my phone for specific events. Having the calendar on the fridge is a visual reminder for me but also lets my husband know what I have planned for certain days. One small thing I do is to call him when I leave the house and call him when I arrive where I am going. This gives him a sense of comfort knowing that I remembered the planned event, have arrived on time, and once home, have gotten there safely. I, also, use phone alarms for my medications. I find this especially useful in the evenings when I may have other activities going on or am tired.  My phone can be useful for directions, typing notes regarding things that I want to accomplish both routine and nonroutine. List making has become paramount for me. For many without AE remembering what needs to be done daily, weekly, and monthly may be easy. For me making a list either on paper or on my phone and then checking off the items once they are done has been a great strategy.  For many of us it can be easy to become frustrated or depressed when we acknowledge or need to deal with memory issues. It can be exhausting. Making lists and checking items off not only assures that things get done but it also gives us a sense of accomplishment and we can then see progress being made. For me, I feel more positive and successful in my rehabilitation.  

When I was discharged from rehab to home, I had no schedule. I slept quite a bit, which is necessary for our recuperation and recovery. And many of us still need to sleep, nap and rest more than we previously did. But I was left with no structure or schedule. I had previously been very busy with work, family, and friends. I felt at a loss.  I no longer had the daily structure I had loved and thrived on before. Trying to develop a new routine can be helpful. It provides structure and can help an individual by giving purpose. For those wanting to and able to return to work this provides a good transition strategy between recovery and returning to work. Simply giving yourself a daily timetable of things to get accomplished can be a mental boost. Of course, at times we need to recognize and pay attention to our brains and bodies and know the daily routines may need to change due to treatments, etc.

Another issue I have realized is that after acquired brain injury, rest is important. It is as important as working on the issues or deficits that remain difficult for us. Most of us need additional rest. At the end of a day, I will find that if I lay down on the couch watching TV, I will fall asleep. If I get up early, I may need a nap during the day. I may need breaks if I am working on something that is cognitively challenging. Giving myself the time to rest, will allow me to be more successful in the things that I am working on.

Exercise can also help in recovery. But it needs to be added to one’s schedule carefully and as tolerated. Exercise can be scheduled into the day at a time that will work with other planned activities. It may take time to come up with a daily routine and individuals with acquired brain injury may need help in initially making a schedule. But developing daily routines for those of us with AE can help our recovery both mentally and physically.

Many of us diagnosed with AE are not able to drive a car or any vehicle for many reasons but the main one being we have had seizures. In many countries we must prove we are seizure free for a certain period of time before our driver’s license can be reinstated or we may need to take a special type of drivers test or class to be able to drive. In my case, I took a special driver’s test with the DMV (Department of Motor Vehicles). The instructor was trained to work with individuals with disabilities and taught me a lot about safe driving. Although I did not pass the driving test the first time, I did the second time, by utilizing what he taught me. I am probably a safer driver now than I was before AE. One of the things the instructor taught me included waiting a bit once the light turns green in case someone is running the red light. This simple act would allow me to avoid getting hit by a car going through the light. I now leave more space between my car and the car in front of me. If there is a reason the car in front of me stops or is stuck in traffic, leaving additional space allows me a way to move into the next lane. I am cautious about my speed and leave additional time to get to where I am going. Prior to AE I used landmarks such as buildings to help when going someplace. Due to my memory issues and the fact that places change, landmarks are moved, etc., I now utilize my phone’s navigation apps versus trying to remember directions. And I check directions prior to leaving home so I am more confident in how to get to a location. Being able to drive once again and utilizing different direction strategies has allowed me some independence and given me confidence in what I can accomplish.

Having a new disability can be difficult to accept. I am not the same person I was before AE. I have seen a psychologist since I was discharged home. I have struggled with grieving the loss of the old me and accepting who I am today. With time and work I can say I have made progress; I now have much more appreciation for other people, I am not in such a hurry that I do not see what may be going on with others around me. I realize that some of my relationships where those of convenience, and I know how much it can mean to people to take a small amount of time to acknowledge them and spend some time with them. I can say that working with a professional around the issues of grief and adaptation can be helpful. I will say recovery after autoimmune encephalitis is a marathon not a sprint. Additional research about the stages of recovery after a diagnosis of autoimmune encephalitis is needed to help provide the services that can help both the individual and the family.

Utilizing some of the strategies I came up with has helped ensure progress in my recovery. It has helped boost my moral. Developing visual cues, trying to schedule my day, exercising when I can, getting adequate rest, learning new driving strategies, and seeing a psychologist have been extremely useful in allowing me to become the new me! 

rehab strat - Rehabilitation Strategies

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Your generous Donations allow IAES to continue our important work and save lives! 

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Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - Rehabilitation Strategies

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - Rehabilitation Strategies 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

 

The Episode

The Episode

November 25, 2021 | By Diane Wong

On this day of Thanksgiving in the US and in honor of Caregiver Awareness month, the staff at IAES wish all of you a blessed and thankful day!

We are honored to share with you a poem written by a very special caregiver of one of our members. The poem is written by Diane Wong, the mother of AE warrior Alanna Wong. This poem highlights the depth of love and despair caregivers feel on our behalf… Alanna’s AE went undiagnosed for many years until 2021.

She wishes to connect with others travelling this same path and shares her journey on Instagram @alanna_wong and on Facebook  @AlannaWongLife1

—————–

The Episode

 

Today my daughter lost her soul.

There is no emotion.

There is no understanding.

There is only sham rage.

A rage she does not control but

that controls her.

It is directed at me only because

I care for her.

If she were alone, it would be directed

at thin air.

I love her with my entire being.

 

Today my daughter sleeps.

The sleep is not restful.

The dream is a nightmare.

It lasts for days, or weeks, or months.

Life for her is lonely.

Life for her is cruel.

She is a prisoner in her own mind.

Can you imagine the torture she must endure?

I love her with my entire being.

Today my daughter is swollen.

Her face and eyes are puffy.

Her pupils are dilated.

Her sclera is yellow.

Her tongue is thickened.

Her body is bloated.

Her color is gray.

Her heart palpitates.

She cannot care for herself.

She is vacant.

She is distant.

She is unsure.

She wonders, “Am I dead or am I alive?”

“Is this real, or am I dreaming?”

Her short-term memory is destroyed.

Her relationships are destroyed.

Her life is destroyed.

I love her with my entire being.

Today my daughter asks, “Why was I put on this earth?”

She says, “I can’t do this anymore.”

“I don’t want to live.”

“I want to die.”

“I want peace.”

“I want to be in heaven with God.”

Tears roll down my face too!

I can’t answer her questions.

But I continue to give hope.

“It will get better,” I say

“It will go away one day.”

“You will live the life you desire and deserve.”

I love her with my entire being.

 

Today my daughter went for help.

The hospital staff makes assumptions.

How can the medical field not understand an organic illness in the

Brain is no different than an organic illness in the heart, or the

pancreas, or the lungs?

They ask, “Why are you here?”

“There is nothing we can do for you.”

Then they call social workers in.

If we’re lucky, my daughter won’t be committed.

I can care for her better than any psych ward.

What a shame!

I wonder why they’re even in the

business of helping people.

I go home to care for my daughter alone.

Isolated from the world.

I love her with my entire being.

Today my daughter begins life again.

Her soul returns.

She is young, maybe 3, maybe 5, maybe 10.

She’s cute and sweet.

She’s funny and mischievous.

She’s loving.

Her emotions return.

She can care for herself again.

She can read again.

She listens to music.

She is waking up from this long, awful nightmare.

I love her with my entire being.

Today I hear the words, “Mom, I’m awake.”

My sleeping beauty returns.

The words are bittersweet.

Sweet because we know she’s back with us again.

Sweet because she can live again.

Sweet because she can function again.

Bitter because she’s lost her memory.

Bitter because she lost more time.

Bitter because she lost herself.

Some memories come back in flashback form.

Which itself is torture.

In healing comes pain.

But we’ve already been through so much pain.

When will it end?

Maybe this will be the last one.

I love her with my entire being.

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Your generous Donations allow IAES to continue our important work and save lives! 

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Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

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For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

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Be a part of the solution by supporting IAES with a donation today.

 

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A Letter to Mom

A Letter to Mom

September 29, 2021 | By Jeri Gore

The staff at IAES is proud to share with you a letter by none other than our Blog Division Head, Jeri Gore! Her compassionate, strong, and thoughtful spirit shines through these words addressed to her mom in this heartfelt and insightful piece. We learn not only of AE’s far-reaching impacts on families, but of the joy and opportunity that can await AE Warriors after surviving the worst parts of the illness.

We hope you enjoy this opportunity to learn more about Jeri’s LGI1 story and what drives her to be such a hard-working, dedicated member of IAES! 

—————–

“If we accept the science of the law of Conservation of Energy, “Energy cannot be created or destroyed, it can only be changed from one form to another.” ― Einstein

In other words, the total amount of energy in the universe never changes, although it may change from one form to another. Energy never disappears, but it does change form. It isn’t a far leap in realizing that love, the most powerful form of energy, is eternal.

~~

Dear Mom,

It has been a while since I have written you a letter. I apologize. There is a lot to tell you and talk about. I suppose the emotion of it all made it tough for me. Still, no excuse, you are my Mom and I love and miss you dearly and always will.

I know you probably know ALL about what is going in our lives but, boy oh boy, do we need to have a chat! The grandkids are doing great, and all are busy. Another is going to be getting married, one went off to college and your eldest grandson and his wife are going to have a baby boy this coming November. Just think of it, you would be a great grandmother. I know, you are so excited about this! Bro and I are doing fine as are Mitch and Marina. Keeping track of the kids and their lives is fun and exciting. They would have you laughing as they always did.

We made it up to the cottage in Canada this summer after the long 18 months or so of Covid restrictions and we could not be happier being here in the place that you loved best next to sunny south Florida.

I was standing near the stone we placed in your honor, in front of the cottage facing the lake and I figured it was high time I told you all about me. To talk about the disease, I have. To tell you about the organization I try and do my best to be a part of, and to help to try to ensure that there will come a day when no one needs to write to their Mom about this disease. To help ensure Autoimmune Encephalitis is a term, a disease, that is known about and easily diagnosed and treated.  

Mom, I have Autoimmune Encephalitis anti-LGI1. Big word I know. Strange as heck disease for sure. In 2018 and more into 2019 I started having odd symptoms. My brain felt foggy. Sometimes I would be looking at someone and just have a blank look in my eyes. Sometimes I was mean. At times I would repeat things. Sometimes I walked kind of funny and made weird noises. It was like I had dementia. I then had seizures. Lots of seizures. It was super scary for everyone around me. I was in the hospital a lot and I was finally taken to a great hospital in Philadelphia near where we live. A wonderful neurologist at that hospital knew all about Autoimmune Encephalitis and has taken good care of me. I am doing well now. I try and participate in as many clinical trials as I can to help further research and find out more about AE. I joined an organization called IAES or the International Autoimmune Encephalitis Society to help, in my small way, to get the word out about AE. No one needs to go thru what so many with AE do. No families and friends need to go thru what your grandchildren, Mitch, Bro, Marina and all of our friends did before I was diagnosed. I know, I know you would tell me NOT to pack 25lbs in a 5lb. bag. You said that to me all the time. But, Mom, for this, for AE, I must. There has been some research that leads scientists to believe that for some folks there may be a genetic link to the type of AE I have. I have to do everything I can to ensure others get this info and to get this information for your grandchildren and generations to come. I must do this for you.

Mom, you passed away ten years ago. We were told and we believed you had dementia. You were 81 years old. You started showing symptoms of neurological issues 5/6 years prior to when you died (right around the time of this last family picture taken in 2007). You were relatively young, and those symptoms came out of the blue. I know hindsight is always 20/20 but I cannot say, in my heart, that you did not have some form of AE. 

You simply started showing signs of dementia-like behavior. This is one of the things many with AE have and show. We will never know.

We will miss you always. And I will do my damnedest to make sure no one ever needs to write a letter like this to their Mom in the future.

Mom, thanks for the chat. I promise not to wait this long to write and talk again. I hope you are doing great. I hope you are smiling down at us and have that twinkle in your eye. I would give anything to see it in person and to hold your hand. I’ll be sure to write about the upcoming baby and wedding and all the goings on with a young college kid. You would be laughing like crazy with everything that goes on with the other grands as well.

By the way, your cottage is as amazing as always.

And I hope you understand why I do what I do.

As always, love you forever and a day…

~Gig

Jeri gore - A Letter to Mom

Click here or the image below to subscribe to our mailing list :

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Your generous Donations allow IAES to continue our important work and save lives! 

guidestar platinum logo 300x300 1 e1605914935941 - A Letter to Mom

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - A Letter to Mom

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - A Letter to Mom 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

 

Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.


International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

CONTACT US


352-527-2470

IAES@AUTOIMMUNE-ENCEPHALITIS.ORG

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