Don’t Be Left Behind. Keep Up With THE HERD!
Supportive assistance guide for your AE Journey~
November 2023
National Family Caregiver Month Special Edition
In this Issue~
- *Webinar Event November 16th: Understanding Clinical Trials for AE
- *Children’s Corner (for all ages): Coping with Behavior Problems after Brain Injury. AE Warrior Gratitude Journal for Kids (17 pages)
- *ABI Rehabilitation: Caregiver Word Search
- *Helpful Tips for the AE Warrior: Create a Caregiver Survival Kit
- *Most Popular Visuals: Advice For Caregivers From Your AE Warrior, Caregivers
- *Featured AE Article: Guide to Supporting a Friend or Family Member With a Disability
- *Podcast: Advice For Families And Caregivers, Tools to Prevent Caregiver Burnout
- *Caregiver’s Corner: What Parents of Medically Complex Children Wish You Knew, Caregivers Make it Better Candy Bar
- *Monthly Zoom Support Groups for Patients & Caregivers: Caregiver Monthly Zoom Support Group, #AETuesdayTries for patients and caregivers
- *AE Studies & Clinical Trial: What is a Clinical Trial Video, Cielo Clinical Trial to Compare Satralizumab with placebo in anti-NMDAr and LGI1 patients, The IGNITE Study, The ExTINGUISH Trial
- *AE Trivia Cards: The Single Most Important Educational/Rehabilitation Tool for AE
- *AE Warrior Store: Shop for Your Caregiver Bling In Honor of National Family Caregiver Month
- *Shop & Support IAES: Sign up for PayPal’s #GiveAtCheckOut
Understanding Clinical Trials for Autoimmune Encephalitis
IAES will be hosting a webinar on Clinical Trials that is free and open to the public on November 16th. We went to the best AE expert on the topic, Dr. Jeffrey Gelfand, who enthusiastically accepted our invitation.
Everyone here has a stake in this. If we are to find a cure for AE as an end goal, we MUST have better treatments that are FDA-approved for Autoimmune Encephalitis (approved treatments worldwide) so patients are never denied treatment or experience treatment delays. A great deal of advocacy and understanding of AE had to take place to reach this point. This is HUGE! There are alternative treatments other than Rituxan that can help patients who don’t respond as we hope or can be more effective. There are also 3rd line treatments with extreme promise, but we need to run Clinical Trials to get them to all AE patients for better outcomes.
All of us need to understand how clinical trials are run and share that information with any AE patient we meet. Dr. Gelfand focuses on clinical trials for AE, has been a key researcher on the topic, and has moved the ball forward for all AE patients through his contributions.
Clinical trials provide free AE treatment, experts oversee your case and the health and best outcome of the patient is not compromised if you get a placebo. AE patients get the opportunity to receive a highly promising treatment and our forever thanks for helping all patients (present and future), have better outcomes.
The webinar will be recorded.
Children’s Corner
Coping with Behavior Problems after Brain Injury
People with brain injuries may experience a range of neuropsychological problems following a brain injury from Autoimmune Encephalitis. Depending on the part of the brain affected and the severity of the injury, the result for any one individual can vary greatly. Just as no two brains are alike, no two injuries are the same. Your loved one’s deficits following a brain injury are completely unique, which makes a specific prognosis for recovery challenging.
Personality changes, memory and judgement deficits, lack of impulse control, and poor concentration are all common issues. Behavioral changes can be stressful for families and caregivers who must learn to adapt their communication techniques, reestablished relationships, and change expectations of what the impaired person can or cannot do.
In some cases, extended cognitive and behavioral rehabilitation in a residential or outpatient setting will be necessary to regain certain skills. A neuropsychologist also may be helpful in assessing cognitive deficits and behavioral issues. However, over the long term, both the person with a brain injury and any involved family members will need to explore what combination of strategies work best for them to improve the functional and behavioral skills of the individual with a brain injury.
AE Warrior Gratitude Journal for Kids (17 pages)
Gratitude is the expression of appreciation for what one has. Practicing gratitude means making conscious efforts to count one’s blessings and notice the goodness in life.
BEING GRATEFUL…
- keeps you calm and joyful
- boosts mood and self-esteem
- reduces feelings of loneliness and isolation
- helps develop stronger relationships
- improves the quality of sleep
- encourages positivity and optimism
- makes life more enjoyable
START EACH DAY WITH A GRATEFUL HEART.
Find other helpful & supportive activities for children on the Children’s Corner webpage under the ‘For Patients’ tab on the IAES website.
ABI Rehabilitation From AE
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.
Helpful Tips for Patients & Families
Create a Caregiver Survival Kit
Most Popular Visuals
Advice For Caregivers From Your AE Warrior
Caregivers
Featured AE Article
Guide to Supporting a Friend or Family Member With a Disability
Learning how to help a family member or friend with a disability can take time. This article provides tips and strategies you can use to assist your AE Warrior in a meaningful way. Learning what your AE Warrior needs to be successful with a current goal or task, supports them and assists others around them to realize their full potential. The main family caregiver needs all close family and friends to share in supporting their loved one.
Podcast
Advice For Families And Caregivers
Dr. David Arciniegas discusses Advice for Families and Caregivers.
An important role that families and caregivers can play in helping somebody with a memory problem after a brain injury manage that problem is to meet them where they’re at. Rather than having some idea of how they ought to be doing, attending to how they are doing and coming up with strategies that use their best strengths, as well as the best parts of the environment to help them be strong, is far more effective than trying to encourage them to be something that they may not be able to do with their current passing skills.
Focus on how the person is functioning now, what they’re able to do, and use that to its best advantage.
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
What Parents of Medically Complex Children Wish You Knew
We are not superhuman.
We aren’t some different, stronger breed of human. Being in the role of caregiver is just as hard for us as you imagine it might be for you. We didn’t automatically gain knowledge and strength that others don’t have upon being handed this role.
You could do it, too.
So often, we are told, “I don’t know how you do it!” But, the truth is, you could do it, too, for your child if you needed to. When my son was born, all I knew was that I was going to love him and take care of him no matter what. Nearly sixteen years later, that is still exactly what I’m doing. I think that is what most parents are doing.
We are tired.
We are so, so tired. Not sleepy. Not just fatigued. We are tired way down deep. Completely spent. And sleep can’t fix it, not that we get a good nights sleep often. Our minds, our hearts, our bodies are tired. It won’t stop us, though.
We are lonely.
We don’t get out much. We don’t have visitors often. Friendships and relationships outside of the home can be hard to foster when so much of our lives revolve around caregiving. We are completely and totally responsible for another person’s wellbeing, and that can be time and energy consuming. That doesn’t mean we don’t long for those connections, though. We are thankful for the friends and family who join us in our world from time to time and also for the ones who invite us even if we have to decline most of the time.
Many of us struggle with mental illness.
Trauma, high stress levels, and isolation are just a few contributors to the higher instances of mental illness among caregivers, such as depression, anxiety, and PTSD. It can be exhausting to hear how strong we are when we are struggling to keep it together sometimes.
We are terrified of your cough.
Is it allergies? Is it a cold? Is it the flu? We don’t know, but we’re scared it could make our children very sick or worse. We wish family and friends would tell us when they or someone in their house is sick.
There is always something we need to do.
Maybe we need to make a phone call (there is almost always a call to be made), fill out some forms, change a diaper, feed a meal, order supplies, give a bath, or any of the other day to day stuff that often gets pushed aside as we focus on our child. If we are still, chances are there is something that just isn’t getting done in that moment and we know it.
We worry a lot.
We worry about our child’s health. We worry about them dying. Us dying. Who would take care of them? Finances. Neglecting our own health. Services. Insurance. Medications. Paperwork. Appointments. Waivers. Did I mention we are tired?
We would do it all over again.
If given the choice, we would choose this life all over again if it meant knowing and loving our child.
~Anonymous
Caregivers Make it Better Candy Bar
Instructions:
- Download: paper wrapper
- Wrapper: 5 9/16” x 5 3/8”
- Fits 1.55oz Hershey’s Milk Chocolate Bar, 1.45oz Hershey’s Dark Chocolate Bar, & 1.6oz Belgian Milk Chocolate Embossed Bar
Monthly Zoom Support Groups For Patients and Caregivers
Caregiver Monthly Zoom Support Group
The next monthly meeting will take place on November 9th 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 28th, 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 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
What Is A Clinical Trial (5-Minutes)
Cielo Clinical Trial to Compare Satralizumab with placebo in anti-NMDAr and LGI1 patients
The trial aims to show Satralizumab is safe and effective for the treatment of Autoimmune Encephalitis and become FDA-approved. Your participation will improve the lives of all future patients. Help us reach the best outcomes for all. Ask your doctor about this trial.
The ExTINGUISH Trial
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
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
Doctor Recommended
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
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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.
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.
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.
