Don’t Be Left Behind. Keep Up With THE HERD!
Selected Highlighted News in the field of Autoimmune Encephalitis~ December 2021 Stocking Stuffer Special Edition
In this Issue~
- *Announcements: AE Awareness Month Merchandise, The Well-Being Gratitude Journal, #AETuesdayTries
- *Children’s Corner (for all ages): Christmas Dot to Dot Games, Jigsaw Puzzles
- *ABI Rehabilitation: Hope Adult Coloring Page
- *Helpful Tips for the AE Warrior: Create Personal Stocking Stuffers for Family & Friends, Will Santa Bring You a Medical I.D. Bracelet or Free Emergency Medical Alert Card?, AmazonSmiles
- *Holiday Visuals: Heart & Soul Pudding Recipe, Hotline Letter to Santa
- *Holiday Musical Videos: The Most Common Antibody of Them All, Deck My IV Poles
- *Letter to my “Before AE Self”: Learn how to participate. Certificate of Recognition given for every Submission
- *Elf’s Research Workshop: Why Rudolph’s nose is red: observational study
- *Claus Research: The Occupational Health of Santa Claus
- *AE Trivia Cards: The single most important educational/rehabilitation tool for AE
- *AE Warrior Store: See our new AE Wingman and hat collections
- *Shop & Support IAES: Sign up for PayPal’s #GiveAtCheckOut and Amazon Smiles
Annoucements
AE Awareness Month Merchandise
#BelieveYouCan is the 2022 theme for Autoimmune Encephalitis Awareness Month, February 2022. Feel empowered in believing you can recover from AE, and create change in the world that raises awareness leading to a cure.
T-shirts have a 2-sided design and may be ordered in a variety of styles (see right side for options). The design on the back of the Tee has the IAES zebra logo and the wording ‘Autoimmune Encephalitis Awareness Month 02-2022’.
These products may begin a conversation that could lead to saving a life.
The proceeds of your purchase support AE research and will have an immediate positive impact on patients, caregivers, and families who are fighting this rare brain disease.
The Well-Being Gratitude Journal
Utilize the journal by challenging yourself to a 21-day commitment described. Spend two minutes a day scanning the world for three new things you’re grateful for over a 21-day period. We instinctively scan our environment for threats. This powerful exercise trains your brain to scan the world in a new pattern of scanning for positives. It’s the fastest way to teach optimism.
We are all capable of learning new behaviors and changing our brain patterns. Research has shown that a person with a low-level of pessimism on day 1 of this 21-day exercise will admit to feeling a low-level of optimism by day 21. When dealing with a life challenge as overwhelming as AE, it is important to take care of your mental health, feel supported in your ability to manage the crisis and feel empowered and truly resilient.
The Journal has a left-hand margin width for a 3-hole punch, so it can be inserted into a notebook. Coloring has been shown through research to mitigate symptoms of physical and emotional distress and is a recommended rehabilitation activity for AE patients. Color in the cover design to personalize your journal while relaxing into a pleasant past time.
#AETuesdayTries
Our program “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.
The next monthly #AETuesdayTries zoom meet-up will take place November 30th and will always be the last Tuesday of each month. 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.
Children’s Corner
Christmas Dot to Dot Games
Welcome to Christmas themed dot to dot coloring games! These games challenge pre-school to 8th grade. To join the fun, start from Dot number 1, follow the numbers in order and connect all of the dots! Find the hidden Christmas themed pictures by connecting the dots. Enjoy!
A fun activity for all ages that will assist with rehabilitation from brain injury.
Jigsaw Puzzles Original Art by AE Warriors
Original art by autoimmune encephalitis patients makes these puzzles a unique gift, challenge & collectors item. Puzzles are a long-time group or individual past time. They are a highly recommended cognitive exercise for anyone with a brain injury or in recovery from illness. Puzzles assist with comprehension, organization, memory, hand-eye coordination, fine motor skills and provide goal setting, patience, and a sense of achievement.
ABI Rehabilitation From AE
Hope Adult Coloring Page
Adult coloring alleviates signs of stress and depression. Coloring reduces stress by activating the brain’s right hemisphere. When we are stressed or worried, we activate the left side of our brain, which is responsible for analytical and cognitive processes, but when we color, we switch gears and access the right side of the brain, the creative, artistic region, which quiets the left part, allows creativity to take over and blocks out worries.
Like meditation, coloring promotes relaxation by focusing the brain on the present moment. When patients color, they engage in the ‘here and now’ and practice mindfulness, which can be a very meditative and relaxing process. Because they’re occupied with thoughts such as ‘what color do I use?’ and ‘how should I color this part?,’ their right brain can relax and give them a break from difficult thoughts about procedures, their diagnosis, pain and the like. Art is a nonverbal way of processing all of these difficult feelings.
Helpful Tips for Patients & Families
Create Personalized Stocking Stuffers For Family and Friends
#AEWarrior chocolate bar wrappers with inspirational messages your friends, family, co-workers, and fellow students will love.
- 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
- Candy not included
Purchase the candy bars. Download, print (for best results center image) and cut out the wrapper.
*Additional free gifts are offered on the AE Warrior Gifts page. Get inspired and start creating gifts for people on your holiday gift list.
All AE patients should wear a medical I.D. Bracelet. This will prevent anyone from misunderstanding symptoms as psychiatric or behavioral problems.
There are a variety of Medical alert bands you can order, here is a simple example of an inexpensive one that will last years.
Next: We all need to carry a Medical Alert Card. Download your free AE Warrior Medical Alert Cards here.
IAES also offers a free AE Identification Card which you can download here.
See the “Apps and Tools for AE Warriors” page of our website for more helpful ideas.
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.
Holiday Visuals
Heart & Soul Pudding Recipe
Hotline Letter to Santa
Holiday Musical Videos
The Most Common AE Antibody of All
IAES invites you to spread awareness for Autoimmune Encephalitis by sharing this delightful musical spoof utilizing the classic holiday music from ‘Rudolf the Red-Nosed Reindeer’. Learn who identified the most common type of autoimmune encephalitis of them all and where that magical moment occurred.
Deck My IV Poles ~An AE Warrior Holiday Song
A Fun Holiday song. We hope it brings a smile and conveys the love we have for all of you in the Autoimmune Encephalitis community.
Although IAES President and Co-founder, Tabitha Orth, is not a singer, she willingly gave this project a go in the spirit of the season. Happy Holidays and may the New Year bring better Health and Recovery to us all.
Letter to My “Before AE Self”~
Each Participant will Receive a
Certificate of Recognition
Hello AE Family,
February, AE awareness month, will be here before you know it. Excitement is brewing as plans are being made. This year IAES has adopted the theme #BelieveYouCan. In that spirit, we are inviting all of you to participate in raising awareness by writing a letter to your ‘before AE self’.
Your letters will be published in the IAES blog during AE awareness month. Everyone who participates will receive a beautiful certificate of recognition. The IAES Blog team will assist with editing your work if you require support and will give you final approval of your submission prior to publication.
If you were to write a letter to the ‘you’ before you got AE, what would you want that ‘you’ to know?
My letter to myself changes daily and monthly but the main thoughts usually remain the same.
Mostly, I would say: “Dear Jeri, you don’t know this yet, but you really do not need to sweat the small stuff, love unconditionally, there may be a rough road ahead but, you, Jeri, are going to make it and be grateful for it.”
To be honest there have been times when this letter to myself may be more of a rant against AE. Like I said, it varies as does all our individual AE paths and stories.
Help open the eyes, hearts and minds of the public and medical community via your powerful letter to your ‘before AE self’. All letters must be received by January 7th. Send your letters to me, Jeri Gore, Editor-in-Chief, IAES Blog Division e-mail: jeri.gore@autoimmune-encephalitis.org
Elf’s Research Workshop
Why Rudolph’s nose is red: observational study
Objective To characterize the functional morphology of the nasal microcirculation in humans in comparison with reindeer as a means of testing the hypothesis that the luminous red nose of Rudolph, one of the most well-known reindeer pulling Santa Claus’s sleigh, is due to the presence of a highly dense and rich nasal microcirculation.
Conclusions
Using hand-held vital video microscopy for imaging the human nasal microcirculation in health, interventions, and disease, we were able to solve an age old mystery. Rudolph’s nose is red because it is richly supplied with red blood cells, comprises a highly dense microcirculation, and is anatomically and physiologically adapted for reindeer to carry out their flying duties for Santa Claus.
Claus Research
The Occupational Health of Santa Claus
The health of Santa Claus has been discussed in the medical literature before and it was concluded that “Santa studies is a developing field in public health, and currently there is a disappointing lack of rigorous research…” In particular, there is a lack of research on the occupational health of Santa Claus. Close examination of the working conditions of Santa Claus highlights a number of pertinent occupational health issues; we have attempted to outline the major points below.
- Safety of equipment operation
- Work scheduling, cardiovascular health and travel related issues
- Heat stress
- The older worker and succession planning
- Mental health
- Workshop ergonomics
Conclusion:
It has previously been reported that there is no standardized requirement for Santa to have a medical check-up, other than pre-employment drug screening. Given the above-mentioned concerns from an occupational health perspective, we feel that it is time to adopt an evidence-based approach to develop, firstly, a comprehensive workplace occupational health program for Santa, and, secondly, a standardized and reproducible protocol for assessment of Santa’s fitness for work. However, we are sensitive to recent trends emphasizing workplace inclusiveness, and would not want to single out Santa for special treatment, thereby possibly contributing to workplace stigma. We therefore additionally suggest that future research directions include efforts to similarly explore and develop recommendations concerning the occupational health of reindeer and elves.
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
New Arrivals ~ The #BelieveYouCan AE Awareness Month 2022 Collection
| New arrivals at The AE Warrior Store. We are pleased to present ~The AE Wingman Collection. Get some swag for your spouse, partner, BFF, caregiver, or advocate that is sure to bring a smile and remind them of how proud you are of their fighting spirit and dedication to helping you on your AE journey. Any AE Warrior knows that we are NOTHING without our #AEWingman’s support and guidance. Our Wingman is the person who has been right by our side encouraging us every inch of our AE journey. The moniker “AE Wingman” should invoke a sense of pride and reaffirmation of the courage and determination it has taken to advocate so long and hard to help us regain health. 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
|
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. |
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.
