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ae wARRIOR pERSONAL sTORIESAND TOPICS OF INTEREST
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.
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.
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.
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.
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’!
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.
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.
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
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.
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.
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.
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).
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.
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.
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.
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.
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.
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.
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.
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!
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.
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.
AE Awareness Month 2023: Brain on Fire
As we head into February 2023 and Autoimmune Encephalitis Awareness month 2023, we, the staff at IAES, are super excited about how far awareness has come for Autoimmune Encephalitis. There is ever increasing treatment options for AE, ongoing research and clinical trials, increased membership (which speaks to awareness), ongoing recognition, and increased knowledge of more and more types of AE.
Psychiatric Manifestations of Autoimmune Encephalitis
Psychiatric problems are common in autoimmune encephalitis and can imitate mental health conditions, for example psychotic illnesses like schizophrenia. It is important to separate patients with AE from those with mental illness as treatments are very different.
What are the different types of autoimmune encephalitis?
Receiving a diagnosis of autoimmune encephalitis can be a stressful and uncertain time for many patients and their families. And to make it even more confusing, doctors often don’t just give patients a diagnosis of autoimmune encephalitis, but rather anti-NMDAR or anti-Hu or anti-GABAA encephalitis.
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.
Holiday Gift Guide for Those with Neurological Issues
The holidays are a busy time for everyone. For those of us with neurological issues and for those that care for us, this busyness may seem overwhelming at times. In 2021 Brain & Life magazine published an article that may make one part of the holiday season a small bit easier and much more fun.
How does the brain heal from autoimmune encephalitis and why is there so much variability in the healing process?
The holy grail! The million-dollar question! How long will it take to get rid of AE, to heal from AE…when will we feel and act ‘normal’ again? Why do we not understand more of the healing process’ from a diagnosis of autoimmune encephalitis?
Kara McGaughey and the team at PennNeuroKnow help us further understand just how complex and individual our brains are!
Fatigue and Autoimmune Encephalitis: You’re Not Alone
Imagine you just pulled out a load of laundry from the dryer, and as you begin to get into the groove of folding clothes, out of nowhere, you have a profound loss of energy (1). What you are experiencing is called fatigue. Fatigue is different from drowsiness or sleepiness. For example, drowsiness is the need for sleep whereas sleepiness is the likelihood of being able to fall asleep (1, 3). To clarify, fatigue is the overwhelming feeling of tiredness, weakness, and a complete lack of energy (3).
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