How I Spent My Summer Vacation; Learning To Walk Again
I saw a picture that Tree took of me playing Dek Hockey recently. Playing any sport in September seemed pretty unlikely to me this past May, when I suddenly found myself unable to walk, stand for long periods, or even feel my feet or hands. I told myself that when I felt fully recovered, I would tell the story of my weirdest summer ever. Here goes.
It was the beginning of May when I started to feel a noticeable tingling in my feet. It felt like like they were 'asleep' but coming around, with that dull numbness and we've all felt if you sit the wrong way for too long. Now, having a wife who also happens to be an R.N. is a luxury for me, since I am always "tweaking" this, or "dying from" that. She is pretty used to me complaining about things. Even so, when I still had the numbness the next day, and the next, she suggested I call my doctor. I made an appointment for the next week, not thinking much of my situation. But by the following day, the numbness had traveled throughout my foot, and I also noticed a little tingling in my hands, so I sent this more urgent message one morning to my Doc.
"I hate to ask doctor stuff via text, I've been having a numbness in my feet and now hands the last 7 days or so, and now it's creeping into my wrists and ankles...I'm kinda worried."
Now, my doctor and I exchange messages often, about non-doctor stuff usually, and I really did hate to waste his time, since I had an appointment coming up in a few days anyway. His reply gave me no comfort. "Can you be here at 11:30 this morning?" I was now wondering why the doctor would use his lunch break to sneak me in for an exam. My Spidey senses were tingling. Wait--no, that was just my damn feet and hands, ankles and wrists. He would get to the bottom of it by noon.
At the doctors' office, we went through a battery of tests, and did a lot of blood work. A lot. Well, to me it was a lot. I felt like I gave a gallon of blood. When they take blood, you have to sign off on each vial to insure it has the right patient info. But the time I was on my last one, my vision was blurry, and I swear sparkly vampires were hovering nearby...
The doc gave me a few possible causes. Diet was a most-likely culprit, but the blood work would tell us more in a few days. I left the doctors' office, and stepping out into the crisp daylight was the fist time I noticed my steps falling a little heavier. Clumsy, even.
The next morning, I noticed immediately that when my feet hit the cold floor of the bedroom, I didn't feel it. I didn't feel the cold, I didn't even really feel my feet hit the floor. They just stopped moving downward when they reached the tile. The bottoms of my feet were completely numb. It's like they had been disconnected somehow. I couldn't bend my toes to walk across the floor. That's when I started sliding my feet across the floor just to walk.
I texted my Doc again that morning. He was concerned with how my pain was, and if I was walking okay. Since by that point in the day I was now dressed, and wearing shoes, moving around seemed easier. And I didn't want to alarm him, or my wife, I just sorta told myself and them that it was "about the same as yesterday."
This was about 10 days from first noticing the numbness. I spent the day power washing the deck at the house. Standing wasn't a problem, but I did notice a few times the pressure of the water from the trigger wand put me off balance a few times. That hadn't happened before. Was I imagining it? My shoes were soaked, but my feet were not cold. Later that evening, my doctor got back to me--that labs were all normal. The worst news I could hear. Something was waging war on me, and leaving no clues behind.
He asked if I could come back in. He wanted to do a more thorough exam, and go over everything again. I told him at the time that my walking was noticeably slower, and more deliberate-looking as I struggled with my balance, admitting to myself for the first time that this thing was now advancing. I noticed a fatigue in my lower legs, and noticing that made me wonder how many more days down the road would I be discovering more things I could not do? I was starting to panic.
My live-in nurse could tell I was worried. She wondered about a blood-sugar reading in my lab report. It was pretty high. Probably nothing, but she did tell me to ask the doctor about pre-diabetes. It could explain my symptoms. I needed some direction, and I made a mental note to ask him.
By the time I went to see the doctor for the follow-up a few days later, the numbness had begun to climb through my ankles and into my calves. My lower legs were basically like stilts that painters and plasterers wear. I couldn't feel them, but I could balance on them if I didn't move too fast, or suddenly to the side. It didn't even occur to me that driving was now a risk. Muscle memory is an amazing thing, allowing me the luxury of operating pedals without really feeling anything (For now, at least.) The follow-up focused on the previous lab results. The Doc also asked about possible tick exposure. The blood sugar level didn't concern him. He's been my doctor for a long time. I trusted that he knew what numbers to trust. At the end of the second exam, he suggested I see a Neurologist.
A Neurologist? F***. That wasn't the direction I wanted to go. I wanted answers, not more questions. My only previous experience with Neurology was when we took Katie to see one early in our journey with autism. And it wasn't good. I pictured the same situation for me. Sitting around a bunch of smart people who can't speak to regular people about what I'm now supposing are serious neurological problems. And, may I remind you, these problems are advancing. Whatever this was wasn't done with me yet--it was killing me piece by piece. Tree had to drive me to the Neurologist, because the appointment was 3 days removed from my last doctors' exam. In this time my legs had become completely numb from the knee down. My hands, too, were now numb. I was having trouble pinching things, holding a fork, signing my name. Making a fist was next to impossible.
I realized I might never again be able to write a note to my wife in the morning before I left for work. No silly heart drawn with an arrow through it. Stuff starts to go through your mind when there is an unknown barrier closing in on you. How would I ever drive again? Sleeping became difficult. I couldn't feel the cool sheet as I slid into bed. I could feel the weight of my legs against the mattress, but not feel where they were connected to me. I would begin the day lifting my legs from the bed to the floor. I would have to visually confirm they were touching the floor before I would slowly push myself up to a standing position. Walking was an excruciating process of looking down to make sure my feet landed where they were supposed to be, and slowly gaining momentum. The upper half of my body, and my mind knew how to walk. Why could I not remind my legs of actions they were capable of only a week before? I was slipping into depression. Like a dark cloud coming in, but not overhead. It swallowed me up to my knees. And my hands and arms weren't cooperating either. I must have looked like someone was carrying a large stack of dishes in a cartoon, watching me walk down a hallway.
When I started answering questions at the Neurologists' office, my back had just begun to tingle. It felt like there was a piece of tape stuck between my shoulders. A small spot at first, but growing wider. What was happening to me? I was pissed. Scared. Desperate. The standard work-up at this place includes some imaging. CAT-Scan, MRI etc. Just to make sure I don't have a tumor. I guess they were concerned with the advance rate of the symptoms. And the placement. And my stability. I got the needed scans within a day, and was back to see the Neurologist for a few more tortures before we could get some answers. One of the tests requires the patient (Me) to lay on a table while two prongs are pressed into the nerves of the leg, one upper and one lower. Then they throw a little current though them to see if you're responding they way you should. Unbearable pain here equals success. It seems the nerves have just stopped sending messages to the brain, and the test is to see if they are sleeping, on strike, or have vacated the premises. That is the best I remember. It's pretty messed up to see your previously properly working legs, which you now cannot feel, suddenly start moving around like a Herbie Hancock video, or a dissection assignment from high school.
I know this now, looking back. I am a bad patient. I try to be cool. Let the doctors get their work done. But I'm not cool. I'm tired. It hurts. Stop already. Then I think it's done, only to hear that now we have to go to the other side, to see if the nerve damage is as pronounced on my left side also. That was the first time I heard 'Nerve Damage' and it hit me hard. Damage? WTF is damaging me?
After all the somewhat tortuous afternoon, the Neurologist came to the conclusion that there was some kind of auto-immune issue that was attacking my nerves. The most common of these rare issues is something called Guillain-Barre (gee-YAH-buh-RAY) syndrome. In short, your body's immune system attacks your nerves. Oh, and it can kill you. Or paralyze you. Or maybe just screw you up for years while you try to recover.
Coming up: Part 2. Re-training the nerves to work again.