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Building Resilience: Overcoming Autoimmune Encephalitis

Building Resilience: Overcoming Autoimmune Encephalitis

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June 26, 2024 | By Tabitha Orth

Message from the International Autoimmune Encephalitis Society Team:

The staff at IAES is excited to present to you a blog about building resilience in the face of autoimmune encephalitis written by our esteemed founder and president!

——

Building Resilience: Overcoming Autoimmune Encephalitis

In the grand adventure of life, our bodies are like sturdy ships navigating the unpredictable seas. Yet, sometimes, these ships face unexpected storms, such as autoimmune encephalitis, a condition where the body’s immune system mistakenly attacks the brain.

But fear not, for within each of us lies a remarkable resilience – a strength to weather even the fiercest of storms. Let’s embark on a journey to understand how resilience plays a crucial role in overcoming autoimmune encephalitis.

Understanding Autoimmune Encephalitis:

Imagine the brain as a bustling city, with each neuron a busy citizen contributing to the city’s functions. Autoimmune encephalitis occurs when the immune system, our body’s defense force, mistakenly identifies these neurons as invaders and launches an attack.

This assault can lead to a cascade of symptoms, including confusion, memory loss, seizures, and even personality changes. It’s like a sudden storm wreaking havoc in the otherwise serene city of the brain.

The Power of Resilience:

Resilience is like a sturdy lighthouse guiding our ship through turbulent waters. It’s the inner strength that helps us bounce back from adversity, face challenges head-on, and emerge stronger than before.

Individuals battling autoimmune encephalitis often demonstrate incredible resilience in their journey to recovery. Despite the challenges they face – the uncertainty, the setbacks – they cling to hope and courageously navigate their way forward.

Navigating the Storm:

Recovery from autoimmune encephalitis requires a multifaceted approach, much like charting a course through treacherous waters. Medical interventions, such as immunotherapy and symptom management, serve as crucial navigational tools in calming the storm raging within the brain.

But resilience goes beyond medical treatments. It’s found in the unwavering support of loved ones, the determination to adapt to new challenges, and the willingness to embrace the journey, no matter how arduous.

Embracing the Journey:

Every journey has its ups and downs, its calm seas and stormy waters. In the face of autoimmune encephalitis, resilience is not about avoiding the storm but learning to dance in the rain.

It’s about finding moments of joy amidst the chaos, celebrating small victories along the way, and never losing sight of the beacon of hope on the horizon.

The Triumph of Resilience:

As the storm of autoimmune encephalitis begins to subside, and the clouds part to reveal glimpses of blue sky, the true triumph of resilience becomes evident. It’s in the smiles of those who have weathered the storm, in the strength forged through adversity, and in the newfound appreciation for life’s precious moments.

While autoimmune encephalitis may leave its mark, it cannot extinguish the indomitable spirit of resilience that resides within each of us. With courage, determination, and unwavering resilience, we can overcome even the most formidable of challenges and emerge stronger on the other side.

Here are five resilience exercises that can help build strength and adaptability in the face of challenges:

Positive Affirmations:

Start each day by affirming positive statements about yourself and your abilities. Repeat phrases like “I am resilient,” “I can overcome challenges,” or “I am capable of handling whatever comes my way.” Positive affirmations can help reframe negative thoughts and build confidence in your resilience.

Gratitude Journaling:

Take a few minutes each day to write down things you’re grateful for. Reflect on moments of joy, acts of kindness, or simple pleasures in your life. Cultivating a gratitude practice can shift your focus from challenges to blessings, fostering a mindset of resilience and appreciation.

Mindfulness Meditation:

Practice mindfulness meditation to cultivate present-moment awareness and calm amidst chaos. Set aside time each day to sit quietly, focus on your breath, and observe your thoughts without judgment. Mindfulness can help reduce stress, enhance self-awareness, and build emotional resilience.

Strengths Identification:

Identify your strengths and reflect on how you’ve used them to overcome challenges in the past. Whether it’s creativity, perseverance, or compassion, acknowledging your strengths can boost self-confidence and resilience. Make a list of your strengths and brainstorm ways to leverage them in current or future challenges.

Problem-Solving Skills:

Develop problem-solving skills by breaking down challenges into manageable steps and brainstorming possible solutions. Practice flexibility and adaptability by considering different perspectives and adjusting your approach as needed. Building problem-solving skills equips you with the tools to tackle obstacles with resilience and confidence.

 

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

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

 

 

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

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

AE Warrior Store 300x200 - Building Resilience: Overcoming Autoimmune Encephalitis 

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

 

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A light at the end of the dark tunnel

A light at the end of the dark tunnel

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June 12, 2024 | By Kaira Frank

Message from the International Autoimmune Encephalitis Society Team:

The staff at IAES is proud to present to you the AE story of Kaira Frank. Kaira and her family show how persistence and positivity in the face of something completely unknown can change outcomes and exemplify the AE Warrior spirit!

——

Kaira Frank 2 376x500 - A light at the end of the dark tunnelAs a Junior in high school Autoimmune Encephalitis was probably the furthest thing from the minds of me and my parents. We did not even know what AE was but that changed in January 2019.

Strange symptoms began. My left leg would feel numb at times to the point that it did not feel as though it was there. At times, I had to physically drag my leg on the soccer field. Over the next several weeks, these strange symptoms spread over the rest of my body. I had small arm and leg jerks. I developed a smirk like smile on the right side of my face. Over time this graduated to upwards of 65 times per day.

In early February of 2019 I was admitted to the hospital for the first time. An EEG & MRI showed no abnormalities. After my second trip to the hospital, we were told my symptoms and issues were psychogenic in nature. I was given anti-seizure and depression meds and given a phone number to a psychiatrist. Both of my parents are social workers and were suspicious about this diagnosis and began to ask questions. They wanted to know about other possible diagnoses. Despite their concerns, we were denied further testing and was told to find better ways to manage my anxiety and to ‘just relax’! We attempted to get a second opinion, but the new neurologist was reluctant to further investigate because I was under the care of another provider.

As February moved into March, my symptoms and seizures worsened. My memory started to fail, my school grades began to suffer, and I was no longer able to drive. Other symptoms began like the desire to wear the same clothes over and over every day because I was convinced I had never worn them.

At the end of March, my family decided a trip up the coast may help to ‘destress’ in the hopes this may help me, in some way, find relaxation. Unfortunately, the opposite happened. The psychological issues worsened, and the seizures intensified to the point to being nonstop even during sleep.

After returning home my parents enrolled me in another health insurance plan with the objective of being able to find better and broader care. Within days, I was admitted to the hospital with a new neurologist. I was placed in a medically induced coma for 72 hours due to being status epilepticus in an attempt to keep my brain safe from the constant seizures. I was in the hospital for 3 to 4 weeks while further testing was done and so they could stabilize me. I was finally diagnosed with antiLGI1 AE. The care I received during this time in the hospital was terrific. I was fondly nicknamed ‘Dory’ from the movie Finding Nemo because of my memory issues!

Kaira Frank 1 281x500 - A light at the end of the dark tunnelAfter several rounds of IVIG, high dose steroids, Vimpat and lots of love from family and friends, I was finally allowed to go home in early May.

My AE path has been a long and crazy road, but I wanted to share my story. It has been 5 years since my diagnosis, and I am doing great!

I am currently off all steroids, will wean off IVIG starting this coming July and am taking a much lower dose of Vimpat. I graduated from high school during Covid and am about 1 year away from graduating from college with a major in Biology and a minor in Psychology.

I wanted to share this for three reasons:

1) I want to celebrate the fact that it has been 5 years since I was in what I would call the “worse state of my life”. It’s been a crazy road, but I have come out stronger because of it. I want to thank my family, friends, and boyfriend for being my rock during these past 5 years, as without their support and help, I wouldn’t be here.

2) Please do not stop fighting for what you think is right. My parents knew something was wrong with their daughter and continued to fight for the best care to figure out what was wrong, rather than letting some shady doctors decide I was crazy. What really pushed them to fight was the movie “Brain on Fire” where they felt understood and really pushed for the tests.

3) There is a light at the end of the dark tunnel! Don’t give up fighting, keep pushing to get better. You will have your bad days, trust me I know, and it’s okay to have them but always remember that you are stronger than your encephalitis!

I am also happy to answer any questions you might have!

Kaira Frank 3 500x375 - A light at the end of the dark tunnel

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

guidestar platinum logo 300x300 1 e1605914935941 - A light at the end of the dark tunnel

 

 

 

 

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

 

 

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

Trivia Playing cards 3 FB 500x419 - A light at the end of the dark tunnel

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

AE Warrior Store 300x200 - A light at the end of the dark tunnel 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

Who’s Who in the World of Physicians?

Who’s Who in the World of Physicians?

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May 29, 2024 | By Mari Wagner Davis, RN, BSN, ACM

Message from the International Autoimmune Encephalitis Society Team:

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

We hope you find this helpful!

Who’s Who in the World of Physicians?

Part I

 

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

What Types of Doctors are Seeing me and Why?

Emergency Room Doctors

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

Neurologist

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

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

Interns and Residents

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

Fellows

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

Attendings

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

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

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

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

Physiatrist

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

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

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

Psychologist and Psychiatrist

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

 

Part II

 

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

The Nursing Staff

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

Respiratory Therapist

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

Social Worker

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

Nurse Case Manager

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

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

Physical Therapist

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

Occupational Therapist

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

Speech Therapist 

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

Child Life Specialists 

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

Vocational Rehabilitation Counselors

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

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

Neuropsychologist

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

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

Psychologist 

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

Insurance Nurse Case Manager

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

The Patient and Family Caregivers

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

Screen Shot 2021 06 26 at 1.44.45 PM 500x123 - Who's Who in the World of Physicians?

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

guidestar platinum logo 300x300 1 e1605914935941 - Who's Who in the World of Physicians?

 

 

 

 

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

 

 

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

Trivia Playing cards 3 FB 500x419 - Who's Who in the World of Physicians?

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

AE Warrior Store 300x200 - Who's Who in the World of Physicians? 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

Rehabilitation Strategies

Rehabilitation Strategies

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May 22, 2024 | By Mari Wagner Davis, RN ACM

The staff at IAES is proud to present an informational blog written by our wonderful Support Services Coordinator, Mari Wagner Davis. Mari is instrumental in helping AE Warriors, their families and caregivers receive the information and services necessary to optimize their diagnosis, care, and recovery. She is a mighty warrior herself and developed strategies that have not only greatly helped her but have also aided hundreds of others on their AE path forward. We hope you find the information and story to follow, helpful!

—————–

My name is Mari Davis, and I am the Support Services Coordinator with the International Autoimmune Encephalitis Society. I was diagnosed with limbic encephalitis almost 5 years ago after having seizures at work. After being diagnosed with AE, I received plasmapheresis, IVIG and steroids. Due to ongoing seizure issues, I remain on seizure medications, and I continue to have memory issues.

After my initial diagnosis and treatment, I had a brief inpatient rehabilitation stay and then was able to move back to our home and transition to a day rehabilitation program. I was, also, able to complete a cognitive rehabilitation computer program. As time went on, it became apparent to me that there was little known about what rehabilitation services may be best for AE patients like me and those with other forms of AE. We all differ greatly in our AE recovery and rehabilitation but many of us have similar issues. I began to question and investigate what services could help to provide the best possible outcomes and help those with AE reach their maximum potential over time.  For example, I have noticed that I have improved greatly in some areas and not so much in other areas.   I have memory issues and have issues with divided attention. I find it difficult to multi-task. Although inpatient and outpatient rehabilitation services ended, I have continued to work on making progress in the areas that I struggle with. With my background and work as a nurse case manager coupled with my own diagnosis of AE, I have been on a quest to find ways to better outcomes not only for myself but all those with AE. Although inpatient and outpatient rehab is wonderful, for me, it has not been AE specific enough.

Many of the areas that I have made the greatest amount of progress on are by developing methods and strategies that I have come up with myself and with the help of others and may be beneficial for those with AE. Realizing and accepting that I have a memory issue has made me become more organized. I have had to develop adaptive strategies for myself. Many of these ideas were not taught during rehab. In the following paragraphs, I will outline strategies that have greatly helped me.

When I plan meals and go food shopping, I save and write my grocery list and organize it by meal versus simply making a list of random items needed at home.  Before I started doing this, I would forget what I had planned on making and because of this I became confused and frustrated.  When I plan to make a meal, I will leave something out on the counter to remind myself of what I planned to make. It is a visual reminder of the meal I plan for that day. Another visual reminder strategy I use is to leave the light on that goes to the laundry area in our home. This visual cue helps me to remember that ‘light on’ means laundry being done. I then remember to go and check on the laundry’s progress. Another visual reminder cue I find useful is to leave my medication bottles on the counter and use a pill organizer. This makes it easier and ensures that I take my medications and keep track of when a med refill is needed. I feel what is out of sight is out of mind. Visual cues have been a very big help for me in overcoming memory issues.

Another way this strategy has been useful is to keep a calendar on my refrigerator. I note events on the calendar and keep this same event calendar on my cell phone. I then utilize the various alarm features and different sounds on my phone for specific events. Having the calendar on the fridge is a visual reminder for me but also lets my husband know what I have planned for certain days. One small thing I do is to call him when I leave the house and call him when I arrive where I am going. This gives him a sense of comfort knowing that I remembered the planned event, have arrived on time, and once home, have gotten there safely. I, also, use phone alarms for my medications. I find this especially useful in the evenings when I may have other activities going on or am tired.  My phone can be useful for directions, typing notes regarding things that I want to accomplish both routine and nonroutine. List making has become paramount for me. For many without AE remembering what needs to be done daily, weekly, and monthly may be easy. For me making a list either on paper or on my phone and then checking off the items once they are done has been a great strategy.  For many of us it can be easy to become frustrated or depressed when we acknowledge or need to deal with memory issues. It can be exhausting. Making lists and checking items off not only assures that things get done but it also gives us a sense of accomplishment and we can then see progress being made. For me, I feel more positive and successful in my rehabilitation.  

When I was discharged from rehab to home, I had no schedule. I slept quite a bit, which is necessary for our recuperation and recovery. And many of us still need to sleep, nap and rest more than we previously did. But I was left with no structure or schedule. I had previously been very busy with work, family, and friends. I felt at a loss.  I no longer had the daily structure I had loved and thrived on before. Trying to develop a new routine can be helpful. It provides structure and can help an individual by giving purpose. For those wanting to and able to return to work this provides a good transition strategy between recovery and returning to work. Simply giving yourself a daily timetable of things to get accomplished can be a mental boost. Of course, at times we need to recognize and pay attention to our brains and bodies and know the daily routines may need to change due to treatments, etc.

Another issue I have realized is that after acquired brain injury, rest is important. It is as important as working on the issues or deficits that remain difficult for us. Most of us need additional rest. At the end of a day, I will find that if I lay down on the couch watching TV, I will fall asleep. If I get up early, I may need a nap during the day. I may need breaks if I am working on something that is cognitively challenging. Giving myself the time to rest, will allow me to be more successful in the things that I am working on.

Exercise can also help in recovery. But it needs to be added to one’s schedule carefully and as tolerated. Exercise can be scheduled into the day at a time that will work with other planned activities. It may take time to come up with a daily routine and individuals with acquired brain injury may need help in initially making a schedule. But developing daily routines for those of us with AE can help our recovery both mentally and physically.

Many of us diagnosed with AE are not able to drive a car or any vehicle for many reasons but the main one being we have had seizures. In many countries we must prove we are seizure free for a certain period of time before our driver’s license can be reinstated or we may need to take a special type of drivers test or class to be able to drive. In my case, I took a special driver’s test with the DMV (Department of Motor Vehicles). The instructor was trained to work with individuals with disabilities and taught me a lot about safe driving. Although I did not pass the driving test the first time, I did the second time, by utilizing what he taught me. I am probably a safer driver now than I was before AE. One of the things the instructor taught me included waiting a bit once the light turns green in case someone is running the red light. This simple act would allow me to avoid getting hit by a car going through the light. I now leave more space between my car and the car in front of me. If there is a reason the car in front of me stops or is stuck in traffic, leaving additional space allows me a way to move into the next lane. I am cautious about my speed and leave additional time to get to where I am going. Prior to AE I used landmarks such as buildings to help when going someplace. Due to my memory issues and the fact that places change, landmarks are moved, etc., I now utilize my phone’s navigation apps versus trying to remember directions. And I check directions prior to leaving home so I am more confident in how to get to a location. Being able to drive once again and utilizing different direction strategies has allowed me some independence and given me confidence in what I can accomplish.

Having a new disability can be difficult to accept. I am not the same person I was before AE. I have seen a psychologist since I was discharged home. I have struggled with grieving the loss of the old me and accepting who I am today. With time and work I can say I have made progress; I now have much more appreciation for other people, I am not in such a hurry that I do not see what may be going on with others around me. I realize that some of my relationships where those of convenience, and I know how much it can mean to people to take a small amount of time to acknowledge them and spend some time with them. I can say that working with a professional around the issues of grief and adaptation can be helpful. I will say recovery after autoimmune encephalitis is a marathon not a sprint. Additional research about the stages of recovery after a diagnosis of autoimmune encephalitis is needed to help provide the services that can help both the individual and the family.

Utilizing some of the strategies I came up with has helped ensure progress in my recovery. It has helped boost my moral. Developing visual cues, trying to schedule my day, exercising when I can, getting adequate rest, learning new driving strategies, and seeing a psychologist have been extremely useful in allowing me to become the new me! 

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

 

 

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

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

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

 

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The Island of Misfit Toys

The Island of Misfit Toys

January 10, 2024 | By Tabitha Orth, IAES Co-Founder and President

Our son, Matthew is watching Rudolph the Red Nose Reindeer tonight. It triggered the memory of a wise, insightful observation he had given me several years ago when I was recovering from a brain injury caused by autoimmune encephalitis.

My executive functions had taken a long vacay. They were MIA.  I rarely did something right. My memory took the hardest hit, especially my short-term memory. I needed a lot of help. That said, I was still “ME”. I was just – making a lot of mistakes. Matthew put his arm around me and tucked me into his side. This is a rare action of giving comfort for Matthew which made its impact more deeply felt. He said, “Mom, you are just like one of the toys on the Island of the Misfit Toys.” Love, acceptance, compassion, and comfort washed over me at the beauty of his words. Reassuring me that although I am a ‘broken’ Mom, I am deeply loved and he will always accept, support, and help me.

Those of you who know my son, know how engaging, honest, and forthright a man he is. You also know how much his autism impacts his life. A visual learner, Matthew has learned language from movies and cartoons. Social graces and social norms on all sides of the spectrum are gleamed through family film entertainment. So much of his understanding of the world, nature, history, science, and the like comes from documentaries on a wide range of topics. He saw I was ‘Mom’ and his Mom had “a brain problem” is how he described it. He told me it wasn’t my fault I “got a brain problem”.  I had been broken and his love never wavered.

Being reminded of the Island of the Misfit toys, had me searching the internet to look it up. I came across this article, We Are All on the Island of Misfit Toys, and it transfixed me. Yes. The author has this right.

The Island of the Misfit Toys Is a scene from the Christmas classic Rudolph the Red Nose Reindeer. If you don’t remember the story, the Island of Misfit Toys is where we find a Jack-in-the-Box named Charlie, a spotted toy elephant, a water pistol that shoots jelly, and all of the other weird toys that nobody wants to play with. The ruler of the Island–a kindly flying lion named King Moonracer is like Santa Claus in reverse–every night except Christmas, he goes all over the world looking for weird and unloved toys. Then he brings them back to the island where they form a community of the unlovely, unloved, and un-played-with. Eventually, the Moonracer promises them, he will find a little boy or girl who wants nothing more than a Jack-in-the-Box named Charlie.

As the article below explains, the inhabitants of the Island of the Misfit toys are splotchity. Synonyms for “splotchity” might include “irregular,” “unpredictable,” “uneven,” or even “messy.” But none of these work as well as “splotchity.” 

The author goes on to explain that the opposite of splotchiness is uniformity: factory-produced items that all look alike, tract homes in a new subdivision, things that are perfect, uniform, balanced, symmetrical, and even. Such uniformity does not occur in nature; it is the product of human enterprise. Human beings equate beauty with uniformity and go to great lengths to eliminate splotchitiness.

If God stamps each person with a uniqueness that signals his love, then those who believe in a higher power have a responsibility, not merely to tolerate what makes people unique, but to glory in its divinity. We are unique, and therefore splotchity, in many different ways, all of them divine. We are all misfit toys—because that is what beautiful looks like to God.

Note:

The term executive function (EF) is an “umbrella term” which encompasses a range of cognitive, emotional and behavioural difficulties which often occur after injury to the frontal lobes of the brain. Impairment of executive functions is common after brain injury and has a profound effect on many aspects of everyday life. Planning, problem-solving, self-monitoring, organization, divided attention, shifting or mental flexibility, and initiation of behaviors are often included under the term executive functions.

Attention and working memory are also sometimes listed as executive functions. The development of executive functions (EFs) is considered to be important because they are necessary for purposeful, planned, organized behaviors such as goal setting and attainment. Most of us take these abilities for granted and we effortlessly perform extremely complex tasks all the time in our everyday lives. Brain injury, Brain damage or active autoimmune encephalitis are all reasons that an individual may have difficulty with executive functions.

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https://bycommonconsent.com/2020/12/04/we-are-all-on-the-island-of-misfit-toys/

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Tabitha Orth 300x218 - The Island of Misfit ToysOn June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

 

 

 

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

 

 

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

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

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

 

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Creating Your Personal Health Record (PHR) Notebook

Creating Your Personal Health Record (PHR) Notebook


October 11, 2023 |
by Mari Wagner Davis, RN, ACM, and Tabitha Andrews Orth

Introduction from the IAES Blog Team:
A diagnosis of Autoimmune Encephalitis is overwhelming on a good day for everyone involved including the patient, loved ones, caregivers, friends, and medical staff. It is rare, difficult to understand and diagnose and may include multiple specialists on a team of medical providers to treat and help a patient. This holds true for many if not all types of disease or health care problems and keeping up-to-date and thorough medical records and having them handy in an organized form is crucial for optimum outcomes. To help make this process less overwhelming Mari Wagner Davis along with Tabitha Orth have put together a wonderful paper of what is needed. We hope you find this as helpful as we have!

——

Introduction

Think of a care notebook as a 1-stop shop containing everything that family, doctors, therapists, and care team would need to know about your care. A notebook is simple and easy to carry. Physicians and health care providers keep medical records to better understand a patient’s prior care and to help inform their decision for treatment plans. Developing your own system for organizing medical information, or creating a personal health record (PHR), will help you stay on top of doctor’s visits, medications, and insurance claims. Providing your own medical records may help you receive safer and quicker treatment if you change doctors, move, or end up in an emergency room.

Your PHR Notebook should contain:

The first page of your personal health record should include your name, date of birth, blood type. Record names, medical practices, addresses, telephone numbers, and email (if applicable) of your doctors and pharmacist. Include the emergency contact information of a caregiver, family member, or friend in case of an emergency. Include the name, policy number, address, and telephone number of your health insurance company and a table of contents.

  • List providers, including the office medical staff assigned to the doctor as your contact person. This may be a nurse or medical assistant who triages calls and patient portal communications. They may be able to assist you directly or pass the information to the doctor to address directly. Some doctor prefer patients use the patient portal to expedite communication. Include provider’s address, telephone number(s) and extensions if available, and fax numbers.
  • Pharmacy address, phone and fax.
  • Emergency Treatment protocol from your Neurologist and stated diagnosis.
  • Medications and supplements: Document the drug name, dosage, frequency, start date, end date, and the condition it is treating, plus any side effects experienced.
  • Medications you are allergic to and other allergies.
  • Immunization records.
  • Hospital discharge summaries.
  • If you’re a caregiver and requesting records for someone other than yourself, facilities will only release them if a direct authorization to disclose records to a third-party form is signed by the patient. Most requests can be fulfilled within 5-10 business days; however, HIPAA (Health Insurance Portability and Accountability Act of 1996) allows providers 30 days to complete a record request, plus a single 30-day extension.
  • Let your doctor know you’re creating a personal health record. Your doctor, of designated staff, may be able to help you find your medical records online, at hospitals, or other health care facilities. Doctor visit summariesand notes should include a disc copy of your chart which you will ask for annually. Make sure you keep the disc updated either from onset to present or from the date of the end of the previous disc. Ask that all studies e.g. EEG, MRI, any scans, be included. The after-visit summary you receive is not as detailed as the doctor’s notes. The doctor’s actual notes are far more detailed than a visit summary and can make a difference to a new doctor attending your case. Update your chart disc annually.
  • If several facilities are involved, contact medical records at the facility where an imaging test was performed and request the MRI, EEG or scans to be burned on a disc for your personal records. Sometimes there is a small fee for the cost of a disc. Some discs can be duplicated while you wait. Some discs may require mailing. The importance of having a copy of your most recent scans available is that it allows you to provide them to a new doctor. For example, an ER attending at a facility other than the facility where the scan was done, or a new doctor for a second opinion. Your copy allows a new doctor access to the most recent results which expedites your care. If you have an appointment with a new doctor and copies of your records were ordered to be transferred to their office prior to your appointment but never arrived, your copy avoids delays and the financial burden of having a scan redone.  If you or your loved ones have certain lab tests done regularly, this record will enable you to track changes from year to year and ask informed questions. Taking your notebook with you to all doctor visits advances your care. This section should include notations of the last appointment and scheduled follow-up appointment.  Get in the habit of requesting a copy of the doctor’s notes when making a follow-up appointment. Again, these are vastly different and more detailed than a typical visit summary. They are usually sent in the mail. Doctor’s notes are included in the disc copy you will be requesting annually. Your health notebook can speak for you when you are unable to remember clearly. Because supplement medical records from other facilities or providers on your team may take weeks to transfer, keeping copies of records as they accrue will help expedite your care.

  • A family health history (particularly parents, siblings and grandparents)
  • A personal health history (conditions, how they’re being treated, and how well they’re controlled, as well as important past information such as surgeries, accidents, and hospitalizations). If you can recreate a timeline of your whole medical history this will be helpful. Some keep this electronically as an email file that can be easily accessed.
  • Pharmacy printoutsthat accompanied prescribed medications. In a study, 40 percent of patients were unable to name a single medication.
  • Insurance formsrelated to medical treatment.
  • Legal documentssuch as a living will and medical power of attorney. POA and emergency contacts with a written release of information for the people who may assume your care.
  • Create separate sections for labs, specialty, and a daily journal that will read as a timeline
  • For students School strategies, IEPs, 504 plans, and contacts.
  • The journal should have the date, symptoms, medication changes, daily vitals if you keep these, accidents, and other pertinent information to the patient.
  • Copies of articles of interest.

 

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

 

 

 

 

 

Tabitha Orth 300x218 - Creating Your Personal Health Record (PHR) NotebookOn June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

 

 

 

guidestar platinum logo 300x300 1 e1605914935941 - Creating Your Personal Health Record (PHR) Notebook

 

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

 

 

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

Trivia Playing cards 3 FB 500x419 - Creating Your Personal Health Record (PHR) Notebook

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

AE Warrior Store 300x200 - Creating Your Personal Health Record (PHR) Notebook 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

The Long Road to Somewhere …. Wherever That is

The Long Road to Somewhere …. Wherever That is

September 27, 2023 | By Amanda Wells

Introduction from the IAES Blog Team:

The staff at IAES is proud to present to you the heart wrenching AE story of Hannah Wells written by her biggest fan and advocate, her mom! This journey travels a very long and bumpy road but also is one of resilience, never ever giving up and, mostly, this is a story of love!

——-

Have you ever noticed how many people, when they are encouraging you, will say, ‘Oh, don’t worry you’ll get there’ but what if you no longer remember where ‘there’ is?

When my youngest daughter Hannah was born, she was 6 weeks premature. On Christmas day of 1983, the paediatrician called and said, ‘If she doesn’t fight, we will lose her, it’s now up to her’! New Year’s Day 1984 he called again, ‘Come and pick her up, take her home, she is a real little fighter, she did it!’ That day when she came home in our arms, we had no idea how that little fighter would have to dig very deep, again, and fight for her life 35 years later!

Hannah was our social butterfly, she was popular with everyone, and everyone seemed to know her! Once she started to talk, she never stopped. Her Grade 1 teacher said to her, ‘Hannah if you can stop talking in class for a whole day, I will give you $20.’ Hannah couldn’t stop talking so the $20 was left wanting!

At age 35 she had been working as a Practice Manager in a Dental Surgery for 10 years. She was amazing at her job. Dentists and patients alike loved her. She was chatty, never took a sick day, and was always organized. Hannah would call me every day from work just to fill me in on what was happening and to touch base.

Around the end of April/ May 2018, Hannah got the flu. She was suffering from headaches and became deaf in her right ear. She went to a general practitioner, and he said, on the third visit, to see a psychologist, he did not believe her headaches were real!

Then one day, in early June, my husband (who was still alive) and I had just been to IKEA and were on our way home when my mobile phone rang. It was Hannah. She had called me the night before to say goodnight and was fine, but this call was anything BUT fine. She was paranoid, delusional, and hearing voices. She had made up some unbelievable story of what was happening next door. I got off the phone and remember feeling ice in my veins, my husband, Hannah’s dad, and I looked at each other and said, ‘What alien has stolen our daughter?’

The days that followed that fateful June day were horrendous. Hannah was in full-blown psychosis. She would call me up to 30 times all night long, as she had insomnia. Her thoughts were disorganized, she could no longer work, and she couldn’t remember how to turn a computer on, copy and paste or even how to unlock a door. She couldn’t change her clothes because she couldn’t remember what clothes went where. She had no idea what day it was or even who our Prime Minister was. She would take off in the car and we didn’t know where she was. She didn’t even know where she was. The internal trauma and also one of her symptoms were now causing unimaginable rage.

When this all began Hannah developed dyskinesia or involuntary and jerking movements. She lost an extreme amount of weight and was now 35 kgs (between 75-80 pounds). Her anxiety was through the roof, and she had become aggressive. Her hair was falling out in spots, and she had tremors in her hands. Hannah knew something wasn’t right but by now had no idea how to articulate it. She was living in a mental prison that was terrorizing her. She knew, in all this chaos, something was wrong in her brain but had almost stopped talking. When she did talk, she would repeat the same sentence for hours, therefore she was unable to articulate how she was feeling.

She/we needed help, this was not our daughter, and I was desperate.

I took her to a nearby hospital emergency department hoping they could help her, but sadly this is where the nightmare really began. Not one test was done except a blood test for drugs. The on-call psychiatrist took me aside to ask what happened. I told her, ‘Hannah has never taken drugs, doesn’t drink, has no past or present trauma, and no mental health in the family. I said this happened, literally, overnight’. I will never forget her reply, ‘That means absolutely nothing.’

Hannah was sectioned under the Mental Health Act and put into the psych ward. The only test done was daily drug testing, no neurological testing was ever done or even suggested. The psych wards in our state are still lock-up wards. She was started on Risperidone, but Hannah refused to take it and would spit it out, as she told us much later, it was making her feel worse.

After getting her released from that psych unit, we decided to take her to one of our large teaching hospitals. They took her from me, and I had no further contact with her. I wasn’t asked what led to our decision to bring her there. They placed Hannah in a room with no water, bathroom, or blanket and took her phone away from her for 12 hours, no one checked on her. They then sectioned her under the Mental Health Act again.

I was trying to speak to a doctor and when I finally did, he told me she had been on drugs, ICE, and that’s why the dyskinesia in her face and weight loss. I asked if he had her chart in front of him and the blood test to confirm this. He admitted he didn’t! Again, no tests were done on Hannah, we couldn’t get information about her from the staff, and by now we were desperately trying to get her out of that hospital and under a private doctor’s care.

To this day I have no idea how my husband got her out of there and got her an urgent appointment with a private psychiatrist, but somehow, he did! She was immediately admitted to a private psych hospital. They did an ECG (on her heart!!!) tested her blood for drugs and that was it. They put Hannah into 2 weeks of CBT, cognitive behavioral training for someone, who cognitively, was a mess! Her short-term memory was non-existent. She was unable to read, write or comprehend 2/ 3 sentences. They also prescribed new antipsychotics! Hannah’s memory and executive functioning abilities were in total chaos, but not one person suggested a neurological workup! As her Mum, I had never felt so hopeless in my life. My daughter was there on the outside, but on the inside, it was like she had left us permanently.

By the end of September and Hannah’s initial psychosis was at last dissipating. There were still the outbursts of rage, strange seizures where she would seem to be frozen, dyskinesia, and limited speech that was often slurred. She would still repeat a phrase or thought for hours, we called it her hamster wheel.

2018 turned into 2019. Trying to get through 2019 was difficult, to say the least. Not only had the disease traumatized her but the auditory hallucinations and repeated hospitalizations had bullied her. She was still very sick, and the doctors had no answers at all!

In 2020 I decided to take her to my dermatologist to check the alopecia (hair loss) that had begun back in 2018 when this all first began. She did a blood test and told Hannah she needed an endocrinologist immediately. She felt she had a thyroid problem. Her blood samples showed abnormal levels. The endocrinologist who treated my husband for osteoporosis, treated Hannah for Graves’ disease, but soon realized this was not her thyroid, there was something else going on and as she said, ‘it was above her pay grade.’ She sent Hannah to her brother who is an infectious and rare disease doctor.

During this time, I went with Hannah back to her psychiatrist who still insisted on seeing her monthly. I was stunned when we told him about the blood tests and the endocrinologists’ findings. He said, ‘I believe this is just a false positive and she just has anxiety and stress.’ 

By November 2020 we now had seen the rare diseases doctor who flagged her for Autoimmune Encephalitis, but he was stumped and believed she needed a neurologist. We found a neurologist who knew about AE and waited 6 weeks for an appointment.

During all this, my husband, Hannah’s dad passed away a few days before Christmas 2020. I had been caring for him for the last year and for Hannah also. I was exhausted!

Hannah and I were now both grieving the loss of a great husband, an incredible dad, and for Hannah, and the life that she once had.

It was 2021 by the time we saw the neurologist. He ordered an MRI, lumbar puncture (LP), and EEG. He told us the MRI came back normal, as did the LP, but the EEG indicated slowing in the temporal lobes, He said he believed she had Autoimmune Encephalitis. He put her on high-dose steroids tapering down for 3 months. There was some improvement after 3 months, so he repeated the high-dose steroids.  He then put her on Cellcept and steroids. He told her to come back if she needed him.

In April 2021 Hannah had a horrific reaction to Cellcept. The neurologist discontinued Cellcept, but she remained on steroids. He said he felt it was now probably too late to treat her! During this time, Hannah began to have breathing issues, but a CT scan did not reveal anything amiss. I was very concerned about Hannah’s bones with all the steroids and told her neurologist, as osteoporosis runs in the family.

April/ May 2022 Hannah seemed to be in a relapse. The only answer they had was more high-dose steroids. Hannah’s GP (general practitioner) was concerned and referred her to another neurologist for a 2ndopinion. This new neurologist, also, said it was Autoimmune Encephalitis and put Hannah back on another round of high-dose steroids and wanted Hannah to have full cognitive testing.

This journey was beginning to feel like one big roundabout that had no exit. Trying to get any proper treatment was almost impossible.

Her cognitive testing showed deficits with her executive functioning, word processing, short-term memory, and visual abilities were all very badly affected. Hannah was told she needed brain rehab immediately. The report said that this was caused by Autoimmune Encephalitis and damage to the temporal lobe.

The neurologist then said I will see you in 6 months and since it had been 4 years since this all began it is too late to treat Hannah. Her MRI showed a small amount of inflammation, but again ‘It’s too late to treat her now.’

At this point in this long terrifying journey, I was ready to scream. Hannah was now traumatized by the very system that is supposed to heal and help you navigate through a rare disease.

Exactly one week and one day after the neurologist sent us on our way for 6 months to Rehab which was possibly never going to happen because of the long wait list, Hannah ended up in a Private hospital Emergency Dept on her birthday, she was extremely sick. They suggested we go back to her endocrinologist. I was so frustrated we were back at the beginning again!  Hannah was devastated. She lost her career, her friends, her life! This disease is harrowing and traumatic, and you have to walk the road to somewhere …… alone!

I was able to obtain Hannah’s complete medical chart that included all prior testing and information. I was beyond incredulous at what I was looking at. Her breathing issues back in 2021 when they said the testing showed nothing amiss was a rib fracture. I was right, this looked like osteoporosis! All her blood tests showed inflammatory markers through the roof since her relapse in May 2022. Her GP couldn’t believe how sick she was. She was now having around 4/5 seizures a day. Her dyskinesia had returned, and anxiety and OCD through the roof. The GP prescribed Azathioprine and steroids, and seizure medication.

 I asked for a bone density and her bones were a mess, at 39 she now had osteoporosis!

I thoroughly researched all possible doctors we could contact and turn to review Hannah’s case. I found 2 immunologists; one was a neuroimmunologist whose interest was in Autoimmune Encephalitis. Both had 12-month waits. I wrote to both doctors a letter pleading for help and succinctly outlining Hannah’s case history and her present-day symptoms. Her endocrinologist was stunned she was back where she started 4 ½ years ago, she even contacted the immunologists. Both immunologists denied her an appointment. Their reasoning? She was too complicated and was in the system for too long.

 Then out of the blue Dr Martin Newman, the neuro immunologist with experience in AE had a change of heart and called wanting to see her in three days. Her medical file had almost 100 pages (and this was missing most of the beginning files!) and after 5 minutes he said to her, ‘So have they treated you with IVIG or Rituximab?’ Hannah said, ‘No.’ His response was ‘Why not’! Hannah cried, as she sat before someone who just maybe would now help her come back from the brink of the darkness of shame, guilt, isolation, and feeling lost, and she asked him, ‘Will you be able to help me?’ His answer was, “I certainly will Hannah.’ He started Hannah on IVIG in early May 2023 followed by two Ritux infusions. She will most likely be on both for the foreseeable future. Hannah is now, also, in weekly Brain Injury Rehab.

It is now 5 years since Hannah stood on the edge of insanity and a harrowing nightmare. Hannah had almost forgotten who she was and what it’s like to be ‘normal’ and healthy.

I am so thankful to Tabitha Orth, President and Founder of IAES and the IAES family. They were always there, whether I needed a rant or information, their resources seemed limitless. I had no choice but to learn everything I could about Autoimmune Encephalitis. I realized, for an advocate, knowledge is power! I am so thankful for IAES who gave me so much knowledge so as to keep advocating for my daughter.

After 4 months we have seen great improvement. She is mentally and physically up and down. Each day can be different, which we were told to expect, but her progress especially cognitively has amazed all those caring for her medically.

IVIG dealt with a lot of her physical problems. Rituximab kicked in around 9 weeks and she was amazed at some of the improvements cognitively.  Where almost ‘there,’ even though ‘there’ is different from what I had expected, but ‘there’ is more than OK. One of the remaining issues with AE is loss of identity and confidence. Hannah’s motto through all this is: ‘I was enough before and I’m enough now!’

After 5 harrowing and terrifying years, we have learned a lot. If you are an advocate/caregiver or even a patient trying to advocate for yourself, don’t give up! There will be someone out there who has a small beacon of light, a life raft for you to jump in, and most of all hope to give you the strength to keep going. IAES and their personal care held a torch for me to see and guided me to the tugboat whose name was ‘DON’T QUIT!’

Just find that light and keep your eye on it!

IMG 0082 - The Long Road to Somewhere …. Wherever That is

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Tabitha Orth 300x218 - The Long Road to Somewhere …. Wherever That isOn June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

 

 

 

guidestar platinum logo 300x300 1 e1605914935941 - The Long Road to Somewhere …. Wherever That is

 

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

 

 

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

Trivia Playing cards 3 FB 500x419 - The Long Road to Somewhere …. Wherever That is

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

AE Warrior Store 300x200 - The Long Road to Somewhere …. Wherever That is 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

IVIG Side Effects: When to Seek Medical Attention

IVIG Side Effects: When to Seek Medical Attention


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.

——

NX NuFACTOR Blog logo - IVIG Side Effects: When to Seek Medical AttentionThis 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.

SIDE EFFECTS CHART GREEN YELLOW RED 101014 - IVIG Side Effects: When to Seek Medical Attention

 

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

 

 

 

 

 

Tabitha Orth 300x218 - IVIG Side Effects: When to Seek Medical AttentionOn June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

 

 

 

guidestar platinum logo 300x300 1 e1605914935941 - IVIG Side Effects: When to Seek Medical Attention

 

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

 

 

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

Trivia Playing cards 3 FB 500x419 - IVIG Side Effects: When to Seek Medical Attention

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

AE Warrior Store 300x200 - IVIG Side Effects: When to Seek Medical Attention 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

A Mighty Miracle

A Mighty Miracle

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 333x500 - A Mighty Miracle

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?

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subscribe - A Mighty Miracle

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

Tabitha Orth 300x218 - A Mighty MiracleOn June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

guidestar platinum logo 300x300 1 e1605914935941 - A Mighty Miracle

 

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

 

 

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

Trivia Playing cards 3 FB 500x419 - A Mighty Miracle

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

AE Warrior Store 300x200 - A Mighty Miracle 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

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

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

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.

M Ledferd and daughter n 1 375x500 - You’re alive, you’re breathing, and growing older is a privilege

M Ledferds daughter 1 500x375 - You’re alive, you’re breathing, and growing older is a privilege

 

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

Tabitha Orth 300x218 - You’re alive, you’re breathing, and growing older is a privilegeOn June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

guidestar platinum logo 300x300 1 e1605914935941 - You’re alive, you’re breathing, and growing older is a privilege

 

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

 

 

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

Trivia Playing cards 3 FB 500x419 - You’re alive, you’re breathing, and growing older is a privilege

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

AE Warrior Store 300x200 - You’re alive, you’re breathing, and growing older is a privilege 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

Your Potential Self is Infinite

Your Potential Self is Infinite

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.

lisa lauter 1 500x375 - Your Potential Self is Infinite

 

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

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

 

 

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

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

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

 

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Why are brain injuries so misunderstood?

Why are brain injuries so misunderstood?

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?

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

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

 

 

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

Trivia Playing cards 3 FB 500x419 - Why are brain injuries so misunderstood?

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

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

 

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Honoring Mothers in the Autoimmune Encephalitis Community

Honoring Mothers in the Autoimmune Encephalitis Community

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.

mothersday - Honoring Mothers in the Autoimmune Encephalitis Community

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! 

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

 

 

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

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

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

 

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Friendships After A Brain Injury

Friendships After A Brain Injury

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:

  1. Friends who knew you before your brain injury;
  2. Close friends who are seeing you through the brain injury and recovery;
  3. Friends who met you or got to know you during the brain injury and recovery;
  4. 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! 

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

 

 

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

Trivia Playing cards 3 FB 500x419 - Friendships After A Brain Injury

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

AE Warrior Store 300x200 - Friendships After A Brain Injury 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

 

Daisy the Amazing Rough Rider: Part 6

Daisy the Amazing Rough Rider: Part 6

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!

Shadazah Brown VLOG 1 - Daisy the Amazing Rough Rider: Part 6

 

 

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

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

 

 

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

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

AE Warrior Store 300x200 - Daisy the Amazing Rough Rider: Part 6 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

 

Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.


International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

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