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theherd - THE HERD December 2019~ 1st edition

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Selected Highlighted News in the field of Autoimmune

Encephalitis December 2019 1st edition

In this Issue~

  • Announcements: Encephalitis Research Engagement Day, Follow IAES on Instagram
  • Most Popular Handout of the Month: What is AE
  • Most Popular Visual of the Month:  Fatigue after brain injury and what happens in AE
  • Most Shared Post:  Cognitive rehabilitation for ABI from AE
  • What medical professionals are saying about IAES: A Neurology Critical Care Pharmacist shares
  • Clinician’s Corner:  First Randomized trial AE
  • Open Access:   The autoantibody-mediated encephalitides: from clinical observations to molecular pathogenesis
https  cdn.evbuc .com images 76297661 130340548549 1 original.20191010 113104 - THE HERD December 2019~ 1st edition

January 8th, 2020 – Autoimmune encephalitis is an illness affecting the brain. It can cause changes in thought, perception, and memory; seizures; and abnormal movements. In recent years, much has been learned about the causes and therefore the treatment of this illness.

This the day is your chance to find out about the research being carried out by the Oxford Autoimmune Neurology Group. You will also hear from patients, carers, and clinicians, as well as having an opportunity to comment on research priorities.

Refreshments, lunch and drinks reception provided.



Red Flags AE Psychosis - THE HERD December 2019~ 1st edition

You can now follow us on Instagram at intl_ae_society for educational and entertaining visual information.

Most Popular Handout of the Month~

AE defined handout - THE HERD December 2019~ 1st edition

What is Autoimmune Encephalitis?

Antibody-Mediated Autoimmune Encephalitis (Encephalopathy) is a rare disease that can be progressive or relapse-remitting. It is caused when the immune system makes auto-antibodies that are not supposed to be there. These auto-antibodies (aka antibodies) begin to attack healthy brain cells wrongly identifying those healthy brain cells as foreign. An autoimmune response is now occurring as the immune system attacks and destroys the brain’s healthy cells. Your own body’s immune system is attacking your brain. You are the victim of “Friendly fire”.
The antibody attacks by targeting special receptors in the brain that are on the cell surface, or exposed at the synapse of healthy nerve cells in the brain. Sometimes the antibody seeps inside the cell it is attacking. These antibodies bind to the healthy brain cell damaging or destroying them. Severe brain inflammation occurs. The brain now malfunctions. All brain functions can be compromised: emotions, psychosis, memory, cognition, problem-solving, speech, movement, seizures, balance, visual processing planning, sensory, hunger, thirst, behavior and personality traits, often followed by suppressed levels of consciousness and coma may occur.
AE is TREATABLE. Recovery is possible but most face years of treatment and rehabilitation. Many are left with various levels of brain injury.



Most Popular Visual of the Month~

Antibody-mediated Autoimmune Response


antibody mediated Autoimmune encephalitis - THE HERD December 2019~ 1st edition
fatigue after brain injury - THE HERD December 2019~ 1st edition

Most Liked and Shared IAES Post

FAQ Friday 1 - THE HERD December 2019~ 1st edition

Question: My son still suffers from ABI (Acquired Brain injury) after being diagnosed and treated for Autoimmune Encephalitis. What can he do to help his healing cognitively?

Question: My son still suffers from ABI (Acquired Brain injury) after being diagnosed and treated for Autoimmune Encephalitis. What can he do to help his healing cognitively?

Answer: The brain can take a long time to heal. Be patient. If AE is not active the brain is healing and needs time to rewire itself. Aside from rehabilitation inpatient or outpatient, there are excercises that he can do to help strengthen his brain. Cognitive healing is different for everyone.
Some take longer than others.

Benefits of Cognitive Exercises for AE Patients

Cognitive exercises are a great way to improve and preserve cognitive function after an Acquired Brain Injury (ABI).

Here are some of the best cognitive exercises for ABI you can do at home to sharpen your mental skills.

Just like how your body needs exercise to stay healthy, your brain needs to stay active in order to preserve function and recover from brain injury.

Stimulating your brain through activity causes more neurons to fire, which helps keep your brain operating properly.

After a ABI, it is especially important to exercise your brain so that you can engage neuroplasticity, which is your brain’s natural ability to rewire itself.

But how do you exercise your brain?

You can do so through using several different cognitive exercises which challenge your brain to think in unique ways, causing it to create new neural pathways.

These new pathways will help you strengthen many cognitive skills, such as memory and recall and even regain some skills you may have lost!

Attention and Concentration Exercises for AE Patients

The following attention and concentration exercises will help you improve your ability to focus and pay attention to more than one thing at a time.

Some of these exercises will require help from another person such as a caregiver or family member.

1. Repeat Numbers and Letters

Caregiver: say a list of letters or numbers in a slow, steady tone of voice and ask the person who has suffered the brain injury to make a mark on the paper every time they hear a certain number or letter

2. Rhythm Matching

One person should tap out a simple, two-step rhythm several times with their hand on the table (tap-delay-tap-tap). The person with the injury should try to match the rhythm.

If this seems too easy, both of you should turn your chairs around so you are not facing each other. This way you can only focus with your auditory processing.

3. “Add 3, Subtract 7”

Pick any 2-digit number, then add 3 to that number three times.

Next subtract 7 from that final number, then repeat.

This exercise is great because your brain must attend to and hold on to several details at once. It also helps you get better at processing and organizing information.

4. Practice Fine Motor Exercises

Practicing fine motor skills is a great way to improve cognitive function after a brain injury, especially if these skills have been impaired. Some fine motor exercises you can try are:

Stacking pennies

Therapy putty exercises

Stretching rubber bands

Jigsaw puzzles

5. Use Your Non-Dominant Hand

If possible, try to use your non-dominant hand during daily activities every once in a while.

For example, brush your hair with your left hand instead of your right hand one day a week.

This not only engages a different side of your brain, it also stimulates your neurons to fire in a new way, which strengthens brain function.

6. Sit Outside and Journal

Sit outside, and write down everything you see, hear, and smell. This engages areas of the brain that are not usually active and will help improve your concentration.

If you have difficulty writing, you can also speak what you observe out loud. The important thing is to just pay close attention to your surroundings.

Cognitive Rehabilitation Exercises for Memory Skills

These exercises can be used to help you improve memory function.

7. Picture Recall

For caregivers, place two different cards from a deck of playing cards face up and let the person view them for 5 seconds. Turn the cards face down.

Now ask them to point to the cards that are named (“point to the Queen”). Every once in a while, ask for a card that was not shown.

Increase the number of cards to a max of 5 as the person progresses.

8. Naming Therapy

This therapy is often used to help people suffering from aphasia recall words, but it’s also a great way to improve memory in general.

One good naming therapy exercise is to have someone else write down several general headings (such as tools, animals, plants, countries, occupation, foods, sports, etc.)

Then try to remember and name (verbally or in writing) as many items in that category as possible.

For caregivers, if the person with the brain injury is stumped, you can give hints. For example, if they can’t come up with any animal names, you can tell them to think of a farm or zoo, etc.

9.Grocery List

Have someone go to the grocery store with you and tell them to choose 2 or 3 food items.

Then, go and find those items without writing down what the person said. As you improve you should increase the number of items you must memorize, until you can recall 7 items.

10. Card Recall

Select four playing cards in sequence (3 of clubs, 4 of clubs, 5 of clubs) and place in random order face up. After five seconds turn the cards face down.

Then turn the cards over in sequence (3, then 4, then 5).

As you improve increase the number of cards in the sequence, allowing one more second of view time for each card added, to a maximum of 7 cards.

Problem Solving and Strategy Cognitive Rehabilitation Exercises

The following exercises can be used to help you improve your problem solving and planning skills.

11. Making Change

Caregivers give the person some coins and ask them to tell you which coins would add up to 35 cents, 54 cents, etc.

12. Color Sudoku

Color Sudoku stimulates similar pattern and logic areas of the brain as number Sudoku does, but is easier for people who might still have trouble manipulating numbers.

13. Tower of Hanoi

The Tower of Hanoi is a great mathematical puzzle that can improve several cognitive abilities.

The puzzle consists of three rods and at least 3 disks. (The more disks there are, the harder the puzzle is.)

The goal of the puzzle is to move all the disks over from the first rod to the third without having a larger disk end up on top of a smaller one.

This not only engages the logic and problem-solving areas of your brain, it also requires you to plan ahead and strategize, which helps train executive functions.

14. Chess, Sudoku, Scrabble, Word Search and Crossword Puzzles

Chess and other brain-stimulating games like Sudoku, Scrabble, Word Search and crossword puzzles are great for activating the left side of your brain and improving your problem-solving skills.

Scrabble, Word Search and Crossword puzzles are especially helpful for developing word recall skills.

15. Wii Video Games

Wii video games are a great way to address impairments in cognitive, physical and/or psychosocial functioning. In recent years, Wii and similar gaming systems have become increasingly popular in rehabilitation settings as therapists have recognized their potential for addressing a variety of treatment goals. The Wii offers activities that are entertaining and engaging which can motivate you to exercise you brain frequently.

Wii Video Games address many different areas. Physical Improvement: Balance, Gross motor skills, mobility and coordination. Cognition: Attention, memory, information processing and reaction time. Psychosocial areas: Social engagement, self-esteem, Mood and quality of life.

And there you have it! We hope you find these cognitive exercises useful on your road to recovery.

16. Brain Training Apps

Brain Training Apps are highly recommended by Neurologists for people with brain injury as they are simple and easy to incorporate into our daily lives. Improve memory, increase focus, and find calm by using Lumosity Brain Training. Peak– Brain Training is a mobile app that allows you to improve your cognitive skills through the use of fun and stimulating games .


How Medical Professionals are benefitting from our Resources

Jessica McManus neuro critical care pharmacist rehab IAES page - THE HERD December 2019~ 1st edition

A Neurology Critical Care Pharmacist, Jessica McManus, wrote to share that what she was thankful for this past Thanksgiving was IAES and the valuable resources we provide to patients, family members, & health care professionals!  She couldn’t wait to bring some Thanksgiving cheer (+ mental stimulation) to her patient.
Jessica visited our ‘Rehab Cognitive Exercises’ page on our website for free downloads and ideas and sent us this photo.

IAES is pleased to hear with more frequency just how many medical professionals are taking advantage of our services. 

image 20 - THE HERD December 2019~ 1st edition

Clinician’s Corner

Randomized Placebo Controlled Trial of IVIG in autoimmune LGI1/CASPR2 epilepsy

Experts at the Oxford Autoimmune Neurology Group (Where the Encephalitis Research Engagement Day will be taking place) and Mayo Clinic, Minnesota have teamed up for the first randomized trial in autoimmune encephalitis. Oxford’s collaboration with a Mayo led trial shows a modest effect of IVIG in LGI1 and CASPR2 antibody seizures.   



image 15 - THE HERD December 2019~ 1st edition

The autoantibody‑mediated encephalitides: from clinical observations to molecular pathogenesis

This paper was just released Oct 27th. It is an excellent review we highly recommend. The useful and clear section on mechanism of action and how autoimmunity gets started in these disorders is particularly helpful. 

This algorithm  covers the evaluation process for autoimmune encephalitis and treatment protocol.



clinical suspicion - THE HERD December 2019~ 1st edition
baC - THE HERD December 2019~ 1st edition

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.

mission2 - THE HERD December 2019~ 1st edition

Your donations are greatly appreciated. Every dollar raised allows us to raise awareness and personally help Patients, Families and Caregivers through their Journey with AE so that best outcomes may 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.

seal2 - THE HERD December 2019~ 1st edition

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.

image 23 - THE HERD December 2019~ 1st edition

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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