Thanks Dad!

Thanks Dad!

June-21-2020 | Leslie Holland

My dad and my brain go back more than a few decades. When I was two, he convinced my eldest sister she could teach me to read, which I insisted upon in order to move on from coloring books. It wasn’t that I was bored with Dad reading Dr. Seuss to us before bed, it was a fascination with the stories that I wanted MORE.

Among my rather large family—including more than a dozen cousins, with whom our young parents raised more like a collective of siblings—I was given the nickname “The Brain.” I took no offense at the name (until adolescence finally kicked in); rather, I relished reading in a corner when the rest were doing anything else.

It paid off, too. I was immediately admitted to the public school’s advanced program, while my four siblings attended the local parochial school. Dad generally drove us to school and I was the final drop-off, during which time he encouraged my academic achievement in multiple ways, whether quizzing me on spelling words or asking me to solve math problems in my head.

Dad was in advertising, heavily involved in political campaigns, which also set the stage for my career in public relations and marketing—including a stint as a registered lobbyist for the Health Insurance Association of America. As a matter of course, the last three people who hired me asked in the interviews whether I was his daughter. My answer weighed heavily in my favor.

Fast-forward to November 2018… During dinner with my boyfriend, I said something so out of course with our conversation, that Tim was stunned. The next day I had no recollection of it and he insisted I see my internist, who knows me well enough that I was sent immediately for an MRI. Limbic encephalitis was rampant and the obvious diagnosis. (I’ve had epilepsy for nearly 30 years, due to an entirely separate and resolved diagnosis, so all seizure activity was well-controlled, making my memory issues the trigger in my case.)

Upon receiving this new diagnosis, I communicated it to my family. My sister, Suzanne (the one who taught me to read), is now a bioethicist in Washington state, and she arranged for me to be seen at Mayo Clinic for a consult with Dr. Sean Pittock, who agreed out of professional courtesy. Immediately upon meeting me during my office visit, he admitted me and began my steroid treatment.

During this time and since, Suzanne, Dad and I have been in daily text communication. Sometimes it’s related to my encephalitis, though often it’s about our beloved University of Louisville Cardinals, the Chicago Cubs, Thoroughbred racing, or the political antics of the moment. Never has Dad wavered in his commitment to my wellness.

Once it became apparent that working at a job I once loved was no longer possible because of my significant memory issues, he has continued to nudge me along intellectually. He’s convinced “The Brain” will overcome and achieve in new ways. There are days I’m not yet there with his belief, but more often than not, I’m still the kid who’s being quizzed in the car on the way to school.  Happy Father’s Day, Dad!

Terry Holland Leslie Hollands Dad fathers day blog - Thanks Dad!Terry Holland

She Didn’t Stand Alone, She Had Her Father

June-21-2020 | Mari Wagner Davis

 

She did not stand alone, but who stood behind her, the most potent moral force of her life was the love of her father.  Harper Lee.

Father’s Day is a day we celebrate our fathers. We may take them out to dinner, send a card, or make a special phone call. There have likely been times when we have argued or butted heads with our fathers. Times when they have come to our rescue. Times when they have chewed us out for doing something goofy. I didn’t really realize how important my parents, my father is, in my life until I had seizures and was diagnosed with autoimmune encephalitis.

Growing up, my Father’s goal was to make sure we were competent, independent adults. We had to learn to read a map, change our oil, when we were five he helped us open our own bank accounts and made sure we put money in them to save. One thing he couldn’t protect me from or prepare me for was autoimmune encephalitis. But as always, my parents have stood behind me, loving me, supporting me, at times holding me when I cried from the frustration of not being who I was before and celebrating the small goals I have achieved as I have inched along in my recovery.

Events one doesn’t conceive of celebrating such as when I completed day rehab, passed my special driving test so I could resume driving, and when I was able to stay up all day without a nap. (Autoimmune encephalitis makes you celebrate the small things).my Father celebrated with me.

So, when we feel alone, know that whether we still have our Fathers physically with us or not, they stand behind us, cheering us on.

Happy Father’s Day DadMari Davis Father 225x300 - Thanks Dad!Willard Wagner

 

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

 

 

 

trivia fb 300x251 - Thanks Dad!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’s 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.

 

 

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

 

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My letter to Santa ATTENTION: YULETIDE BUREAU  WISH DEPARTMENT

My letter to Santa ATTENTION: YULETIDE BUREAU WISH DEPARTMENT

 

December 23, 2019 | Tabitha Andrews Orth 

My letter to Santa.
ATTENTION: YULETIDE BUREAU 
WISH DEPARTMENT

Dear Santa,
As you know, I have given great thought to my Christmas wish this year.  I hope I have made your ‘NICE LIST”, as my wish is in the form of a favor.

Since I am awake, due to insomnia from the IV Solumedrol infusion I received yesterday afternoon, I thought it was a good time to write you. I guess I didn’t need to tell you that, since you see me when I am sleeping, and you know when I am awake. LOL:)

Sometimes the lessons we need to learn to grow our soul and faith come in the most unexpected forms. I have realized the truth of this and am doing my best to rely on my faith, to celebrate the love and support I receive and do my best to face my adversity.

Santa, I have to be totally naked in my honesty here. As Head Elf, embodied with the Spirit of -now here’s my word finding problem rearing its head… It means to love without qualifying or judging. I can’t remember how to say it Santa, but you get me. How could anyone ever imagine they would get a disease where your immune system attacks your brain?!

I mean if my brain isn’t working right, nothing works right. That’s a hard thing Santa.  We are talking TOUGH challenge here.

Santa, you know this. You have been watching. I don’t have to explain because you have lived it with me. Yeah, I’m totally on the “NICE LIST”.

Sorry, attention span problems, back to my favor. 
But… I have practiced daily random acts of kindness for many years…attention span problems again and paranoia I might not make the cut for that ‘Nice List’.

Santa, this disease has created personality changes that are not the heart of me. It has taken ME away before with episodes of psychosis twice now. I am inside. In my heart, buried deep, I am ME. People were not able to see ME when my brain disease flared in this way, but YOU could!
Sorry, I will try to stay on topic. Attention Span problems, but YOU know this.

Okay, I forgot what I was going to say… LOL. Wait, I’ll reread this and write my main point on a sticky note so I can remember my wish. Why am I telling you that? YOU see me. YOU realize everything.
Ok. Wait just one minute for me Santa. Yes. I am back. Got it. My Christmas Wish. (That is what I wrote on the sticky note. Oops, sorry, forgot. Don’t need to tell you that.)

I am having a problem with worry for my future. I have now faced FEAR.  I have stared it down. I have survived. I get scared sometimes. YOU know I do. My faith and spiritual beliefs sustain me; through them, I draw my courage and do my best to surrender my fear. 

This brings me to that favor I mentioned. My Christmas Wish. 
Gosh, Santa, I need your help.

By the way, Jim says guys like peanut butter cookies and oatmeal raisin the best, so we will be leaving those out in their usual place by the Cocoa. Feel free to use the copper pot I leave out for you to warm up your Cocoa in case you find yourself running late.   Oh, the carrots for the Reindeer are grown by local farmers- I am adding some lovely fresh pears this year…
But, you know that too… Sorry…..
What was I going to say? Oh, right! My Christmas Wish:)

You’ll find an envelope by your nighttime snack. I’ve enclosed all my fears and worries inside. Could you kindly take them from me? That is my Christmas Wish. 

And when you take your leave, by the way, I LOVE that time suspension magic you do- very cool!

When your laughter rings out within and around our home, can you add a bit of Christmas Spirit Magic to infuse your laughter, Joy, and that kind of love I can’t remember the name of …within our home, our hearts and my brain where my fears and worries once were?  By adding your love and laughter to mine Santa, well, that’s a powerful infusion. Exactly what is needed to receive the appreciation of each day.

My family and I laugh a lot Santa. YOU know. My laughter helps my husband, Jim and our son, Matthew. Their laughter helps me. And so, it goes….

P.S.
Should you find other letters written by people with Autoimmune Encephalitis, whether they be drawings by children, a single word, or simply the breath of fear blown inside an envelope and sealed, my wish is that you take these too and leave your laughter.

Oh, make yourself at home as long as you would like Santa. The weather across the Northern Hemisphere is projected to be quite cold. There are extra blankets in the hall closet. Help yourself. When you are working your way across the Southern Hemisphere and get to Sarah’s house in New Zealand since it is Summer there and you won’t need them any longer, you can leave the blankets with her and she’ll get them back to me on her next visit;) 
Pleasant trip and God speed. 
Best Wishes,
Tabitha 

Tabithas letter to Santa facebook Post 300x251 - My letter to Santa ATTENTION: YULETIDE BUREAU  WISH DEPARTMENT

(Originally written December 17, 2014)


IAES invites you to spread awareness of 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.



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


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”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premier organization leading in these vital roles.

seal - My letter to Santa ATTENTION: YULETIDE BUREAU  WISH DEPARTMENT

 

Become an Advocate by sharing your story. It may result in an 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

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Travel Tips for the AE Warrior

Travel Tips for the AE Warrior

December-18-2019 | Mari Wagner Davis, RN

Travel tips  Blog Graphic 1 200x300 - Travel Tips for the AE Warrior

Last Summer my husband and I traveled to Italy to celebrate our 25th wedding anniversary. Not only was it special because it was our 25th anniversary, but special because we had survived 2 years after my seizures and diagnosis with autoimmune encephalitis.  My husband has learned a variety of tricks to help me feel more comfortable in any environment. Traveling overseas, was something we hadn’t done since I got sick.

I found the following tips helpful and wanted to share them:

 

  1. If you haven’t traveled at all since you were diagnosed, consider doing a weekend stay close to home, to help identify any issues like finding the room, remembering which floor you are on) ahead of time.

2. Bring your insurance cards with you, physician’s phone number and important medical records(I had mine copied to a computer disc).

 

3. Make sure you have reservations and confirm them, keep a folder where you can write down confirmation numbers.

 

4. Provide your family members with your itinerary, including phone numbers.

 

5. Identify how to get medical help in countries where you do not speak the language.

 

6. Consider using a travel agent that specializes in planning trips for people with disabilities.

 

7. Plan on addressing jet lag before you leave. Try to adjust your sleep schedule a couple of hours to the time zone you will be in.

 

8. Adjust scheduling your medication schedule as close as you can to the time zone you are traveling to a week or so before you leave.

 

9. While flying try not to sleep too much especially if you will be arriving in the evening.

 

10. Set your watch to local time so you do not get confused.

 

11. Drink plenty of fluids.

 

12. Daylight can reset your internal clock, be aware that you may need to nap to adjust to the different time zone.

 

13, One trick I have found helpful in hotel rooms is to leave the bathroom light on, so I can find it in the middle of the night.

 

14. Finally, be flexible and have a sense of humor!

 

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

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Become an Advocate by sharing your story. It may result in an 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

 

 

Submit Your Story

 

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It is the Season When We Give Thanks

It is the Season When We Give Thanks

Barbara Layt Vujaklija | November 28-2019

No matter the origins in your part of the world, during the autumn or early winter there is usually some sort of harvest or thanksgiving festival. A time for people to share the earth’s bounty with friends and family and gather together to renew and strengthen the bonds we share.

Growing up in England I remember being paraded from school across the village street to the local church which was decked out with bales of sweet-smelling hay, turnips, parsnips, carrots and all manner of other foodstuffs (both fresh and canned or purchased), plus magnificent late flowering plants. The church was filled with the earth’s splendor and the folk of the village. We elementary school children dressed in our best took our place in the choir stalls. After the sermon, we were to sing a few songs that expressed everyone’s thanks for the bounty before us. The foodstuff was later distributed to the poor of the village.

Since coming to live in America at the age of 20, I have discovered a new way of giving thanks to the earth’s bounty and family and friends.  I have found the customs of Thanksgiving here in the USA to be comforting and enriching.

What am I, as someone with Autoimmune Encephalitis, thankful for?

I am thankful for my improving health, and for my family who has stayed beside me during my trials. I am especially thankful for my son-in-law and daughter who came to live with us to be my caregiver. Thanks to Toys-for-Tots and local food drives, I still have the satisfaction of helping those less fortunate than myself.

Here, at the International Autoimmune Encephalitis Society, we asked members what they were thankful for.  Their responses are below:

Thanks for understanding

For this Thanksgiving, I am a warrior who is thankful for my husband, my family, my neighbors, and IAES. These people know that despite having AE I still have a lot of knowledge and am an intelligent woman.

I am so thankful for everyone at the International Autoimmune Encephalitis Society, they help me to feel that I will make it through this, my husband who has learned to deal with my poor memory, my family who supports me, our awesome neighbours and everyone in this world who has learned in one way or another that disabled people have so much to offer.   – Mari Wagner Davis

 Thanks for loving and listening

I am thankful to have a loving kind man that has been with me every step of the way and helps me cope every day. I am also thankful for my best friend who listens and talks to me about anything and whatever I need.  – Katherine Crow

Thanks for life and a new me

Life ?? Thankful to still be alive and getting the chance at the new me. We all know the outcome could always be worse with this disease. Happy Thanksgiving.    -Dayna Burns Rudy Munoz

Thanks to the Lord

For Thanksgiving, I want to say I am very thankful for the Lord being present with me and carrying me through a three year battle with AE. Especially when I was hallucinating in the psychiatric hospital, thinking everyone was plotting to kill me. He gave me a peace that I would survive and be OK. And I was.
-Wayne L. Wall

Thanks for hope, life, love

I am thankful that despite everything I can still have some semblance of a normal life, that my husband still loves me and cares for me despite everything, and I still have hope, love, life, my children, husband and the best of my friends and family in my life. I’m thankful that the chaff has been able to be cut away, so I can enjoy and wholeheartedly love those who are genuine in my life.
-Cathy Bolton

Life and smiles

I am thankful that my son did not die when he first got sick. He was very close. I am thankful that he was given a cheerful, strong and enduring spirit that touches the lives of so many he knows. I am thankful for his smiles and that he always compliments people and wants to care for them. I am thankful for the opportunity to enjoy the gift of every day and the ability to live a full life with him. Happy Thanksgiving!
Lora Strange

This group

I’m thankful for finding this group because many of my questions have been answered here. Also because I don’t feel like a strange person anymore.
Michelle M. Caamaño

Caregivers

I’m thankful for my husband and son who are also my caregivers.
Amy Underwood-Crossley

 

Make a Comment below to share what you are Thankful for

Thanksgiving Musings AE Warrior 300x300 - It is the Season When We Give Thanks

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

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A Tribute to Father’s on Father’s Day

A Tribute to Father’s on Father’s Day

June-16-2019 | Michelle Wilson, Mari Davis Wagner and Lisa Hiller

whitney and father june 2018 - A Tribute to Father’s on Father’s DayMothers may be the most vocal front line when it comes for advocating with a child who has a chronic illness like autoimmune encephalitis (AE), but Fathers are often the rock.  Our daughter Whitney has had AE for at least the last 10 years but was only diagnosed about a year and a half ago.  Since Whitney has received treatment for her AE, her cognitive skills have greatly improved, and she even has a part-time job now, something we couldn’t have dreamed of just 2 years ago.

During the worst of Whitney’s AE, which involved psychosis so severe she tried to take her life several times because of command hallucinations, my husband was the rock. We took turns sleeping so someone was always up with Whitney.  We had to do this for nearly 2 years until the psychiatrist tried clozapine, which finally worked.  All the other anti psychotics either made Whitney worse or didn’t work at all. No one could figure out why because back then, hardly anyone was aware of the link between AE and psychosis. Whitney even had apparent homicidal thoughts.  My husband urged me to lock our bedroom door when it was my time to sleep as he found Whitney staring at me while I slept more than once.

My husband stood by during Whitney’s screaming fits, which sometimes went on for hours.  Sometimes Whitney would start screaming at the top of her lungs while we were driving, threatening to jump out of the car because the voices kept saying we would crash. Awful doesn’t begin to describe it.  And still my husband stood by, helping where he could, never wavering.

Fathers are truly the unsung heroes in families that have children with AE.  For that, I say Bravo!

~Michelle Wilson

Mari Wagner father day 2019 4 - A Tribute to Father’s on Father’s Day

Mari’s Father

 

I have AE, it’s been a little more than 2 years since I was diagnosed after having seizures at work. I want to honor my father this Father’s Day. It was him who taught me that hard work paid off, he taught me how to drive, got me jobs when I needed them in the time between high school and college. He gave me the gift of passing down his knowledge on one of my favorite things- gardening. My parents have helped stand by me with my husband as I have struggled to recover from this awful, no good, very bad days illness. Happy Father’s Day Dad

I also honor my husband Geoff Davis who has been an amazing Father. When I got dick he became the strength and source of comfort for our children as well as making sure I was always heading in the right direction. Without these two men I’d have been lost. So Happy Father’s Day to two men who best know how to be Fathers. I am blessed to have you both in my life.

~Mari Davis Wagner

 

fathers day 2 - A Tribute to Father’s on Father’s Day

 

Our Dad….Where do we start?  He’s our hero.  He makes us laugh and has made us the strong girls we are today.  Da, we love you so much!  Even on your bad days.  If this illness has taught us one thing,  it’s that the love you have for your family can get us through anything!  You really are our special Dad and someone your girls are proud to look up to.  XXX.   For Terry Hiller our Daddy  ~ Lisa Hiller, Lollys Lollol, Louise Hiller

 

 

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

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Mother’s Day Tribute

Mother’s Day Tribute

May 12, 2019 | Mari Davis, Barbara Layt Vujaklija and Elaine Contarino-Cannella

IAES would like to wish all Mothers a very happy Mother’s Day!

You are dearly loved.  Meet three very special Moms counted among you.

 Grace

My mother’s name is Grace. It fits her perfectly. Since my illness, she has been one of my biggest supporters. She is able to find the smallest kernel of progress from a story of frustration and point it out to me. She patiently listens even if I tell the same story to her more than once. She was a great mother before my illness but I have come to appreciate so much more about her since I’ve gotten autoimmune encephalitis. I have some grace in my life and it is her.

~Mari Wagner Davis

 Tanya

Mother’s Day from a Mother’s Perspective

My adult daughter is my full-time caregiver. When I became too sick with Autoimmune Encephalitis to take care of myself and run my household, she gave up her career and she and her husband moved in with us. At the time I was having a lot of falls and my husband, who is 8 years older than I and has COPD, was unable to pick up the slack or me. My daughter and son-in-law’s family included their single working daughter with a toddler and a high school senior, we had a big house. So, everyone moved in to take care of poor old me. We were now a family of seven under one roof.

My daughter took over running the household and all the cooking. When she discovered I was making mistakes with my medications, she took over managing that complicated task and started implementing safety measures around our home as I was a huge fall risk. She also started taking me to my doctor’s appointments as hubby was getting worse about driving in the city, and we only had half of a memory cell between us. My smart girl knew what renewals I needed for medications and what other questions we needed to ask my doctors. She kept track of changes in treatments and in general what the doctors were saying. In short, she was a life saver.

Although I live in the USA now, I was born and raised in England.  As my husband was in the US Air Force, we spent 10 years in Germany while my daughter was growing up. In Europe it is common to have multi-generational households with the young taking care of the elderly and I guess this has rubbed off on my girl. I am beginning to see this trend here in the USA within the chronically ill communities and am glad to see it. I understand not everyone can just give up their career like that, but we were able to get some money from the VA for our daughter to do housekeeping for my husband and pooled all our resources to make it work.

Knowing that my daughter has my back has given me more peace of mind than I can express. My memory and cognitive abilities are still very poor. My sense of time, lousy. My energy levels very low. And the doctors tell me that I am in remission and suffering from brain damage. Even in this stage a trip to the ER or a new doctor can be terrifying but with my daughter by my side I know I am in safe hands.

~Barbara Layt Vujaklija

Helen Contarino

September 1939-November 2017

As I knew you

A woman of great strength and inner positive peace, the warmest and kindest soul to walk through life. She loved, laughed, and danced, her touch like no other, her embrace just as memorable.  She was a champion and protector to those she loved and befriended.

She was my mother, my heart, my friend, my champion, my protector, my strength, my teacher, my everything…Mother’s Day was every day for me because I had her and she had me.

Happy Mother’s Day Momma, you are in my every thought every minute of every day.  I so miss you!

Love you,

Elaine

 

 

 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”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, 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.

You generous Donations allow IAES to continue our important work and saves lives!

My letter to Santa ATTENTION: YULETIDE BUREAU  WISH DEPARTMENT

My letter to Santa ATTENTION: YULETIDE BUREAU WISH DEPARTMENT

 

December 19, 2018 | Tabitha Andrews Orth 

My letter to Santa.
ATTENTION: YULETIDE BUREAU 
WISH DEPARTMENT

Dear Santa,
As you know, I have given great thought to my Christmas wish this year.  I hope I have made your ‘NICE LIST”, as my wish is in the form of a favor.

Since I am awake, due to insomnia from the IV Solumedrol infusion I received yesterday afternoon, I thought it was a good time to write you. I guess I didn’t need to tell you that, since you see me when I am sleeping, and you know when I am awake. LOL:)

Sometimes the lessons we need to learn to grow our soul and faith come in the most unexpected forms. I have realized the truth of this and am doing my best to rely on my faith, to celebrate the love and support I receive and do my best to face my adversity.

Santa, I have to be totally naked in my honesty here. As Head Elf, embodied with the Spirit of -now here’s my word finding problem rearing its head… It means to love without qualifying, or judging. Can’t remember how to say it Santa, but you get me. How could anyone ever imagine they would get a disease where your immune system attacks your brain?!

I mean if my brain isn’t working right, nothing works right. That’s a hard thing Santa.  We are talking TOUGH challenge here.

Santa, you know this. You have been watching. I don’t have to explain because you have lived it with me. Yeah, I’m totally on the “NICE LIST”.

Sorry, attention span problems, back to my favor. 
But… I have practiced daily random acts of kindness for many years…attention span problems again and paranoia I might not make the cut for that ‘Nice List’.

Santa, this disease has created personality changes that are not the heart of me. It has taken ME away before with episodes of psychosis twice now. I am inside. In my heart, buried deep, I am ME. People were not able to see ME when my brain disease flared in this way, but YOU could!
Sorry, I will try to stay on topic. Attention Span problems, but YOU know this.

Okay, I forgot what I was going to say… LOL. Wait, I’ll reread this and write my main point on a sticky note so I can remember my wish. Why am I telling you that? YOU see me. YOU realize everything.
Ok. Wait just one minute for me Santa. Yes. I am back. Got it. My Christmas Wish. (That is what I wrote on the sticky note. Oops, sorry, forgot. Don’t need to tell you that.)

I am having a problem with worry for my future. I have now faced FEAR.  I have stared it down. I have survived. I get scared sometimes. YOU know I do. My faith and spiritual beliefs sustain me; through them, I draw my courage and do my best to surrender my fear. 

This brings me to that favor I mentioned. My Christmas Wish. 
Gosh, Santa, I need your help.

By the way, Jim says guys like peanut butter cookies and oatmeal raisin the best, so we will be leaving those out in their usual place by the Cocoa. Feel free to use the copper pot I leave out for you to warm up your Cocoa in case you find yourself running late.   Oh, the carrots for the Reindeer are grown by local farmers- I am adding some lovely fresh pears this year…
But, you know that too… Sorry…..
What was I going to say? Oh, right! My Christmas Wish:)

You’ll find an envelope by your night time snack. I’ve enclosed all my fears and worries inside. Could you kindly take them from me? That is my Christmas Wish. 

And when you make your leave, by the way I LOVE that time suspension magic you do- very cool!

When your laughter rings out within and around our home, can you add a bit of Christmas Spirit Magic to infuse your laughter, Joy, and that kind of love I can’t remember the name of …within our home, our hearts and my brain where my fears and worries once were?  By adding your love and laughter to mine Santa, well, that’s a powerful infusion. Exactly what is needed to receive the appreciation of each day.

My family and I laugh a lot Santa. YOU know. My laughter helps my husband, Jim and our son, Matthew. Their laughter helps me. And so, it goes….

P.S.
Should you find other letters written by people with Autoimmune Encephalitis, whether they be drawings by children, a single word, or simply the breath of fear blown inside an envelope and sealed, my wish is that you take these too and leave your laughter.

Oh, make yourself at home as long as you would like Santa. The weather across the Northern Hemisphere is projected to be quite cold. There are extra blankets in the hall closet. Help yourself. When you are working your way across the Southern Hemisphere and get to Sarah’s house in New Zealand, since it is Summer there and you won’t need them any longer, you can leave the blankets with her and she’ll get them back to me on her next visit;) 
Pleasant trip and God speed. 
Best Wishes,
Tabitha 

(Originally written on: December 17, 2014)


IAES invites you to spread awareness of 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.



Donate to Support IAES and our Life Saving Mission


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”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, 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.

A Tribute to Fathers ~ Our Unsung Heros

A Tribute to Fathers ~ Our Unsung Heros

June 24, 2018 | Michelle Wilson


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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”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, 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.

It’s OK, Daddy’s Here

It’s OK, Daddy’s Here

June 17, 2018 Ι Barbara Vujaklija, RN

The parents of our AE kids have a tough road no one can dispute that.  Usually we hear from the Mothers as women tend to seek out support more than men in our society.

So what about our Dads? Are we to assume that as we don’t hear much from them because they are not engaged with their sick young ones?  No.  I think that some men have a little more trouble asking for help and bearing their souls than we women do. My husband comes to the doctor with me if my daughter is not available but never offers up opinions unless asked by the doctor. My daughter on the other hand usually says too much.

I remember when my daughter was 7 and stepped on some glass, she had to go to the ER to have it all removed. She was terrified and I was young and sure she would loose her foot. My husband stood by her head and repeated softly “It’s OK, Daddy’s here” It calmed her and me too. In my work as an aide and a nurse I saw a lot of children in Hospice and while moms tidied the beds fetched and carried needed things Dads often comforted, held undersized teens in their arms like babies, read stories and even just watched TV or played video games.

Did those Dads feel pain at having a sick kid? You bet I’ve seen them cry outside the kids room or at the kitchen table, curse the disease as they went to work, bring home a treat or just stand and stare off into space. I spent hours in a busy week listening to Moms expressing their fears and grief. Going over what the doctor said to try to find hope. And just listening to any thing they wanted to talk about. But the conversations I have had with Fathers were more taciturn, a light description of the day’s events maybe or phone messages. Rarely did a Dad express his grief or fears. No talk of what the future could be like, or what does the doctor think. I always assumed that the quiet ones got their information from their wives in private moments. But wondered if they ever grieved out loud, railed against fate or cried out their fears openly.

So this Father’s day I want to say to all of our Dads that I have seen your pain and you were no less of a man for showing it.  You have gentled your child in distress. Tried to calm them and encourage them.  Advocated for them. Searched for answered. Stayed up late into the night reading to better understand AE. Held your wives, reassured your other children who are worried about their sister or brother.  I know you love and care for your children deeply and feel the burden of being the strong one.  I know you hurt and fear. And from all of our AE kids no matter what age I want to say thanks for being there and Happy Father’s Day.  

This song expresses the lessons Fathers want to instill in their children.  Be BRAVE out there! 

 


Donate to Support IAES and our Life Saving Mission


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”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, 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.

It’s OK, Daddy’s Here

It’s OK, Daddy’s Here

June 7, 2018 | Trystn K. Daley RN, BSN

Recently, I completed a Population Health practicum for my graduate nursing program. As part of the course, I spent 105 clinical hours at a local hospital of which I chose to work with patients diagnosed with autoimmune encephalitis as my population of focus. The aim of the clinical was to look at the health needs of the population and using evidence-based research and collaborative effort with the health care team, design intervention that supports the overall health of the population. I focused on examining diagnostic processes when patients present with initial symptoms.

My career as a clinical RN has mostly consisted of inpatient neuroscience nursing and I chose to work with the AE population due to my special interest in improving outcomes for patients suffering from AE. As I went about the course, I quickly learned that International Autoimmune Encephalitis Society proved to be an excellent resource to myself as a health care clinician and overall a dedicated group of people who work tirelessly to improve the health and lives of patients diagnosed with AE and their families from all over the world.  

My goal was to retrospectively look at what diagnostic tests were being done on patients diagnosed at the clinical site I was working with and to see how those findings lined up to the Lancet Neurology position paper titled, A Clinical Approach to Diagnosis of Autoimmune Encephalitis, written by Dr. Josep Dalmau and his colleagues. This paper guides clinicians to arrive at a diagnosis prior to the antibody status result which can take some time as it is most often sent out of facility and additionally having no antibody present does not eliminate a diagnosis of AE as not all antibodies causing AE are yet known. Evidence strongly suggests that earlier identification and initiation of treatment lead to a better prognosis for the patient thus standardizing diagnostic approach is an important intervention to support improved patient outcomes. Additionally, symptoms of AE mimic other disorders so that is another challenge to arriving at diagnosis that I identified in my research that can affect timeliness of treatment.

Early in my research, while doing an online search for existing community resources for Autoimmune Encephalitis patients, I found and reached out to International Autoimmune Encephalitis Society and was quickly contacted by an administrative team member. The admin team helped answer many of my questions about the issues patients face with being appropriately diagnosed initially as well as the long-term health difficulties that the population experiences. I found the admin team to be very knowledgeable in pointing me in the direction of evidence-based research articles and additionally they were willing to share their own personal experiences in facing an AE diagnosis. That information was most valuable to me as my sole purpose of working towards being a nurse leader is to help people by improving the quality of the care that they receive and to promote better health outcomes.

I was most impressed as I observed the International Autoimmune Encephalitis team working together behind the scenes to address individual needs each day and most days late into the night and in their commitment to providing a supportive place for those newly diagnosed to turn where there is a group of people who truly care and who also deeply understand.

It is with sincere gratitude that I thank International Autoimmune Encephalitis Society for your dedication in not only advancing care and outcomes through educating the public and health care professionals but also in directly addressing the needs for the individuals you work alongside who are facing a diagnosis of AE. As I continue to work towards my professional goal of being a nurse educator and teaching our future generations of nurses, it is my hope that more nurses and providers have the tools and knowledge needed to recognize Autoimmune Encephalitis early on so that earlier diagnosis and intervention is possible. I will carry what I learned from all of you forward with me and close to my heart as a reminder of what we are fighting for.  


Donate to Support IAES and our Life Saving Mission


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”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, 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.

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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