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Behind the Scenes

Behind the Scenes

Some of you may be aware that IAES is completely powered by a volunteer staff. Volunteers are either caregivers or patients who have walked this walk and come out on the other side. After experiencing the trauma, they harbored a strong desire to create change so no one else would have to go through the experience without the help and support they so desperately needed. Some volunteer “AE Warriors” (a term I came up with in 2014 to denote the difference between an encephalitis ‘survivor’ versus an AE patient who has a long ongoing battle), are still receiving treatment themselves

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Critical thinking: How networks in the brain may be optimally organized

Sleep is critical. Each one of us with AE has experienced fatigue at one time or another during our AE journeys. We, also, know how important it is to pay attention to the fatigue and do our best to get adequate rest for optimum recovery. Sleep is crucial for our brains. Joseph has explained another reason or in another way just how critical sleep is for us to be able to operate on a day-to-day basis to our best ability

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A Mother’s Heartbreak

A diagnosis of Autoimmune Encephalitis can be devastating and overwhelming. It is difficult for patients, family members, caregivers, and medical teams. Watching a loved one suffer can be excrutiating. Being a parent of a suffering child is a level of mental pain that no one ever wishes to encounter. We share with you a beautiful poem written by Laura Zendejas that speaks to the heartbreak a loving Mother feels for her sick child.

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Memory and Autoimmune Encephalitis

Our brains are what make us human – consciousness, emotion, and memory all come from a tapestry of over 100 trillion connections. When this intricate network is bombarded by misguided immune cells, as in the case of autoimmune encephalitis, the brain can no longer carry out some of its most important functions. One such function that is often prominently affected is memory

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The Island of Misfit Toys

Our son, Matthew is watching Rudolph the Red Nose Reindeer tonight. It triggered the memory of a wise, insightful observation he had given me several years ago when I was recovering from a brain injury caused by autoimmune encephalitis.

My executive functions had taken a long vacay. They were MIA. I rarely did something right. My memory took the hardest hit, especially my short-term memory. I needed a lot of help. That said, I was still “ME”. I was just – making a lot of mistakes. Matthew put his arm around me and tucked me into his side.

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The Calendar

Each year since I have had the honor of having this job as Editor-in-Chief for IAES we have created a calendar. This calendar can be used and shared by all administrators at IAES to note important information that may be coming due. We use it to note events such as seminar schedules, publication dates, anniversary dates of import, dates to have jobs and other projects completed, and anything any of us need to remember and/or have all of us keep in mind regarding what is coming up.

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The 12 Daze of Christmas

Happy Holidays from the entire staff at IAES!
To all our members all over the world and in whatever manner you celebrate we send our love, we wish you happiness and good health in the coming year!

We hope you enjoy this song and video as much as I do!

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What is the connection between cancer and autoimmune encephalitis?

The causes and risk factors for autoimmune encephalitis (AE) are as varied as its many symptoms and subtypes. Determining the cause of a case of AE is challenging because there are often several factors to consider. In most cases, doctors do not know the cause of AE, but in an increasing number of cases they do.

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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.

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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.

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Can viral infections trigger autoimmune encephalitis?

The causes and risk factors for autoimmune encephalitis (AE) are as varied as its many symptoms and subtypes. Determining the cause of a case of AE is challenging because there are often several factors to consider. In most cases, doctors do not know the cause of AE, but in an increasing number of cases they do.

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Creating Your Personal Health Record (PHR) Notebook

Think of a care notebook as a 1-stop shop containing everything that family, doctors, therapists, and care team would need to know about your care. A notebook is simple and easy to carry. Physicians and health care providers keep medical records to better understand a patient’s prior care and to help inform their decision for treatment plans.

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The Long Road to Somewhere …. Wherever That is

Have you ever noticed how many people, when they are encouraging you, will say, ‘Oh, don’t worry you’ll get there’ but what if you no longer remember where ‘there’ is?

When my youngest daughter Hannah was born, she was 6 weeks premature. On Christmas day of 1983, the paediatrician called and said, ‘If she doesn’t fight, we will lose her, it’s now up to her’!

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Neuro MythBusters: The truth behind 10 common myths about your brain

Many people find neuroscience fascinating because learning about our brains teaches us about ourselves. Unfortunately, popular interest in brain research has led to several pervasive myths that misrepresent how our brains work. Combatting these neuromyths is difficult because the truth is often much more complicated than the myth and buried in intimidating scientific literature.

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10 Big Unanswered Questions in Neuroscience Part 1

This past year, astrophysicists used NASA’s James Webb Space telescope to observe a star that is over 33 billion light years away from earth. Back on earth, particle physicists used the Large Hadron Collider in Switzerland to confirm the existence of incomprehensibly tiny subatomic particles.

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A link between COVID-19 and autoimmune encephalitis?

The Covid 19 pandemic spread its insidious tentacles all over the world. Scientific papers, chapters of books and entire university courses can be colunted on to outline and delve deep into the wide spread effects on all levels of society that Covid has caused. For the AE community we are not only affected by the general Covid effects but possibly, also, in relation to our own ongoing AE journeys

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IVIG Side Effects: When to Seek Medical Attention

Understanding the most common, mild side effects of immune globulin (IG) therapy is important when setting proper expectations during treatment. It is also important to recognize when unexpected side effects occur, and what to do about them.

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A Mighty Miracle

Whether you are a parent or grandparent to a child who has been thrown into the world of autoimmune encephalitis, or into the world of rare disabilities ( or a physician, therapist, special education teacher, or social worker…) I was moved to publish my story “To Add a Miracle” to provide you with further insight and strength.

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Who do you become when you are sleepy?

Sleep experts recommend that most adults get 7-9 hours of good-quality sleep each day to avoid the myriad of issues that can occur when the brain and body are sleep-deprived. We all know what it is like to be tired. We may feel cranky and sluggish, as well as physically and mentally exhausted.

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You’re alive, you’re breathing, and growing older is a privilege

For those AE survivors, let gratitude carry us. For the caretakers, bless you. For those still struggling, please keep fighting the good fight. We are all here for you. When I first awoke in the hospital, I felt like a 90-year-old man. A weak, tired old man with no autonomy. A man that could barely move or speak. A man at the end of his life. Coming in and out of consciousness, I had a lot to think about (because I had nothing else to do).

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What are intracellular and extracellular antibodies and what do the differences mean for patients with autoimmune encephalitis?

There are many subtypes of autoimmune encephalitis (AE) that vary in their causes, the symptoms that patients experience, and what treatments are most effective. One of several factors that distinguish these different subtypes of AE is whether they involve intracellular or extracellular antibodies. In this post we will explore exactly what these terms mean and how they contribute to the differences between types of AE.

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Your Potential Self is Infinite

What started as a journey north from Texas to hunker down during the pandemic in a little mountain town in British Columbia, evolved into a permanent move back to Canada and the realization of a dream to build our forever home on the edge of a lake, surrounded by mountains. I have to keep pinching myself to believe that’s it’s real, but I wouldn’t be here without supportive friends and family.

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Why are brain injuries so misunderstood?

We’ve all heard it. “What the heck? You look fine to me!”
Or “It’s been months! Get over this brain injury stuff! Move on already!”
#1  Blame it on Hollywood!
Movies and television have spread so much misinformation about brain injuries it is practically criminal!!
Hollywood has convinced people that if you have a brain injury you have to look it! You have to drag one foot, or have speech problems, or in some manner “look” disabled.

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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.

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Treatments for Autoimmune Encephalitis

Though it can be challenging for doctors to correctly identify and diagnose autoimmune encephalitis (AE), once patients do indeed receive a proper diagnosis there are treatment options that can go a long way in alleviating their symptoms sending them down the road to recovery.

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Friendships After A Brain Injury

Essentially friends of most brain injury survivors fall into four categories with a small amount of overlap: Friends who knew you before your brain injury; Close friends who are seeing you through the brain injury and recovery; Friends who met you or got to know you during the brain injury and recovery. Friends who are getting to know you after the brain injury and recovery.

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Peripheral monocytes and soluble biomarkers in autoimmune encephalitis

Autoimmune encephalitis (AE) is a condition in which inflammation occurs in various regions of the brain. In AE a person’s immune system produces antibodies (proteins) that mistakenly targets components of the person’s own neurons (nerve structures). This can result in inflammation and nerve tissue damage.

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Daisy the Amazing Rough Rider: Part 6

I am here! I am still fighting every day, and I sometimes feel this Autoimmune Encephalitis(AE) road to recovery is one rough ride! I suppose on many days and in many ways, I could be called Rough Rider Daisy!

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What is a headache?

In the news or on your favorite medical drama you may have been startled to see patients are kept awake during brain surgery. If not, we’ve included an example here! Although it feels wild to witness awake surgeries, they’re possible because the brain itself cannot sense any pain. Despite the lack of pain sensed by the brain, most people do experience head pain at some point in their life, including headaches.

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Why does it feel like we know so little about autoimmune encephalitis?

When you or someone you love is diagnosed with a disease like autoimmune encephalitis, the seemingly slow pace at which research progresses can feel frustrating. It’s hard to watch loved ones suffer while wondering why someone hasn’t used their knowledge and resources to find a solution that will make them feel better.

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