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From on the Fritz to on the Mend: The Invisible Realities of Brain Injury Recovery

From on the Fritz to on the Mend: The Invisible Realities of Brain Injury Recovery

October 14, 2020 | By WhereAreMyPillows.com 

This post is part of the #WhereAreMyPillows monthly blog column for the International Autoimmune Encephalitis Society and has been republished from www.wherearemypillows.com

It’s a lovely day in the neighbourhood. The sun is blooming, birds are shining, flowers are sing—wait; that’s not quite how it goes.

Then it hits you: oh yeah, your brain is injured.

These days, my mind runs loops that straddle the line between normal thought and garbled logic. Innocuous at first glance, maybe; but troublesome when the loops wind threads of tangled reality into a web too bulky to slash through. At the heaviest of times, the circuit breakers trip and the fuses blow.

My mind becomes toast. Good luck reviving it.

Deep breaths, a protracted pause, and patience until the system comes back online. Then, the cycle begins again.

Such is the daily struggle of recovering from brain injury. In my case, mine was acquired in the form of autoimmune encephalitis: brain inflammation caused by my immune system attacking healthy cells in the brain. Plenty of other things—such as a stroke, seizure, tumour, oxygen deprivation and head trauma—can lead to similar cognitive spirals. While immediate medical care may halt the progression of further damage, patients are often left with a lonely and challenging aftermath to contend with.

Recovery is invisible, slow, unmapped, and uneven.

When your brain goes on the fritz

After 5 years of cognitive decline, my level of confusion and disorientation progressed to the point of hospitalization in 2019. The emergency room admitted me for having “an altered state of consciousness.” A lumbar puncture, EEG, MRI, PET scan, and numerous needle pokes later, I was diagnosed with seronegative autoimmune encephalitis.

In many respects, this side of the patient journey is actually the easy part. When you’re hospitalized with your brain on the fritz, you often lack the wherewithal to realize the extent of your cognitive issues.

Sometimes you’re left in a coma. Sometimes you’re conscious, but not actually present in the manner someone awake should be. Sometimes your memory is gone, only to be pieced together later with stories told by the people who witnessed your delicate state.

For me, the severe stages of my brain impairment shielded me from much of the suffering I would have experienced otherwise.

The beginning stages of the caregiver journey? Different story. I am incredibly thankful for my mom, who sat by my side nearly every day, functioned as my mouthpiece when I couldn’t advocate for myself, and endured the emotional anguish of seeing her daughter’s mind slip away. She’s the one who bore the brunt of my time in hospital, left on a rollercoaster of uncertainty and fear as doctors did their best to ultimately diagnose and treat me.

In any case, you’re typically afforded a level of respect and understanding from people that dissipates as time wears on. First mention of the words “hospitalization” and “brain injury” elicits the tacit knowledge that something severe has occurred, patience is warranted, and sensitivity is appreciated.

When your brain is on the mend

You’re discharged from medical care. The moment you step outside the facility, you feel like running a victory lap! But your body has other plans.

In fact, you go home, shower, and crash into bed for the rest of the day. It turns out you’re far more fatigued than you realize, and spend the next few weeks (or months) unable to gas your energy tank up to full.

I never knew how out of sync my emotions, body, and cognition could become until I dealt with brain injury. I came to learn firsthand how the wellbeing of one can exist independent of the others, leaving you with the scaled back capacity to function in the ways you could before.

It can feel like a scheduling problem, not so different from trying to coordinate a coffee date between 3 friends. Sometimes your schedules line up, and things move forward smoothly; sometimes your schedules are off, and you’re left waiting for a future that can’t come soon enough. Sometimes you go ahead with just 2 of you; sometimes schedules change unexpectedly, and you forge ahead alone.

In the early stages of recovery, my emotions, body, and cognition would hardly cooperate. I would feel like writing a message to a friend, but the words just wouldn’t come. Or my brain would let me complete some work, but before long I would need a nap. Or I would have the energy to cook, all the while judging myself for how clumsy and uncoordinated my post-injury actions had become.

“Be kind to yourself” makes sense intellectually, but that’s easier said than done. You’re thrust into a foreign reality, with a new brain that takes time to reacquaint itself with your body and emotions. And you’re likely underprepared for this adjustment. Many brain injury survivors are left without proper rehabilitation services or counselling support once they leave the hospital. It can feel like you’re left, forgotten, all alone.

At first, friends, family, and coworkers are generally kind and empathetic in the wake of your injury. But recovery takes longer than most people think. You start to realize that life goes forward for others at a pace you can’t compete with.

You soon develop a sense of alienation and isolation to work through, on top of your compromised cognitive state.

brain, neuron, model

The lingering issues that persist months later

Before I get much further, I should clarify: brain injury can look different from person to person. Some people experience a full recovery in a short period of time, while others are left with permanent deficits years later.

I have an unusual case of autoimmune encephalitis that has involved multiple remissions and relapses over 6 years. Right now I’m recovering from a relapse, which has reminded me all too viscerally how devastating it is to lose your cognitive function. This post is my attempt to make sense of this time period, as well as capture the commonalities I’ve noticed between myself and other brain injury survivors. Here are some of the lingering issues that exist for those of us in recovery:

1. Your brain takes time to work itself out of the twilight zone.

It’s hard to truly conceptualize what it’s like to lose brain capacity, unless it’s happened to you. Brain fog is one thing; brain injury is another. With the latter, it feels like critical connections inside your hardware have gone missing.

Recovery is a slow process to put your hardware back together, or to learn how to compensate without it.  Daily tasks require an immense amount of focus, concentration, and time to accomplish—if they’re within your reach at all. For example, the coordination required to drive and process information from road signs, changing traffic signals, and the movement of vehicles around you may take awhile to become comfortable with again. Or processes you could formerly run on autopilot—like brushing your teeth, making coffee, or getting groceries—may require a new level of concerted effort and mental energy.

Some days, the psychiatric involvement is strong. I think the following may be what some would call derealization or depersonalization. More than just a fried brain, it seems like there’s a layer of reality I’ve lost the ability to tap into.

My brain feels like a foreign place I have to reorient myself within from moment to moment. Various facets of my cognition are disjointed, such as my memory, concept of time, coordination between inner thoughts and speech production, executive functioning, and processing speed. I hold the premise internally that my body is on the mend; but that statement doesn’t jive too well with the lived experience, boots on the ground. I lose the sense for what’s actually happening inside my brain, as if somehow the existence of “me” is scattered elsewhere along a different dimension.

For now, I take comfort in knowing that these alarming neuropsychiatric elements are expected—that it’s going to be some time before I notice the ways in which my brain is recovering. But it’s hard to overstate how months of living with cognitive deficits and misperceptions of reality evokes a type of hardship that permeates into all aspects of your life. As much as I try not to dwell on these challenges, it’s sometimes overwhelming to deal with the emotional pain of losing my mind and attempting to regain it again.

2. Recovery isn’t linear, and the uncertainty is destabilizing.

I can never quite predict my level of functioning from day to day. As I alluded to in the previous point, my cognitive playground is constantly changing.

Generally, you might assume that “recovery from injury” will involve steady increases in improvement back to a baseline of good health. But this isn’t the case when it comes to the brain (and many chronic illnesses). It’s much more like a constant rollercoaster that lurches up and down, forwards and backwards, at any and all inclines. And at any range of velocities.

This means I’m constantly reorienting myself to an unfamiliar toolkit. Some days I can write 500 words before the fatigue kicks in; sometimes I spend a couple hours cobbling together 50, before needing to retire my mental efforts for the day. Some days I tidily knock off 10 items on my to-do list, while other days it’s a struggle to handle 2. This, coming from a “doer” and “go-getter,” is an especially tough pill to swallow.

The level of uncertainty that comes with brain injury recovery makes it hard to stand on your own two feet. It’s hard to schedule future plans, let alone commit to the responsibilities of school or work, when your functioning is inconsistent and unpredictable.

You’re caught in a catch-22: you want to orient your present self towards a destination; yet it’s hard to decide what that destination should be, since you have little idea of what capabilities your future self will arrive with. Maybe you’ll have the capacity to rise to the demands of the situation; maybe you won’t. In the latter case, you become prone to overextending yourself unless you learn to honour the limits of your body.

Any setback messes with your head, leaving you to question your judgement of past progress and how reliable your memory is. And with some conditions, such as autoimmune encephalitis, setbacks come with the question of whether the cause of the brain injury may be resurfacing—or if the cause was never fully resolved in the first place.

The ups and downs of brain injury recovery are destabilizing, as you never quite know how to evaluate your present state or forecast your future state.

3. You can’t relate with people in the same manner as before.

“How are you” is a simple question, yet I usually end up stumbling through the answer. There’s multiple layers to the truth here—which one is appropriate for the context at hand?

In many situations it’s easier to answer “I’m fine” than to delve into any details. Plus, it’s really more of a pleasantry than an honest question. You’re not going to tell the barista that you’re feeling frustrated trying to function with half your brain. But things get tricky when it comes to friends, family, and coworkers.

Yes, part of them wants to hear how recovery is going; but it’s also natural for them to assume a recovery quicker than how it really is,  and to have plenty of other considerations on their mind. I can tell some people get bored hearing me discuss my health, and I can’t blame them: there is so much more to life beyond the strange goings-on of my brain! I’d like to be discussing (hypothetical) cool places I’ve been going, the latest thing I’ve learned, or the hobbies I’ve taken up, too. But my reality is different. It’s dominated by medical appointments, naps, and attempts to implement strategies for overcoming my cognitive deficits. The energy to diversify my interests is few and far between.

As a result, I often end up glossing over how I’m really doing, and stretching myself to have an organic interaction based on the conversational inputs from the other person.

This puts me in a weird and uncomfortable headspace. You end up reflecting on your slow pace of recovery, questioning your mental preoccupations, and overthinking the mechanics of how to relate with others. You consider “maybe if people showed genuine interest in how I’m doing, I could get the truth off my chest and cleanse my mind for discussing other topics,” then start to wonder whether you’re botching all your social interactions. Then you talk to someone whose general attitude screams “just pull yourself together already!” and suddenly remember why you’ve grown accustomed to minimizing your inner state.

Besides the emotional complications, there’s the difficulties posed by the brain deficits themselves. My verbal fluency and processing speed are heavily impacted, which makes it hard to catch the rhythm of group dynamics and figure out how to contribute to conversations. Try as I will to be present in the moment, it’s hard not to become anxious and self-conscious as I witness my brain faltering in ways that used to be reliable.

Unfulfilling social interactions can leave you with an acute feeling of grief as you’re reminded of how radically your brains have been altered. The result is a unique sense of loneliness as you fail to acknowledge your inner world to others.

brain, birds

Making the best of what you have today

It’s easy to feel discouraged by the invisible realities that come with brain injury. There’s a lot to contend with in the aftermath of such a devastating setback. 

However, the field of neuroplasticity has taught us that the brain is a resilient organ. It can adapt to compensate for injury, restoring functionalities that were once severely impaired.

My own recoveries are a testament to what’s possible: I’ve bounced back from autoimmune encephalitis relapses several times, going from as low as 25% of my baseline level of functioning back up to 95-100%. A few months after my hospitalization last year, I became well enough to find my feet as a full-time Communications Manager, travel abroad, and build a life beyond any health limitations.

But what can you do in the meantime, while recovery feels out of reach? Frankly, this is a daily reassessment for me that I hope to cover in a future post. But for today, I have a couple quick suggestions.

If you have the mobility, get outside. Fresh air and walks in nature are good for your health, restorative for the soul, and help with getting you out of your head.

If you’re stuck inside, don’t isolate yourself further. Find an online community, if you don’t have a trusted friend or family member you feel comfortable reaching out to. Facebook groups are a wonderful outcome of the polarizing social media platform. Even if you’re not up for conversation, it’s powerful to read what others are posting and to realize you’re not alone.

For more insight into what autoimmune encephalitis recovery looks like, read more below or find me on Instagram, Facebook, or Twitter.

 

wherearemypillows bio

WhereAreMyPillows is a seronegative AE survivor from Canada. Her favourite activities include writing on her health blog, taking photos, doing yoga, and finding her next spot to take a nap. 

Join her on the IAES Facebook group, and on her WhereAreMyPillows Facebook PageInstagram, and Twitter pages #wherearemypillows

 

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.

 

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Prithima’s Story

Prithima’s Story

September 30, 2020 | By Prithima Sunasee

A NOTE FROM PRITHIMA’S HUSBAND, REELY 

I connected with Tabitha at International Autoimmune Encephalitis Society through Facebook  thanks to my wife’s cousin soon after my wife was evacuated to the UK. As I was trying to understand the illness better and make sense of things, Tabitha was a vital sounding board for many of my concerns surrounding the research and treatments out there and what to expect. She was always a text and phone call away when I needed her, especially when I was trying to understand the side-effects of different medications. She guided me through every assessment and report I received regarding my wife. Knowing who to turn to for support during a crisis can help you feel less overwhelmed and more able to manage your feelings and reactions, with the knowledge and support from Tabitha, brought hope and peace of mind.

—-

So my journey starts when I returned to Dubai after celebrating my daughter’s 1st Birthday in the UK with my parents and my family in Hastings in July 2016.
Everything went beautifully and we had a great time.

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My dad was battling Myeloma, a form of cancer. He had being fighting this for a while but had managed to come to my wedding in Dubai, and come to the birth of my daughter in Dubai, and celebrate her 1st birthday in the UK. He was a very strong man and during his illness he also suffered from STEVEN JOHNSON syndrome, which was when certain medications don’t react well together and cause a burning effect on your whole body, and his whole body was covered in blisters, it was extremely painful but he was always so strong and never ever gave up. He was our hero, especially mine, I would tell my dad everything and anything and he would always advise and guide me.

Once back in Dubai, I continued with my work for a trip support company as an Account Manager. I had worked in Aviation for over 15 years and it was an industry I was always passionate about.

But in November 2016 I started feeling unwell and was getting a headache, and I knew instantly this was not a normal headache. I knew something wasn’t right, but for a few days I ignored it as maybe “taking on too much stress from work”.

My dad was a retired nursing assistant and we would always run to him for advice whenever we were not feeling well, and he would tell us what to do. As soon as I told him about this awful headache I was having, he told me to see the doctor. After visiting the doctors, they said to take some pain killers and come back if the headache did not go away.

Once again I waited a few days and the headache just got worse, this time my dad said to ask the doctor for a scan and which we did, the scan was scheduled for a weeks’ time.

But before I got to that week, one night I knew I was not well at all. But I fed my daughter before putting her to bed and made sure the house was nice and tidy (I was a bit of a clean freak as some would say). Then I went to bed…

And woke up in ICU having been in a COMA, I was told that when I went to bed at night, I woke up hysterical and was crying and didn’t want to go to hospital. My husband rang our friends who lived nearby, and they came and picked us up to take me to hospital. On the way I had a seizure and that was it, my condition deteriorated, I had multiple organ failure and was put on life support.

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The medical staff in Dubai were great and so were the doctors (I’m told) but no one knew what was going on with me as it was something they had never seen. Whilst in the ICU, I was being fed with a tube in my stomach and breathing through a machine. My husband spoke to my Neurologists, and in time managed to get hold of Dr Lunn from University College London Hospital. My husband and the doctors described my symptoms, and together Dr Lunn confirmed that I had Anti-NMDAR Encephalitis.

Dr Lunn then collaborated with the doctors in Dubai on treatments. But things got worse and my condition deteriorated again. They discovered I had a teratoma in my ovaries and that was the cause of the Encephalitis. There was no option, my ovaries had to be removed in order to save my life, and my husband had to make that final decision for the doctors. I was in a coma during this stage so still oblivious to what’s happening outside my very dark world.

Whilst I was hospitalised, my parents and all my family were constantly being updated on my condition as they were all worried. My dad and mum were especially worried as they were so far away.

My mum decided she would come, and my dad would come a couple of days later with his sisters (as he could not travel alone because he was quite poorly himself).

They, amongst other members of my family, came to see and support us and my parents.

My husband and Dr Lunn decided that the only place I could be treated was either the US or the UK, and as the UK was my home country, the decision was for me to get treated in the UK.

So my dad, mum and family had to go back to the UK. My dad had to get all the paperwork to arrange for my arrival and provide proof that I have lived and worked in the UK (in order for me to get treated here).

My husband really was a great strength and support, and has full faith in god and let god guide him in everything he did. He was currently working for a Medevac company based in Dubai. And for us his company were the best, they helped getting my repatriation arranged and made possible everything that seemed impossible.

 prithima 3 375x500 - Prithima's Story

Whilst I was being prepared for my repatriation, my husband had to sell up everything that we had in Dubai (our apartment, our cars, and all our household items). He managed to get a transfer with his work and get a job in the UK, although the job in the UK was 2 hours from Hastings and 1 hour from UCLH, the hospital I was being transferred to.

I finally arrived in the UK and was admitted at the University College Hospital, London. I was cared for by Dr Lunn and their great Neurology and Neurosurgery department.

Whilst at UCLH, Dr Lunn had a great team looking after me during my very long stay. For 10 months I was in a coma and had no clue what was happening on the outside world, I didn’t know who was coming to see me, what they were saying and what they were doing. I was just in a very dark place.

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Finally in late June/July (after my birthday I left the ICU) and was moved to the special ward, but my memory and recollection were still very bad. I have pictures and a diary of family and friends coming to visit me, and taking me out, and talking to me – but to date I have no memory of that, even though they say I was responsive, but as much as I rack my brain to remember, it is just a big blank space in my brain. It’s a big part of a puzzle that I can never seem to fit anywhere, and remains blank and missing.

Even though my dad was poorly himself, he still made the journey from Hastings to London to see me and talk to the doctors to understand what was going on. He got my mum into the pattern of coming to visit me whilst the doctors were doing their rounds, and would call her when she went by herself.prithima 5 500x376 - Prithima's Story

This is one of the last pictures I have of me and my dad together. Unfortunately, my dad’s health deteriorated whilst I was in hospital and he passed away August 2017, peacefully with my mum and family by his side.

The doctors told my husband and family not to tell me about my dad in case it affected my recovery, as I was still very fragile. I was unaware my dad had passed away, and would ask my mum why my dad had not come to visit me. I would ring her at home and ask where dad was, but I was always told he was tired and sleeping. Mum kept saying “dad loves you lots and is missing you and wants you to get better soon”.

So I worked with the nurses, the staff, the physios and my Occupational Therapist Jane Richmond, who made me build my strength and helped me walk, talk, and write again. I had to learn to stand and be independent and be strong, because I was so weak from being bed bound for so long. Once I started getting my memory back I felt that I need to be strong for my daughter and I need to be strong to show my dad what a brave girl I am. I knew he would be super proud and was doing everything so I could show him my achievements.

Soon with the help of the amazing doctors, Occupational Therapist, nurses and amazing team, I started improving and was allowed to go outside with the nurses and my family.

prithima 6 500x375 - Prithima's Story

I kept getting stronger and thinking about how I wanted to be back to normal and strong again for myself and everyone. Soon I was able to eat by myself.

Slowly I got better, and my medications were reduced but there was still a lot from what I can remember, maybe around 30 tablets a day. One of the many medications I was on was steroids. This made me put on a lot of weight, which I’m still struggling to lose; this weight gain affects your confidence big time in every way possible.

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My husband and my mum asked the doctors if I could come home to spend Christmas there, and they agreed. Before this they decided that they needed to tell me that my dad had passed away.

So my mum, my husband and other close members of my family came and took me aside, and slowly explained that dad had passed away. And I think I shed a tear but nothing really sunk in, and I didn’t really understand what they were saying. So I just agreed and said that I understood and carried on with the day.

After that I went home for Christmas, and my brother and his partner prepared Christmas dinner like my dad would have done but still nothing felt right. Everyone said I’m doing very well and I will get back to normal soon. But still nothing made sense, I was back to this puzzle in my head where there were missing pieces.

Another hurdle I had to tackle was my daughter, we were very close before I was ill but when I returned home, she was very distant and was scared of coming close to me. She would let me change her or be close to her and that absolutely broke me to pieces. I couldn’t believe it and felt like my daughter didn’t love me anymore.

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Whilst in hospital, my mum had been mainly looking after my daughter because my husband was working far away. My brother and his partner helped her a lot with my daughter, my brother’s partner took my little girl under her arms and treated her like her own girls, and I will never be thankful enough. My brother was a great support to me when I came out of hospital and whilst I was there for my daughter.

My mum had been shuffling between the hospital and the nursery to pick up and drop my daughter in between hospital runs, and everyone at the hospital couldn’t believe how she managed to do so much, and be so strong after what she had being through.

My mum and my brother explained to me that they had made a memorial bench for my dad at the hospice where he passed away, and took me there when I was home so I could understand what had happened and start accepting it.

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My brother also waited for me to return from hospital so we could put my dad’s ashes to rest. My dad always loved the sea, so we decided to release his ashes in the sea. But doing all this and knowing everything, I still couldn’t understand that my dad had passed away.

All I kept asking is “WHY, why did he go?” And “why didn’t he come and see me? Why he didn’t wait for me to get better?” And I still to date blame myself that I couldn’t get better fast enough for him to see me, I just needed a couple of days, all I wanted is his warming loving comforting smile, telling me it’s ok, everything’s alright. I want to tell him so much and see him so much, I get very emotional whenever I sit and think. He is the one person in my life that I would have definitely like to have by my side at this time.

But this is something I’m taking my time in accepting.

When I was told about my dad, this was also the time the doctors explained about my ovaries and that I would not be able to have any children because my ovaries had been removed.

I never expected this with the encephalitis, and was totally shocked and just looked at my husband and didn’t have anything to say. I was born in Mauritius and my grandma had 8 children. Me and my cousins all grew up together, my mum and dad love children, and I love children too.

I used to tell my mum, dad and my aunties that I will have 8 children too: 4 boys and 4 girls. That was my wish, I knew it would not really happen but that’s what I always said.

When I got married I was ready for children, I wanted to have lots to give to my parents because they were already great grandparents to my niece. And they always spoilt kids, and would adorn all children in the family with so much love.

So this were my many shocks, hitting me where it hurts.

I didn’t know how to accept this news and I still don’t. I feel that I’ve let myself down, I don’t feel like a woman anymore, as wrong as it sounds, that’s how I feel. And I look at my daughter and see how much she loves playing with her little cousins, and I feel that because of me she can’t have a little brother or sister.

Every time I look at families growing, and little babies popping up everywhere, it just pulls at my heart. I miss to be a mum again and grow a bump, have a baby grow inside you for 9 months, and once the baby is born, all the joy, tears and love and laughter that comes with it.

Right now I’m starting to accept those big factors that I have lost in my life. But thank fully I have an extremely strong, supporting and loving mum by my side, alongside my best friend, my husband, my soulmate. I have very close members of my family who may be far away but are so close to me and are always there when I need them.

Today I am a stronger person, I have learnt that life can be taken from you and that you should appreciate every moment you have. And I have chosen to do just that, focus on people who are important to me and focus on my future.

I am and will be on medication for a long time, but this is something I have to accept. The two things I have constantly going round in my head are memories of my dad and the sadness of not being a mother again.

But I promise myself that I will put all my love towards my daughter and overload her with so much love, not too much that she gets spoilt but enough for me to feel content.

I don’t know what the future holds but I can say I am a stronger and wiser person who won’t be easily taken advantage of, and will be more strongly independent than ever. 

I am thankful to all the family that were there to support my mum and my family during our difficult times, and we will never forget all that you did.

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

seal - Prithima's Story

 

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. 

Trivia Playing cards 3 FB 500x419 - Prithima's Story

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.  

AE Warrior Store 300x200 - Prithima's Story 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

The Dynamic Brain in Autoimmune Encephalitis

The Dynamic Brain in Autoimmune Encephalitis

September 26, 2020 | Claudia Lopez-Lloreda, PennNeuroKnow

The plastic brain

Brain plasticity handout image Facebook Post 300x251 - The Dynamic Brain in Autoimmune EncephalitisIn autoimmune encephalitis (AE), the body generates antibodies that mistakenly attack neuronal proteins that are important for brain function. Among the most important proteins targeted in AE are neurotransmitter receptors1. Neurotransmitter receptors function as the “lock” for different neurotransmitters, like dopamine and serotonin, that act as “keys”. Neurotransmitters unlock these receptors and through this allows neurons to communicate with each other.

One defining feature of the nervous system that neurotransmitters play a key role in is brain plasticity. Brain plasticity, also called neuroplasticity, is the ability of the brain to adapt by changing, re-wiring, or making new connections between neurons. This is important because this plasticity in response to lived experiences is what enables behavioral changes, such as learning new things and forming new memories2. Research and anecdotal evidence show that learning and memory are affected in AE, which makes it important to understand what brain plasticity is and how it is affected in disease.

Brain plasticity: How does it work?

At the cellular level, plasticity is seen mainly by the change in strength of the connections between neurons, called synapses. This is known as synaptic plasticity and it can go two ways: synapses can strengthen, known as long-term potentiation (LTP), or they can weaken, known as long-term depression (LTD)2. Importantly, the quantity and function of neurotransmitters and their corresponding receptors are critical for synaptic plasticity. More neurotransmitter molecules and more receptors means that neurons can communicate better and more effectively, which allows for the strengthening of their connection.

Strengthening usually happens when two neurons synchronize their activity. One famous researcher, Donald Hebb, said it conclusively: “Neurons that fire together, wire together.” This usually happens in our brain in response to different experiences, but it can also be studied in the lab. This process is studied by artificially stimulating connections to induce either LTP or LTD2. Using a baseline, scientists then study how different interventions affect whether the connection strengthens or weakens. By doing this, they can see how different changes, such as a generation of autoantibodies, can change these connections.

Can autoantibodies affect plasticity?

Since we know that AE is characterized by autoantibodies against important neuronal proteins—specifically neurotransmitter receptors—scientists wondered whether these autoantibodies could affect synaptic plasticity. One study looked at this by treating mice with antibodies against one specific subunit of the AMPA receptor derived from AE patients3. The AMPA receptor is one of the locks for the neurotransmitter glutamate, which is important in excitatory transmission, the type of communication where neurons activate other neurons. The researchers found that treating mice with autoantibodies led to internalization of the receptor, meaning the cells took the receptor away from its normal location on the outside of the neuron. Inside the neuron, the receptor could no longer exert its function and the neurotransmitter lost its effect.

The mice treated with these human antibodies against AMPA receptors had impaired LTP in a specific pathway of the hippocampus, an area that is critical for the formation of memories3. This means that with autoantibody treatment from AE patients, the strengthening of the synapses did not occur as well as it did when mice were not treated with the antibodies. As a consequence, treating mice with these antibodies affected their learning and memory. The researchers saw that the impairments that mice developed with antibody treatment paralleled the strong memory impairments seen in disease.

Similarly, a group of researchers treated brain slices from mice with fluid derived from the brains of patients with AE4. This fluid had autoantibodies specifically against an important neurotransmitter receptor called the NMDA receptor (NMDAR), another lock for the same neurotransmitter glutamate. Once again, the antibody-rich fluid derived from AE patients impaired LTP4. Injecting fluid from patients with NMDAR encephalitis straight into the brains of live mice also blunted the ability of connections to strengthen5.

However, these studies were done in animals. In humans, studying brain plasticity is a bit trickier, since neurons are deep inside the human brain in humans and artificially activating them is not an easy task. One way it can be done is by pairing two activations. The first activation, called peripheral electrical stimulation, is done by giving a jolt of electrical pulses to peripheral nerves such as those in the hand. At the same time, the researchers non-invasively stimulate the area in the brain that connects with the peripheral nerve by using a technique called transcranial magnetic stimulation. By doing this, they can “look” at what is happening in the brain to see how this artificial paired activation leads to changes in synaptic plasticity.

Studies show that this type of stimulation in humans produces something similar to the plasticity seen in mice and in tissue slices6. One study applied transcranial magnetic stimulation to patients with NMDA encephalitis and found that plasticity was impaired when compared to healthy individuals6. Strikingly, the degree of impairment in synaptic plasticity was associated with disease severity. These studies suggest that the autoantibodies generated in AE can be detrimental to the important function of synaptic plasticity in the brain. Further, impairments in synaptic plasticity could be a contributing factor to the symptoms seen with disease.

What does this mean for recovery?

Brain plasticity is also a mechanism that the brain uses to recover from damage. After injury, the brain can try to find new ways to do things. For example, if an area that controls understanding speech is damaged, the brain can reorganize to change where it gets different speech information from. In this case, the rearrangement of synapses and the alteration of synapse strength could be a way the brain tries to respond to the injury mediated by autoantibodies in AE. As a treatment, activating plasticity has been considered for psychiatric disorders7. Different strategies include medication8 and even exercise, which has been shown to enhance plasticity9. Therefore, it is possible that plasticity could be activated to help patients with AE. However, more research has to be done to further understand how exactly these interventions could change brain plasticity in AE and potentially help people recover from the debilitating symptoms.

References

  1. Lancaster, E. (2016). The Diagnosis and Treatment of Autoimmune Encephalitis. Journal of Clinical Neurology, 12(1), 1. https://doi.org/10.3988/jcn.2016.12.1.1
  2. Amtul, Z., & Atta-Ur-Rahman. (2015). Neural plasticity and memory: molecular mechanism. Reviews in the Neurosciences, 26(3). https://doi.org/10.1515/revneuro-2014-0075
  3. Haselmann, H., Mannara, F., Werner, C., Planagumà, J., Miguez-Cabello, F., Schmidl, L., … Geis, C. (2018). Human Autoantibodies against the AMPA Receptor Subunit GluA2 Induce Receptor Reorganization and Memory Dysfunction. Neuron, 100(1). https://doi.org/10.1016/j.neuron.2018.07.048.
  4. Zhang, Q., Tanaka, K., Sun, P., Nakata, M., Yamamoto, R., Sakimura, K., … Kato, N. (2012). Suppression of synaptic plasticity by cerebrospinal fluid from anti-NMDA receptor encephalitis patients. Neurobiology of Disease, 45(1), 610–615. https://doi.org/10.1016/j.nbd.2011.09.019
  5. Würdemann, T., Kersten, M., Tokay, T., Guli, X., Kober, M., Rohde, M., … Kirschstein, T. (2016). Stereotactic injection of cerebrospinal fluid from anti-NMDA receptor encephalitis into rat dentate gyrus impairs NMDA receptor function. Brain Research, 1633, 10–18. https://doi.org/10.1016/j.brainres.2015.12.027
  6. Volz, M. S., Finke, C., Harms, L., Jurek, B., Paul, F., Flöel, A., & Prüss, H. (2016). Altered paired associative stimulation-induced plasticity in NMDAR encephalitis. Annals of Clinical and Translational Neurology, 3(2), 101–113.https://doi.org/10.1002/acn3.277
  7. Uscinska, M., Mattiot, A. P., & Bellino, S. (2019). Treatment-Induced Brain Plasticity in Psychiatric Disorders. Behavioral Neuroscience. https://doi.org/10.5772/intechopen.85448
  8. Nitsche, M. A., Müller-Dahlhaus, F., Paulus, W., & Ziemann, U. (2012). The pharmacology of neuroplasticity induced by non-invasive brain stimulation: building models for the clinical use of CNS active drugs. The Journal of Physiology, 590(19), 4641–4662. https://doi.org/10.1113/jphysiol.2012.232975
  9. Erickson, K. I., Miller, D. L., Weinstein, A. M., Akl, S. L., & Banducci, S. (2012). Physical activity and brain plasticity in late adulthood: a conceptual and comprehensive review. Ageing Research, 3(1), 6. https://doi.org/10.4081/ar.2012.e6

 

 

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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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Life Lessons from Eating an Acquired Mussel

Life Lessons from Eating an Acquired Mussel

September 16, 2020 | By Dominic McDonald

At the mature age of 19, I decided I needed a sabbatical to escape the stress of my first year at University. It was to be a European adventure, sailing along the Mediterranean, exploring the coastline, meeting new people, understanding different cultures and eagerly tasting amazing food. I might even learn to sail, as I was to accompany a family from Sydney, tutor their children and help where I could on the boat, during a year of sailing. I never learnt how to sail, however I did ‘acquire’ some life lessons from a rather memorable Albanian mussel.

My story is rather unique in being young, sick and alone in a foreign country—presenting neurological symptoms with no diagnosis and a rapid exacerbation over a matter of days. On a journey of self-discovery, I lost myself and contact with my loved ones in just a 32-hour ferry ride from Venice to Greece. I was left with the belief that I would die in a strange and isolating hospital, which I later learned was Patras, located in rural Greece. The trauma of those first days and the subsequent four weeks in a hospital in Athens, were the start of my battle with autoimmune encephalitis. It’s a battle I continue eight years later, one that has significantly changed the course of my life. 

The treatment and diagnosis of such an unusual condition in Greece was quite an ordeal, where specialists assumed the worst, treating it as a likely ‘drug-induced’ psychosis, which significantly hindered both proper treatment and the ability to return home. It was by a miracle that a neurologist from North Shore, Dr. John Parratt, was able to make contact and provide a possible diagnosis over the phone, allowing medical evacuation to Sydney (the first and hopefully not the last time I fly business), where I was treated for autoimmune encephalitis at Royal North Shore. I later discovered I had been admitted in Patras, presenting in a highly distressed state, as the illness quickly took hold and I dramatically lost consciousness. Without Dr. Parratt’s intervention, I probably wouldn’t have survived. I am so incredibly grateful he got me home and continues to manage my fluctuating condition. I have learnt the critical need for understanding distressed patients with neurological symptoms and the importance of early diagnosis and treatment of neurological conditions.

My diagnosis with a rare form of autoimmune encephalitis in extreme circumstances and the prolonged nature of my acquired brain injury—that includes seven separate acute episodes of encephalitis since 2012—have taught me that being a medical anomaly can pose difficulties. More importantly, for better or worse a brain injury changes your conscious state, and therefore shifts your perspective and understanding of the world. I try to see it as life with a new lens. These are my three life lessons, ones that I now use as a framework for life with an acquired brain injury.

Discover your ‘anchor point’ and lock it in your mind.

relapse neurology wardSince my first acute episode in 2012, it has been so important to have a clearly defined timeline with an endpoint, during each relapse. An anchor point set to bring back the mind whenever it drifts too far. Settling an overstimulated mind is challenging, and settling an overstimulated mind with a severe neurological inflammation brought on by encephalitis can be nearly impossible. An anchor point establishes clear parameters for the brain and mind. It is a point of clarity and certainty when the world seems completely foreign and you are full of confusion, stress and unknowns. During each episode, my anchor point may shift, depending on context and circumstances, giving me a point of reference when I haven’t slept for weeks and have lost consciousness. It helps to focus, settle the brain and emphasise a more present mind. Importantly, I never drift all the way back to the hospital ward of Patras in 2012, but I remain present with a known anchor.

A clear event for me is April 2019, my most recent acute episode. Unfortunately, it was my fourth acute episode in less than two years, an incredibly traumatic period, easily the worst period of my life. A period I didn’t think I could survive (as I would drift away at times) I kept returning to my anchor point as the one certainty in my life at the time. It can be enough to settle the panic, give myself security and help motivate me. It has been over a year since my last acute episode, and if I were to get sick again I would fix again to my anchor point, just as I did after my last episode.

Smile.

It is difficult to know when you are through the worst of a brain injury, or experienced its lowest point. The prolonged severity of any brain injury confuses the journey of recovery. A smile is the best starting point, even when you feel you have nothing to smile about, because it has the power to generate positive energy and a presence of mind that seems too difficult. The transition from patient to survivor for any brain injury is arduous, unstable and incredibly isolating, but a smile can empower an individual through this transient period and help share the burden. A smile in the face adversity gives you a resilience to the fight, and presence of mind that can find enjoyment through the trauma. Not necessarily enjoying your life or life circumstances, but finding enjoyment in any small interaction.

Learn to Sail.

Dominic McDonaldI set out on a journey, with the goal ‘learn to sail,’ and be part of a crew in an Atlantic crossing. Instead, I have learnt to sail the fluctuations of a brain injury, crossing a new ocean with a new crew of specialists, family and friends. Along the way I have discovered new emotions, new moods, incredible highs built on the waves of hope and the unbearable lows in the face of another acute ‘storm.’

The extreme waves of emotions and fatigue add such volatility to everyday life, that even planning a routine is incredibly difficult. I have been propelled into an ocean of complete unknowns, with more volatile waters and severe weather, and after so many years of navigating these fluctuations, my journey became more and more isolating. I felt I was alone with no direction, and no way to navigate myself out of the storm. I find the enduring isolation years after the initial event to be the most traumatic impact of a brain injury, because eventually your support crew continues with their own lives and you are left alone, unequipped to navigate yourself. 

I had my first relapse in 2015, three years after my first episode, since then I have experienced more frequent and severe episodes, with four episodes between December 2017 and April 2019. Each acute episode can be weeks in hospital with complete loss of consciousness and memory gaps. My condition had become so unstable with no time for recovery between the waves of each episode, that I had completely forgotten how to sail the fluctuations of my condition. I felt hostage to my illness, its unknowns, uncertainties and instabilities and, after a number of horrific years I forgot my anchor point, I couldn’t smile and found it incredibly difficult to find purpose in my life outside of my illness. I had lost the ability to sail through the fluctuations, bunker down knowing conditions would settle, and there would be days ahead for easy sailing. 

Just when I had nearly lost hope, I had a new friend come aboard: Captain, a two-year-old black Labrador Retriever, who has had guide dog training and is a qualified therapy dog. Captain has been the friend and the help I didn’t know I needed! I was determined to find a way through this, but couldn’t continue alone. Captain has been an amazing crew mate, always eager for walks and swims, and through his eagerness, I am beginning to find more of a routine and purpose. He has been instrumental in changing the tides.

It hasn’t been all smooth sailing, I still get overwhelmed by everyday life, but together we have more good days than ever before. Our relationship gives a sense that finally momentum is shifting and we are doing all we can to capture this change and enjoy the periods of easy sailing. From my experience, brain injuries create an immense separation at a number of levels: all you can do is try your best to navigate each wave, each storm, enjoy the good days and remember one small change can break that separation.

There is still a gap between what I can do and what I want to do. Living my life with the knowledge of these three lessons makes everyday life more enjoyable and gives me hope that one day this gap will begin to fade.

In summary, it can be incredibly difficult to quantify the initial damage and consequences of any brain injury from minor to severe. To then quantify its impacts years after the initial episode are nearly impossible. All I know is, no matter the severity of the injury there is a monumental shift in the person’s life, such a dramatic shift that creates a seemingly insurmountable gap to life before and life after.

I now know more about my brain, its function and its limitations, I know this brain is capable, I just need more people to take the time to understand, And then remember I cannot be held to the standard of a healthy brain despite appearances. I hope that all survivors of acquired brain injuries have the opportunity to live the life they intended, not defined by compromise, and the capacity to support the reablement of those who are unable to do so.

 

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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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This is Seronegative Autoimmune Encephalitis, 1 Year Later

This is Seronegative Autoimmune Encephalitis, 1 Year Later

September 12, 2020 | By WhereAreMyPillows.com for the International Autoimmune Encephalitis Society

A few weeks ago, I celebrated the 1 year anniversary of my discharge from hospital.

There’s been tons of ups, as well as some downs in the past year—but ultimately, I write this to provide a message of hope to those that are having a hard time with autoimmune encephalitis (AE) right now. 

My journey began in 2014, when I suffered a flu-like illness after which I was never quite the same. For 5 years I lived with a mystery illness that was slow to settle in and occasionally remitted, but progressively robbed me of my key cognitive abilities. I dropped out of university (twice) and suffered countless periods where I felt like the living dead. 

The future became increasingly bleak, as I lost trust in my basic ability to think—let alone the capacity to ever make a living for myself.

Then summer 2019 came.

Through the haze, there’s one memory that sticks out: laying in a hospital bed for the first time, and looking over at my mom. I told her I thought this hospital stay was my last hope of ever getting better. 

Imagine the heartbreak she must have felt in that moment.

To her credit, she channeled my ominous words into sharpening her advocacy efforts. While my mind was adrift in a catatonic stupor, she fielded questions from a bevy of unhelpful specialists who looked at her with scrutiny and disdain. Being the determined woman that she is, she held her ground and didn’t let anyone push her around. 

My mom tells me at least 4 neurologists came by—and all were absolute crap. They either thought I was fine, or that I was a crazy malingerer. But thanks to her insistence that something was medically wrong, a specific psychiatrist was sought out as a consultant to my case.

I consider that one psychiatrist my angel: she fought for the PET scan crucial to my diagnosis, as well as the Rituximab a medical committee tried to bar me from accessing. I’m fortunate that my mom and psychiatrist never gave up on me, even after my inadequate response to the steroids and IVIG initially administered. At one point I felt like my life was over, but lo and behold: 7 weeks after my first Rituximab infusion, I started experiencing significant gains. By week 10, I had gotten about ~95% back to baseline. The end of 2019 and early 2020 are some of the best months I’ve ever experienced. 

I wish the story ended here, but the fact of the matter is that some challenges remain. I’m back on the mend via Rituximab again, after experiencing a relapse this spring. You can read more details about what’s happened since then at www.wherearemypillows.com.

Despite the setback, I’ve improved considerably from my worst points last summer, and consider myself lucky to have parts of my brain back I thought I had permanently lost. Though my recovery has stretched on longer than anticipated, the important thing is that it progresses upwards nonetheless.

In the meantime, I’m grateful to have a community of fellow AE warriors to fall back on. I want to shout a huge THANK YOU to the International Autoimmune Encephalitis Society and their lively Facebook group, which has provided me with endless emotional support and a pool of knowledge with which to fight my personal AE battle. It’s humbling to be in a position now to pay it forward and help others touched by AE—and to further this personal mission, I’m delighted to announce that I’ll be sharing my experiences in a new #WhereAreMyPillows monthly column. These will be published right here on the IAES blog!

While none of us want to be running this marathon, I hope that the burden of AE is a bit lighter knowing that you’re not alone. I got back on my feet after 5 years of misdiagnosis— a reality that seemed a mere pipedream just a year ago. Don’t give up and don’t lose hope!

 

wherearemypillows bio

WhereAreMyPillows is a seronegative AE survivor from Canada. Her favourite activities include writing on her health blog, taking photos, doing yoga, and finding her next spot to take a nap. 

Join her on the IAES Facebook group, and on her WhereAreMyPillows Facebook PageInstagram, and Twitter pages #wherearemypillows

 

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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From College Soccer Player to Survivor of Autoimmune Encephalitis

From College Soccer Player to Survivor of Autoimmune Encephalitis

September 2, 2020 | By Matt Martin

Article first appeared on the UC Health Media Room

Laura Martin is a 20-year-old college student from Winchester, Kentucky, right outside of Lexington. She was a Kentucky Governor’s Scholar and student at Transylvania University, as well as a standout goalie for the university’s women’s soccer program.

In August 2019, Laura’s future was on the rise. But in a matter of a few days, she and her family were soon facing their lowest moment. Her health suddenly declined. And no one knew if this promising student and gifted athlete would make it past 20 years old.

As she was getting ready for her sophomore year and second season with the women’s soccer team, Laura started behaving differently. Her friends began to notice she wasn’t herself. They told her family, who also noticed a drastic change in Laura’s behavior.

Laura wasn’t sleeping and started having intense paranoid delusions, acting in a way that was completely unrecognizable to her friends and family.

“I didn’t even know who this girl was,” Keri Martin, Laura’s mother, said.

Laura’s condition continued to decline. On Aug. 28, 2019, her family decided to take her to the Emergency Department at a Lexington hospital close to where they are from. When the family arrived, they were told that Laura was suffering from mental illness. Doctors took Laura into the behavioral health unit to be placed on a 72-hour hold.

With no family history of mental illness, Keri requested neurological testing for her daughter. But Laura’s doctors were dismissive of her request, and released her from the hospital after seven days without any solution to her symptoms.

“I thought this was how life was going to be for me now,” Laura said. “Coming back from the hospital was hard. Not being in school and missing my friends was difficult.”

Although Laura seemed better when she returned home, she immediately reverted back to behaviors that frightened her family. After having a poor experience at another healthcare system, Keri and James, Laura’s father, didn’t know what to do. They had many sleepless nights as they tried to take care of their daughter. With help from other family members, they watched Laura around the clock as she got worse day by day.

Laura wasn’t able to sleep and couldn’t walk, write or remember who her family members were. She was losing her cognitive ability at an alarming rate and she could no longer take care of herself for basic tasks.

“As a family, we were broken and at the bottom. There was nothing that could be worse than this,” Keri said.

Keri fought to get Laura in to see a neurologist in Lexington, only to be once again rejected by another physician. The family was told that Laura should be sent to a behavioral health unit. Keri felt that if they sent Laura back to a psychiatric facility, she would die there.

“We didn’t know what to do or where to go,” Keri said.

Running out of time and answers, Laura’s parents decided to bring her to Cincinnati to UC Health, home to the region’s No. 1 preferred provider for neuroscience care.

Immediately upon arrival at University of Cincinnati Medical Center on Oct. 9, 2019, the Martin family knew this experience would be different. Clinicians compassionately spoke to the family and quickly arranged for Laura to have a private room in the neurological unit.

Laura’s treatment when she arrived at UC Medical Center was led by Jordan Bonomo, MD, UC Health neurologist, associate professor in the Department of Emergency Medicine and director for Neurocritical Care Fellowship at the UC College of Medicine.

An experienced group of residents and nurses made Laura’s family feel at ease, leaving them with a glimmer of hope for the first time in months. One resident involved with Laura’s care even told her family that she would advocate for her.

Another resident, Laura DiDomenico, MD, remained in the unit with Laura even after her rotation ended so she could see her treatment through. Laura’s entire care team was united and committed to finding out what was wrong and how to save her life.

“It was an entirely different experience from the moment we walked through the doors of the Emergency Department,” Keri said.

Laura’s Recovery after having “Brain on Fire”

Laura had an EEG that revealed she was suffering from many small seizures, leading to her unusual behavior. The seizures were part of a neurological disease called Autoimmune Encephalitis, which refers to a group of conditions that occur when the body’s immune system mistakenly attacks healthy brain cells, leading to inflammation of the brain. This condition is often referred to as “brain on fire.”

Her family suspected this was the reason for Laura’s rapid health decline, but it wasn’t until they came to UC Health when this was confirmed. No other healthcare system in Lexington would even consider offering Laura neurological testing.

Over the next 12 days at UC Medical Center, Laura’s care team worked tirelessly to find a way to improve her condition. Joseph Broderick, MD, director of the UC Gardner Neuroscience Institute and professor in the Department of Neurology and Rehabilitation Medicine at the UC College of Medicine, took over Laura’s care on her third day in the hospital.

“Inflammatory disorders of the brain can be devastating and challenging to diagnose,” Dr. Broderick said. “But patients can also respond dramatically to the correct treatment.”

In order to improve her condition, Laura started Intravenous Immunoglobin (IVIG) treatment, which is used to treat various autoimmune diseases. The first couple days were difficult for Laura and her family, but as time wore on, her condition gradually improved.

By Oct. 21, 2019, Laura had completed her IVIG treatment and was well enough to return home. Laura’s treatment included IV steroids, and to this day, she continues using oral steroids. Both of these have contributed to her improved condition.

After discharge, she continued to improve further and subsequently went back to work while waiting to restart college. “Laura is a walking miracle,” Keri said.

“It’s gratifying to see such a positive response from Laura. We are very proud of our treatment team who made the diagnosis and started her on the appropriate therapy,” Dr. Broderick said.

Post-hospital treatment, Laura is seen by Aram Zabeti, MD, director of the Waddell Center for Multiple Sclerosis at the UC Gardner Neuroscience Institute and associate professor in the Department of Neurology and Rehabilitation Medicine at the UC College of Medicine.

“As the region’s academic healthcare system, we are proud of our ability to diagnose and treat rare diseases such as Autoimmune Encephalitis,” Dr. Zabeti said. “Early intervention in Laura’s devastating disease saved her education, productivity, family and even her life.”

Handling the COVID-19 Pandemic

When the COVID-19 global pandemic began, Laura’s family made sure to keep a close eye on her to protect her from possible infection due to her compromised immune system. Laura continued her post-hospital steroid therapy during the pandemic. Unfortunately, she wasn’t able to continue her part-time job she recently started, as the store she worked at temporarily closed to prevent the spread of COVID-19.

With the help of Dr. Zabeti, Laura successfully completed her steroid therapy and is no longer considered immunocompromised. She will be able to return to her part-time job when the store reopens.

Going from a healthy, successful college student-athlete to a neurological patient was something Laura could never have expected. She and her family went through adversity, frustration and fear along the way. But now, Laura is able to return to her life she had to give up prior to her diagnosis.

She’s able to sleep, walk, drive and work. Her next goal is to return to college in August 2020 and complete her bachelor’s degree in English with a minor in Secondary Education.

“It’s amazing to know that I have a condition that I can live with, that’s also treatable,” Laura said.

After being written off by other healthcare systems, Laura and her family found hope at UC Health. They know where to go in the future if anything happens.

“Everyone went out of their way to help Laura and all of us,” Keri said. “UC Health gave us our daughter back.”

 

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. 

Trivia Playing cards 3 FB 500x419 - From College Soccer Player to Survivor of Autoimmune Encephalitis

 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.  

AE Warrior Store 300x200 - From College Soccer Player to Survivor of Autoimmune Encephalitis 

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

 

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My Daughter: An Everyday Miracle

My Daughter: An Everyday Miracle

August 19, 2020 |By Francis Lelis

117715534 699421850917199 1979343376584730548 n 225x300 - My Daughter: An Everyday MiracleShe was diagnosed with Anti-NMDA Receptor Encephalitis on November 5, 2019. She was 13 years old then, and turned 14 on March 15 this year.

Our healthy daughter was showing the exact opposite of herself. She was very healthy and athletic. She has a blackbelt in Taekwondo and was bagging gold medals left and right in combat tournament.

All the standard symptom of encephalitis were there. It was very hard to understand and we were very shocked to digest the sudden alteration of our lives.

The early recovery period was the toughest. The IAES Facebook group witnessed how scared and frustrated we were as her parents. She didn’t sleep for 2-3 days. And when she did sleep it was only for 5-6 hour at a times. Often she had tantrums. Crying, shouting and there were times that she just snapped and hit anyone in our house.

117905343 334654980911833 5950238094492477714 n 225x300 - My Daughter: An Everyday MiracleToday, is June 1, 2020. Almost 3 weeks that she has been showing very good behaviors. She sleeps on time now and for a good 8-10 hours. Our house is filled with laughter again. She has become funny again. She loves playing with her dolls again. Art, music and movies are her pastimes. Unlike before when she could not sit for more than 5 minutes. She takes her medicine and milk by herself now. She can now take care of herself in the bathroom.

This illness is too much and no one deserves it. Many people helped us during the hard times. And we cannot thank them enough, especially those who prayed for us. Who helped us to understand her situation. And of course, the IAES Facebook group. It helped us know more and understand more. And I thank God for the everyday miracle.

 

 

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. 

Trivia Playing cards 3 FB 500x419 - My Daughter: An Everyday Miracle

 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.  

AE Warrior Store 300x200 - My Daughter: An Everyday Miracle 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

 

My Daughter’s Diagnosis—and Her Recovery

My Daughter’s Diagnosis—and Her Recovery

August 5, 2020 |By Kelly MacDonald Marrero

2 year old brynn 2 225x300 - My Daughter’s Diagnosis—and Her RecoveryAugust 4, 2019, was the day that changed our lives forever—one that we call the perfect storm. A few weeks prior to this day, my daughter Brynn had turned two, with a baby sister born a few months before.

We noticed some weird behavioral changes as I returned to work from my 12-week maternity leave. Brynn is my first child, so my thoughts were immediately, “Wow. Two-year-olds are tough.” I kept asking my coworkers and friends that had been through this, whether this was normal, and they assured me that it was simply the “Terrible Twos.” They promised me she would get used to my working again. They even commented, “Wait till she turns three… it gets even worse!”

Brynn had been a very mild-tempered, funny, happy-go-lucky child that I really never had any behavior issue with. Developmentally, she was ahead of schedule: speaking full sentences; knowing numbers and colors; and speaking and understanding a good amount of the Spanish language.

As a week went by, she started not sleeping through the night, tantrums started becoming inconsolable, and exhibition of impulsive behavior. Starting on a Monday she vomited and her appetite changed. My husband, observing very subtle movements like Brynn cocking her wrists outward. He took me aside on Wednesday and said, “It’s almost like she is autistic. Additionally, her behavior towards her cousins changed. I remember my sister and I laughing under our breaths because she was in a RAGE yelling and screaming at them! By Thursday, my mother-in-law reported to me that she was barely eating. She had even turned down a Popsicle in the bathtub which she looks forward to every night!

It is truly the hardest thing as a parent to decide when to call the doctor, you never want to miss anything, but at the same time, you don’t want to be one of those parents that take your kid in for every little thing. My husband and I decided that since I had the day off on Friday, It would be a good idea to just take her in to make sure everything was ok. Throughout all of this, she never spiked a fever!

By Friday morning, she was looking pretty rough. Little did I know, this was the last day I would hear her sweet little voice for seven weeks. At the pediatrician’s office, I explained what was going on. They did the full exam including looking in her mouth. As a dental hygienist, it’s normal for me to observe her mouth regularly, and I had seen nothing weird. Her nurse practitioner stopped and said, “Do you see this little white dot in her mouth? This is very common. Your child has Hand-Foot-Mouth disease.”

She further explained that this is why she wasn’t eating because it is very painful. She also stated to me that it would probably get worse before it got better, and this virus has to run its course. She instructed us to make sure she was drinking fluids and not to let her get dehydrated. On Saturday we laid low, gave her some Pedialyte and began syringe-feeding her liquids and had to bribe her to get a couple drips down. The next morning, I ran a quick errand and my husband stayed home with Brynn. As I was sitting in the parking lot, my husband FaceTimes me, saying, “She is unresponsive,” as he lightly moved her face from side to side, calling her name, all without her making eye contact.

I have never shoved groceries in my car so fast. I instructed my husband to get dressed and I will be home ASAP and we will be taking her somewhere! I immediately got on the phone with my best friend who happens to be the nurse practitioner at the local pediatric urgent care clinic. She said, “Come on in and we will check her out… she is probably just dehydrated. We will give her some fluids and see how she does.” When I got home, Brynn had perked up as if nothing was wrong and I questioned my thought process. We chose to proceed, thinking, “Better safe than sorry!”

We arrived at the clinic and the nurse practitioner agreed that she didn’t seem normal and started an IV immediately. Upon observation, the doctor noticed her eyes were rolling back in her head and noticed unusual movements. They called an ambulance right away due to the fact it looked like seizure activity. I was taken back by how fast everyone was moving and thinking, “OMG, is this really happening! What is going on? Our worse nightmare was coming true. Something is wrong and we have no idea!” We were rushed to the local hospital and there they did a MRI, spinal tap and drew some blood. Everything came back normal, except a herpes 6 virus (a/k/a, Roseola which every kid under the age of five comes in contact with and fights off) which was wonderful, except no one could explain what was going on. The doctor did state that it seemed neurological, but he couldn’t put his finger on it exactly.

From here started a seven-week journey to the world of a medical nightmare with Autoimmune Encephalitis. We only stayed at the first hospital for two nights, due to the lack of attention my daughter was getting. They initially placed her on EEG machines to watch her closely for seizures, which she had none! They treated her for the herpes with a high doses of Ganciclovir, saying it was to risky to do steroids. Getting a doctor to answer any questions or return to our room was a nightmare. There was no infectious disease doctor or rheumatologist, and getting a hold of a neurologist was a chore.

The second day I kept hearing meningitis/encephalitis, though no one said this to me directly, nor could explain anything. At this point, I had not had a meal or slept. I felt like no one was doing anything and I was up all night researching on Google different signs and symptoms. I got wind from one of the doctors that a transfer could be in place if I wanted, to which and I replied, “Yes, let’s get outta here!” This was the best decision I ever made.

The next day we were transferred to Arnold Palmer Children’s Hospital in Orlando where a plethora of doctors asked all the right questions. They ran about 100 different test to different labs, and I could tell they were really working toward a diagnosis. No one had a clue until a Rheumatologist who had previously worked for a doctor that had a lot of experience with patients with AE. She strongly suspected the NMDA Autoimmune Encephalitis but we realized for the test it takes over a week to confirm because it has to be sent to the Mayo Clinic.

They were actually very confident with this diagnosis that they started with very high dose of Solu-Medrol and IVIG for a couple of days. Brynn at this point was in bad shape. They attached ” No-No’s to her arms so she could not pull the feeding tube out. Her eyes were rolling back in her head, she couldn’t sit up, and had this movement disorder which is very common with AE. There were days she went without sleep and then days all she did was sleep! It was so scary to watch your child go through this as you helplessly sit on the sidelines, praying the doctors and nurses are doing what’s best for your child. Then, the diagnosis came back positive for NMDA Autoimmune Encephalitis, at which point the doctors decided to treat it aggressively with five rounds of plasmapheresis and two rounds of a chemotherapeutic drug called Rituxan. We spent three weeks in the ICU and another two weeks on a stable floor weaning her off the drugs, and beginning PT, OT, speech and music therapy. Brynn had reverted back to a baby: sticking things in her mouth; moaning to try and communicate; and crawling on the hospital floors. Around week five, she became a two-person job, changing diapers and keeping her from getting tangled around all the cords to which she was attached.

To make this whole experience even more challenging, Hurricane Dorian was headed to our hometown of Melbourne, and we had a three-month-old infant being passed around the family, driving freshly pumped milk back-and-forth. I fully believe the only way we made it through this terrible nightmare was the support we had from our friends and family. Truly, we would not have been able to do it without them. Kudos to the Ronald McDonald house that housed my family as they came to visit to stay long weekends so I got to see my infant.

Daily, we saw subtle changes. Brynn became stronger and actually started to walk before we changed hospitals. That was the best day ever seeing her up walking, though she was very unsteady. Little did we know, this now presented us with new challenges as she became more difficult to keep in a bed or hospital room.

2 year old brynn 225x300 - My Daughter’s Diagnosis—and Her RecoveryOur last stop was we being accepted into a rehab facility across town at another children’s hospital. Here she learned how to eat and bathe, and she started saying words again the very last night we were there! What a relief my kiddo was coming back to us!!! Doctors to this day can’t tell us where we will be in the long run or how long it will take her to fully recover, but we have high hopes with positivity and a heck of a support system that works with her everyday to be all she can be.

That concluded our seven weeks and we finally got to come home. I was a little nervous because we had so much help and proper tools to keep her safe at the hospital. We continued at home with occupational therapy and speech therapy until the end of the year. Brynn was back! Doctors would like to still remain on monthly IVIG treatments for one complete year and supplement with Rituxan as needed. All of them are amazed by how fast she snapped back from this disease. I can honestly say that it was because of a fast aggressive treatment, attentive doctors, and a strong support system full of love, patience and positivity that pulled this little girl back. Life is way better than we had projected at this point. The monthly IVIG treatment is rough as my daughter hates getting the IV. Hopefully we can look back at this and say, “Wow, that was just a bump in the road.” Until then, we will just keep our heads up and plug along!

 

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

 

seal - My Daughter’s Diagnosis—and Her Recovery

 

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

 

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    Elaine’s Unknown Fight

    Elaine’s Unknown Fight

    July-8-2020 | Danielle Davis

    elaine-smith

    There are moments where you are enjoying life and never think that anything could go wrong. In December of 2015 our family was hit with a crazy oddity that was nothing we could have ever dreamed.

    It was Christmas break and thankfully I took the time off to be home with all my kids while they were out of school. My oldest is Elaine, whom we all call Lainey. She had just started working her first job with me at the local call center. I took her for the first late-night shift she ever worked on December 28. The next morning was when hell began and didn’t stop until late April/early May of 2016.

    On December 29, Lainey woke up and wasn’t quite right. As a parent knowing how the young kids are, I started thinking maybe she was just tired or that maybe she tried drugs to be cool with the people she worked with the night before. When she got up, she was out of it. Throughout the day, she kept seeing things that her brothers and I didn’t, as well as making weird statements. I literally thought my daughter was a bit crazy.

    By the morning of December 30,, she was much worse. She didn’t know where she was or that she had to get to work. When I had her get up to go take a shower, I found her outside in the cold, without any shoes on, trying to get in my car to take her shower. Once I was able to get her inside, I had to shower her myself because she acted like she had no idea how to clean herself.

    By this point, I was so concerned that I called her work and told them she was sick. I then drove her to the ER in St Joseph, MO. Once there, they took her back to the area for people who may need to be admitted to a psychiatric ward. They had her strip down and put on a hospital gown. A guard sat outside her room and it took several hours before they confirmed anything. They took tests and ruled out drugs as well as alcohol. The doctors had no true reason as to why my beautiful angel was acting so crazy. The only answer they could give was that she had a UTI and when elderly people have these it can cause dementia for them. So, they prescribed some medsone of which I couldn’t even get for 24 hours after this visit—and said if she wasn’t better in two days to come back. It was like they knew I would have to come back.

    We went on about our days as usual as we could with a teenager that was deteriorating before our eyes: she barely slept; her paranoia worsened; and, late at night while home, she had a couple moments of aggression. When December 31 came around, she couldn’t dress herself, remember how to eat or drink, and barely remembered how to walk. Our family always got together on New Year’s Eve and everyone knew that something was wrong with my sweet girl. I made the decision then, that if by morning she hadn’t shown any signs of improvement, I was going back to the hospital and not leaving until they could help my daughter get back to herself.

    We arrived at the ER again in St Joseph, MO, and started a multitude of tests. None of them came back with any signs of what could be wrong. The doctors looked at me and said they had no idea what was wrong with my daughter. That was not good enough. I told the doctor that something is clearly wrong and to figure out where my daughter could be sent to get answers that wasn’t a psychiatric ward because I knew in my soul that she was not crazy. By 9 p.m. that night we were sent via ambulance to Children’s Mercy. I had no idea at that moment, that this was going to be the place that saved my daughter from an evil no one else would have ever recognized.

    Early in the morning on January 2, I met the men who were sure they knew how to help Lainey: Dr. Aalbers and Dr. Allison. They explained to me that they were sure from the symptoms that she was presenting with, that they wanted to test for this rare illness called Anti-NMDA Receptor Encephalitis. I had to agree to let them attempt a spinal tap for them to get the fluid that was needed. They also added a bunch of wires to her head in order to check brain waves. Once I spoke with them and agreed to all the testing, I of course did research on what they had discussed with me. After reading articles on the internet, I was convinced that these two extraordinary men had found the way to heal my baby and get her back to her normal self. We spent months at Children’s Mercy in Adele Hall. On January 11, we received the result from the CSF, stating that Lainey truly had Anti-NMDA Receptor Encephalitis. This is when we began all the treatments that would get this disease under control.

    Who knew that the antibodies in your own body could backfire making them attack the brain cells instead of the actual cells that were caused by an illness? Most of the medical documentation stated that women would need to be screened for teratomas as this would be the leading cause of what brought on the illness. Unfortunately, Lainey was negative for teratomas. We still have no real reason as to why she now has Anti-NMDA Receptor Encephalitis, except that someone higher than us knew that we could handle anything they put on our plates.

    At one point I was certain that the doctors had no idea what to do, so we had a medical conference and one of Lainey’s doctors that week reached out to Dr. Dalmau. This doctor received an email back from the man who first diagnosed this and was told that what was being done is exactly what he would do. So, we kept to that course moving forward from that point. It took another 75 days after this before we started to see Lainey “wake up.”

    They call it waking up because most patients have no memory of anything that happened to them while deep in this disease. That is true for my daughter. Her main memories of how she became sick and most of her hospital stay are from my stories to her. I have told her every detail she has asked for. To this day, she still will take me with her at times in order to help with information that she doesn’t remember well.

    We got close to so many doctors, nurses and care assistants. It was a long hard battle. Lainey worsened before getting better. We spent many days in heightened paranoia states. She had more than her share of aggressive moments, which eventually meant that for the safety of herself and others, the doctors had to start using restraints. I was super happy that stage didn’t last long. There were weeks of two steps forward with six backwards.

    Lainey experienced many different treatments. She took Rituxan twice. Had weekly treatments with Cytoxan. She was on melatonin, steroids, Ativan, Benadryl, Zofran, clonidine, IVIG, trazadone, and Cellcept. I am sure I forgot some of the meds that got her back on track to a state of remission, but the main ones are here. She made it through multiple MRIs, EEGs, spinal taps, PT, OT, speech therapy, and even having her eyes checked on from all the steroids she was on. We were released on May 4 to Lakemary in Paola, KS. She was at this facility for 23 days before being released back to my care. We had to be sure that she was not going to be harmful to herself or others before coming home for good.

    That summer she spent as much time with her brothers and her horse as possible. She had her 18th birthday and was excited when she was able to go back to school with an IEP. She fought hard to get back to herself and once that happened, she did everything she could to prove that she would beat the odds. She attended her senior prom, lots of dances, and was featured in St. Joseph Newspress for showing that she could graduate with her peers despite all odds.

    Since graduating from high school, she has completed all treatments for her illness and is currently in remission. We call it remission because at any point this horrible devil could come back and Lainey has the possibility of having a relapse. She worked full time and at one point held down more than one job. Lainey is back to her normal stubborn, hardheaded self. She gave birth to most handsome little boy on November 13.

    All of these things were items that doctors said may not ever happen for her. At one point we weren’t even sure if she would ever “wake up” from all of this. Still to this day, she doesn’t remember much of her hospital stay at Henson Hall. Lainey remembers a lot of her nurses and care assistants because they were some of the ones there as she was coming out of the so-called fog that this disease causes in the brain. We still give big shout-outs to all our people at CMH and are more than thankful to have found people who knew how to help us. She still has lots of issues with her memory, some of her muscle spasms are still there, and when she is sick, she knows I will still ask all the same questions that she had to answer when she was sick. I truly believe that once you experience something of this nature it builds sort of a post-traumatic syndrome in the people who are caregivers.

    I never stop worrying or looking for signs that she may be going into a relapse. I have a hard time when we don’t speak often and get worried more than I probably should. I do, however, say a prayer everyday thanking those above that she is here and healthy, living a normal life that I was told to prepare for her not to be able to have. I also say prayers for all the other warriors afflicted with this deadly illness.

    We give thanks to all her doctors who helped us through this at Children’s Mercy in Kansas City: Dr. Aalbers, Dr. Allison, Dr. Cooper, Dr. Tobler, Dr. Coffman, Dr. Cation, Dr. Becker, Dr. Lepichon, Dr. Hema, Dr. Korth, Dr. Hall, and I am sure there are some I can’t remember.

    CAs and Nurses: Lauren, Kelsi, Brian, Chrissie, Rita, Courtney, Julie, Kaitlin, Heidi, Steph, Rachel, Shannell, Alisa, Terri, Laura, Elizabeth, Codi, Lena, Skylar, and Ann. Just to name a few.

    Child life – Gretchen and Sandy. OT and PT. Speech: Gayle.

    Lakemary – Marcy, Mary, and Courtney. Plus, all the house staff and teachers.

     

     

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

     

    seal - Elaine's Unknown Fight

     

    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.

    Trivia Playing cards 3 FB 500x419 - Elaine's Unknown Fight

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

     

    why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

       

      I’m Looking Forward to Living the Rest of My Life after Autoimmune Encephalitis

      I’m Looking Forward to Living the Rest of My Life after Autoimmune Encephalitis

      June-10-2020 | Gary Walters

      December 2019

      Gary Walters 2 281x500 - I’m Looking Forward to Living the Rest of My Life after Autoimmune EncephalitisThe last two years of my life seem to have disappeared from my memory. Gone. Holidays, weddings, a funeral, birthday parties, Christmas and New Year. Friends and family keep telling me things I’ve done and the way I’ve behaved, some of which are very embarrassing to hear. It’s just not me.

      This is the result of the disease Autoimmune Encephalitis (AE), the symptoms of which I was clearly exhibiting without my even realizing. Hallucinations, involuntary movements (which developed to 20-30 movements over four or five minutes), insomnia, loss of inhibition, memory loss and finally seizures, none of which I can remember. Apparently, I had two massive seizures at work (a Secondary School where I teach Physical Education), one of which resulted in the police being called due to my resisting all help. I’m told this was the last of a number of smaller seizures as the disease continued to develop and take hold.

      The last seizure resulted in hospitalization for more than two months and being seen by a number of doctors and specialists who put me through a whole host of MRI scans, EEG’s, blood plasma analysis and other tests I don’t recall. I was eventually transferred to another hospital, where a specialist identified AE straight away, where I stayed and was treated for more than three weeks.

      Lots of my friends and family traveled to see me, none of which I can remember and feel very guilty about admitting to. I do have a memory of very small flashes of shouting inappropriate comments at some female staff and having to apologize the next day and some very small flashes of walking around on other wards in my underwear looking for my ward. Again, it’s very embarrassing and most of it I can’t fully remember.

      I’ve been told of other embarrassing events I performed, which eventually resulted in my being placed in a room by myself and given sedatives to help me “relax.” I was given all sorts of medicines, went through a whole host of tests and discussions with specialists on how to treat and control this very rare disease, and no one knew the right answer. It was a case of controlling the disease from worsening and monitoring my condition very closely.

       

      Gary Walters 3 300x300 - I’m Looking Forward to Living the Rest of My Life after Autoimmune EncephalitisEventually, I was transferred back to my local hospital and continued to have a wide range of tests, blood samples were taken every morning to be analyzed and, after three more weeks, I was released to go home with a cannular inserted into a vein in my wrist with 24 tablets to be taken during the morning and 12 at night. I also received IVIG treatment to boost my immune system every morning at the local hospital.

      I am now awaiting a decision from my consultant regarding the next steps. He has to speak with specialists in London as he is also unsure about what to do. I’ve been signed off work until after Christmas, which I also find frustrating as I feel back to 100%, but deep down I know that is the right decision.

       

      I hope this article gives other sufferers of this very rare disease assurance there are other people out there experiencing similar symptoms of this confusing and inexplicable disease for which hopefully leads to further research and ultimately a successful pathway to complete recovery.

       

      Gary Walters 1 300x300 - I’m Looking Forward to Living the Rest of My Life after Autoimmune Encephalitis

      May 2020

      Since I wrote the above piece back in late December 2019, I’m feeling back to 100%. The doctors, specialists, occupational health therapists are all very surprised how quickly I seem to have fully recovered, and it’s all down to the support and treatment I’ve had.

      It’s now early May, I’m still taking a large dose of meds including Lamotrigine, Levetiracetam, Prednisone, Adcal etc, which to be honest it’s now a case of a gulp of water and down the hatch. It’s now about 10 tablets in the morning and eight at night — massively down from 24 and 12.

       

      I went back to work in early January on a carefully monitored and phased return, building back to full-time before the dreaded COVID-19 hit. I’m not going to lie, going back to work has been tough. The school I work at has moved on, which has is expected in the 12-18 months I’ve been in and out (mostly out). Different students. Different staff. Different expectations. It’s been hard for me, but harder and more frustrating for the brilliant people I’m lucky enough to work with.

      When I got back into work I tried to pick up where I left off. It didn’t work, because my expectations of myself are so high. I wanted to know why, how, what had happened to this, that, and the other. I tried to rush back too quickly, and it didn’t work. I wasn’t listening or asking for help enough.

      I thought I could pick up where I left off, but I couldn’t. My brain needed time to click back into action. Those billions of neurons needed time. Time, I thought I didn’t have. Fortunately, my employers have been incredibly understanding. They’ve supported me so much, something for which I am eternally grateful.

      This is where I know I’m so lucky. I’ve read so many stories of people that are struck with different forms of encephalitis and other life-changing illnesses where they haven’t recovered enough to be able to return to work, or their employers haven’t been as understanding. At times, I feel guilty reading their stories.

      As I write this I now only see my specialist twice a year and my meds are being reduced every 10 days. I’m back into full-time work in my original role and physically fit again, running at least three times a week, with lots of sport and the gym. I seem to have a “small” gap in my memory of about 12-18 months, but it could have been a lot worse.

      So, it is very possible to make a completely successful and long-lasting recovery from AE and other forms of the disease. I read so many stories of people who have suffered from this terrible illness and are still suffering, so I wanted to write this to let people know there are success stories and you can — with the correct treatment and support network around you — return to full health and look forward to living the rest of your life.

       

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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

       

       

       

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      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.

       

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

       

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      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

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