July

Flobee

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.

August

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.