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June 20, 2021 |by Tabitha Orth and Mari Davis

IAES would like to celebrate the fathers and men in our lives. Every year in June we have a day that celebrates Fathers. It is our belief that we should celebrate these men every day. These are the men that have helped us become who we are. These are the men who have shown us support, told us stories with a sparkle in their eye, laughed and cried with us, and danced the dance of life with us! It is our sincere hope you enjoy the two stories below that highlight the role of the magnificent men in our lives….Happy Father’s Day!

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by Tabitha Andrews Orth, IAES President

I was 27 years old when my Dad died. It was unexpected. He’d been recovering from a hip replacement surgery and wasn’t feeling at his best. I’d gone to visit him that morning before I was due at work and kissed him good-bye on the forehead, which was my custom.  “I’ll see you tonight” I called out as I walked down the hall with a wave, my back turned to him.   That was our final good-bye.

I’ve lived more that half my life without the physical presence of my Dad. Yet, he has always been a strong present force in my life. Love never dies. That’s the wonder of love. It really is everlasting.

As a child, I remember looking up to my Dad. I mean that quite literally. He was a tall man. I’d look up and up with my neck bent back to see his face. Dad had the bluest eyes that twinkled with laughter, mischief, courage or confidence. They had a sparkle to them that dialed in on the emotion of the moment. He could say more with his eyes than he often did with his words. Yet, he was a verbose and highly entertaining storyteller. A gift few of us possess. His stories, lessons and banter took you on an adventure, or made you really reflect on a topic long after the conversation ended.

I always felt safe and protected as a child with Dad by my side. If I was scared, my fear never took hold because I knew nothing bad would happen if Dad was with me. There is a magic some father’s have in making us feel safe and loved. I was blessed to have a father who created magical moments daily. That’s not a common trait. I recognized that as a child. It was something I valued about my father even more as I grew older. I knew he was an uncommon man.

This Father’s Day some of you will be marking this day without your Dad by your side.  Whether it is your first Father’s Day since your Dad’s passing or, like me, years without your Dad. Our minds still fill with memories of our father. The laughter, special moments or occasions will stand out freshly in our memories.  We spend the day thinking about our Dad and appreciating the time we had together. That will never change. Our love never dies. It is everlasting. My relationship with my father didn’t end on March 8th, 1985, it simply changed. Happy Father’s Day, Dad! I love you!

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1963 Newport Harbor, California. Tabitha at the helm, age 5. Pictured with her Dad, older sister and younger brother.

By Mari Davis

Four years ago, I went to work as a nurse case manager like I had done every other day. I had not had any different or odd symptoms that I recognized before this fateful day. This was during a time in our lives that my husband, as an athletic trainer, worked long hours. We were both busy. At times, and on some days, we would see each other only in passing. If there were any signs of anything happening to me, he didn’t have an opportunity to see them.

While at work, I shared an office with a nurse I have worked with for twenty years or so. She recognized something was not right. She took my keys from my purse. Oddly, I was not upset when I could not find the car keys. Normally I would have been very bothered by this. I went to the unit to do some needed work and while there began to have seizures. In the meantime, as soon as I had left our office, the coworker who had taken my keys called my husband to tell him that she felt something was wrong with me.

After being diagnosed with sero-negative Limbic Encephalitis, I was treated with steroids, IVIG, plasmapheresis and was started on anti-seizure medications to help control my remaining seizures.  After treatment was completed and I was stabilized, I was transferred to a rehabilitation facility. I had a short-term rehab stay and was then discharged home where I started rehabilitation therapy from home. 

During this time, my husband had to call my parents, children, siblings, and friends to let them know I was in the ICU and explain that the doctors were trying to figure out what was happening and what my diagnosis could be.

He had to figure out bank accounts, college payments, bills, etc., all the things that I had previously taken care. My husband is not a person to get worked up or upset about things. He has always been that person who takes life and issues step by step to work everything thru. He was able to figure out my previous job’s benefits such as sick days-, short- and long-term disability. These are all things I had taken care of previously and did this kind of work as part of my profession. In short, my husband had to step up and step into taking hold of the wheel of a well-oiled machine that, in a sense, had suddenly gone off the tracks.

Families and friends often wonder, how can they help the person with Autoimmune Encephalitis? What will be felt as helpful? What might make things worse? There are many ways to offer help to an AE warrior and their family, but one of the most important is to realize the person with AE is still the person they know and love with some changes. Personally, I can share that my husband continued to see the parts of me that were still the same. I still had/have a sense of humor. My husband could and still can see thru the illness or disease to the real person I am and have always been. That although I now had memory issues, I was still smart, and with direction, I could do many of the things I had done prior to the onset of my disease.

As time went on, he figured out what I had trouble with. As with many AE warriors, I have memory issues for those things and events that have happened within the few years prior to diagnosis.  For example, if I was cooking and couldn’t find a pan, I might call him. He became familiar with where everything was in the kitchen and household so he could help direct me and this in turn gave me confidence. He encouraged me to be as independent as safely possible. Chores I was normally in charge of such as making a grocery list, or doing laundry, he encouraged and helped me with which gave me the confidence necessary to accomplish them independently.

I learned many safety strategies during my rehabilitation. For example, I always use a timer when cooking because I do not have a sense of smell and need that safety net so I either don’t forget I have something in the oven or fall asleep. I had to take a special driving test to continue to drive. To be honest, I learned many strategies that made me a much safer driver than I previously was. My husband takes time to remind me of the things I can do and remain good at. Many of us still possess those brain pathways that retain the neural networks that house many things from our past and are still in our long-term memory. If stores and streets and buildings and all other things in town have changed, as we know they always do, my husband has the patience and takes the time to review all these things with me. He helps me navigate the fastest and easiest way to get here and there. If I need to park, he will go over the best place to park and how to get there.  

I have learned that many of the things I chalked up to having a great memory where more likely due to routine. When we have routines, such as certain places we park or certain days we grocery shop, this eliminates the need to think things thru. It is simply routine.  When I was in day rehab, I really struggled with my disability. My routines and various ways of doing everything were completely disrupted. At times I felt as though going to rehab just reminded me of my disease and disability and how much my life had changed.  Each day before I left for rehab, my husband danced with me. He tried and did find things that I liked and loved, and he would do them with me to lift my spirits, give me confidence and help me move forward in a positive way.

I suppose much of this means being in tune with and paying attention to the person with AE or other brain diseases. Identifying things they are still able to do, helping them to not become frustrated, and encouraging or simply empowering them to become the best they can be. Importantly, being a part of this process as much as possible. Many of us may need reminders or help staying mentally and physically organized. We may not have needed this assistance in the past. My husband has found ways to assist me to do this the best way possible for myself and has helped me to find new strategies to accomplish independence and success. He has encouraged exercise by us doing it together. AE as well as many other illnesses and events, such as coronavirus, can and has left many feeling isolated.  Doing things together, such as exercise or helping me to learn tasks that in the past were routine, not only helps the patient but also build the bond between the caregivers/loved ones and patients.

For husbands and fathers and many men, when the women and children in their lives develop Autoimmune Encephalitis they step into roles or tasks that they may not have previously done. They not only support the women and girls with AE but also learn and support the family as a whole.  They are our main supporters, while still managing their own feelings. The role of these men may be the one their children, families and friends turn to for comfort and explanation all the while managing the homes, their own feelings and being the major mental, physical supporter, and cheerleader of the women or child. These are the men the AE warrior women and children depend on. The family depends on them for their support and strength. In the past, many women have commonly taken the role of holding the family together by performing the daily responsibilities we are all familiar with that need our attention. These men have stepped up and into that role without hesitation!

So, we celebrate Father’s Day! We celebrate the men in the lives of AE women and children! We thank you!  For without you, we would most certainly not have made such strides in our recovery and AE journey….

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Mari Davis and her husband

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Mari Davis with her family in front of the home she grew up in

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 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

 

 

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’ 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. 

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For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

 

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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