Through my eyes: Watching my Dad’s AE journey

Through my eyes: Watching my Dad’s AE journey

November-13-2019 | Ryan J Dinero

It’s been a little over two years since I got the phone call from my Mom. I was a sophomore in college and was entirely unprepared for the conversation that was to follow. She explained that my dad had a minor seizure while at work and was being transported via ambulance to the hospital. This news came as a total surprise to me because my dad was in seemingly perfect health – no drinking, no smoking, and he exercised frequently. While I could tell that my mom was obviously shaken, in the moments after that phone call I was able to convince myself that everything was fine, that he would get a prescription and return home the same day unscathed. Like many others who have experienced the grueling battle against autoimmune encephalitis I couldn’t have been more wrong about what was to follow. So began my dad’s battle with the disease.

Its hard to explain to people who haven’t ever heard of AE that it’s not a simple disease to diagnose. In my dad’s case, it took two separate stints in the hospital to finally get an accurate diagnosis. After the first incident he was admitted into the ICU where he lost control of his body almost entirely for several days until the steroid medications began to reduce the swelling in his brain. The neurologists at our local hospital were perplexed as to what the cause of his symptoms could be. They ran a series of tests that ruled out everything from a stroke, a bacterial infection, as well as a multitude of other conditions that I can’t begin to remember. After two weeks in the hospital his facilities began to come back as the medicine did its job, and we stayed hopeful that it was somehow an isolated incident not to be repeated. He was released and began resting at the house as he recovered. It couldn’t have been more than two weeks later that I was woken up by my mom’s screaming in the early hours of the morning. As I ran the stairs I prepared myself for what I was about to see, filled with adrenaline and terror that even two years later keeps me awake in the night. When I reached the living room, I discovered my Dad on the couch having a full-on seizure, something that I had only previously seen in movies. Knowing little to nothing about what strategies to employ to help, I opted to pick up the phone and dial 911, and just as I heard the phone ringing I heard my Dad’s voice from the other room express that the seizure was over and that he felt fine. I hesitantly told the operator that things were fine, spent a few minutes making sure my Dad was responsive and lucid, and somehow returned to sleep. Less than an hour later I was awoken by the same screams, and this time I knew that another hospital visit was imminent. Thankfully, the doctors explained that a small reduction in the seizure medication was to blame and they sent us home that same day.

Over the next month my Dad returned to his normal self slowly but surely. His previous hospital stays were characterized by extremely abnormal behavior that the doctors attributed to his brain swelling. Things that he would have normally never said or done became commonplace while he was in the hospital. He forgot names, places, and other details. After the doctors adjusted his medicine he became more lucid. He was able to laugh at jokes and even bust out some of his own signature humor. While things were obviously different, namely his strength and ability to remain energetic throughout the day, things felt normal. They remained that way until Christmas Day, when another minor seizure sent us to the Houston Medical Center. The hospital was almost completely understaffed and made for a less than ideal celebration of Christmas. This visit was the most serious of the many that we experienced, as we called Houston Methodist our second home for over a month while doctors scrambled to properly diagnose my Dad’s symptoms. The team of neurologists there were incredible given the circumstances and after weeks of uncertainty and guessing, they were able to finally conclude that my Dad was suffering from autoimmune encephalitis caused by an antibody that was unknown.

For my family, a diagnosis was everything we had wanted; we could finally begin a treatment plan that was focused, instead of one that had no timeline or endgame in sight. By this time however, my Dad’s health had seriously taken a toll. As a result of losing his ability to walk he was bedridden for most of the month. It was also around this time in the hospital that something seemed to be off with him mentally, he was saying things that weren’t necessarily true and overall had developed a very bad attitude that led to frequent outbursts.

After another lengthy stint at a physical therapy center, Dad was finally able to return home. My mom worked tirelessly with him every day on his occupational therapy, encouraging him and try and stay positive. Things were okay again for a few months, but eventually took a dark turn as my Dad began having suicidal thoughts and began exhibiting symptoms of psychosis, leading him to believe things about the world that weren’t true. He was constantly worried about money and convinced himself that the police were looking for him and had a warrant for his arrest. He left the physical therapy facility in February and in April he attempted to take his life for the first time. Thankfully he was unsuccessful, but he did serious damage to his arm as a result and had to be admitted to a psychiatric hospital for a few weeks and had to undergo more physical therapy for his arm.

It was during his stint in the psychiatric hospital that I first reached out to the folks at the International Autoimmune Encephalitis Society where I received tons of resources about how to get Dad released from the psychiatric unit. Once he was released, it became apparent that IVIG treatments were the right treatment, but we were denied a total of 3 times by our insurance provider on the grounds that the treatment was not FDA approved and did not actually treat AE. Thanks to the hours of phone conversation with members of the IAES, I was able to eventually overturn the decision and Dad began receiving IVIG treatments shortly after. When we returned home, I could tell that he was tired of living, that his spirit was drained, and he was ready to give up.

Despite utilizing every available resource at our disposal, he succeeded in taking his life in late September of 2018, just three days before his 51st birthday.

It’s hard to describe my thoughts and feelings throughout the past two years because the only way I can think of it is as a never-ending roller coaster, constantly up and down with no end in sight, until there finally was one.

I would be failing to honor my Dad’s legacy if I failed to mention that he was an incredible man, the best man I think I’ll ever have the pleasure of knowing. That said, for me, the experience was agonizing and easily the worst thing I’ve ever had to endure. It felt like some days would never end, and it was exhausting trying to rationalize with someone’s who’s brain would not let them experience reality the way it ought to. The countless hours spent sleeping on uncomfortable hospital furniture, the excruciating hours spent at physical therapy being a cheerleader, and the anxiety of waiting for the doctor to step in the room are just a few poignant memories that come to mind when I think about that period of my life. Some of the happier memories involve performing daily miracles: like making my Dad laugh at a dumb joke or getting him excited enough about The Beatles to get him to sing along in the car.

 

This whole experience has shaped me and impacted me in ways that I cannot begin to describe. While my Dad’s battle with AE ended almost a year ago on September 20th, I continue to wage my own battle every day dealing with the repercussions of this deadly disease. It’s still hard to get out of bed some days because everything is a reminder that I’m here and he isn’t. I can’t help but think about what I could have done different, how I could have made his life a little better than I tried. I think these feelings are natural now that he’s gone. As much as I try to not let myself dwell on them they are always in the back of my mind. The whole-time Dad was sick I was in school three hours away, so many weekends were spent back home at the side of a hospital bed while I struggled through my sophomore and junior years of college. I somehow managed to stay in school and keep my grades up, and I’m looking forward to graduating this coming year.

For the first time in a very long time I can confidently say that I am genuinely happy and hope that by writing a little bit of my story that someone out there, whether it be a caretaker, a friend, a family member, or even someone who hasn’t heard of AE would be encouraged and inspired.

To all the caretakers out there – keep going and don’t let up. Use the resources that IAES has to provide the best care to your loved one. I can confidently say that if it weren’t for this organization my Dad would never have received IVIG treatments, which were instrumental in his recovery.

If you’re reading this, and can relate in any way, I’d love to hear from you about your experience. Much love to everyone.

Ryan

Contact Ryan at ryandinero@icloud.com

 

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

 

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

 

 

After 25 Years, a Proper Diagnosis-Autoimmune Encephalitis!

October 30-2019 | Lauren Mabry

In 1994 when I was 9 years old I was diagnosed with Epilepsy with partial complex seizures after my mom witnessed a bizarre event where my arm jerked wildly and I fell to the ground. These events occurred multiple times and I underwent EEG testing, MRI, and all the tests came back normal. We tried a few anti-epileptic drugs and eventually found one that seemed to stop the episodes. Fast-forward a few years and I started to have breakthrough seizures…

This became the routine: find a drug that worked, maybe have a breakthrough seizure, up the dose, breakthrough, worry about having a breakthrough, or maybe go years and be fine.Things were challenging for me off and on throughout college as I seemed to be unable to stabilize my episodes for a year or two. And then I was fine for many years up until I was told I had to switch medication to get pregnant and so I did. I switched to the “safest’ medication and things seemed to be fine until about halfway through my pregnancy with my first son in 2015 and then things went haywire. I suffered these partial seizures every ten minutes. I hardly slept. I had to go on short term disability from my job at 5 months pregnant. I could barely speak. Eventually things semi-stabilized.

The goal was always to go back on Topamax, the drug I had been on before my pregnancies as it had been working, but when I finally switched back to this drug in November 2018 my body appeared to just reject it and instead I just started to have multiple episodes per day. My doctor. sent me to the hospital for inpatient video EEG monitoring. I was in the hospital for about 3.5 days where I had 87 episodes. I barely slept.

On the last day in the hospital my doctor took bloodwork for an autoimmune panel. It was the last thing we did while I was in the hospital and at the time I barely thought anything of it. At my follow-up appointment my neurologist told me I have autoimmune encephalitis – my brain is on fire. We did a round of prednisone steroids where I could literally feel my brain cooling down. Within a couple of days of being on the prednisone my seizures that I had experienced multiple times a day for 4 years stopped completely.  We followed up the oral prednisone with IV Solu-Medrol and it’s now been 8 months and I’m still seizure free AND off my anti-epileptic medications.

Autoimmune encephalitis is still a very new disease in its infancy of research. It wasn’t even discovered and published until almost 12 years after my initial diagnosis of epilepsy. I saw neurologists in VA, at Johns Hopkins, and UCLA over the years and it wasn’t until I moved to Pittsburgh, PA that I was finally properly diagnosed.  I don’t say this to place blame on any of my previous doctors, but to raise awareness that it can save your life to get a second or even third opinion about what is going on in your body.

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

 

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

 

The Story of an Anti-GAD Autoimmune Limbic Encephalitis Survivor

September 4th, 2019 | Leigh Ann Broyles

My struggles with Anti-GAD Autoimmune Limbic Encephalitis started when I fell off the roof of my house. Well, technically my symptoms began way before the so-called “Roof Incident”. For months I had been behaving erratically, feeling physically and mentally exhausted but suffering from insomnia, having terrible headaches, a stiff neck, and vision changes. By the time everyone realized that something was wrong, it was too late for early intervention.

Then came “Roof-apocalypse 2017”. I woke up for work with a large bruise on my hip and leg, and somehow my brain convinced me that it was no big deal. I had fallen off the roof the day before when I was attempting to trim the large tree in our front yard. It was encroaching on our roof, and I had taken matters in to my own hands. I went into work that morning and complained about how much it hurt. The thing is, I have never been up on any roof, let alone my own. I suffer from a fear of heights. Getting up on a foot stool typically has me shaking in my boots. We don’t even have a ladder to climb up on. I was one hundred percent sure that I had been up there, though. My brain remembered falling into the bushes, remembered the impact, and remembered an elderly neighbor coming outside to check on me. Except we don’t have an elderly neighbor, and the tree looked the same. It was still sitting on the roof where it had been all along. I had never been on the roof, and as it turns out, my brain had been lying to me for a while.

A few weeks later, I was late to work, and my boss became worried. I can count on one hand how many times I’ve been late to work in the past 16 years. Being late is exceptionally unlike me, and is one of my pet-peeves. I work as a vet tech for an emergency and critical care department in a very busy specialty veterinary hospital and being late impacts patient care.

My husband had been working overnights at the time, and my boss decided to call him since I wasn’t answering my phone. My husband rushed home in the early hours of the morning and found me in our backyard. I was laying under a bicycle having a grand mal seizure. We still don’t know how long I had been outside, or how long the seizure activity had been happening, but we knew that it was long enough for all of the skin to be worn off of my knuckles, knees, and ankles. I had road rash on one side of my face as well. The date was May 25th, 2017.

I was rushed by ambulance to the closest hospital, and the police were called. My husband (who is the sweetest, most gentle man) was interrogated and accused of beating me. I was accused of being a drug addict and alcoholic. The neurologist on staff refused to acknowledge that my issues were primarily neurological and didn’t even believe that I had suffered from a seizure. He sent out toxicology panels, all which came back negative. At this point, my family was aggravated, and demanded answers. Multiple EEG’s, CT Scans, and MRI’s later, nothing had changed. A false diagnosis of psychological issues vs. potential viral/bacterial meningitis was doled out to them. I was placed on anticonvulsants, IV fluids, and antibiotics (as my white blood cell count was elevated, and my kidneys had taken a hit from prolonged seizure activity).

I seemed to improve, and luckily, was transferred to a physical therapy center. By no means, was I normal at this point, but the neurologist “saw improvement” so he discharged me as quickly as possible. I assume it was like a horrific game of hot potato. I spent an unknown amount of time at the physical therapy hospital. I ended up developing nystagmus on top of my ataxia and aphasia. I had my second seizure, but this time it was witnessed by medical professionals. Honestly, I still don’t remember the first hospital, the physical therapy unit, or the majority of what was to come.

I was taken to my saving grace, Medical City Plano. I entered through the emergency room and was admitted into their neuro ICU. Because my seizure activity was resistant to multiple anti-convulsant medications at that point, I was intubated and placed in a medically induced coma. For the first time since my initial seizure, my family and friends found comfort in a doctor. Dr. Lei Wang (a neuro-hospitalist) took over my case, and oversaw all things relating to my care. She read through all my records and suspected that I may have Autoimmune Limbic Encephalitis. She immediately repeated all scans and started me on methylprednisolone and IVIG. She was, and continues to be, my knight in shining, sparkly high heels. I know that without her knowledge, insights, and willingness to have an open mind, I would likely be dead. Once she initiated treatment, she sent a plethora of antibody testing out. Some took longer than others, but in the end, I tested positive for GAD 65, and I finally had an answer and a diagnosis. I continually improved, ended up extubating myself (whoops!), and started to feel like a human again. When I “woke up” I had no idea why I was in a hospital and had lost all memory of what had happened over the past 4-6 months. I don’t remember moving into our new house. I don’t remember the Christmas before we moved. I don’t remember work, or illness, or anything in between. It’s a blank, blackness in my mind. I existed, but my memories do not.

In total, I received 9 IVIG transfusions, had over 50 IV catheters, two PICC lines, one central line, was on tapering steroids for a year, and two different anti-convulsant medications for a little longer than that. I spent a month hospitalized between the three facilities. I have completely recovered with no signs of relapse and no major lasting effects two years later. I continue to suffer from depression and anxiety and have been started on medications to help. There was a short time where driving to a doctor’s office would throw me into a full-blown panic attack, but since starting on medications, I can confidently walk in with a smile and steady hands. Better living through chemistry, I suppose!

To all of the patients, the families, and the friends who deal with this disease: It can be ugly, and it can be scary, but in the end please do not give up hope. Remission and recovery are possible. Living a normal life is possible.

Always keep fighting, and don’t ever give up. You are not defined by a disease.

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

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

In Sickness and in Health, A Wife’s Journey as an AE Caregiver

August, 21-2019 | Roberta Borchardt

It was the day after Labor Day, Tuesday, September 6, 2018.  I was sitting in the emergency room At El Camino Hospital in Mountain View, CA, watching the chaos that was now surrounding my husband who is lying down on the bed just a few feet away from me.  I knew something was very wrong with my husband, but now reality is setting in that things are about to change forever.

Let’s rewind for just moment to three weeks before September 6th when my husband had gone to see his regular doctor due to some abnormal body and nerve pains.  His doctor thought the body pains might be fibromyalgia since they were lasting so long, but I really wasn’t buying that.   It was certainly strange, but nothing to panic about so we made an appointment with a neurologist for a nerve test a few weeks out which just happened to be on September 6th.

It wasn’t until September 1st, the Thursday before Labor Day, that the body aches and pains stopped, and things started to shift.    He came home early from work on Thursday.  He was sweating and pale.  I asked him why he was home early. He said his boss sent him home because he wasn’t completing thoughts during their conversations.  Weird I thought, and he looked awful, so I told him to go take a nap.  Having a high-level corporate job with a growing company can be overwhelming at times and it has caused him to get sick in the past so perhaps it was just stress induced.   Friday was a vacation day and he seemed OK, but then Friday night we went out to dinner. When he looked at me from across the table it was like he was looking through me.  The only way I can describe it is that he looked like a serial killer.  I realize that’s a horrible thing to say but that was truly what he looked like.  It was downright spooky.

Then that evening he started to sit straight up on the edge of our couch (which he never does) and that night and through the weekend he was sleeping really stiff in bed, like a mummy. Then the cognitive issues set in on Saturday and he started to decline rapidly.  By Sunday he couldn’t complete a sentence. He would start to speak, and the last words of a sentence would just not be there.

Then there was the dog incident. Every time out dog goes potty outside she asks for a treat by sitting and staring at us until she gets one.  Standard behavior she has done just about every night of her life.  So, when she was staring at him because she wanted a treat for using her pee pad outside, he turned to me with a totally confused look and said “why is the dog staring at me?”.  Now I’m starting to freak out a bit.

By Sunday he became really lethargic, could barely start a sentence no less complete one, lost interest in just about everything, and couldn’t recognize objects I would show him. We already had an appointment with a neurologist on Tuesday, so I thought that was our best chance of getting the right care rather than going to the emergency room on Sunday.  Since Monday was a holiday, I didn’t think the right doctors would be there, so I decided to wait.  By Tuesday morning he could not cognitively function at all.  I was guiding him to the car to get him to the doctor.

Once we arrived, I told the technician who was supposed to start the nerve test to get the neurologist in the room asap because something was very, very wrong with him.  She tried to tell me I didn’t have an appointment for that.  Clearly, she didn’t know who she was dealing with.  I told her to go get the doctor NOW!  Then a nurse came in and tried to tell me the same thing.  I lost it.  I started to yell and cry and demanded she get the neurologist immediately.  Once the neurologist came in it took her less a minute of questions and observation before she said “get to the emergency room right now!”

Unbeknownst to us at the time, she happened to study AE as an undergraduate at UCSF and knew the symptoms.  She also told us exactly who to ask for at the ER and the hospital was less than 10 minutes away.

Almost immediately upon our arrive we were whisked into a room and were being seen by their neurosurgeon who specialized in AE.  She explained to me what she thought was going on.  Autoimmune what????  She told me what AE was and all the treatment and tests to follow.

Due to the quick onset she was worried from the get-go. From there it was a testing frenzy. MRI, Spinal Tap with samples going to Stanford and the Mayo Clinic, CT Scan and tons of blood work. The urgency was obvious.

As I sat their dumbfounded all I could think about was 1) how do I explain this to his family, and 2) is my husband going to be a vegetable?  That probably sounds like a horrible thing for a wife to say but that was where my head was at.  He was the strong one, always totally sure of himself, always knowing what he is doing and where he was going in life.  It was just infused into his personality to make sure our future was solid.  Seeing him so helpless on that hospital table I couldn’t help but think if everything we dreamed about for the future would now be gone or in serious question.

You might be saying to yourself at this point “geez she was awfully selfish.  It’s all about me, me, me me!”  You would be correct.  I was being completely selfish and needed to grow up.It was time to put on my big girl pants.   I now had someone who needed to rely on me now, so I better step up.  I can count on one hand how many times I had been in a hospital, and now I was about to spend 10 days there.  It was 8 am to 8pm, taking it day by day, hoping for the best but getting ready to deal with the worst.

The MRI was negative, but the initial spinal tap results showed an elevated white blood cell count.  She wanted to start treatment immediately but needed the results from Stanford to make sure it wasn’t AE with a viral or bacterial infection.  The standard protocol, which is IV steroids, cannot be used on a viral or bacterial infection.  She called Stanford and bugged them for the results (they are only about 20 miles away) and it was luckily neither of those.

Due to her extensive knowledge of AE she determined from the symptoms and elevated white blood cell count that it was Autoimmune Encephalitis.  His antibodies were also sent to the Mayo Clinic to identify what type of antibodies he had but she was not going to wait 10 days for those results to start treatment.  Whatever antibody it was the initial treatment was the same, so she got started immediately.

This was the best of all circumstances one could ask for.  It’s why it’s so important for people to see an AE neurosurgeon as quickly as possible so they can get the right diagnosis and treatment.  Any additional time spent with a wrong diagnosis can lead to so many more years of recovery due to more extensive brain injury occurring.

So, we started with the 5 days of IV steroids and then 3 days of IVIG treatments to follow. All in the hospital, thank god, since I don’t think I could have taken him home in the state he was in.  He was really scared, and I was doing my best keep him in good spirits and to keep myself together at the same time.

During all of this I am getting phone calls and texts from friends, family and coworkers asking how he was and what the hell is autoimmune encephalitis.  Fair questions, since I had certainly not heard of it before this happened.   As he started to get a little better, he didn’t want to talk to anyone or have any calls because he couldn’t form complete sentences yet and his voice was very weak.  He also didn’t want any company which was difficult since everyone wanted to see him.

Then there were the memory issues.  He had a really hard time with names and retaining them in the beginning.   From day 1 to day 4 he only could verbally remember my name and, of all people, his boss.  Nobody else.   He recognized some people but could not say their names.   I remember sitting in bed with him and watching a Tom Cruise movie.  He recognized Tom Cruise as someone he should know but did not know his name.

He couldn’t understand how to use his cell phone until day 6 or 7 and then I had to show him how to use it.  His reading, motor skills, and mathematical skills didn’t seem to be too affected.  (I know, totally weird.  Don’t try to figure it out or your own brain might explode. 🙂

He improved dramatically every day that went by.  The zombie staring finally went away about day 6 in the hospital.  He could talk in full sentences, although his voice was still hoarse and not very loud, and he started remembering most routine things in his life.

The tests came back from Mayo and his antibodies were not identified as any of the ones known at this time. (They were actually donated to UCSF in hopes of identification someday.)   After 10 days in the hospital we went home.

The first few weeks were interesting. Some things came right back, others, not so much.  His long-term memory for the last 10-15 years seems to be gone.  That’s been the hardest thing since we have only been married 12 years.  Things come back kinda like dreams but only if I show him pictures or tell him stories.  I showed him our wedding video and he doesn’t have much recall which was a bit disappointing, but understandable.

Once home, I asked him to start a daily journal to keep track of his progress.  He showed me his first entry.  It was in cursive.  He hasn’t written in cursive since he was a kid.   I asked him why he was writing like that and his response was “you have to write a journal in cursive”.  Huh?   He was dead serious when he said it so I just went with it.  I couldn’t read the thing since the writing was terrible, but eventually it got better. It took him quite some time to get back to his normal printing which is actually quite neat.

Getting his signature back was also quite a struggle.  This was a weird one.  He couldn’t sign checks because he couldn’t get his signature right.  He was so frustrated, and it would stress him out so much that he would shake when he tried to do it.  I felt horrible for him.  I signed all the checks until he got comfortable again signing things.   I had him practice on some paper where there was no stress to get it right.  He couldn’t understand why it was happening and I had no answer for him except that he had to give it time. It eventually came back but it did take a few months.    There seemed to be no rhyme or reason as to why some things came back quickly while others took months.  That’s when I realized that the brain is not something we were ever going to figure out and we just had to go with the flow.

It was the higher brain functions that took the longest to come back. Work was the last to be addressed. He initially took a three month leave of absence in hopes of returning in November. His boss and team have been fantastic through this. Super supportive. They all truly care about him and had made it perfectly clear that his job was in no jeopardy. He was to get well and have no worries about work. Such a great group of people we really couldn’t have asked for anything better.

For some reason a lot of his work knowledge from his current company came back which is within the last 5 years.  However, conversations and presentations he had given were gone from his memory.  Any get togethers he had, whether it be for work or otherwise were also forgotten.  But information and learned materials seemed to be there.  I think most of it was actually relearning a lot of his work skills which is really amazing considering the high brain function required for that.  After about a month at home, I had him slowly go through old emails he had sent to people so he had a feel for what he used to do and how he did it.  Only a few minutes a day at first and then we built up from there.  In the beginning he got tired very easily, so I had to force him to take lots of naps. I had to watch him very carefully since I just wasn’t sure at first what he was going to be capable of doing without putting undo pressure on his brain.

I mentioned above we had to go with the flow when it came to this entire process.  My husband is not a “go with the flow” kinda guy.  He is someone who wants to know how to get from point A to point B.  He wants a schedule and to know what he needs to do to accomplish the goal.  I had to explain to him that the brain does not work that way.  There is no exact path.  It will tell you when and how your recovery will go.  If you push it you will only go backwards.  Wow, did that piss him off.  So frustrating for him.  The man who always has a plan couldn’t really have one.

Then there are the emotional issues.  This one really threw me for a loop and has been the hardest to adjust to.   My husband is an introvert.  Quiet, stable, hard to read, and doesn’t show a lot of emotion.  Tends to keep things inside, which is probably why he does so well in corporate America.  Very few people don’t like him because he is so even tempered.   So it was a shock when we got home and there was a significant change in his personality, particularly when it came to his emotions.

First there were the panic attacks.  I have never seen him have one, ever.  The first one was when he couldn’t remember his password to Quicken, which had all of our financial data on it.  He lost his freakin’ mind!!  I hardly knew what to do because it was such a strange behavior coming from him.  So, after the initial 5 seconds of total shock, I realized I had to be the voice of reason which, if you knew me, would be the funniest thing in the world.  HE was always MY voice of reason.

It was seriously like walking someone off a ledge.  I had to sit him down and tell him it wasn’t the end of the world and that we would call customer support and figure out how to get into his files.  I also told him to take deep slow breaths.  In and out.  In and out.  This had worked for me in the past so thought I would give it a try.  Sure enough it helped.  Thank goodness because I’m not sure what I would have done next.  There would be more of those meltdowns to come and I got better and better at handing them.  Talk about role reversal?  Wow.  I was the meltdown queen!  Not anymore.  I’ve had to keep those big girl pants on even today because we are in no way at the end of this battle.

Then there was the crying.  When we first got home he cried at every little slightly sad thing.  I was totally confused.  He has cried maybe twice since we had been married, but about 30 times in the first two weeks we were home.  It took pretty much nothing to trigger him and he was not even sure why he did it most of the time.   He always cried when something sad was, say, on tv, but it was not sad enough to invoke tears, normally.  We kinda turned it into a joke. Every time he cried I laughed and asked why he is crying.  He would say he didn’t know and then we would both start cracking up. Hey, if you can’t laugh how else are you going to heal, right?  He doesn’t do it much anymore, but we went through a lot of tissues those first few weeks.

Some of the personality changes have been a good thing.   His emotions are now much more on the outside than the inside.  He may cry more but he laughs more too which is great.  Just the other night we laughed at something so stupid, but we laughed so hard we were in tears.  We never did that before.   We also talk a lot more.  You really must.  Once you go through something like this you either get closer or it tears you apart.  The former is definitely true for us.

As a caregiver, this whole experience has taken a big emotional toll. I’m dealing with someone I know, but now need to get to know all over again. I sometimes find myself standing in the middle of a room, thinking how much things have changed, yet little by little realizing we have come to a new sense a normalcy.

In the hospital things were easier.  I wasn’t responsible for this person getting by day to day.  I could leave the room to have a good cry, but once home that wasn’t an option.    Life as I knew it would never be the same.  AE patients feel that way too but it’s different.

From a treatment perspective we were very lucky to have gotten the care we did in the time-frame that we did.  However, he is still in recovery, not “cured”, and every day I see the person who used to be confident about everything and never question himself, to someone who is constantly questioning everything.

I’m on edge a lot watching for things to go wrong.  You can’t help doing that as a loved one.  You dissect every little thing and wonder constantly if this is the way things will be for the rest of our lives.

He is back to work full time now. Although the doctor gave us approval to have him start back to work in January, I was the one who had to decide how it would be done since I knew the stress level and high level brain function required to do what he does.  I had to watch him start back slowly and hold him back when he wanted to do more.  Not fun.

He started for a few hours and then worked his way up to the full 8 hour day.  However, he comes home every day at 12:30pm, takes a nap, and then works the rest of the day from home.  I don’t think he will ever go back to work like he was before.  That required no less than a 50 hour work week which is normal to sustain a job at his level.

He’s already talking about having to give up the position he has now, which he worked so very hard to achieve, and take a different job within his company that requires less of a workload.    He has already had to decrease his workload significantly.   It’s a huge ego hit even though the company is doing their best to help him by making changes and reducing his team.

Then there are the financial concerns.  He wants to retire earlier than he had planned before just in case something goes awry.  We’ve met with our financial adviser several times just to work out “worst case” scenarios” because with this disease you just never know.

So here I am, not only wondering what our future holds, but having to tell him everything will be OK when I am not sure that it is.  I try not to show him how stressed I am because that just makes him more stressed and gets us nowhere.

It’s hard for people to understand what I am going through.  I don’t want to worry his parents, so I tell them just as much as I think they need to know.  My friends, when I tell them about what happened to Gary, say “Holy cow, that must have been terrifying for you!”.  My response; Yea, it was, and still is.

So, the journey continues.  Where it ends, who knows.  But we will take it together and conquer each challenge as it comes.  For all you caregivers out there who want to put your fist through the wall and scream “why me?” I give you the cheesiest line ever with a twist.  When life gives you lemons, make lemonade.  BUT, remember this….you can only make lemonade if you have sugar or it tastes bitter.  Your strength and resilience is the sugar.  Without it, all you have left is a bitter taste in your mouth.  So, hang in there and make some sweet lemonade. ?  You’re stronger than you think.

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Under 5 Years old with Autoimmune Encephalitis~ A Homecoming Survival Guide

July-10-2019 | Kayla Demay

After watching your child endure Autoimmune Encephalitis in the hospital, anyone would be grateful when the end is in sight and they’re bringing their little one home. It seems like the end of a chapter you’d never want to read again but really, it’s just the prologue to a new novel; Life After.

Aside from the doctor’s notes, the medications, occupational, speech and physical therapist visits, nurse visits and appointments; just living, just home life in general has changed. You are grieving the loss of your child’s personality and they are struggling tooth and nail to regain what they’ve lost. There’s lots of coping strategies I’ve found along this journey with my child. I’d like to share them because it was excruciating to figure out, and I’d love to spare you and your children more pain.

  • They’re seeing their world through new eyes, and it’s very scary and overwhelming. Limit outside company and time spent away from home for the first couple weeks.
  • Make a very repetitive and simple schedule through those first weeks and stick to it religiously. They may have trouble understanding the passage of time and what has/hasn’t happened. When everything happens at the same time every day, it creates a rhythm that will help them through this. Explain what has happened and what will happen at what times over and over when they ask.
  • Use blankets to cover the windows in their bedroom. Even kids that were originally afraid of the dark can find the light to be too much, and they find comfort in the dark cocooning of their room. Darkness naturally helps regulate their sleep too. Let them surround themselves with things they like, things that make them feel safe. Weighted blankets are very good for feeling safe as well.
  • Pay attention to the signs of your child’s fatigue and say whatever needs to be said to get them to lay down the moment you see it. Structure the whole day around those naps, because they are SO important. If they try to power through it, they may have a major meltdown, exhaust themselves in a fit of irrational rage or overwhelming sadness, or physically hurt themselves and that is hard on them. Make their teachers aware of that particular need if they’re going back to school, get an IEP or a note from the neurologist saying so if need be. They NEED their rest right when they need it or else, they’re gonna have a bad time.
  • Sometimes, no matter what you do, they’re going to go into an irrational rage and they’re gonna have a bad time. Did you blanket the windows in their room? Create a space where they can let go and scream and wail and throw things and hit things. You can worry about replacing your door jambs later, right now they have no control and neither do you. Just hang on and love them through it the best you can, sometimes that’s ALL you can do. That’s nobody’s fault.
  • Get yourself and your other children therapy. Your AE Warrior needs SO MUCH from you, and you may find yourself swallowed in grief when parents who don’t have to shell out 14 medications a day or live in fear try to invite you to things you know you shouldn’t go to yet or constantly ask how they’re doing, expecting to hear some equivalent of “Oh, just fine!” But it’s not fine. It takes time. There should be no shame or hesitation in admitting that you need some time off or some meds or some help. These conditions change everything for everyone in the family.

My heart grieves for all of you and I hope what I’ve found through my experiences with this darkness helps you light the way!

Hug those little warriors for me.

 

 

 

 

 

 

 

 

 

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My Daughter Has Autoimmune Encephalitis, And Here’s My Regret

June 26-2019 | Cara Arnold

My daughter was born a firecracker. Seven pounds of sugar and spice, with these big, beautiful eyes through which we’d both take in the world. She was brave. Or maybe just innocent. But nothing scared her. And the two sets of stitches she had by her first birthday was proof of that. She loved without bounds, and in return everyone loved her.

She was my first. And I celebrated her firsts.

Her first word, her first tooth and her first steps. Her first birthday, her first gymnastics class and her first school day. Her first awards ceremony, t-ball game and cheer competition. And so, the list goes on.

These firsts were characterized by cheers, often celebrated by many and marked by pictures. Pictures of the moments already frozen in my mind.

These are the firsts a parent looks forward to. The firsts I thought we’d share a lifetime of. The firsts that, unfortunately, chronic illness robbed me of.

As vividly as I remember these “firsts,” I remember a last too.

Her last “good day.”

And I wish with everything I have I’d stopped to enjoy it more. Or, at all.

It had been a long day. And she had taken an extra-long bath, and “forgotten” homework until the last minute, and then chose the longest bedtime story. And we were tired. Or, I was tired. And I rushed through the story. Never looking up at her taking it in. Expecting many more. And I skipped words, and even pages where I thought she wouldn’t notice. And every day since I’ve wished for those words back. Because she awoke in a different world.

The world of autoimmune encephalitis.

A world where her body attacked her brain. Where antibodies meant to fight infection instead attacked her nervous system. A world where her brain was described by doctors as “on fire.” And in this world, she was paralyzed. A girl, my girl, who had been throwing back handsprings the day before now couldn’t move. Gymnastics and softball were replaced by hospital stays and physical therapy and her carefree laughter by shrieks of pain and terror. The fight for homework to be completed or for her to “just go to bed” that had made me bonkers only hours before paled in comparison to this fight – one for her life.

Literally, overnight our world changed.

And again, there were firsts.

Her first seizure, her first hallucination and her first ambulance ride.
Her first EEG, hospital stay, and infusion.
Her first PICC line, feeding tube and port.
Her first wheelchair and walker.

These firsts are also frozen in my mind. They lacked fanfare, for obvious reasons. But the silence that accompanied them meant they lacked support. Support for me, necessary to support her.

And these firsts, cruel though they were, had a purpose. They prepared me for other firsts – like the first time I prayed she’d make it to the hospital or reckoned with the idea from there she may never go home.

And those firsts are the most isolating part of illness.
The part nobody shares.
Because they’re huge. And etched in your mind. But not celebratory.

Gracie is a fighter. I’m quick to say that.
She has good and bad days, and I can voice that.
But, whether I’m protecting her or me; the depth of the bad days has stayed a quieter battle.

Things have stabilized for my girl. She had her first round of chemo. And is now home from the hospital more days than not.

And again, we’re experiencing new firsts.

Her first IEP. Her first partial day of school. And her first time on an “all inclusive” sports league. And I celebrated these moments. Because they were big. They were moments I didn’t know would ever come. But I celebrated them alone – because they aren’t the kind of firsts you can explain.

And the hard part in writing this is I know if they knew I needed them, and if they knew how, my friends would have been by my side. But illness isn’t like that. Nor is “special needs” parenting. There’s no “what to expect when you’re expecting” sort of guide. Because it isn’t what anyone is expecting.

There were firsts I never thought of.
And would never want another mama to.
But if I see one experiencing a medical crisis now, I do speak up.
Even if it’s just to say, I’m here,
Because I know illness is scary.
And never meant to be navigated alone.

 

Parenthood, even under normal circumstances takes a village.
A village on the good days – and the bad.
But parenthood with illness REALLY calls for a village.
A village of support, shared resources and shoulders to cry on.

And to the mamas who need a village, reach out.
Because other mamas do too.
I promise.

We’re here… waiting.

 

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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. Tax ID# 81-3752344 Donations raised directly supports patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

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