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ae wARRIOR pERSONAL sTORIESAND TOPICS OF INTEREST
Continuing My Way Up The Slippery Slope: A Poem
Good, bad, up, down, round and round.
I feel as though I’m on a merry-go-round.
Full of uncertainty if it will ever stop spinning; Full of frustration as I remain on my couch sitting.
Movement disorders as a window into the diversity of autoimmune encephalitis
Whether it’s walking to the grocery store or hugging a friend, movement is a central part of how we interact with the world. We don’t usually think about how we’re able to move, but every motion is part of a beautifully efficient process that coordinates a complicated network of cells across the nervous system.
Cognition in autoimmune encephalitis
Autoimmune Encephalitis is a rare disease that affects different regions of the brain. Patients with this condition can have a variety of cognitive symptoms (for example, memory deficits, slow speed of information processing, attention lapses, word finding difficulties, trouble with following complex commands, difficulties in judgement, difficulties in comprehension of complex tasks, difficulties in forming new memories, and difficulties in understanding tasks or situations)
My Journey to Raising Awareness for Anti-NMDAr Autoimmune Encephalitis
My name is Reyna and I am 29 years old. I have been married for 5 years (together for 11), I have worked as a 911 dispatcher for the past 7 years, and I am a dog mom to a fun rescue pup. I love to read, hike, exercise, travel, cook, and learn new things.
Points of Light Award: A beacon of light, love and hope for all of us!
Our very own International Autoimmune Encephalitis Society President and founder, Tabitha Orth, has been honored with the Points of Light award! Tabitha & IAES would like to thank Points of Light for this honor. It is our fondest hope that all those suffering from Autoimmune Encephalitis, their caregivers, families, and friends have a less traumatic AE journey through the services IAES provides.
Using Electroencephalogram for quicker diagnosis and prediction of the likely course for patients with Autoimmune Encephalitis
Autoimmune encephalitis (AE) is a brain inflammation disorder caused by antibodies. A person’s immune system mistakenly targets different proteins in their brain causing damage and inflammation. This can result in different neurological symptoms including seizures (sudden, uncontrolled electrical disturbances in the brain) and memory problems.
Independence Day!
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.
A Happy Ending for Surprise Diagnosis for One Doctor by Another Doctor from a Land Far Far Away
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.
Jackie Stebbins’ Book Release – Unwillable
Autoimmune Encephalitis Warrior and now author, 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!
Psychosis or Something More? A Family’s Search for Answers
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.
An overview of N-methyl D-aspartate receptor (NMDAR) antibody-associated encephalitis
N-methyl D-aspartate receptor (NMDAR) antibody-associated encephalitis, or anti-NMDAR encephalitis is a type of autoimmune encephalitis. Autoimmune encephalitis occurs when parts of the body’s immune system inappropriately attack certain components of nerve cells in the brain.
The Darkness of a Brain on Fire
Numbers, 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…
What happens when your autoimmune encephalitis treatments aren’t working?
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)…
Through the Eyes of Mom
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.
Falling through the looking glass…
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.
Letters to Our Before AE Selves, Part II
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.
Letters to Our Before AE Selves
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.
Blood, Sweat, and Clusterin
If we can figure out how things like youth and exercise improve memory, perhaps we can use those same pathways to develop treatments for dementia and related disorders.
Genetic Predisposition for Autoimmune Encephalitis
It turns out that some types of AE, like limbic encephalitis, are more closely tied to genetic risk factors than others7. The main genetic factor that has been associated with limbic encephalitis is called human leukocyte antigen (HLA).
Guilt and Forgiveness
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 2020 turns into 2021, 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 2021.
Introducing: IAES Video Blogs
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.
My letter to Santa ATTENTION: YULETIDE BUREAU WISH DEPARTMENT
Dear Santa,
As you know, I have given great thought to my Christmas wish this year. I hope I have made your ‘NICE LIST”, as my wish is in the form of a favor.
Why getting better at baseball might require just a little sleep
Not every experience you have or fact that you encounter turns into a long-lasting memory. Many of these moments slip away, while others become stable, long-lasting memories in your brain. This process of stabilization, called memory consolidation, is influenced by many aspects that impact learning. One such factor is sleep, which is critical for the consolidation of a memory.
Rehabilitation Strategies
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.
The Episode
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.
5 Ways to Answer “How Can I Help”
Caregivers still need help. Caregivers still want help. But caregivers get a little triggered by kind offers from well-meaning people—and here’s the main reason why.
Because it feels like more work.
Caregiver’s guide to self care & avoiding caregiver burnout
A caregiver is anyone who assumes a significant level of responsibility for another person. This could be a family member, friend, or home healthcare worker. Caregivers demonstrate selflessness, commitment, and duty every day. But they also take on emotional and physical burdens that can become overwhelming.
Ataxia and Autoimmune Encephalitis
Imagine you are at a playground with your friends playing hopscotch. It is your turn. You jump with both feet, hop on one foot, hop on the other, all just to get to the end. This type of motor control and balance is controlled by a particular brain structure called the cerebellum.
Halloween Ideas
Every parent or caring adult knows all kids have gone through enough during the past few years. They deserve to have a fun and memorable Halloween celebration, keeping in mind the Covid-19 rules and mandates still in place in many states and countries.
Trick-or-treating was certainly different last year and may be this year as well.
A Letter to Mom
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.
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