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A Mother’s Wish for a Mighty Miracle’s 7th Birthday

A Mother’s Wish for a Mighty Miracle’s 7th Birthday


November 24, 2022 | By Janine Samuela-Carasus

Introduction from the IAES Blog Team:

As we wrap up caregiver awareness month and in the spirit of this season’s giving of thanks, the staff at IAES wish to share with you this beautiful story of hope and the true power of those that care for us the most. Each AE Warrior is here today because of those that care for and love us. We are thankful beyond words. We hope you find this story as inspirational as we have, and we truly hope you all have a wonderful Thanksgiving!

To read more of Zoe’s story and her family please enjoy the first blog in this AE journey: https://autoimmune-encephalitis.org/never-give-up-miracles-happen-every-day/

 

—–

My name Janine Samuela-Carasus. I am 29 years old and from the Philippines.

Five years ago, in the middle of August 2017, our toddler that was almost two years old was diagnosed with anti-NMDA receptor Encephalitis.

We were stuck in a pediatric ICU unit for three weeks with Zoe and then, literally, lived in the hospital for the longest two months of our lives. As you can imagine, hundreds of tests and procedures were done every single day to try and figure out what was happening to our precious little girl. Our hearts were broken by every single negative result. No one knew what was happening to our girl. She seemed to be getting sicker and sicker each day.

Bills began piling up. All we understood was that her condition continued to worsen each day until she was not responding anymore. But with all this negativity, there was never a moment, a day, or a week that I thought of giving in and giving up. Never did a second go by that we lost hope that things would get better.  With constant prayer, the help of the Lord, and the vigilance of our brilliant doctors, we kept hope alive.

Eventually, we were able to bring Zoe home although she was in a non-responsive vegetative state. We had no idea or any medical assurance that she would recover and regain her strength again and be the precious girl we knew and loved.

For me, it was a mix of emotions. I was happy we were finally home and terrified of what the future would bring all at the same time. I worried if I would be strong enough for Zoe and if I would be able to help her. I did know one thing for certain, even if it took her forever to recover, I would be there. I knew even if it meant sacrificing my own life and personal dreams, I would be there. And I did. Never did I leave her side, nor did I sleep away from her even for a night. I, religiously, made her blended food and fed her via a feeding tube for months. I took her to doctor’s appointments, therapy sessions, and every appointment that was necessary. I made sure Zoe was and felt loved every minute of every day and spoke to her all the time as if nothing was wrong.

All our prayers were answered. Zoe’s recovery was a long slow two-year road that we all traveled together. We watched her slowly improve, we cried with her when the therapy was hard until she got to the point to be able to face the world again! 

To date, our daughter is back to being her best self. Her gross motor and cognitive skills are significantly improved. She has been able to overcome her stranger anxiety and started attending formal school. We are very excited for her to spread her wings and begin to fly. She will be bringing with her the scars of a well-fought past showing how strong and resilient she is. Our family will be right by her side!

Our fight and Zoe’s fight do not end here. AE could happen anytime in her life again. It can happen to anyone. I will always be proud of our story of faith, strength, and love. We plan to always fight for AE awareness so everyone can get diagnosed quicker and not have to go thru all the pain we had as a result of this terrible disease.

Zoe turns seven years old this month. I want Zoe to read and understand our story, her story. Zoe may not be able to remember all aspects of her AE journey but thru this story, I hope she understands, in her heart, that we, as a family, are one. And we will conquer everything that comes our way!!  

 

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Tabitha Orth 300x218 - A Mother’s Wish for a Mighty Miracle’s 7th BirthdayOn 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.

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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 - A Mother’s Wish for a Mighty Miracle’s 7th Birthday

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.  

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

 

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Caregiver Honorable Mention

Caregiver Honorable Mention


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.

 

MariDavis - Caregiver Honorable Mention

 

Mari Davis, RN, ACM

Support Services Coordinator

International Autoimmune Encephalitis Society

 

 

 

 

 

 

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

Tabitha Orth 300x218 - Caregiver Honorable MentionOn 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.

guidestar platinum logo 300x300 1 e1605914935941 - Caregiver Honorable Mention

 

 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 - Caregiver Honorable Mention

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.  

AE Warrior Store 300x200 - Caregiver Honorable Mention 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

Continuing My Way Up The Slippery Slope: A Poem

Continuing My Way Up The Slippery Slope: A Poem


September 27, 2022 | By Angie Fitch

Introduction from the IAES Blog Team:

The staff at IAES is proud to share with you a poem written by an amazing AE warrior that has been battling AE since the Fall of 2020. Each one of us feel the emotions, the ups and downs and roller coaster like ride AE takes us on. Thank you, Angie, for so eloquently putting pen to paper the feelings we all share!

Angie Fitch 4 n 281x500 - Continuing My Way Up The Slippery Slope: A Poem

——-

Good, bad, up, down, round and round.

I feel as though I’m on a merry-go-round.

Full of uncertainty if it will ever stop spinning; Full of frustration as I remain on my couch sitting.

I just want to live.

I just want to die.

I just want to do more than just survive.

I just want this nightmare to finally subside.

Convincing others and myself to remain positive and hopeful, when deep down inside I feel the opposite and woeful.

Confused, angry and sad is what I feel; But never reveal; All I can do is hope that I heal.

Why me, why now, why at all? The pity party sets in as I continue to fight and pray that I don’t give in.

The fatigue, the limitations, the pain and loss of ambition; The debilitating life that I have been given.

I will live; I will thrive; I will ultimately win and survive; This is what I tell myself; This is what I tell others as my pain remains undercover.

My strength then comes back; It’s going to be alright; it’s going to be okay; I will continue the fight day to day; I will keep the hope and learn to cope; I will continue my way up this slippery slope with hopes of support and love of some sort. 

Angie Fitch 3 n 281x500 - Continuing My Way Up The Slippery Slope: A Poem

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

Tabitha Orth 300x218 - Continuing My Way Up The Slippery Slope: A PoemOn 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.

guidestar platinum logo 300x300 1 e1605914935941 - Continuing My Way Up The Slippery Slope: A Poem

 

 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 - Continuing My Way Up The Slippery Slope: A Poem

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.  

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

My Journey to Raising Awareness for Anti-NMDAr Autoimmune Encephalitis

My Journey to Raising Awareness for Anti-NMDAr Autoimmune Encephalitis

June 23, 2022 | By Reyna Felix

Introduction from the IAES Blog Team:

It is with great pleasure that IAES presents the story of one of our mighty Warriors. Reyna Felix, in her own words, explains the events that finally lead to her diagnosis during the beginning of a worldwide pandemic that left her alone without family and friends by her side at the very beginning of her AE journey. Her story was picked up by a few TV news channels and lead to an article written about her struggles in the Barrow Neurological Foundation newsletter. The link to this article is below. The Barrow Neurological Foundation strives to advance neurological research, patient care and provide education to help save lives. 

Reyna Felix 11 - My Journey to Raising Awareness for Anti-NMDAr Autoimmune EncephalitisMy name is Reyna and I am 29 years old. I have been married for 5 years (together for 11), I have worked as a 911 dispatcher for the past 7 years, and I am a dog mom to a fun rescue pup. I love to read, hike, exercise, travel, cook, and learn new things.

I am also a survivor of anti-NMDA receptor Autoimmune Encephalitis. Like most patients, my diagnosis was not easily found. The search for what was wrong with me included weeks of struggle for myself and my family. As you’ll read about in the article, I was dismissed from hospitals or left against medical advice. I spent time in a psychiatric facility, and eventually was correctly diagnosed and began the treatment process which led into the recovery process I am now in. I am missing many months of life from my memory, which is a common symptom of this disease. I received my diagnosis in April 2020 which was at the same time as a pandemic began around the world. This compounded the struggles experienced by my husband and family. Hospitals had restrictions on people accompanying patients in emergency rooms, ICUs, rehabilitation facilities, etc. and I was in no condition to be responsible for myself during the worst of my symptoms. There was about a 40-day period where my husband couldn’t be with me in person which increased the emotional stress of my condition for him. A teratoma was located and removed, I received a few IVIG treatments, and then I received two weeks’ worth of everyday Plasmapheresis which significantly improved my condition. It was during this time that I began to “wake up.” I spent two weeks becoming more alert, learning how to eat on my own, write, speak, walk, etc. during inpatient neurological rehab. I was discharged to return home with restrictions such as 24/7 supervision and outpatient therapies such as speech, physical, and occupational therapy that continued for 3 months. In June 2020, I started rituximab treatments that I continue to receive twice a year.

Reyna Felix 12 - My Journey to Raising Awareness for Anti-NMDAr Autoimmune Encephalitis

I continue to work on my mental and physical health, and I receive testing to ensure I am doing well by my doctors such as neuropsychological tests and cancer screenings. In September 2020, a local news channel picked up my story and did a short interview about Autoimmune Encephalitis which led to another news channel completing a story on me for my first World Encephalitis Day in February 2021. My neurologist shared with me that these two stories were shared amongst other doctors and hospitals and contributed to more awareness and for clinical studies needing to take place. More studies and awareness for this condition means that, someday, people will be diagnosed and treated properly which will lead to better outcomes for more people. I am not someone who enjoys attention.  I used to keep my life private but all I hope for from opening up about my experience is to help others get proper treatment, raise awareness for medical professionals and other people to understand more about the disease, and to show other patients and families that successful recovery is possible.

Autoimmune Encephalitis came into my life swiftly and had the potential to destroy it, but it has not won. My life looks differently now but I am alive. I have bad days and good days, but life is full of ups and downs that we can move forward through. While a lot of our symptoms and experiences can be similar, I think it’s important to remember that we are each individual so it’s also good to remind yourself to not compare your own personal progress and recovery to other patients.

To all my fellow warriors, we’ve got this. You are loved, you are strong, and you deserve to be happy and alive. To all our caregivers, families, friends, medical professionals, etc., thank you for what you do to help us each day. Additionally, I hold those who have passed from Autoimmune Encephalitis and their families close in my heart.

Reyna Felix 8 - My Journey to Raising Awareness for Anti-NMDAr Autoimmune Encephalitis

 

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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 - My Journey to Raising Awareness for Anti-NMDAr Autoimmune Encephalitis

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.  

AE Warrior Store 300x200 - My Journey to Raising Awareness for Anti-NMDAr Autoimmune Encephalitis 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

A Happy Ending for Surprise Diagnosis for One Doctor by Another Doctor from a Land Far Far Away

A Happy Ending for Surprise Diagnosis for One Doctor by Another Doctor from a Land Far Far Away

June 23, 2022 | By Mozna Osman

Introduction from the IAES Blog Team:

IAES is proud to present to you the AE story of a doctor that truly exemplifies our international impact! We hope you find this as inspirational as we have.

—–

I am a family medical doctor living and practicing medicine in Khartoum, Sudan. My story began about three years ago when I realized I was often feeling very tired and had terrible headaches. I decided to go and get my own blood work analyzed to see if there were any obvious issues going on. What I found out was that I had Malaria and a UTI (urinary tract infection). As a doctor, I decided to go ahead and treat myself with the appropriate medications needed for both issues.

I thought I was doing well and, on the mend, but I was not. Not long after this, my son found me, unresponsive, on the floor. I was admitted into the intensive care unit (ICU) of a local hospital and was in a coma for a month. As luck would have it, a visiting doctor from Chicago was asked to review my case. After reviewing my medical chart, he diagnosed me with anti-NMDA Autoimmune Encephalitis. He suggested a course of treatment that included medication and plasmapheresis. I feel very fortunate and blessed to have had my case reviewed by a doctor from so far away.

I am now feeling much but better but I still suffer from memory issues like many patients with AE. My short memory seems more affected by AE than my long-term memory but is getting much better. I am happy to report I am back to practicing medicine and am working at AL-Shaheed Wedatallah Medical Center in Khartoum. I am hoping for a bright, happy, and healthy future.

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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 - A Happy Ending for Surprise Diagnosis for One Doctor by Another Doctor from a Land Far Far Away

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.  

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

 

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Jackie Stebbins’ Book Release – Unwillable

Jackie Stebbins’ Book Release – Unwillable

June 8, 2022 | By Jackie Stebbins

Introduction from the IAES Blog Team:

Autoimmune Encephalitis Warrior and now author, Jackie Stebbins, released her first book regarding her AE journey to great acclaim in early June 2022! We are proud to support Jackie, to further AE awareness and to celebrate a very happy ending! Jackie’s book can be purchased on Amazon here.

—–

In some ways, I still cannot believe it’s true. I published a book! Susannah Cahalan, author of Brain on Fire, says Unwillable is “as moving as it is important.”

As I write this, it’s June 5, 2022. That means exactly four years ago, I took my place in a wing of a clinic in Bismarck, North Dakota, full of overstuffed, brown chairs and IV poles behind them. I was there for my first IV steroid treatment, to hopefully turn my brain back on from autoimmune encephalitis (AE).

As I sat in the recliner, broken from a violent seizure, lost from the past few months of hell, and still in a cognitive fog, my family prayed that the steroids pumped through my body could save my ailing brain. And in a grand stroke of luck, the steroids did almost immediately save me. My life was quickly turned around again, but so much had already been lost. Damage was done.

282611734 819445159443008 7686218785706316893 n - Jackie Stebbins' Book Release - UnwillableMy husband took a photo of me that day. My eyes look tired, afraid, and lost. Four years later, I see that same tired, scared woman, but I want to hug her and tell her: It’s okay. This story has a happy ending.

The capstone of the AE journey I’ve been on is the publication of my memoir, Unwillable: A Journey to Reclaim My Brain. On June 1, 2022, Unwillable was officially launched and is available for purchase on Amazon.For me, this is one of the happiest outcomes I could have ever imagined after the past years of grief, loss, imbalance, heartache, tears, and life’s drastic changes. Unwillable was a way for me to process my trauma, share my feelings, and hopefully, help spread awareness about the illness that almost ended my life.

AE is a disease that devastates and destroys those in its path. Until we have standardized treatment, a cure, and no one else ever again suffers from this monster, the best we have is hope. Hope for better days ahead and dreams of an AE-free world. 

Wherever you and your family are in your journey with AE, it is my sincere hope that Unwillable finds a way to your heart and helps you in your struggles. 

In solidarity, 

Jackie M. Stebbins, Esq.

jmstebbins.com

unwillable.com

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

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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 - Jackie Stebbins' Book Release - Unwillable

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.  

AE Warrior Store 300x200 - Jackie Stebbins' Book Release - Unwillable 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

 

Psychosis or Something More? A Family’s Search for Answers

Psychosis or Something More? A Family’s Search for Answers

May 26, 2022 | By Libya Matney

Introduction from the IAES Blog Team:

The International Autoimmune Encephalitis Society is proud to present to you the AE story of one of our mighty Warriors in her own words, an article written about her AE path in the University of Arkansas newspaper (link below) and beautiful artwork given to her by a wonderful friend and artist depicting her within the struggle of this devastating diagnosis!

 

As a 21-year-old stay at home mom to a precious little boy, Benjamin, I never thought that something so life-altering would happen to me. My husband and I had spent 9 months trying to conceive our second child. Finally, in June of 2021, we were able to get pregnant. Around the same time, many random things started happening to my body. Nobody understood what was happening. My scalp was burning, I had chronic migraines, confusion, insomnia, OCD tendencies, and I started showing aggression towards my family. All these things seemed to begin to rule my life. I began cleaning my house aggressively and trying to get rid of everything that I own. I would tear things out of the closets and try to reorganize them at the same time. I was exhausted. I was forgetting everything. I began to believe that I couldn’t be left alone to take care of my son. My family and friends began taking turns staying with me during the day. At this point I had been to the doctor several times and had multiple blood tests and two CT scans. Everything came back normal.

On August 19th, 2021, my husband and mother-in-law decided to take me to a hospital in Fayetteville, Arkansas (AR) to see if they could figure out what was happening to me. They performed the same blood tests and scans that I had received previously and, of course, they came back normal. On the way home from the hospital that day, I had what the doctors would call a “psychotic break”. I began kicking and hitting my husband in the car and trying to open the door to get out. My husband and mother-in-law frantically called my mom. She said that she could hear my husband in the background begging me to stop. My mom told them that she was on her way to us and to call 911. When the police and Emergency Medical Services (EMS) arrived, my mom had my doctor on the phone to convince them that something was medically wrong with me and that I needed to be taken to the emergency room (ER). When EMS tried to get me to the gurney I dropped to the ground. They had to lift me onto the gurney and into the ambulance. This was when I was transported to the ER in my hometown, North Arkansas Regional Medical Center (NARMC). The last thing I remember from that fateful day was stopping in a restaurant parking lot and trying to get out of the car. I don’t remember the police or paramedics being there. I don’t remember anything from the rest of that day or the month that followed.

My family has told me that while I was in the ER, I kept trying to leave. I would fight the medical staff and my family so hard that they had to restrain my arms and legs to keep me from getting out of bed or hurting myself. During the 4 days that I was in the ER at NARMC, I had a CT scan, an MRI, a spinal tap, and multiple blood tests done. I ended up miscarrying my child the last day that I was there. I was transferred to St. Bernard’s Medical Center in Jonesboro, AR on August 23rd, 2021. During the transfer, I slipped into an unresponsive/catatonic state. A procedure was performed to remove the tissue from the fetus, as well as the same testing that had previously been done in the ER. Other testing that was done consisted of EEGs and ultrasounds. Six days after being transferred I was placed on a ventilator because of having back-to-back seizures and my heart stopping. After two weeks of having no nourishment besides IV fluids, a feeding tube was also placed in my nose. I was in St. Bernard’s for a month before they sent my blood and spinal fluid to Mayo Clinic. An infectious disease doctor diagnosed me with anti-NMDA Receptor Autoimmune Encephalitis and GFAP. A few days before I left St. Bernard’s, I woke up with a feeding tube still in my nose. I did not know the month, day, or what was happening. I couldn’t walk or use the right upper side of my body. Also, due to having been on the ventilator and having the feeding tube, I could not talk. I was given a letterboard to communicate and the first thing that I asked about was my pregnancy. I couldn’t remember miscarrying the baby. On September 22nd, I was transferred to Barnes Jewish Hospital in St. Louis, Mo. Doctors began plasmapheresis (plasma exchange).  During the 10 days that I was there I received 5 rounds of it. I had another MRI, EEG, spinal tap, and two ultrasounds during my stay there.  Blood and spinal fluid samples were sent to Mayo Clinic to be rechecked. On October 1st, I was moved to Everest Rehabilitation Center in Rogers, AR, where I spent every day in physical, occupational, and speech therapy. I had to relearn how to walk, and I had to regain my physical strength and my voice. My last week at the rehab center, I finally got to see my son, Benjamin, after not seeing him for over a month. They included him in my physical and occupational therapy. On October 19th, two months after being taken to the first hospital, I was released to finally go home. When I got home, I started outpatient physical therapy at Mount Carmel Physical Therapy Center in Harrison, AR. I had physical therapy twice a week for 8 weeks. In January of 2022, I had two rounds of Rituxan infusions.

I am now back home with husband and son, and I can enjoy spending time with my family and friends once again. My life will never be the same after my AE diagnosis. I will always have to keep tabs on my stress levels and watch for signs of relapse. I still have months before I can drive again and am still at risk for seizures. However, I have learned a lot the past year. I’ve been cared for by people that will forever hold a place in my heart. I’ve grown, I’ve changed, and I am thankful for the life and family that God has blessed me with. 

libya matney art - Psychosis or Something More? A Family's Search for Answers

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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. 

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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.  

AE Warrior Store 300x200 - Psychosis or Something More? A Family's Search for Answers 

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

 

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The Darkness of a Brain on Fire

The Darkness of a Brain on Fire

April 27, 2022 | By Chelsea Wagner

 

CW 3516 375x500 - The Darkness of a Brain on FireNumbers, numbers, numbers – we all have them. It’s how we organize and make sense of what’s happened to us. It is how we put our experiences into boxes so that they don’t spill over into every aspect of our lives.

For me it was 1,000 mg of steroids, 7 Plasmapheresis infusions, 6 EEG’s, 5 MRIs, 4 CT scans, 1 PET scan, 1 botched lumbar puncture, 1 traumatizing bedside central line insertion, and countless fascinated residents, fellows, and physicians who had no idea what was happening to me right in front of them. All those numbers were packed into a 31-day hospital stay split between 2 hospitals in the largest medical center in the world. And those numbers lead me here, to you, to the Autoimmune Encephalitis community.

During February 2019, I began to experience subtle signs and had an overwhelming feeling that something was “off” with myself. I had trouble spelling words, remembering passwords and even had trouble speaking with patients I saw as a genetic counselor. I began experiencing extreme anxiety, panic attacks, and other neurological symptoms. I would eventually go to the ER after my doctor discovered a right sided facial droop, fearing that I was having a stroke, I was admitted to the first of 2 hospitals.

During my lengthy stay on the stroke recovery unit (the youngest person by several decades), the doctors would be puzzled by my progressing symptoms and my eventual catatonic state. I lost the ability to speak, read, and write. After being placed on high-dose steroids, I became violent and turned into what the nurses and my family would call the “she-hulk” and throw objects, kick walls, and wrestle with hospital staff as they put restraints on my ankles and wrists and bound me to my hospital bed for days at a time. During this time, I would become a prisoner of my own mind. I endured auditory and visual hallucinations of my worst nightmares and lived in multiple alternate realities, many of which included me dying. I would return to reality for only brief periods of lucid time – although I could not speak or recognize my family, the terror and confusion were respite to what was happening inside of my mind. 

Eventually, the first facility would diagnose me with seronegative autoimmune encephalitis – but did not implement the well established treatment for AE – and I was sent home from the first hospital on a steroid taper with no attempt at plasmapheresis exchange or IVIG. The doctors were frustrated with me and with what little I was able to comprehend. They had given up on me regaining any semblance of normal cognitive function. They told my husband and family that I’d go home and I’d either “get better, or I wouldn’t.”

I didn’t. In fact, I was actively hallucinating as they discharged me from my first hospital and then spent an interim week drifting in and out of reality – barely able to communicate, having dystonic movements and absence seizures. I was clearly getting worse. I was fortunate enough to have personal connections to another hospital due to my job as a genetic counselor in the medical center. I was rushed in for a same day appointment with a leading neurologist in Autoimmune Encephalitis and admitted directly from her clinic to my second hospital.

After receiving the first of seven plasmapheresis exchange treatments, it was like a fog was lifted. Blobs of strange people began to take the shape of my husband, my mom, my friends and family. I found my voice, although Broca’s aphasia made it hard to communicate, I started making progress in speech and occupational therapy. Everyday it felt like fireworks were going off in my brain – the zing of new neural connections being made – I would tell my therapists “I can feel it in my brain” – every sense heightened, every new word remembered became a cause for celebration, every step around the ward was a sign of my physical strength returning. Who would have guessed the exhilaration of holding a crayon in my hand could bring, or the relief of hearing my name and knowing it was mine? The doctors were impressed and optimistic about my recovery, but no one could predict how much cognitive function I would regain.  I was told I would likely never be the same person I was before. And in so many ways that is true.

CW 7606 375x500 - The Darkness of a Brain on FireEven after my second discharge, I had months of speech therapy, occupational therapy, and cognitive rehabilitation. I lost most of my independence – depending on everyone around me to drive me everywhere, make follow-up appointments, pay my bills because reading words on a screen was akin to reading hieroglyphics. I felt, at my worst, like a burden to those around me, weighed down by guilt and shame of the upheaval I had caused in our lives. I felt lost in my professional life, unsure of who I was or what I contributed to a society where my 19 years of education did not triumph over my brain trauma. I felt alone, because no one had been inside my mind and could understand exactly what I had been through: how harrowing, how terrifying, how humbling, it is to stand on the brink of insanity and be brought back from the darkness of a brain on fire.

No one except this community – reading your experiences, your struggles, your triumphs – they connect me in a way I never thought I would be able to connect and helped me understand my singular experience is part of a larger community experience. Almost three years later, I have returned to my full-time job as a genetic counselor and help patients navigate an overly-complicated and often frustrating healthcare system that I am all too familiar with. My compassion and empathy for those struggling with a diagnosis, finding resources, and advocating for themselves abounds. And I am grateful to be here, to be able to return to my career, to recognize my husband’s face, to be alive, to be typing these words. I know that when I lay awake at night (because, hello, insomnia!) thinking of how everything has changed for me since AE – there is light, there is hope, there is resilience, there is grit, there is strength in me. All it takes is a brain on fire to illuminate it.

CW 3636 376x500 - The Darkness of a Brain on Fire

 

 

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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. 

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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.  

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

 

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Through the Eyes of Mom

Through the Eyes of Mom

March 23, 2022 |By Luz Neira Alvarez

A message from the IAES blog staff:

The staff at IAES is proud to present to you a poetically and beautifully written blog from a mother to a daughter with AE! This shines a light on the heartbreak, caring and love AE brings forth in those that care about us most!

 ——–

The wind caressed your face in the freedom, flying was your passion, not just living every day for 12 years, but imbuing passion in your brush strokes, mixing colors was your entertainment, how can you not reminisce about fulfilling the limits of your imagination, you created more than a surprising image. Keeping your body constantly in motion freed ideas, you visited new and beautiful paths, constantly envisioning and planning but….

Little dove from a thousand and one stories…. who interrupted your path? I don’t often see your amazing characteristics anymore. I have been waiting for a long time for your visits, your song, your magical touch on the paper when you flap your wings. I’m tired of waiting and you have not returned. In my dreams I hear your singing, sad and confused but faint. In your stead someone else has arrived. It looks like you, but I look, and I look again and question if it’s you. And if it is you, you have come back hurt, hard to recognize and with a white feather on your head. Suddenly, I could see in your eyes a flame and I could see how your brain was engulfed by it. What is happening? I asked. I hugged you and I could enter an unknown world. I could see how you ran, and the fear took over you. I could see how your heartbeat desperately and all your organs were affected. You wanted to be in control of everything, but it was impossible. The uncontrollable movements did not leave you alone for a second. Everything was different. I could see how your shaking made it so that your color mixes and brush strokes went the opposite direction than what you desired. Your emotions were confusing, but no more description is necessary. Just by looking at you I could see how you fought so many obstacles trying to fight for yourself, but you couldn’t. I started to try to understand what you were going through but it was hard. Even through the unknown, I vowed to help you out of this situation. I looked at one of your legs, stiff and rigid. I tried to move them, and I found a two-letter message, A.E. It can’t be! That was my reaction, but I wasn’t afraid. When I finally understood it’s meaning, I understood your reality. Since that moment, I haven’t stopped fighting for you. I sheltered you with my faith and I declared with the love of a mother that the giver of your life you re-create each part of you. It would take some time, but so it has been.

I’ve flown with you to different places with hope. You have endured painful situations, but I see your scars starting to heal.

Today, I can see how my little giant, with scars all over your body and brain, has re-learned everything again. To me, this is not an obstacle but an opportunity to do it again, and better than the first time.

You get up and have problems walking. Sometimes you hurt yourself again, but we help you get back on your feet. Today, I see your feathers, hopes, dreams, courage, strength, and desire to live.

You are the paint for those that need art in their life. Your experience becomes the path to understanding for the new birds following you. Your strength motivates those that need it the most. Your life shows the entire world that there is no limit for human beings. It shows that starting again is an opportunity, that our differences are what makes us unique, that our weaknesses become strengths.

Strength! We are not alone. We are the best warriors and protagonists in this unknown world.

luz neira 500x359 - Through the Eyes of Mom

 

 

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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 - Through the Eyes of Mom

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.  

AE Warrior Store 300x200 - Through the Eyes of Mom 

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

 

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Falling through the looking glass…

Falling through the looking glass…


March 9, 2022 | by Rachael Muggleton

In May of 2020, I was a healthy, vibrant, smart, loving, pre-med student at Penn State, nicknamed the ‘mayor’ of my large friend network … until I fell acutely ill. Within 7 days of hospital admission, for what seemed like some type of stress induced altered mental status, I became catatonic. My mom watched in horror as her daughter’s light rapidly dimmed; losing a piece of what defined me each day. By day 7, I no longer spoke or appeared to recognize anyone, my heart rate became unstable, I could no longer walk or eat, and my kidneys began to fail. I was rushed to the University of Rochester Medical Center (URMC) with a preliminary diagnosis of Anti-NMDAr Autoimmune Encephalitis (AE) – an illness my family had never heard of, but one unfortunately they would get to know very well over the next six months of my horrific journey. 

IMG 5128 225x300 - Falling through the looking glass...Full disclosure — this part of my story comes from my mom; I don’t remember anything from my admission until fuzzy memories of my time in inpatient rehab 5 months later. By the time I reached URMC I was catatonic, seizures were starting to take over. My mother described the surreal experience as ‘seeing our beautiful Rachie rapidly falling through the AE ‘looking glass’ – a tumbling, bouncing, free fall which lasted for days, weeks, eventually resulting with me being placed on life support for months’. 

Timing is everything, right?! It was during COVID lockdown, visitation was not allowed. My family was no longer able to be by my side. For 42 days, physicians and nurses cared for me while in a medically induced coma; trying to quell the relentless seizures. My mom sat on the virtual sidelines, distraught, making decisions regarding PIC lines, arterial lines, sedation, feeding tubes and a tracheostomy – decisions she never imagined she’d be making for her child, who outside of a tonsillectomy, was the picture of health. Without the communication, compassion, trust and love I received from the URMC team, my mother said she wasn’t so sure she would have been able to get through those first 42 days. They were her eyes, ears, and most importantly, heart. 

IMG 5127 225x300 - Falling through the looking glass...When restrictions finally lifted and my parents were able to be by my side, they witnessed firsthand what a cruel, relentless illness AE was. There is no official playbook. My mom, a person who prefers order and predictability, was at a loss watching the team trying to control an illness that twisted and turned, never letting up. AE laughed at us and didn’t care how desperately we wanted it to release its grip. During this acute phase, one of my Neuro-intensivists explained his view on Anti-NMDAr AE (after treating a handful of cases each year) to my mom – ‘It comes out of nowhere, attacks HARD, stays as long as it pleases, eventually leaves, rarely returns. Our job is to treat Rachael with what we know works and keep her alive until it leaves”, and they did just that. I received steroids, plasma pheresis, IVIG, Rituxan and when things still seemed to be stalled, Cytoxan. I was also placed on a strict KETO diet, which in some pediatric patients has been proven effective in reducing/eliminating certain type of seizure activity. 

By mid-August of 2020, my mom tells me, “Our ‘Alice’ ended her free fall and SLOWLY started to reemerge!”. Day by day, small pieces of me started coming back. Eventually, the ICU staff took me out to the children’s garden at URMC (safety protocols in place (!)) to see my brother Andrew for the first time in 4 months (pictured)! 

My family and team celebrated each breath on my own, swallow of water, baby step, new word, and smile! When it was finally time to leave my nurturing Neuro-ICU ‘nest’, the team through me a dance party — sending me off to inpatient rehab in style! Since I have no memory of that time, I’m thankful it was recorded! Taylor Swift’s ‘Shake it Up’ will forever rock as my survival song 😊! 

IMG 5135 300x225 - Falling through the looking glass...

My dance party send off!

I was released from the hospital in October 2020, just short of 6 months. While my journey was far from over, I was on my way! I still needed to be weaned (carefully) from 8 different anti-seizure medications, regain my cognitive functions and physical strength and dexterity. Through the work of an amazing rehab team and sheer determination, I made my way back. By the summer of 2021, I was taking college calculus II and preparing for my college return in the fall. 

IMG 4404 225x300 - Falling through the looking glass...But here’s the best part of my story! In December 2021, I spent a week in the URMC Neuro-ICU, only this time NOT as a patient but rather to shadow the amazing physicians, nurses and professionals to learn firsthand the world of intensive care neurology. As a result of this shadowing, I’m sure they hope I choose Neurology as my specialty (maybe?!), but FAR more was gained from this experience! Rarely do providers, nurses, and staff get to see the results of their amazing efforts, and a recovered AE patient rarely gets to come back to see their heroes in action — Life came full circle. 

I finished my fall semester (Deans List!) and as I write this, and I’ve returned for my final semester at Penn State. I’ll begin studying for the MCATS with the goal of medical school in 2023 (maybe URMC?  😊). Autoimmune Encephalitis was a cruel thief who tried to steal me and subsequently a year of my life, but as the Mad Hatter said to Alice, ‘If you knew time as well as I do, you wouldn’t talk about wasting it’. I’m not about to waste it!! 

My mom reminds me often; I have a story to tell! I think it’s a story of a young woman falling through the looking glass — finding beauty, love, compassion, and competence all along her journey. However, her name isn’t Alice, it’s Rachael. 

Never. Lose. Hope ❤️. 

IMG 5129 300x225 - Falling through the looking glass...

August 2021, me, mom, and stepsister Kaitlyn 

 

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

guidestar platinum logo 300x300 1 e1605914935941 - Falling through the looking glass...

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 - Falling through the looking glass...

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.  

AE Warrior Store 300x200 - Falling through the looking glass... 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

 

The Episode

The Episode

November 25, 2021 | By Diane Wong

On this day of Thanksgiving in the US and in honor of Caregiver Awareness month, the staff at IAES wish all of you a blessed and thankful day!

We are honored to share with you a poem written by a very special caregiver of one of our members. The poem is written by Diane Wong, the mother of AE warrior Alanna Wong. This poem highlights the depth of love and despair caregivers feel on our behalf… Alanna’s AE went undiagnosed for many years until 2021.

She wishes to connect with others travelling this same path and shares her journey on Instagram @alanna_wong and on Facebook  @AlannaWongLife1

—————–

The Episode

 

Today my daughter lost her soul.

There is no emotion.

There is no understanding.

There is only sham rage.

A rage she does not control but

that controls her.

It is directed at me only because

I care for her.

If she were alone, it would be directed

at thin air.

I love her with my entire being.

 

Today my daughter sleeps.

The sleep is not restful.

The dream is a nightmare.

It lasts for days, or weeks, or months.

Life for her is lonely.

Life for her is cruel.

She is a prisoner in her own mind.

Can you imagine the torture she must endure?

I love her with my entire being.

Today my daughter is swollen.

Her face and eyes are puffy.

Her pupils are dilated.

Her sclera is yellow.

Her tongue is thickened.

Her body is bloated.

Her color is gray.

Her heart palpitates.

She cannot care for herself.

She is vacant.

She is distant.

She is unsure.

She wonders, “Am I dead or am I alive?”

“Is this real, or am I dreaming?”

Her short-term memory is destroyed.

Her relationships are destroyed.

Her life is destroyed.

I love her with my entire being.

Today my daughter asks, “Why was I put on this earth?”

She says, “I can’t do this anymore.”

“I don’t want to live.”

“I want to die.”

“I want peace.”

“I want to be in heaven with God.”

Tears roll down my face too!

I can’t answer her questions.

But I continue to give hope.

“It will get better,” I say

“It will go away one day.”

“You will live the life you desire and deserve.”

I love her with my entire being.

 

Today my daughter went for help.

The hospital staff makes assumptions.

How can the medical field not understand an organic illness in the

Brain is no different than an organic illness in the heart, or the

pancreas, or the lungs?

They ask, “Why are you here?”

“There is nothing we can do for you.”

Then they call social workers in.

If we’re lucky, my daughter won’t be committed.

I can care for her better than any psych ward.

What a shame!

I wonder why they’re even in the

business of helping people.

I go home to care for my daughter alone.

Isolated from the world.

I love her with my entire being.

Today my daughter begins life again.

Her soul returns.

She is young, maybe 3, maybe 5, maybe 10.

She’s cute and sweet.

She’s funny and mischievous.

She’s loving.

Her emotions return.

She can care for herself again.

She can read again.

She listens to music.

She is waking up from this long, awful nightmare.

I love her with my entire being.

Today I hear the words, “Mom, I’m awake.”

My sleeping beauty returns.

The words are bittersweet.

Sweet because we know she’s back with us again.

Sweet because she can live again.

Sweet because she can function again.

Bitter because she’s lost her memory.

Bitter because she lost more time.

Bitter because she lost herself.

Some memories come back in flashback form.

Which itself is torture.

In healing comes pain.

But we’ve already been through so much pain.

When will it end?

Maybe this will be the last one.

I love her with my entire being.

Happy Thanksgiving FB 500x419 - The Episode

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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 - The Episode

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.  

AE Warrior Store 300x200 - The Episode 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

 

The AE Goose Chase

The AE Goose Chase

December 9, 2020 | By Sherree Bargo

Larissa was born after a normal, healthy pregnancy on May 29, 2007. The next 5 years were seemingly “normal” as she hit all of her milestones on time and ahead of most of them. She was potty trained by 2, reading Dr. Seuss books by memory at 19 months! She was classic first child doing everything early. At 19 months after moving into our house where we would live the next 5 years in September 2008, I took her to her scheduled doctors appointment for her checkup and to get the scheduled vaccines. On the way home from the doctor Larissa projectile puked, which she had never done before. She was completely breastfed and had never even spit up. After checking her out she seemed fine and I blamed it on her drinking her bottle too fast in the hot car. The next 6 months she continued to vomit intermittently projectile and then would return to fine and playing every time. At age 2, after trying to cut back on her milk and other diet changes thinking it was something she was eating, I took her to her pediatrician about these vomiting spells. After Conducting some classic GI test he didn’t find anything but presumed it was some type of reflux and sent us on to a Gi specialist. She was 3 by the time we got into the GI specialist. All the while she was still progressing fine, growing, eating , playing ….The GI specialist conducted a few other tests over the next year and started her on ranitidine for a presumed ulcer and Prevacid for the puking to protect her esophagus.

In March of 2012 right before she was turning 5, she did a GI scope and found no ulcer, proceeded to order an MRI to check hormone secretions in her brain from her hormone glands since we noticed she was also breast budding and these vomiting spells seemed to by cyclic. Larissa would have days at this point where it seemed like a vertigo where she would be sick like the flu puking all day every time she would try to move another nauseous spell would hit. She never had a fever. Then like a light switch was flipped off she would wake up and be back to her normal self and only puking once or twice a day.

The MRI was conducted April 2012. The next morning at 6 am I will never forget that call. The G
I specialist called to tell me the findings of the MRI. I thought it was weird he was calling me himself and not a nurse. He told me there was a lesion in Larissa’s brain in the right temporal lobe and that sometimes when children vomit it is actually some type of seizure. Everything froze for me in that moment.  I cried.  I prayed. I couldn’t believe something so serious was going on with my baby.  I kept hoping this puking thing was something with an easy fix and nothing serious, but it was getting worse and I knew in the back of my mind something was not right. 

In May of 2012 Larissa was referred to a neurologist due to the MRI findings and the possibility of her having seizures. The neurologist immediately started her on trileptal just by our description of spells of nausea. 

In July of 2012 an overnight EEG was conducted in the hospital.  It identified that Larissa was having up to 20-30 seizures per hour! The seizures were the cause of her spells of nausea. The next year there were several hospital trips where she would be having these spells all day every day.  Aware that seizures were the cause, we would go back to the hospital. It seemed as if countless seizure medications were tried. She was put on phenobarbital (which she was allergic to), onfi, Keppra and Vimpat.  All had the same effect. They would help a little and then their effectiveness would wear off.  

The next year in March of 2013, after another hospital stay where her seizure frequency reached 30 per hour all day, no sleep barely eating, it was determined Larissa was a candidate for brain surgery. They told me she would have an 80% chance of being seizure free after surgery.  As scary as it was, I agreed. I wanted to do anything to help her get better. 

During this time Larissa was still able to thrive and play and progress. She loved swimming and going down the big slide at the Mooresville pool. She knew how to read and write. She loved the library and singing.  

The surgery was performed on June 28, 2013 and lasted 12 hours.  Afterward, the brain surgeon told us there was much more scar tissue than she had anticipated. She removed almost the entire tail of her amygdala and part of her hippocampus. Larissa recovered well. She was seemingly seizure free for about a month until episodes of nausea slowly crept back. She had started kindergarten in August and was one of the only kids in her class who could count to 100, write her name and read. Despite her intelligence, she had a lot of behavior problems and low attention span. She had an attention span of about a minute and would have a lot of outburst of pinching, biting or screaming or rolling around on the floor.  Because of her challenges, she was in the student support center a lot and was cut down to half day attendance. 

In October I noticed she would fumble with her pencil a lot. She was right handed but was using her left hand instead. I mentioned this to the neurologist thinking it might be some type of brain dominance issue since her surgery. They didn’t know. By December 2013 I figured out why she was dropping her pencil. She had a twitch in her right hand and foot.  Every few seconds they would twitch, which also caused her walking gait to be out of alinement as her right foot was thrown outward. 

After 6 months, and with no new findings of seizure activity on a comparative EEG, and having weaned her onfi, to eliminate the possibility that she had developed a movement disorder caused by the medication, the neurologist thought her movements were “behavioral”. Larissa’s twitching had escalated to such a point that she wasn’t able to walk or eat anymore. Her condition was so severe she had to be pulled around in a wagon at school. By May 2014 they decided it was no longer safe for her to attend school. One year almost to the day of her brain surgery, in July of 2014, she was admitted to the hospital once more.  It was during this hospital admission another EEG was performed that found she was having a constant partial seizure coming from the left side of her brain now.

Before her surgery the previous year, after several tests, I was assured that there was NOTHING on her left side and no seizures coming from there. This was why they had such high confidence the surgery would be successful.  They were WRONG. She was now having the same type of seizures, and much worse coming from the left side of her brain. Whatever the cause, it had progressed.  One of her neurologists thought her condition was caused by brain inflammation of some sort and mentioned autoimmune epilepsy. He started her on Solumedrol and IVIG in late 2014.

She experienced great improvement after her first IVIG treatment. She went from spending a great deal of time in a stroller to coming home and playing and jumping on the trampoline. It seemed the IVIG was a magic cure. but it was short lived.  Larissa’s seizures came back the next day.  Larissa continued IVIG with solumedrol pulses for the next 6 months. She had hit a plateau.  She wasn’t declining. She was walking but was still having daily seizures. At this point her treating neurologist felt he needed to be seen by a specialist as she felt Larissa’s case was beyond her expertise.

The new neurologist immediate stopped the IVIG feeling it wasn’t warranted. She questioned the treatment with a laugh in her voice indicating she felt it was not medically necessary.  June 2015 was her last IVIG treatment.  After stopping IVIG, a VNS was placed in August of 2015. In October of 2015 a swallow study was conducted and confirmed she was aspirating when she drank or ate. A g-tube was then placed.  The g-tube was so hard on my little girl. She loved to eat. As a parent, I was beyond frustrated in trying to get my child healthy.  

By 2017 her health declined, and her education suffered because of it.  She was now behind her classmates. While she was able to retain learned skills from kindergarten she was not able learn anything new. In hindsight I wonder if the IVIG had been continued, would she have had this downhill slide? It was such a slippery slow slope.  I didn’t connect the two until I was able to look back over time.  She was having 20-40 seizures a day.  Her doctor would adjust her seizure medication or try another medication trying to find the right combination that could arrest them.  One of her neurologist’s considered “presumed Rasmussen encephalitis” as a differential diagnosis in her chart noting she “didn’t know what else it could be”.  She explained to me that the treatment for Rasmussens was removal of the half of the brain affected and Larissa had already had surgery on the other side, so she was just stuck basically. We were told there was no treatment. It is what it is. All we could do was try to manage her seizures with seizure medications.

All the while I kept asking her what else it could be because the hallmark with Rasmussen’s encephalitis is atrophy on the side of brain affected, and this had been going on for years and she had no atrophy.  She would again tell me there was nothing else it could be! 

Finally, in November of 2017 I requested a referral for Larissa to be seen by a neurologist, Dr. Grenier at Cincinnati Children’s Hospital, who specialized in treating Rasmussen’s patients.  In March we received confirmation that it was not Rasmussen’s. Dr. Grenier explained that her MRI finding showed she should still be walking. He noted brain inflammation on both sides of her brain on the MRI done prior to her surgery in 2012 and felt that the surgery had been unwarranted. While it didn’t hurt her or cause anything to worsen, he felt based on her MRI that the surgery would not have been beneficial. He was determined to arrive at an accurate diagnosis. He ruled out mitochondira disorders and genetic disorders and ordered antibody testing that were sent off to the Mayo Clinic.

On May 8th, 2018, ten years after our journey began, we found out what was wrong with our daughter. It was treatable. She had Anna-1 autoimmune encephalitis. Larissa was admitted into the hospital for what would be a 6 week stay. Anna-1 has a cancer association. All testing for cancer was negative. They started her on 10 rounds of plasmapheresis. Her MRI showed that there was no brain cell death. So, if we can get the inflammation down, she would regain full movement in her right and walk again.  We noticed some improvements with the plex (plasmapharesis), her next treatment was Cytoxan, a chemotherapy treatment that can impact the inside of the brain cell where they Anna-1 antibody had taken up residence.  She received her first round of 6 Cytoxan treatments in the hospital before finally coming home. After each treatment we noticed positive improvement. Her seizures were less frequent, and she was more alert.   

Each Cytoxan infusion required an overnight hospital stay.

Our journey had taken us to many different types of doctors. Now we were with doctors who specialized in autoimmune neurology. To date, when I asked what could cause her AE, I was met with an unclear answer. Infections and tumors where the only thing known to cause antibody mediated AE per the research up until that point. The doctor who was treating Larissa at the time was relocating and referred us to Dr. Michael Sweeney in Louisville, who happens to be on the Medical Advisory Board of IAES.

At our first appointment, Dr. Sweeney said he had been studying Larissa’s chart trying to figure out what could have triggered her disease process.  He felt it was a vaccine reaction. He went on to tell me about a whole vaccine court set up for people like Larissa and that it is fairly easy to file and that I should file a claim for Larissa. I tried and there is a 3 year time limit from the time the vaccine is given, even if it takes years to get the correct diagnosis. He also started seeing my younger daughter Layla who has autism and determined her “autism” was caused by her vaccines that can cause encephalomyelitis followed by onset of regression. ADEM is a type of AE that has a known trigger of vaccination.  He has given both of my daughters medical vaccine exemptions. Due to a family vulnerability, and this is specific to my children, so please don’t jump to any conclusions, both Dr. Sweeney and our pediatrician agree that in their circumstances vaccines should be avoided.

After Cytoxan, Larissa underwent tocilizumab infusions. We continued noticing improvement. After 6 months of treatment Larissa was moved to  an actemra pen.  An injection I can do for her at home every 2 weeks. In November 2019 IVIG added because she seemed to have plateaued with tocilizumab.

Larissa has continued to improve. When her school saw her on a zoom conference call last March they were ecstatic at how alert and physically strong she was. She still has a ways to go. She is not yet walking or able to color with either hand.  We can have IVIG home infusions monthly, with a home infusion nurse attending. 

It has been a long journey.  I had a dream recently.  I was on the phone telling Dr. Sweeney that I was concerned because Larissa wasn’t walking yet. Upon hearing my end of the conversation, Larissa got up off the coach and began walking around the house smiling proudly. “Look at me!” She called out with joy! I take my dream as a divine motivation to never give up hope. What seems to be the impossible will be possible.

Larissa Sherree Bargo Daughter 2 - The AE Goose Chase

My daughter Larissa has Anna-1 antibody positive autoimmune encephalitis and is now 13 years old.

 

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

guidestar platinum logo 300x300 1 e1605914935941 - The AE Goose Chase

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 - The AE Goose Chase

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 - The AE Goose Chase

 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

Larissa Sherree Bargo Daughter 1 rotated - The AE Goose Chase
Giving Thanks!

Giving Thanks!

November 26, 2020 | By Jeri Gore

I have often pondered over this day throughout my life. From being with loads of family laughing over a huge turkey dinner and all the talk and smiles and analyzing whose stuffing is best and simply being together. To being away at college or jobs that have carried us off and unable to return home for Turkey day. I have thought about those with less and those with more. Those with illness and those in seemingly perfect health. Always and I mean every single time I have found thanks. This is not to say, I have not felt a twinge of ‘wow, where am I now’ but true and honest thanks because at every turn I have learned something, and I am grateful for it. I like to separate the word Thanksgiving to Thanks and Giving.

This has been a year like no other. This can be said for each year I realize, and many many generations have crossed bridges and had years they can say this for. For us, at this point in time, this has been a year of highs and lows like I, for one, have never seen or heard.

I would like to Give Thanks to all of you at IAES. I am an AE Warrior and have newly been introduced to a group of people across the continent and globe that have had a hand in helping me get to this place where I am this year. This organization has helped not only me but my family, loved ones and caregivers. I want to say and give thanks to IAES. Thanks for your guidance, virtual smiles, endless conversations (at all hours) with my husband regarding ‘what the hell is happening to Jeri’ and offering to simply be there at every turn. From my heart, THANK YOU all! There are many others that feel this same way.  I have the distinct honor to express the feelings of many here. Happy happy Thanks and Giving…..

~Jeri Gore

Thanksgiving 2020 500x419 - Giving Thanks!

 

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

guidestar platinum logo 300x300 1 e1605914935941 - Giving Thanks!

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 - Giving Thanks!

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 - Giving Thanks!

 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

Caregiver Tribute

Caregiver Tribute

November 25, 2020 | From the IAES Community

IAES wishes to honor all those caregivers that have not only loved, helped and never given up on all those with any form of AE but who have also helped all those suffering or have suffered from all forms of illness! Below are some thoughts and writings from both caregivers and those who wish to thank the many caregivers who have helped them.

We honor all of you….

——–

This is from my experience as a person with AE receiving care | By Mari Wagner Davis

As a person with autoimmune encephalitis, I woke up not knowing what had happened to me. I had to ask my husband, Geoff, what had happened. 

Despite my having a brain injury and forgetting so much of the last six years, his answer to me when I say, “I got so stupid,” is “You’re not stupid, you just forgot some things.” He’s had to figure out bank accounts, paying bills, our children’s college loans – well, you name it. Never during this time has he complained; instead, he has done his most to make me feel as capable as possible. Sometimes, it wasn’t much; other times we had a lot to celebrate, such as when I passed a special driver’s test, and most recently when I finished reading my first book in four years. He has been thoughtful and the best caregiver while still trying to allow me to do as much as I possibly can.

The life of a caregiver is not easy. They balance their own schedules with our needs. They balance concern with encouragement. They balance their own time with time for the things we need. They squeeze in time for our appointments, meds, questions, all without ever letting us know that their time is squeezed.

One thing I know is that the life of caregiver is one born out of love; no one would ever do all that they do except for love.

~Mari Wagner

My Life as a Caretaker | By Timothy Crossley

Being a teenager while juggling school and caring for my mother has its stresses. It’s hard for me to find her lying on the floor, seizing. I keep my schoolwork done at school so that when I’m at home I can keep an eye on my mother. I’m always asking how she’s feeling.

That’s my life as a caregiver.

~Timothy Crossley

Caregiver Tribute| By Linda Lowther and Amy Crane

I was having tremors and a very unsteady gait for about five months. I had been misdiagnosed by a neurologist with early-onset Parkinson’s disease. But as a nurse for 20 years, I knew something more was going on. One day in March 2015, I woke up and told my husband that I thought I was getting the flu and felt ill, so I called my manager to say I wouldn’t be in for work. That night when my husband returned home, I was unconscious and couldn’t be woken up. He called an ambulance and then called my sister. She then called my parents and brother, and all came to see me at the hospital. I was on a ventilator – I was unable to breathe on my own and was in a coma for two weeks.

I was then sent to a rehab hospital for over a month. I had to learn how to walk, talk, eat, write and spell all over again. My husband had told the MDs at the rehab facility that my parents had to take care of me. So, my parents had me move in with them to my childhood home. They took care of me because mentally I wasn’t able to do much for myself. They worked with me on word searches to help me improve my memory and so on.  My sister came to see me almost every night and would help to give me baths when I couldn’t do much for myself. This went on for over four years until I was well enough to drive and live on my own again.

If it wasn’t for what my parents did, such as my mom talking with me, singing with me and helping me, I truly would not be where I am today.  And my sister with her many sleepovers and sisterly talks helped me so much.  My mom and sister also helped me deal with my divorce when my husband filed for divorce after I was well enough to understand, something that was really hard on me mentally and physically.

I’m so grateful for my mom and sister for being the best caregivers ever. I love you with all my heart and I thank you for all you’ve done for me every single day, even up until today. I would not be where I’m at if it wasn’t for you, your love and support. Your caring hands enabled me to get well enough so that I am buying a newer, smaller home which I am very excited about! I truly cannot thank you two enough for all you have done for me and that you continue to do on a daily basis. I truly would not be where I’m at today without you. Love you mom.

~Linda Lowther and Amy Crane

Strength in the Storm and Beyond | By Tabitha Orth

Each case of autoimmune encephalitis claims many victims. While the focus is centered on the AE patient, it is the family caregivers who are the unsung heroes in every case.  Like a level 5 tornado, AE descends.  The routine calm of our daily lives is left in tatters from the torrent of destruction that struck out of nowhere.  What is left is not recognizable to what was just a short time before. 

It is the family caregiver – our spouse, parents, family members and partners – who are thrown into this traumatic, life-threatening upheaval and left to navigate the course of our care. While in shock, they must learn to navigate the medical complex, find an expert in the field of autoimmune neurology, understand the disease and its treatments, advocate for our best interests and keep a sense of normalcy going at home. Often, the patient is their confidant, so they are alone in making decisions and put their own losses, pain and suffering aside to care for us. They don’t voice their fears to us because we are not capable of answering their concerns. Their bravery, sacrifice and determination, all fueled by their unwavering love and devotion, propel them forward through the eye of the storm.

How do we say, “Thank you?” What do you say to the person who saved your life, shouldered the pain, worries and responsibilities all on their own with no concern for their own wellbeing?  They nurture us. They encourage us. They keep us safe through the process of our battle with AE.  Our caregiver has always been center stage in helping us reach recovery through our rehabilitation efforts, while shouldering that immense burden in silence.

I am here because my husband made sure I would survive and thrive. I am here because my son has always shown me patience, love and guidance.  The sacrifices they have made in order to do all the heavy lifting, pouring all their energy into my health and wellbeing, is why I am here today. 

November is National Family Caregiver Month. Please join me in shining a light on the unsung heroes of our AE journeys.  Without them we would not be where we are today.  With all that I am and all that I have, I thank each one of you. Thank you.

~Tabitha Orth,

President and Co-founder,

International Autoimmune Encephalitis Society

——–

We hope you find the following articles for caregivers helpful!

Disability & Health Information for Family Caregivers | Article from the Centers for Disease Control and Prevention

Caregiving can be stressful no matter how much you love your family member. Autoimmune Encephalitis is often a disease that takes time to recover from and some individuals will continue to have ongoing disabilities that does not mean that they cannot have a fulfilling life. Adjusting to what life used to be or look like requires time for both the person with AE and their family members. This article talks about how caregivers can care for themselves.

Neuropsychiatric symptoms and caregivers’ distress in anti-N-methyl-D-aspartate receptor encephalitis | Research published from the Chinese Academy of Medical Sciences and Peking Union Medical College

This journal article, published in September 2020, found that patients with anti NMDAR encephalitis often present severe neuropsychiatric symptoms, which aggravate the burden on caregivers. Immunotherapy significantly improves neuropsychiatric symptoms, and thus reduces the distress of caregivers.

FDA Listening Session: Discussion on living with a rare disease during the pandemic | Video from the National Organization for Rare Disorders (NORD)

National Organization for Rare Disorders (NORD) and FDA co-hosted a virtual “listening session,” during which the rare disease community had the opportunity to share their experience living with a rare disease in the pandemic and submit questions in advance directly to FDA staff. Listening sessions are meant to facilitate expeditious sharing of patient and advocate perspectives on how their disease and treatments affect their lives.

ABLE Accounts | Financial resource 

For disabled individuals or families caring for a person with a disability, an Able account allows you to save money to provide care without being taxed on it. This can include medications, therapy, food, housing and other disability needs. The Able Act currently only applies to those who become disabled before the age of 26. This article explains much more about Able accounts. Able accounts are provided by more than one provider, so one should look at the rules and how each works to find the best for you.

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Looking for a gift for your caregiver? Show your appreciation with an gift from the AE Warrior Store:

AE Warrior Caregiver 297x300 - Caregiver Tributeback of long sleeve t shirt 252x300 - Caregiver Tribute

 

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

guidestar platinum logo 300x300 1 e1605914935941 - Caregiver Tribute

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

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

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

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

Sally Birch holding Moms hand 230x300 - Caregiver Stress and Burnout. Tips for Regaining Your Energy, Optimism, and HopeThe 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.

Cara Arnold daughter Gracie 3 225x300 - Caregiver Stress and Burnout. Tips for Regaining Your Energy, Optimism, and Hope

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

exercise 300x200 - Caregiver Stress and Burnout. Tips for Regaining Your Energy, Optimism, and HopeThink 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.

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