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Blood, Sweat, and Clusterin

Blood, Sweat, and Clusterin

January 26, 2022 | by Nitsan Goldstein, New insights into the link between exercise and improved cognition

If you’ve been following the developments in COVID-19 treatments over the last year, you’ve probably heard of monoclonal antibodies being used to treat people with severe cases of COVID. Monoclonal antibodies are produced and circulated through the blood when your body fights off an infection. Scientists have figured out how to extract these antibodies from the blood of patients who have recovered from COVID and inject them into patients that are in earlier stages of the disease. While treatments like these are certainly amazing medical feats, it is not all that surprising that contents from the blood of a person who has successfully fought off an infection might help someone else fight the same virus. It turns out, though, that antibodies are not the only proteins circulating in your blood that could improve someone’s health.

We’ve known for hundreds of years that certain qualities about a person make them more or less likely to have strong cognitive skills like memory. Being young, for example, means your memory is likely strong while being older or suffering from diseases like Alzheimer’s means your memory is weaker. Another such factor is the degree to which you exercise. Exercise improves cognitive skills and can help improve memory in people suffering from dementia. For many years, scientists have asked how these factors actually improve brain function. 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.

In 2014, a study was published showing that simply taking blood from young mice and infusing it into older mice could improve the older mice’s performance on memory tasks1. This result was exciting because it suggested that not only could memory impairments of older mice be reversed, but also that they could be reversed by some molecule that was circulating in the blood of young mice. This month, the same group published another study showing that much like the blood of young mice, the blood of mice that had been exercising regularly could also improve other mice’s ability to perform a memory task2. Recent technological advancements allowed them to identify one of the specific proteins in the blood that was mediating the effects in the brain.

The researchers started by infusing plasma, or the liquid part of blood, that was taken from mice that had access to a running wheel for 28 days into mice that did not have access to a wheel. They found that sedentary mice that received plasma infusions from exercised mice (1) performed better on memory tasks, (2) displayed increased neurogenesis, a process believed to be important for memory, and (3) showed evidence of decreased inflammation in the brain. This last finding was intriguing considering the negative impact neuroinflammation can have on learning and memory and the strong link between neurodegenerative diseases like Alzheimer’s and a heightened inflammatory state3,4.

To further probe the relationship between inflammation and memory, the group decided to inject an inflammatory agent and measure changes in the brain with or without plasma taken from exercised mice. They focused on the hippocampus, a region that is crucial for the formation of memories and is prone to degeneration in neurodegenerative diseases. The scientists examined the changes in gene expression or the proteins that will be produced by cells in the hippocampus, after injecting mice with lipopolysaccharide (LPS), which causes an inflammatory response. LPS injection caused changes in gene expression in the hippocampus, but many of these changes were reversed after treatment with plasma from exercised mice. Next, the researchers wanted to pinpoint the protein or proteins in the blood that are responsible for reversing these LPS-induced changes in gene expression. After identifying several candidate proteins, they repeated the experiment, only this time some mice got plasma where one of the candidate proteins was removed before the infusion. They found that one protein, in particular, clusterin, was essential for the beneficial effects of exercised plasma on neuroinflammation. When clusterin was removed from exercised plasma, many of the effects on LPS-induced inflammation in the hippocampus were gone. Even more convincing, the researchers found that injecting clusterin alone was able to reverse some neuroinflammation caused by LPS.

So what are we waiting for? How can we get our hands on clusterin so that we can reap the benefits of exercise from the comfort of our couches? Before you start looking for clusterin vendors on the internet, it’s important to keep a few things in mind. First, it’s important to remember that these studies were performed in mice. The authors of the study did, however, begin to look at some of these pathways in exercised humans. They exposed one group of veterans with mild cognitive impairment to an exercise regimen and found that some of the changes in protein levels that they observed in mice were also present in humans, including increased levels of clusterin. Much more work is needed to further characterize gene expression and protein changes in humans after exercise and to link these changes to improved cognition. Another important point is that the true biological basis of the cognitive benefits of age and exercise is almost guaranteed to be more complicated than a single or even a handful of proteins circulating in the blood. Moreover, altering gene expression or proteins involved in these very crucial pathways can carry risks independent of their effects on memory. Therefore, highly controlled clinical trials must first conclude that these treatments are safe before even considering their efficacy. There are, however, ongoing clinical trials using plasma from young donors to treat neurodegenerative diseases like Alzheimer’s and Parkinson’s Disease5, giving us hope that one-day studies like these will lead to more informed and effective treatments for neurological diseases.

 

References

  1. Villeda SA, Plambeck KE, Middeldorp J, Castellano JM, Mosher KI, Luo J, et al. Young blood reverses age-related impairments in cognitive function and synaptic plasticity in mice. Nat Med. 20, 659-63 (2014).
  1. De Miguel Z, Khoury N, Betley MJ, Lehallier B, Willoughby D, Olsson N, Yang AC, et al. Exercise plasma boosts memory and dampens brain inflammation via clusterin. Nature. Epub ahead of print (2021). 
  1. Monje ML, Toda H, Palmer TD. Inflammatory blockade restores adult hippocampal neurogenesis. Science 302, 1760-5 (2003).
  1. Glass CK, Saijo K, Winner B, Marchetto MC, Gage FH. Mechanisms underlying inflammation in neurodegeneration. Cell 140, 918-34 (2010).
  1. “Young Plasma.” Alzforum. https://www.alzforum.org/therapeutics/young-plasma 

Cover image by roxanawilliams1920 from Pixabay https://pixabay.com/photos/running-woman-fitness-runner-6252827/ 

 

 

 

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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 - Blood, Sweat, and Clusterin For this 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 - Blood, Sweat, and Clusterin

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

Aphasia as a Symptom of Autoimmune Encephalitis

May-26-2020 | Sarah Reitz, PennNeuroKnow.com

 

 Aphasia is a language disorder affecting at least 2 million Americans that impairs the ability to produce or comprehend speech, along with the ability to read or write1. It can result from any injury or disease that damages the language centers of the brain2, including autoimmune encephalitis (AE). To better understand aphasia in the context of AE, it is important to first know how the brain processes language as well as the different types of aphasia that can occur as a result of damage to any of these language centers.

How is language processed in the brain?

The ability to comprehend and use language is a complicated process that involves many regions of the brain. A few of the areas typically associated with language include Broca’s area, Wernicke’s area, the insular cortex, and the angular gyrus (Figure 1). Broca’s area, found in the left frontal cortex, together with the insular cortex, are important for producing language (called expressive language). Wernicke’s area and the angular gyrus, both located in the temporal lobe, play a major role in understanding the context and meaning of language (called receptive language)3-5.

What is aphasia?

There are many different types of aphasia, ranging from mild forms that involve occasionally struggling to find the right words, to much more severe forms that limit nearly all forms of communication. The level of aphasia varies dramatically from patient to patient, with each person having his or her own unique language difficulties. Still, aphasia has been classified into a few main subtypes based on the main language deficits experienced by the patient (Figure 2).

 

One of the more mild forms of aphasia is anomic aphasia. People with anomic aphasia have difficulty finding the right words or naming things, sometimes describing the phenomenon as having the word on the tip of their tongue. However, they can often describe the word in detail, such as “the blue pants made of denim” when they are looking for the word “jeans”. Sometimes, patients will only have difficulty naming specific categories of words (such as nouns, or only words related to a specific activity), though the reasons for this are unknown. They are able to speak and write fluently, though they will often use vague terms to describe the word they are having difficulty with. Additionally, the ability to read remains intact6.

 

Intermediate forms of aphasia include Broca’s aphasia and Wernicke’s aphasia2,6. Like their names suggest, these types of aphasia result mainly from damage to either Broca’s or Wernicke’s areas. Broca’s aphasia is sometimes known as “non-fluent aphasia” due to the extreme difficulties in speech production experienced by the patient. Expressive language is severely limited, with speech oftentimes consisting of fewer than 4 words at a time. In contrast, patients with Wernicke’s aphasia can still produce fluent speech without much effort, but their ability to understand the meaning of words is impaired. So, while they can connect words into sentences and speak easily, the sentences themselves will usually not make sense and often consist of jumbled, disjointed words. Because comprehending the meaning of words is damaged, patients with Wernicke’s aphasia also have a very difficult time with reading and writing. Other people experience various combinations of these two types of aphasia, which are classified in Figure 2 based on the symptoms exhibited6.

The most severe form of aphasia is global aphasia. This disorder severely limits both receptive and expressive language. The ability to read and write is nearly nonexistent, as patients can neither comprehend nor produce language. While their language abilities are almost absent, patients with global aphasia can have normal non-language related intellectual and cognitive capabilities2,6.

Interestingly, aphasia is not limited to written and spoken languages. Because visual languages like sign language are also processed and produced by the language centers of the brain7, they can also be impaired, causing sign language speakers to lose the ability to use or understand sign language2,8.

Aphasia in autoimmune encephalitis

Aphasia is caused by damage to the language centers of the brain. While strokes are the most common cause9, any disease or injury that damages the regions of the brain involved in language can cause aphasia. These include things like brain tumors, traumatic brain injuries, progressive neurodegenerative disorders, and autoimmune encephalitis. The specific regions damaged by the injury or disease will determine which type of aphasia results2.

 

There are multiple case reports that document instances of aphasia in patients with autoimmune encephalitis. Many of these patients suffer specifically from anti-NMDAR encephalitis10-13, although aphasia has also been recorded in other types of AE14. A 5-year study of 501 patients diagnosed with anti-NMDAR encephalitis tracked symptom development and found that speech problems are common early symptoms. Around 70% of patients over the age of 12 showed some form of a speech disorder, while nearly 85% of those younger than 12 exhibited symptoms of a speech disorder10! In at least one case, however, aphasia developed 19 months after the first AE symptoms, suggesting that there is no definitive timeframe for development of this disorder12.

 

Various types of aphasia have been reported with AE. Some patients show symptoms similar to Broca’s aphasia, with effortful speech and trouble producing language11. Others have reported more severe, global aphasia consisting of trouble both comprehending and expressing language12. In one case, a woman with anti-NMDAR encephalitis had persistent aphasia for 6 months with no other symptoms typically experienced in AE13. What is clear is that aphasia in AE, just like aphasia caused by other injuries or disease, exists on a spectrum and can include any number of language impairments.

 

 

Recovery from aphasia

Because so many injuries and diseases can cause aphasia, there is no standard treatment for the disorder. Each patient must be treated individually, taking many factors into consideration. However, speech-language therapy is critical for all types of aphasia2.

 

One major factor considered in treatment plans is the cause of the aphasia. Aphasias resulting from neurodegenerative disorders show much lower rates of recovery due to the progressive nature of the neurodegeneration15. However, aphasia resulting from other causes will usually show at least some degree of improvement with proper treatment2. In the case of autoimmune encephalitis, aphasia symptoms tend to disappear once appropriate treatment for the underlying encephalitis is administered11-14.

 

Other factors that may determine a patient’s outcome are the type of aphasia the patient is experiencing as well as the level of communication skills prior to aphasia onset. A rich vocabulary before the onset of aphasia tends to predict a better recovery2.

 

Advancements in aphasia research, and the underlying diseases that cause it will continue to inform better treatments, improving outcomes for millions of people across the world and helping them regain their communication abilities.

Download Aphasia .pdf

Image References:

Figure 1 image via The Conversation, CC BY-ND. https://theconversation.com/what-brain-regions-control-our-language-and-how-do-we-know-this-63318

Figure 2 image via the National Aphasia Association, https://www.aphasia.org/graphic-assets/

References:

  1. Aphasia Statistics. National Aphasia Association Available at: https://www.aphasia.org/aphasia-resources/aphasia-statistics/. (Accessed: 2nd May 2020)
  2. Damasio AR (1992) Aphasia. NEJM 326(8):531-539
  3. Friederici AD (2011) The brain basis of language processing: from structure to function. Physio Review. 91(4)1357-1392
  4. Van Ettinger-Veenstra H, McAllister A, Lundberg P, Karlsson T, Engstrom M (2016) Higher language ability is related to angular gyrus activation increase during semantic processing, independent of sentence incongruency. Hum. Neurosci. 10:110
  5. Oh A, Duerden EG, Pang EW (2014) The role of the insula in speech and language processing. Brain Lang. 135:96-103
  6. Aphasia Definitions. National Aphasia Association Available at: https://www.aphasia.org/aphasia-definitions/. (Accessed: 2nd May 2020)
  7. Hickok G, Love-Geffen T, Klima ES (2002) Role of the left hemisphere in sign language comprehension. Brain and Lang 82:167-178
  8. Damasio A, Bellugi U, Damasio H, Poizner H, Van Gilder J (1986) Sign language aphasia during left-hemisphere amytal injection. Nature 322:363-365
  9. Aphasia FAQs. National Aphasia Association. Available at: hyyps://www.aphasia.org/aphasia-faqs/. (Accessed: 2nd May 2020)
  10. Titulaer M et al. (2013) Treatment and prognostic factors for long-term outcome in patients with anti-NMDA receptor encephalitis: an observational cohort study. Lancet Neurol 12:157-165
  11. Bhat P, Ahmed A, Jolepalem P, Sittambalam C (2018) A case report: anti-NMDA receptor encephalitis. Journal of Comm Hospital Internal Med Perspect 8(3):158-160
  12. Mario LSJ, Ramiro R, Ruth DVA, Jose F, Carmen OL, Mariana EN (2017) Cortical aphasia and apraxia as main clinical presentation of anti-NMDAR encephalitis relapse with a positive CSF PCR for cytomegalovirus. Neuropsych 7(5):620-628
  13. Constantinides VC et al (2018) Anti-NMDA receptor encephalitis presenting as isolated aphasia in an adult. Neurocase 24(4)188-194
  14. Hayata Y, Hamada K, Sakurai Y, Sugimoto I, Mannen T, Takahashi Y (2014) Anti-glutamate ε2 receptor antibody-positive and anti-N-methyl-D-aspartate receptor antibody-negative lobar encephalitis presenting as global aphasia and swallowing apraxia. Case Rep Neurol 6:291-296
  15. Primary Progressive Aphasia. National Aphasia Association Available at: https://www.aphasia.org/aphasia-resources/primary-progressive-aphasia/. (Accessed 12th May 2020)

 

Become an Advocate by sharing your story. It may result in someone receiving an accurate diagnosis who is suffering right now and 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.

 

 

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

My continued story about having Autoimmune Encephalitis

May-13-2020 | Shadazah Brown (known as Daisy)

A year ago we introduced you to Shadazah Brown in her piece, A Diagnosis for Daisy. Today she shares an update to her continuing journey. 

December 31, 2019 at 10 p.m., I had a seizure at home. I woke up the following year, January 1, 2020, in the hospital. I didn’t even get to see the ball drop and celebrate with my family.

I woke up crying in so much pain, hooked up to the plasmapheresis catheters in my neck. Some of my hair had been cut for the EEG machine. My stomach hurt because of dry heaves. I felt like nothing.

Since my diagnosis with AE in 2017 — which began with a seizure in a store that caused me to split my forehead open — my seizure medications have been changed regularly to manage my epilepsy. I am also diabetic, meaning the steroid treatments have resulted in additional trips to the hospital to manage high- and low blood sugars. In that same time, the doctors have decided to give me plasmapheresis treatments every three months.

My depression has kicked in much more and I have lost all communication with my friends and family members. I think they understand what it’s like to be great living a normal 24-year-old life. Working, driving, had a boyfriend, friends, having fun. Then you go to worrying about yourself 24/7 because you the diagnosis requires it. I didn’t ask for this.

Being told you’re totally disabled at the age of 24 hurts a lot. I couldn’t celebrate my 25th birthday because I had plasmapheresis surgery since I needed the treatment right away. I still want to be able to work, drive, drink, party, and live a healthy young person’s life.

I miss having fun so much. I watch so many videos and look at pictures and I cry. People I thought were friends and truly cared, who would be there compassionately, haven’t been. I’ve spent the last two years alone. I have a couple of friends that are still there but remain somewhat distant.

Now that I have to go to hemoglobin infusion once a week for five hours at a time, I have made new friends who are actually older than me and they are really good people to talk to. (Sometimes, I really miss them and can’t wait until infusion… LOL.)

 

 

Become an Advocate by sharing your story. It may result in someone receiving an accurate diagnosis who is suffering right now and 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.

 

 

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

Announcing Autoimmune Encephalitis Trivia Cards

The Biggest World Event Occurring in celebration of World Encephalitis Day 2020. The First AE Product in the World! A Real Game Changer.

Created by

International Autoimmune Encephalitis Society

in collaboration with Dr. Josep Dalmau

(World renown expert who identified the disease and put AE on the map. All proceed directly support Dr. Dalmau’s research group.)

Ships Worldwide!!

 

 

 

 

 

Download Flyer

 

 

 

 

 

 

  • In Collaboration with Josep Dalmau~ All proceeds directly support Dr. Josep Dalmau’s research group.

  • Creator/Author: Tabitha Orth~IAES President

  • Medical Editor: Dr. Daria Muir~IAES Secretary/Board of directors

  • Cover Art: Julia King~ Facebook/artbyjuliaking

  • Technical Assistant: Melody Wilson~IAES Technical Director

It is the Season When We Give Thanks

Barbara Layt Vujaklija | November 28-2019

No matter the origins in your part of the world, during the autumn or early winter there is usually some sort of harvest or thanksgiving festival. A time for people to share the earth’s bounty with friends and family and gather together to renew and strengthen the bonds we share.

Growing up in England I remember being paraded from school across the village street to the local church which was decked out with bales of sweet-smelling hay, turnips, parsnips, carrots and all manner of other foodstuffs (both fresh and canned or purchased), plus magnificent late flowering plants. The church was filled with the earth’s splendor and the folk of the village. We elementary school children dressed in our best took our place in the choir stalls. After the sermon, we were to sing a few songs that expressed everyone’s thanks for the bounty before us. The foodstuff was later distributed to the poor of the village.

Since coming to live in America at the age of 20, I have discovered a new way of giving thanks to the earth’s bounty and family and friends.  I have found the customs of Thanksgiving here in the USA to be comforting and enriching.

What am I, as someone with Autoimmune Encephalitis, thankful for?

I am thankful for my improving health, and for my family who has stayed beside me during my trials. I am especially thankful for my son-in-law and daughter who came to live with us to be my caregiver. Thanks to Toys-for-Tots and local food drives, I still have the satisfaction of helping those less fortunate than myself.

Here, at the International Autoimmune Encephalitis Society, we asked members what they were thankful for.  Their responses are below:

Thanks for understanding

For this Thanksgiving, I am a warrior who is thankful for my husband, my family, my neighbors, and IAES. These people know that despite having AE I still have a lot of knowledge and am an intelligent woman.

I am so thankful for everyone at the International Autoimmune Encephalitis Society, they help me to feel that I will make it through this, my husband who has learned to deal with my poor memory, my family who supports me, our awesome neighbours and everyone in this world who has learned in one way or another that disabled people have so much to offer.   – Mari Wagner Davis

 Thanks for loving and listening

I am thankful to have a loving kind man that has been with me every step of the way and helps me cope every day. I am also thankful for my best friend who listens and talks to me about anything and whatever I need.  – Katherine Crow

Thanks for life and a new me

Life ?? Thankful to still be alive and getting the chance at the new me. We all know the outcome could always be worse with this disease. Happy Thanksgiving.    -Dayna Burns Rudy Munoz

Thanks to the Lord

For Thanksgiving, I want to say I am very thankful for the Lord being present with me and carrying me through a three year battle with AE. Especially when I was hallucinating in the psychiatric hospital, thinking everyone was plotting to kill me. He gave me a peace that I would survive and be OK. And I was.
-Wayne L. Wall

Thanks for hope, life, love

I am thankful that despite everything I can still have some semblance of a normal life, that my husband still loves me and cares for me despite everything, and I still have hope, love, life, my children, husband and the best of my friends and family in my life. I’m thankful that the chaff has been able to be cut away, so I can enjoy and wholeheartedly love those who are genuine in my life.
-Cathy Bolton

Life and smiles

I am thankful that my son did not die when he first got sick. He was very close. I am thankful that he was given a cheerful, strong and enduring spirit that touches the lives of so many he knows. I am thankful for his smiles and that he always compliments people and wants to care for them. I am thankful for the opportunity to enjoy the gift of every day and the ability to live a full life with him. Happy Thanksgiving!
Lora Strange

This group

I’m thankful for finding this group because many of my questions have been answered here. Also because I don’t feel like a strange person anymore.
Michelle M. Caamaño

Caregivers

I’m thankful for my husband and son who are also my caregivers.
Amy Underwood-Crossley

 

Make a Comment below to share what you are Thankful for

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

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

 

After 25 Years, a Proper Diagnosis-Autoimmune Encephalitis!

October 30-2019 | Lauren Mabry

In 1994 when I was 9 years old I was diagnosed with Epilepsy with partial complex seizures after my mom witnessed a bizarre event where my arm jerked wildly and I fell to the ground. These events occurred multiple times and I underwent EEG testing, MRI, and all the tests came back normal. We tried a few anti-epileptic drugs and eventually found one that seemed to stop the episodes. Fast-forward a few years and I started to have breakthrough seizures…

This became the routine: find a drug that worked, maybe have a breakthrough seizure, up the dose, breakthrough, worry about having a breakthrough, or maybe go years and be fine.Things were challenging for me off and on throughout college as I seemed to be unable to stabilize my episodes for a year or two. And then I was fine for many years up until I was told I had to switch medication to get pregnant and so I did. I switched to the “safest’ medication and things seemed to be fine until about halfway through my pregnancy with my first son in 2015 and then things went haywire. I suffered these partial seizures every ten minutes. I hardly slept. I had to go on short term disability from my job at 5 months pregnant. I could barely speak. Eventually things semi-stabilized.

The goal was always to go back on Topamax, the drug I had been on before my pregnancies as it had been working, but when I finally switched back to this drug in November 2018 my body appeared to just reject it and instead I just started to have multiple episodes per day. My doctor. sent me to the hospital for inpatient video EEG monitoring. I was in the hospital for about 3.5 days where I had 87 episodes. I barely slept.

On the last day in the hospital my doctor took bloodwork for an autoimmune panel. It was the last thing we did while I was in the hospital and at the time I barely thought anything of it. At my follow-up appointment my neurologist told me I have autoimmune encephalitis – my brain is on fire. We did a round of prednisone steroids where I could literally feel my brain cooling down. Within a couple of days of being on the prednisone my seizures that I had experienced multiple times a day for 4 years stopped completely.  We followed up the oral prednisone with IV Solu-Medrol and it’s now been 8 months and I’m still seizure free AND off my anti-epileptic medications.

Autoimmune encephalitis is still a very new disease in its infancy of research. It wasn’t even discovered and published until almost 12 years after my initial diagnosis of epilepsy. I saw neurologists in VA, at Johns Hopkins, and UCLA over the years and it wasn’t until I moved to Pittsburgh, PA that I was finally properly diagnosed.  I don’t say this to place blame on any of my previous doctors, but to raise awareness that it can save your life to get a second or even third opinion about what is going on in your body.

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

 

Become an Advocate by sharing your story. It may result in an 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 

 

Introducing the IAES and PennNeuroKnow Partnership

October 16-2019 | Carolyn Keating and Sarah Reitz

Hello AE Community!

 

Our names are Carolyn and Sarah, and we are happy to announce the partnership between IAES and our blog, PennNeuroKnow (PNK).  We are working with IAES to learn about topics that patients and families in the AE community have trouble understanding, in order to create handouts and blog posts that explain these issues in a way that’s easy to digest.  We’re excited to begin this alliance and to introduce our team to the AE community.

PNK is a blog we founded in early 2018 to dive into the complex field of neuroscience and simplify it so that anyone can understand.  Including the two of us, we have 6 writers creating weekly articles ranging from general topics like how the brain produces curiosity, to breaking down specific journal articles on subjects like how the bacteria in your gut may be linked to depression.  All of us are PhD students in the University of Pennsylvania’s Neuroscience Graduate Group who are committed to better communicating science.  We know that scientific studies are sometimes difficult to both access and understand, so we want to use our training as scientists to share our passion for neuroscience and make our field more accessible to everyone.

We were first introduced to IAES in July 2019, when Carolyn wrote about NMDAR encephalitis in a blog post called When Your Brain is on Fire.  IAES saw the post and shared it on their Facebook page, giving the article much greater reach than we normally experience.  The amount of positive feedback we have received from the AE community has been overwhelming, and we are truly grateful to have been able to help so many people understand the science behind the disease that has affected themselves or a loved one.  Now thanks to IAES President Tabitha Orth reaching out to us about forming a partnership, we are excited to produce more easy-to-read articles on complex topics important to the AE community.

All of our writers are looking forward to learning more about AE and the issues that are difficult for patients and families to grasp.  Already we are hard at work learning and writing about how AE relates to the immune system, memory loss, and FDG-PET scans, just to name a few topics.  We hope that we can use our strengths as neuroscientists to help translate complicated subjects and journal articles into something everyone can understand, and are excited to contribute to this wonderful community. We want to make sure we are writing about topics that are most important to you and your family members, so please do not hesitate to reach out to either Tabitha or us with topics you would like to learn more about!

Get In Touch with IAES

Get In Touch with PNK

E-mail Sarah and Carolyn Directly at PNK 

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

 

 

Become an Advocate by sharing your story. It may result in an 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 

 

Caregiver Stress and Burnout. Tips for Regaining Your Energy, Optimism, and Hope

September 18, 2019 | Melinda Smith, M.A.

The demands of care giving can be overwhelming, especially if you feel that you’re in over your head or have little control over the situation. If the stress of care-giving is left unchecked, it can take a toll on your health,
relationships, and state of mind eventually leading to caregiver burnout. And when you’re burned out, it’s tough to do anything, let alone look after someone else. That’s why taking
care of yourself isn’t a luxury, it’s a necessity. There are plenty of things you can do to rein
in the stress of care-giving and regain a sense of balance, joy, and hope in your life.

What is caregiver burnout?

Caregiver burnout is a state of emotional, mental, and physical exhaustion caused by the
prolonged and overwhelming stress of care-giving. While caring for a loved one can be very rewarding, it also involves many stressors. And since care-giving is often a long-term challenge, the stress it generates can be particularly damaging. You may face years or even decades of care-giving responsibilities. It can be particularly disheartening when there’s no hope that your family member will get better or if, despite your best efforts, their condition is gradually deteriorating.

If you don’t get the physical and emotional support you need, the stress of care-giving can leave you vulnerable to a wide range of problems, including depression, anxiety, and eventually burnout. And when you get to that point, both you and the person you’re caring for suffer. That’s why managing the stress levels in your life is just as important as making sure your family member gets to their doctor’s appointment or takes their medication on
time. No matter how stressful your care-giving responsibilities or how bleak your situation seems, there are plenty of things you can do to ease your stress levels, avoid caregiver burnout, and start to feel positive and hopeful again.

Signs and symptoms of caregiver stress and burnout

By learning to recognize the signs of caregiver stress, you can take steps to deal with the problem and prevent burnout. Or if you recognize that you’ve already hit your breaking point, you can take action right away. Once you burn out, care-giving is no longer a healthy option for either you or the person you’re caring for, so it’s important to watch for the warning signs.

Common signs and symptoms of caregiver stress

  • Anxiety, depression, irritability
  • Feeling tired and run down
  • Difficulty sleeping
  • Overreacting to minor nuisances
  • New or worsening health problems
  • Trouble concentrating
  • Feeling increasingly resentful
  • Drinking, smoking, or eating more
  • Neglecting responsibilities
  • Cutting back on leisure activities

Common signs and symptoms of caregiver burnout

  • You have much less energy than you once had
  • It seems like you catch every cold or bout of flu that’s going around
  • You’re constantly exhausted, even after sleeping or taking a break
  • You neglect your own needs, either because you’re too busy or you don’t care anymore
  • Your life revolves around care-giving, but it gives you little satisfaction
  • You have trouble relaxing, even when help is available
  • You’re increasingly impatient and irritable with the person you’re caring for
  • You feel helpless and hopeless

While caring for a loved one will never be stress-free, the following tips can help you to lighten the load, avoid the symptoms of caregiver burnout, and find more balance in your life.

Avoid caregiver burnout by feeling empowered

Feeling powerless is the number one contributor to burnout and depression. And it’s an easy trap to fall into as a caregiver, especially if you feel stuck in a role you didn’t expect or can spend a tremendous amount of energy dwelling on things you can’t change and for helpless to change things for the better. But no matter the situation, you aren’t powerless. This is especially true when it comes to your state of mind. You can’t always get the extra
time, money, or physical assistance you’d like, but you can always get more happiness and hope.

Practice acceptance. When faced with the unfairness of a loved one’s illness or the burden of care-giving, there’s often a need to make sense of the situation and ask “Why?” But you which there are no clear answers. And at the end of the day, you won’t feel any better. Try to avoid the emotional trap of feeling sorry for yourself or searching for someone to blame.

Embrace your caregiving choice. Acknowledge that, despite any resentments or burdens you feel, you have made a conscious choice to provide care. Focus on the positive reasons behind that choice. Perhaps you provide care to repay your parent for the care they gave you growing up. Or maybe it’s because of your values or the example you want to set for your children. These deep, meaningful motivations can help sustain you through difficult
times.

Look for the silver lining. Think about the ways care giving has made you stronger or how it’s brought you closer to the person you’re taking care of or to other family members.

Don’t let care-giving take over your life. Since it’s easier to accept a difficult situation when there are other areas of your life that are rewarding, it’s important not to let caregiving take over your whole existence. Invest in things that give you meaning and purpose whether it’s your family, church, a favorite hobby, or your career.

Focus on the things you can control. You can’t wish for more hours in the day or force your brother to help out more. Rather than stressing out over things you can’t control, focus on how you choose to react to problems.

Celebrate the small victories. If you start to feel discouraged, remind yourself that all your efforts matter. You don’t have to cure your loved one’s illness to make a difference. Don’t underestimate the importance of making your loved one feel more safe, comfortable, and loved!

Get the appreciation you need

Feeling appreciated can go a long way toward not only accepting a stressful situation, but enjoying life more. Studies show that caregivers who feel appreciated experience greater physical and emotional health. Care-giving actually makes them happier and healthier, despite its demands. But what can you do if the person you’re caring for is no longer able to feel or show their appreciation for your time and efforts?

Imagine how your loved one would respond if they were healthy. If they weren’t preoccupied with illness or pain (or disabled by dementia), how would your loved one feel about the love and care you’re giving? Remind yourself that the person would express gratitude if they were able.

Applaud your own efforts. If you’re not getting external validation, find ways to acknowledge and reward yourself. Remind yourself of how much you are helping. If you need something more concrete, try making a list of all the ways your caregiving is making a difference. Refer back to it when you start to feel low.

Talk to a supportive family member or friend. Positive reinforcement doesn’t have to come from the person you’re caring for. When you’re feeling unappreciated, turn to friends and family who will listen to you and acknowledge your efforts.

Ask for care-giving help

Taking on all of the responsibilities of care-giving without regular breaks or assistance is a surefire recipe for caregiver burnout. Don’t try to do it all alone.

Look into respite care. Enlist friends and family who live near you to run errands, bring a hot meal, or watch the patient so you can take a well-deserved break. Volunteers or paid help can also provide in-home services, either occasionally or on a regular basis. Or you can
explore out-of-home respite programs such as adult day care centers and nursing homes.

Speak up. Don’t expect friends and family members to automatically know what you need or how you’re feeling. Be up front about what’s going on with you and the person that you’re caring for. If you have concerns or thoughts about how to improve the situation, express
them, even if you’re unsure of how they’ll be received. Start a dialogue.

Spread the responsibility. Try to get as many family members involved as possible. Even someone who lives far away can help. You may also want to divide up care-giving tasks. One person can take care of medical responsibilities, another with finances and bills, and another with groceries and errands, for example.

Set up a regular check-in. Ask a family member, friend, or volunteer from your church or senior center to call you at a regular time (daily, weekly, or as often as you think you need it). This person can help you spread status updates and coordinate with other family members.

Say “yes” when someone offers assistance. Don’t be shy about accepting help. Let people feel good about supporting you. It’s smart to have a list ready of small tasks that others could easily take care of, such as picking up groceries or driving your loved one to an appointment.

Be willing to relinquish some control. Delegating is one thing, trying to control every aspect of care is another. People will be less likely to help if you micromanage, give orders, or insist on doing things your way.

Give yourself a break

As a busy caregiver, leisure time may seem like an impossible luxury. But you owe it to yourself—as well as to the person you’re caring for—to carve it into your schedule. Give yourself permission to rest and to do things that you enjoy on a daily basis. You will be a better caregiver for it.

There’s a difference between being busy and being productive. If you’re not regularly taking time-off to de-stress and recharge your batteries, you’ll end up accomplishing less in the long run. After a break, you should feel more energetic and focused, so you’ll quickly make up for your relaxation time.

Maintain your personal relationships. Don’t let your friendships get lost in the shuffle of care-giving. These relationships will help sustain you and keep you positive. If it’s difficult to leave the house, invite friends over to visit with you over coffee, tea, or dinner.

Share your feelings. The simple act of expressing what you’re going through can be very cathartic. Sharing your feelings with family or friends won’t make you a burden to others. In fact, most people will be flattered that you trust them enough to confide in them, and it will only strengthen your bond.

Prioritize activities that bring you enjoyment. Make regular time for hobbies that bring you happiness, whether it’s reading, working in the garden, tinkering in your workshop, knitting, playing with the dogs, or watching the game.

Find ways to pamper yourself. Small luxuries can go a long way towards relieving stress and boosting your spirits. Light candles and take a long bath. Ask your spouse for a back rub. Get a manicure. Buy fresh flowers for the house. Whatever makes you feel special.

Make yourself laugh. Laughter is an excellent antidote to stress—and a little goes a long way. Read a funny book, watch a comedy, or call a friend who makes you laugh. And whenever you can, try to find the humor in everyday situations.

Get out of the house. Seek out friends, family, and respite care providers to step in with care-giving so you can have some time away from the home.

Take care of your own health

Think of your body like a car. With the right fuel and proper maintenance, it will run reliably and well. Neglect its upkeep and it will start to give you trouble. Don’t add to the stress of your care-giving situation with avoidable health woes.

Keep on top of your doctor visits. It’s easy to forget about your own health when you’re busy with a loved one’s care. Don’t skip check-ups or medical appointments. You need to be healthy in order to take good care of your family member.

Exercise. When you’re stressed and tired, the last thing you feel like doing is exercising. But you’ll feel better afterwards. Exercise is a powerful stress reliever and mood enhancer. Aim for a minimum of 30 minutes on most days—break it up into three 10-minute sessions if
that’s easier. When you exercise regularly, you’ll also find it boosts your energy level and helps you fight fatigue.

Practice a relaxation technique. A daily relaxation or meditation practice can help you relieve stress and boost feelings of joy and well-being. Try yoga, deep breathing, progressive muscle relaxation, or mindfulness meditation. Even a few minutes in the middle of an overwhelming day can help you feel more centered.

Eat well. Nourish your body with fresh fruit, vegetables, lean protein, and healthy fats such as fish, nuts, and olive oil. Unlike sugar and caffeine—which provide a quick pick-me-up and an even quicker crash—these foods will fuel you with steady energy.

Don’t skimp on sleep. Cutting back on time in bed is counterproductive—at least if your goal is to accomplish more. Most people need more sleep than they think (8 hours is the norm). When you get less, your mood, energy, productivity, and ability to handle stress will suffer.

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

Become an Advocate by sharing your story. It may result in an 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  

Special Thanks to HelpGuide.org for permission to reprint this article.

 

 

IAES Turns 3. Meet Our New Board of Directors

September 5th, 2019

The IAES Board of Directors is a group of committed volunteers. No board member receives compensation. Therefore, we are especially grateful to have the expertise and talents of these dedicated professionals. Our annual election results bring us some familiar faces, who are now in new positions, and some new faces. All of whom are fully dedicated to serving the worldwide autoimmune encephalitis community and advancing our mission.

Tabitha Andrew Orth, President

Dr. Daria Muir, Secretary

Gene Desotell, Vice President

Oksana Sweeney, C.P.A, Treasurer

 

Dear AE Family,

Who would have imagined in 2016 that IAES would change the direction of the AE community?  Yet that is the praise we are hearing from Doctors, patients, caregivers and families from all over the world.

As the community’s only Family/Patient centered non-profit, IAES offers services that were never available before.  IAES provides guidance from when a person first becomes ill all the way through to their recovery/rehabilitation. You find a family you never knew you had with IAES. We take your hand and become your constant BFF resource no matter what challenge you find yourself faced with.

Our free pro-active guide, the ‘First Aid Tool Kit’, has become the ‘go to’ guide in the AE community.

IAES provides information that overturns treatment denials, medical over billing, educational support in understanding treatments, the disease process and what to expect. Guidance to improve relationships with your medical team, resources that affect every avenue of this journey.

Doctors around the world utilize our website to accurately diagnose and treat their patients. A team of doctors in Russia contacted us to thank us for the work we do and reported that the information they were able to access on our website saved their patients’ lives.

Our collaboration with top researchers in Autoimmune Encephalitis continues to widen. The increase in awareness in the medical community has resulted in a much higher rate of patients getting diagnosed faster.  The daily gratitude we receive for our services just might give you a ‘swelled head’, (pun intended), but our work has only just begun!

Celebrate our birthday by becoming an IAES Angel.

When you become an #IAESANGEL, International Autoimmune Encephalitis Society will send you an “I am an IAES Angel” badge and profile frame to place on your Facebook page or Website.  As badges ‘take flight’ heralding IAES has been ‘touched by an angel’, others will take notice and they too may find their wings. Together, we will create a future where AE is eradicated from this world and only referenced in medical history books.

Click image. (note: To become an IAES Angel, select “I would like to designate this donation to a specific fund”, and then select: “I would like to become an IAES Angel”.

 

With Gratitude,

Tabitha Andrews Orth, President,

International Autoimmune Encephalitis Society

E-mail: Tabitha.Orth@autoimmune-encephalitis.org

 

 

 

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

The Story of an Anti-GAD Autoimmune Limbic Encephalitis Survivor

September 4th, 2019 | Leigh Ann Broyles

My struggles with Anti-GAD Autoimmune Limbic Encephalitis started when I fell off the roof of my house. Well, technically my symptoms began way before the so-called “Roof Incident”. For months I had been behaving erratically, feeling physically and mentally exhausted but suffering from insomnia, having terrible headaches, a stiff neck, and vision changes. By the time everyone realized that something was wrong, it was too late for early intervention.

Then came “Roof-apocalypse 2017”. I woke up for work with a large bruise on my hip and leg, and somehow my brain convinced me that it was no big deal. I had fallen off the roof the day before when I was attempting to trim the large tree in our front yard. It was encroaching on our roof, and I had taken matters in to my own hands. I went into work that morning and complained about how much it hurt. The thing is, I have never been up on any roof, let alone my own. I suffer from a fear of heights. Getting up on a foot stool typically has me shaking in my boots. We don’t even have a ladder to climb up on. I was one hundred percent sure that I had been up there, though. My brain remembered falling into the bushes, remembered the impact, and remembered an elderly neighbor coming outside to check on me. Except we don’t have an elderly neighbor, and the tree looked the same. It was still sitting on the roof where it had been all along. I had never been on the roof, and as it turns out, my brain had been lying to me for a while.

A few weeks later, I was late to work, and my boss became worried. I can count on one hand how many times I’ve been late to work in the past 16 years. Being late is exceptionally unlike me, and is one of my pet-peeves. I work as a vet tech for an emergency and critical care department in a very busy specialty veterinary hospital and being late impacts patient care.

My husband had been working overnights at the time, and my boss decided to call him since I wasn’t answering my phone. My husband rushed home in the early hours of the morning and found me in our backyard. I was laying under a bicycle having a grand mal seizure. We still don’t know how long I had been outside, or how long the seizure activity had been happening, but we knew that it was long enough for all of the skin to be worn off of my knuckles, knees, and ankles. I had road rash on one side of my face as well. The date was May 25th, 2017.

I was rushed by ambulance to the closest hospital, and the police were called. My husband (who is the sweetest, most gentle man) was interrogated and accused of beating me. I was accused of being a drug addict and alcoholic. The neurologist on staff refused to acknowledge that my issues were primarily neurological and didn’t even believe that I had suffered from a seizure. He sent out toxicology panels, all which came back negative. At this point, my family was aggravated, and demanded answers. Multiple EEG’s, CT Scans, and MRI’s later, nothing had changed. A false diagnosis of psychological issues vs. potential viral/bacterial meningitis was doled out to them. I was placed on anticonvulsants, IV fluids, and antibiotics (as my white blood cell count was elevated, and my kidneys had taken a hit from prolonged seizure activity).

I seemed to improve, and luckily, was transferred to a physical therapy center. By no means, was I normal at this point, but the neurologist “saw improvement” so he discharged me as quickly as possible. I assume it was like a horrific game of hot potato. I spent an unknown amount of time at the physical therapy hospital. I ended up developing nystagmus on top of my ataxia and aphasia. I had my second seizure, but this time it was witnessed by medical professionals. Honestly, I still don’t remember the first hospital, the physical therapy unit, or the majority of what was to come.

I was taken to my saving grace, Medical City Plano. I entered through the emergency room and was admitted into their neuro ICU. Because my seizure activity was resistant to multiple anti-convulsant medications at that point, I was intubated and placed in a medically induced coma. For the first time since my initial seizure, my family and friends found comfort in a doctor. Dr. Lei Wang (a neuro-hospitalist) took over my case, and oversaw all things relating to my care. She read through all my records and suspected that I may have Autoimmune Limbic Encephalitis. She immediately repeated all scans and started me on methylprednisolone and IVIG. She was, and continues to be, my knight in shining, sparkly high heels. I know that without her knowledge, insights, and willingness to have an open mind, I would likely be dead. Once she initiated treatment, she sent a plethora of antibody testing out. Some took longer than others, but in the end, I tested positive for GAD 65, and I finally had an answer and a diagnosis. I continually improved, ended up extubating myself (whoops!), and started to feel like a human again. When I “woke up” I had no idea why I was in a hospital and had lost all memory of what had happened over the past 4-6 months. I don’t remember moving into our new house. I don’t remember the Christmas before we moved. I don’t remember work, or illness, or anything in between. It’s a blank, blackness in my mind. I existed, but my memories do not.

In total, I received 9 IVIG transfusions, had over 50 IV catheters, two PICC lines, one central line, was on tapering steroids for a year, and two different anti-convulsant medications for a little longer than that. I spent a month hospitalized between the three facilities. I have completely recovered with no signs of relapse and no major lasting effects two years later. I continue to suffer from depression and anxiety and have been started on medications to help. There was a short time where driving to a doctor’s office would throw me into a full-blown panic attack, but since starting on medications, I can confidently walk in with a smile and steady hands. Better living through chemistry, I suppose!

To all of the patients, the families, and the friends who deal with this disease: It can be ugly, and it can be scary, but in the end please do not give up hope. Remission and recovery are possible. Living a normal life is possible.

Always keep fighting, and don’t ever give up. You are not defined by a disease.

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

Become an Advocate by sharing your story. It may result in an 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  

In Sickness and in Health, A Wife’s Journey as an AE Caregiver

August, 21-2019 | Roberta Borchardt

It was the day after Labor Day, Tuesday, September 6, 2018.  I was sitting in the emergency room At El Camino Hospital in Mountain View, CA, watching the chaos that was now surrounding my husband who is lying down on the bed just a few feet away from me.  I knew something was very wrong with my husband, but now reality is setting in that things are about to change forever.

Let’s rewind for just moment to three weeks before September 6th when my husband had gone to see his regular doctor due to some abnormal body and nerve pains.  His doctor thought the body pains might be fibromyalgia since they were lasting so long, but I really wasn’t buying that.   It was certainly strange, but nothing to panic about so we made an appointment with a neurologist for a nerve test a few weeks out which just happened to be on September 6th.

It wasn’t until September 1st, the Thursday before Labor Day, that the body aches and pains stopped, and things started to shift.    He came home early from work on Thursday.  He was sweating and pale.  I asked him why he was home early. He said his boss sent him home because he wasn’t completing thoughts during their conversations.  Weird I thought, and he looked awful, so I told him to go take a nap.  Having a high-level corporate job with a growing company can be overwhelming at times and it has caused him to get sick in the past so perhaps it was just stress induced.   Friday was a vacation day and he seemed OK, but then Friday night we went out to dinner. When he looked at me from across the table it was like he was looking through me.  The only way I can describe it is that he looked like a serial killer.  I realize that’s a horrible thing to say but that was truly what he looked like.  It was downright spooky.

Then that evening he started to sit straight up on the edge of our couch (which he never does) and that night and through the weekend he was sleeping really stiff in bed, like a mummy. Then the cognitive issues set in on Saturday and he started to decline rapidly.  By Sunday he couldn’t complete a sentence. He would start to speak, and the last words of a sentence would just not be there.

Then there was the dog incident. Every time out dog goes potty outside she asks for a treat by sitting and staring at us until she gets one.  Standard behavior she has done just about every night of her life.  So, when she was staring at him because she wanted a treat for using her pee pad outside, he turned to me with a totally confused look and said “why is the dog staring at me?”.  Now I’m starting to freak out a bit.

By Sunday he became really lethargic, could barely start a sentence no less complete one, lost interest in just about everything, and couldn’t recognize objects I would show him. We already had an appointment with a neurologist on Tuesday, so I thought that was our best chance of getting the right care rather than going to the emergency room on Sunday.  Since Monday was a holiday, I didn’t think the right doctors would be there, so I decided to wait.  By Tuesday morning he could not cognitively function at all.  I was guiding him to the car to get him to the doctor.

Once we arrived, I told the technician who was supposed to start the nerve test to get the neurologist in the room asap because something was very, very wrong with him.  She tried to tell me I didn’t have an appointment for that.  Clearly, she didn’t know who she was dealing with.  I told her to go get the doctor NOW!  Then a nurse came in and tried to tell me the same thing.  I lost it.  I started to yell and cry and demanded she get the neurologist immediately.  Once the neurologist came in it took her less a minute of questions and observation before she said “get to the emergency room right now!”

Unbeknownst to us at the time, she happened to study AE as an undergraduate at UCSF and knew the symptoms.  She also told us exactly who to ask for at the ER and the hospital was less than 10 minutes away.

Almost immediately upon our arrive we were whisked into a room and were being seen by their neurosurgeon who specialized in AE.  She explained to me what she thought was going on.  Autoimmune what????  She told me what AE was and all the treatment and tests to follow.

Due to the quick onset she was worried from the get-go. From there it was a testing frenzy. MRI, Spinal Tap with samples going to Stanford and the Mayo Clinic, CT Scan and tons of blood work. The urgency was obvious.

As I sat their dumbfounded all I could think about was 1) how do I explain this to his family, and 2) is my husband going to be a vegetable?  That probably sounds like a horrible thing for a wife to say but that was where my head was at.  He was the strong one, always totally sure of himself, always knowing what he is doing and where he was going in life.  It was just infused into his personality to make sure our future was solid.  Seeing him so helpless on that hospital table I couldn’t help but think if everything we dreamed about for the future would now be gone or in serious question.

You might be saying to yourself at this point “geez she was awfully selfish.  It’s all about me, me, me me!”  You would be correct.  I was being completely selfish and needed to grow up.It was time to put on my big girl pants.   I now had someone who needed to rely on me now, so I better step up.  I can count on one hand how many times I had been in a hospital, and now I was about to spend 10 days there.  It was 8 am to 8pm, taking it day by day, hoping for the best but getting ready to deal with the worst.

The MRI was negative, but the initial spinal tap results showed an elevated white blood cell count.  She wanted to start treatment immediately but needed the results from Stanford to make sure it wasn’t AE with a viral or bacterial infection.  The standard protocol, which is IV steroids, cannot be used on a viral or bacterial infection.  She called Stanford and bugged them for the results (they are only about 20 miles away) and it was luckily neither of those.

Due to her extensive knowledge of AE she determined from the symptoms and elevated white blood cell count that it was Autoimmune Encephalitis.  His antibodies were also sent to the Mayo Clinic to identify what type of antibodies he had but she was not going to wait 10 days for those results to start treatment.  Whatever antibody it was the initial treatment was the same, so she got started immediately.

This was the best of all circumstances one could ask for.  It’s why it’s so important for people to see an AE neurosurgeon as quickly as possible so they can get the right diagnosis and treatment.  Any additional time spent with a wrong diagnosis can lead to so many more years of recovery due to more extensive brain injury occurring.

So, we started with the 5 days of IV steroids and then 3 days of IVIG treatments to follow. All in the hospital, thank god, since I don’t think I could have taken him home in the state he was in.  He was really scared, and I was doing my best keep him in good spirits and to keep myself together at the same time.

During all of this I am getting phone calls and texts from friends, family and coworkers asking how he was and what the hell is autoimmune encephalitis.  Fair questions, since I had certainly not heard of it before this happened.   As he started to get a little better, he didn’t want to talk to anyone or have any calls because he couldn’t form complete sentences yet and his voice was very weak.  He also didn’t want any company which was difficult since everyone wanted to see him.

Then there were the memory issues.  He had a really hard time with names and retaining them in the beginning.   From day 1 to day 4 he only could verbally remember my name and, of all people, his boss.  Nobody else.   He recognized some people but could not say their names.   I remember sitting in bed with him and watching a Tom Cruise movie.  He recognized Tom Cruise as someone he should know but did not know his name.

He couldn’t understand how to use his cell phone until day 6 or 7 and then I had to show him how to use it.  His reading, motor skills, and mathematical skills didn’t seem to be too affected.  (I know, totally weird.  Don’t try to figure it out or your own brain might explode. 🙂

He improved dramatically every day that went by.  The zombie staring finally went away about day 6 in the hospital.  He could talk in full sentences, although his voice was still hoarse and not very loud, and he started remembering most routine things in his life.

The tests came back from Mayo and his antibodies were not identified as any of the ones known at this time. (They were actually donated to UCSF in hopes of identification someday.)   After 10 days in the hospital we went home.

The first few weeks were interesting. Some things came right back, others, not so much.  His long-term memory for the last 10-15 years seems to be gone.  That’s been the hardest thing since we have only been married 12 years.  Things come back kinda like dreams but only if I show him pictures or tell him stories.  I showed him our wedding video and he doesn’t have much recall which was a bit disappointing, but understandable.

Once home, I asked him to start a daily journal to keep track of his progress.  He showed me his first entry.  It was in cursive.  He hasn’t written in cursive since he was a kid.   I asked him why he was writing like that and his response was “you have to write a journal in cursive”.  Huh?   He was dead serious when he said it so I just went with it.  I couldn’t read the thing since the writing was terrible, but eventually it got better. It took him quite some time to get back to his normal printing which is actually quite neat.

Getting his signature back was also quite a struggle.  This was a weird one.  He couldn’t sign checks because he couldn’t get his signature right.  He was so frustrated, and it would stress him out so much that he would shake when he tried to do it.  I felt horrible for him.  I signed all the checks until he got comfortable again signing things.   I had him practice on some paper where there was no stress to get it right.  He couldn’t understand why it was happening and I had no answer for him except that he had to give it time. It eventually came back but it did take a few months.    There seemed to be no rhyme or reason as to why some things came back quickly while others took months.  That’s when I realized that the brain is not something we were ever going to figure out and we just had to go with the flow.

It was the higher brain functions that took the longest to come back. Work was the last to be addressed. He initially took a three month leave of absence in hopes of returning in November. His boss and team have been fantastic through this. Super supportive. They all truly care about him and had made it perfectly clear that his job was in no jeopardy. He was to get well and have no worries about work. Such a great group of people we really couldn’t have asked for anything better.

For some reason a lot of his work knowledge from his current company came back which is within the last 5 years.  However, conversations and presentations he had given were gone from his memory.  Any get togethers he had, whether it be for work or otherwise were also forgotten.  But information and learned materials seemed to be there.  I think most of it was actually relearning a lot of his work skills which is really amazing considering the high brain function required for that.  After about a month at home, I had him slowly go through old emails he had sent to people so he had a feel for what he used to do and how he did it.  Only a few minutes a day at first and then we built up from there.  In the beginning he got tired very easily, so I had to force him to take lots of naps. I had to watch him very carefully since I just wasn’t sure at first what he was going to be capable of doing without putting undo pressure on his brain.

I mentioned above we had to go with the flow when it came to this entire process.  My husband is not a “go with the flow” kinda guy.  He is someone who wants to know how to get from point A to point B.  He wants a schedule and to know what he needs to do to accomplish the goal.  I had to explain to him that the brain does not work that way.  There is no exact path.  It will tell you when and how your recovery will go.  If you push it you will only go backwards.  Wow, did that piss him off.  So frustrating for him.  The man who always has a plan couldn’t really have one.

Then there are the emotional issues.  This one really threw me for a loop and has been the hardest to adjust to.   My husband is an introvert.  Quiet, stable, hard to read, and doesn’t show a lot of emotion.  Tends to keep things inside, which is probably why he does so well in corporate America.  Very few people don’t like him because he is so even tempered.   So it was a shock when we got home and there was a significant change in his personality, particularly when it came to his emotions.

First there were the panic attacks.  I have never seen him have one, ever.  The first one was when he couldn’t remember his password to Quicken, which had all of our financial data on it.  He lost his freakin’ mind!!  I hardly knew what to do because it was such a strange behavior coming from him.  So, after the initial 5 seconds of total shock, I realized I had to be the voice of reason which, if you knew me, would be the funniest thing in the world.  HE was always MY voice of reason.

It was seriously like walking someone off a ledge.  I had to sit him down and tell him it wasn’t the end of the world and that we would call customer support and figure out how to get into his files.  I also told him to take deep slow breaths.  In and out.  In and out.  This had worked for me in the past so thought I would give it a try.  Sure enough it helped.  Thank goodness because I’m not sure what I would have done next.  There would be more of those meltdowns to come and I got better and better at handing them.  Talk about role reversal?  Wow.  I was the meltdown queen!  Not anymore.  I’ve had to keep those big girl pants on even today because we are in no way at the end of this battle.

Then there was the crying.  When we first got home he cried at every little slightly sad thing.  I was totally confused.  He has cried maybe twice since we had been married, but about 30 times in the first two weeks we were home.  It took pretty much nothing to trigger him and he was not even sure why he did it most of the time.   He always cried when something sad was, say, on tv, but it was not sad enough to invoke tears, normally.  We kinda turned it into a joke. Every time he cried I laughed and asked why he is crying.  He would say he didn’t know and then we would both start cracking up. Hey, if you can’t laugh how else are you going to heal, right?  He doesn’t do it much anymore, but we went through a lot of tissues those first few weeks.

Some of the personality changes have been a good thing.   His emotions are now much more on the outside than the inside.  He may cry more but he laughs more too which is great.  Just the other night we laughed at something so stupid, but we laughed so hard we were in tears.  We never did that before.   We also talk a lot more.  You really must.  Once you go through something like this you either get closer or it tears you apart.  The former is definitely true for us.

As a caregiver, this whole experience has taken a big emotional toll. I’m dealing with someone I know, but now need to get to know all over again. I sometimes find myself standing in the middle of a room, thinking how much things have changed, yet little by little realizing we have come to a new sense a normalcy.

In the hospital things were easier.  I wasn’t responsible for this person getting by day to day.  I could leave the room to have a good cry, but once home that wasn’t an option.    Life as I knew it would never be the same.  AE patients feel that way too but it’s different.

From a treatment perspective we were very lucky to have gotten the care we did in the time-frame that we did.  However, he is still in recovery, not “cured”, and every day I see the person who used to be confident about everything and never question himself, to someone who is constantly questioning everything.

I’m on edge a lot watching for things to go wrong.  You can’t help doing that as a loved one.  You dissect every little thing and wonder constantly if this is the way things will be for the rest of our lives.

He is back to work full time now. Although the doctor gave us approval to have him start back to work in January, I was the one who had to decide how it would be done since I knew the stress level and high level brain function required to do what he does.  I had to watch him start back slowly and hold him back when he wanted to do more.  Not fun.

He started for a few hours and then worked his way up to the full 8 hour day.  However, he comes home every day at 12:30pm, takes a nap, and then works the rest of the day from home.  I don’t think he will ever go back to work like he was before.  That required no less than a 50 hour work week which is normal to sustain a job at his level.

He’s already talking about having to give up the position he has now, which he worked so very hard to achieve, and take a different job within his company that requires less of a workload.    He has already had to decrease his workload significantly.   It’s a huge ego hit even though the company is doing their best to help him by making changes and reducing his team.

Then there are the financial concerns.  He wants to retire earlier than he had planned before just in case something goes awry.  We’ve met with our financial adviser several times just to work out “worst case” scenarios” because with this disease you just never know.

So here I am, not only wondering what our future holds, but having to tell him everything will be OK when I am not sure that it is.  I try not to show him how stressed I am because that just makes him more stressed and gets us nowhere.

It’s hard for people to understand what I am going through.  I don’t want to worry his parents, so I tell them just as much as I think they need to know.  My friends, when I tell them about what happened to Gary, say “Holy cow, that must have been terrifying for you!”.  My response; Yea, it was, and still is.

So, the journey continues.  Where it ends, who knows.  But we will take it together and conquer each challenge as it comes.  For all you caregivers out there who want to put your fist through the wall and scream “why me?” I give you the cheesiest line ever with a twist.  When life gives you lemons, make lemonade.  BUT, remember this….you can only make lemonade if you have sugar or it tastes bitter.  Your strength and resilience is the sugar.  Without it, all you have left is a bitter taste in your mouth.  So, hang in there and make some sweet lemonade. ?  You’re stronger than you think.

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

Attending the Day of Strength Autoimmune Encephalitis Conference at Texas Children’s Hospital

August-7-2019 | Sheila Sims

Hello all!

My daughter and I attended the July 27th ‘Day of Strength’ event at Texas Children’s Hospital.  I wanted to share our experience as I hope others will get the opportunity to attend events like this one in the future as well. We were informed about this convention by my daughter’s Neuroimmunologist (Dr. Rohini) as we had been in her office for my daughter’s first visit with her. She informed us that there would be information from experts attending and speaking on Autoimmune Encephalitis. I was intrigued so I immediately went online and booked our tickets.

A little back story about our personal experience with Anti-Nmda Receptor Encephalitis. It all began on February 7, 2019. My daughter had been feeling “not herself” for a couple of weeks. She informed me she could not think straight, she was confused, eye sight was not right (seeing double) and she was exhausted. I made her an appointment with her primary and she was diagnosed with a UTI.

I figured OK, maybe this is a bad one and after a round of antibiotics, she will feel much better. That was not the case. After a couple of trips to the ER after her appointment, things just started to get worse. I made her a second appointment with her primary, as I knew something was not right. The day of her second appointment is when we would witness the scariest times of our lives. As she was getting ready for her appointment, she started making no sense with her words and had no clue about what we were doing.  She didn’t even know where she was.  Then out of nowhere, she collapsed and started seizing.

This was all so completely out of the ordinary for her as she had been healthy her entire life. She was rushed to the hospital by ambulance as she seized again en-route by ambulance to the hospital. When we arrived, they immediately took her for scans and performed a lumbar puncture. They knew after the lumbar puncture, that she was in fact ill, just had no diagnosis just yet. It would be three weeks in the hospital before the diagnosis of Anti-NMDA autoimmune encephalitis was confirmed. She experienced psychosis, hallucinations, clonus, tonic clonic seizures, periods of comatose, and several other symptoms.

After two months hospitalization, needless to say, this is when I decided I will not stop until we have answers. I would not stop looking for information that could be beneficial to my daughter and I knew there were people out there going through this as well. Thankfully, my sister (Dianna Sims) was helping try to find information when she stumbled upon International Autoimmune Encephalitis Society. I will just say, it was God sent! OK, OK, enough about us and back to the day of strength.

We went to this convention, it was our first time attending something like this. My main goal when going was to get better informed by experts and individuals that have walked this walk. We got there a tad early and I do not regret it. When we got there, we sat at a table alone feeling a little awkward and maybe a little out of place. Things soon lightened up as we started to meet more people. The first two people we met where a mother and her 18-year-old daughter from New York. They were just plain out beautiful people. The daughter, we discovered was also fighting anti-NMDAr AE.  My daughter instantly felt that she was not alone in this fight and that there were, in fact, people that could relate to her. That was a hug to my heart. The people we met and all those who attended, caregivers, parents and patients were all struggling in the same way. All of us were fighting for the same cause, walking the same journey and we felt for the first time that we not alone. This was the first time I experienced that we do not have to fight alone. Being in the company of others who we could talk with who related and understood our situation because it was a shared experience.

Nesrin Shaheen

When the convention started, Dr. Muscal spoke first. He spoke about the history of encephalitis and all the new findings, treatments that are available and the hope of a cure one day. He was intriguing and brilliant. He had information that I was glad to receive as I had not seen some of it before. The next presenter was Nesrin Shaheen. She spoke of her daughters’ journey and how they fought for many years before a correct diagnosis was made. She also spoke of some ancient history around encephalitis and had some awesome slides of possible encephalitis in that ERA. If a mother ever wins “Mother of the Year Award”, she would be that mother! She fought, she involved herself and, in the end, her daughter is succeeding well! She is my new role model (next to God, of course! Lol)

Dr. Saxena

Next, Dr. Saxena (Psychiatrist) spoke. She discussed the psychiatric symptoms of Encephalitis. She went over a list of medications to help as well. Not many Psychiatrists are well informed about symptoms and correct psychiatric supportive medications for autoimmune encephalitis but she was! She made perfect sense. The last session we were able to stay for was the “self-care” session. In this session, patients as well as care givers were given a breathing exercise to practice. They also went over a check list that was provided to everyone in the room of different activities that they may be willing to do as to take a minute or two of the day to self-care. Though the patient is the focus, caregivers must also maintain a level of self-care. I think that this was very important as many of us have lost ourselves as caregivers and have forgotten ourselves and what some of our basic needs may be.  This was a real eye opener.

I have to say, I was a little skeptical and nervous going into this whole convention thing but, it really opened my eyes to all the treatments, the people going through the same thing and the possibilities that patients actually have! This is something I absolutely do not regret and look forward to attending many more as we are able.

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Attending the Neurology and Psychiatry London Conference

July 24 | Dr. Daria Muir, IAES Medical Liaison,  and (stubborn) AE survivor

The long-awaited day has arrived – Finally. It’s Monday morning, very early in the morning, and I have a flight to catch to take me to London to attend the Converging Themes in Neurology and Psychiatry conference to be held at the Royal Society of Medicine in London.  I’ve been looking forward to attending and representing IAES for so months.  I am excited.

The aim of this meeting is to review the current clinical and basic research understanding of the diagnosis and management of a range of disorders, including Autoimmune Encephalitis, Epilepsy and Dementia, that are at the interface between neurology and psychiatry.

The first day was going to be about Autoimmune Encephalitis (mainly focus on anti- NMDAr and anti-LGI1 antibodies), seen from the perspective of two neurologists (Prof. Sarosh Irani and Prof. Christopher Butler), a psychiatrist (Prof. Belinda Lennox) and an immunologist (Prof. David Wraith) and followed by some in-depths of the neuroscience of space and time, wonderfully focused on the memory process of evolution and dissolution (Prof. Eleanor Maguire), the navigation systems after long-term memory consolidation ( Prof. Hugo Spiers) and the development of hippocampal-dependent memory in humans (Prof. Faraneh Vargha-Khadem).

Ever since I got AE I started to feel uncomfortable in crowded and busy places. Too much noise and lots of conversations at the same time makes me lose focus.  Brain-fog takes over and I am lost; (this literally happened at the end of the first day, when I took the wrong bus and ended up almost outside London in the middle of the night).

But arriving at the conference and seeing the presenters and the attendants, most of them eminent names in neurology and psychiatry in the U.K., leading doctors in the field who provide care for autoimmune encephalitis patients, gave me strength to gather all my energy to attend and get the most value I could from the experience!

I’ll share more in a follow up blog with a more detailed story, with slides and answers to questions.  (The AE session was the most debated one!), but now that I have returned home, I wanted to give you the “fresh flavors”, in terms of objectives that were set and reached by the speakers and take home messages:

  • NMDAR-dysfunction is the hallmark of NMDAR- antibody encephalitis and hence NMDAR antibodies
  • There are several lines of evidence (clinical evidence, immunological/epitope data, electrophysiological modeling and PET imaging)
  • Down regulation (a decrease in the number of target cells in the brain caused by NMDAR) of NMDAR is key and sufficient for disease!
  • LGI1 AE has highly distinctive clinical phenotypes
  • The disease neurobiology and the underlying immunology remain poorly understood
  • mAbs (monoclonal antibodies) can offer novel insights in terms of tools and therapies and immunology
  • Autoimmune limbic encephalitis leads to acute cognitive and behavioral disruption
  • There are persistent deficits in anterograde and remote memory after treatment
  • Hippocampal atrophy is associated with network-wide structural and functional changes
  • These changes explain memory deficits better than hippocampal volumes
  • Novel disorder of pathological tearfulness in AE requires further study
  • Limbic encephalitis – a “neurological” neuropsychiatric disorder
  • There is an overlap in clinical phenotype between encephalitis and schizophrenia
  • 5-9% of patients with psychoses have antibodies against a neuronal cell surface target
  • Patients with psychoses and antibodies have an abrupt onset to illness, but do not have a distinct clinical phenotype
  • Neurology and psychiatry need to combine forces!
  • The future in immunotherapy: proteins can be replaced with apitopes, representing T cell epitopes, for effective desensitization of cells causing allergy, autoimmunity and other unwanted immune responses. Apitope therapy is already proven in a range of immune pathology. Apitope immunotherapy is a targeted approach treating the underlying disease pathology by selectively reinstating immune tolerance rather than global immune suppression. (Apitope means antigen targeting epitope).

I can’t help but reinstate one of the key messages about the management of diagnosis and treatment of Autoimmune Encephalitis:

-Neurology and psychiatry need to combine forces!

A big “Thank you” and “Congratulations” to the amazing speakers and great organizers!

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Under 5 Years old with Autoimmune Encephalitis~ A Homecoming Survival Guide

July-10-2019 | Kayla Demay

After watching your child endure Autoimmune Encephalitis in the hospital, anyone would be grateful when the end is in sight and they’re bringing their little one home. It seems like the end of a chapter you’d never want to read again but really, it’s just the prologue to a new novel; Life After.

Aside from the doctor’s notes, the medications, occupational, speech and physical therapist visits, nurse visits and appointments; just living, just home life in general has changed. You are grieving the loss of your child’s personality and they are struggling tooth and nail to regain what they’ve lost. There’s lots of coping strategies I’ve found along this journey with my child. I’d like to share them because it was excruciating to figure out, and I’d love to spare you and your children more pain.

  • They’re seeing their world through new eyes, and it’s very scary and overwhelming. Limit outside company and time spent away from home for the first couple weeks.
  • Make a very repetitive and simple schedule through those first weeks and stick to it religiously. They may have trouble understanding the passage of time and what has/hasn’t happened. When everything happens at the same time every day, it creates a rhythm that will help them through this. Explain what has happened and what will happen at what times over and over when they ask.
  • Use blankets to cover the windows in their bedroom. Even kids that were originally afraid of the dark can find the light to be too much, and they find comfort in the dark cocooning of their room. Darkness naturally helps regulate their sleep too. Let them surround themselves with things they like, things that make them feel safe. Weighted blankets are very good for feeling safe as well.
  • Pay attention to the signs of your child’s fatigue and say whatever needs to be said to get them to lay down the moment you see it. Structure the whole day around those naps, because they are SO important. If they try to power through it, they may have a major meltdown, exhaust themselves in a fit of irrational rage or overwhelming sadness, or physically hurt themselves and that is hard on them. Make their teachers aware of that particular need if they’re going back to school, get an IEP or a note from the neurologist saying so if need be. They NEED their rest right when they need it or else, they’re gonna have a bad time.
  • Sometimes, no matter what you do, they’re going to go into an irrational rage and they’re gonna have a bad time. Did you blanket the windows in their room? Create a space where they can let go and scream and wail and throw things and hit things. You can worry about replacing your door jambs later, right now they have no control and neither do you. Just hang on and love them through it the best you can, sometimes that’s ALL you can do. That’s nobody’s fault.
  • Get yourself and your other children therapy. Your AE Warrior needs SO MUCH from you, and you may find yourself swallowed in grief when parents who don’t have to shell out 14 medications a day or live in fear try to invite you to things you know you shouldn’t go to yet or constantly ask how they’re doing, expecting to hear some equivalent of “Oh, just fine!” But it’s not fine. It takes time. There should be no shame or hesitation in admitting that you need some time off or some meds or some help. These conditions change everything for everyone in the family.

My heart grieves for all of you and I hope what I’ve found through my experiences with this darkness helps you light the way!

Hug those little warriors for me.

 

 

 

 

 

 

 

 

 

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My Daughter Has Autoimmune Encephalitis, And Here’s My Regret

June 26-2019 | Cara Arnold

My daughter was born a firecracker. Seven pounds of sugar and spice, with these big, beautiful eyes through which we’d both take in the world. She was brave. Or maybe just innocent. But nothing scared her. And the two sets of stitches she had by her first birthday was proof of that. She loved without bounds, and in return everyone loved her.

She was my first. And I celebrated her firsts.

Her first word, her first tooth and her first steps. Her first birthday, her first gymnastics class and her first school day. Her first awards ceremony, t-ball game and cheer competition. And so, the list goes on.

These firsts were characterized by cheers, often celebrated by many and marked by pictures. Pictures of the moments already frozen in my mind.

These are the firsts a parent looks forward to. The firsts I thought we’d share a lifetime of. The firsts that, unfortunately, chronic illness robbed me of.

As vividly as I remember these “firsts,” I remember a last too.

Her last “good day.”

And I wish with everything I have I’d stopped to enjoy it more. Or, at all.

It had been a long day. And she had taken an extra-long bath, and “forgotten” homework until the last minute, and then chose the longest bedtime story. And we were tired. Or, I was tired. And I rushed through the story. Never looking up at her taking it in. Expecting many more. And I skipped words, and even pages where I thought she wouldn’t notice. And every day since I’ve wished for those words back. Because she awoke in a different world.

The world of autoimmune encephalitis.

A world where her body attacked her brain. Where antibodies meant to fight infection instead attacked her nervous system. A world where her brain was described by doctors as “on fire.” And in this world, she was paralyzed. A girl, my girl, who had been throwing back handsprings the day before now couldn’t move. Gymnastics and softball were replaced by hospital stays and physical therapy and her carefree laughter by shrieks of pain and terror. The fight for homework to be completed or for her to “just go to bed” that had made me bonkers only hours before paled in comparison to this fight – one for her life.

Literally, overnight our world changed.

And again, there were firsts.

Her first seizure, her first hallucination and her first ambulance ride.
Her first EEG, hospital stay, and infusion.
Her first PICC line, feeding tube and port.
Her first wheelchair and walker.

These firsts are also frozen in my mind. They lacked fanfare, for obvious reasons. But the silence that accompanied them meant they lacked support. Support for me, necessary to support her.

And these firsts, cruel though they were, had a purpose. They prepared me for other firsts – like the first time I prayed she’d make it to the hospital or reckoned with the idea from there she may never go home.

And those firsts are the most isolating part of illness.
The part nobody shares.
Because they’re huge. And etched in your mind. But not celebratory.

Gracie is a fighter. I’m quick to say that.
She has good and bad days, and I can voice that.
But, whether I’m protecting her or me; the depth of the bad days has stayed a quieter battle.

Things have stabilized for my girl. She had her first round of chemo. And is now home from the hospital more days than not.

And again, we’re experiencing new firsts.

Her first IEP. Her first partial day of school. And her first time on an “all inclusive” sports league. And I celebrated these moments. Because they were big. They were moments I didn’t know would ever come. But I celebrated them alone – because they aren’t the kind of firsts you can explain.

And the hard part in writing this is I know if they knew I needed them, and if they knew how, my friends would have been by my side. But illness isn’t like that. Nor is “special needs” parenting. There’s no “what to expect when you’re expecting” sort of guide. Because it isn’t what anyone is expecting.

There were firsts I never thought of.
And would never want another mama to.
But if I see one experiencing a medical crisis now, I do speak up.
Even if it’s just to say, I’m here,
Because I know illness is scary.
And never meant to be navigated alone.

 

Parenthood, even under normal circumstances takes a village.
A village on the good days – and the bad.
But parenthood with illness REALLY calls for a village.
A village of support, shared resources and shoulders to cry on.

And to the mamas who need a village, reach out.
Because other mamas do too.
I promise.

We’re here… waiting.

 

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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.

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