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.

Sorry, But Some Things Are No Longer Optional.

    here is a link to the audio version, in case you would rather listen to this blog: www.youtube.com/watch?v=0BVwtQvdR-g

    There are two small dogs who live at my house.

    In short, what this means is that during the day, I am the only one at home, and thus am the only one to provide walks and potty breaks for them. This, in turn, means that I wear slip-on shoes all day.

    Why? Because I have both inside shoes, and I have outside shoes. The inside shoes are so that I protect my feet when stumbling around the house, and the outside shoes are so that I can walk wherever I need, without the worry of tracking dirt and such into the house. If I didn't wear slip-on shoes, then my day would be completely tied up with the tying of my shoes.

    I would be spending six to seven hours each day just on my shoes alone, and two of those hours would be consumed by the rest stops and/or naps that have become necessary for the rebuilding of my strength after successfully conquering one shoe, and before starting on the other foot. Melissa would come home after a long and stressful day at work, ask me how my day was and what I did, and I would respond with, "well, I got my shoes tied", like it was some kind of major accomplishment.

    Seriously though, sometimes I wonder if splitting an atom, or bringing together matter and anti-matter would be easier and less time consuming. Alas, the days of the thirty second shoe-tie are a thing of the past and I only wear shoes with laces when I know that I will be wearing them all day.

I am pointing off into the distance to indicate that the days of the multiple-shoe-tying sessions have disappeared somewhere over the horizon.... 

   I  really don't want to brag, but it only took me thirteen years to discover that I can't just jump up out of my seat and rush somewhere when any old thought or mood strikes me. Those days are also long gone, and now I need to stand up slowly, while holding on to something, (something other than myself, because that just wouldn't be of any help), and just stand...frozen until I am confident enough to step forward, being sure that my legs will stand-up in their duty to support me.

    Most people would learn this lesson about themselves after one, or maybe two, bad experiences. But I am not like most people. I think that what it was, in all honesty, was that I have been running an experiment over the last thirteen years regarding my instant, on-demand balance. I am now ready to make a formal statement of my finding, which is.... that I don't have instant, on-demand balance. Took thirteen years, but I just wanted to be sure.

    Another thing that is no longer an option for me is, well....now that I have voluntarily given up my driver's license, I can no longer be a getaway-car driver. Oh, I suppose I could be, but it wouldn't be legal, and I wouldn't want to be caught fleeing a major crime scene without the proper documentation. Seems to me like a person would never really be able to bounce back, or fully recover from something like that. I mean, that sort of thing could go in my permanent record and could haunt me for the rest of my life.

    The only driving that I do these days is on video games.

Notice that I am turning the wheel to the right and the steering wheel on the t.v. is still straight? Yeah...I need to work on my video-driving skills.

Nope....not to the left either.....I'll keep working on it,

    Another daily chore in my life that looks different now, one in which, again there is no option to go back to, is brushing my teeth. To be fair though, not all of the credit for the predicament that I currently find myself in can be blamed on my neurological disease. There is another factor at work here.

    About a month ago Melissa decided that I should grow out my beard, and because I am no longer a spring-chicken, my usual red beard is half grey. This is only a problem when I have engaged in the previously mentioned brushing of the teeth. Because of my Ataxia, there is a lack of total control over the toothbrush, and it has subsequently been allowed to wander outside of the mouth, spreading tooth paste evenly around my chin, and cheeks.

    When my beard was kept short, this could be easily spotted because there wasn't very much grey, and as such the toothpaste was quickly identified and rinsed away. However, now that a lot of grey has come in, I can never be quite confident as to whether I am walking around with just an old-guy silver beard, or looking like I just really enjoy my toothpaste. The only way that I can know for sure that the grey coloring is my beard, and not paste, is to immerse my head in a sink full of water to completely wash my face, but then I feel like I should put a few apples in the sink so that I could at least do a little bobbing at the same time and make it a fun game for myself.

    The days of trying to do anything quietly around the house are, also,  all but gone. I don't know when the phrase, "it was so quiet that you could hear a pin drop", was first used in conversation, or who was the one to say it. What I do know for sure though was that they were not talking about me, because if they were the saying would be, "it sounded like a bowling ball that was being violently tossed about in a glass store".

    Oh well.....these days I find life to be much easier if I just drop the pretense of even trying to be silent. I am no longer surprised at dropping things four, or twenty times.... I am surprised if I don't. If this happens more than once a day I start looking for the thermometer and seriously think about calling my doctor.

    Well, friends, we are moving into the Holiday Season, and from my house to yours, we wish you a blessed time. It is hard for me to believe that 2015 is drawing to a close. Time seems to be moving ever swifter, and as I walk through life with Spinocerebellar Ataxia, I do so with the confidence and assurance that we walk this road together. Cheers, my friends.....take care and stay safe.

Rearranging What Is Changing.

  here is a link to the audio version, in case you :would rather listen to this blog: https://youtu.be/Bcd4tJK5iDU

    Unless you are referring to the kind of change that you will receive if you use, say, a one hundred dollar bill to buy a pack of gum, then the prospect of change can be an unpleasant experience.

    I don't know much, but one thing I do know, is that over the years I haven't always done the best job with being able to immediately handle the changes that have come barging rather rudely into my life.  I usually land somewhere in the middle of a sliding scale comprised of kicking-and screaming on one end, and a epic temper tantrum on the other.

    But whether I like it or not, change is a constant, always weaving it's way through my life. This is especially true with the presence of a degenerative neurological disease. However, given enough time, I will usually become reconciled with the forward-moving changes, and arrive at a place of acceptance, peace, and adaption to the newness that the these will bring to my life.

    Over the past two years that I have written this blog, I have done so with a light heart. I have exposed, and shared with all of you, the areas in my life that I have struggled with, been frustrated over, and found strength in and through, while at the same time, trying to show the humor that I see in it all. Not one word that I wrote in any of the past blogs was untrue, and yet.....it doesn't mean that there are not moments that arise in my life that I don't struggle with.

    My writing has been born out of a desire to be an encouragement to others, to lead by example, and to give support to everyone who lives every second, of every moment, of every day with a form of this neurological disease, which causes the condition known as Ataxia. To this end, I share the following:

    My life has been on a amplified course of change ever since the diagnosis of Spinocerebellar Ataxia in 2003, and I am again facing another change in my life. But, even though it is very frustrating, I have already determined that it will not get the best of me. I have arrived at the place where time, and my body have come together. My body, as I see it, is committing an act of treason, but again, I have become reconciled to the next stage of change, and this has led me to the inevitable conclusion that I need to give up my driving.

    Not just my driving but I also need to turn in my license. I will be honest, that as I write this, I just can't think of any jokes. I am doing better with this than just a few days ago, when I arrived at this decision, but it is still new enough that I am not seeing any humor in it. Well...accept for the fact that everyone else on the road can now give a collective sigh of relief. I mean, for crying out loud, I taught all my kids to drive, and that was...what, just last week! Okay, okay...the first one was eight years ago, and the last one was almost four years ago...but dang it, it feels like last it was just week!

    Anyway, I just wanted to be honest, to let you see the changes in my life, and to assure you all that these things may temporarily knock me down, but that I will yet rise again and continue to fight. That no matter what changes come into my life, that I will continue to rearrange and adjust. I also would like to encourage you, friends, that on this life journey we would face the changes together, and that you would continue to laugh, love, and struggle well, right along with me.

Change can be stunningly beautiful!

Something may come along that will try to block my path.....but I will just smile, peek around it, and move on.

Dining Out Ataxian-Style

  here is a link to the audio version, in case you :would rather listen to this blog: www.youtube.com/watch?v=NzF4HLqnqec

    Have you ever heard someone use the expression, "it's right there, on the tip of my tongue"? I think most people have heard or used that phrase before, but if you haven't it is just a simple way to convey that you either have a thought that you can't quite formulate, or that you are having a hard time coming up with the correct words to describe or explain something.

    This kind of situation happens to me quite a bit, and often it feels as if someone is dangling a thought or phrase, the exact one that I am currently looking for, just out of my reach as if I were a circus animal and they wanted me to sit up and beg for an audience. But, what usually happens, is that the minute I stop trying so hard to pull the thought into my grasp, it will simply appear before me. All I have to do now is reach out and take it, although with an SCA, I will have to grasp at the thought a few times before I am actually able to rap my mind's clumsy and wooden fingers around it, and obtain a firm hold.

    However, grasp it I finally do, and experience has shown me that once I have maintained a solid grip on a thought, I then need to clutch it in a stranglehold, and write it down as quickly as I can. Sometimes it feels as if I only have minutes before the thought will squirm itself out of my embrace, spring off the tip of my tongue where I originally found it, and slip off into the night never to be heard from, or seen again. Recently, however, I have been able to throttle a few thoughts about my personal experiences with dining-out into submission, and would like to share them with you.

    When it comes to eating a meal in a restaurant, be it fine dining, casual, or fast-food, I have been pondering on the importance of the proper attire. I knew that there had to be a connection between the choice of color, and style, of clothing worn to eat out, and that of the restaurant that becomes the selected place to dine. But the thought kept eluding me, I knew it was there, but it continued to dangle and swing seductively just beyond my grasp.

    Until, that is, the most recent time that I found myself having a meal in a restaurant. After looking at the carnage that I had left on the table, and the food that I had spilled on myself by the end of the meal, the thought finally edged close enough for me to grab. It finally dawned on me that I should be ordering my meal based completely, and solely on, the color of my clothing.

    An example of this kind of system would be, to only order, say, the Guacamole Burger when I am wearing a green shirt. This way I can walk out of the establishment with my head held high, and not resembling someone who has just spent a month engaged in a high-intensity food fight. Of course, I could just always wear neutral colored clothing when eating out but this would mean that I would have to stick to water, and spilling this in my lap may lead others to land on undesirable conclusions once I stand up to try to exit the building.

    Portion sizes, when this is an option, I have discovered to also be an important part, or consideration, when ordering a meal in a restaurant. If I am hungry, which just so happens to continue to occur quite regularly, then I find that I need to order enough so that food can be evenly distributed onto the table, floor, my clothing, and yet still provide enough to actually eat.

    Besides obvious reasons, like age, I wouldn't order a kid's meal if I was actually planning on getting anything to eat, (I do however wish that they would include a cool toy with the larger orders....this seems like a discrimination to me, but that's a subject for a later time). Sometimes I've wondered if it wouldn't simply be a whole lot easier to order an empty plate, sit in the booth for twenty minutes, tip the waiter, and go home. Or maybe one of Willy Wonka's sticks of gum that offer a full coarse meal.

    A close connection to the choice of the portion size, is the utensil selected. I will always choose the chopstick, as long as the chopstick is rounded at the end and can be used with one hand as a scoop, and.....well, pretty much resembles a spoon in every way. So, by this definition of the chopstick, I guess you could say that I always choose the spoon when given the option.

    I do this for several reasons, one of which is because the spoon permits me to carry a larger payload to my mouth, allowing at the same time for a certain percentage of food to fall off on it's journey. Also because the fork has sharp prongs that become potential W.O.M.D's, or, Weapons Of My Destruction with each bite that I attempt to take.

    I have also been known to fling fork fulls of food onto the floor, while attempting to cut it into mouth size portions. I apply so much pressure to cutting, that when the fork severs the piece that I am cutting, my hand doesn't stop and I launch the food into space. This would be a neat trick if it was intentional, like when someone throws food up in the air, and then catches it in their mouth. I could actually do this, if the object was to not catch the food in my mouth, but rather to hit myself in the eye, forehead, or throat.

    When this cutting-and-flinging occurs at home my dogs are the only ones who benefit. This phenomenon also manifests itself when I try to scoop ice cream, only this is known as the scoop-and-toss. It's kind of the Ataxia version of a game I played as a kid with little square beanbags called Toss Across.

    Eating is just one more of the areas that has been affected by the presence of Spinocerebellar Ataxia. But one in which, like everything else about this disease in my life, can be dealt with through a little creativity, imagination, humor, and a will not to give in or give up.

The Rabble-Rouser Who Would Be King.

here is a link to the audio version, in case you :would rather listen to this blog: www.youtube.com/watch?v=LoC31lYkTEg

    No one is quite sure where he came from, least of all me, but arrive he did. I have always suspected that before Ataxia came to live with me, that it's first thirty-eight years were spent on a remote island where only the crudest of men live, and the observance of societal norms or manners were non existent.

    Or maybe it grew up with a pathologically, psychologically, seriously-whacked out dictator. Or maybe it was a little of both. I don't even know what name "it" went by, before "it" came to live with me. I will probably never really know, but wherever the truth may lie doesn't really matter anymore. The "it" that I have been forced to live with, and am referring too now, has come to be known as SCA.

     However, lately I have come to refer to "it" as a "him". This is because in my last blog, giving him  his own persona is how I associated with my handicap. It struck me the other day that even the most vile of criminals and villains have names, and so it only seemed appropriate for my personal Neurological-thorn to have one too. And once that was decided, I really took the task seriously. I pondered, I paced, I meditated, I wanted a name that would perfectly sum up his persona in one simple phrase.

    I enumerated, struggled mentally, and reached for a perfect name...and then, three seconds later I landed on the name Brutus the Crippler, or The Crip for short. He really hates when I call him that, but it seemed fitting. The guy's an animal, a brute with absolutely no compassion.

    Of course, I would have rather given him a name that is meek and gentle, like Brian the Compassionate, or, Burt the Humble. I would even have settled for a feminine companion, like Grace, or, Faith. Seems to me that having an SCA with female characteristics might at least gain me a fraction of a chance that there would be an apology issued, as she joyfully, and without abandon pushed me down the stairs. As is the case right now, my only companion during the long and bumpy flight down is remorseless laughter.

    I also have a very strong feeling that The Crip didn't just happen upon me by chance. I think that he studied me before his actual physical arrival, and he strongly believed that I would be susceptible to his destructive ways. But this is where I believe that I can turn the tables on him.

     Because I don't think that Brutus was counting on the fact that I would, in turn, study him and discover that he has a predictable pattern. For example, what I have found to be the case is that the faster I try to do something, the harder that task will then become, and suddenly I will find myself engaged in a physical loop were I just keep quickly going through the same small motion.

    Everything from putting a key in a hole, to tying my shoes, to quickly sliding my feet into slippers so that I can go outside. I just keep missing the mark, and the more I try, and the more frustrated I get, the worse my overall attitude and outlook becomes. Brutus knows this, and his objective is to get me so worked-up and tired of trying that I will give up completely.

    He wants me to stay in the frenzied loop. But instead I choose to break the cycle, and his will, by stopping, taking a deep breath, refocusing, and trying again. Refocusing does not necessarily mean that my muscles will cooperate any better, and I may still have a difficult time, but I have let The Crip know that he is not the one in charge. He may want to be, and sometimes it may appear like he is getting closer to being the one who calls all the shots, but he is not.

    Ataxia comes at us in many different forms, with many different personalities. Some are big brutes, like my guy, and some are a little more subtle. Their goal, however, is a unified one; to make life miserable and to make us want to give up by throwing in the towel and wanting to quit.

    And to do that, every one of them (Ataxias) does the predictable by going after us physically. But I am here to remind you that in order for it to touch the Spirit....to take away your ability to love, your ability to show compassion, and to allow the feeling of joy to spread from you and to others...it first needs your permission. Ataxia does not respect you, nor does it need your ascent to take away the physical. However, it does need your permission to steal, redefine and reshape who you really are.

And I, for one, am not going to be giving the Rabble-Rouser Brutus permission, and my deep desire for you, my friends, is that you will not be giving yours permission either!

Hey, I just wanted to pop in and say, "Hi".