Select Page

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

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 DadWillard Wagner

 

 

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

 

 

 

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.

 

 

A Tribute to Father’s on Father’s Day

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

Mothers 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’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

 

 

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!

 

A Tribute to Fathers ~ Our Unsung Heros

June 24, 2018 | Michelle Wilson


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

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.

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.

CONTACT US


352-527-2470

IAES@AUTOIMMUNE-ENCEPHALITIS.ORG

Autoimmune Encephalitis Trivia Playing Cards

Translate »
Exit mobile version