5 Ways to Answer “How Can I Help”

by Alanna | Nov 21, 2023 | Hot Topics

November 22, 2023 | By Michelle Seitzer of Caregiving Advice

A message from IAES Blog staff:

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

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

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

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

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

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

Because it feels like more work.

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

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

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

#1: Bring us a meal.

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

#2: Come visit us.

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

#3: Fill our (gas) tanks.

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

#4: Bring us groceries (treats included).

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

Think of how much work it is to grocery shop…

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

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

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

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

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

#5: Update others for us.

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

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

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

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

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

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

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

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

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

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

Caregiver’s guide to self care & avoiding caregiver burnout

by Alanna | Nov 8, 2023 | Hot Topics

November 8, 2023 | By the SingleCare Team; medically reviewed by Gerardo Sison, Pharm.D.

November is Caregiver Awareness month! The staff and members of IAES celebrate, love, depend on and, at times, could not get by without those that have cared for us! To say we appreciate you is an understatement. So, this month we celebrate ALL of you wholeheartedly!

Thank you all!

We are honored to share with you a wonderful article by The SingleCare Team and thank them for allowing us this opportunity!

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Learn risk factors, signs of burnout, and how to reduce the danger of caregiver burnout

A caregiver is anyone who assumes a significant level of responsibility for another person. This could be a family member, friend, or home healthcare worker. Caregivers demonstrate selflessness, commitment, and duty every day. But they also take on emotional and physical burdens that can become overwhelming.

What is caregiver burnout?

Caregiver burnout is a state of total exhaustion brought about by the emotional, physical, and mental toll of assuming responsibility for another person’s needs.

How does caregiver burnout start?

In most cases, caregiver burnout begins with emotional exhaustion. The stress and burden of providing for someone’s critical needs can exhaust a person’s ability to cope. Emotions like anger, sadness, and fear can be harder to control than usual.

Physical exhaustion often follows. Caregiving often requires new physical demands and usually leads to a reduction in other physical activities like exercise. One person may feel lethargic because they no longer go on their morning walk. Another person may have sore muscles because they have to bathe and clothe someone else, or sleep somewhere unfamiliar.

The combination of emotional and physical exhaustion can lead to mental exhaustion. A caregiver may begin making simple mistakes like forgetting appointments or leaving a key ingredient out of a favorite recipe. Restful sleep may be difficult, and a caregiver may lack motivation for social interaction. This is when exhaustion has reached the burnout stage.

If caregiver burnout is not addressed, it can lead to caregiver depression—a dangerous situation for the caregiver and the person to whom they are giving care. Depression is often characterized by feelings of worthlessness, sadness, or irritation, which can sometimes lead to chronic negative thoughts of hurting themselves or others.

If you or a loved one is experiencing severe depression or suicidal thoughts and behaviors, seek help from a healthcare provider or emergency room immediately. You can also call the National Suicide Prevention Lifeline at 800-273-TALK (8255).

Why is caregiving so exhausting?

Caregiving is exhausting because of the time and energy it requires. When someone you love can’t entirely fend for themselves, you want to help them. But when you are preparing meals, sorting out their financial situation, or helping them use the bathroom, you are using up energy and hours normally devoted to your own well-being.

In the end, the exhaustion often comes from losing the ability to do things that you enjoy and that make you, you.

What are the risk factors of caregiver burnout?

Not all caregivers get caregiver burnout. But among those that do, researchers have identified certain risk factors that seem to make caregivers more likely to suffer from burnout. Not everyone who has these risk factors will experience burnout, and people who don’t have any of these factors may experience burnout anyway.

Still, it is worth reviewing these risk factors and being aware of any that apply to you.

Physically demanding tasks (i.e., lifting someone out of a bathtub)
Taking care of someone that has severe behavior problems (i.e., dementia), not only physical ones
Financial difficulties
Living with the person you’re caring for
Lacking friends or a support network
A high percentage of time or long duration spent as a caretaker
History of substance abuse

What are the signs of caregiver burnout?

Certain signs may indicate total exhaustion or caregiver burnout. If you are a caregiver or know someone who is a caregiver, look for the following signs.

Feeling overwhelmed
Feeling constantly worried
Not getting enough sleep, or sleeping too much
Gaining or losing weight
Feeling angry at the person you’re caring for
Feeling easily irritated
Avoiding friends and family
Feeling sad or hopeless
Having frequent body pains, such as headaches
Increasing the use of alcohol, drugs, or prescription medications
Getting sick more often

Caregivers experiencing any of these symptoms should speak to their doctor.

Measuring caregiver stress and burnout

The Zarit Burden Interview is the most widely used diagnostic tool for identifying caregiver burden.

To determine whether you are experiencing excessive caregiver stress, consider taking this Caregiver Health Self Assessment Questionnaire that was developed by the American Medical Association.

How to avoid caregiver burnout

You now have an understanding of what caregiver burnout is, how to recognize it, and who is most likely to get it. Here are 12 proven methods of avoiding burnout.

1. Make sure you get breaks for yourself

There’s no “pause button” for caretaking. Every caregiver may have felt the urge to simply walk away, but they understand that doing so could be catastrophic for the person who is relying on them. You don’t want to let it get to that point.

That’s why implementing breaks into your daily routine is so important. Short breaks can have a hugely positive impact on your mental outlook.

In some cases, the person you are taking care of can manage on their own for a few hours, so you can get away. Others may at least be able to entertain themselves safely while you are in another room.

If you are helping someone who needs constant supervision, you’ll have to be proactive about scheduling breaks. This could mean drafting a neighbor, friend, or family member to help periodically. Or it could mean hiring a home healthcare worker to stop in a few days per week.

We’ve already learned that a high percentage of time spent as a caregiver is a risk factor for burnout. Do everything you can to ensure you have time to yourself to relax and recharge. It’s the best thing for you and for the person you’re caring for.

2. Use tools that make sharing updates simpler

A primary caregiver isn’t only a healthcare worker, they’re a reporter, too. Close family and friends will expect updates on topics like symptoms, prognosis, how their medication is working, what the person is eating, and more.

Individual calls or emails are nice, but time-consuming. When a caregiver isn’t able to provide updates as often as they’d like, they can feel guilty about it which adds to their burden.

Tools like CaringBridge, PostHope, or MyLifeLine make communication easier. These sites let you post updates simultaneously—with controls to protect your loved one’s privacy.

A single update shared with everyone also reduces the risk of miscommunication. Everyone will have the same information, so they don’t feel left out.

3. Use online resources

Every caregiver should have a device with internet access. Critical advice and important resources can often be just a few clicks away.

One of many examples is Eldercare Locator. This free resource site, produced by the U.S. Department of Health and Human Services, has a clean, readable design and trustworthy links. In just a few clicks, you can connect with insurance, transportation, and home care resources.

Many other online resources for caregivers are worth consulting, such as online support groups and local home health organizations.

4. Join a support group

Participating in a support group is one of the best ways that a caregiver can use their limited free time. Caregiving can be isolating and frustrating. On the most basic level, a support group reminds caregivers that there are others facing the same challenges.

But on a deeper level, a support group can help provide guidance that’s based on experience. And a caregiver can feel the satisfaction and catharsis of helping others by sharing their successes and failures with other like-minded individuals.

Bonding over these shared experiences often leads to friendship. As supportive as family and friends can be, they can only sympathize with what you’re going through. A fellow caregiver can share the burden and support you, like a coworker or teammate.

5. Take a self-assessment test regularly

Caregiver burnout doesn’t happen all at once. Emotional, physical, and mental exhaustion accumulates over time.

You stand a better chance of avoiding burnout if you track benchmarks in your mental health. Taking a self-assessment test regularly (say, once a month) will give you a clearer view of how well you are coping.

Self-assessments ask basic questions about your feelings and your physical health. They shouldn’t take more than 10 to 15 minutes. We recommend the Caregiver Health Self Assessment Questionnaire, which was developed by the American Medical Association.

This small-time investment could save you the consequences of burnout.

6. Maintain positive relationships with other friends and family

When a loved one is going through a health crisis, everyone wants to help. Sometimes the best help is the simplest: Reaching out to a friend or family member.

Caregivers need a sense of normalcy that can often be obtained by going on a walk with a former coworker, having brunch with old friends, or enjoying a night at the bowling alley.

Friends and family may feel that they have to do extra, or they may feel hesitant about trying to contact you. Try to maintain a schedule with friends and family members, either by having a phone call every few months or arranging lunch meetups once a week.

7. Set boundaries

One of the biggest changes when you become a caregiver is making decisions for someone else. And the people who also love that person may not always agree with the decisions you make.

You can’t make everyone happy, and being second guessed adds to your burden. Family and friends who want to provide help may do so in a way that interrupts your routine.

So set clear boundaries about things like who should attend doctor visits, when people should visit, and the types of assistance you actually need.

8. Set health goals for yourself, including mental health

The emotional burden of caregiving can cause you to neglect your physical and mental health.

Positive behaviors like exercise and meditation become important when you are under emotional strain. They are an effective way to calm your racing thoughts.

Give yourself achievable goals for activities like these. Phone apps can help by providing daily reminders and preset programs that last 10 to 30 minutes.

9. Set realistic goals for your caregiving and ask for help when you need it

Too many caregiving situations start in crisis mode and stay there. That’s a sure path to caregiver burnout.

Early on, work with your doctor to identify a realistic level of caretaking. Think about your loved one’s current and future needs and whether you will be able to provide them.

For example, someone with a progressive, debilitating disease may be able to function normally now, but what happens when they need help getting in and out of the bathtub?

What types of care are you comfortable giving? Could you give shots, or monitor IV drips? What about driving to pick up medications or necessities like groceries with them in the car?

Think about what will go into caretaking in your unique situation, and set realistic goals for what you can do.

Overextending yourself can lead to burnout (or a dangerous situation) for the person you’re caring for.

10. Talk to a professional, including a therapist or social worker

Becoming a caregiver is a time of stress and even shock. These are times when talk therapy can be extremely comforting and critical to our ability to cope.

Family and friends can be a sounding board, but they also have a close relationship with the person you’re caring for. That makes it hard to honestly discuss feelings of shame, guilt, or anger—feelings that are common and valid.

Speaking to a third party gives you the freedom to express yourself, put certain feelings out into the open, and work on strategies for coping with them.

11. Be realistic about your loved one’s disease

Another reason to seek advice from a third party is to be able to honestly discuss your loved one’s path to recovery—or their lack of one.

For dementia patients, sadly, there is no cure. And doctors can’t say for sure how fast the disease will take hold.

Acceptance can be the hardest part of dealing with certain diseases. We want to believe our loved ones will beat the odds. Thinking realistically about what the future holds can help us balance our hopes with the practical requirements of home care.

12. Develop coping strategies that work for you

Every caregiving situation is different and so is every caregiver.

Some people may decide to take time for solitary walks before deciding that what they really want is to join a support group.

Coping on a daily basis can be a real challenge. Try to identify the stressful parts of your day and how you could alleviate that stress. Maybe you’d benefit from getting housekeeping help or a meal delivery service. It doesn’t have to be forever, but keeping your head above water for the health of you and the person you’re caring for has to be the top priority.

Self-care is part of caregiving

Caregiving can be a shock to the system. Our instinct is to help our loved one, no matter the cost to ourselves. But as the days, weeks, and months go by, we run out of energy.

The most important thing for caregivers to remember is this: Successful caregiving includes caring for yourself.

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

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

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

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

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

Creating Your Personal Health Record (PHR) Notebook

by Alanna | Oct 10, 2023 | Special Series

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!

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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.

Download PDF

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

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

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

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

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

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

The Long Road to Somewhere …. Wherever That is

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

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!

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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 2^ndopinion. 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!

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

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

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

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

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

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

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

IVIG Side Effects: When to Seek Medical Attention

by Alanna | Aug 8, 2023 | Special Series

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

Introduction from the IAES Blog Team:

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

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

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

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

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

——

This IGL blog is sponsored by NuFACTOR Specialty Pharmacy.

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

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

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

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

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

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

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

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

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

—

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

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

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

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

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

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

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

A Mighty Miracle

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

July 26, 2023 | By Rebecca Jablon

Introduction from the IAES Blog Team:

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

——-

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

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

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

How can a mother accept an unknown or rare diagnosis?

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

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

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

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

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

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

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

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

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

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

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

To Add A Miracle on Amazon

Book Description:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

June 28, 2023 | By M Ledferd

Introduction from the IAES Blog Team:

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

——-

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Your Potential Self is Infinite

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

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

A message from IAES Blog Staff:

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

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

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

———

Life is Marked by Journeys

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

The Shady Ladies

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

Pace Yourself

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

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

Taking Chances

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

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

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

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

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

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

Why are brain injuries so misunderstood?

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

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

A message from IAES Blog Staff:

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

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

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

——

Why are brain injuries so misunderstood?

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

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

#1 Blame it on Hollywood!

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

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

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

And that is the second reason:

#2 You do look great! You look normal.

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

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

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

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

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

#3 Brains control everything about us!

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

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

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

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

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

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

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

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

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

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

Healing and regrowing of neurons is slow.

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

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

Show them this article.

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

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

Communicate

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

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

Use the term “brain holes”.

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

Use Before and After Examples

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

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

Some Never Will. Let them Go.

I wish I did not have to say that!

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

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

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

Lastly: Blog

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

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

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

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

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

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

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

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

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

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

Honoring Mothers in the Autoimmune Encephalitis Community

by Alanna | May 12, 2023 | Holiday Stories

May 13, 2023 |by Tabitha Orth, IAES President

Honoring Mother’s in the Autoimmune Encephalitis Community:

Happy Mother’s Day from International Autoimmune Encephalitis Society!

—-

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

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

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

This is what it said.

Choosing “Special” Mothers

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

God smiles. “A mirror will suffice.”

By: Erma Bombeck

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

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

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

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

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

Friendships After A Brain Injury

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

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

A message from IAES Blog Staff:

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

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

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

——

The 4 Categories of Friendships

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

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

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

Before Brain Injury Friendships

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

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

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

“Like Me” Before Friendships

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

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

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

“True” Before Friendships

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

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

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

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

Through Brain Injury & Recovery Friendships

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

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

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

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

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

During Brain Injury & Recovery Friendships

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

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

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

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

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

After Brain Injury & Recovery Friendships

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

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

Friendships at Risk after Brain Injury Recovery

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

The During Friends!

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

Your changing upsets the balance with During Friends.

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

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

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

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

You cannot play small to please them.

My experience of Before & Through Friendships

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

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

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

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

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

New Job and Friends’ Reactions

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

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

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

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

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

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

In hindsight, I understand.

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

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

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

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

friendship brain injury 500x333 - Friendships After A Brain Injury

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

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

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

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

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

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

Daisy the Amazing Rough Rider: Part 6

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

March 22, 2023 | By Shadazah (Daisy) Brown

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

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

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

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

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

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

——–

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

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

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

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

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

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

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

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

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

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

AE Awareness Month 2023: Brain on Fire

by Alanna | Feb 7, 2023 | Special Series

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Holiday Gift Guide for Those with Neurological Issues

by Alanna | Dec 14, 2022 | Hot Topics

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

A message from IAES Blog staff:

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

——-

Thoughtful Holiday Gifts for People with Neurologic Conditions

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

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

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

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

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

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

Gifts for the Home

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

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

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

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

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

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

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

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

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

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

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

Gifts For Daily Living

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

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

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

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

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

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

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

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

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

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

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

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

Gifts for Getting Around

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

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

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

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

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

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

Gifts for Fitness

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

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

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

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

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

Gifts Outside the Box

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

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

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

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

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

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

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

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

Think Twice

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

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

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

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

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

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

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

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

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

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

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

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

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

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

November 24, 2022 | By Janine Samuela-Carasus

Introduction from the IAES Blog Team:

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

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

—–

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

#1: Bring us a meal.

#2: Come visit us.

#3: Fill our (gas) tanks.

#4: Bring us groceries (treats included).

#5: Update others for us.

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

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

Learn risk factors, signs of burnout, and how to reduce the danger of caregiver burnout

What is caregiver burnout?

How does caregiver burnout start?

Why is caregiving so exhausting?

What are the risk factors of caregiver burnout?

What are the signs of caregiver burnout?

Measuring caregiver stress and burnout

How to avoid caregiver burnout

1. Make sure you get breaks for yourself

2. Use tools that make sharing updates simpler

3. Use online resources

4. Join a support group

5. Take a self-assessment test regularly

6. Maintain positive relationships with other friends and family

7. Set boundaries

8. Set health goals for yourself, including mental health

9. Set realistic goals for your caregiving and ask for help when you need it

10. Talk to a professional, including a therapist or social worker

11. Be realistic about your loved one’s disease

12. Develop coping strategies that work for you

Self-care is part of caregiving

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Introduction

Your PHR Notebook should contain:

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

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

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

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

Life is Marked by Journeys

The Shady Ladies

Pace Yourself

Taking Chances

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Why are brain injuries so misunderstood?

#1 Blame it on Hollywood!

#2 You do look great! You look normal.

#3 Brains control everything about us!

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

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

Show them this article.

Use the term “brain holes”.

Use Before and After Examples

Some Never Will. Let them Go.

Lastly: Blog

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Choosing “Special” Mothers

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The 4 Categories of Friendships

Before Brain Injury Friendships

“Like Me” Before Friendships

“True” Before Friendships

Through Brain Injury & Recovery Friendships

During Brain Injury & Recovery Friendships

After Brain Injury & Recovery Friendships

Friendships at Risk after Brain Injury Recovery

My experience of Before & Through Friendships

New Job and Friends’ Reactions

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

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

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

Thoughtful Holiday Gifts for People with Neurologic Conditions

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

Gifts for the Home

Gifts For Daily Living

Gifts for Getting Around

Gifts for Fitness

Gifts Outside the Box

Think Twice

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

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

guidestar