January -8-2020 | Mari Wagner Davis, RN
I have been a nurse since 1985. I was working as a nurse case manager when I was at work in December 2017. A co-worker, who I have worked with for years, noticed I was acting strange- laughing inappropriately, busy but not really doing work. We shared an office and she took my keys out of my purse because I had talked about going home and that idea scared her.
What neither of us knew at the time was that she saved my life. Because I couldn’t find my keys, I went back to the unit I worked on, shortly after that I had a seizure. I was hospitalized and after a few days of testing, I was diagnosed with anti-NMDAR encephalitis. Anti-NMDAR stands for anti-N- methyl-D- asparate receptor encephalitis. It is an autoimmune disease where the body creates antibodies against the NMDA receptors in the brain. The antibodies disrupt normal brain signaling and can cause seizures, memory problems, cognitive issues, speech disorders, neuropsychiatric symptoms as well as other symptoms.
I was treated with steroids, IVIG and plasmapheresis. I had inpatient and day therapy rehabilitation. I also did a computer cognitive therapy program. Recovery can be slow. Many patients with autoimmune encephalitis are left with memory problems, cognitive deficits and have problems in situations that are cognitively demanding. Memory continues to be an issue since my diagnosis with AE.
I have a calendar and use my phone to keep track of my schedule but what I have found is that people treat me as I was before, that would be great if I had my normal memory, but I don’t. That is part of the problem with having an invisible disability. If you didn’t know what happened to me, I look and can for the most part act “normal”- whatever that is. But in truth, I have trouble remembering previous conversations.
What was easy for me in the past takes far more of my energy than it used to. I find it is difficult to follow a conversation in a group. There is too much information for me to take in at one time. Sometimes in a conversation with several people, it exhausts me, I lose my place, and end up not trying to carry on and be a part of the conversation- it’s just too much for my brain to process. I just give up. I may experience “flooding” where my brain cannot take in so much information at one time. People in the conversation may notice I get quiet. They may think that I disagree with them or don’t like the topic. In truth, I may have lost track of the conversation and have no idea what the topic is.
Things that were easy for me in the past are difficult for me now. For example, recently my sister sent me a text asking me to bring two side dishes to a party to celebrate my Dad’s birthday, I don’t remember having a conversation about it at all. I looked back at my texts and found a message from her. In the past, this would be something I would remember and follow up on. Now, I have no memory of the subject at all.
There are ways for others to help those of us with Autoimmune Encephalitis become more comfortable in these situations. So, for family members and friends of those with AE these tips may be helpful.
1. When you start a conversation about plans previously made, talk about the previous discussion that was held. Help by cueing the person. For example, you may say “I messaged you before about dinner on Friday the 12th and wanted to make sure you were still available.” That reassures me that I did have a conversation about it in the past and reminds me of the topic and date. It also allows me a chance to confirm it.
2. If you are asking me to do something, refer back to what had previously happened and provide contact information if you have it, for example, “Last year for the block party you scheduled the Police department to come and register bikes, can you do that again this year? if you can, I will send you the contact information, Let me know by Monday the 8th”
3. If we have made plans, contact me several days or up to a week before to confirm, for example, “I have on my calendar that we were going to the movies on Friday the 10th at 7 pm, will that still work for you?”
4. If we are going someplace where there will be people I may have only met once before, take the time to reintroduce me to them. My husband will usually tell me, “you met them before at the game, but this is John and Mary”
5. When my husband leaves for work and I am still asleep, he leaves a note telling me that he left for work. He knows that if I am not aware, I won’t be sure of the day of the week and may look around the house for him and be anxious about where he is.
Letting family and loved ones know that incorporating these types of supports helps us remain social and successful is truly appreciated. It can keep us from becoming overwhelmed or “shutting down” and allows us to participate fully with more confidence. Trying to stay socially involved is important. Taking a little extra time to do these things will help us to recall previous discussions and allow us to feel more comfortable.
As time goes on, and friends and family learn the types of difficulties their loved one is experiencing, it will be easier to anticipate situations that they may have trouble managing. Coming up with solutions by troubleshooting these situations is the best support you can provide.
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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