September

I was entered into the California Encephalitis Project by the neurologists at Stanford. Encephalitis is inflammation of the brain. When my immune system attacked my brain, it caused inflammation. So I had encephalitis in addition to the brain lesions. Apparently, encephalitis is a dangerous condition, you can die. Dr. Handsome said they were sending in some spinal fluid and two Q-Tips needed to be shoved way up my nose to get some “viral holding media.” I tried to do it myself, but I guess I didn’t get far enough up there, so Dr. Handsome had to do it. My eyes watered. The following is taken from the California Encephalitis Project website (www.ceip.us/encephalitis.htm):
Project Background
Encephalitis is a devastating neurologic condition with significant morbidity and mortality. Over 100 different infectious agents are associated with encephalitis, yet no satisfactory algorithm for testing exists. Few studies have characterized the spectrum of the disease and little is known about risk factors, long-term prognostic indicators and optimal clinical management.
Objectives of the California Encephalitis Project
The California Encephalitis Project (CEP) was initiated by the California Department of Health Services’ Viral & Rickettsial Disease Laboratory (VRDL) in collaboration with the Centers for Disease Control and Prevention (CDC) and Emerging Infections Program (EIP) to study encephalitis in California. The purpose of the project is to better understand human encephalitis, including causative agents, disease trends, risk factors, and clinical features.
Case Definition
Case patients must be hospitalized with encephalopathy (depressed or altered level of consciousness>=24 hours, lethargy, change in personality), or ataxia, AND have 1 or more of the following: fever (T>=38C), seizure(s), focal neurologic findings, CSF pleocytosis, abnormal EEG or neuroimaging study.
Coroner’s cases
Send the following tissue samples fresh-frozen: brain (cross-sections of hippocampus, right & left cerebral & cerebellear cortexes & gray matter of brain stem), liver & lung.
At least I wasn’t a fresh-frozen coroner’s case.
The IVIg seemed to help a little. I noticed two improvements. I had enough coordination to sit up and scoot my butt back in bed and I my handwriting improved slightly. It was almost legible, to me anyway. An occupational therapist had come to my bedside and demonstrated some exercises I should practice. These included turning the pages of a magazine and drawing squares, circles and triangles. I was to turn the People Magazine pages with my index finger one page at a time. I did this and I filled pages of shapes resembling squares, circles and triangles.
After five days of IVIg the doctors hadn’t seen enough improvement in my symptoms. Still, I could barely walk, had slurred speech and my coordination was so bad in my hands and arms that anything I touched was a disaster. However, I still had plenty of strength, so when I touched something or picked it up, it was crushed, knocked over, broken, dropped, smashed or spilled.
I think the doctors were expecting more rapid results because other people with A.D.E.M. generally recover quickly (in days to weeks), but they also decline more quickly (hours to weeks) than I did (four months before beaming into the Mother Ship). The doctors decided to give me a second treatment – Solumedrol. I was to be moved to C1, the rehab unit, where I would receive the treatment while I was rehabilitated. Could I be rehabilitated?
I was told that the neuroradiologist detected the lesions on the MRI I had way back in June that we brought with us from Montana. They were hard to see, but knowing what they knew now, they were there. All that time the lesions were growing. Four months cultivating brain lesions. Good work, Neen. I grew ‘em good.

C1

C1 is an acute rehab unit. Acute rehab is for people who need rehab for a short time (not ongoing). Many people in C1 had injuries or surgeries; some had brain tumors or strokes. Rehab is for learning how to take care of yourself when medical problems are inhibiting. In C1, taking care of daily needs was a full time job for most people, including myself. Daily activities take a long time when your body doesn’t work right. In addition to learning to care of yourself the best you can, a patient, depending on need, meets with physical, occupational and speech therapists throughout the day. I met with all three and also a recreational therapist.
When I first arrived in C1, Ryan welcomed me, told me what I was supposed to do and filled out the sign above my hospital bed:
Name: Nina
Caution: Ataxia
FWW (front wheel walker) – this means I can’t walk without falling. I noticed the FALL PRECAUTIONS sticker outside my door.
In rehab, they gave me a wheelchair to use. It was a very maneuverable chair that fit me just right. I loved it. I had freedom from my hospital bed. I was not allowed to transfer from the bed to the wheelchair or from the wheelchair to the toilet without supervision, but once in that chair I could go anywhere in the rehab unit. C1 wasn’t that big, but it was bigger than my hospital bed. Since the strength in my arms was uneven and would cause me to always turn left, I preferred to use my feet to get around in my chair. I could go faster this way. I liked to hang out around the nurse’s station or get stuff out of the storeroom between rehab sessions.
I liked talking to the other patients in C1. It probably wasn’t appropriate, but I asked everyone what was wrong with them and then told them what was wrong with me. We chatted, discussing our illnesses, where we came from, compared notes on medications. Most of them were older and seemed more tired than I was. They moved through C1 slowly creating wheelchair traffic jams in the doorways and hallways. If I couldn’t get around them I put my feet on the back of their chair and pushed them to their room in their chair. I could get a prehistoric person to their room at least three times quicker than they could. My services were appreciated.
Hipless Herb had been in C1 for a month before I got there. He went into the hospital for a hip replacement and they took out the bad hip. When they got in there, they found an infection so they couldn’t put in the new hip. So Herb was getting antibiotics in C1, waiting for the infection to clear so he could get his hip and go home. He had to wear a big brace, his external hip. He was really depressed. Another lady had a brain tumor, and she had been taking steroids for a long time. She had a very round shape to her face. I learned that the “moon face” was characteristic of prolonged steroid treatment. Little did I know, I would have a moon face too.
Mom, Dad and I anxiously awaited the C1 Labor Day Barbecue. What kind of hospital throws a party for the patients? We thought Stanford was a great place. I was very excited about the event. My occupational therapy on that day was to help set up the party. YAY! I taped up some decorations and arranged some cookies from my wheelchair. Here’s what we had: barbecued hamburgers and hot dogs, potato salad, couscous salad, fruit, brownies, cookies, and mini muffins. YUM! We sat outside with Herb and chatted.
Herb asked, “Do you ever find yourself in despair?” Immediately I burst into tears; it had been a rough few days. I’ll tell you why later.
I had more energy in C1 than I had had in months. I had lots of energy and little control of it. I ran all around the unit in my wheelchair crashing into everything and everybody. “WHOOPS!” I said this often. I said this each time I crashed into something, so often that the husband of one of my roommates started impersonating me. “WHOOPS, WHOOPS.” I was a maniac, and I loved it. Being a maniac is really fun. I had lost control of my body, and it made being a maniac even more fun.
Each day, I spent an hour with Ryan, the physical therapist. He was helping me to walk again. I began each day on the stationary recumbent bike. He said this would help keep my legs in line – if I could keep my feet on the pedals, my legs and body would do what they were supposed to. There were straps to hold my feet in place. Next, he had me do stabilization exercises on the mat. On hands and knees, I would lift my legs alternately behind me. Often I fell because I couldn’t balance on three limbs. When my stabilization improved, Ryan tested it by having me kneel and pushing me gently to see how I recovered. I was usually able to compensate and recover to an upright position. Sometimes, I overcompensated and fell in the opposite direction I was pushed.
After warming up, Ryan took me for a walk, or at least what they consider walking in C1. In the beginning, he had to use an ace bandage to tape my left foot at a right angle to my leg so it wouldn’t drag on the floor. The bandage helped. Up until the time I was admitted to the hospital, I hadn’t really noticed that one side was different than the other. Dad and I had been stumbling around in oblivion, but we didn’t know any better. I could put the right foot out to take a step, but the left one needed the bandage in order to get it in front of me so I could put weight on it. As Ryan and I used the walker he supported some of my weight and held me so I wouldn’t fall. We walked short distances together, but they took a long time. I had to think about each step, especially on the left side. Ryan gave me tips: “Heel touches the ground first.” “Slow.” I had to give my body commands to do the things I had previously taken for granted.
When I walked with the walker, Ryan kept telling me to slow down, but I couldn’t. Once I started walking my feet would speed up and once my legs got into a rhythm they couldn’t slow down. They kept getting faster and faster and I would get more out of control. Ryan would tell me to stop and reset. It took a few seconds to get things stopped. I would reset and start again, and the process would start over.
Ryan said that the weakness I was experiencing was coming from my brain, not my muscles. My brain was working overtime to send messages to my body. The tiredness of my brain affected the tiredness of my body. It’s all a part of the same unit. It is hard to understand how weakness comes from the brain, but the brain controls everything including strength.
After about a week in C1 my foot stopped dragging and Ryan didn’t have to tape it up anymore. My balance was slightly better. I was improving. This was due to the IVIg, rehab, my body’s natural healing, or maybe a combination.
Julie was my occupational therapist. The occupational therapist helps with the chores of living your daily life: dressing, going to the bathroom, bathing, grooming, cooking, eating. Since I pretty much took care of myself, we focused on using my arms and standing. We usually started our hour together with ten minutes on the Sarasota Cycle, the arm bike. Sometimes I got to the gym early and did an extra ten minutes for fun. Some days, as part of my occupational therapy, Julie let me take a shower. There was a bench to sit on in there. I transferred from the wheelchair to the bench, then back to the wheelchair. After I had taken a few showers with Julie supervising, she felt confident that it would be okay if Dad was my supervisor. Now I could take a shower more often. Afterwards, I would douse myself with the hospital baby powder. It felt good to clean up, when you are almost helpless, the small things are important.
Julie said that with all demylenating diseases the object is to “rebuild the pathways” between the brain and the body. The brain was talking, but the body wasn’t listening. The pathways get rebuilt by having your brain make your body work. I had to do the hard things in order to recreate those pathways. Maybe Dr. Yesno was right when he said that the brain has an incredible power to heal itself. Julie taped a big piece of paper on the wall and put some crayons on the table behind me. I had to turn around, pick up a crayon and draw on the paper, then turn around and put the crayon back and get another one. The small angular movements required of the feet for turning were difficult, my hands held the wall and table as I turned. If I dropped a crayon I had to pick it up. Sounds easy enough. Not so much.

Remote Control

Sometimes I think about the Mars rovers, Spirit and Opportunity. Are they still going? Before the rovers launched, the scientists predicted that Spirit and Opportunity would only function for several months because dust would build up on the solar panels and halt the production of energy for roving. But dust devils came through periodically and whisked the panels clean. The rovers continued to work long past those months.
I imagine the robot rovers out there moving slowly and analyzing the rocky surface of Mars. What kind of sound do the wheels make on Martian soil and rocks? What are they doing right now?
I thought of myself as a robot rover operating by remote control, only I wasn’t as refined and elegant a machine. I was more like a Viking robot with flashing lights and honking horns. A Viking clown robot rover.
My brain is the remote controller of my rover, but with brain lesions the messages sent to my body weren’t transmitted well. The demylenation removed the insulation on the nerves in my brain so when my brain sent a message to my body, the message wasn’t well received. It was like the message had to travel through a thick asteroid belt between Earth and Mars. My brain grew impatient. The messages were sent over and over. With all of the dead ends in my brain, the messages came through in a choppy manner and with pauses between. When I walked, it was like being on a boat in a storm. It was like being in an avalanche. It was like being in a fast-action car chase. It was like falling out of a raft in the rapids. There was confusion between my body and my brain. My body couldn’t keep up with my brain or my brain couldn’t keep up with my body. The messages didn’t get through fast enough. “GO! GODDAMMIT, GO!
I saw a NASA scientist on TV. He said that if Spirit and Opportunity tilt too far to one side they stop to correct themselves. That’s what I needed to do.