“You have to Re-boot your brain” – an Autoimmune Encephalitis patient’s story of Recovery and Rehabilitation
It was in March 2016 that my husband Jim and I found ourselves waiting in Dr. Andrew McKeon’s office at the Mayo Clinic in Rochester, Minnesota. We were both nervous and exhausted. It was the end of a five-day marathon of back to back appointments for every scan, lab and test known to man it seemed like, to determine what was currently occurring with my autoimmune encephalitis. We were a long way from our Beaverton, Oregon home and three years had elapsed since my sudden and dramatic onset of the disease. The journey had forever altered our lives and we were traumatically scarred by the experience. Psychosis NOS was my first differential diagnosis and I had nearly been legally committed. I then received a diagnosis of Acquired Brain Injury of unknown origin. Next, I received a diagnosis of probable viral encephalitis with ABI as I seemed to be improving given psychosis was no longer present. When I relapsed and was on Neurologist #2 and #3 (colleagues in the same clinic), I was told that I either had something called anti-NMDAr encephalitis or Hashimoto’s encephalitis. But, I was not cured after IV Solumedrol and my NMDAr titers were low positive in blood when tested for the first time 16 months after onset, so it was determined that I was again a psychiatric patient. Neurologist #4 diagnosed me with what he had termed ‘a classic case of autoimmune encephalitis’ within 3 days of being told I was a psych patient by dear Neuros #2 and #3. This is when my treatment plan became aggressive. Fast forward a year and a half to Jim and I reflecting on the horrors of the last three years waiting for Dr. McKeon to enter the room and review his findings with us. I sat, watching the second hand of the wall clock give precision jerks forward to second-marker after second-marker on its face. Tick – Tick – Tick. The door opened and in walked Dr. McKeon. Jim grabbed my hand.
Did I just hear that? My vision blurred instantly. I wasn’t sure but Dr. McKeon was smiling so I MUST have heard that! “You are in recovery Tabitha.” As if one, Jim and I began to sob. Jerking sobs that wracked our bodies. Sobs of pent up fear. Sobs that release the soul from being chained to a nightmare. Cleansing sobs. Sobs that went from fear to release to joy. Words I never thought I would hear. I was in recovery.
Dr. McKeon explained that he felt my best chance for a successful recovery was to go through an intense rehabilitation program Mayo Rochester had developed for patients in recovery from autoimmune encephalitis. He told us he had called all over the country to try to locate a rehabilitation program that addressed all the issues an AE patient needs but had yet to locate one. He understood this was a sacrifice given we lived out of state but hoped that it would be something we could arrange. I returned to Mayo four months later determined to take advantage of every aspect of the 40 hours of intense rehab they were going to put me through.
Being in ‘recovery’ isn’t what you might image. When people heard, “She is in recovery”, they thought that I was ok and back to how I was before the disease. Not so. Luckily, I didn’t have any permanent brain damage, I had brain injury. I had to learn to walk, talk without jerking (never mind my issues with word finding or forgetting what I was saying), improve my focus through various ‘cross attention span’ exercises, balance in a stand or when moving/walking, turning, memory issues. Well, let’s throw everything in there to simplify it. I had to re-learn and re-train my brain so the neurons would communicate with each other again! I was in recovery which seemed like a different kind of challenge than the one I had just completed. It felt like I had scrambled and scraped to the top of this insurmountable mountain only to find that there was another mountain range to conquer that had been hidden from my view. I saw that this was going to be hard. I also KNEW that it would be a lot easier than what I had just gone through. So, in that sense, this was the best part of the journey. Who cared how long it took me to get there. I didn’t care one wit. I would get there when I got there and, on the way, I would get more and more of my function back. If I can give anyone any advice, it would be to not limit your expectations by setting time goals of when you will achieve success. Throw that restriction out the window. It will relieve you of stress and stress restricts recovery.
I have a love-hate relationship with rehabilitation. I love I am there and I hate that my deficits are very ‘in my face’. Learning about my injury was a huge eye opener for me. Understanding why and how I began using parts of my brain that were not injured to support my injury. How those behaviors had to be recognized and terminated and how I needed to begin to 1. Force myself not to use the tricks I had incorporated and 2. Be reminded of the correct way to do something.
A great example of this was learning to walk again. I was told that my brain knew how to walk because it had walked for 55 years until I got sick. Remembering how to walk was the trick. I had gone from scooter to walker by the time I entered rehab at Mayo. I used a cane but it was difficult because of my balance issues. Yet, I could do it. I had to learn to find my balance in a stand. Walk heel-toe, not flat footed like Frankenstein. No more tracing the walls to help me find my balance. I needed to depend again on my vision not my proprioceptive system. I thought to myself, who ever knew of all the things we do and have mastered without a thought when we walk? My PT would call out, “Find your balance. Lean slightly forward. Look straight ahead. Swing your arms. Heel-toe, Heel-toe”. You have GOT to be kidding me! I am supposed to remember all that? Practice, practice, practice. Amazingly, it came back. I watched people walk. I giggled that they were doing it right. I copied people ahead of me walking around Mayo and the adjoining grounds. Jim carried my cane, just in case. I never used it again! Can you believe that? I will confess that I LOVE grocery carts to this day a year and a half into my recovery. Lord I love grocery carts! It’s like an incognito walker that saves my energy and I secretly treat myself to a grocery cart when I enter a store that provides them. (That’s my secret so keep it to yourself).
I jokingly called my week at Mayo Rehab, “Re-booting my brain Boot Camp” because my therapist kept telling me that that was what I needed to do: Re-boot my brain. I was put through numerous left-right brain activities, cross attention span activities, there were Wii games and card games while standing on a bosu balance ball (a piece of equipment I also had a love-hate relationship with) and countless other challenges that drained my brain robbing me of all my spoons! Naps, by the way are a necessity to re-boot your brain. During my first year of rehabilitation I took long naps ranging two to three hours. I still nap daily to give my brain a rest from all the challenges I force upon it each day usually sleeping one hour. Again, I sleep until I wake up and never set a timer. What I need is what I give myself.
In order to take my life back and be motivated, I was asked what I missed doing the most that my AE/brain injury had robbed me of. That was easy to answer, I just didn’t believe it was attainable. I had been interviewed on day one about this topic and had not realized until well into my ‘re-boot my brain boot camp’ that my therapists had been focusing on exercises and challenges that would allow me to reach these goals.I missed cooking. I love to cook and I was good at it. Boy I missed that. I wanted to walk my two dogs, a huge German Shephard and a lab mix. That was a gigantic goal because they throw my balance off. My third biggie was driving again.When I started working on these goals I needed to be verbally prompted through making brownies from a box mix. I would forget to turn the oven on or off, I would get out the wrong utensils, I would lose my place in the directions and have to sit down and re-read and re-read to find my place and remember what I was supposed to do. Let’s just say I needed one on one assistance, shall we? The point is, I did it! Today I still cook with my aide but the support she lends is 90% personal cooking opinion and 10% direction/assistance. Where a recipe reports a dish takes 45 minutes of prep time, it may take me 3 hours because of my memory issues but who cares? Greek Spanakopita pie, lasagna, soups and stews, crepes and casseroles of all types are made in my kitchen on Wednesday’s rehab cooking day. I love Wednesdays! I search for a new recipe on Friday that will challenge me and impress my family. I shop on Monday which involves making a marketing list referring to the recipe I have chosen and cook all day on Wednesday. All of which uses many of the skills I am working on improving while doing something that gives me great joy and satisfaction. I walk the dogs three miles a day Monday thru Friday which addresses the cardio exercise I need that is good for my brain function and meets my goal. Yes, I can walk both dogs at the same time. I do usually go with my aide who walks one because the park can be a navigational challenge of ducks, geese and squirrels that my ladies both tend to want to dash after. I do still miss processing everything that is in my environment while focusing on walking the dogs so hazards can be missed. Yet, I am improving there also and see/register the biker or runner coming where I didn’t before. Literally I did not register things that were there as if my brain didn’t process everything that was in my field of vision. It is for this reason and other skills such as needed reflexes to respond quickly, cause and effect issues and other problems that prevent me from being able to drive. Actually, I haven’t driven in 5 years and I have learned to adapt to that too. Everything in its good time.
I am a work in progress. I am able to do things I never imagined I would be able to do again. I have fits and starts and blips and road bumps. Like an engine that has sat idle, I may sputter and back fire as I begin chugging, lurching and moving forward.I am not who I used to be before autoimmune encephalitis. I am a ‘revised edition’ of Tabitha. I’ve been edited and have a prologue I didn’t have before the Spring of 2013. The soul of who I am is the same. I put to you that because of my experience, a soul metamorphosis has occurred in how I regard life, my life, the gift of life. I now know what the original version of Tabitha took for granted. Life is to be cherished. There is nothing more important than loving. Weave simple acts of kindness into the fabric of each day.
International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.