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.
You are so very lucky you got quick care and treatment. My husband went misdiagnosed for 18 months. 4.5 yrs later and we are still fighting for his life. Nothing has returned to normal, defintley will not go back to work. The world of our life is all on my young shoulders as I work, caregive and pay all the bills. Life is VERY VERY hard. Everything taken from us including having children. This is a HORRIBLE HORRIBLE disease 🙁 Good Luck to you guys.
Great article. We’ve been dealing with AE for 5 years. My grandson has short term memory loss, just like the movie “50 First Dates”. He spent 107 days in the hospital. 46 of those in PICU and 30 of those on life support. He also spent 4 months at a live in rehabilitation hospital as he reverted to infantile status and had to learn everything again. He is now 13 but does not go to school. He has a teacher come 5 hrs a week to work with him. He also has a VNS implant to keep his seizures under control. He gets IVIG every 4 wks. I am his caregiver so I know the struggles you encounter every day. I try to keep a smile on my face for him ? and do the crying when I go the bed. I feel blessed to be his caregiver and advocate cuz then I know he’s getting the best care. ??
Where in Norcal do you live. I got diagnosed late 2017/early 2018, working at Stanford University. My mayo testing both blood & CSF came back positive for LGI1. I had a rough year on high dose steroids for 6 months. I had filed for divorce in July 2017 & my wife moved out in January 2018. I had no caretakers, on my own. It was rough. I went to a national weekend long survivor meeting in Feb 2018 in Seattle, it helped immensely knowing I wasn’t alone. I’ve seen Dr Geschwind at UCSF a few times to get 2nd opinion, but my primary Neurologist, Dr Walter, is great. I’m currently on Keppra, they tried to reduce me to 0, but did a EEG midway & I had some issue so they bumped me back up a bit.
I lost 2017 almost completely, my current memory is sketchy, having to write a lot of notes. I lost 40+ IQ points & find it difficult if not impossible to multitask.
I’d like to connect with you/your husband. I’m on facebook.
Sitting in ER having more tests done. My husband was diagnosed with LGI1 in March 2020. Due to COVID, testing and treatments have been difficult to coordinate. Has been on Pregnisone – 60mg- for about 6 weeks after a 5 day infusion of 120 per day. He gets confused and his memory is shot. Not sure if that is from LGI1 or the steroid treatment. He is bloated, his skin is covered in acne and he has extreme fatigue. After 2 weeks of intense heart burn, We came to the ER to see if there is something else happening or if they can give him something to soothe the pain. He is getting care from Neurology team from OSHU in Portland. But we live 4 hours away and Portland is being hit by COVID so his appointments are thru telemedicine. I feel as if this is being drawn out longer than it should. We feel very alone In this battle. Any suggestions or thoughts?