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ae wARRIOR pERSONAL sTORIESAND TOPICS OF INTEREST
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.
PANS and PANDAS: What are they and how do they relate to autoimmune encephalitis?
Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) is an autoimmune condition that occurs in children as young as three years old1. It is difficult to know how common PANS is due to the difficulty in diagnosing this relatively newly-recognized disease. PANS results in a very rapid (seemingly overnight) development of obsessive-compulsive behaviors in previously healthy children.
Autoimmune Encephalitis and Eating Disorders
Eating disorders impact the lives of millions of people around the world, with negative effects on the physical and mental health of people with these disorders as well as their families and friends. In 2018, the estimated prevalence of eating disorders in the United States was 4.6%. Caretakers of relatives with eating disorders also report impaired mental health with feelings of anxiety, powerlessness, sadness, and desperation.
Memory Strategies: Helping You Remember
This handout explains the 4 types of memory. It also gives strategies to help you remember things if your memory is impaired.
Daring Daisy Part 4
Being in and out of various hospitals has become second nature to me. The hospitals and staff are like my second home and family in many ways. Between getting weekly infusions and having issues with high and low blood glucose levels due to AE has me in various hospitals all the time. I had surgery last year to put an arteriovenous (AV) fistula in my arm. The surgery and recovery process were difficult.
A Detailed Look Inside The Human Brain
We all appreciate the complexity of the human brain. While our hearts, lungs, and livers are very similar to those of other mammals, our brains are what distinguish us from our primate ancestors. Humans learn, communicate, adapt, and connect with each other like no other species on Earth. But until recently, the true complexity of the human brain was still a mystery. Scientists often use animal models to study the brain because of how difficult it is to gain access to human brains both technically and ethically.
Learning to Bloom Where You’re Planted | Conclusion to the WhereAreMyPillows Resilience Report Series
Two years ago last month, I was hospitalized for the first time. I was diagnosed with seronegative autoimmune encephalitis (AE). And I started 5 months of immunotherapy, roughly 5 years after my illness first began.
By November 2019, I thought the war was won: I seemingly had all the answers to solve my medical mystery, which had been open since 2014.
We Shall Overcome
It was July 4, 2013
I sat in a plastic chair with my arms wrapped around my knees curled up with my toes pointed to the floor. Non-responsive. Catatonic. I was not aware of the date, as I sat unmoving holding that position from 6am on July 4th until 1 a.m. on July 5th.
Who’s Who in the World of Physicians?
The staff at IAES is proud to present a different type of blog. During the course our AE journeys each of us has had the pleasure of being treated by and interacting with what seems like an overwhelming diversity of doctors, specialists, nurses, and therapists. We have all had challenges keeping them straight. At times we have all had problems with knowing who to ask what, how to ask and where to go for assistance. AE is overwhelming enough and keeping all the medical personnel straight can sometimes make it even more challenging.
Creativity in the Brain
Creativity can often feel spontaneous and out of our control. It can hit us all at once, seemingly coming out of nowhere. Then there’s writer’s block. The struggling, uninspired artist. The elusive solution. Scientists have long been trying to understand creativity by uncovering its biological basis. What is happening in the brain when we have that lightbulb moment? To tackle that question, we first have to ask: what needs to happen in the brain to switch on the light?
Father’s Day 2021
IAES would like to celebrate the fathers and men in our lives. Every year in June we have a day that celebrates Fathers. It is our belief that we celebrate these men every day. These are the men that have helped us become who we are. These are the men who have shown us support, told us stories with a sparkle in their eye, laughed and cried with us, and danced the dance of life with us! It is our sincere hope you enjoy the two stories below that highlight the role of the magnificent men in our lives….Happy Father’s Day!
Raising Awareness of AE During the Recovery Period
It’s been about five months since my last blog entry. Medical progress has been slow. But….positive progress on many fronts has been made! I submitted a press release regarding AE and my first blog and the story has received national press coverage here in Australia! I’ve been stable on my current medications and I refuse to back off or wean off the meds for fear of returning symptoms.
Brain Beats
Have you ever put on music to help you study? Or to calm you down after a stressful day? Maybe you’re scrolling on Youtube right now trying to figure out what to listen to next…Well, have you ever considered listening to binaural beats?
This is what it took to lift me out of an autoimmune encephalitis relapse
The plane lifts. Like many traveling for the first time since the pandemic began, anxious feelings churn beneath my calm exterior.
Is it safe to fly? Will I regret this later?
At the very least, the destination promises to deliver on novelty, excitement, and energy—qualities that had been missing from much of the past year. As we reach cruising altitude, my nerves are gradually dampened by daydreams of stepping inside iconic landmarks, taking in a show, and sating my photographer heart with vistas of an expansive skyline. Soon, my imagination is running wild with all the things to experience as a first-time visitor to the City That Never Sleeps.
Honoring Mothers in the Autoimmune Encephalitis Community
How this piece by Erma Bombeck came to me will always be fresh in my memory. There was a synchronicity to it that touched my heart. Our son Matthew is now 30 years old. When he was four, I was fortunate enough to be accepted into a very elite advocacy training program for people with disabilities called Partner in Policymaking. Raising a child with autism is hard. Attending a yearlong program that met for a 3-day weekend each month was challenging for Jim and me as Matthew required 24/7 care and without back-up, that meant Jim would only get a few hours of sleep a night during those periods.
Accidental Lessons from a Sleep-Deprived Life Coach
I am an Autoimmune Encephalitis (AE) survivor. I’m also a life coach.
Meaning matters and it’s taken me years to ascribe my AE journey any meaning beyond “Why me!?” My story may be just like yours or infinitely different, but one thing I’m sure of is that you’re not nuts.
This is not game over. You will feel okay again and I look forward to one day reading your resilience story.
Depression in Autoimmune Encephalitis
Major depressive disorder, commonly called depression, is a disorder that affects more than 168 million people worldwide1,2. Symptoms include depressed mood, lack of energy, loss of interest/pleasure, sleep disturbances, significant weight changes, and thoughts of suicide3. While depression can occur on its own, which is known as primary depression, it can also be caused by other diseases or medical conditions. This form of depression, called secondary depression, is relatively common in patients diagnosed with chronic illnesses, and is one of the key factors resulting in an impaired quality of life experienced by patients with chronic diseases.
Aunt AE, Three Countries, and a Superhero Family
It’s been a rough 10 days. That family member with the huge personality that everyone tries to avoid, moved in again…the one that takes over your household, no matter how hard you try to keep control. The one that makes everyone run around like crazy, makes everything spin out of control and for which you can do everything to the best of your knowledge and capability, but it just isn’t good enough!
Daisy’s Ongoing Journey
I sit here and think about how to begin and write the third part or story or chapter in my AE journey. It is difficult because many days I am confused, tired and lose focus.
I have AE GAD65 Stiff Person Syndrome. My ongoing symptoms include many things one of which is the inability, at times, to be able to focus.
Amy’s Resilience
My AE journey began quite unexpectedly in 2015! I was attempting to see a doctor for a consultation for spine issues at the Cleveland Clinic. All scans, x-rays, MRIs etc. were sent there for the consult from Ohio State’s Wexner Medical Center.
Cytokine Storm: A Detrimental Overreaction
When it comes to responses by the body, the immune response is usually a good thing. Your body recognizes an invading pathogen that does not belong there: bacteria, a virus, and other substances. In response to these pathogens, the immune system must react in a regulated manner and then shut off when it has solved the problem. But sometimes this goes awry, creating an overactive reaction that does not turn off and can end up harming the body it is trying to protect.
AE Warrior Dominic Interviews Dr. Rob Perna
As the 4th and final of the IAES blog series for AE Awareness month 2021 we are honored to present and hope you enjoy the compelling story of the AE journey, thus far, of one of our AE Warrior members, Dominic McDonald and his guide dog Captain! This includes an interview Dominic had with one of his doctors regarding his thoughts about AE and rehabilitation.
My Magical Demon of a Brain
On the first day of April 2020 my life was to change forever. I just didn’t realize the depth of which I would fall into this dark world.
I woke in the morning of the first of April to vertigo, something, I had never experienced before, but knew all too well through my nursing training that something was amiss.
I cried last night
I cried with relief and joy over having learned from my Doctor that the testing for the antiLGI1 autoimmune encephalitis antibodies which attacked my brain a little over two years ago were no longer present in my bloodstream or spinal fluid. Sure, I am likely to have residual difficulties with cognitive function and memory, but I at least feel I’m finally on the road to recovery. I cried because I know I’m one of the lucky ones.
Fire and Rain
“Princesses, they’re just like us.”
My friend Christina once commented that on Facebook, under a picture of Princess Kate. You know, the most beautiful woman in the world. The one whose three children always look clean and like angels. The one who stepped out of the hospital in a slim fitting dress and heels the day after giving birth to her first child. I remember slowly walking out of the hospital in sweats, days after I had my first born, wondering if I’d ever be able to sit down again. Yeah, princesses, they’re just like us.
Loss, Awareness, Help, and Gratitude
I recently lost a beloved parent to anti-NMDA encephalitis. It is still hard to talk about it as my sister and I went through many challenges to get her diagnosed. I understand the pain and difficulties that many of you go through with this disease and having physicians or other health care professionals who are unfamiliar with this disease and its treatments.
AE Awareness Month 2021~The Herd Special Edition
Autoimmune Encephalitis Awareness Month February 2021. Learn all the activities planned for this year’s awareness month and how you can get involved. Raise awareness for AE to help us save lives.
Against All Odds | Contre vents et marées
My name is Catherine Cloutier, and I’m currently 28 years old. My journey with anti-NMDAr autoimmune encephalitis started in April 2015, at the age of 23.
I had previously completed a human nutrition degree at Université de Montréal and I am still practicing as a Registered Dietitian in Québec, and I am a member of my professional order (Ordre professionnel des diététistes du Québec).
The Neurological Exam
Diagnosing a problem in the brain can be a major challenge. Unlike a broken bone,
many neurological problems are extremely hard to see. A computer tomography (CT) scan of
the brain, which is similar to an x-ray, can usually only detect obvious damage, such as bleeding in the brain.
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