And....That's The Magic Of....

 Here is the audio version of this blog: www.youtube.com/watch?v=5OYyqQgOufk 

    As I look back on my younger days, it is amazing to me to realize and see just how many things are related directly, (shockingly, I realize that I'm still the same person now physically, as I was then.... as a child....figure that one out), to my onset of Ataxia in my adult years. If you have been reading my blogs, you know that I have been able to connect quite a few events from my childhood to my current life.

     Having these events in my life makes it all seem to be very convenient... like I am making it up just to prove a point, and to give myself something to write about. I assure you though that this is not the case. You are, dear reader, getting the truth and nothing but the truth.

     A couple of days ago I wrote a Facebook post about the wonderful world of magic that Ataxia is. I had just made a laundry bottle cap disappear right before my very eyes, (if I hadn't been there I probably wouldn't have believed it). This was easily accomplished, by fumbling it, eventually flipping the screw top behind the dryer, where it promptly rolled underneath, to never be seen again....unless of course, I moved the dryer, but that would reveal how the trick was done. Anyway, this thought opened up another previously uncorrelated memory from my childhood....because on the Christmas of my ninth year, I received a beginner's magic set.

     One of my favorite things to do, however, was not learned from the beginner's box of tricks. I used to really enjoy performing for friends and family the fifty-two-card-pick-up trick, which I guess wasn't much of a trick at all. Basically what you did was fling a deck of cards all over the floor and then yell out for them to now pick them up. Unfortunately, this was a one time trick...as most of my audience understood how this particular trick was done...and there almost never seemed to be a particular eagerness expressed for a repeated performance.

     The fifty-two-card-pick-up trick was an easy enough feat to master, required no practice beforehand, nor did you need to spend any energy in forethought. You basically just grabbed a deck of cards in one hand, bent them like you meant to shuffle them, and instead shot them all over the floor. This is much the same concept as my Ataxia. It needs no forethought, planning, or skills.....and quite often when I grab something with one hand, it may look like I mean to do something else...but in the end, there is just a big pile on the floor that has to be picked up. Ataxia is also a trick that I am not eager to repeat.

     One of the tricks that DID come from the box, though, was performed with what looked to be an ordinary deck of playing cards. In reality, only half the cards were a mix of standard cards...the other half were all the same card...which, in my case, was the five of hearts. The idea was to fan quickly through the deck before an utterly awestruck individual and have the complete deck appear to be entirely normal. The card deck would then be placed face down, tapped a few times with a finger, and fanned quickly again before the person for who the trick was being done. However, this time the entire deck would appear to contain a vast number of the same card....which again, in my case, was the five of hearts.

     Even though this was a simple trick, done forty-three years ago, I still feel bound by the magician's code to not reveal the secret behind this dazzlingly impressive card trick, (it was a rigged deck...where the two different types of cards were of differing lengths. So depending on how you held them and fanned them out, one or the other face-type would be dominant and the only one to show...but you didn't hear that from me).

     In a lot of ways, that old card trick resembles my Ataxia.... which is to say that, depending on how I hold onto things, and shuffle them throughout the day, this will have a significant determination on how it will go for me. Either one type of day will be dominate and be the only one to show...like dropping EVERYTHING, constantly stumbling, and continually walking into objects. Or the other reality will present itself...where I fall, stumble, and walk into stuff only HALF the time...which is also known as a good day.

     Ataxia has provided me with the skills and natural abilities to pull off some pretty spectacular tricks. Like a good magician, however, I will not be persuaded to give away the secret behind the trick. Anyway, the truth is that no one actually even asks me how my particular Ataxia tricks are done....they only want to know why they were done. This state of affairs has always been a mystery to me...as no one ever asked Houdini, or other well-known magicians exactly WHY they did a particular trick. People were only obsessed with knowing how they did a certain trick. This seems to be extremely backward to me, as no one has of yet identified and come to truly appreciate the magic that Ataxia is.

     There were, of course, other tricks in the box that I received in my youth, the details of which  I can't exactly recall....but the common theme behind all of them was based on illusion. This just so happens to be another way in which my Ataxia is tied into my nine-year-old magician's skills. What appears to be normal....is not always that way. Of course, the more time I spend with SCA, the more I realize that I have to downplay any illusion of looking normal. You know, like walking straight, poking myself in the eyes and other vital organs, etc, etc. I'd never be able to get anything done if I didn't, because people would constantly be stopping me and wanting me to perform some sort of Ataxia-based-illusion for them. I don't have that kind of time.

     And before anyone asks me...no, I cannot take on an apprentice. I don't know exactly why I have these skills, but it can not be taught. Believe me...if I could open up a school to the general public, and teach them Beginning Ataxia, I would...because I'm sure I could make millions...or maybe just thousands...hundreds? It would be more than I have right now, anyway. Maybe I could contribute to the popular How-To series, by writing an Ataxia Magic And Illusions For Dummies Handbook. It's actually not that hard...all you need is to own an official copy of Ataxia...the rest will come naturally.

     I'm kidding, of course, and if you have read my writings, then you know that I do this. I also can be serious, and very sober,....but I joke about Ataxia in my life in an effort to lighten the mood. Yes, Ataxia is serious...and yes, there is plenty to be frustrated about. I believe, though, that we need to experience some balance in our lives. Life with any form, or kind of Ataxia, can be challenging...and depressing...but it can also be incredibly ironic, and funny. It is a matter of how you look at it...and I, for one, will continue to find the humor in my situation...so that Ataxia will not try to highlight, and bring out the negative....as it has a way of managing to do if we let it.

     Almost three years ago I wrote a blog entitled, Seriously?, in which I went into depth on my feelings about Ataxia. I have included the link to that writing if you would like to read it again...or for the first time.

http://jasonwolfer.blogspot.com/2014/01/seriously.html

It's A Pinball Kind Of Thing.

 Here is the audio version: www.youtube.com/watch?v=YLrzz-HOKUE 

    There is a phenomenon that continues to happen in my life.... and I am pretty sure that the blame, all the shout-outs, and a significant amount of the credit should go to Ataxia. Well...that and the fact that while attending College, I spent a portion of my study time repeatedly sending a little steel ball (that had done nothing wrong, mind you) shooting and bouncing around inside a lighted arena..... an electronic game board that was full of numerous and varied chances for the ball to become shot around ....violently and seemingly without end.

     Two friends and I would go, at least once a week, to a 24-hour restaurant that was located at an all-night truck stop. During our spurts of studying....(which, really, could be defined more as long sessions of eating pie, french fries, milkshakes, and/or drinking gallons of coffee)....we would take rejuvenation breaks, in which we would visit the game room in the back of the establishment and play copious amounts of Pinball.

www.youtube.com/watch?v=4AKbUm8GrbM

     Never once, while vigorously and rather enthusiastically batting the ball back into active service with the button-activated flippers, did I stop to ponder, reflect, or even consider the possibility that there was a day coming shortly when the spirit of the little steel balls everywhere would exact their revenge. I didn't think this way 32 years ago, but I do now. I reflect on my likeness to that steel ball from yester-year, every time I ram my shoulder into something and I am sent springing into another object. I either bounce back and forth between these two items, or I am sent into a third obstacle. I walk around my house all day feeling like I am trapped within a giant Pinball venue, and all that is missing is the large scoreboard that tallies the growing score, with the sound of the constant beeps and whistles.

     Ataxia is not easy...nor is it a good time....but I have always tried to find the positive side, and dwell on these things in my dealings with my Neurological sidekick. Being like a ball in a pinball game is not always easy...or fun either....but it does require movement, and keeps me on my feet. Even though it becomes increasingly challenging to navigate and move around sometimes, I believe strongly in the motto that says, " If you don't use it, you'll lose it".

     The ball is also producing some positive results....as it flies around and racks up points. I'm not saying that I fly around....but at the end of the day I can look back and see that I have at least tried to be productive.

      Ataxia has brought back certain aspects of bounciness, and large amounts of springing and ricocheting into my life, and I just keep trying to beat my own top score!

And, This Next Request Goes Out To...........

 This is audio version: www.youtube.com/watch?v=WqAA06ypj88

  During the 1970's, when I was...uh, a wee bit younger....life's activities revolved almost entirely, in one fashion or another, around music. My older brothers always seemed to have either, the radio playing or they were spinning one of their favorite 45s on our little one-speaker record player. In those days I also owned a little red transistor radio that accompanied me on my journeys and adventures around the little farm that we lived on, and into the woods behind our house.

     In the school year of 72-73, I was in the 3rd grade and launched into the musical journey that would influence the rest of my life. Everything started for me when I picked up an alto saxophone and set my sights on joining the 5th-grade band, which really, was my first opportunity to play a role in and to be a part of any form of organized group. And so, with this goal in my sights, practicing began in earnest....by my quick attempts at laying down some seriously smooth saxophone licks....but which unfortunately came out more like the shrieks and screeches of two desperate alley cats fighting over one tiny scrap of food. Whenever I saw someone playing a sax in a nightclub scene on television, they had made it look so easy. It appeared as if all you had to do was pick one of the things up, and blow into it. Apparently...it was going to be slightly more challenging than that depiction.

    So...I practiced...and practiced...and I did very well, ending up playing 1st Sax in the 5th and 6th-grade band, (by-the-way, the 5th and 6th-grade band members were viewed as being on the professional level as those who perform before a sold-out crowd at Carnegie Hall). I was at the height of my musical career. Eventually, I finished the 6th-grade and moved up to the 7th and 8th-grade band. I continued to flourish at this level as well, and to this day wish that I would have stayed with the saxophone.

    Alas though, halfway through my 7th-grade year I was seduced by the call of the rock band...and, well...I traded in my sax for an electric bass guitar and an amplifier. I had two friends that were very gifted as well....one played the electric guitar, and one had a rather large drum set that he knew his way around quite proficiently....and so, it seemed only natural at this point that we would form a band. We would get together every Friday night to jam. We would stay up all night....wildly, enthusiastically, and loudly playing through cover after cover of our favorite rock tunes. The 3-piece band carried on this way for two years, until we decided to write a six-minute instrumental that would be entered into a local contest.....a song that we hoped would make the final cut, and be a part of an album that would showcase various local bands.

Above is a picture that is roughly a representation from my beginning years as a bass player.

     We stayed up all night writing and recording a track that was felt to be a perfect submission for the album. During that evening, however, some things within the band changed, and that next morning it was decided that we needed to split up. The track that we had worked so hard on never saw the light of day. I have no idea what happened to the recording, and I never heard the song again from that day forward.

     I entered High School around that same time, and I joined the school's jazz band. I was a part of the rhythm section of the band, which consisted of an electric guitar player, a drummer, and a keyboard player. We accompanied 30 brass instruments and served as the structural backbone for the big band. During those days, the intricacies and demands of playing jazz bass helped to stretch me and sharpen my playing skills.

      At the same time, my oldest brother acquired a beautiful seven-piece drum kit. He assembled the drum set in the basement of our house, and with a friend of his on six string, and myself on bass...we formed another band. For quite awhile we stuck to doing covers of songs, from bands like The Eagles, Joe Walsh, and Bad Company...but eventually, we were engaged to play at a party at the house of the guitar player's brother. It had a particular theme that we wanted to fit into....so we changed the name of the band, and I set about writing several songs that were a good match for the situation in which we would play.

Pictured above was the band with my older brother who played drums. I did not get a picture with him, but I really wish that I had. This was the last band I played in.

     We continued to play, and have fun together until I went away to College. I was gone for several years, and within that time priorities changed. My brother met a girl, and when they became serious he had less and less desire to play. He eventually sold his drums, and a similar thing happened with the guitarist as well. I came home from College with different ideas and desires, and we never played together again. I continued to play once in a while, but without a musical group to be a part of, I quickly became bored and over the course of time discontinued playing entirely.

     However, to this day, I continue to have a deep-seated connection with music....and I gave you a brief overview of my musical background, not because I think you need to know it...or maybe even want to know it...but so that I can say this......

     It is approximately thirty+plus years later, and I find myself wondering if music is a force that could influence or shape my Neurological partner-for-life, Ataxia. Or better yet, maybe I should just cut to the chase and inquire whether or not Ataxia takes requests.

     Do you think that if I requested The Police's Don't Stand So Close To Me, that Ataxia would get the idea that I need some personal space? Or, if I were to request Don Henley's You Don't Know Me At All, do you think Ataxia would realize that it is not the one in charge, and stop acting all haughty and superior? Would my SCA get the idea that I am done with him, and it is time to leave if I played Eddie Money's Get A Move On?

     Unfortunately, my Ataxia would not be affected in this way, ( for he is very stubborn). Through the course of my life, however, I have learned that music is a gift, and can lift my soul to places that go far beyond myself. Through music, I can easily lift my focus and thoughts from daily struggles and the trials, and turn them to see the bigger picture of life all around me. It helps me center my thoughts, marvel at the Creation.... to realize that life is so, so much bigger than me, and does not revolve around my Ataxia.

The above picture is who I am now...and the bass guitar from the two previous photos has now been replaced with a walking stick.

     Once again, my friends, I want to encourage you not to be saddened by what used to be....I know it can be difficult and frustrating not to be able to do the things that we used to do. I understand the thought...I really do, but I implore you not to stay in that place. Realize that past experiences helped to shape us into who we are today. Take the time to look around, and see that life is bigger than your....or my Ataxia. Life is full of blessings, we just have to be willing to look for them, and then let them in.

I Was Just Trying To Help......

This is audio version:https://www.youtube.com/watch?v=wSl-HRk2jIA
    My Ataxia has officially been around now for almost 14 years, and for good or bad....(I phrased it this way because it really doesn't make any sense to say for bad or bad. Of course, I could have said for bad or worse......and I actually like that, so let's begin again shall we?)

    My Ataxia has officially been around now for almost 14 years, and for bad or worse, he (my SCA is masculine) is always trying to be helpful....... if your definition of "helpful" would be, "let's see how bad we can mess this up!"

    Let's take a closer look at some of the ways that my SCA-man-boy would consider himself to be helpful:

• 1. He is an excellent assistant in the kitchen. 

          No matter the task, nothing is viewed by my Ataxia as being too small, or too trivial, to be transformed into a rather large mess. I enjoy cooking and used to do it professionally. It continues to be a hobby of mine...but from the moment Ataxia showed up on my doorstep it became an ever increasing challenge.

          I need to back up, though, to be entirely accurate. Because working in the kitchen environment has always had its little difficulties and all that the official diagnosis of Ataxia did was to enhance those obstacles. In all actuality, I no longer was even working as a Chef when the news was delivered to me that I was now the proud owner of a Neurological Disease, in 2003. All of my cuts, abrasions, and burns had occurred a long time before then (in all of their numerous glory). There were too many to mention them all, but I will tell you about what was probably the worst one, which occurred time-wise, not very long before SCA's official arrival.

         I had quit the kitchen as a profession, and instead had taken a job at a local wood shop, making cabinet doors. I had also taken a part-time job at a local bakery, and after frying a significant amount of donuts and other pastries one day, I was going to clean the deep-fat fryer before moving on to other tasks. I had just turned off the 375-degree fryer and was beginning to drain it when I saw that the drain was becoming plugged with sediment. I grabbed the long wire that was used to poke open the drain whenever this would happen and proceeded to...well, poke around. That's when I lost my grip on the wire, and the back of my hand was immersed in the hot liquid.

        As quickly as I pulled my hand out of the fryer (it couldn't have been in contact with the hot oil for more than a fraction of a second) the oil had already done its damage. Water and steam are one thing, but oil keeps burning because it soaks into the skin and is not easily removed. I was lucky and got away with only 2nd-degree burns, but the healing process was quite painful.

       Oh sure, there are plenty more stories, and I could share them all...but like I said, I won't. Because this is about today.....and today my SCA insists that his ways around the kitchen are vastly superior.  No matter the size of the job, apparently, his impression of me, and his current assessment of my skills in the kitchen is that I sorely lack in any talent and that I desperately need his expertise.

       After a prolonged food-preparation session in the kitchen, a quick visual inspection makes it unclear as to whether I had been preparing a meal, teaching a seminar on earthquake preparedness, or practicing my fingerpainting skills in anticipation for enrolling in a class at the local Community College.

       .......enough said.

• 2. He is great at parties, and/or other crowded social events.

          When I referred just now to SCA as being great at parties and crowded events, of course, you realize that I was being slightly sarcastic, right? What I meant by the phrase, "great at," is in actuality, "I wish that I could have just left him at home." But you know that I can't, for an obvious reason that I won't insult your intelligence by mentioning....but there is another reason to consider that you may, or may not of, already discovered.

          It is because I could never trust my Ataxia to be alone....in my house....unsupervised.....ever.....under any circumstance. If I could, and ever did leave him home alone, I would first need to possess three separate homeowners insurance policies to cover the mess left in his wake. There would be differing dimensions of holes in the walls from where he fell, huge stains on the carpet from where he dropped stuff, blood everywhere from his various injuries, and broken windows from when he got angry and threw things. And that would be the tame stuff.... I'm not even going to mention some of the more severe things for fear of censorship.

          I have now established that everywhere I go, I am considered an invited plus-one because Ataxia is always accompanying me. So, after I have happily (grudgingly) introduced him to everyone in the room, I try my best to distance myself from him, as people whisper to each other and wonder who invited that guy, and why is he even here?

          If that all wasn't already bad enough, somehow, it seems that now I have even become his designated driver. No matter where I hide...be it, under a table....in a bathroom stall....in a coat closet....or anywhere else.....I am invariably always seeming to be the one stuck taking him home. Apparently, my Ataxia is a firm proponent of the saying, "goin' home with the one that brung ya." It's like I have won the worst door prize in the history of door prizes, and I am stuck taking my "prize" home. He's not even garage sale worthy.

          I have considered before trying to sell him at a yard sale....but even with a drastically reduced price (in which I don't come close to breaking even but actually losing money), I'd still wind up being stuck with him for the remainder of this life. Even a good ol'fashioned unsuspecting buyer wouldn't be able to see themselves owning an SCA.

          I have also been recently thinking of purchasing one of those colorful ice cream trucks. The ones that drive around the neighborhood and play upbeat children's songs in an attempt to attract kids and sell them frozen treats. I'd be like," Sorry kids; I'm out of ice cream, but I have this life-size doll that you could have for free....."

          Dressing-up my Ataxia like an ice cream truck in order to give him away is probably an idea that admittedly wouldn't work...and actually, it's an entirely crazy idea. I'm just so tired of Ataxia's help. Yeah....it's an utterly ludicrous thought, and at this point....I'm 90% sure that I wouldn't try something like this.

• 3. He also assists me in acquiring a good night's sleep.

           Ataxia in this area, for me, has begun to take on the feeling of a struggling romance. I say that because often it seems like Ataxia is trying to keep the mystery alive. Every night when I go to bed is a question as to whether I will make it straight through the night, or wake sometime in the middle of the night, move to my recliner, and sit in silence wishing that I could sleep.

           To be honest, though..... I've never really had a clear understanding of what the connection is between my SCA and the ability for me to remain asleep. I have no problem going to sleep.....it's just staying there that's the difficulty. I suppose it could be that he simply gets bored waiting for me to wake up....and after a few hours, he wants to play again. Assessing the situation (as only Ataxia can do it), he arrives at the conclusion that I have now had ample time to rest (approximately 2-3 hours).

           Occasionally, he will wake me up via a horrendous leg cramp, or by a pressing need to inspect the bathroom plumbing (I suspect that there has been a partnership struck with the bladder). At others times he will jolt me out of a peaceful slumber by plugging in the extension cord that runs an electrical current directly to my muscles....causing them to either tightly seize-up in a cramp, or twitch and buck violently.

           In the light of these things, it makes perfect sense as to why my sleep is affected by Ataxia. However, the vast majority of the time I simply wake up, for no apparent reason, other than to journey into the bathroom just to make sure that....uh, all is as it should be. Then I spend anywhere from the next hour to 3 or 4 hours wondering where sleep went to in such a hurry, and when it might be traveling back my way.

           I may not have a complete understanding as to the nature of the relationship between the random lack of sleep, and my Ataxia. But there are two reasons that lead me to believe that there might just be a connection between the two, after all. The first one is because of the testimonies of others. It appears that the state of insomnia is experienced on a large scale. If I am up in the middle of the night and decide to play one of the social word games, the friends that I play, quite often are also enduring a sleepless night..... invariably playing at the same time that I am.

            The second and the most telling reason is that Ataxia never appears to be surprised when I wake up. He never seems to be groggy, or half asleep...but is always ready to assist me like he's been awake for quite some time...maybe he never even went to sleep at all. You would think that there might be a moment, like in the middle of the night or first thing in the morning, when I could catch him before he wakes up. A moment which would allow me to talk, walk, and see straight....as in, the exact opposite of how people usually act when they first get up. Stumbling around until they've had a chance to rub the sleep out of their eyes, run through their morning routine, and fully wake up.

             You would think this is the way it would work....but Ataxia always comes across as being prepared beforehand, and for any occasion. He is right there....by my side whatever the hour may be. Instantly willing and able to help me make some noise as I try and make my way around the bedroom as silently as possible, trek into the restroom (again, someone needs to do nightly inspections), and then when I move to my final resting place...the easy chair.

            I would love for this to be the end of the story, but there seem to be countless ways in which Ataxia is more than happy to assist me. What I would really like at this point, is if you all would leave me a comment and let me know some of the ways in which your particular handicap tries to help you!


           

      

Oh, Come On, I Can't Be The Only One....

   here is a link to the audio version, in case you would rather listen to this blog: www.youtube.com/watch?v=qs_fJ3mILEs

    It seems to me that one of the first thoughts to enter my mind upon receiving the diagnosis of Spinocerebellar Ataxia was that I was all alone. The Doctor told me that SCA was a rare Neurological disease, and his words left me feeling much like a man on a long-forgotten desert island.

    But, on the contrary, what I have actually discovered, since that first day is that, "Hey! There are other people here on this island that are just like me". That, although it is true that SCA is a rare disease, there ARE other people who have been, and are currently walking in the direction that I was headed, and who knew first-hand and truly understood what I was feeling right at the current moment. Even if some of the physical manifestations are not exactly the same, they could still relate to me.

    This led me to a place of reassurance, and helped me to openly share my life, and my struggles, the frustrations, victories, and yes, even the humor that weaves through it all and binds it all together. It has been thirteen years since my diagnosis and I am still, at this moment, standing within this knowledge.

    And so, with that thought in mind, I decided to share with you all just a few of the everyday occurrences in my life, to see if any of these are more universal than I at first thought that they were, or if I am indeed on a desert island where these events are concerned......

It may not appear this way, but I am standing in knowledge......

    My reactions could, by any definition, be classified as extreme. Even when I am given ample warning that an event is coming, when that event DOES actually happen, I find that I still jump and/or flinch like I have just been probed by a one thousand volt cattle-prod.

    Sometimes I will be sitting in the passenger seat of our car with the window down, and will have my arm propped up and resting on the window sill. I will be told that the window is going to be rolled up, at which moment I have a world of time, (or at least several minutes) , to remove my arm in a normal, organized, and safe manner. But I jerk violently almost every time. I pretty much have the same kind of reaction whenever I have my arm resting on the console between the two front car seats, and Melissa will need me to remove it so that she can access one of the items that lies inside this compartment. She usually introduces the topic, of me needing to move my arm, in a very calm, and soothing way by saying something like, "now, you don't need to get excited, but....". My usual response to this zero-pressure, non-time limit request is to jerk my arm away, as if it were being poked and prodded with a meat fork.

    The bathroom is another area in which I find that my life has become one that is, more often than not, explained with the liberal usage of several large exclamation marks. I really don't mean to slam the toilet seat open, or drop the lid in a violent flurry, but it always seems to happen this way. I find that, through the combined efforts of losing my grip, and not being able to correctly establish distances, that I am in a constant state of either dropping something, or slamming closed cupboards, drawers, and the toilet lid.

    I even use more effort than necessary when sliding the shower curtain closed. If it was possible to make a loud crashing sound when a shower curtain was being closed, then I would most definitely be the one to make it happen! Luckily for me a plastic shower curtain doesn't shatter like glass, or we might be having a different conversation right now, probably something along the lines of being more.....uh, medical in nature, if you follow me.

    Then, there is always the dreaded waste can in the kitchen, with the lid on top that is pedal activated. I mean it's a very nice feature, and also quite sanitary to have the garbage constantly covered, but the foot lever that springs the lid into action is a whole inch off the ground. This fractional distance may sound like an insignificant distance, and a floor-to-pedal ratio to be one of somewhat little consequence, but for me the foot pedal may just as well go ahead and live up to it's name, and be a foot off the ground, instead of just an inch..... because when it comes to lifting my feet up and on to the pedal? Well....at this point, trial-and-error has shown me that there really isn't a whole lot of difference between the measurement of a foot and an inch.

    I also often find that as part of trying to engage the foot lever, I will first have to brace myself by holding onto the counter, and then back the can up against the wall of the kitchen island so that it won't slide around when I step on it. This maneuver is done much in the same way as any respectable loan shark would do it, as he shoves you up against a wall to get your attention.
Sometimes he will even bunch the front of your shirt up into his fists as he pushes you backwards, and I would also use this additional tactic if the trash can was wearing an overcoat and had lapels.


    Sometimes, when I have failed to properly secure the garbage can and it tries to escape, by shooting out from under my first several attempts to depress the pedal, I chase it around the kitchen and end up feeling like there is now no need for any further exercise that day. I feel as if I need to get into a rigorous training program just to prepare myself mentally, and physically, to use the trash can.

Employing the "loan-shark" technique

    I am currently fifty-one, and I have had a sweet tooth, and a " my-eyes-are-bigger-than-my-stomach" problem, for oh.....I'd say, approximately fifty-one years, give or take a day or two. The problem right now, as I see it, is that there is a limit to how big my eyes can grow, but currently, my stomach is undergoing a phenomenon that resembles urban-expansion.

    I guess that I can always buy larger sizes of clothing but, really, there is a limitation as to how big I can have glasses become before they cross-over into the realm of being referred to as a face-mask. Anyway, that's the problem before me. What I think the cause to be of this current....uhmmm.....overload is a different story, because I blame it squarely on my Ataxia!  No, really.....please stop your snickering, and just hear me out. Because of the Ataxia, I no longer work full-time, nor am I as active as I once was, and the same amount of food-intake is not necessary.

    My life has begun to take on the appearance of an old gas carburetor engine. Do you remember what would happen if you fed them to much gas when attempting to start the car? You would just keep pumping on that gas pedal, until the car would finally sputter, stutter, flood, and die. The car would then need to rest for a few minutes, regain it's composer, and the attempt could then once again be renewed. That's me...I just keep pumping the food in, until I sputter, stutter, and flood. I rest a few minutes between meals, and then try it all over again!

    Like most people though, that face limited activity and function, my body requires less fuel, and so I need to respond and train myself to eat less. Although, I have to say, this would be a lot easier if my SCA would do something positive for once, by helping me to contract some kind of eye-food related obstruction, maybe some form of ma-cuisine-cular degeneration.

    These days, I have a very serious love/hate relationship with shoes. For example, I love my walking shoes because they are light, sturdy, and they have the added benefit of staying on my feet. This is a huge benefit that I will get back to in a minute. What do I hate about my walking shoes? The fact that I have to tie them.

    Tying my shoes is truly a paradox, because on one hand I can make the fit very snug so that they won't come off, but on the other hand tying my shoes is timely and cumbersome. I like the quick convenience of slipping into some of the other styles of shoes that I own, and being able to move on to my next agenda item without hunkering in for a long string-tying process. But tying my shoes is good therapy for me, so you see why it's a mix of emotions to choose between the two shoe styles.


    The slip-ons, though convenient, present a whole different problem all their own. Because they are not as tight on my feet, and have a tendency to come off at the worst times, (which really, could literally be ANYTIME), and will cause me to stumble and lose my balance. This has happened to me numerous times, and now you see my dilemma, and why I have a love/hate relationship with my shoes.

    I am currently thinking that the best solution for this is to have a complete shoe tattooed onto each foot. I have very sensitive feet, though, so I would have to come up with a way to add some kind of barrier to the bottoms of my feet so that the whole walking thing would work. I wonder if tattooing a shoe sole with the rest of the foot/shoe tattoo would work........?

    These examples are just a few more of the everyday systematic affects of my Spinocerebellar Ataxia. I would love to hear from you, my friends, if you find that you can relate to any of them. Please leave me a comment.

I am literally just going to sit right here, as I await your comments......

I've Fallen.....And I Can't Stop Laughing At Myself.

here is a link to the audio version, in case you would rather listen to this blog:www.youtube.com/watch?v=b1y3MSdcH_Y

Yep, that's me...having a laugh at my own expense.

    Over the past thirteen years, I have been in a give-and-take relationship with Ataxia, (I give....I and give....and I give some more, and it takes...and it takes.... and it takes some more). It has been a relationship that can be defined as, "close and personal friend", but with the exclusion of the, "friend-part", at the end of that statement.

    What I mean is that at a party, I wouldn't introduce the obvious elephant in the room as, "a close and personal friend of mine". He showed up at my door one day, (Ataxia), thirteen years ago.....just like that, not even a phone call, a text, a letter, a fax, a tweet, or even a smoke signal first to announce his impending arrival, and decided that he liked it so much here that he has no plans to ever leave my side......lucky me".

    I exaggerated, however, when I alluded to the fact that my life with Spinocerebellar Ataxia is one that is trapped in a relationship that is marked by a very one-sided state of give-and-take. There are plenty of benefits, or physical things that I have been able to take away from this sometimes volatile association.

    For example, I gave up my right to walk in a straight line, and in return I took the abiliity to collect various painful, and on occasion, unique bruises. I forfeited the right to manipulate tools, like screwdrivers, and hammers. I've lost the ability to hang on to small items, such as screws, nails, and thumbtacks, but from all of this I have gained the pleasure of experiencing differing degrees of frustration as I have dropped, burned, cut, and stumbled upon other numerous and creative applications for the band-aid.

    It would be misleading, though, for me to just leave you with the impression that the last thirteen years have only been about struggles, and finding new ways to injure myself. Because the truth is that I believe that my SCA has made me a stronger, more confident person. Yes, it is true that more often than not my Ataxia is not a very nice guy, and I have a strong confidence that trying to descend a staircase without holding on to the rails could, and would, not end well.

    However, that is not the kind of confidence to which I am referring to. I am talking about the kind of strength and confidence that makes it okay to be who I am. Some people may see me and not understand, or seek to explain my behaviors in another way....and more than likely in a way that is completely wrong....but I have become reconciled with this reality. I will give you a quick example of what I mean.

    In the picture above, I am pointing and laughing at myself. This picture was not two separate pictures that were photo-shopped together, but rather they are one picture, taken as a panoramic with Melissa's cell phone. She started the picture with me standing and pointing, and once the camera had moved past me, I circled around behind her, lay done on the ground, and became the second part of the picture. When I, with very little effort I might add, threw myself to the ground, there happened to be a group walking by my family who seemed to think, (by the looks they were exchanging with one another), that I was having some sort of problem. They also couldn't quite figure out why my family was standing by and laughing at the situation, when clearly I was experiencing some kind of episode or medical issue. Even after I stood up and they had preceded past us quite a ways, they were still turning around and trying to assess the situation.

See the stick that I am holding on to? Yah...it's the only reason I can bend over without toppling over!

    Over the past thirteen years SCA has also been teaching me some lessons about my life. One of those is that I need to keep a hold of some of the things in my life loosely, and to be prepared to let them go. I had to lose a lot, including my freedom to hop in a car, (or to do any kind of hopping, really), and drive wherever I may need to at any time.

    Another lesson that I have learned during this journey is that I didn't just simply lose some of the abilities in my life, like driving. I gained things, like spending more time with those I love, as they drive me to various destinations. But Ataxia has also reinforced, or enhanced certain aspects of my life. Say, like my ability to have a good laugh at myself. I don't know about your situation, my friends, but you have to admit that Ataxia can, and often does, get us into some pretty unique and humorous situations. I will be honest here, and say that, yes....sometimes I get rather frustrated with myself. Most of the time though? I just have to laugh at myself, and the predicaments that I get myself into.

    For me, the everyday presence of an SCA  has become one of perspective within the reality of a neurological disease. My perspective, or to simply wish that a neurological disease was not a part of my life, does not change the very real presence of Ataxia. But my perspective does have a lot of baring on some of the ways that Ataxia tries to affect, or shape my life.

    Everything about SCA, I believe, is based on, and reflected by, the way I look at it. Ataxia is a serious thing, and I will never under estimate it, or make light of it in someone else's life. But I WILL continue to laugh at myself, mainly so that Ataxia will never be permitted to gain the upper hand, or the last laugh in my life.

Just A Little Shy Of The Gold....Inspired By You.

  here is a link to the audio version, in case you would rather listen to this blog: www.youtube.com/watch?v=K2_s4xyaF_s

    Have you ever been watching a gymnastics event, with all the springing, flipping, and balancing that is a part of the routine, and then thought to yourself, "I could do that"? Yeah, me neither.

    But what I have thought of is that if some of those same gymnasts could look into MY world.....well, the word intimidation is a word that springs quickly to mind....as applied to the gymnasts, not me. I have already been blown away by my newly available abilities, brought to fruition by my Spinocerebellar Ataxia. I may not be able to flip, spring, and balance on a razor's edge anymore, (anymore is a deceptive description of days past because.....well, because I never could do these things), but here's what I can do:

1. The Grab Bar.

    There is, on the back wall of my shower, a fifteen inch grab bar, and every morning it becomes the center point of my strong focal powers for...oh, roughly five to ten minutes. Now, I wouldn't necessarily call what I do a routine. I exercise with, and manipulate the bar, that's true. But what I do could be more accurately described as, "shower-survival".
 
    I grab the bar to step into the shower, which in and of itself may not be a impressive show of acrobatic skill. Grabbing the balance-beam, (that's got a better sound to it, wouldn't you agree), when I close my eyes to apply soap to my face may not dazzle either, but the action really steps up to a different level during the hair-washing phase.

    Unfortunately there are no judges watching, nor is there any film to document this, so you will just have to take my word it. In point-of-fact it's a first-hand account, and if I wasn't actually there I might not believe it.

    First, after closing my eyes, and while lightly holding the balance beam in a death-like grip in order to avoid making a nonscheduled appearance onto the bathroom floor, I wet my hair. I then slowly reach behind my back, grab the beam with my right hand, and pull off a flawless one hundred and eighty degree turn, in a move that I have come to refer to as the Turtle Spin, because of the speed in which it is done.

    Once the shampoo has been expertly squeezed into my hand, (a payoff that has finally been realized, after years of hard work and practice), I then grab the beam with my left hand, and the maneuver is reversed, pointing myself again forward and facing the water spray. I lather my hair, and finish the whole undertaking by closing my eyes, reaching out once again to clutch and strangle the beam in a one-handed grip of desperation, and rinse my hair.

2. The Synchronization Of Anything.....Anything At All.

    I am finding that there seems to be a connection between my diagnosis of SCA and my struggled attempts to find any kind of synchronized rhythms, or patterns. The mere act of bringing my two hands together more than twice in a coordinated clap is proving to be a real challenge. Often it appears more to be the swatting away of imaginary spider webs.

     All is not lost however because I can still beat out a pretty good rhythm, as I pound on my air-drums, upon any surface that is available at the time. Music has always played a large part in my life, and most of the time the infectiousness of the melodies will have me unconsciously taping my feet or drumming my hands in time right along with the song.

    I can also use a walking stick, or cane, in sync with my steps. Oh sure, anybody can use a stick, cane, or crutch. The real question is, can they do it in perfect timing with their steps? Because I can, and I didn't have to practice first or anything. Even if most people COULD do this, I would still tell myself that it is pretty amazing. Hey, I don't mean to brag....I'm just saying. Really, what it's' like, is like having a second swimmer perform in a synchronized swimming event along side me.....the timing is impeccable.

3. At One With The Elements.

    I am also able to flawlessly time the sun and be in the position to hide my features on demand from anyone...at any time. Some people call this ability a chance silhouette, or being in the right place at the right moment. But I call it raw talent. I mean, what else would you call it when someone is able to silhouette after their very first attempt? Natural skill, it can be nothing else.

    Study the picture below. Can you tell if I'm wearing a hat and holding a stick? That's the power of suggestion, you think you see these things because I planted the idea of them in your mind. But those things are not there. Did I mention that I now also have incredible powers of persuasion?

          my first attempt at silhouetting.

4. Giving Shoe Strings The Slip.

    More and more I find that I am relying on the slip-on shoe. It has become my go-to, my footwear of choice. I know what you are thinking, that I have abandoned the stringed shoe....that I have become prejudiced against anything with laces... because it has become just too hard to manipulate two shoestrings into a bow, (you have to imagine this sentence is delivered in a whiny, sarcastic voice).

    Yes, it may be true that tying has become difficult, but I still make myself do it, and still own a pair of walking shoes that I wear occasionally. No, the reason I have begun wearing slip-ons more is for the sake, and convenience of saving time. And whenever I do, it becomes an act of body manipulation that is worthy of a game of Twister.

    First of all, I can't just slip my feet in. For some reason the back of the shoe always folds over underneath my heel, and I can't just simply bend over and use my finger like a shoe horn to guide my foot into the shoe. Well, actually I could, if I put on a helmet or other kind of hard hat first because I would, guaranteed, fall forward every time.

    So, what's to be done? I could sit down to put my shoes on, but that would just be silly. Can you imagine how crazy that would look if I were to sit down first, like a sane person might do in that kind of situation. I mean a guy could get a reputation doing something like that.

    What happens next always reminds me of why I never played soccer, because to be good at the sport you need be able to pull off some fancy footwork, manipulating the soccer ball to do exactly what you want it to do, and go where you want it to go. I chase around my shoes for long seconds with my feet, until I am finally able to pin them in a corner or up against a wall and they no longer have any option but to let my feet in.

    So anyway, all that is left to me is to remain standing and make the feet up come to me, because I have already established that I'm not going to them, if they want the privilege and convenience of wearing shoes then they can just come up to the top floor. However, this step in the whole process, (because I just had to slip in a pun), usually involves a trial and error period in which I try and jam my foot as far into the shoe as possible, and at the same time try and figure out which angle to keep my foot at as I raise it up to where I can reach it, while standing straight, so that it won't fall off. I referred to this period as trial and error because it invariably will take me three or four times to actually succeed in getting one shoe on.

    And before you ask...no, I cannot apply the lessons learned from this current one-foot accomplishment to the other foot, thereby shortening the time needed for the second foot, because now I have one shoe on which causes a whole new equilibrium-planethingy, and the angle needed for the second foot is completely different. All I can do is reset the whole battlefield and run through the trail and error again. This is truly exhausting, but the funny thing is, that it still remains to be faster and easier than tying the laces on my pair of tennis shoes.

    This has been an accurate account of some of the skills, and abilities that I have picked up since my diagnosis in 2003, with a few exaggerations, of course. I mean, what exactly is a equilibrium-planethingy anyway?

    The point that I really wanted to make, however, is to encourage you all to think of the things that are still possible. The things that you can still do, or say from experience, that would be an encouragement to someone else. I also would encourage you to identify possible skills or abilities that have started to show themselves in your life AFTER your diagnosis.

    Don't cut yourself short, each one of you has a unique perspective, and no matter what your stage is, or how long or short of a time you have dealt with your personal situation in life, I guarantee you that there is someone who can benefit from what you know. For example, I find encouragement from you all, in the varying forms of comments, support, and advice that you have given to me. You may not always be aware that you do, but as I observe lives lived bravely in opposition to the physical struggle that you all face, I am deeply encouraged. I dedicate this blog to all of you who have touched my life in one way or another.