AE Awareness Month 2023: Brain on Fire

by Alanna | Feb 7, 2023 | Special Series

February 8, 2023 | By Jeri Gore, IAES Blog Division Head

As we head into February 2023 and Autoimmune Encephalitis Awareness month 2023, we, the staff at the International Autoimmune Encephalitis Society (IAES), are super excited about how far awareness has come for Autoimmune Encephalitis. There is ever increasing treatment options for AE, ongoing research and clinical trials, increased membership (which speaks to awareness), ongoing recognition, and increased knowledge of more and more types of AE. The staff at IAES are busy as bees with all that is happening in the world of AE and supporting those diagnosed, their families, friends, and medical staff! We are excited and our brains are on fire with what AE Awareness month will bring and offer this year and the positive direction we are headed!

The IAES sponsors AE Awareness month and we have watched in wonder as it has blossomed and grown over the years into a month full of incredible speakers, information, support, and recognition!

The theme for AE Awareness month 2023 is ‘Brain on Fire’. In 2012 Susannah Cahalan released a book based on her AE journey with this name. A film based on this, her memoir, was soon to follow in 2016. Ms. Cahalan has been gracious enough to allow us to use this title for AE Awareness month this year. We are grateful and feel it is a very apt description. AE Awareness on all levels is moving in a positive direction as if on fire. This is terrific news for all AE Warriors, caregivers, medical and support staff, and all of those who will be diagnosed with this disease in the months and years to come.

As we all know, AE can be a difficult and devastating diagnosis. We all have stories to tell about our diagnostic journeys and recoveries. For most, we are fond of saying the recovery to our new normal is in no way a sprint and linear road but rather an arduous bumpy marathon. Like all journeys, there are ups, downs, and everything in between to talk about. At IAES we hear about and help to support folks at every level of their AE disease journey. We hear the good, bad, and ugly. And we hear funny, positive, and uplifting stories as well.

This year, to highlight the positive direction AE awareness is going we would like to talk about the uplifting, funny, incredible, and interesting gifts AE has given (or caused) and some of the very funny things we all have done on our paths towards recovery. Although AE is a devastating diagnosis, there is a gentle and humorous side that is sometimes left unspoken.

For me, personally, the gifts AE has given me may not be as concrete as for others. I have slowed down and appreciate ‘the small’ much more than I used to in my busy forward-looking life. I was always in a rush. I have said many times before that I always and I mean always tried to do way too much and quite possibly did not take the time to do things as well and with as much purpose as I do now. I appreciate those around me much more and I love. I love each day I am given. I love those around me. During my recovery, there were some strange and very funny things that happened. Chalk it up to a healing brain but during the thickest part of treatment and when medication levels were at their peak, sometimes my brain worked in very interesting, strange, and funny ways. One night I woke up, sat up in bed, and said hello and goodbye to my husband in Polish. I have not heard any Polish spoken since long before my grandmother passed in 1969 and I could not even begin to speak it in any way now. Another night I woke up and could recite every address we had ever lived at as well as all my relative’s addresses’ dating back 50 years plus. I cannot do that now. It was crazy and very funny!

There are AE Warriors whose diagnosis has awakened a super creative part of their brain. There is an IAES member who has become an incredible portrait artist. This member had no formal training and prior to the diagnosis had not drawn a thing in their life and now could make a nice tidy living drawing portraits for folks. Another member can now write beautiful and publishable poetry. There is another member whose photographic skills were unknown before AE and now are worthy of magazine covers. This list goes on and on!

All AE warriors, our families, and caregivers could probably write a book on some of the funny things we have done during our recovery journeys. Some may view some of these instances as sad or negative, but you must see the humorous along this marathon of a recovery road for it is in how we handle the difficulties that we are defined. And, simply, sometimes, you just have got to laugh!

One member recalls her son with AE in an acute rehab unit wishing to have French dressing topped with a healthy dash of iced tea on his salads because it tasted amazing. Another recalls stopping at toll booths and being amazed at how kind-hearted folks were giving the tooth booth attendant money just because! Another member recalls telling her family that a school bus driver was coming to take her home and she had never even ridden in a school bus. Most of us while in recovery have short- or long-term memory issues. The brain is amazing but a slow organ to heal. We get very creative in our word choices, and they are sometimes hilarious!! For us, an iron could be called a ‘shirt flattener’. We may call a doorway a ‘get through’. A ‘get louder’ is a remote control. We sometimes put sticky notes up in various colors to help remind us of this, that, and the other thing and cannot remember the color coding of the sticky notes. A clothes dryer could be called a clothes oven. Our brains, with AE, are on fire and as you can see, very creative at times!

As AE Awareness month 2023 progresses, we hope you find wonderful information from the speakers presenting the newest in AE research and treatment. We hope you find support and inspiration whether you be an AE warrior, a caregiver, a loved one, a friend, or anyone wishing to further their knowledge in this exploding field of research and medicine. We hope you see the positive and humorous for although AE is a difficult diagnosis, there is hope and a future for those of us whose brains are on fire!

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

On June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

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.

For those 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.

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

Caregiver Honorable Mention

by Alanna | Nov 8, 2022 | Special Series

November 8, 2022 | By Mari Davis

Introduction from the IAES Blog Team:

.For all Autoimmune Encephalitis warriors, it is our caregivers, friends, and loved ones we rely on every single day in our AE journey. We rely on these amazing people for everything from giving words of encouragement, to a ride to doctor’s appointments, to help us relearn how to walk and talk, and simply be there by our side. We are honored and proud to add another one of these amazing sentinels to our list of Honorable Caregivers.

—–

I, Mari Davis, would love to nominate my husband, Geoff Davis.

Geoff has been my rock throughout the ups, downs and all the shenanigans called Autoimmune Encephalitis. I was at work when suddenly I had seizures. No warning, no nothing. I was admitted to the intensive care unit and was intubated. Geoff was there. He had no idea what was happening, but he never wavered and was there. He had to call our college-age children and my parents to let them know that I was sick. I was sick, and he had to tell them he had no idea what was happening. He was at my side each night during my admission. He has been my cheerleader and a driving force in my efforts to become as functional as possible. In the last 5 years he has cried with me, laughed with me, and danced with me.

When it became apparent that I wouldn’t be able to return to a job I loved he cried with me. He has laughed with me while I’ve creatively tried to find elusive words. He has danced with me each morning before day rehab just to bring a smile to my face. Even when I know he was nervous about how I would do, he never let me know and he was there.

When I drove to Houston with our daughter and flew back on my own, I know he was scared, but he never let me know. Geoff simply offered support and was there. I know with Geoff, I can ask any question, no matter how crazy and he will answer it truthfully, even if the truth is difficult. He will be there. He has the patience of a saint. At times I have needed as much saintliness as possible. He had no idea how I would do long-term. He had no idea if the person I was before would be that person going forward. He was just glad I was here. And he was there.

I would also like to nominate his mother Rubye Neely for raising such a great man. Thank you, Rubye, for raising Geoff to be the person he is and the person that I know will always be there.

Mari Davis, RN, ACM

Support Services Coordinator

International Autoimmune Encephalitis Society

Click here or the image below to subscribe to our mailing list :

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

On June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

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.

For those 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.

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

Points of Light Award: A beacon of light, love and hope for all of us!

by Alanna | Aug 10, 2022 | Special Series

August 10, 2022

Our very own International Autoimmune Encephalitis Society President and founder, Tabitha Orth, has been honored with the Points of Light award! Tabitha & IAES would like to thank Points of Light for this honor. It is our fondest hope that all those suffering from Autoimmune Encephalitis, their caregivers, families, and friends have a less traumatic AE journey through the services IAES provides.

President George H.W. Bush, founder of Points of Light, said “The solution to each problem that confronts us begins with an individual who steps forward and who says, ‘I can help.’” President Bush founded the award in 1990 and formally recognized more than 1,000 volunteers as “points of light” during his administration.

President Bush saw the challenges facing the world as far-reaching and complex, and the solutions often felt out of reach. To tackle society’s greatest challenges and build a better future, he felt we must engage a wide range of people to make a positive difference in the world.

The Daily Points of Light Award honors individuals who change the world. Millions of people act on their power to do good every day, using their hearts, hands, and minds to help strengthen communities and solve persistent problems. On June 16th, Tabitha Orth, President, and Founder of International Autoimmune Encephalitis Society officially became the 7,315th “point of light”.

Click on the image below to subscribe to our mailing list:

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

On June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

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 patients 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 support research, 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. For those interested in autoimmune encephalitis 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.

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

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

Independence Day!

by Alanna | Jun 28, 2022 | Special Series

June 29, 2022 | By Jeri Gore

If you have Autoimmune Encephalitis or are a loved one or caregiver of someone with AE, you know dependance. The AE Warrior is dependent. We are dependent on many things be it friend’s and family’s ability to take us to doctor’s appointments, rehab, food stores or for a simple ride around the countryside. We are dependent on canes and walkers, computers, and sign language for communication. We can be dependent on stair or wheelchair lifts. We are dependent on medical teams to understand AE and suggest best treatment options. We are dependent on our AE family as a community to get us thru a particularly bad day or week or month. We are dependent on the minds and hearts of others to help, accept, understand, and love us.

If you live in the United States, you know July 4^th, every year, is a national holiday. It is Independence Day. It is a day much celebrated with family or friends, with fireworks and cooking out. It is a day of fun and laughter and overall joyful celebration.

If you are an AE Warrior, you know the need and desire for independence. Our dependence on the many things we need to survive AE may not have been on our mental radar before AE took over our lives in one form or another. For an AE Warrior, independence may mean many things. It may mean not needing someone’s help to turn on the lights or start your computer. It may mean no longer requiring a cane to be able to walk. It may mean no longer needing one infusion or another. For me, independence was the ability to drive again. That day is forever seared into my brain. I felt like driving down some country road, windows wide open, sun on my face and singing at the top of my lungs. It also came when I was once again able to concentrate enough to be able to read and understand a book. I felt like I had conquered a giant mountain!! I felt independence and it felt good, really good! I wanted to shout it from a mountain top!

In the spirit of celebration, I suggest we honor our AE independences big and small. We may or may not celebrate with cook outs and fireworks but maybe a little ‘happy’ dance in the kitchen or phone call to a loved one. May we learn to commemorate those small and large events that mark progress in our AE journey. This may not be easy some days but maybe, just maybe if we celebrate these small milestones of progress, it will help propel us onward on those other days when forward progress seems slow or nonexistent.

Happy AE Independence Day to all of you AE Warriors, loved ones and caregivers!!

Click on the image below to subscribe to our mailing list:

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

On June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

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 patients 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 support research, 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. For those interested in autoimmune encephalitis 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.

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

Letters to Our Before AE Selves, Part II

by Alanna | Feb 22, 2022 | Special Series

February 22, 2022 | AE Awareness Month Special Series

Introduction from the IAES Blog Team:

Welcome to Part II of the IAES Blog series for AE Awareness month 2022; Letters to Our Before AE Selves. We are privileged to present the following heartfelt letters written by AE patients (AE Warriors) and caregivers to themselves, or the loved one they care for.

The following compilation of letters expresses the thoughts and feelings we would write to our ‘Before Autoimmune Encephalitis’ selves. They express what we would want ourselves to know, or our loved ones to know, if we could have been given a foreshadowing of how our lives would be pivoted on its axis due to autoimmune encephalitis.

Some letters are from our loved ones to us, and some are from us to ourselves. Long or short, happy or sad, all are heartfelt and are sure to lift your spirits. We hope you thoroughly enjoy Part II of this two-part series.

~

The first letter we share is from IAES member and AE Warrior Angie Fitch to herself:

Dear Angie,

You are so blessed! Get out there and walk your dogs more because there may come a day you might not be able to. Enjoy time with your friends, meeting new people and going outside because a day may come that you are barely able to get off the couch and become isolated. Take pride in being able to multitask, even if that only means being able to walk and do something else at the same time. Go for that run because one day you may give anything to be able to do it, so do it!

Don’t take for granted the ability to speak the words you intend to say because one day those words could leave your mind. Talk about and cherish memories because one day they may not exist anymore. Enjoy the sounds of the world around you as one day those very sounds may cause you extreme pain and anxiety.

Don’t ever take for granted driving a car, cooking dinner, swinging a golf club, having a conversation, going to the grocery store, walking, talking, breathing, or sleeping because these things are not a given for everyone. Things come easily for you, and you learn fast. You’re a hard worker, very active, social, and fun. Cherish these qualities as everything can change in a moment and the ‘simple’ things you take for granted today, may be gone tomorrow.

Finally, never lose hope no matter what life throws at you. Make sure to count your blessings every day, even when the world comes crashing down on you. Always count your blessings; because there are so many, and those blessings are what will help you to never lose your strength, hope and happiness. No matter what life takes from you, it can’t take that.

Love, Angie

~

The second letter is from Kimberly Sorin to her grandson Colban Sorin:

Dear Colban,

You came to live with me a confused and sad little boy. Eventually you became vibrant, funny, and always smiling and laughing. Over the years, as you get older, many things will happen that will shape you into the man you’re to become. There may be days when you feel like there’s no reason to smile. There may be lots of tears and anger, moments may be forgotten. These things may come back to you but in a different manner. Don’t lose your sense of self, keep fighting…and know that I will always be right there by your side.

Always, love you to the moon and back,

Grandma

~

The third letter is from IAES member and AE Warrior Ryann Henn to herself:

Dear Ryann,

Things right now are going okay, but there will be answers to questions you had about yourself and the way you have been acting and feeling. You need to know there are so many people out there that care and love you more than you ever will know and expect. Everything will be okay. I know you are scared about the future, but the people that love you are here to guide you. They will never leave your side. You will feel love like you never have before, and it will inspire you to work hard in recovering. Don’t lose touch with yourself and what you are most compassionate about, animals, people, and creativity. And take it easy on yourself, it’s okay to take a nap.

With lots of love, Ryann

~

The fourth letter is from IAES member, IAES Chief-Resilience Officer and AE Warrior Tessa McKenzie to herself:

Self,

First, let me assure you, you’re not crazy. God is with you and you will feel okay again.

You are the 1 in 100,000 in this “boot camp for the soul” called autoimmune encephalitis.

Doctors can’t diagnose you right now and loved ones don’t recognize you, but your brain is inflamed and it’s not your fault.

There is a lot that doesn’t make sense right now. When your soul is weary, and God is nowhere to be found, know he’s still there and keeps his promises. When prescribed medications don’t work, know the right ones will eventually provide respite to your exhausted body.

Your life will go on past this experience – the sleepless 60 days, disorientation, panic, visual impairment, tachycardia, and memory loss…

And one day, you won’t view this as much of a curse as a unique gift to pay forward in empathy for those you feel alone, suffer, and are misunderstood.

Above all, remember, “all things come together for the good of those who love God (Romans 8:28).”

Love,

Me

~

The final letter is from IAES member, AE Warrior and blog editor Jeri Gore to herself:

Dear Jeri,

Wow! Where do I even begin? Sometimes I feel like I want to write you a very long letter and sometimes it is short and sweet. I suppose today it falls somewhere in between.

First of all, Jer, you always like things black and white. You like the lines of life to be clear, precise, and not muddled. Well, Chica, if nothing else, the next few years will show you that this beautiful life you live is anything but black and white and the lines are muddled in a wonderful array of color and emotion. You may think that happenings in your past were tough or trying but, in all actuality, they set you up for what has become the most amazing journey you have taken to date. You will see confusion on the faces of your loved ones, you will feel pain and sadness in their eyes, and you will want with all your heart to take it from them and carry it yourself. You will learn the meaning of love like you have never known it to exist. You will see your life and the lives of others transformed by an illness so new to so many. Above all, Jer, you will know the meaning of the word grateful on many levels. You will be grateful for your past and your present because it has brought you to this place and to these people that have become a family of Warriors like you never knew existed.

Love always, Jeri

Click here or the image below to subscribe to our mailing list:

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 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. For those 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.

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

Letters to Our Before AE Selves

by Alanna | Feb 8, 2022 | Special Series

February 9, 2022 | AE Awareness Month Special Series

Introduction from the IAES Blog Team:

In celebration of AE Awareness Month, we are pleased to bring you a two-part IAES Blog series of letters written by AE patients (AE Warriors) and caregivers.

The following compilation of letters expresses the thoughts and feeling we would write to our ‘Before Autoimmune Encephalitis’ selves. They express what we would want ourselves to know, or our loved ones or caregivers to know, if we could have been given a foreshadowing of how our lives would be pivoted on its axis due to Autoimmune Encephalitis.

Some letters are from our loved ones to us, and some are from us to ourselves. Long or short, happy or sad, all are heartfelt and are sure to lift your spirits. We hope you thoroughly enjoy Part 1 of this two-part series.

~

The first letter is from IAES member & AE Warrior Kerry Jones to himself:

Dear Kerry,

You’re about to begin a journey that you’d rather not take. It will be rough, it will be challenging, and it will change you forever. But count your blessings, you’re going to be one of the lucky ones. Many of your memories will be gone, but that will open the door for new memories. You will reconnect with your estranged son and become a grandfather to his son. And all the bonds of love in your family will be strengthened. But most of all, learn to cherish every moment and take nothing for granted. Love and share your newfound strength with those less fortunate than you.

Love, Kerry

~

The second letter is from IAES President and Founder Tabitha Orth to herself:

You Have Entered: The Twilight Zone

It was December 2013, when I was re-arranging my sock drawer, that I came upon a sealed envelope with the words “Read Me. From Me. February 2022” written on it. The envelop appeared to be crisp and new as if it had just been placed there.

This is strange, I thought. That is my handwriting, but I don’t remember writing this. What the heck is going on? I thought, as I lifted it up with a shaky hand. I looked around the room, as if for answers, and felt like I was in the twilight zone. I could even imagine hearing the music from the TV series. I sat down on the edge of my bed and carefully opened the letter.

Hi. It’s Me.

I know. This is weird. Don’t freak out. I recognize my own writing. Yes. Take a deep breath.

I don’t have much time. Time, now there’s a story. Bottom line, it’s not linear.

I’ve been given a chance to punch through time to leave this for Me in 2013. Look, I need to tell Me something. I’m sorry I must tell Me this, but I need to know it NOW. It will help. At this point in my life, I think I’ve navigated the hardest challenges that life has offered. I’ve had much bigger long-term life challenges than the average person and I think the hardest part is over. I’m really sorry. The hardest part is yet to come.

Now, I know hearing this from future Me is shocking, but I’m going to go through a frightfully horrific period in my life. It can’t be stopped. The wheels are already in motion. I’m sorry. Trust this is real and that it is true. You will know it is true in the not-too-distant future.

What I want you to know is that I get through it. It is now 8 years in the future, and I survived. Not only that. I thrived. My eyes are wide open to what is most important in my life. I’ve learned that I can love deeper, give more of myself, appreciate all the little things I took for granted that each day brought. The garden, the seasons, being kind to strangers, going out of my way to do or say something kind. Appreciating life. Enjoying every moment of life. I came through a very difficult and scary time and overcame adversity. Jim and Matthew are thriving and happy. Life is good. It’s better than good. Hold this knowledge in your heart beginning right now.

Now, put this back under the socks. I will find it again several years from today. I would have forgotten about it when I find it again, but I will remember its message when I recognize what it is. I’ll have some memory problems when I find it again, but I’m great. No worries. I’m ok.

After all these years, I can’t explain this magic. I have continued to be baffled by it. I can only think that miracles happen. Magic is real. Magic is the power of love. Through love anything is possible. That’s all I’ve been able to work out so far. Maybe time will tell more.

~

The third letter is from IAES member & AE Warrior Laura Melcher to herself:

Dear Laura,

Life isn’t easy, you work and look after your kids and do it without help from anyone. Enjoy this life you have now, because after Autoimmune Encephalitis, everything changes. This life is everything you wanted. You and the kids have everything you need. You are fit, healthy and able to provide.

One day you won’t be able to go back to that job you go to every day, and you will miss it SO MUCH.

Everything you took for granted will be hard. How do you pay the bills alone when you are medically unable to work? You can stand for 9 hours a day now, THAT is a blessing when you can’t stand more than 10 minutes. When everything you took for granted is hard, walking, standing, household chores, reading an email, taking a phone call, being a Mum, showering, just existing.

You think life is hard now, NOW you are blessed.

Enjoy it while you can.

Kind regards, Laura

~

The fourth Letter is from IAES member & AE Warrior Celia Fermon to herself:

To my old me,

I want to tell you that sometimes the road in life gets difficult. It can be exhausting. You have learned by now that you have the capacity to go thru all the journeys. You will find that in the worst moments you will always have an angel by your side. Do not be afraid. You will, also, receive a little angel that has four furry paws that will always be watching you and taking care of you. Do not worry for you will learn that in your weakness is your strength.

Love, Celia

~

The Fifth letter is from IAES member and AE Warrior Sharon Bassell to herself:

Dear Sharon,

It’s me! The YOU before AE.

It’s been nearly 7 years since that vile antibody entered your system and gave you AE.

I’ve watched you stumble around in the dark for so many years looking for answers, cures, and hope….and where was l?

I wish, I wish I could have talked to you before it all happened.

I may have been able to save you so many tears, anger, confusion and maybe made acceptance and progress happen sooner!

BUT! Better late than never!

I’m here now, and here is what I wished you’d known before.

* NOBODY could have predicted whether you would have ever been cured.

* NOBODY could ever have predicted how much progress you would have made.

You have an aggressive, angry, strong, resilient antibody – I bet nobody told you

that!

* Your life will never be the same again, or even anything resembling it – I bet

nobody told you that!

* Remember that career in Nursing, that was the very core of your being?

The role that you were born to do.

The thing that you dedicated 44 years of your life.

Well! It’ll ALL be gone in ONE DAY!

The day you were diagnosed with AE!

* You’ll never be able to drive a car again, your clean license of 42 years- another

thing that’ll be gone at a stroke of a pen!

You had the right to know that things were going to get a lot worse before they got better….

You needed to know about neurofatigue, flooding, visual deficits, memory loss

(Both short- and long-term memory).

Loss of certain “Life Skills “……remember how good you were with all things before IT?

Well, not anymore!

I should have told you about the personality changes, mood swings, impulsivity,

the tears, lack of sleep, multitasking difficulties, and problems with processing.

I’m not painting a very pretty picture here I know, but, I believe, knowledge is power!!!

I wish you had even a third of this information before AE got its grip on you!

Your recovery and acceptance would have been so much smoother and quicker.

I know that your medical specialists will focus on many different types of drugs, but they didn’t tell you that you will likely have to reschedule the rest of your life around the administration of these medications, just to keep you from relapsing!

Whilst the right specialist and medication treatment is pivotal, I bet they didn’t tell you that you needed to get into a Brain Injury Rehabilitation Program as soon as possible, did they?

BRAIN INJURY REHABILITATION is what will turn your life around! I wish, I wish I could have told you way back then.

These professionals will focus on YOU as an individual, they’re experts, they’re educators, they’re facilitators, they’re game changers!!!

I also wanted to tell you to link up with a support group like the IAES, you need to make your life easier, and learn from people who’ve “been there “……..

I see you now, and I’m so sorry that your treating doctors didn’t look “outside the box “and suggest adjunct services. Hopefully, this Awareness Project will enlighten many healthcare professionals to have the discussion in the beginning!

I see you know, you’ve done so well, I’m proud of you. You’ve managed without me……but how I wish I could have written this letter to you …. myself “Before AE”

I love you

~

The sixth letter is from IAES member, IAES staff member and mighty AE Warrior Mari Wagner Davis to herself:

Dear Mari,

You don’t know this yet, but you are going to find out in the next 5 years what you are truly made of. There will be times when you want to give up, give in, lay down. There will be times where you will be tested, when you will cry, tell your husband to let you go, but you may already know this, there happens to be a lot of fight and feisty ignorance in you. You will use what you have practiced as a nurse for the last 30 years and complain about every small thing that you find “wrong”. What you will later learn is that a part of it is your brain injury, as well as your anger that this disease has brought and that your injured brain will just not let go of. And no, you are not always wrong, sometimes, they are not practicing up to your standard, you will just have to learn to live with that. What you will also later learn is that life is too short and that there is almost always something to find good in most situations and people. (oh, there may be exceptions) but for the most part you will see the good. You missed seeing that in the past, but you won’t after Autoimmune Encephalitis

You, also, do not yet know that perhaps you learned all those case management skills and ways of finding resources not only to help yourself, but to help others. You will find amazing people at the International Autoimmune Encephalitis Society. You may grieve the loss of your job and for a time a sense of purpose, but they will give you purpose that your life will lack and make the most of your skills. You will end up helping people who need it more than you ever thought someone could need.

You already know this, but you have a great husband, but you will find out what some people never get to learn, that there is a love so deep that someone will take hours of their time to walk you through something that would have taken you 5 minutes in the past. You always knew Geoff was a great man, but you will learn that there is a depth to that strength that you in the past, deep down, you knew was there, but did not see on a day-to-day basis. You will see it now daily. You knew you were glad that day when you first met him, you just did not know how important it would be to you. No, you never would have asked for this disease, who in their right mind would, but you will find that as you improve ( I hate to tell you this but it will take longer than they tell you) you find a strength you did not know you had, a sense of humor that can get you through many things and an ability to learn new ways to do things to help you be more functional. Good God I hope my next letter to myself has more to tell you about how much further you have come. You will just have to wait and see won’t you.

Mari

Click here or the image below to subscribe to our mailing list:

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 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. For those 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.

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

Guilt and Forgiveness

by Alanna | Dec 31, 2021 | Special Series

December 31, 2021 | By Jeri Gore

By definition, guilt is like shame. Or pride or embarrassment. It has been described as a self-conscious emotion, one that involves reflection on oneself and sometimes on others.

This is a subject that is difficult for AE Warriors, caregivers and medical personnel on so many levels. As 2021 turns into 2022, I believe this is worth taking a look at, talking about, facing head-on — and putting to rest — in a kind and loving way. Turning over a new leaf, so to speak, as we head into a joyous, healthy and prosperous 2022.

We all feel guilt at some time, especially when speaking of and mulling over the challenges we have encountered while dealing with AE. Specifically, our medical staff, our loved ones, caregivers and ourselves. Guilt is natural. And there is not one of us who is exempt from feeling guilt. But there is no shame in this at all. Rather, facing it will hopefully bring comfort and relief.

Let’s start with medical staff and personnel, for whom AE is difficult to diagnose on an easy day, but far more onerous on the typical patient. I am sure every one of us has a story regarding this, and a few (or more) grumblings to go along with that story. Because of the illness itself, we are a complicated group of patients and easy to misdiagnose at times. As we look forward, maybe we can all “move” forward and begin to forgive those that have had a hand in many of these stories.

Next, caregivers and loved ones. This is tough. Both have gone above and beyond on our behalf. We, AE Warriors, all present in different ways. In difficult ways, in funny ways, in scary ways, in tiring ways and everything in between. While there are trends, there is no standard. Many of the AE variations have typical presentations but still they can, and often do differ for each patient.

There are times when our loved ones and caregivers will feel guilt over what was said or done. They are Warriors, in a sense, just like us. When on the battlefield, decisions and suggestions can be made in the heat of battle that may not be perfect. We all have learned and will learn from these decisions. AE research is helping greatly with this and if we all work together, inroads will be made to make both treatments and results much better as we go forward. As we look to 2022, I suggest we hold our loved ones and caregivers near and tell them, often, how much we appreciate them in every way possible. They should feel no guilt but as much appreciation as we can give. Our loved ones and caregivers are — more often than not — everything to us.

Finally, what about us? AE Warriors are a hugely varied group, coming from every corner of the planet, with different paths, stories and diagnoses. Yet we are one. Not one of us would ever want to put our family, friends or anyone through what they go through. It is that simple. We are beyond appreciative for each one of them and everything they do for us. I could never begin to adequately express to all those involved in my care what I feel for them. No words can do this for me. My appreciation is beyond the words I write. Sometimes I feel guilt about this. And I am sure most AE Warriors feel this as well.

Then there is survivor’s guilt. This is emotional and hard to talk about. I am here. Some very special and loved people are not. Why is this so? Why are some folk’s symptoms and diagnoses more difficult to bear than others? Often, I feel guilty that I may have had any easier AE path and recovery than others, and I believe we have all felt something of this nature. I am grateful for all I have been given. I hope for a future that includes more research for AE so no one ever feels survivor’s guilt.

It’s my sincerest hope for a future that reveals every AE Warrior, caregiver and loved ones will be one in which we collectively move from Warrior and survivor to Warrior and thriver! As we move thru a holiday season that all of us can celebrate from whatever corner and culture we come from, maybe we can give each other a collective virtual hug, smile and look toward a positive, happier and healthier time. As 2022 begins, so does more research and help for all of us on every level from diagnosis, to treatment options, rehabilitation, ongoing care and recovery. Here’s to a new year and new beginnings!

Click here or the image below to subscribe to our mailing list:

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

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.

For those 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.

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

Who’s Who in the World of Physicians?

by Alanna | Jun 29, 2021 | Special Series

June 30, 2021 | By Mari Wagner Davis, RN, BSN, ACM

Message from the International Autoimmune Encephalitis Society Team:

The staff at IAES is proud to present a different type of blog. During the course our AE journeys each of us has had the pleasure of being treated by and interacting with what seems like an overwhelming diversity of doctors, specialists, nurses, and therapists. We have all had challenges keeping them straight. At times we have all had problems with knowing who to ask what, how to ask and where to go for assistance. AE is overwhelming enough and keeping all the medical personnel straight can sometimes make it even more challenging. We decided to try and help by creating an easy to understand and printable document that can assist us all in knowing who is who on our individual medical teams. Below you will find a link that you can use to create a printable document from the IAES website.

We hope you find this helpful!

Who’s Who in the World of Physicians?

Part I

If you have been hospitalized for Autoimmune Encephalitis, chances are you were seen by many different doctors. Keeping them straight can be difficult if you are not sick, let alone if you have Autoimmune Encephalitis and memory issues. This can be particularly challenging if you are a patient in a teaching hospital and may be seen by different levels of doctors. Teaching hospitals often have doctors who are participating in research and are often at the cutting edge of diagnosis and treatment. So, although you may be seen by different doctors who are in training, you are adding to their knowledge of Autoimmune Encephalitis.

What Types of Doctors are Seeing me and Why?

Emergency Room Doctors

If you enter the hospital through the emergency department, you will likely be seen first by an emergency room doctor. ER physicians are trained to identify and diagnose many different diseases and injuries. If a disease falls into a certain category, they may consult a specialist in that disease. For example, if a cancer patient comes into the emergency department an ER doctor may provide the initial treatment needed and then contact a doctor who specializes in cancer, called an oncologist, for treatment. Autoimmune Encephalitis patients who enter the emergency room should expect the ER doctor to consult a neurologist.

Neurologist

A neurologist is a doctor who specializes in illnesses of the brain and nerves. Once admitted an AE patient will likely be under the care of the neurology service.

In a teaching hospital, there are different levels of doctors in training. When you see a group of doctors come in for rounds, they all may be from the neurology service but can include doctors at different levels in their training.

Interns and Residents

Interns are doctors who are in their first year of residency. They have completed medical school and rotate to different areas of care in the hospital to learn from different specialties. Second- and third-year residents are further along in training. They may have been on that service before and are continuing their training. All of these doctors may be assigned to you are under the supervision of an attending doctor, who oversees the group.

Fellows

You may also be introduced to a fellow. A fellow is a doctor who has completed their residency and decided to specialize in a particular area of medicine. A teaching hospital may have 3-4 fellows in a particular specialty. Fellows remain on the neurology service. Since this is their chosen specialty of practice, you may see them both in the hospital and in clinic, as they learn about neurological illnesses.

Attendings

The attending is a doctor who has completed their training in both regular medicine and their specialty. They are the doctor who is the doctor of record and is in charge of the service. The attending doctor may direct care through the fellows and residents. The doctors will normally have rounds on a daily basis. At this time, they may discuss the exam the intern or resident did and what the plan of care is. They may also discuss tests and treatments that they need to do.

What can be helpful to understand is that an aspect of performing rounds in a teaching hospital is to teach the interns and residents, while providing outstanding care to patients. This is why you may see the attending doctor ask interns or residents questions and conduct open discussions regarding your care. You should consider yourself the most important part of the care team. Discuss any questions you have with the attending or fellow. If their time is too limited during rounds to adequately address your concerns, request that they return later that day to discuss your plan of care with you.

Due to the memory deficits that accompany Autoimmune Encephalitis, AE patients are advised to arrange to have a trusted family member with them during a hospitalization. During the Covid-19 pandemic, visits may be limited, and doctors may need to talk to family on the phone to share the plan of care.

The doctors should write their names on the dry erase board in your room to help you to remember their names. The nurses will do this at the beginning of their shift.

Physiatrist

There may be other types of doctors you see during your hospitalization.

You may see a physiatrist. A physiatrist is a doctor who specializes in rehabilitation. If the neurologist feels that you will benefit from inpatient or outpatient rehabilitation, they may ask the physiatrist to see you. The physiatrist will do an exam and make rehabilitation recommendations for you to follow once you are released from the hospital.

Should an issue arise where the neurologist feels the patient would benefit from an evaluation by a doctor who specializes in a different area of medicine, they will make a referral. Example, some patients may develop a rash after receiving IVIG. If this occurs, the neurologist may, refer the patient to dermatology. If a patient on seizure medication has elevated liver labs, a referral may be made to a gastroenterologist. Due to the high association between anti-NMDAr encephalitis and teratomas, the neurologist may ask an oncologist to consult and conduct testing to determine if a teratoma is present.

Psychologist and Psychiatrist

When a patient is released to home, they will continue to see doctors who specialize in different areas. The patient will have on-going follow-up appointments with their neurologist. Some patients may see a psychologist to help them deal with the adjustments of no longer being able to work, for example, and the daily life adjustments of dealing with deficits received from Autoimmune Encephalitis. Patients may see a psychiatrist or neuropsychiatrist who specializes in cognitive recovery to help identify the patient’s strengths while supporting their weaknesses and improve functional independence.

Part II

Once you have been diagnosed with Autoimmune Encephalitis, it can seem like a whirlwind of appointments, tests and treatments need to be done. If hospitalized, a patient can be seen by many staff in a day and it can be hard to understand each person’s role and how they work together. The more you understand about the medical system, staff and their roles, the easier it is to direct questions and concerns to the proper person and ensure that what is needed for discharge is put in place.

The Nursing Staff

If hospitalized, the staff person who you will likely see the most during the day is the nursing staff. This includes the registered nurse, who is licensed to give medications, and treatments and they direct staff that assist in caring for patients. Other caregivers may include LPNs (licensed practical nurses) and nurse’s aides. The nursing staff provides the care throughout the day, administers IV (intravenous fluids), medications and some of the other treatments that Autoimmune Encephalitis patients receive such as steroids and IVIG. The nursing care team provides any care the individual with Autoimmune Encephalitis cannot do independently including bathing, toileting, and eating. Plasmapheresis may be done by the nurse with the assistance of a pheresis technician trained in the pheresis machine.

Respiratory Therapist

If you as the patient or your loved one, is on or has been on a ventilator, a respiratory therapist will be involved in caring for the respiratory support machine and providing additional therapies such as chest physiotherapy (CPT) and suctioning, which the nurse may also do as needed. The respiratory therapist may also encourage the use of a spirometer, which is a tool used that a patient breathes into and encourages the person to take a deep breath.

Social Worker

The Autoimmune Encephalitis individual and family may be seen by a social worker, who will provide support and assess the home situation to determine if the person will need help at home. They can provide support to both the patient and family and often know of programs that can assist financially.

Nurse Case Manager

In addition to the social worker there is likely to be a nurse case manager involved. The nurse case manager is involved in ensuring quality of care during the stay, ensuring that the person is receiving the right level of care that they need and planning for either

discharge home or to a rehabilitation facility. If the person is being discharged home the nurse case manager will work with the family and the medical staff to put into place any care that is needed. If the person with Autoimmune Encephalitis needs to be discharged to a rehabilitation facility the nurse case manager will be involved in helping to facilitate that. The decision for discharge to a rehabilitation facility is usually based after a patient is seen by a physical therapist, occupational therapist and speech therapist. Therapists work with patients of all ages.

Physical Therapist

A physical therapist is a therapist who is licensed and trained in working with patients on movement, walking, balance. They can also help to train the family if the person going home needs help on how to safely transfer and move the individual.

Occupational Therapist

An occupational therapist is a therapist who works with patients on fine motor skills, so things that involve writing, school work or computer work in the work environment. They can help to create adaptive ways for the person to do what they did before illness or injury.

Speech Therapist

Speech therapists see patients with Autoimmune Encephalitis to work on cognitive skills. They help them develop new ways to remember things. Strategies to be organized. All of the therapies work as a team to work together and should ask the person with Autoimmune Encephalitis what their goals are, both short and long term and help to make a plan to work on these goals.

Child Life Specialists

Child life specialists are staff for pediatric patients. They help children understand their illness, the procedures and equipment in the hospital. They can provide support during procedures and can help prepare children prior to a procedure. They can help therapy services by providing play activities that include the therapy goals.

Vocational Rehabilitation Counselors

Vocational rehabilitation counselors are usually nurses who have been trained to work with patients and can help to determine if they are able to return to work, need a modified work plan or if they are unable to work and can direct the family to assist the person in applying for any disability benefits they qualify for. They can also assist if a person with Autoimmune Encephalitis would like to try to return to work by arranging a work trial. A work trial can be done in a job setting without putting the person‘s job related benefits at risk.

During the trial the vocational counselor works with the person, the employer and the disability provider. During the work trial goals are set that are needed to do the job and any adaptations that the person needs are identified. If the person can successfully work, it is evaluated during the work trial and the number of hours they can work is set. The patient can continue to work with the vocational counselor from time to time to reevaluate the work and work schedule. If they find that they are not able to do the work either due to their ongoing disability or illness, then the work trial ends and the disability benefits continue.

Neuropsychologist

Neuropsychologist, neuropsychiatric testing: after discharge and to obtain disability most individuals will need to see a neuropsychologist and have neuropsychology testing done by a person trained in testing. The testing can take up to 8 hours. The neuropsychology tester neutrally does the testing and the neuropsychologist will meet with the person with Autoimmune Encephalitis and family member to go over the results.

The test results can be used to qualify for disability, to follow a patient’s cognitive progress, assist educational staff for school age patients, as well as help the rehabilitation staff understand the deficits that the person continues to have.

Psychologist

Psychologists are doctors who are trained to work with people with Autoimmune Encephalitis around two main issues. They help the patient adjust to the losses they experience after becoming ill. Challenges around school, work or perhaps not being able to work, how memory loss is impacting their daily lives and dealing with other deficits acquired from AE and the feelings around accepting and dealing with the ‘new me’. They can also help work on cognitive issues assisting in developing adaptive strategies that will allow the person to function as well as possible.

Insurance Nurse Case Manager

Insurance nurse case managers: Disability or healthcare insurance may assign their own nurse case managers to the individual with Autoimmune Encephalitis after discharge from the hospital or rehabilitation. They can assist patients and families in ensuring that they have been able to apply for work disability insurance and social security benefits. They may call to check in with the person and family to see if they have any other additional needs and can assist in helping in any issues accessing in-network care if there is a concern.

The Patient and Family Caregivers

The most important member of the care team is the person with Autoimmune Encephalitis and their family. They are the one who is most affected by the illness and has the best idea of how they are doing compared to their previous baseline. Their opinions regarding healthcare, needs, progress and questions should be included within the care plan developed by the medical professionals. Without their input, progress cannot be determined. The person with Autoimmune Encephalitis and family should not be afraid to ask questions to gain an understanding of the disease and the person’s progress.

Download Printable Version

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

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.

For those 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.

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

Guilt and Forgiveness

by Alanna | Dec 30, 2020 | Special Series

December 30, 2020 | By Jeri Gore

By definition, guilt is like shame. Or pride or embarrassment. It has been described as a self-conscious emotion, one that involves reflection on oneself and sometimes on others.

This is a subject that is difficult for AE Warriors, caregivers and medical personnel on so many levels. As 2020 turns into 2021, I believe this is worth taking a look at, talking about, facing head-on — and putting to rest — in a kind and loving way. Turning over a new leaf, so to speak, as we head into a joyous, healthy and prosperous 2021.

We all feel guilt at some time, especially when speaking of and mulling over the challenges we have encountered while dealing with AE. Specifically, our medical staff, our loved ones, caregivers and ourselves. Guilt is natural. And there is not one of us who is exempt from feeling guilt. But there is no shame in this at all. Rather, facing it will hopefully bring comfort and relief.

Let’s start with medical staff and personnel, for whom AE is difficult to diagnose on an easy day, but far more onerous on the typical patient. I am sure every one of us has a story regarding this, and a few (or more) grumblings to go along with that story. Because of the illness itself, we are a complicated group of patients and easy to misdiagnose at times. As we look forward, maybe we can all “move” forward and begin to forgive those that have had a hand in many of these stories.

Next, caregivers and loved ones. This is tough. Both have gone above and beyond on our behalf. We, AE Warriors, all present in different ways. In difficult ways, in funny ways, in scary ways, in tiring ways and everything in between. While there are trends, there is no standard. Many of the AE variations have typical presentations but still they can, and often do differ for each patient.

There are times when our loved ones and caregivers will feel guilt over what was said or done. They are Warriors, in a sense, just like us. When on the battlefield, decisions and suggestions can be made in the heat of battle that may not be perfect. We all have learned and will learn from these decisions. AE research is helping greatly with this and if we all work together, inroads will be made to make both treatments and results much better as we go forward. As we look to 2021, I suggest we hold our loved ones and caregivers near and tell them, often, how much we appreciate them in every way possible. They should feel no guilt but as much appreciation as we can give. Our loved ones and caregivers are — more often than not — everything to us.

Finally, what about us? AE Warriors are a hugely varied group, coming from every corner of the planet, with different paths, stories and diagnoses. Yet we are one. Not one of us would ever want to put our family, friends or anyone through what they go through. It is that simple. We are beyond appreciative for each one of them and everything they do for us. I could never begin to adequately express to all those involved in my care what I feel for them. No words can do this for me. My appreciation is beyond the words I write. Sometimes I feel guilt about this. And I am sure most AE Warriors feel this as well.

Then there is survivor’s guilt. This is emotional and hard to talk about. I am here. Some very special and loved people are not. Why is this so? Why are some folk’s symptoms and diagnoses more difficult to bear than others? Often, I feel guilty that I may have had any easier AE path and recovery than others, and I believe we have all felt something of this nature. I am grateful for all I have been given. I hope for a future that includes more research for AE so no one ever feels survivor’s guilt.

It’s my sincerest hope for a future that reveals every AE Warrior, caregiver and loved ones will be one in which we collectively move from Warrior and survivor to Warrior and thriver! As we move thru a holiday season that all of us can celebrate from whatever corner and culture we come from, maybe we can give each other a collective virtual hug, smile and look toward a positive, happier and healthier time. As 2021 begins, so does more research and help for all of us on every level from diagnosis, to treatment options, rehabilitation, ongoing care and recovery. Here’s to a new year and new beginnings!

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

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.

For those 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.

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

The Autonomic Nervous System and Dysautonomia in AE

by Alanna | Nov 10, 2020 | Special Series

November 11, 2020 | Sarah Reitz, PennNeuroKnow

Dysautonomia is a collection of disorders that involve dysfunction or impairment of the autonomic nervous system (ANS). It affects more than 70 million people worldwide, and can be caused by a number of disorders, including autoimmune encephalitis (AE)¹. To better understand dysautonomia as a symptom of AE and other disorders, it is helpful to first know how the healthy ANS works.

What is the autonomic nervous system?

The ANS, as its name might suggest, controls the automatic processes of the body that we do not have to consciously think about. Some of these include regulation of heart rate, blood pressure, body temperature, breathing, kidney function, and digestion. The ANS regulates this huge variety of processes through its 3 branches, or subdivisions: the sympathetic, the parasympathetic, and the enteric nervous system².

The sympathetic branch of the ANS is commonly called the “fight or flight” branch and is largely responsible for activating the physiological processes described above, quickly mobilizing the body to respond to changing conditions. This means that activation of the sympathetic nervous system produces effects such as increased heart rate and blood pressure, dilated pupils, decreased digestion, and increased breathing rate².

On the other hand, the parasympathetic branch is considered to be a dampening system, generally inhibiting the same processes that are activated by the sympathetic nervous system. It is sometimes called the “rest and digest” system, as it stimulates digestion by increasing blood flow to the intestines and production of saliva, slows heart rate, and constricts the pupils. The third branch of the ANS, the enteric nervous system, also controls the gastrointestinal tract by regulating gut motility as well as the secretion of digestive enzymes and mucus².

These three branches work together to ensure the body responds properly to any given situation, like increasing body temperature when it is cold, or decreasing heart rate and blood pressure when you are relaxed and need to digest a meal. But how do they know when to activate or inhibit specific physiological processes?

Two of the main branches of the ANS, the sympathetic and parasympathetic branches, play generally opposing roles in controlling many physiological processes such as heart rate, blood pressure, and digestion.

The organization of the autonomic nervous system

The sympathetic and parasympathetic branches of the ANS involve 2 types of neurons (Figure 1). The first type are called preganglionic neurons, and are located in the central nervous system: either the brainstem (for the parasympathetic branch) or the spinal cord (for both sympathetic and parasympathetic branches). These preganglionic neurons project to a specific cluster of neurons—called a ganglion—where they connect to a postganglionic neuron. Preganglionic neurons for both major branches communicate with the postganglionic neuron using a neurotransmitter called acetylcholine².

The postganglionic neurons then act as a relay center, passing the message from the brain or spinal cord to the appropriate muscle or organ. While the postganglionic neurons of the parasympathetic nervous system use acetylcholine to communicate with the target tissue, postganglionic neurons in the sympathetic nervous system transmit their messages using a different neurotransmitter, called norepinephrine². This difference in the chemical signal allows the two branches to produce opposite effects on the muscles and organs. Together, these branches of the ANS work together to integrate signals from the brain and spinal cord to produce the appropriate physiological response to any given situation.

Dysautonomia

Dysautonomia results when the ANS does not function properly. Usually, this means one or more systems or processes controlled by the ANS fail or are impaired, but cases of dysautonomia have also occurred due to an overactive ANS. Dysautonomia can be categorized into two large classes: primary dysautonomia, which occurs on its own without other existing conditions, and secondary dysautonomia, which occurs as a result of another disease such as Parkinson’s, diabetes, lupus, or autoimmune encephalitis^1,3-6.

Because the ANS is so broad and controls such a wide array of systems and responses in the body, the symptoms of dysautonomia are extremely variable from person to person and can be unpredictable. Symptoms can range in severity, and even the severity level can change across time within a single person. For instance, some people find their symptoms get worse during stressful times, but then improve as stress decreases. Others find that dehydration or overexertion can trigger symptoms. Symptoms can be local, only affecting one aspect of the ANS, or a full, global autonomic failure. One common symptom is orthostatic intolerance, meaning it is hard to stand up for a long time without feeling faint or dizzy. Other symptoms that a person with dysautonomia might experience include things such as swings in body temperature, heart rate, or blood pressure, gastrointestinal problems, low blood sugar, dehydration, shortness of breath, and mood swings¹.

How is dysautonomia diagnosed?

One test that is commonly used to diagnose dysautonomia is called the tilt table test. During this test, the patient is connected to equipment that monitors heart rate, blood pressure, and oxygen levels. They then lie on a table that can be tilted at different angles. As the table is tilted in various directions, the equipment measures how well the body regulates blood pressure, heart rate, and oxygen levels. While a person without dysautonomia will be able to keep those measures constant regardless of their body position, a person with dysautonomia will typically have swings in these measures as their body is tilted in different positions since the ANS cannot regulate them properly. However, since dysautonomia symptoms can vary widely, doctors can also use other, more specific tests of the affected organ systems to help diagnose the disease¹.

Treatment for Dysautonomia

While there is currently no cure for this group of diseases, there are multiple ways to manage the symptoms. Some of these are as simple as standing up slowly, avoiding extreme heat, drinking more water every day or adding extra salt to your diet to help maintain a normal blood pressure. Other treatments include sleeping with your head elevated 6-10 inches above your body, or taking medication to increase blood pressure¹. Again, due to the variability of the disorder, symptom management depends on the specific symptoms experienced by each patient. For secondary dysautonomia, such as dysautonomia associated with autoimmune encephalitis, treatment of the underlying disease may improve the dysautonomia symptoms¹.

Dysautonomia in autoimmune encephalitis

ANS dysfunction is known to occur in various types of autoimmune encephalitis, including anti-GAD65³, anti-CASPR-2⁴, and limbic encephalitis⁵. However, it seems to appear most frequently in anti-NMDAR encephalitis, with one study finding that about 35% of patients under age 12 and 50% of patients over age 12 show ANS-related symptoms⁶, compared to the roughly 10% of patients with limbic encephalitis who experience ANS-related symptoms⁵. NMDA receptors are found in both the cholinergic and noradrenergic systems⁷, which as mentioned earlier are critical in ANS signaling. The decrease in the number of NMDA receptors caused by the autoantibodies directed against them might explain why dysautonomia is more common in this specific type of autoimmune encephalitis.

Because dysautonomia as a symptom of AE is a type of secondary dysautonomia, treating the source of the encephalitis itself can often help resolve the ANS symptoms^8,9. However, severe ANS dysfunction is associated with worse outcomes in AE patients that require ICU treatment¹⁰. A study of 500 patients with anti-NMDAR encephalitis found that ANS dysfunction was responsible for the majority of the deaths in the cohort⁶. Thus, understanding dysautonomia in the context of AE is critically important. Increasing awareness of dysautonomia as a symptom of AE is also crucial, as it may help patients receive a proper diagnosis much faster, allowing more time for treatments to be administered and to be effective before the autonomic symptoms become severe and even life-threatening.

Image References:

Figure 1: Image by Geo-Science-International via Wikimedia Commons, CC0 1.0. https://commons.wikimedia.org/wiki/File:The_Autonomic_Nervous_System.jpg

References:

Dysautonomia: Symptoms, Causes, Types, & How to Live With. Retrieved October 2, 2020 from https://my.clevelandclinic.org/health/diseases/6004-dysautonomia
Gibbons, CH (2019) Chapter 27: Basics of autonomic nervous system function. In Handbook of Clinical Neurology. Volume 160, pp. 407-418.
Ben Achour N, Ben Younes T, Rebai I, Ben Ahmed M, Kraoua I, Ben Youssef-Turki I (2018) Severe dysautonomia as a main feature of anti-GAD encephalitis: Report of a paediatric case and literature review. Eur J Paediatr Neurol. 22(3):548-551.
Irani SR, Pettingill P, Kleopa KA, Schiza N, Waters P, Mazia C, Zuliani L, Watanabe O, Lang B, Buckley C, Vincent A (2012) Morvan syndrome: clinical and serological observations in 29 cases. Ann Neurol. 72(2):241-255.
Irani SR, Alexander S, Waters P, Kleopa KA, Pettingill P, Zuliani L, Peles E, Buckley C, Lang B, Vincent A (2010) Antibodies to Kv1 potassium channel-complex proteins leucine-rich, glioma inactivated 1 protein and contactin-associated protein-2 in limbic encephalitis, Morvan’s syndrome, and acquired neuromyotonia. Brain133:2734-2748.
Titulaer MJ 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(2):157-165.
Maramottom BV & Jacob A (2011) N-methyl D-aspartate receptor encephalitis: a new addition to the spectrum of autoimmune encephalitis. Ann Indian Acad Neurol. 14(3):153-157.
Sansing LH, Tuzun E, Ko MW, Baccon J, Lynch DR, Dalmau J (2007) A patient with encephalitis associated with NMDA receptor antibodies. Nat Clin Pract Neurol. 3(5)291-296.
Ren C, Nai Y, LV W, Liu H, Chen Q, Sun Z-W, Wang J-H, Guan L-N, Gong L, Wang X-T (2019) Focus on autonomic dysfunctions in anti-NMDAR encephalitis: a case report. Eur Rev Med Pharmacol Sci. 23(24)10970-10975.
Schubert J, et al. (2019) Management and prognostic markers in patients with autoimmune encephalitis requiring ICU treatment. Neurol Neuroimmunol Neuroinflamm. 6(1).

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Who’s Who in the World of Physicians?

Part I

What Types of Doctors are Seeing me and Why?

Part II

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What is the autonomic nervous system?

The organization of the autonomic nervous system

Dysautonomia

How is dysautonomia diagnosed?

Treatment for Dysautonomia

Dysautonomia in autoimmune encephalitis

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