Friday, May 1, 2009


In order to keep this story in chronological order I am back-dating the posts. So the newest posts are at the bottom and have older dates.

Sunday, April 26, 2009




The first thing that seemed out of the ordinary was slow hands. Working at my computer in Miles City, Montana, I was preparing for a busy season of field work. As I tried to type, my hands moved slowly. I just couldn’t get my fingers to move. It was like a dream where you are running away but your legs are heavy and slow and you move like a slug. I was frustrated that I wasn’t able to work efficiently with so much to do. I didn’t think a lot of it, but when I told my Mom on the phone that night, she was concerned. I still didn’t think much of it. Mom and Dad live in Auburn, California, about 1,400 miles away. At this time she especially didn’t like to be so far apart.
About a week earlier I had the flu, or at least what I thought was the flu. But this was no ordinary flu. I was so extremely tired, it took everything I had to go to the kitchen and fix myself a bowl of cereal. I did this once a day. I lost about 15 pounds that week. For two weeks before that, I had that feeling where you know you have a bug that is going to turn into something, slightly achy and tired, just not right.
I slept for 10 days. Besides being exhausted, the only other problem I had was chills and sweating. I didn’t have a thermometer, but I figured I had a fever. I was awake for a few hours per day. During those hours I lay in bed and watched a spider move around on the ceiling. I kept the phone by my bed. Mom grew more apprehensive each day.
That week I went to the walk-in clinic three times. I had never been to an emergency room or a walk-in clinic before. I was a very healthy girl, a beast, a Viking, things like the flu didn’t bother me much, and they never lasted more than a few days. I went to the clinic because I was so extremely tired and it wasn’t going away. My body was heavy, I was weak. This wasn’t a feeling I was familiar with.
The first time I went in, the doctor did some blood tests. Everything was within normal limits. He said it was probably the flu and sent me home. The second time I went was mostly for a doctor’s note to take the rest of the week off from work.
“What’s wrong?”
“I’m tired, but not in an ordinary way.”
I should have told him that I had to lie on the waiting room floor. He was a pediatrician and seemed to be in a hurry. He said it was probably the flu and he wrote me a note for work. I felt like an idiot. Idiot!
I returned to work the following Monday although I was still extremely exhausted. I was painfully exhausted. But there was so much work to be done. It was early May, the beginning of the field season, and I didn’t want to get behind schedule because things are supposed to be done at the same time each year. It was very hard to work; the exhaustion was overwhelming. I dragged myself around every second I was there. All I could think about was lying down and resting, sleeping, I needed sleep. I needed more sleep. The hours between workdays were all sleep. Eight hours of work, sixteen hours of sleep, not enough sleep. I couldn’t catch up, I just got tireder and tireder with each day of work.
I worked outside, and I had to lie down on the ground every twenty minutes or so and take a rest to make it through the day. Normally I am a very efficient worker. I can out-work most people or at least keep up with the best. Now I was last. I was ashamed. I went back to the clinic for the third time that week. More blood tests, all normal. IDIOT! Get over it.
I had to get through two more weeks of work before the annual family vacation in Hawaii. Plenty of time to recover from the flu and enjoy the vacation. I took a couple of half days off work to go home and sleep. In between the two weeks of working, I slept the whole weekend. Dead to the world. I couldn’t get rested. Mom’s uneasiness grew. Sleep. Sleeping. Slept.
On Friday, May the 19th, I flew from Miles City to Sacramento, California. I appeared fine and normal to Dad when we met at the airport. We drove home. Mom was glad to see that I looked well, “and so thin!” I was happy to be home, excited about Hawaii, and glad that I had a week to relax and rest before things really got going at work.

The Blood-Brain Barrier

The blood-brain barrier is a membrane separating the brain and spinal cord from the rest of the body. This barrier was discovered when someone observed that when the body was injected with a stain, all of the organs would stain except the brain. And then when dye was injected directly into the spine, the spine and the brain stained, but most of the other organs remained stain free. The barrier surrounding these vital organs was protected from the rest of the body and not crossed by the dye.
In most areas of our bodies, our cells, forming the tissues that hold us together, are connected loosely. This loose connection allows nutrients and chemicals and waste products to pass through blood stream and nourish and cleanse our organs and tissues.
However, the blood-brain barrier does not have loosely connected cells. These cells are cinched tightly together to protect the delicate nerves of the brain and spinal cord from the harsh and dynamic climate of our body. The brain must have a stable, unchanging environment in order to conduct our symphony. The blood-brain barrier provides just that. Blood carrying oxygen and nutrients to nourish the brain are allowed to pass, but all the other garbage is supposed to stay out of that biosphere.
So the cells hold together as tight as they can, like when you play Red Rover and you hold hands so tightly that the line is impossible to break through. Sometimes the right person is very strong or finds a weak link in the chain and pass through like a key in a lock. A virus crossed my blood-brain barrier. This is not supposed to happen, but evolution is not perfect.

Saturday, April 25, 2009


The day after I arrived home, my Mom, Dad, my two younger brothers (James (Jamie) and Peter), and Jamie’s wife Dana and I flew together from Sacramento to Maui. We would meet my older sister Monica (Mimi) and her family, and my older brother, Mike, and his girlfriend there. HAWAII! This was not one of our usual family vacations, this one was very special. Each year we got together and camped or rented a house. We never flew anywhere. It was always somewhere that could be driven to in a day. All 13 of us got on airplanes. We had four condos and four rented cars. I slept on the plane ride over, but I didn’t know that would be sleeping through most of the week.
The first day there, we checked in and everyone played on the beach. I sat on the beach and rested and watched my family play because I was still tired. I was saving my energy for all the things Pete and I had planned months before. Mom and Dad went grocery shopping.
The next morning, I was jerked awake by my shoulder, and I thought my arm rose forcefully up into the air. I was so tired that I wasn’t sure what was happening with my arm. What happened? I didn’t quite know. I quickly went back to sleep. It happened again. I noticed it a little more this time. My jerking left arm woke me up several more times that morning. Weird.
I was too tired to do anything. I stayed in bed and slept while my siblings snorkeled, hiked, and completed the list that Pete and I had made. I was glad they went without me, I didn’t want them to worry and I wanted them to enjoy Hawaii. But they worried and snorkeled at the same time. While I slept, Mom and Dad stayed with me in the condo and got nervous. Occasionally they would go to the beach just outside our condo for a walk or a little snorkeling. Sleep. Sleeping. Slept.
The morning following the jerking arm morning, I got up to visit with my family before they scattered over Maui. When I got up, I was unstable on my feet; my balance was off. My speech was also not quite right. I had a mild slur, like I was drunk. My siblings watched me nervously then went about their vacation, except Mimi. She stayed back that day. I took a shower and almost passed out for some reason.
Mimi’s father-in-law is a general practitioner in Los Angeles. He was consulted. The events of the last few weeks were explained. He said that it sounded like post-viral cerebellitis. It seemed I had had the flu and cerebellitis matched my symptoms well. This is an inflammation of the cerebellum, the part of the brain responsible for motor coordination. He told Mom and Dad to take me to the emergency room.
The next morning we went to Maui Memorial Hospital. We waited about an hour before getting a bed in the emergency department. The doctor examined me and ordered a lot of tests: blood, EKG, CT scan of my brain, MRI of my head and a chest X-ray. At this point, I wasn’t very familiar with these tests. In the MRI machine, they put on headphones with music because the machine makes a lot of noise. The technician asked what kind of music I’d like. “Hawaiian.”
The test results were all within normal limits. He couldn’t find anything wrong. I was healthy, but I acted drunk. He said to see a neurologist when I got home. We looked at the discharge papers as we left the hospital. Diagnosis: general weakness.
As everyone explored the island, I spent most of the rest of the vacation in bed, sleeping about 15 to 20 hours per day. Mom and Dad hovered around as I slept, their apprehension growing. When I was in Montana, I told them how tired I was and how much I was sleeping, but it was even stranger when they saw it in person. Mom says that I have a tendency to understate things, so when she was so far away she wasn’t really sure what was going on.
I wasn’t in the condo for the whole time. I ventured out briefly on several occasions. I went down to the beach one evening to toss the football with my little brothers. I tried to run over to catch a pass but just fell into the sand. We laughed at the sight of me, falling into the sand, lying in the sand. It was funny and concerning at the same time, but the beach was a good place to fall down. I also wanted to buy some souvenir gifts for friends in Montana. Mom and Dad took me into a gas station for this. I had to shop really fast because of my limited energy and I made quick decisions which I would normally linger over as a souvenir addict. I also had to sit on the gas station floor for a few minutes to regain energy to finish picking out junky souvenirs.
Each evening I woke up to the stories of the day, fancy fish, turtles, big waves, sunburns, trails, they did it all. Mom and Dad felt sorry for me. They took me for a drive along the coast to a spot where I could get out of the car and just steps away I could look down into the water and see little yellow fish swimming around. This was snorkeling for the very sleepy. Poor Mom and Dad.
With all of the cameras taken on the trip only one image of me exists (unless you count the MRI, CT scan and X-ray). The Polaroid was taken on the beach below our condo by a woman with a parrot on her shoulder and several leis on her neck. The cost was ten dollars. She put the leis over our heads, handed over the parrot and froze our image. I got to hold the parrot. When I look at the picture now, it stops me. There are six faces there: three generations and one parrot. On the sandy beach with the sea in the background, billowing clouds, a few rocks in the surf, some shadows in the foreground, dreamy lighting and sunspots on the print, well-arranged bodies, festive outfits, bare feet, smiles.

Friday, April 24, 2009


On Saturday we flew home to California. I was due to fly back to Miles City on Monday. On Sunday, Mom called the hospital in Auburn to find out how to see a neurologist. They said to go in to the emergency room and ask the doctor to get the on-call neurologist. Turns out, there was no on-call neurologist. It took us most of the day to find this out. The ER doctor found nothing wrong. He told us to see a neurologist.
The next morning, Mom came to my room while I was still in bed. She had called the ER at the University of California, Davis in Sacramento to find out if they had an on-call neurologist. They did.
Mom and Dad did not want me to go back to Miles City yet. I wanted to do what would make them feel most comfortable, so I agreed to stay. Mom called the airline to change my flight. They said that since it was due to illness, I had one year to use the ticket. “Good,” I thought, “I’ll just go home and get back to work in a few days.”
We arrived at the UC Davis emergency room around 11:00 am. We signed in and started to wait. People with terrible problems came in after me and were accepted before me. “He should go before me,” I said, “she should go before me.” In an emergency room I was low priority. I had no pain, my vital signs were good, I could carry on a conversation and I appeared healthy. I just talked a little funny and I could fall over when walking. Mom confirmed with triage that there was an on-call neurologist that would be called when I was seen. We waited.
Around 2:00 pm Mimi just walked in the door. It was very surprising since she lived about two hours away. We had been on the phone with her a lot, and she was very concerned about her little sister. Her appearance in the hospital was a bit alarming to me because it meant that something might really be wrong. She thought that we were not demanding enough with the health care providers. She gave Mom a pep talk, telling her what to say to the doctors when we were seen. Mimi went to the hospital cafeteria to get us some food. We couldn’t leave because we expected to hear my name called any minute. Mimi had to leave around 5:00 PM to get home to her three kids.
Mom, Dad and I waited and chatted with people in pain. We waited. My name was called at 1:00 am, 14 hours after we signed in.
The resident ER doctor came in and did a neurological exam. I was showing the signs of having a problem – failing the clinical neurological tests (or passing them depending on your perspective). Then the attending doctor came in. My Mom told her that we wanted to see the on-call neurologist. The doctor said we could only see the neurologist if I was having a stroke, at that moment. Mom started to boil. Mom was furious. The doctor kicked my parents out of the exam room. She said that Mom was interfering with her talking to the patient. That’s when Mom wanted to kill her. “I can call security,” the doctor said after Mom was gone.
She examined me a bit. I told her my story. The flu. The fatigue. How I was supposed to see a neurologist. She talked about doing a lumbar puncture. She decided not to do one because she didn’t think I needed one and there are risks associated with them. She didn’t want to do anything “unnecessary,” even though she did lumbar punctures “all the time.”
The neurologist was not called. No tests were done. I was in the exam room for about 15 minutes, after waiting 14 hours. She said to see a neurologist. Douche bag!
The next day, Mom called some neurologists in the area. The soonest appointment available was over a month away. She and Dad discussed this. I wanted to go home and get back to work. Mom made an appointment with a neurologist in Billings, Montana in two days.
Billings is about two hours away from my home in Miles City.
Dad and I left the next morning. We had just enough time to make it to the appointment. And I was going home. Sigh. I later learned that Steven, Mimi’s husband, told my Mom that sending me back to Montana was “the stupidest thing you could do.” He was probably right.
I was surprised about how much attention I was getting. People were arguing over my health. I felt fine; I just couldn’t walk or talk well and I was tired. I didn’t want to be a burden. I needed to get back to work. There was so much to be done.

Thursday, April 23, 2009



Dad and I left for Montana on the last day of May 2006. Mom didn’t come because she had to work, but Dad had retired from the Post Office about six months earlier. He was a mailman for 38 years. About half way there, we stayed overnight in American Falls, Idaho. He and I had dinner at Pizza Hut that night. I spilled sunflower seeds all over the floor at the salad bar because I couldn’t hold the spoon level. And when I took a shower in the hotel, he was worried because he thought I might fall. I refused to take a bath in a hotel bathtub. Gross. I didn’t fall, but Dad had a cause for concern.
We were in Billings on time the next day for our 4:00 appointment. Dr. Coneman did tests for neurological symptoms. I would eventually become very familiar with these. The tests provide information to the doctors about the state of the nervous system. They are simple tests that require patience from the doctor and cooperation from the patient.

The Neurology Exam

The doctor tests for cognition. He determines if you are alert, he asks questions about time and place to see if you are oriented. If a family member is around, they may be asked if there is any change in your personality. As you speak to the doctor, they are secretly listening to the character of your speech and observing your behavior. Is your speech smooth? Are you making sense? Are you acting strangely? How do they know if you weren’t strange to start with?
There are eye tests. They shine a light in your eye and then the other one. They ask that you watch their finger with your eyes only as they move it around, don’t move your head, just your eyes. They check your peripheral vision: how many fingers am I holding up? You are not to look directly at the fingers.
They look for symmetry on your face, do both sides look about the same? Smile big. They ask you to move your tongue and lips. They ask if there have been any changes in your smell, taste or hearing. They touch the left and right sides of your face and ask if it feels the same on both sides. They make a noise by each ear and ask if it sounds the same on both sides.
Strength is tested in your arms and legs. Push against me with your arm. Now pull. Push out with your leg, now pull in with your leg. Push down with your foot like a gas pedal. They prick around on your body to make sure you can feel everything.
They scrape the bottom of your foot with something sharp to see if your toes curl up or down. If you are older than two years, they are supposed to curl down. Mine went up. They test to see if you can feel vibration and temperature. They test reflexes in your knees, elbows, ankles and wrists. I was hyper-reflexive. Stand back if you touch my knees.
They ask you to touch their finger with your finger and then touch your nose. They move their finger to a new spot and you touch it again. Touch your nose. Move the finger, touch it, touch your nose. Repeat. Tap your fingers in a coordinated motion, smoothly. Faster. Now move your heel up and down the opposite shin, other side. Now let me see you walk.
Dr. Coneman did not do all of these tests. He asked me to walk heel-to-toe, like in a drunk test. I gave it a quick try. Impossible. He ordered blood tests for West Nile virus and Epstein-Barr virus. He also ordered an MRI scan of my brain and a lumbar puncture (I prefer the term ‘spinal tap’ to lumbar puncture). He said it looked like an “inflammatory process,” and we needed to wait it out. It would pass.
In his notes from that day, Dr. Coneman wrote:
“Nina is a 32 year old woman who has had a bout of the flu, suggesting an underlying viral process followed by elements of ataxia along with hyper-reflexia.” Ataxia is unsteady and clumsy movements in the limbs and trunk due to a lack of coordination. Think of it as not being able to taxi smoothly. Although my reflexes, especially in my knees, have always been a bit brisk, they were really crazy now.
“The patient is a healthy-appearing, well-nourished woman who has some slight speech slurring.”
“Well-nourished.” Gold! Pure Gold!
Dr. Coneman’s statement that the illness would pass stayed with me. I believed it would pass, I just had to pass through the illness, however long it took. I never doubted it. I don’t know why I believed this, I just did. Not believing was not an option.

Wednesday, April 22, 2009

Dr. Coneman

Dad and I stayed overnight in Billings, and the next morning we went in for the spinal tap that Coneman ordered. I was a little nervous remembering what the emergency doctor at UC Davis had said about risks associated with a spinal tap. She didn’t say what they were though. Hell, there are risks associated with everything, and we needed to find out what was wrong with me. The procedure was completed and as we left, I was casually told to lay flat for 24 hours to avoid the spinal headache.
I was told: “If you get the spinal headache, go to the emergency room. They will take some blood from your arm and patch it into where the fluid was taken from your back.”
Me: “How will I know if it is a regular headache or the spinal headache?”
Them: “You will know. It will be an experience.”
Dad and I drove the two hours back to Miles City. I laid the seat back so I was almost flat. It was good to be home. I went in the house and I lay down. Dad made dinner and we went to bed. In the middle of the night I got up to pee. On the way back to bed I started to black out, I stopped in my tracks. “DAD, I’m blacking out.” Dad hopped out of bed and put his hands under my arms. I passed out and he dragged me over to my bed (I’m no tiny girl, Dad and I weigh about 150 pounds apiece). I came back a few seconds after he got me onto bed. “Good thing I was here,” he said. “Good thing,” I said.
Our next appointment with Coneman was the following week. He told us the test results. The MRI of my brain seemed normal, blood tests were negative for Lyme disease and Epstein-Barr, but the T-count was 99.
The T-count is supposed to be close to zero, less than five is acceptable. The T-count measures lymphocyes (white blood cells acting as part of the immune system) in the cerebrospinal fluid (CSF) which insulates the brain and spinal cord. If there are a lot of lymphocytes, it means that your body has mounted an attack on an intruder. The high T-count in my CSF indicated an infection or the presence of a virus that my body was attacking somewhere in my spinal cord or BRAIN!
Coneman said the elevated T-count was indicative of an infection that was now gone. Again, he said I probably had an “inflammatory process.” “You just have to wait for it to run it’s course,” he said, “it will resolve on its own. You just have to wait.” There was an emphasis on waiting. I didn’t know what an “inflammatory process” was. Still don’t.
While discussing the MRI, Coneman mentioned the possibility of multiple sclerosis (MS). The MRI showed no lesions characteristic of MS, but diseases take on many forms and I could be in the early stage of the disease. This was upsetting news. We went home to wait out the “inflammatory process” and think about MS.
While we waited, I still expected to be back to work in a week or two. How long could this go on? I had so much to do. My boss told me everything was going fine, but every now and then he would call with a question. The nature of his questions proved it would be a lot easier if I was back at work. I just wanted to get back to work.
While we waited for the next appointment, I mostly laid on the futon on the porch when I wasn’t in bed. Dad fixed my meals, concerned friends visited, and I tried to get enough energy each day to stumble around outside for a few minutes.
Sometime in early June I woke up with a numb tongue. It wasn’t really numb, more like tingly. And just on the tip. Weird. Also, from time to time in June, as I was laying still on the futon, I could feel a very gentle sensation in my head. I can only describe it as a feeling of tiny flowers opening up inside my head. A very faint tickling sensation. On the phone, I said, “MOM! I CAN FEEL THE LESIONS FORMING!” MS was a real possibility. Scary.
Mom took a week off work and flew to Miles City to be with me and Dad and to cook for us. She was very upset. Mimi’s father-in-law prescribed her some Xanax to help her through these times. She was losing weight.
One night Mom cooked a turkey dinner party for my friends. My boss had killed it earlier that spring. Mom had a great time preparing the bird, and she has recounted the story many times. The frozen turkey was plucked and covered in fine hair. She didn’t want to spend the time pulling them all out, so she shaved the bird, with my razor that she got out of the shower. As she was preparing to stuff it, she found that the crop that hadn’t been removed. She was excited. “IT’S FULL OF WORMS, AND HUGE GRASSHOPPERS!” She pointed out how the grasshoppers had been perfectly preserved in the crop in the freezer, they looked brand new. “You can see all the little spines on their legs.”
Mom had to fly back to Auburn. Dad and I waited. At the next appointment with Coneman, I was examined and I told him about the numb tongue. He thought it was odd and attributed it to the inflammatory process, he said it would subside as the inflammatory process subsided. I just had to wait. This did not satisfy Dad.
Dad: “Could you do more tests? How long will we have to wait?”
Coneman: “Can’t you wait?”
When we got back to Miles City, Dad called Mom and told her about the “can’t you wait” comment. They decided that Coneman had taken things as far as he would, and they couldn’t wait. It was time to go back to California. Dad told me we would just go for a couple of weeks, and then we’d be back. I called my boss. I had plenty of sick leave built up for a couple of weeks. Dad packed me a light suitcase, and we left the next day.
We stayed the night in Burley, Idaho. I had a lot of trouble making it up the stairs to our room. Dad walked up behind me to make sure I didn’t fall backwards down the stairs. He held onto my belt. In the morning, we had breakfast at Dad’s Travel Plaza. Our breakfast booth had a roof over it like a covered wagon. As we drove, Mom searched for a neurologist in the area who could see us soon. She settled on one who could see us the following week. She chose him because he was on an MS board.

Tuesday, April 21, 2009



Mom chose Dr. Flobee in California because he wasn’t far from home in Auburn, and he was on an MS board. Since there was a possibility that I had MS, we wanted someone knowledgeable about this disease.
After our first visit to Flobee we thought he was quite thorough. He did the neurological exam and looked at all of the pictures on the MRI that we brought from Montana. He said that the MRI looked normal, and he seemed to agree with Coneman that I had an “inflammatory process.” He said I didn’t have MS. He had us schedule another spinal tap to see if the T-count was coming down and getting closer to normal. It was 35 down from 99 in Montana. Good. He said I had to wait, go home and wait. We went home and waited.
I slept through most of July. At night I slept 12 to15 hours. When I got up, I moved to the couch and spent the rest of the day there resting and napping. The couch became known as “Nina’s camp” because I spent so much time there and the area was covered with bits and piles of my stuff. I did very little in July, not much happened besides getting worse. But Mom got more worried, in addition to taking Xanex every day she kept a crying towel by her bed at night.


Through late July and early August, my symptoms were getting worse. I lay on the couch all day watching TV, napping and slowly knitting potholders.
While I slept, Mom and Dad were getting more nervous. Mom scheduled an appointment with Flobee. We told him I was getting worse. He said, “sometimes when you live with a disease from day to day, it just seems like you are getting worse but you aren’t.” He said I was on a “long convalescence,” I just needed to wait it out. Dad tried to tell him that I really was getting worse. Then Flobee started calling my Dad “sir” in a defensive manner. Rude. ASS!
We asked about the results of the last spinal tap. He informed us that the spinal fluid had been lost. SHIT! To appease our concern about our imagined worsening of symptoms, he ordered a cervical (neck) MRI, some blood-work, another spinal tap, and an evoked potentials test for MS.
Evoked potentials. They put a bunch of leads on your head and hook you up to a monitor. You are instructed to stare at a TV screen that has geometric shapes on it with subtle changes happening. You don’t do anything but stare at the screen for about half an hour. The machine watches for how your brain is responding to what it sees on the screen. If it responds in a certain way, you have MS. Flobee said I didn’t have MS.
Before we left Flobee’s office that day, we asked for a prescription for physical therapy. Flobee didn’t think I needed it. Dad was so mad that he didn’t say anything. We didn’t get the prescription even though Dad had to hold me up by my belt when I walked. I would certainly fall over without him.
I had the cervical MRI, and another spinal tap a few days later. During the wait between appointments, Mom and Dad had decided to ask Flobee for a referral to either UC San Francisco or Stanford. To be seen at a fancy hospital, you must have a doctor’s referral, you can’t just make an appointment. After the spinal tap, I asked Flobee to come out into the waiting room so Dad and I could ask a few more questions. Mom sat this appointment out because Flobee infuriated her. She couldn’t stand to be around him and she was afraid she might blow up at him. She knew that Dad would be able to keep his cool, and we needed that in order to get the referral. Again we asked for a prescription for physical therapy. He called Dad “sir” and said I didn’t need physical therapy, but he gave it to us since we wouldn’t go away. He was defensive. We also told him that we wanted a referral to Stanford (we chose Stanford because it is close to Mimi’s house in San Jose). He said he would fax the referral to Stanford. We looked at the diagnosis on the physical therapy referral: ataxia. Duh.
Here is the note that Mom wrote to Flobee, I scribbled a barely legible signature on the line:

Dear Dr. Flobee:

Several members of my family have encouraged me to have an evaluation at Stanford Medical Center, and I would also like to do this in the hope that it may provide a little more understanding of my condition. Would you please give me a referral to a doctor there. You may fax your referral to me at 916/ XXX-2997.

Thank you very much for doing this. I will see you at our next appointment on August 16.

Nina Lynch

The Manatee

The symptoms were worsening. This was my condition in August. It wasn’t only my condition, I shared it with my family, it was our condition. I was never left alone. The parentals checked in on me all the time, helped me move around, fixed meals, cleaned up after me, got me dressed, helped me bathe. I couldn’t do much for myself.
My balance was degenerating, and I could barely walk without Dad’s help. I could only walk a little without him if I held onto walls and furniture. Dad held me up by my belt whenever I walked. He held me up to balance me; he supported most of my weight. I had the strength to support myself, but no coordination. I would just tip over. He had to pull me up off the couch by my arms because I didn’t have the coordination to scoot myself to the edge and stand up. Before he pulled me up, we had to check and make sure my feet were under me and in a position that would support my weight.
Occasionally, when Dad was outside, I would try to crawl around the house. But by August, this became impossible. I didn’t even have the coordination for crawling. I tipped over on all fours. Mom brought home a walker that she found at a thrift store. I tried it out, but it was useless. The walker and I tipped over together.
Dad and I developed a system for going to the bathroom at night since I was no longer allowed to walk alone. I would call the house phone with my cell phone, let it ring one time and hang up. Dad would wake up and come downstairs (by this time they had moved me to their bedroom on the main floor so I wouldn't have to navigate the stairs) and help me to the bathroom. He didn’t leave the bathroom until I was balanced against the toilet with my calves and my hand on the towel rack. When I was finished, he walked me back to bed.
Poor Dad, my full-time caregiver. Sometimes I knocked him over. Once he was walking me in from the car, and I knocked him into the junipers. I didn’t only knock him into the junipers I landed on top of him. I took him down with me several times in August.
When Mom wasn’t at work she would help me undo my pants in the bathroom. The pants were hard because I had to lean against the wall to balance while using my hands to do the button, zipper and belt. The small, intricate things were hard. They were hard and took a long time. Moms help was appreciated. She also helped me get dressed and put on the shoes and socks. Getting the shoes on and tying them was becoming increasingly difficult.
Without her help dressing, I used the camping/tent method of dressing whereby you dress while laying down. With her help, I would sit on the bed and lift one leg for her to slide on the pants while balancing upright with the other leg on the floor, my butt and two hands on the bed. Sometimes I fell over anyway.
I fell down or crashed into things a lot. “Thrashing around” is how Dad described my walking. This didn’t bother me. “DON’T WORRY, I’M A VIKING,” I would tell Mom and Dad in my loud voice. “I’M A VIKING.” I was good at falling. I could crumble just right without getting hurt. Usually. Falling really isn’t bad at all for a 32 year old with strong bones. I think your brain speeds up during a fall. I would be falling and thinking, “shit, not again, this is just what I was trying to avoid.”
Once I fell down in the bathroom. I was pulling up the pants, so my feet were close together and I was unbalanced. I fell forward and couldn’t react quick enough to catch myself. I landed with my face on the bathroom counter. I cried, not because it hurt, but because my feelings were hurt. “What the hell is wrong with me?”
This lack of coordination, ataxia, was not only present in my limbs, I also had trunkal ataxia and ataxic speech. Trunkal ataxia is an inability to balance in a sitting position. I couldn’t sit up without support. I would fall off the couch or the toilet. I liked to trick Mom at the dinner table. I leaned to one side to pretend I was tipping over and about to fall out of the chair. She would gasp frantically and then we would laugh.
My speech was ataxic: slurred, loud and unmodulated. I had become hard to understand, and frequently had to repeat myself. I learned later from my speech pathologist what had caused the character of my voice to change. I was unable to coordinate the movements of my tongue and jaw, my vocal folds (muscles in the throat) and the back of my tongue were weak, and I couldn’t coordinate breathing with talking, I was frequently out of breath. I’d get a sentence out in one breath and then gasp for air at the end of it. My voice was loud and un-modulated because my diaphragm was weak and out of control. I blasted out my words. Mom said she liked my new voice.
I had something that is known as clonus in my feet. This happened when my feet were put in a certain position, sort of pointed down. When a foot was in the right position, it would tap repetitively and rapidly. I struggled a little to get it out of position and make it stop. Sometimes I let it go for a while because it was strange and unusual and I liked to watch it.
I wrecked stuff, pretty much whatever I touched. I didn’t have coordination in my arms and hands, but the strength was there. I couldn’t move slowly, my movements were fast with pauses between, like a dashed line ---------. I dropped stuff, crunched up stuff, flattened stuff, squeezed stuff, rolled over stuff, and battered stuff unintentionally and with all parts of my body.
I choked when drinking liquids and on my own saliva. They just ran down the back of my throat and caused terrible coughing spells. I choked because I couldn’t quite tell where the liquid was and swallow at the right time.
I started drooling. My mouth didn’t seem to be able to hold the saliva in. I couldn’t sense that I needed to swallow, so the saliva ran out.
I ate like a warthog. Food got everywhere. It was hard to get the food onto the fork, and things started getting cut up for me. The small, intricate chores of daily life were hard, like cutting food and tying shoes. One night we had rice, it went everywhere, some got in my mouth. I couldn’t hold a glass steady enough not to spill. I had to change my shirt after every meal.
I had sores on my gums because when I brushed my teeth, the toothbrush would slip and slam into my gums. I couldn’t brush more gently or precisely because I couldn’t control my strength or coordination. Sometimes I found it easier to hold the toothbrush still and move my head rapidly from side to side. It looked crazy, but it worked. Flossing, forget it.
I had gas, a lot of gas. I think it was due to my new sedentary lifestyle, immobility. August was my fourth month of being a couch potato. Every movement caused gas. The struggle to get of the couch. The struggle to stand. The struggle to walk. There was a snowball effect. As I tried to stand and walk, I would fart and this caused me to laugh, and then I would fart some more and laugh some more. Laugh. Fart. Laugh. Fart. Laugh. Fart. Laugh. Fart. Laugh. Fart. Laugh. I couldn’t stop laughing until all the farts were out and done with.
Sometimes the farts surprised me. They just came out unexpectedly. For the first few days I was a bit self-conscious. I dealt with the embarrassment by announcing that I farted, “GROSS. I FARTED. CAN YOU SMELL IT? SORRY.” But the gas was so persistent that I let the embarrassment go and acknowledged what was happening. “OOPS, I FARTED.” “I FARTED.” Since I couldn’t control the volume of my voice or the need to acknowledge the gas, I embarrassed my parents in public, multiple times. “OOPS, I FARTED, I FARTED, OOPS, I FARTED, OOPS.”
I slept a lot, about 12 to 15 hours a night. When I got up in the morning, I moved to my camp, usually spending the rest of the day there. I would nap for a few hours, slowly knit potholders with badly coordinated hands and watch TV. A potholder that normally took a couple of hours to knit was now taking a couple of days. I didn’t read because my eyes weren’t working right. I had trouble moving them down the page from line to line, I always lost my place.
I started watching Ellen at 3:00. I liked watching Ellen every day, having a show. It made me feel a part of the world. I watched the show from my couch at the same time millions of other Americans were watching the same show from their couches. We laughed at the same jokes together, but we weren’t really together.
In early August I developed what we named “ghost ring.” It felt as though I was wearing a ring on my left middle finger, but there was no ring there. This was strange, kind of like the numb tongue, which I still had. I put a non-ghost ring on that finger but I knew the ghost ring was there too.
I grew an obsession for donuts, cookies and kitties. The circle of my life had become very small and the small things made me happy. I was easy to please. I just wanted to pet the cats and eat sweets. MMMMM, donut. Mom let me pet the cats in the house, not only in the house but in my bed. Pets are not allowed in our house, she broke her rule because I was sick. Mom brought the cat to my bed. The cats are not at ease in the house, so I had to hold them tightly as I pet them. I loved petting those cats, and I missed my cat.
One night I was taking a bath and I couldn’t get out of the tub. I couldn’t get my arms or legs under my body in a way to get myself up. I even tried rolling onto my stomach and trying it that way, but it didn’t work either. I tried and tried but I couldn’t do it. Mom and I had to drain the water and have Dad lift me out. The next day Mom came home with a shower bench. It worked well, but it was still difficult, as was everything, because my coordination was so bad. Mom remembers with horror, “the day my daughter turned into a manatee.”
By mid August I was like a fish on the shore. I could bend.