To Invest, Or Not To Invest....

 

 

     Nine years ago, I had my last position of gainful-employment taken from me because of Ataxia. He didn't really want my job, (Ataxia's pretty much a laze about), he just didn't want me to have it. So because of that, I found myself looking at a new stage of life that had initially begun eighteen years prior to this...when I first heard the words, " incurable Neurological disease". These were words that began a journey...and presented an unavoidable path from the one that I had blissfully, and unknowingly, been meandering down. I say that this new path was unavoidable...because it was as if I had reached a thick cement wall...with a sign hanging there, and an arrow pointing to the right, that stated,"road ahead closed...use alternative route, (but not a warning to proceed with caution). The funny thing was that no one got to accompany me...indeed, as soon as I began to move in the alternative direction, the wall came down and everyone that came behind me was allowed to proceed on the original path.

     This new path was bleak...and I felt as if I were traveling it alone. I soon realized, however, that I really wasn't...that others were also having walls of varying thickness, and other various obstacles, fall right in front of them...forcing them to also travel along new paths, and side roads. In fact, there are so many, that I can imagine that if all the side travels were recorded into a map form...it would appear as if Google and Apple maps had collided, exploded...and been turned into a disastrous mess called Goopple maps.

     Anyway, I have learned a lot since those earlier days...and when I think back, realize that quite a bit has been accomplished. I've written two different Blogs, lead two Support Groups, wrote a book, spoke at a College, had several radio interviews, an interview by a local news station, and had the honor of being one of the main speakers at the National Ataxia Foundation's Convention in two-thousand and seventeen...which was held in San Antonio, TX.

     The inventor of the Balance Wear Vest was in attendance that year. I ran to her vendor booth eager to try one on...(in reality, I tripped, and stumbled...all the while trying to make this look casual...like it was a personal walking style instead of one in which I didn't have a choice). She and her assistants surrounded me, pushing and prodding in their quest to discover my weak points. Once established....that being, that basically I am not so much a series of multiple weak spots, but rather one large weak spot...the experimental weights were applied to the Vest, and I tried it on.

     I was then set free from their administrations to walk on my own, and discover if the Vest was going to make a noticeable difference. To my extreme shock, and joy, it did! I hadn't walked that straight in close to twenty years. My overall balance was greatly improved, and I could also tell that the Vest would be a big boost to my confidence...no, I was not going to sign up for a marathon, or go out looking to get into trouble in a heated game of hopscotch...but this was a definite improvement.

     It has taken me five years since that initial trial...but I finally went and got one, (and if Melissa is reading this, I should mention that she wanted me to get one from the moment I tried one on). We were rather concerned that I had waited too long, and I had advanced to far. The Physical Therapist (who was in contact with, and trained by the inventor) that I went to for the fitting assured us however, that it was never too late...and I had high hopes of a repeated performance from that of five years ago.

     Unfortunately, it is not the dramatic change that the original experience had been. I remain positive however, and have been wearing the weighted Vest for almost two weeks, in combination with the ankle weights, (I tried with and without the weights and settled on with them), the hip belt/brace, and the exercises given me by the same PT. Wearing the Vest does provide me with more confidence and balance. The Vest is also a training tool for your body...and while there was not the immediate change that I had hoped for...I am confident that if I maintain my vigilance that there will be improvement.

    Nothing is perfect...but I will take any steps(stumbles) afforded to me to make things a little better...and the Vest defiantly does that. If you are interested in looking at this option for yourself, the website is motiontheraputics.com

Look Ma...No Hands (The Makings Of A Neurological Prodigy)

 

     It is difficult, to put it politely...to be mindful of the looks that are sent my way...to know that I am the subject of covert whispering and speculation...yes, this has become very difficult AND incredibly frustrating. But, not for the reason you may initially be thinking of. I am embittered by how tiring it has become to continually see the looks of envy in the expressions of those around me...as they observe my natural lack of balance...as they note my fluid spills, easily dropped items, and constant fumblings....all the things that have become so easy for me, seemingly without any practice at all.

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     I had a friend in the last years of Grade School, and into the first couple of years of High School that was nauseatingly good at everything he ever tried. I suppose we have all known someone like this, at some point in our lives. Seriously...everything he did. He was the fastest runner, the best at every sport, the guy that every girl in the class swooned over. He could draw amazing pictures, do things with speed, coordination, and accuracy, and...this is where I come in...play guitar brilliantly. We became friends early on (I guess opposites attract, even in friendships...), and together started a band. I played the bass.

     This guy truly had a gift. True story...from the moment he came home his father had put an electric guitar in his crib. His dad had a collection...and Gunther had grown up playing with the instrument. They were a natural extension of him...and it proved itself in his playing. Any piece of music he could mimic after hearing it just one time. The guy was a Prodigy...back in the days when we didn't throw that word around...and Gunther's gift was very rare.

     It seemed that little practice was ever needed...or called for when it concerned my friend and his guitar playing. This brings me back to the situation with my Neurological Agent-Of-Destruction. 

     I am not suggesting that I practice my natural ability to stumble my way through day-to-day life...quite the opposite is true in fact. But I have learned to ignore the reactions of those who truly find themselves in awe the first time they witness my effortless administrations. I used to become extremely nervous when someone would watch me trying to accomplish a task...and usually, I would mess it up...even beyond my abilities. Now, however, I embrace their attentions, and simply let my gifts of bumbling flow. 

     Again, I just wish that I wasn't aware of the jealousy that most feel when witnessing my efforts. It is frustrating...and being a Neurological Prodigy is not all it is cracked up to be.

It's Nothing More Than A Mafia Hit......

     I write this blog with a certain amount of fear and trepidation...because, like a witness in a criminal case against a crime family, I fear for my well being. Ataxia has ears and henchman everywhere...and at any moment, Ataxia could discover that I am the informant...and see a need to have me "tuned-up" in some shady back alley. Like a reluctant witness, however, I have decided to come forward to name names...and point a shaky finger, (one of the casualties of a forced association with the infamous mob boss Ataxia), at some of the members within the cruel, unfeeling family.  

     At the top of the organization is Ataxia himself. He alone is the very definition of crime, and although he is not widely known...to those who are unlucky enough to have been seen as a lucrative way for him to expand his empire, he is known by several different names and personalities...two of the most common being FA and SCA. He oversees all of the daily operations, and even though he has others underneath him to do most of the dirty work...Ataxia is responsible for calling the shots and can be held accountable for them all. 

     Ataxia's top General, and most trusted henchman...is a thug by the name of Guido Gravity or G-Man for short. Everything we do is affected in one way or another by the forces of gravity...and G-Man's job is to push hard, increasing by various degrees a negative gravitational pull...or to remove it whenever doing so would cause the most damage to the targeted individual.

     He is also a master of manipulating situations so that those who work under him and do his bidding can more easily deploy their crafts. Among this group of trouble makers, is Carl the Choker...whose job is to make all swallowing difficult. In my case, he is always hiding in the shadows...and strikes at random, making it much more difficult to predict. Sometimes Carl will allow me the ease of taking a few swallows of something as simple as water...building confidence with each sip that goes down...until about the fourth one...when suddenly he will strike! I sputter and choke....and Carl nonchalantly returns to the shadows with a smile on that rotten face of his.

     Another of the troublesome crew members of Ataxia's gang is Serducio Stairway...or S-Man. Several thousand years ago, S-Man successfully convinced us that he was necessary...and he's been causing problems ever since. Sure, over the years we have seen inventions to undermine his need: like ramps, elevators, and escalators....but somehow, he still manages to spread himself around freely...showing up almost everywhere, and becoming quite influential. Again, he is another henchman that can be seen working closely with his boss G-Man...and ascending stairs is one thing...but you can really see their devious masterminds when it comes to descending. It can be challenging, to say the least...and often can be quite hazardous.

     Ataxia has many other evil associates working for him, including Artie the Insomniac, Paulie Penmanship, Sammy the Slurrer, and Mikey Motor-Skills...and even though they continue to be free to roam around, I look forward to the day that they are rounded up and put on death row. Until then I will continue in witness protection...seeing my Neurologist, Physical Therapist, and any other specialist I am referred to....like the speech Therapist that I saw about a year ago.

     Ataxia is, among other things, a slimy little schemer...and will do all he can to keep you intimidated. Don't give in to his tricks, but tell everyone you know about him and his evil henchman...and let's continue to shine a light on him and his twisted, dastardly deeds. The hope is that as more people become exposed to his corrosive ways...more and more research will be put in towards ending his reign of terror for good.

     So, don't lose heart, my friends. I believe that one day we will see him come to an end. Until then...keep fighting and hold your head high.

"Quickly", Is Now A Relative Term...

     I have been living and negotiating with SpinoCerebellar Ataxia for seventeen-years now...and for the last several of those years...I have referred to my Ataxia as an unwanted guest, a bully, and an interloper, to name a few. I also gave my neurological-menace a name...Brutus. I consider my constant companion to be male...but also stated that I wish the neurological freeloader was actually a female instead...simply so there was a chance that I might get an,"I'm sorry...as she joyfully and gleefully pushed me down the stairs or unceremoniously tripped me.

     And, even though I am adapting to the new "life-style" fairly well...one thing that is a reoccurring frustration for me is the disconnect between my,"I-can-do-that-quickly-brain"...and the actual,"you-will need to make several attempts-brain". The latest example of this just happened a few days ago. My wife and I had locked the house, gotten into the car and were prepared to leave...when suddenly I remembered that there was something in the house that I would need for this trip...but had forgotten to bring. I boldly stated that I would quickly pop inside and be right out. Ten minutes later...as I finally managed to insert the key and open the door...I realized that, once again, I had way over-estimated my abilities. 

    At least this miss-placed confidence always produces the same outcome...that's something, anyway. I am learning that my definition of "quickly" now needs to possess more of a resemblance to a two-out-of-three round of chess match that has gone into extra innings...than the speed that is implied by that term. 

Run-On Memories....

     The young man at-bat had quite soundly connected with the fastpitch, and I watched him seemingly fly around first base, on his way to second. Impressed, I remarked that he was a very swift and surefooted runner. If memory serves, (a statement that is becoming more and more of a vague certainty), I had never before experienced the level of velocity that I was witnessing.  I tried to imagine what it would be like to run as effortlessly as the athlete on the ball field. However, with a sudden jolt of finality, I realized that I could no longer remember what it feels like to run at all...effortlessly or otherwise.
   
     Yes...of course...I remember the act of actually running. Fleeing a scene, scurring in a blind panic from the wrath of older brothers, or chasing after a departing school bus in full-throated desperation. These are but a few of some very fine examples. Years ago, I also ran with a small group of other twenty-plus-year-olds as we trained and prepared ourselves to run in the annual Portland Marathon. We never did participate in the event, reaching twelve miles in our training and then, just as suddenly, losing interest. Why we didn't continue, I can't remember. Although I never did participate in a marathon, I continued with my daily runs. That, however, seems to be a lifetime ago...back before Ataxia put the brakes on.

     Speaking of putting the brakes on...I have several fond, and not-so-fond, memories of riding a two-wheeled bike when I was a kid. Fond memories included the days of attaching stiff playing cards or sports cards to the spokes of my purple banana-seated stingray bicycle. I loved doing this when I rode around because I felt supremely cool. Of course, I'm sure that everyone who observed me thought I was riding a huge, mean motorbike.

     I'd love to re-live those carefree biker days....by placing cards in the wheels of my walker. Alas, the wheels are solid....not an open design with spokes.  I can only suppose that they are made this way in an attempt to dissuade gangs of older people at retirement homes roaming the halls with cards in their wheels. Soon biker clubs might begin to make an appearance in the homes...as the sound of Harley's continuously ran up and down the passages.

     A few of the not-so-fond memories include accidentally squeezing the front brakes instead of the back brakes. Braking of this nature resulted in an instant rising of the back of the bike. Which, in turn, would transfer into a quick Superman-like dive over the handlebars. Another "non-fond" memory involved running headlong into immovable objects, such as a curb, or a wall. At this point, I suddenly would find myself being propelled forward off of my bike seat. With both feet still planted on the pedals...I would come down hard to perform a random spot-check of the strength and integrity of the bike frame. Although I never saw these spontaneous quality control checks to be enjoyable...knowing that I was mounted on a sturdy craft gave me the boost of confidence needed. After all, I would be taking my bike over the makeshift ramps that all the neighborhood kids had set up in our backyard. Structures of excellent build quality and construction that we had so carefully slapped together out of whatever odd-sized scraps of wood we could find lying around. There were possibly four to five summers when my vocabulary consisted of, " what's for dinner?...can I go?...and, " I think we could make a ramp outta that!"

     We were forever designing and building new ways to gain precious seconds of air time. Of course, the ramps that were made by the ten-to-fourteen-year-old professionals lacked any form of inspection for general safety. Neither were there checks for stable working conditions or the well-being of the kid going over the said ramp. Also unheard of was safety gear of any kind...for two distinct reasons. One was that any safety equipment only added unnecessary weight and drag that would slow a rider who wanted every bit of speed possible. EVERYTHING...from a helmet to extra padding in your clothes was off-limits. Everyone knew the risks...and clearly understood that they were running the possibility of a young death...severe pain...or worse of all, looking like a wimp to any neighborhood girl that happened by.

     The presence of a single square of two-ply bathroom tissue anywhere on your person was grounds for scrubbing the jump. If this happened, you might also discover that your, "backyard ramp- jumping/disregard for the sanctity of your own life," privileges were now under serious threat of being revoked. No one wanted to return to the halls of middle school with the shame of having just spent a jumperless summer because of a vagrant rule infraction.

     The second reason that safety equipment was not worn...was because it wasn't needed. Thinking that it possibly might be was unfathomable...end of the story.

     When the televised antics of motorcycle stuntman Evel Knievel came to the forefront of our notice...well, our style began to change. Suddenly we saw the possibilities of a second ramp...this second quality structure being for the triumphant landing. In the long run, it didn't quite work as envisioned...and for that, I'm glad. Had it been a success I'm sure that the next logical step would've been to line up a few derelict school buses between the ramps. At the very least, it would've been politely suggested that several friends and I lay down between the two ramps, while one of my older brothers flew over us on his bike.

     There was no scientific reasoning behind the placement of the second ramp or the distance from the first ramp, (known in pro circles as the launching-point), other than a non-committal shrug of the shoulders, and a muttered, "looks 'bout right." It was then kindly, and democratically, decided that one of my brothers should attempt the first jump. It was also determined that the two ramps should be moved to the far end of the gravel driveway...allowing for my brother to enter the jump zone at full velocity and not lose precious speed by the drag of the grass in the yard. The only drawback any of us could see was the possibility that attempting the jump on a gravel driveway could...just possibly... increase the pain index of an unsuccessful touchdown. Again, however, as none of us planned to crash, this notion was quickly set aside.

     Like the failed attempt at jumping the Grand Canyon by Evel Knievel in nineteen-seventy-four...my brother's jump ended our two-ramp dreams. As we watched him approach the launching-point...pedaling fiercely, with a grim determination on his face...we collectively held our breath. We watched him as he hit the first ramp...we watched as he shot into the air...and we watched as he came down short by several feet of the second ramp. The front of the bike came down first and plowed into the ramp...and as we watched my brother begin to unceremoniously roll in the driveway...I knew that two things were now showing themselves to be painfully obvious. First, our days of ramp jumping were drawing to a close...and secondly, our quickly disregarded theory about the effects of gravel in the event of a crash was uncannily accurate.

     To bring this back around to running...the ability to do so proved to be beneficial for me that day...as I went into a full-on panic mode and ran screaming for help. This story from my childhood returns me to my original point, which was...that I remember running...I just don't recall how actual running feels.

     How does this help...or relate to Ataxia. I was thinking about how easy it is for us that have lost abilities to become negatively focused on those losses. I find though that letting memories become a joyful thing in my life...instead of negative ones that serve to only accentuate the losses...helps me to face the present in a positive way. It is not always possible...or easy...but I try to see "lost abilities" as opportunities to share memories from days past. Besides...I find that I no longer desire to jump a purple-banana seated stingray bike in the driveway!

     Thank you for letting me share this one with you.

Forever Scarred....A Simple Update

     "Well, that's going to leave a mark!" And indeed, an MRI look-see at my Cerebellum in 2003 which confirmed the diagnosis....showing that Cerebellar Ataxia had left it's ugly mark then and continues leaving physical markers now...like pushpins in a map. For the first 14 years or so, I had an unknown form of SCA....but because I wanted a number like it seemed everyone else had, I decided to designate one and apply it to myself. For a while, I jokingly told others that I had SCA 24/7.

    Recent genetic testing has, however, upgraded me into a different category...a much more rare form labeled SCAR. Actually, my exact diagnosis is SCAR 8.....which to my understanding is a Recessive Autoimmune form of SCA. It has to do with the SYNE1 Gene.....which I still don't know if it is pronounced SIGN1 or SIN1, although the latter pronunciation would get my vote! Whatever the case, it would seem that all my earlier marks have now left me permanently SCARred.

     The recent change, or update to my diagnosis, will have no negative bearing on my forward movement...but I will steadfastly continue to point to the future!

A Question Of Dexterity.....

    The last official Blog that I had written and posted...titled, The Two-Pronged Security Breach....was almost 2 years ago. I then decided to take a break from writing and instead post each chapter of the book...The Last Laugh...which I had written over the previous summer. There are also printed copies of this book which come with some extra material. I have been asked on several occasions in the 2 years since I have stopped writing if I intend to continue the Blog...or to write another book...something along the line of, Ok I Was Mistaken, THIS Is The Last Laugh!

    When asked this question, my response was always...."I don't think so because I believe I have said all I that want to say on the subject". I felt it was time to move on to other projects. What I have since discovered...is that for the very first time in my short 54 years I underestimated the situation (if you believe that then you and I will get along just fine). Instead, what I have discovered, to my delight...is that there is still plenty of fuel in the creative tank.

    I am still draggin' the unwanted guest Ataxia around for a ride...because, after all, it's my life, not his. So, I would love to present you with the next installment...a few thoughts I had, titled...A Question of Dexterity....hope you enjoy it.

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   The question of hand-orientation can be a difficult and perplexing concept to fully grasp. I have made the choice of which hand to use much easier for myself.....by creating a simple little rhyming jingle. I sing it whenever I am confused...and I will share it with you. Feel free to use the song whenever you may find it to be helpful. It goes like this...
                                                     Left hand....Right hand,
                                                            it really doesn't matter....
                                                            cuz neither one can.
                                                     Right hand...Left hand,
                                                            can't be hold'n nothin....
                                                            everything falls through...
                                                            may as well be clutchin' sand.

    I didn't put any musical notes with it...for the purpose of allowing the song to be sung in anyone's preferred musical style. Personally, I was going through kind of an adult contempo-fairytale phase when the limerick started dancing in my head. You should know though that you can put it to any kind of music you want. Do you like Icelandic speed metal? Country music, or Opera maybe?  Whatever fits your style...

    Growing up I was always strongly right-handed. In fact, my left side has always been noticeably weaker...both in strength, grip...and overall balance. One side was good(right), and one side was weak(left)....like I was some kind of ataxian-halfbreed. However, I always admired those who were ambidextrous...and was forever trying tasks with my left hand...simple things performed with my right hand, like brushing my teeth, throwing a rock, baseball or hand grenade, or writing my name. These attempts were all failures of course...and thus, I remained firmly right-handed.

    As with the general loss of balance, I never fully realized the privilege that it was to be "handed" at all...until, of course, the infamous day that it all waved goodbye. Ataxia has brought many things with it...being the equal opportunity personal and social action that it is...and I no longer have to think about which hand is the most reliable. The dream of ever becoming ambidextrous...easily switching routine tasks from right/left and back to right again...has now become a life of ataxia-dextrous. A world in which anything....at any time...whether in the right or left hand...can be bobbled and dropped. Sort of a frantic juggling, if you will. Ataxia also brings a new definition to being viewed as a person who takes a general "underhanded" approach to life.

    The general loss of dexterity may not be "hands-down" the worst byproduct of SCA...but neither does it deserve any clapping or applause. And while I'm on the subject of clapping...my attempts look more like the shewing away of 2 flies...like I am directing fly traffic...as if I'm telling the flies, "you go to the left and you go to the right". Really, all I need is some runway attendants' flashlights.

    I would never make a good criminal...I think this is largely due to the fact that I wouldn't be able to write a ransom note or leave any written taunts and little clues. I think that the loss of writing has been the hardest for me. Not to be able to take notes at a meeting...fill out and sign a simple restaurant check....or make a list of unreasonable criminal demands. Like...I want all Kale removed from grocery store produce departments...go, you have 30 minutes!  Speaking of life on the other side of the law...I've also said before that the other thing I couldn't do anymore is to serve as a getaway driver. I no longer possess a driver's license...and I wouldn't want to get caught fleeing a crime scene... without the legal permission to drive a car. I could get into some serious trouble. I might receive a ticket...or get sent to traffic school, and that wouldn't be very......wait for it.....handy!

    Ataxia has also given to me some amazing sleight of hand abilities....the gift to make little things suddenly disappear. People ask all the time how I do it...and I don't mind revealing the mechanics behind the illusion either. I always start off with..."see, the first thing you wanna do is get a Neurological disease or condition, either one will work for this trick....."