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theherd - THE HERD Family Caregiver Special edition November 2022

Don’t Be Left Behind. Keep Up With THE HERD!

National Family Caregiver Month Special Edition

Supportive assistance guide for your AE Journey~

November 2022 

In this Issue~

  •  *Children’s Corner (for all ages): Stay Positive Word Search, Validity and Prognostic Utility of Clinical Assessment Scale for Autoimmune Encephalitis (CASE) Score in Children with Autoimmune Encephalitis
  • *ABI Rehabilitation: Caregiver Word Search, Create a Caregiver Survival Kit
  • *Helpful Tips for the AE Warrior:  Understanding Health Research A tool for making sense of health studies, Autoimmune Encephalitis and Related Disorders of the Nervous System, Dealing with Anxiety in the Classroom
  • *Most Popular Visuals: Caregiver Burn Out, 5 Things To Say To A Family Caregiver, Advice For Caregivers From Your AE Warrior
  • *Featured AE Article: 10 Essential Podcasts for Family Caregivers
  • *Podcast: Tools to Prevent Caregiver Burnout
  • *Caregiver’s Corner: 10 Encouraging Quotes for Caregivers to Brighten Your Day, 9 Free Apps to Manage Caregiver Duties
  • *AE Studies & Clinical Trial: The IGNITE Study, The ExTINGUISH Trial
  • *Monthly Zoom Support Groups for Patients & Caregivers: Caregiver Monthly Zoom Support Group, #AETuesdayTries for patients and caregivers   
  • *AE Trivia Cards:  The Single Most Important Educational/Rehabilitation Tool for AE 
  • *AE Warrior Store:  Shop for Your AE Bling and Raise Awareness 
  • *Shop & Support IAES: Sign up for PayPal’s #GiveAtCheckOut and Amazon Smiles

Children’s Corner

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AE Warrior Stay Positive Word Search

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These exercises are a wonderful way to re-learn and re-train your brain from a brain injury caused by Autoimmune Encephalitis. Exercise helps to develop problem-solving, attention span, organizational, cognitive (memory), and analytical skills.

Validity and Prognostic Utility of Clinical Assessment Scale for Autoimmune Encephalitis (CASE) Score in Children with Autoimmune Encephalitis

Introduction: The clinical assessment scale for autoimmune encephalitis (CASE) is a recently developed and validated scale to rate the severity of autoimmune encephalitis (AE) in adults. But it is yet to be validated in pediatric AE cases.

Results: We enrolled a total of 54 patients (28 girls, probable [45%] or definite [55%] AE). Functional status score (FSS), CASE score, and other scores showed significant improvement at the time of discharge and 3-months, as compared to baseline (p < 0.0001). The intra-observer and interobserver reliability of the total scores was excellent (k = 0.94 and 0.95 respectively). CASE was also found to have good internal consistency (Cronbach-α = 0.83). The corrected item-total correlations of all items were >0.40. The correlation between the total CASE score and FSS score at admission, at discharge, and at 3 months was strong (r = 0.90, 0.92, and 0.94, p < 0.001). In multivariate analysis, only seropositivity or definite AE and CASE score at baseline was found to be significant predictive factors for functional status at 3 months (p = 0.03, 0.01).

Conclusion: CASE score can be used for monitoring the severity of pediatric AE patients. It also has prognostic usefulness for predicting functional independence on follow-up.

ABI Rehabilitation From AE

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Caregiver Word Search

IAES Celebrates #NationalFamilyCaregiverMonth with this puzzle in recognition of the challenges our caregivers face. We appreciate you!

Word Search puzzles are a wonderful exercise to do for brain injury rehabilitation from AE. IAES has created several word search puzzles that feature hidden keywords that will encourage and aid in your learning and understanding of autoimmune encephalitis. Challenge yourself with this AE Caregiver word search puzzle and others that you will find as free downloads on the ‘Rehab Cognitive Exercises’ page on the IAES website.

Create A Caregiver Survival Kit

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Share your love and encouragement by celebrating #NationalFamilyCaregiversMonth by creating a Caregiver Survival Kit for that special caregiver in your life!
IAES has 12 FREE variations of survival kit labels for you to download located on the ‘AE Warrior Gifts’ webpage under the ‘Grow Awareness’ tab. Go out and purchase the fun items listed on the label to enclose in your kit and have fun putting your surprise together. You will be using your cognitive and organizational skills as you do.
Your caregiver is sure to be touched by the time and care you took in letting them know how much you mean to them!

Helpful Tips for Patients & Families

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Understanding Health Research A tool for making sense of health studies

Scientific papers can seem complicated, but they usually follow a similar template. Once you understand that template, scientific papers are easier to understand. This article walks you through the template utilized by most scientific journals and teaches you how to easily navigate any paper to your best advantage. 

Book Recommendation: 

Autoimmune Encephalitis and Related Disorders of the Nervous System-book-Dalmau-Graus

Autoimmune Encephalitis and Related Disorders of the Nervous System

Autoimmune encephalitis, diseases where the immune system attacks the brain, have become a fast-moving field of study in recent years. The authors, Drs Josep Dalmau (who collaborated with IAES on AE Trivia Playing Cards), and Francesc Graus, have played pivotal roles in the discovery of these diseases. Here, they provide a comprehensive clinical guide to the differential diagnosis of these disorders, illustrated with over 200 figures, 30 videos and numerous clinical vignettes, many from their own practice. Clinical descriptions are straightforward, emphasizing distinctive diagnostic clues for each disease. The strengths and weaknesses of diagnostic tests and clinical criteria are discussed extensively, as well as the best evidence supporting the use of available treatments. There is an up-to-date description of immunological triggers and comorbidities, and well-illustrated and clearly summarized pathogenic mechanisms and disease models.

Most Popular Visuals

Caregiver Burn Out

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5 Things To Say To A Family Caregiver

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Advice For Caregivers From Your AE Warrior

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Featured AE Article

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10 Essential Podcasts for Family Caregivers

Most people become family caregivers with little to no knowledge of or firsthand experience with the complexities of this role. Assuming responsibility for care planning, scheduling, handling legal and financial issues, extending a loved one’s independence and managing age-related health conditions—all while juggling your own life—is enough to make any caregiver think “what have I gotten myself into?”

Books and online articles are excellent sources of information, but there is another valuable resource that is often overlooked: podcasts. Whether you want to learn more about how Alzheimer’s affects the brain or listen to a fellow caregiver share their best tips for coping with burnout, there are many podcast series out there to inform and support you on your caregiving journey. The fact that you can listen to podcasts while you are cooking, driving, folding laundry or taking a bath makes them a great resource for busy caregivers! Explore some of the best podcasts about caregiving and aging below.

Podcast

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Tools to Prevent Caregiver Burnout

In this episode, host Elizabeth Miller shares ten signs of caregiver burnout and provides resources for family caregivers to prevent or reverse burnout.

Caregiver’s Corner

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10 Encouraging Quotes for Caregivers to Brighten Your Day

It’s no secret – caregiving can be a tough job. On the days when you’re beyond stressed, you might feel completely alone.

That couldn’t be further from the truth. In the United States, 43.5 million caregivers are currently helping their loved ones. We asked wives, husbands, parents and dear friends doing double duty, as family caregivers to talk about the struggles—and gifts—of caregiving. Caregivers shared their words of wisdom that get them through even the darkest of days.

Remember: you are never alone. Here are 10 of our favorite encouraging caregiver quotes:

9 Free Apps to Help Manage Caregiver Duties

Caring for a loved one involves an array of tasks — managing medications, staying up-to-date on health news, and sharing information, just to name a few. App creators have come to the rescue with helpful ways to stay organized and informed. But with so many options available, deciding which is the best caregiver app for your needs is a challenge. Here we’ve outlined the features of nine free apps, available for iPhone or Android, to help you find the best match for you and your loved one.

Monthly Zoom Support Groups For Patients and Caregivers

Caregiver Monthly Zoom Support Group

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The next monthly meeting will take place on December 8th at 6 pm PST/9 pm EST. The IAES Caregiver Support Group takes place on the 2nd Thursday of each month. This is a ‘safe space’ where caregivers can build relationships/friendships with others who are “walking that walk”, share/vent, and receive the support and direction they so richly deserve.

AE Caregivers have a variety of unique challenges that are different from the AE Warrior’s. Often they feel alone and need to be able to share their concerns with others who are on that same journey. Sometimes hearing a chorus of ‘Me Too!’ can have great healing power of its own. Additionally, some of you may qualify for services you are unaware of that could assist or solve a challenge you (or your loved one) are having. As topics are discussed, your hostess, Mari Davis, will direct you to available solutions, services and supports.

Your Hostess, IAES Support Services Coordinator Mari Wagner Davis, has 30 years of experience as an accredited Nurse Case Manager. Mari’s professional career prior to becoming ill with Autoimmune Encephalitis was to locate and arrange for the support services needed for patients when released from the hospital to rehabilitation or home.

#AETuesdayTries

The next monthly #AETuesdayTries zoom meet-up will take place on November 29th, and will always be the last Tuesday of each month.

“Tuesday Tries” addresses the emotional support and rehabilitation AE patients and caregivers require in recovering from autoimmune encephalitis by building your resilience. The program utilizes science-based exercises from the work of PERMA; Seligman, 2012.

IAES wants to foster your capacity in the belief that better days are ahead! “Tuesday Tries” is about practicing a strengths-based approach by “normalizing the try;” celebrating critical milestones in the recovery and care of AE patients and caregivers in order to build a more resilient network of care.

A workbook organizer, “Growing Your Resilience” has been created to accompany the #AETuesdayTries program and is located on the ‘Apps and Tools for AE Warriors’ page in the section: ‘Building Your Resilience’ on the IAES website under the ‘For Patients’ tab. A link to download the organizer is also provided within your e-mail confirmation when you register.

Join AE patients and caregivers of all ages and stages in their AE journey.  Receive insights and encouragement from others and celebrate your critical milestones in recovery and care while  building a more resilient personal AE network!

Your facilitator, Tessa McKenzie, IAES’ Chief Resilience Officer, is a life coach and studies “resilience” through her private practice, Envisage Vocation Creation and work with Johns Hopkins University’s Life Design Lab. Join Tessa and other AE patients and caregivers who are ready to “Share Your Try Tuesdays”. Tessa will provide prompts for the reframe of perceived failures as well as peer-to-peer validation of “wins” and opportunities for relationship building.

AE Studies and Clinical Trials 

The ExTINGUISH Trial

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This is the first-ever Clinical Trial for a promising new drug, Inebilizumab, to treat anti-NMDA receptor encephalitis, and will be funded by the National Institutes of Health (NIH). 

This trial is actively recruiting. International Autoimmune Encephalitis Society is honored to be supporting the ExTINGUISH trial along with Autoimmune Encephalitis Alliance and The anti-NMDA Receptor Encephalitis Foundation. 

 Main Inclusion Criteria (in part)

Enrollment  is limited to 116 newly diagnosed patients with a confirmed diagnosis of anti-NMDAR Encephalitis who are 18 years or older. Patients must have received at least 3 days of methylprednisolone 1000 mg IV or equivalent corticosteroid within 30 days prior to randomization (Day 1). In addition, patients must have received EITHER of the following treatments within 30 days before randomization.

  • IVIg, at a minimum dose of 2 g/kg
  • Plasma exchange or plasmapheresis, with a minimum of 5 treatments. NOTE: These treatments may be provided during the screening period, but must be completed prior to randomization.

 mRS of ≥3 at the screening visit, indicating at least moderate disability.  Ability and willingness to attend study visits and complete the study.

The IGNITE Study

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Drs. Emmanuel Mignot and Sergio Muñiz-Castrillo and their research group at Stanford University in California have requested IAES’s help in recruiting autoimmune encephalitis patients for The IGNITE study. This study aims to investigate the genetic predisposition to autoimmune encephalitis and related disorders.  Patients must have an identified antibody to participate. The patient may have an active case or be in remission. This exciting study includes patients of all ages and all antibodies. Patients outside of the United States will need the physician who diagnosed them, usually a neurologist,  to contact Dr. Muñiz-Castrillo directly. No travel is involved. Saliva and blood kits will be sent to you in the mail and can be returned by mail or dropped off at named participating pharmacies.

Your participation will help uncover that answer and your act of advocacy will eventually enhance lives! The first step to take is to fill out and submit the screening survey below.

Seronegative/antibody-negative patients can play an active advocacy role by distributing the IGNITE study flyer to their diagnosing doctor, and asking that it be posted at the infusion center you use, as well as hospitals and clinics you visit.

Sharing the flyer on your social media platforms will assist us in getting the highest level of participation possible. 

AE Trivia Playing Cards

The perfect companion  for patients, caregivers & therapists

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Doctor Recommended

Created by IAES and in collaboration with Josep Dalmau, M.D., Ph.D. (The World’s leading expert on AE).  This deck answers 52 of the most commonly asked questions about AE and doubles as a rehabilitation tool.  Increase your knowledge and become a strong advocate quickly and easily with AE trivia cards. 

We appreciate the National Organization of Rare Diseases’ (NORD) enthusiastic support in recommending this groundbreaking product. 

AE Warrior Store

Shop for Your Caregiver Bling In Honor of National Family Caregiver Month

November is National Family Caregiver Month. Celebrate by treating your caregiver to a special gift that tells them how much you appreciate them. Check out our ‘Caregiver Bling’ Collection.

Susannah Cahalan, author of Brain on Fire: My Month of Madness, has graciously given IAES permission to use the phrase “Brain on Fire” as a theme for our 2023 AE awareness month t-shirt and products.  Keep your holiday gift-giving in mind as you view the collection. February’s AE Awareness month is always a special time to raise awareness.

AE Warrior Store products proclaim the bravery and fighting spirit it takes to fight AE and regain your health. Shirts, hoodies, hats, puzzles, mugs, and gift items make this your one-stop shop for patients, caregivers, and friends who have a vested interest in raising awareness for Autoimmune Encephalitis.  Designs can be transferred to any product you prefer. The proceeds of your purchase will immediately support Autoimmune Encephalitis patients, caregivers, and families who are walking this difficult journey.

IAES holds the trademark for #AEWarrior, AE Warrior and Autoimmune Encephalitis Warrior and is the creator of these phrases. Proceeds also go to support research that may one day lead to a cure.

Don’t forget to #GiveAtCheckOut if you purchase your gift through PayPal! (See: Shop and Support IAES Through PayPal’s #GiveAtCheckOut program below).

The proceeds of your purchase will immediately support Autoimmune Encephalitis patients, caregivers, and families who are walking this difficult journey. Proceeds also go to support research that may one day lead to a cure.

Shop & Support IAES Through PayPal’s 

#GiveATCheckOut

Have you wanted to support IAES, Autoimmune Encephalitis awareness, and the AE Warrior that you love?

Here is an easy and affordable way to donate without feeling a thing when shopping with your Paypal account. Each time you check out you will be reminded of an opportunity to give $1 to IAES.

Simply go to your PayPal account and select “set favorite charity”, and choose International Autoimmune Encephalitis Society.  When you make a purchase and check out, an option comes up that asks if you would like to give $1 to IAES? 

Help create the positive change you envision for the AE Community by donating your change.

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Get that great deal online and support IAES at the same time!

When you shop Amazon Smiles and select IAES as the non-profit you want to support, Amazon will donate .5% of our purchases to the International Autoimmune Encephalitis Society.

This simple act of kindness, will support the work we do and advance our ability to service the community. MakeMeSmile is an extension for Chrome that makes sure you select International Autoimmune Encephalitis Society when you shop online. It’s free to download. And you  don’t even need to sign up.

baC - THE HERD Family Caregiver Special edition November 2022

Are YOU an IAES angel? Do you love someone with AE? Do you want to raise AE awareness to not just support AE Warriors but lead researchers to finding a cure?  The IAES Angel is someone who lifted IAES upward by ensuring that comfort, guidance and improved health is brought into an AE patient’s life.

IAES Angels are motivated by their Spirit of giving.  They are Champions in raising AE awareness. Your devotion to supporting our mission and improving the lives of those who suffer from AE is felt mightily and immediately put to use. 

When you become an #IAESANGEL, International Autoimmune Encephalitis Society will send you this badge and profile frame to place on your Facebook page or Website.  As badges ‘take flight’ heralding IAES has been ‘touched by an angel’, others will take notice and they too may find their wings. Together, we will create a future where AE is eradicated from this world and only referenced in medical history books.

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International Autoimmune Encephalitis Society is proud to be a platinum level participant on the Guide Star exchange, demonstrating or commitment to financial transparency.  IAES is a charitable non-profit 501 (c)(3) organization. Tax ID#81-3752344

Donations raised are greatly appreciated and directly support research, patients, caregivers, and families through their journey so the best outcomes can be reached.   Your contribution to our mission will help save a life and improve the quality of lives for others.  Be a part of the solution by supporting IAES.

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International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. 

 

Driven by the knowledge that “Education is Power”, Int’l AE Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones on Face Book, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

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Tabitha Orth
On June 16th- 2022, International Autoimmune Encephalitis Society and Tabitha Orth, IAES President and Founder, officially became the 7,315th “point of light”. The award was founded by President George H.W. Bush in 1990.
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Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.


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

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