December 8, 2021 | By Mari Wagner Davis, RN ACM
The staff at IAES is proud to present an informational blog written by our wonderful Support Services Coordinator, Mari Wagner Davis. Mari is instrumental in helping AE Warriors, their families and caregivers receive the information and services necessary to optimize their diagnosis, care, and recovery. She is a mighty warrior herself and developed strategies that have not only greatly helped her but have also aided hundreds of others on their AE path forward. We hope you find the information and story to follow, helpful!
My name is Mari Davis, and I am the Support Services Coordinator with the International Autoimmune Encephalitis Society. I was diagnosed with limbic encephalitis almost 5 years ago after having seizures at work. After being diagnosed with AE, I received plasmapheresis, IVIG and steroids. Due to ongoing seizure issues, I remain on seizure medications, and I continue to have memory issues.
After my initial diagnosis and treatment, I had a brief inpatient rehabilitation stay and then was able to move back to our home and transition to a day rehabilitation program. I was, also, able to complete a cognitive rehabilitation computer program. As time went on, it became apparent to me that there was little known about what rehabilitation services may be best for AE patients like me and those with other forms of AE. We all differ greatly in our AE recovery and rehabilitation but many of us have similar issues. I began to question and investigate what services could help to provide the best possible outcomes and help those with AE reach their maximum potential over time. For example, I have noticed that I have improved greatly in some areas and not so much in other areas. I have memory issues and have issues with divided attention. I find it difficult to multi-task. Although inpatient and outpatient rehabilitation services ended, I have continued to work on making progress in the areas that I struggle with. With my background and work as a nurse case manager coupled with my own diagnosis of AE, I have been on a quest to find ways to better outcomes not only for myself but all those with AE. Although inpatient and outpatient rehab is wonderful, for me, it has not been AE specific enough.
Many of the areas that I have made the greatest amount of progress on are by developing methods and strategies that I have come up with myself and with the help of others and may be beneficial for those with AE. Realizing and accepting that I have a memory issue has made me become more organized. I have had to develop adaptive strategies for myself. Many of these ideas were not taught during rehab. In the following paragraphs, I will outline strategies that have greatly helped me.
When I plan meals and go food shopping, I save and write my grocery list and organize it by meal versus simply making a list of random items needed at home. Before I started doing this, I would forget what I had planned on making and because of this I became confused and frustrated. When I plan to make a meal, I will leave something out on the counter to remind myself of what I planned to make. It is a visual reminder of the meal I plan for that day. Another visual reminder strategy I use is to leave the light on that goes to the laundry area in our home. This visual cue helps me to remember that ‘light on’ means laundry being done. I then remember to go and check on the laundry’s progress. Another visual reminder cue I find useful is to leave my medication bottles on the counter and use a pill organizer. This makes it easier and ensures that I take my medications and keep track of when a med refill is needed. I feel what is out of sight is out of mind. Visual cues have been a very big help for me in overcoming memory issues.
Another way this strategy has been useful is to keep a calendar on my refrigerator. I note events on the calendar and keep this same event calendar on my cell phone. I then utilize the various alarm features and different sounds on my phone for specific events. Having the calendar on the fridge is a visual reminder for me but also lets my husband know what I have planned for certain days. One small thing I do is to call him when I leave the house and call him when I arrive where I am going. This gives him a sense of comfort knowing that I remembered the planned event, have arrived on time, and once home, have gotten there safely. I, also, use phone alarms for my medications. I find this especially useful in the evenings when I may have other activities going on or am tired. My phone can be useful for directions, typing notes regarding things that I want to accomplish both routine and nonroutine. List making has become paramount for me. For many without AE remembering what needs to be done daily, weekly, and monthly may be easy. For me making a list either on paper or on my phone and then checking off the items once they are done has been a great strategy. For many of us it can be easy to become frustrated or depressed when we acknowledge or need to deal with memory issues. It can be exhausting. Making lists and checking items off not only assures that things get done but it also gives us a sense of accomplishment and we can then see progress being made. For me, I feel more positive and successful in my rehabilitation.
When I was discharged from rehab to home, I had no schedule. I slept quite a bit, which is necessary for our recuperation and recovery. And many of us still need to sleep, nap and rest more than we previously did. But I was left with no structure or schedule. I had previously been very busy with work, family, and friends. I felt at a loss. I no longer had the daily structure I had loved and thrived on before. Trying to develop a new routine can be helpful. It provides structure and can help an individual by giving purpose. For those wanting to and able to return to work this provides a good transition strategy between recovery and returning to work. Simply giving yourself a daily timetable of things to get accomplished can be a mental boost. Of course, at times we need to recognize and pay attention to our brains and bodies and know the daily routines may need to change due to treatments, etc.
Another issue I have realized is that after acquired brain injury, rest is important. It is as important as working on the issues or deficits that remain difficult for us. Most of us need additional rest. At the end of a day, I will find that if I lay down on the couch watching TV, I will fall asleep. If I get up early, I may need a nap during the day. I may need breaks if I am working on something that is cognitively challenging. Giving myself the time to rest, will allow me to be more successful in the things that I am working on.
Exercise can also help in recovery. But it needs to be added to one’s schedule carefully and as tolerated. Exercise can be scheduled into the day at a time that will work with other planned activities. It may take time to come up with a daily routine and individuals with acquired brain injury may need help in initially making a schedule. But developing daily routines for those of us with AE can help our recovery both mentally and physically.
Many of us diagnosed with AE are not able to drive a car or any vehicle for many reasons but the main one being we have had seizures. In many countries we must prove we are seizure free for a certain period of time before our driver’s license can be reinstated or we may need to take a special type of drivers test or class to be able to drive. In my case, I took a special driver’s test with the DMV (Department of Motor Vehicles). The instructor was trained to work with individuals with disabilities and taught me a lot about safe driving. Although I did not pass the driving test the first time, I did the second time, by utilizing what he taught me. I am probably a safer driver now than I was before AE. One of the things the instructor taught me included waiting a bit once the light turns green in case someone is running the red light. This simple act would allow me to avoid getting hit by a car going through the light. I now leave more space between my car and the car in front of me. If there is a reason the car in front of me stops or is stuck in traffic, leaving additional space allows me a way to move into the next lane. I am cautious about my speed and leave additional time to get to where I am going. Prior to AE I used landmarks such as buildings to help when going someplace. Due to my memory issues and the fact that places change, landmarks are moved, etc., I now utilize my phone’s navigation apps versus trying to remember directions. And I check directions prior to leaving home so I am more confident in how to get to a location. Being able to drive once again and utilizing different direction strategies has allowed me some independence and given me confidence in what I can accomplish.
Having a new disability can be difficult to accept. I am not the same person I was before AE. I have seen a psychologist since I was discharged home. I have struggled with grieving the loss of the old me and accepting who I am today. With time and work I can say I have made progress; I now have much more appreciation for other people, I am not in such a hurry that I do not see what may be going on with others around me. I realize that some of my relationships where those of convenience, and I know how much it can mean to people to take a small amount of time to acknowledge them and spend some time with them. I can say that working with a professional around the issues of grief and adaptation can be helpful. I will say recovery after autoimmune encephalitis is a marathon not a sprint. Additional research about the stages of recovery after a diagnosis of autoimmune encephalitis is needed to help provide the services that can help both the individual and the family.
Utilizing some of the strategies I came up with has helped ensure progress in my recovery. It has helped boost my moral. Developing visual cues, trying to schedule my day, exercising when I can, getting adequate rest, learning new driving strategies, and seeing a psychologist have been extremely useful in allowing me to become the new me!
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