Snow-taxia: Ataxia, Part 3

The first snowstorm of the year provided me with an opportunity to compare my ataxia symptoms from last year to now. I joked with a friend that weather like today's gives everyone a moment to experience what it is like for me and other ataxians every dry, sunny day. 

New Paltz, where I live, is laid out on a gentle downward slope to the Wallkill River, the north-flowing, rather narrow (only about 175 feet wide at New Paltz), tributary of the Hudson River. As this year unfolded, I became aware that walking downhill, even with a cane, is becoming a greater challenge. I take it slowly. Walking uphill, I can still develop a rhythm (this is the only chance I have to tell anyone that I have rhythm!) and make my way. 

Watching the snowflakes accumulate.
Photo by Mark Aldrich 

I am very happy that I can walk safely. I refuse to give in to unhappy thinking about things lost or experiences that I can't really do again--heck, I'd enjoy making snow angels like when I was a kid, but I do not know what the bottom half would look like (an angel on a stick? a realistic depiction of someone thrashing about in the snow?) and I and whomever would be standing by to pick me up (completely necessary) would pretty much erase it upon picking me up. I am lucky that I have people in my life who will pick me up if I fall in the snow. I can walk and I am not going to play emotional games with myself, listen to the inner monologue about how soon? How soon until I can not, or will not, or fall badly? (Soon enough, and my worst face plant of a stumble and fall so far in 2013 was on a sunny, dry day, anyway.)

So I ventured out this morning to visit my support group and not spend the day watching the snowflakes accumulate. At first, I was not going to risk a fall--after the first snowfall of the season, sections of New Paltz's sidewalks sometimes remain snow-covered until around May 15--and I know that the cane is not my friend on ice. Things that I used to like about walking in winter, I no longer enjoy: the moment of unsureness, of feeling a slide start, or the sound of my boot punching a crunchy hole through what I thought was solid ground--these now represent some of the difficulties with the everyday that my new world offers me.

I safely arrived at my destination. No falls, no slips--so now I am probably falsely confident. (But I happily accepted a ride home.)

A Duck About Town; Ataxia, Part 2

It is hard to see, but on the left side of the "The Gad About Town" tab (at least on a Windows browser) there is a little square box that looks like a blob of brown and green. I first placed it there as an inside joke with myself, but the story is worth sharing.

It is a photo of a duck. 

In 2012, I was diagnosed with a still-undetermined form of spinocerebellar ataxia. (I just noticed that the word "spinocerebellar" now freely flows from my fingers as I type it; I insist on Wikipedia'ing it to check the spelling--to preserve the illusion to myself that this is still new to me--but it is now forever in my vocabulary.) This disease, which I have written about before ("Ataxia") and will again, is progressive, degenerative, affects my sense of balance, and is robbing me of my physical control of my legs. 

My symptoms first appeared in 2006, I now realize, when my walking began to slow. I was always a rapid walker, and I felt like I was moving my legs in the same way I had always moved them, but the time it took for me to complete familiar walks was getting ever longer. Even in 2005, while mowing a friend's lawn, I noticed that it took me longer than it "ought to" have. My legs were tiring easily. Finally, I started to run late for appointments (most hazardously, my job across town) and was perennially underestimating the time it would take me to walk somewhere.

All this was new. I shared what I was experiencing with no one, except to promise when my lateness was noticed that I would "do better" next time.

* * * *

A blue heron, patrolling the shore
like a cop on the beat.--Photo by Mark Aldrich

This spring and summer, some friends and I made frequent visits to a pond at a local college campus. A former make-out nook for at least a one of us, this year it became a quiet place to get away from some turmoils in our lives. Several species of waterfowl live on the pond, which is nonetheless quite small. One day a blue heron came by, which is a common but always special sight here in New Paltz. It hung around long enough for me to photograph it walking along the shore.

There are usually a few breeds of duck on the pond, and my friends and I became "expert" in observing the inter-species social behaviors of the different breeds. (In a word, some breeds are just bullies, even to humans who are feeding them breadcrumbs.) We developed story lines about each duck family's day.

One family of five, a mother duck and her four ducklings, became "my" family. This was because one of her offspring was lame. He or she--I decided he was a he, but I believe it is a she (those who know about such things can tell immediately when looking at the photo below)--appeared to have a broken right leg. Cute and small as they all were, the four of them fuzzy and adorable like they were posing for a children's book cover, the siblings would push him away from our breadcrumbs, but he always fought hard for his share.

Broken or born that way, he held his leg tucked alongside, which forced him to remain seated on the ground when the others were toddling towards the crumbs. Then, in a flurry of action, he would start to wobbly waddle, but he was perpetually a few steps behind. He was slow in other ways, too: by the time his siblings were free of their baby fuzz and displaying more grown-up plumage, he still had some fuzz.

I saw that, even with his right leg held in a crook, even sitting awkwardly on the ground, once he started walking, after a few unsteady strides he would catch up to his siblings. But he honked just as loudly as they did, each of them telling the others to mind their manners at the top of their voices. In the water, he appeared to swim as quickly as the others.

* * * *
In 2008, the bizarre sensation of being always on the edge of a fall became a part of my life. I could not walk across a parking lot without first looking across it to plan which cars I would use as targets for potential falls. I started walking with a cane.

Faced with the prospect of crossing an empty parking lot (I worked for an electronics retailer that frequently locates its stores in open-air plazas, so that is why I have twice mentioned parking lots), I would look for an abandoned shopping cart (there was a grocery store nearby) and use that as a walker.

As before, I shared what I was experiencing with no one, except sometimes I made jokes about walking with a cane--I named it "Michael," as in the actor--and I did not have a doctor, because I was 40 and a guy and why bother?

I did not have a doctor, because 40. I was 40 and my legs felt like they were in boots nailed to the ground. I would take a step only to find that neither leg moved.

By 2011, completely foreseeable circumstances had given me the beautiful gift of poverty and thus Medicaid. Now able to afford a few visits to a neurologist, I underwent the series of tests that led to my diagnosis.

* * * *

After that first visit to the duck pond, I did not expect to see "my" duck again. My not-so learned musings about inter-species duck behavior and observations about seeing him clubbed regularly by his siblings led me to my expert prediction. Marlin Perkins in my mind, I lectured one of my ever-patient friends about my sad theory that he probably had been rejected and abandoned "for the greater good of the family."

On our next visit, two weeks later, he was still there. Of course. He was still missing every first chance at breadcrumbs--even those tossed specifically at him--but fought his siblings to get his crumbs once he started moving. They still pushed him away from their second and third chances at crumbs on the ground, but he was louder than the others and was getting faster, even limping, but doing something like using his lame limb like a cane. He was using his lame leg.

* * * *

I use a method of walking that I devised without knowing what I was doing back at the electronics store: I push off with my right leg, like a right-handed pitcher, and swing my legs under me, using the cane to tap a rhythm. Once I get myself up to speed, I can outpace many of my friends. It is difficult for me to stop suddenly, like when I am jay-walking, so I do not do that. There are days where I do not know what my legs are going to do and we seem to educate each other.

Two friends who walk with me step by step.

Every day, I live with the sensation of being on the edge of a fall all the time, even when I am sitting on a chair that has arms on both sides, and I stand upright by bracing myself with the cane, standing against a wall, or by surprising a friend (often, my beautiful girlfriend) by grabbing their shoulders. In the photo seen here, taken in October, I am with two of my closest friends, but I am holding myself up with a folding chair on each side.

Because I have a diagnosis, I know why I am experiencing these things, and new developments can no longer be as surprising as the discovery in 2008 that it seemed that I could no longer walk. Because I have friends in whom I confide (like you who may be reading this), any new development will not be experienced like running head-first into a wall, which is how it felt for me in 2008.

* * * *

My buddy.--Photo by Mark Aldrich

The photo at left is of "my" duck, closer to fully grown in July, waddling up to me. He would take two steps at a time and then pause or plop down, then would take a couple more. First his right foot, then his left, then a stop and reset for another pair of steps. He did not come as close to us breadcrumb tossers as some of the others did that day, but he fought as valiantly as any duck that I would call mine should.

This is the photo that accompanies this blog, next to "The Gad About Town" name. He is my duck about town.

It is now December and I hope he is still with us, but in the warm south, ornery at his siblings every staggered step of the way. 

Four Facts About Me

For the last several weeks, I have been looking on as online friends participated in a game in which they were given a random number and had to share "X Number of Facts" about themselves. Stupidly, I "clicked 'Like'" on my sister's boyfriend's snapshot autobiography and was thus asked to write four facts about me. Here is my reply. I could write several more of these, but I think anyone older than eight or nine could supply a dozen unique facts about themselves. It became something of an essay in my hands and has a twist ending:

1. It is amazing (or not) that I was given the number four, as that is my life-long "secret lucky number." (Anyone who has gambled with me knows about this. Read: The Gad About Town: Against NYS Proposition 1.) Now, I know that in most of the world's luck traditions, if one declares out loud that something is secret and lucky, one has immediately kiboshed all secrecy and luck out of that thing's existence, but that is the beautiful thing about my "secret lucky number 4": It remains lucky and maybe even grows in power every time I speak of my special relationship with it.

2. I left New Paltz in 1995 to work in Narrowsburg, NY, and moved back to New Paltz in 1997. I left New Paltz again in 2000 to work in Cedar Rapids, Iowa, and returned to New Paltz in 2006. (There are legends about New Paltz and eternal return and gazing upon the Wallkill River--I am legend, I suppose.)

3. Depending on my relative levels of optimism or pessimism, I may refer to my spinocerebellar ataxia as an "illness" versus a "condition." The latest feature of this condition that I have been noticing of late (first noticed last year) is that when I can not see my feet, I lose track of which is which. I may think I'm tapping my right, but it's my left that's annoying people around me. After going to bed, I may think my left leg itches, only to scratch it and find it was my right, or worse, that I am scratching the mattress.

4. I pretended to write before I knew how to write. There may even now be pieces of furniture at my family's house with my crayon scribblings on and in them--I did not draw, I wrote, wavy lines that I would then interpret to my parents as a story. I'll guess I was about three or ... four.

Ataxia

What is ataxia, and how does having it affect my day-to-day life? 

I have one of many forms of spinocerebellar ataxia (SCA), which is a progressive, degenerative, genetic (inherited) neuromuscular condition. There is not yet a cure or a treatment for any of the SCAs. The word "ataxia" is Greek, meaning "lack of order" or uncoordinated. What "spinocerebellar" means is self-evident: something is happening to my spinal cord and cerebellum. MRIs taken in 2012 show that my spinal cord is atrophying and also shedding myelin protecting the nerves inside my spine and also that my cerebellum is slightly misshapen, a condition called an "Arnold-chiari malformation." These MRIs led my neurologist to suggest that I have one particular type of ataxia: Friedreich's ataxia. Only a genetic test (expensive to conduct even with the help of insurance) or an autopsy (something I want to put off until very very very far in the future!) will identify with certainty which type of ataxia I have. 

In my day-to-day life, my lack of coordination is evident to outsiders in how I walk and stand. Every moment, I experience life feeling as if I am on the edge of a fall, not a dizziness like a child spinning him or herself around (a continuous sense of vertigo like that would drive me into a fear-filled madness), but the same sensation that anyone has when they are about to fall off something, like a cliff or a building. A "normal" person can lean forward or backward or even to the side, even on one leg, quite far without falling--for exaggeration's sake, picture Buster Keaton in a silent movie held in place by his boots with his face almost kissing the ground--I can't. If I tip over as little as 10 degrees off center, I fall. If I lean over in a chair to tie my shoes, I may fall off the chair--and not head-first. It would look like a ghost had kicked the chair from under me. Anyway, it certainly feels like I may fall, most of the time, even in my sleep, so I adjust my life away from that danger. I walk with a cane, and when standing I will usually stand very near to a wall or the back of a chair or another human being. (I regularly thank my many friends who let me allow them to hold me upright, but I have grabbed strangers' shoulders.)

I am still able-bodied, but because of my slow walking pace, I find that I need to remind people of this. A group of friends and I were recently moving some chairs and tables from one room to another and I picked up a lightweight wooden coffee table (really, there are coffee table books heavier than this piece of furniture), braced myself, and started walking with it to its new room. I did what I always do to walk, whether or not I am carrying furniture: steady myself, push off with my right leg and start counting. Steady pace, little effort, I've got this. Of course, the counting, the slow pace, and, okay, the almost-immediate tilt into a wall, looked to one friend like something else entirely, and he "came to my rescue" and grabbed one end of the table to assist. That caused trouble, as I could not adjust to his different pace, and I let the table go.

The other aspect to ataxia, which makes any quick adjustments to the continuous balance challenge quite difficult, is the slow, progressive loss of motor control of my extremities, starting with my legs. I can not predictably or reliably move either leg to a particular spot on the ground. Every step I take is either a gamble or a guess. I can no longer run or jog (not that I did either of those much, anyway) or walk fast, as I do not have that level of control of my legs. Sometimes, I fall because my left leg will move when my right leg was supposed to. I do not fall very often, not yet, as I have done pretty well adjusting to the condition.

My upper body has not yet been affected, meaning my arms, not anywhere near to the degree that my legs have been. In the future, this may change. I can move items from one spot to another pretty reliably. One other area affected by ataxia is my heart. An enlarged heart muscle (cardiomyopathy) is also one of the most common symptoms seen with ataxia, and I have an enlarged and weakened heart, congestive heart failure, and a potential for arrhythmia.

There are a total of several dozen identified SCAs and medical understanding of the condition has only truly developed in the last 20 years or so. It is estimated that one in every 100,000 people are diagnosed with a form of ataxia; many more live out their lives without a diagnosis. Each day, I am aware that I have a condition; the challenge is to make certain that the condition does not have me.