IVIG Side Effects: When to Seek Medical Attention

by Alanna | Aug 8, 2023 | Special Series

August 8, 2023 | By Cindy Berry, RN, BSN. Reprinted with permission from IG Living

Introduction from the IAES Blog Team:

It is with great pleasure that IAES presents to you an article reprinted with permission by IG Living Magazine.

The IG (or Immune Globulin) community not only produces an online magazine but also a podcast and offers other resources for all those taking IG, interested in having IG as a part of their medication regime and for all those interested in IG in general. For further resources from IG Living feel free to peruse at their content at: https://www.igliving.com/magazine/subscribe.aspx

For many AE Warriors, IVIG is a staple in our treatment toolbox.

IVIG infusions are something most with AE have had at one time or another as a treatment option.

Many with AE, our caregivers and loved ones have been curious about the possible side effects of IVIG. What should we expect, how concerned should we be, when to seek medical intervention? IG Living has done a wonderful job in answering many of our IVIG side effects questions. We hope you gain as much information as we have, and we thank IG Living for let us republish this wonderful article.

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This IGL blog is sponsored by NuFACTOR Specialty Pharmacy.

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

It’s necessary to take measures to minimize side effects when receiving IG therapy . These measures include staying well-hydrated, taking pre-medications as ordered and listening to your body. But, even when diligently taking these measures, unexpected side effects sometimes occur. With the exception of anaphylaxis, most of these side effects generally occur after an infusion, and they are usually considered either moderate or severe. In every instance, they need to be evaluated by a physician, and in some cases, medical intervention is necessary.

Moderate side effects are those that usually affect your daily activities such as going to work, sleeping well, eating and even showering. The most common reported moderate side effect is a headache lasting more than 24 hours with a pain rate of 6 to 8 on a scale of 1 to 10. This means taking medications such as Tylenol or Advil does not help alleviate symptoms. Sometimes, this headache can progress into a more serious headache called aseptic meningitis.

Aseptic meningitis occurs when the IG drug has caused irritation of the meninges in the brain, resulting in symptoms that present like meningitis. This unexpected side effect can occur during an infusion or after an infusion. Patients experience an excruciating headache, as well as neck pain and stiffness, and generally, patients will have severe sensitivity to light. Vomiting is also very common. If these symptoms present, the patient should go to the emergency room for evaluation. Usually, IV hydration, IV steroids, IV antiemetics and IV pain medication are given to help alleviate symptoms. With proper medical intervention, patients usually feel better within 24 to 48 hours.

Renal dysfunction is another unexpected side effect that can be caused by IG therapy. This side effect is more common in patients who are over the age of 65, and who have pre-existing conditions such as hypertension and diabetes. Patients should pay particular attention to any changes in urination, including color changes (dark or amber colored urine can signify a change in kidney function) and a decrease in urine output. If either or both symptoms are experienced, a physician should be notified, and the patient should be evaluated immediately. Since renal dysfunction is a potential serious adverse event, it is important to have periodic renal testing, which is easily accomplished with blood work ordered by a physician.

Thrombolytic events, or clot formation, have been reported in very few cases. Although this is a very uncommon side effect, it is important to be aware of the signs and symptoms. Patients at greatest risk include those with a history of thrombotic events, history of diabetes, advanced age, multiple cardiovascular risk factors, impaired cardiac output and long periods of immobilization. If a clot is formed, this usually occurs after an infusion. Symptoms of a possible thrombolytic event include severe chest pain and difficulty breathing, which could be an indication of a pulmonary embolism or possible myocardial infarction. If severe chest pain is experienced at any time, immediate attention is needed, and 911 should be called.

The final, most serious side effect that is unlikely to occur is anaphylaxis. It is the least-likely serious side effect that can occur. Anaphylaxis usually occurs within the first 15 to 30 minutes of an infusion. It is characterized by a sudden onset of any of the following symptoms: difficulty breathing (chest tightness, bronchospasms, wheezing), changes in the gastrointestinal system (severe cramps, vomiting, diarrhea), cardiovascular changes (low pulse rate, high pule rate, hypotension/shock, chest pain) or skin changes (hives, angioedema, rash). If anaphylaxis is suspected, 911 should be called immediately. If it occurs during your infusion, your nurse will administer emergency medications to help control the symptoms. Medical attention is required and necessary, and 911 should be called despite the administration of emergency medications.

Although the list of unexpected side effects may seem scary, it is important to remember that while most patients will experience mild side effects, they do not typically experience serious ones. In any event, it is always important to understand them and to have your physician’s number ready. Always inform your healthcare team of any changes in response to IG therapy.

Immune Globulin Therapy Side Effects When receiving IG therapy – either by IV administration or subcutaneous administration, it is important to understand the difference between side effects that are expected and side effects that are not expected. Since side effects may have an onset after drug administration, it is important for the patient and/or caregiver to identify when to seek medical attention.

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

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

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store! This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.

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

A Mighty Miracle

by Alanna | Jul 26, 2023 | AE Warrior Personal Stories

July 26, 2023 | By Rebecca Jablon

Introduction from the IAES Blog Team:

It is our honor and pleasure to bring to you the story of a young boy’s journey into the uncertain and terrifying world of being diagnosed with Autoimmune Encephalitis from the heart of a mother. A mother who thru faith, resilience, determination and, above all, love found help across the miles and a fierce desire to assist others and raise awareness!

——-

Whether you are a parent or grandparent to a child who has been thrown into the world of autoimmune encephalitis, or into the world of rare disabilities ( or a physician, therapist, special education teacher, or social worker…) I was moved to publish my story “To Add a Miracle” to provide you with further insight and strength. I wrote with absolute candor and honesty, sprinkled with a bit of humor, in an attempt to accurately portray the emotional rollercoaster that we have experienced.

Our son, Yehuda’s, steep fall into the world of autoimmune encephalitis began just days after the holiday of Hanukkah, the Holiday of Miracles, four- years ago, at the age of five. He was born just days before the Holiday of Hanukkah. As I approached the Hanukkah season this year and Yehuda’s ninth birthday, I suddenly felt a strong drive to sit down. And to write. And to write more. Perhaps this is not a coincidence.

At the beginning of our journey/ FALL into the unknown, the International Autoimmune Encephalitis Society stood as one of the lights illuminating our absolute confusion and darkness. The brave volunteers, often facing current or past struggles of their own, held out lights of information, direction, medical advice, and most importantly glimmers of hope, for a family struggling far away in Israel, where knowledge of autoimmune encephalitis in the medical world is even more limited. At the time, I was able to connect with only one mother living here in Israel, who was able to hold my hand and guide me on our journey. I gathered additional armor and strength from the mothers whom I could reach out to through the AE website. I was ready to grab onto anything and anyone who understood. I was desperate. Who or What had overnight stolen our son’s words, skills, and identity?

How can a mother accept an unknown or rare diagnosis?

How can she grapple with an experimental and even further unknown treatment plan?

How can a mother not throw up her hands in total despair when top neurologists eventually throw up their hands?

How can she survive when she screams out, yet no one can answer,

“What suddenly happened to my five- year old son?”

While many books have been written highlighting the challenges of raising a child with disabilities, as you all are painfully aware, autoimmune encephalitis is a recently discovered and often misunderstood illness with a shocking onset. My writing of To Add a Miracle was fueled by my intense desire to spread awareness and hope, to strengthen mothers, fathers, and families, as they bravely journey toward recovery or increased acceptance and strength.

I will never forget when my then five-year-old Yehuda desperately called out to me as I left his bedroom one night, marking the beginning of our descent into the unknown,

“Imma (Hebrew for Mother), my brain is broken. If I die, will you…”

Total confusion, darkness, and piles of despair. I wish that at the sudden onset of Yehuda’s illness, I had known about, and did not have to wait to discover the collective voices of the International Autoimmune Encephalitis Society, to call out to me, and to hear my cries… to help me to not feel totally alone in my struggles.

It is my hope and prayer that my book will provide you with an additional dose of strength in order to navigate the bumpy ride, that is our lives with special needs children. It is my dream to be able to continue to help other parents, using all of the tools, both medical and sometimes emotional, that I have gathered upon our journey with Yehuda. As I describe in the book, there is nothing that gives me more comfort than seeing another child and family progress and advance, even if that particular treatment did not advance Yehuda.

Someone recently asked me, “So what do you mean by adding a miracle?” Please order and delve into my book to find out. There is no quick answer.

Thank you to all of the administrators and volunteers of the International Autoimmune Encephalitis Society, for allowing me to take part in their holy work in my attempt to spread awareness of autoimmune encephalitis, through the writing of my book.

To Add A Miracle on Amazon

Book Description:

To Add A Miracle details with raw honesty, sprinkled with moments of humor and laughter, the dark and light shadows of the Jablon family’s journey; the story also highlights the tremendous strength of Yehuda’s siblings and selected “messengers of miracles” along the way.

With no filters, the story tells the author’s emotional journey as a mother in distress, facing piles of despair, culminating in a greater acceptance of the unacceptable, and a powerful recognition of the miracles that Yehuda has added to her family’s life.

While many books have been written highlighting the challenges of raising a child with disabilities, autoimmune encephalitis is a recently discovered and often misunderstood illness with a shocking onset.

The writing of To Add A Miracle was fueled by the author’s intense desire to spread awareness and hope, to strengthen mothers, fathers, families, and medical practitioners, as they bravely journey toward recovery or increased acceptance and strength.

Rebecca Jablon, the author of To Add A Miracle, tells the story of her sudden and dramatic fall into the world of autoimmune encephalitis, and resulting diagnosis of autism for her son, Yehuda.

How can a mother accept an unknown or rare diagnosis?
How can she grapple with an experimental and even further unknown treatment plan?
How can a mother not throw up her hands in total despair when top neurologists eventually throw up their hands?
How can she survive when she screams out, yet no one can answer, “What suddenly happened, overnight, to my five-year-old son?!!”

No stranger to the world of rare illnesses, Yehuda’s sudden overnight descent into the unknown rocked the author’s family. Who or What had stolen her son’s words, skills, and identity?

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

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

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

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store! This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.

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

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

by Alanna | Jun 27, 2023 | AE Warrior Personal Stories

June 28, 2023 | By M Ledferd

Introduction from the IAES Blog Team:

The staff at IAES brings to you the inspirational thoughts and feelings of a mighty AE Warrior shortly after his AE journey began. M Ledferd has put into words with heartfelt elegance the way we have all felt at one point or another on our journey. His gift with prose has brought to life our deepest feelings and resonated with our hearts and minds. We hope you enjoy this as much as we have! Thank you M!

——-

For those AE survivors, let gratitude carry us. For the caretakers, bless you. For those still struggling, please keep fighting the good fight. We are all here for you.

When I first awoke in the hospital, I felt like a 90-year-old man. A weak, tired old man with no autonomy. A man that could barely move or speak. A man at the end of his life.

Coming in and out of consciousness, I had a lot to think about. (Because I had nothing else to do.)

I realized that people generally saw their lives in stages: a beginning, middle and end. With a middle age that seemed to go on forever. That’s because we have no idea when the end is near. It’s hard to gauge and probably doesn’t even exist in most people’s minds. We simply can’t fathom it. It’s so unknown and far away. But as sure as the sky is blue it eventually reaches us all.

We’re all so different yet all the same. We go from rambunctious, fearless little kids with endless curiosities, to busy, hard-working adults, generating income so that hopefully one day we can retire, where the hours stretch on for days (just like it did when we were little kids).

In retirement, we are sold that we can do anything we want. From reading books to painting, to just chilling on the beach, or seeing the world by cruise ship, or just slow swinging on a porch with an old cat in our lap. I dunno, it’s different for everyone. What I do know is that I had obviously miscalculated a long middle for a short end. Crazy how that happens.

Laying there, motionless, with the chirps and beeps of hospital equipment, the days and nights blurred together. I didn’t know what day it was. But it didn’t matter as time had no relevance. I realized I has spent so much of my life working hard and saving up for a future that would never come. I felt stupid. Decades of grinding, all for what.

I tried to stay positive. To look on the bright side of things. To reflect. I had my fair share of adventures and vacations. My fair share of accomplishments, of friendships. I once took a 3-month solo motorcycle trip across the USA (remember that?). Damn, that was cool.

I got to see the world and was even beginning a new family with my wonderful spouse. I regretted not being able to raise my daughter until she was at least 20. Let me live another 20 years, I said, so I can instill in her self-reliance, self-discipline, curiosity, and grit. To let her know that anything is possible. But I knew that all would eventually be ok. My wife is a warrior with a great big supportive family. And I mean, there’s nothing I can do about it now.

I had a lot of feelings but above all I was calm and grateful. I was grateful I got to experience most of what life had to offer. The exciting parts. The sad parts. The whole gamut of human experience from birth to baby—which is more than anyone is guaranteed. Being in that dark, desolate place in my mind. That place where I had no external voice, I still had gratitude. But it was a resigned gratitude. One with plenty of I-couldas, I-wouldas, and I shouldas.

Coming back into consciousness, hearing the same high-pitched, rhythmic beeping from the heart-monitoring machine, I knew I had been there for a very long time. I felt like I wasn’t getting any better. Every day was just like the last. Groundhog Day. I felt like, maybe, I would be in the hospital forever in that state. Even if I hadn’t died I felt like a ghost. To be seen but not to see. To be touched but not to touch. A fly on the wall of a busy hospital with ears instead of eyes. A vegetable frozen in time, with tubes and wires coming out of everywhere.

Then just like that, like some kind of reverse “Benjamin Button” disease, I was blasted back into reality, back to my 40-year-old body. I had aches and pains all over, shed a lot of tears, but, damn, it felt good to sit up on my own, to just breathe again. It had been 23 days, with 16 of them in the ICU. I would spend the next 11 days relearning everything. How to walk. How old my daughter was. How to use my phone. But I was back.

Today (April 12, 2023) marks the 100th day of leaving the hospital. Though I’ve been back probably half a dozen times since, they have all been for check-ups, bone density scans, MRI’s, physical therapy, and all ending with my favorite part—going home.

I am not sure what the point of this post is. I guess it’s for you to envision yourself where I was. A dead man with no future, with the woulda, coulda, shouldas. To put yourself there and see if you would change anything when you were granted your wish. To realize that most everything that stresses you out right now probably doesn’t even matter.

You’re alive, you’re breathing, and growing older is a privilege. Don’t waste it with your head down.

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

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

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

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store! This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.

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

Your Potential Self is Infinite

by Alanna | May 30, 2023 | AE Warrior Personal Stories

May 31, 2023 | By Lisa Lauter. Reposted with permission from Lisa Lauter Journey to Health

A message from IAES Blog Staff:

The entire staff at IAES is very excited to share with all of you a blog published by one of our own members from her own website.

This is an anniversary blog of sorts. Almost 4 years ago to the day IAES published the first blog about Lisa that includes a video clip regarding her AE(LGI1) diagnosis and journey.

Four fast and eventful years have passed. Lisa is doing well along her AE journey, has had her share of ups and downs, has moved, has an active website and has written a book published that is soon to launch. Please feel free to follow Lisa, read her blogs and celebrate her book launch @ https://www.lisalauter.com/

———

Life is Marked by Journeys

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

The Shady Ladies

I have a group chat with a circle of women who are some of my closest friends. We call ourselves the Shady Ladies – sounds a lot more dodgy than it is. We support each other daily by giving random advice on everything from politics, to fashion, to children, to aging parents, to what the heck should I make for dinner. They are my tribe and they got me through some really dark days. When helping me decide what to write today, one of them said write about “how to cope with multiple projects without losing your mind!” (There may have been a well placed expletive in that sentence). I immediately chirped back, “great idea, but you’re assuming I haven’t lost mine yet!”. Another one said, use a couple of inspirational quotes – the kind you get on tea bags! Hence, today’s blog.

Pace Yourself

If you’ve been following me for a few months, you know that I had a setback recently that threw me for a loop, bringing back symptoms of numbness, tingling and gait changes, and slowing down my cognitive function. It reminded me of the importance of listening to my body and giving it what it needs (sleep, good nutrition, positive mindset, exercise), and learning that sometimes, something’s gotta give.

But here we are! Almost at the finish line and about to move into our new home. The busy-ness isn’t over yet. We still have to move out of the rental we’ve been in for three years, and unpack a truck load worth of stuff and memories that have been in storage all this time. (Pace yourself, Lisa, make space for the daily walks and meditation, eat well and rest.)

Taking Chances

Sometimes you have to take chances to realize dreams. Like my journey to health, we put one step in front of the other, made a ton of lists, and day-by-day checked things off. Sometimes I don’t know how I did it. My camera reel is full of screen shot reminders and my desk and kitchen are plastered with sticky notes and endless lists. Sure, we make mistakes along the way and it’s not always easy, but we try to laugh and remember the big picture. It may sound cliché, but don’t sweat the small stuff. Keep your eye on the prize and have another cup of tea (herbal of course). You never know where you might end up.

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

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store! This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.

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

Why are brain injuries so misunderstood?

by Alanna | May 24, 2023 | AE Warrior Personal Stories

May 24, 2023 | By Emerson Jane Browne. Reposted with permission from Dancing Upside Down

A message from IAES Blog Staff:

The staff at IAES is excited to bring to you a blog from author Emerson Jane Browne.

Emerson, a traumatic brain injury (TBI) survivor herself, wrote this very insightful blog about a subject we have all wondered about and tried to understand. Why are brain injuries so complex and misunderstood? We hope you enjoy her insight and thoughts as much as we have.

To find out more about Emerson please visit her website ‘Dancing Upside Down’ at https://www.dancingupsidedown.com/.

——

Why are brain injuries so misunderstood?

We’ve all heard it. “What the heck? You look fine to me!”

Or “It’s been months! Get over this brain injury stuff! Move on already!”

#1 Blame it on Hollywood!

Movies and television have spread so much misinformation about brain injuries it is practically criminal!!

Hollywood has convinced people that if you have a brain injury you have to look it! You have to drag one foot, or have speech problems, or in some manner “look” disabled.

Nothing could be further from the truth! The majority of brain injuries are not visible at all. You try to express how much you are struggling and the response is “You look great!”

And that is the second reason:

#2 You do look great! You look normal.

People are used to thinking of injury in terms of a broken bone. Subconsciously they are looking for the cast, the bandage . . . the visual evidence of your injury. And you don’t have it so their brains draw the conclusion that you must not be injured.

The interesting thing about this, is it is an automatic processing in their own brain and they are not even aware of it.

For example, we learn very early in our life to equate a glowing red burner or flame on a stove as “Hot”. We learn it so well that it becomes automatic. Each time you see a stove you do not laboriously have to think through or reason out that a glowing burner means hot.

The exact same thing is going on in people’s heads in relation to equating injury with visual cues. Their brains have learned to equate the lack of obvious signs of injury with “non-injured”.

And that leads right into the third reason that brain injuries are so misunderstood:

#3 Brains control everything about us!

Until a person’s brain is injured, we do not realize how much we took our brain for granted.

All the little automatic things – from knowing how to add two numbers to knowing what a paintbrush is for or how to read, or when you get to the store remembering to look at a grocery list you just made . . . All the even more important things like who we are, our own sense of identity, the “me” that you have always counted on from the inside . . . all of that is automatic … until it no longer is.

It is dreadfully hard to explain that to someone who has not experienced it because they really don’t get that our brains are essentially us.

Since you still look like you and sound like you, it is extremely hard for another person to grasp how deeply you feel and know you are no longer the you that you were.

And it is even more difficult for someone to grasp how big of a deal that is, and how lost you feel. If you aren’t you on the inside then who are you? And are you always going to be like this? Are you ever going to get you back?

And that brings us to the fourth reason brain injuries are so misunderstood:

#4 Brains take a very long time to heal and remap!

We are used to the healing we have seen all our life – the cut that heals in a week, the broken bone that heals in six, the bad sprain that heals in ten. Heck, after open-heart surgery most people are able to return to work in about eight weeks!

But think about your brain. It took years to develop! That is what the majority of childhood and young adulthood is about – developing the brain. Then, if you are an adult, you have had even more years of refining your neural network.

The brain is a very complex neural network of connections. The brain strengthens and speeds up the neural pathways we use the most. A brain injury disturbs those delicate intricate pathways and connections.

Healing and regrowing of neurons is slow.

Sadly nerve tissue is some of the slowest growing tissue in our body – likely because of how complex it is. Then, in addition, remapping all the intricate connections takes an even longer time.

So how can I get people to understand my brain injury?

Show them this article.

I am not saying that because I authored this article. It is the reverse. I authored the article specifically so you can show it to friends and family.

Show them the High IQ TBI article – there is a lot of information in there no matter what someone’s IQ.

Communicate

Talk to the people you need to educate. And understand that you do not need to educate everyone. Energy is limited when you have a brain injury. Choose the people who you need to have understand what you are going through.

And choose people who want to understand. You will find that those are the people who really care about you.

Use the term “brain holes”.

I find using the term “brain holes” works well. Yes, it is not a medical term. But naming a problem a “brain hole” is creates a visual image which makes it easier for people to understand.

Use Before and After Examples

Do your best to use examples of how things used to work/feel in comparison to how they now work/feel. Again, using descriptions that people can relate to helps a lot.

For instance, I used the analogy of going from a sleek car with a smooth automatic transmission to suddenly finding myself in a clunker with a standard transmission with a clutch that keeps slipping.

Some Never Will. Let them Go.

I wish I did not have to say that!

But sadly, letting go of friends and even family is one of the biggest heartbreaks of having a TBI.

Some people will not want to try to understand. They are adamant in their beliefs and opinions that you are “faking it to get attention”; that “you need to just get over it”; that you are “not really injured” because you “look fine”. Some people will get tired of trying to understand. They will get impatient with the process. Most people cannot truly grasp or understand how extremely slow and incremental brain healing and remapping is.

They may have supported you and been understanding for a while but somewhere along the line they paste a label on you. And they may never bother to come back around to see if anything changed.

Lastly: Blog

Yes, I am serious. Just do a real simple one. Ask a friend to help you set it up. It is dead-easy on WordPress.com or Google Blogger. (Use a pen name or just your initials because it will free you up to not worry about what you say or any perfection issues. Plus, no one will find it if they google your name.)

Write. Just write. Just write what is going on for you.

Writing will help YOU get a grasp on what is going on, which will then make it easier for you to explain it to others. Writing will also help you be more compassionate with yourself. Interestingly, as you become more compassionate with yourself, others will become more compassionate with you too!

Plus, for those who are truly trying to understand and be supportive, sometimes reading what you have written is the best way to help them grasp what it is like for you on the inside.

Question: What problems are you having being understood? What is working to help others understand?

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

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store! This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.

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

Honoring Mothers in the Autoimmune Encephalitis Community

by Alanna | May 12, 2023 | Holiday Stories

May 13, 2023 |by Tabitha Orth, IAES President

Honoring Mother’s in the Autoimmune Encephalitis Community:

Happy Mother’s Day from International Autoimmune Encephalitis Society!

—-

How this piece by Erma Bombeck came to me will always be fresh in my memory. There was a synchronicity to it that touched my heart. Our son Matthew is now 32 years old. When he was four, I was fortunate enough to be accepted into a very elite advocacy training program for people with disabilities called Partners in Policymaking. Raising a child with autism is hard. Attending a yearlong program that met for a 3-day weekend each month was challenging for Jim and me as Matthew required 24/7 care and without back-up, that meant Jim would only get a few hours of sleep a night during those periods.

On this weekend, I was to give a presentation. A break was scheduled right afterward. So, people got up to mingle after my presentation. The room was packed with a few hundred people milling about. As I stepped off the stage, I noticed a woman weaving her way through the crowd toward me. She wore a brown hat and was about a foot shorter than my 5’4”, I vividly recall. She came up to me and handed me a piece of paper, smiled, nodded her head to gesture that she was pleased and that she had completed her task, and then wordlessly turned around and wove her way back through the crowd. I remember following that hat with my eyes wondering at her silent retreat.

Then I looked down at the paper she had given me and saw its age. Three of the edges were dusty brown with the remainder a greyish white that told me it had been kept in a book smaller than the size of the page for many years. The paper itself was from an old-fashioned mimeograph machine from the 1960’s. The texture had that slick feel I recalled from my days in elementary school. This dated the paper back more than thirty years. The crisp edges had worn away years ago as they were now softened, curled and brittle enough with cracked tears in the mimeograph paper all a witness to its age. The print was faded with wavy lined sentences from the imprecise printing of the drum of the machine.

This is what it said.

Choosing “Special” Mothers

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 660,000 women will become mothers of a child with a disability. Did you ever wonder how mothers of children with disabilities are chosen?

Somehow, I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

“Armstrong, Beth, son. Patron saint: Matthew. Forrest, Marjorie, daughter, Patron Saint: Cecilia.”

“Rudledge, Carrie, twins, Patron Saint…Give her Gerard. He’s used to profanity.”

Finally, he passes a name to an angel and smiles. “Give her a disabled Child.” The angel is curious. “Why this one, God? She’s so happy.”

“Exactly,” smiles God. “Could I give a disabled child to a mother who does not know laughter? That would be cruel.”

“But, has she patience?” asks the angel.

“I don’t want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she’ll handle it.”

“I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has his own world. She has to make it live in her world and that’s not going to be easy.”

“But, Lord, I don’t think she even believes in you.”

God smiles, “No matter. I can fix that. This one is perfect, she has just enough selfishness.”

The angel gasps. “Selfishness, is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says ‘Momma’ for the first time, she will be present at a miracle and know it. When she describes what a sunset makes her feel like to her child, she will see it as few people ever see my creations.”

“I will permit her to see clearly the things I see…ignorance, cruelty, prejudice…and allow her to rise above these. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is by my side.”

“And what about her Paton Saint?” asks the angel, his pen poised in midair.

God smiles. “A mirror will suffice.”

By: Erma Bombeck

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

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store! This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.

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

Friendships After A Brain Injury

by Alanna | Apr 11, 2023 | AE Warrior Personal Stories

April 12, 2023 | By Emerson Jane Browne. Reposted with permission from Dancing Upside Down

A message from IAES Blog Staff:

The staff at IAES is excited to bring to you a blog from author Emerson Jane Browne.

Emerson, a traumatic brain injury (TBI) survivor herself, wrote this very insightful blog about a subject we have all encountered. Along our own autoimmune encephalitis journeys, as we have changed, so have our friendships. We hope you enjoy her insight and thoughts as much as we have.

To find out more about Emerson please visit her website ‘Dancing Upside Down’ at https://www.dancingupsidedown.com/.

——

The 4 Categories of Friendships

Essentially friends of most brain injury survivors fall into four categories with a small amount of overlap:

Friends who knew you before your brain injury;
Close friends who are seeing you through the brain injury and recovery;
Friends who met you or got to know you during the brain injury and recovery;
Friends who are getting to know you after the brain injury and recovery.

NOTE: Though I will use the word “Friends” and “Friend” throughout this article you can add in the word “Family Members” because family members will and do fall into the same categories discussed here.

Before Brain Injury Friendships

Before Friends are the ones who knew us at work, through our hobbies, in our neighborhood, at our place of worship, etc.

They knew you as a capable, clear thinker. They knew you as a friend who was fun to be around. They knew you as someone who could get things done.

And especially they knew you as a friend who was like them.

“Like Me” Before Friendships

Many of the Before Friends just cannot handle the changes they see in you from the brain injury. Some friends split fast. Others try to hang on but end up drifting away.

Who are those people? Yes they really were your friends, but the basis of the friendship was that you were similar to each other – the like them factor.

We are different now. It is not that these people wish us ill. It is that we are no longer like them so the like them bond is broken.

“True” Before Friendships

And then there are the Before Friends who stick around. They hang with you through thick and thin. Your friendship becomes deeper and richer.

These “true friends” live the adage of “That which doesn’t kill a friendship makes it stronger”.

They will be some of your best supporters over the long haul because they can remind you of who you were and cheer you on (and razz you) to get back there.

Sometimes those “true friends” are the ones who have known you the longest. But often it is surprising who turns out to be one of the caring friends who sticks with you.

Through Brain Injury & Recovery Friendships

The key thing that makes someone a Through Friend is that they are with you; physically with you, seeing you often. Or they are at least on the phone or Skype with you very frequently.

They have to be close enough that they are able to experience and notice the small improvements; to watch you change over time.

“Through friends” may be family. They may be people who knew you pre brain injury. Or they may be people you have met since the brain injury.

These friends and family are close enough to see you grow into your “new self”. They adjust to the incremental changes along with you. They know and understand when you are able to take on new responsibilities.

This is a critical distinction from the During group below. The During Friends know you during the same period as the Through Friends but they are not close enough to really be able to grock the brain injury healing process.

During Brain Injury & Recovery Friendships

During Friends are ones who did not know you pre-brain injury, or at least did not know you well. They get to know you while you are injured and in the recovery period.

The key thing about this group is they are not close enough to you to understand much about your brain injury (or brain injuries in general) in the first place. And they are not close enough to see and realize the changes that are occurring as you heal and recover.

During friends become friends with you thinking “this is the way she/he is”.

I think the like them factor crops up again in the During Friend category. The basis of the friendship is, once again, that there are interests you share in common, or community – like a place of worship or club. They are friends that you see socially. Friends that you may work with in your recovery period.

During Friends can also be attracted to your disability. They can be people who like helping other people. They can be people who feel good about being “more together” than you. You can explain to the brain injury to your During Friends. You can comment about it frequently. But they just will not get it on the level that the Through Friends do. They cannot fully understand that you were very different before the brain injury or that you are incrementally becoming a new you.

After Brain Injury & Recovery Friendships

Brain injury recover is a very slow process. The healing changes are small but cumulative. They build on each other. Recovery takes years! But it happens. The more you stretch and grow, the more your brain remaps.

The “After Recovery Friends” are friends who get to know you after you are well into your recovery. They know you as you are now; the new you.

Friendships at Risk after Brain Injury Recovery

So which of the above friendships is most at risk as you become a new, capable you? As you regain the skill and talent you had pre-injury?

The During Friends!

They became friends with you thinking “this is the way she/he is”. They are not close enough to you to see and celebrate the small changes. And they did not know you pre-accident!

Your changing upsets the balance with During Friends.

Think of a mobile hanging in perfect balance. If you change one item on a mobile all the pieces move and jerk around until a new balance is restored.

The balance in your friendships with your during friends is similar to a mobile. If you change and become someone different from who your during friends expect then you to be upset the whole balance that they have come to count on! People do not like their balance upset so they try to push you back into “your place” in the friendship mobile.

I don’t think they mean to try to keep you small or injured. They just never knew you pre-injury so did not know you could change as much as you have!

And I also do not think that having them be naysayers is necessarily the end of the friendship. But I do think that the friendship will either adjust over time or end.

You cannot play small to please them.

My experience of Before & Through Friendships

In my case the Before Friend category is especially marked because I moved to a different state soon after I had the “main event” brain injury.

Most of my adult, professional life was spent in the Denver/Boulder area of Colorado. I moved to Seattle and suffered an additional brain injury a week after arriving. Though I have stayed in touch with friends from Colorado, they were not in a place to move into the Through Friends category.

Since returning to Washington, I have been graced with developing a few very close friendships and reconnecting with an old friend and deepening our friendship. Plus, recovering from the brain injury has also strengthened my relationship with my two sisters.

These people are my Through Friends. They have seen me through all the years of recovery. They totally get how much I have healed and how much I am back to full-force capability.

It is the reaction of other friends – my During Friends – that caused me to write this article.

New Job and Friends’ Reactions

I recently was hired into an interim position at an executive level. I am very capable of doing the job and extremely excited about it, even though it is only interim.

My Through Friends are rejoicing with me and cheering me on. They know I am ready to make this step.

My Before Friends are happy for me too. Since I moved right after my brain injury, most of my pre-injury friends never knew how bad off my brain was. They knew I could not work for a while, but for me to be hired at an executive level seems normal to them. I was working at that level in Colorado too.

My During Friends are people who I consider good friends. Most of them are social friends I see often. I thought they understood how how hard I have been working at recovery. I thought they would be supportive and excited about my new position.

But that isn’t the case. It is not that they do not wish me well. I think they do.

But their reaction to my new job is more like a “You’ve got to be kidding me” shock response and a “Who do you think you are!?!” look or maybe the look is even “You can’t do that! Why on earth did they hire you?” I also think some of them do not believe it is a real job.

In hindsight, I understand.

Since they did not know me pre-injury, I don’t think they understood how injured I was when they met me. Therefore, they did not look for, nor see the changes that were occurring as I healed. And since they had no idea what I had been like pre-injury, they had no idea who I was working to reclaim.

I told them what was going on for and with me. I thought they had understood. Now I realize that they thought it was ridiculous that I did not have a “regular job” for so long. They totally did not get what I was working on (both healing wise and work wise). I do not feel I have to entirely give up on my During Friends. They are good friends who I enjoy socially. However, I do feel I need to “encapsulate” them.

It is not important to me that they someday see me in a different light. But it is important that their wishing to put me back into a small box is unsuccessful in how I view myself and how I operate in the world. I cannot play small to please them.

Read more from Emerson Jane Browne on her website: https://www.dancingupsidedown.com/

friendship brain injury 500x333 - Friendships After A Brain Injury

Thanks to Nazka @ morguefile.com for the generous sharing of your photos

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

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store! This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.

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

Daisy the Amazing Rough Rider: Part 6

by Alanna | Mar 21, 2023 | AE Warrior Personal Stories

March 22, 2023 | By Shadazah (Daisy) Brown

The staff at IAES is excited to present the sixth in the blog series by a mighty AE Warrior in her ongoing quest to get all of herself back! Previous posts in Daisy’s journey are linked below:

Part 1: https://autoimmune-encephalitis.org/post/?highlight=Shadazah%20Brown%20

Part 2: https://autoimmune-encephalitis.org/my-continued-story-about-having-autoimmune-encephalitis-2/?highlight=Shadazah%20Brown%20

Part 3: https://autoimmune-encephalitis.org/daisys-ongoing-journey/

Part 4: https://autoimmune-encephalitis.org/daring-daisy-part-4/?highlight=Shadazah%20Brown

Part 5: https://www.youtube.com/watch?v=yTqvt_CqYps

——–

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

This past year has certainly had its share of ups in downs along the road of my AE journey. I have had several relapses that have proved difficult emotionally, mentally, and physically. But I continue to ride this road with positivity!

I have been in and out of hospitals due to seizure activity and AV fistula issues. My seizures are usually preempted by what many of us call an aura. Many AE Warriors can relate to this phenomenon. They can come about quickly or slowly. Sometimes I try to calm my brain and thoughts if I feel an aura but sometimes, they come so quickly, and the seizures come so quickly I have no time or warning. The bottom line with all of this is ongoing anxiety and fear. You never really know when an aura and then a seizure is coming so this can cause fear and anxiety. Somedays I find it difficult to eat, sleep or do simple acts of daily living because of the anxiety. At times I can remember what was happening prior to a seizure and I can remember an aura and sometimes I cannot, but they are all scary.

Many of you may remember the video blog I did for IAES about a year ago about my AV fistula and how helpful having one has been for me. Overall, the fistula has been a godsend and made medication management like getting plasmapheresis much easier. As with most things in life, nothing is perfect, and I have had fistula issues requiring surgery during this past year.

AE can be a rough ride at times. The road can have difficult mountains to climb and beautiful valleys to see. Once again, I will persist and ride this rough road. I will be positive and be Rough Rider Daisy!

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

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store! This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.

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

AE Awareness Month 2023: Brain on Fire

by Alanna | Feb 7, 2023 | Special Series

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

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

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

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

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

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

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

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

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

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

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

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

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

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store! This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.

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

Holiday Gift Guide for Those with Neurological Issues

by Alanna | Dec 14, 2022 | Hot Topics

December 14, 2022 | by Sarah Watts. Illustration by Jeannie Phan. Republished with permission from Brain & Life Magazine

A message from IAES Blog staff:

The holidays are a busy time for everyone. For those of us with neurological issues and for those that care for us, this busyness may seem overwhelming at times. In 2021 Brain & Life magazine published an article that may make one part of the holiday season a small bit easier and much more fun. They published an article that provides a fun and useful list of gifts for those with neurological issues. It is our sincere hope you find this as helpful as we have!

——-

Thoughtful Holiday Gifts for People with Neurologic Conditions

Our guide makes gift-giving a cinch—and fun.

If you ask John Andrejack, a 53-year-old college professor from New York City, what he wants for the holidays, a massage is at the top of his list. It’s the kind of gift that’s personal, he says, but also practical: It helps with the muscle aches that are a symptom of his Parkinson’s disease.

Diagnosed at the age of 47, Andrejack has had several holiday seasons when friends and family wanted to give him something both meaningful to his personality and appropriate for his condition, but it’s not easy. This is mainly, Andrejack says, because Parkinson’s disease and other neurologic conditions such as stroke, traumatic brain injury, tremor, amyotrophic lateral sclerosis (ALS), and multiple sclerosis (MS) vary so much from person to person.

“What might be really useful for someone might not necessarily be wanted by someone else,” says Erin Cecchi, MSW, LCSW, senior program coordinator and clinical social worker at Northwestern University’s Parkinson’s Disease and Movement Disorders Center in Chicago.

But the possibilities are expanding. As the number of Americans living with a neurologic disease increases (that number is now 25 million, according to a report in Annals of Neurology), companies are responding with suitable products and services.

Here are some gift ideas from people who know: neurologists on the editorial board of Brain & Life, physical and occupational therapists, and patients like Andrejack.

Gifts for the Home

Satin sheets.
Soft, slippery sheets make it easier to move around in and get out of bed. (amazon.com, bedbathandbeyond.com, sheex.com, target.com, thecompanystore.com, walmart.com)

Weighted blankets.
These can deflect anxiety and stress. “The heavy feeling of a weighted blanket can be calming and help a person feel safe and comfortable,” says Cecchi. (amazon.com, gravityblankets.com, sensacalm.com, sleepnumber.com, walmart.com, yaasa.com)

Heated blankets or vests.
“Many patients with neurologic conditions have trouble regulating their temperature,” says JoEllyn Fox, DPT, lead therapist at the Dan Aaron Parkinson’s Rehabilitation Center at the Perelman School of Medicine in Philadelphia. This is especially true for people with MS, ALS, and Parkinson’s disease. Blankets and vests help stabilize body temperature. (amazon.com, ororowear.com, walmart.com)

Support wedges.
“Typically, people with Parkinson’s disease have a stooped or forward-flex posture that puts strain on their muscles,” says Chelsea Richardson, PT, DPT, a board-certified neurologic clinical specialist and clinical director at Re+active PT in Los Angeles. Support wedges, roller pillows, and foam leg supports can relieve the aches and pains. “I definitely recommend them for my patients with lower back pain.” (amazon.com, helixsleep.com)

Blue light glasses.
“Light sensitivity is common after a concussion or stroke,” says Richardson. This is true for many types of light and frequencies, including sunlight and computer screens. By blocking out blue light, the specialized glasses can alleviate sensitivity and headaches. (eyebuydirect.com, felixgray.com, warbyparker.com)

Rocking knives.
“Specialized equipment for the kitchen is always a welcome gift for people with neurologic conditions who love to cook and bake,” says Fox. The rocking knife is designed to cut food with a back-and-forth motion and is perfect for those who can’t use a knife and fork because of tremor or muscle fatigue. A pizza cutter is another option. (amazon.com)

Immersion blenders.
They’re lighter than traditional blenders and require only one hand to operate, so they’re good for those with impaired dexterity. (kohls.com, target.com, walmart.com)

Weighted utensils and adaptive gadgets.
Many kitchen utensils are available in heavier-than-normal models for people with dexterity problems. They can help offset tremors associated with Parkinson’s, Richardson says. Adaptive versions of gadgets like electric can openers, vegetable choppers, and apple slicers get the job done with just one hand, which could be useful for a person with a fine motor deficit. (amazon.com, rehabmart.com, rehab-store.com, specialsupplies.com, thewrightstuff.com)

Adaptive dishes.
Bowls and plates with feet that grip the surface and shapes that make it easier to scoop food are helpful for stroke survivors and others who may have weakness on one side. (amazon.com, ncmedical.com)

Silicone place mats and stabilized cutting boards.
Place mats prevent plates from slipping, and stable cutting boards make chopping vegetables safer and easier. (amazon.com)

The Staybowlizer.
A brightly colored ring-shaped accessory made of silicone, the Staybowlizer holds bowls firmly in place so there’s less tipping or spillage while preparing meals. “From an occupational therapy standpoint, these compensate for extra movement like tremor,” Fox says. (amazon.com, staybowlizer.com)

Gifts For Daily Living

Electric Toothbrushes Or Shavers.
Since these devices do most of the work, they can be helpful for people with tremor or impaired dexterity. An electric shaver can prevent cuts. (amazon.com)

Squatty Potty.
Constipation is often one of the earliest nonmotor symptoms for people with Parkinson’s disease, says Richardson. The Squatty Potty footstool positions the body optimally, and it comes in newer styles made of Lucite or bamboo. (squattypotty.com)

Raised toilet seats.
“If you have muscle weakness, it may be difficult to stand up from lower surfaces, such as toilets,” Richardson says. “A raised toilet seat promotes independence by allowing people to get on and off the toilet more easily.” (walgreens.com)

Slip-on shoes and accessories.
Brands like Kizik, Zeba, and Billy Footwear offer shoes that are easy to put on—and stylish. A long shoehorn can help with lace-up shoes, and a sock assist makes putting on socks a lot easier. (billyfootwear.com, kizik.com, zebashoes.com)

Compression socks.
These snug yet stretchy items can ease neuropathy, reduce temperature sensitivity, and prevent muscle cramping, says Cecchi. (affordablecompressionsocks.com, bombas.com)

Adaptive clothing.
Tommy Hilfiger, MagnaReady, and Silverts are some brands that make clothing with Velcro closures instead of buttons. “And it really looks good now,” Fox says. (magnaready.com, silverts.com, usa.tommy.com)

Signature stamps.
Signing important documents can be time-consuming and frustrating for people with impaired fine motor skills. Signature stamps can solve the problem. (simplystamps.com, vistaprint.com)

Writing tablets.
Digital notepads are made just for writing (or drawing), not internet and app use, and they easily erase messages. That makes them ideal for people who have trouble speaking but can still write, says Cecchi, who uses one in her clinic. (mobiscribe.com, myboogieboard.com, target.com, walmart.com)

Picture dictionaries.
Many stroke survivors experience aphasia, which impairs all aspects of language—speaking, listening, reading, and writing—and renders communication almost impossible. Picture dictionaries such as This, Please!: The Tourist Picture Dictionary and Point It: Traveller’s Language Kit are invaluable resources, allowing people to point to what they’re trying to say rather than verbalize it. (amazon.com)

Dictation software.
For those who can speak but have difficulty writing, consider this electronic solution. (livevox.com, dolbeyspeech.com, talkatoo.com)

Writing implements.
Weighted pens make writing easier for those with tremors. Writing grips, lined sticky notes, and wrist braces also improve the ability to write. (rehab-store.com, walmart.com)

Voice-controlled devices.
An electronic “virtual assistant” that responds to spoken instructions to play music or turn on and off lights may help with communication and voice modulation, Fox says. (amazon.com)

Gifts for Getting Around

Canes.
For people with mild walking impairments, a personalized or attention-grabbing cane might be a fun gift, especially if the recipient associates it with more independence or a higher quality of life, says Fox. “It’s important to connect the cane with an added benefit such as getting out to visit a friend.” Some canes even have a built-in GPS navigation system, which can be very handy, says Andrejack. (walmart.com, amazon.com, myrmsstore.com)

Lift chairs and transport chairs and boards.
These are vital but expensive, so consider offering to share some of the cost. But first check with the recipient to see if these items are covered by insurance through durable medical equipment benefits. If recipients already have these devices, make them more personal and fun with light-up wheels, stickers, or monograms for chairs. (amazon.com, sitnstand.com, walmart.com)

Reachers and grabbers.
These devices help access items in hard-to-reach areas, especially for people in wheelchairs or at risk for falling. (amazon.com, carewell.com, myrmsstore.com, walmart.com)

Car-assist handles.
These small, portable levers wedge into the latches of car door frames, making it easier to get in and out of vehicles. (amazon.com, mdmaxx.com, medicalsupplydepot.com)

Car handlebars and car caddies.
These are additional devices that help people get into and out of cars with less effort. (amazon.com, braunability.com, homedepot.com, mdmaxx.com, medmart.com, mobilityworks.com)

Seat lifts.
Combine the gift of a meal at the recipient’s favorite restaurant with a seat lift for the person’s car, says Fox. “Recipients may enjoy the prospect of a dinner more, knowing they can transfer from car to restaurant easily,” she says. (braunability.com, lifewaymobility.com, sitnstand.com)

Gifts for Fitness

Personal trainers.
If going to the gym is not feasible, book a session with a personal trainer who has experience working with clients who have the same condition as the person to whom you’re giving this gift. Reach out to the recipient’s doctor or physical therapist, if possible, for trainer recommendations.

Gym memberships.
Exercise is crucial for people with neurologic disorders, says Richardson, since it increases dopamine, a neurochemical that affects movement, mood, and coordination. (A loss of dopamine can make exercise difficult due to apathy, muscle weakness, fatigue, or poor coordination.) A gym membership can be motivating, especially when the gift giver commits to going too!

Trekking poles.
“Walking sticks improve stability and posture,” says Richardson. They also can increase arm swing and stride length in people with Parkinson’s disease. (kuiu.com, llbean.com, rei.com)

Fitness trackers.
Being stuck at home during the pandemic worsened symptoms for many of Fox’s patients. A fitness tracker can motivate people to move, indoors and out. Fox suggests including a homemade coupon with the tracker that can be redeemed for setting up the tracker. (apple.com, bestbuy.com, koretrakpro.io, target.com, walmart.com)

Weights.
A set of dumbbells or a floor or hand cycle allows people to exercise at home, which is important for immunocompromised and other vulnerable patients who still may be avoiding the gym, says Fox. Just be sure the recipient doesn’t have a condition that precludes using the equipment, she says. (amazon.com, dickssportinggoods.com, walmart.com)

Gifts Outside the Box

Electronic or audiobooks.
E-books are lighter and more portable than traditional books, and audiobooks are ideal for people with vision problems. (audible.com, ebooks.com)

Digital music services.
“Music is so important, for everything from movement to mood,” says Fox. Creating personalized playlists or giving a gift subscription to a monthly music streaming service like Spotify encourages exercise, boosts mood, and triggers memories. (amazon.com, apple.com, idagio.com, pandora.com, spotify.com)

Photographs.
“Framed pictures are thoughtful, but for people whose fine motor skills have declined, they can be breaking hazards,” says Cecchi. “Photo albums work much better, or even individual prints of special photos that evoke fond memories.” Creative gift givers could design a digital or printed scrapbook. (mixbook.com, shutterfly.com, snapfish.com)

Homemade coupons.
Create fun coupons with promises to clean out closets, take out the trash, mow the lawn, or cook a meal.

Days of beauty.
A certificate for a haircut and style may be a welcome gift, especially if you help make the appointment and drive the person to the salon.

Meals.
Bring over takeout or homemade food for two to save your gift recipient the stress of cooking, and to provide company. Cecchi says, “This can be as simple as just bringing someone a milkshake,” which is both delicious and easy to swallow.

Mindfulness aids.
Meditation and mindfulness can ease anxiety and depression, says Fox. To get friends and loved ones started, consider app subscriptions, adult coloring books, or mindfulness workbooks.

Biofeedback tools.
For Richardson’s patients who have autonomic dysfunction—the body can’t regulate body functions like blood pressure, heart rate, and digestion—she uses a wearable biofeedback device called Lief that makes patients aware of erratic nervous system responses and teaches them corrective breathing exercises. It requires a monthly subscription, and users can return it when they’re done. (getlief.com)

Think Twice

You don’t want to give a gift that’s impractical or inappropriate, no matter who the recipient is. If it’s a person with a neurologic condition, certain gifts may be awkward, best shared privately, or better to be coordinated with the recipient’s physician.

Food treats.
A fruit basket or a box of candy is lovely—unless the recipient has problems with swallowing, as can happen with Parkinson’s disease and amyotrophic lateral sclerosis.

Medication organizers.
Items like dispensers, organizers, or pill caddies might feel impersonal or too condition-focused, says John Andrejack, a professor in New York City who has Parkinson’s disease.

Outings.
Without fully understanding the recipient’s abilities and limitations, you might choose an event or excursion that could be stressful. Talk with the person and make plans together if a trip or a concert seems like a good gift idea, says JoEllyn Fox, DPT, lead therapist at the Dan Aaron Parkinson’s Rehabilitation Center in Philadelphia.

Portable urinals.
“These can be so useful for people with Parkinson’s, but I wouldn’t want to get one for Christmas,” says Andrejack. That would make me extremely uncomfortable.”

Walkers or rollators.
“These gifts can be a bit like giving your mom a vacuum for Christmas,” says Fox. They can be practical, but not personal or exciting. And even though retailers like Amazon and Walmart stock them, many of these devices are better purchased through a doctor’s or physical therapist’s office, where they can be fitted properly.

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

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store! This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.

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

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

by Alanna | Nov 23, 2022 | AE Warrior Personal Stories

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!! ❤

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

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

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

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store! This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.

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

5 Ways to Answer “How Can I Help”

by Alanna | Nov 22, 2022 | Hot Topics

November 23, 2022 | By Michelle Seitzer of Caregiving Advice

A message from IAES Blog staff:

In the US, Thanksgiving Day and week are upon us. And we have much to be thankful for. For those within the AE community, we cannot thank all those that care for us, in any capacity, enough! As we round out Caregiver Awareness month and head into a holiday season of joy, peace, and grace, may we all continue to be aware and be thankful for all we have been given.

Michelle Seitzer founder of Caregiving Advice has graciously offered to let us share her article regarding ways to help those that care for us the most. We hope you find this as informative as we have!

She offers wonderful tips, and many ways caregivers can be cared for!!!

——-

Want to help a caregiver whose life is busy, busy, busy? Here’s how!

During this week’s Coffee Chat—our brand new virtual support group that takes place Mondays at 11ET on Instagram Live—we talked about what kind of help is actually helpful for caregivers, and why it’s so hard to get it.

We first posted this article in February 2020, right before the world shut down. How times have changed since then! But the advice we shared here? It hasn’t changed at all. Caregivers still need help. Caregivers still want help. But caregivers get a little triggered by kind offers from well-meaning people—and here’s the main reason why.

Because it feels like more work.

When caregivers hear these age-old phrases—“How can I help?” or “Let me know if I can do anything!”—our initial internal reaction is STRESS. Because the thought of coming up with helpful tasks feels like extra work, and extra work is something no caregiver wants. We want someone to lighten our load, not add to it!

Now don’t misunderstand: We are generally thankful for the offers. We appreciate that you see our need for help and want to provide it. But we need you to make it a little easier for us. And sometimes, we just need a little more time to think about it! As caregivers, we need to say that. “Thanks for your offer, can I get back to you with some ideas? And can you check in with me in a week if I forget?”

So caregivers, next time someone asks you *THE QUESTION,* refer to these 5 simple suggestions. And if you’re reading this as a person who wants to help a caregiver, thank you for your willingness; we hope you find these ideas helpful!

#1: Bring us a meal.

An oldie but a goodie: make us a meal! Or make a couple of meals for me to stack in my freezer, or send gift cards for GrubHub, UberEATS, or our favorite local pizzeria. Planning meals is often the last thing we want to squeeze into our busy day, which leads to lots of unhealthy dinners like frozen pizzas—or even worse, skipping meals altogether.

#2: Come visit us.

Screen Shot 2021 07 14 at 9.37.57 AM - 5 Ways to Answer "How Can I Help"

Offer to sit with our caree for a few hours while I run errands. Don’t feel comfortable with that? Just stop by for a visit when I’m there (if we’re all up for visitors that day)! Caregiving can be extremely lonely, so it’s a huge help to see friendly faces and welcome visitors! It’s equally as refreshing to have someone take over so I can get a few items checked off my to-do list.

#3: Fill our (gas) tanks.

If you really want to do something of monetary value for us, a gas gift card is always appreciated! There’s a lot of driving involved in caregiving, and it adds up. And financial pressures add to our already heavy caregiving load.

#4: Bring us groceries (treats included).

Screen Shot 2021 07 14 at 9.35.30 AM - 5 Ways to Answer "How Can I Help"

With online shopping now available in almost all areas—and with a variety of pick-up, drive-up or delivery options—this is an easy way to help that makes a HUGE difference!

Think of how much work it is to grocery shop…

It starts with planning: thinking about meals and snacks, then assessing what you need, taking note of what you’ve run out of, and jotting it down.

Then you have to figure out when to go, and depending on your caregiving situation, this can be a logistical challenge. Who can stay with your caree, if they need supervision? Or do you bring the person along, which comes with its own challenges? Some caregivers opt to shop at night when a spouse, partner, or child can stay home with the person you care for—but that often means shopping on tired legs and with a weary mind.

Now that you’ve figured out when to go, you have to drive there, go inside, fill your cart, empty your cart on the belt, load the bags in your cart, bring them out to your car, load them in your car, drive home, bring the bags into the house, then put the groceries away.

And then, of course, make a list of the things you forgot, because that inevitably happens, right?!

When you break down all the steps, you realize how much work is involved—and why it would be SUCH a help for someone to step in on this necessary life activity. (It also makes the case for paying the nominal delivery fee for those services, if you ask me!)

#5: Update others for us.

Offer to update others when something big happens. This one is a little tricky in terms of privacy, but it can still be super helpful.

The key word here is “offer.” Never give updates on my caregiving life without checking with me first. But if you know something big just happened (new diagnosis, a fall, change of living situation or school depending on age, a death or similar big loss/change in the family, etc.), ask me if I could help with letting others know.

Who are those “others?” Those are the people who would love to hear the latest on my caree but don’t necessarily need to hear it from me directly—i.e. my pastor, neighbors, boss/coworkers, friends I haven’t talked to in a while, to name a few.

It’s emotionally exhausting to repeat the same information — especially bad news — over and over again, so having someone offer to take on that task provides a huge sense of relief.

And there you have it! Five simple ways to help a caregiver whose life is busy, busy, busy. Pass this on to others who are looking for ways they can help, and let us know if you’d add anything to this list by commenting below.

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

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

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store! This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.

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

Caregiver Honorable Mention

by Alanna | Nov 8, 2022 | Special Series

November 8, 2022 | By Mari Davis

Introduction from the IAES Blog Team:

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

—–

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

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

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

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

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

Mari Davis, RN, ACM

Support Services Coordinator

International Autoimmune Encephalitis Society

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

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

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

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store! This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.

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

Continuing My Way Up The Slippery Slope: A Poem

by Alanna | Sep 27, 2022 | AE Warrior Personal Stories

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!

——-

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.

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

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store! This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.

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

My Journey to Raising Awareness for Anti-NMDAr Autoimmune Encephalitis

by Alanna | Aug 23, 2022 | AE Warrior Personal Stories

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.

Read Barrow Neurological Foundation Article

My 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.

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.

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

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

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store! This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.

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

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

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

Life is Marked by Journeys

The Shady Ladies

Pace Yourself

Taking Chances

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

Why are brain injuries so misunderstood?

#1 Blame it on Hollywood!

#2 You do look great! You look normal.

#3 Brains control everything about us!

#4 Brains take a very long time to heal and remap!

So how can I get people to understand my brain injury?

Show them this article.

Use the term “brain holes”.

Use Before and After Examples

Some Never Will. Let them Go.

Lastly: Blog

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

Choosing “Special” Mothers

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

The 4 Categories of Friendships

Before Brain Injury Friendships

“Like Me” Before Friendships

“True” Before Friendships

Through Brain Injury & Recovery Friendships

During Brain Injury & Recovery Friendships

After Brain Injury & Recovery Friendships

Friendships at Risk after Brain Injury Recovery

My experience of Before & Through Friendships

New Job and Friends’ Reactions

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

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

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

Thoughtful Holiday Gifts for People with Neurologic Conditions

Our guide makes gift-giving a cinch—and fun.

Gifts for the Home

Gifts For Daily Living

Gifts for Getting Around

Gifts for Fitness

Gifts Outside the Box

Think Twice

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

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

Want to help a caregiver whose life is busy, busy, busy? Here’s how!

#1: Bring us a meal.

#2: Come visit us.

#3: Fill our (gas) tanks.

#4: Bring us groceries (treats included).

#5: Update others for us.

And there you have it! Five simple ways to help a caregiver whose life is busy, busy, busy. Pass this on to others who are looking for ways they can help, and let us know if you’d add anything to this list by commenting below.

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

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

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

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

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