These May Help.......

here is a link to the audio version, in case you would rather listen to this blog: www.youtube.com/watch?v=gdq5MT_Kr7E


Over the span of my life, I have been many things. Now, some of these things were, admittedly suggested to me while being shouted vehemently by other people and cannot be repeated in this venue, or in any other polite conversation. In fact, I would be pleased if they were never mentioned again. However, when I think about my life, all the things that I have become and accomplished, a few truths about myself do become glaringly obvious. One of which is the sobering reality that I am NOT an inventor. Oh, I have had my share of ideas over the years. In fact, one of those light bulb moments happened when I was in my early twenties. Back in the late 80's, a friend and I had the brilliant idea of putting a pizza on the barbecue. We used barbecue sauce, and the cheese had a very rich smoky flavor. It was delicious, a true stroke of culinary genius. But a month later, as I was driving past a Take-N-Bake pizza restaurant, I saw a sign that invited people to take home one of their pizzas and try it on the barbecue. I couldn't believe what I was seeing! That was MY idea, and at that moment I saw the potential earnings balloon from a successful invention begin to deflate. I saw profits and company stock swirling down a rather large drain.  One thing I do know for sure, though, is that my wife is probably pretty sick of hearing the whine in my voice whenever I tell that story, although I am not sure why. I have only repeated that particular tale of great tragic woe several thousand times to family, friends, strangers, and even neighborhood dogs. Basically anyone or anything with two ears that I can hold captive for five minutes.

If you have been reading the blogs that I have been writing for the past two and a half years, then you are familiar with all the ideas and thoughts that I have had. Gadgets that I have dreamed up that would simplify my life, from the Pants-Put'er'onr to the Back-Exploding Parachute. I imagined a restaurant, named Che'SpaZtic's, to a form of Ataxia karate, named Attack-Cia Karate. In my everyday journey through life, with Ataxia along for the ride, I continue to see and imagine things that could be possible, in my thinking anyway, and that could be used to help me along the way. Here are several more that I have recently come up with:

The Venetian Stairs.- Stairways everywhere, in every part of the world, would be required to be fitted to have this capability. The idea would be that every stairway would have a rod at the top and one at the bottom that could be accessed by a handicapped person and twisted so that the stairs would fold flat, like window shades, and become a ramp. Not a bad idea, huh? There should be an official watch group set up to go around and identify all the public hazards that are caused by stairs. Maybe I should form a group, named, Be Aware, Don't Forget Ataxians Living Life, or B.A.D. F.A.L.L. for short.

Spray On Clothing.- It has been argued that life is becoming too simple as we lean more and more on technology that is being designed to make our busy lives easier. That we are actually becoming dumber, while our phones and various gadgets become smarter. But what I am talking about here is not just another gadget or convenience for the general public. It is for those of us who, to varying degrees, are handicapped and struggle with every day chores, like getting dressed. The idea would be that another setting would be placed on the existing shower head which would allow a person to select their clothing for the day from their wardrobe. Once finished with their shower, they could again stand or sit under the spray, twist the knob to the last setting, and have the desired clothing applied. I am also thinking of a hand-held unit for those quick changes on the go.

Skinless Food.- More and more with the unrelenting advancement of time I am finding that a choke-free eating experience is, like a lot of other things that were so easily taken for granted, going into hiding, (they have gotten really good at this too because no matter how hard I look I can't find them). It's getting so that I can't even enjoy a cup of coffee without occasionally going for the violent liquid-spewing record. Actually, I think that tacking on a Liquid Emissions Event to the Olympic Iron-man competition would be appropriate. Contestants would run four miles, bike uphill five miles, swim in a strong current for two miles, snipe targets at a thousand yards, and then blow a mouthful of liquid thirty yards. But I digress. My main desire in this category would be apples that are grown without that pesky skin. I'd love to be able to pick up an apple and take a worry-free bite, like I did when I was a kid.

Self-Made Beds.- I know they freak out and worry some people, but I personally love fully-automated stuff. I know that right now several companies are working on the self-driving car. This would be really cool, and of the many benefits to this, one big one would be traffic safety and a reduction of all sorts of wrecks and preventable accidents. The only way I can see it working though is if everyone adopts the concept, and these cars don't have to try and share the road with people that will insist on driving themselves. But I'm not thinking about what could benefit me in a few years. I'm thinking about what could benefit me RIGHT NOW! After having just laundered and spent time making the bed, I can, with complete conviction, (imagine at this point that I am looking you right in the eye), say that I would unabashedly love to throw clean sheets on the bed and have them stretch themselves out, and tuck themselves in.

Self-Driving Screw Tops.- I know that I have written about my battle with the screw lid before, but at the danger of repeating myself, I feel that this particular topic cannot be overstressed. The screw top invokes in me a reaction that is much like Superman's response to Kryptonite. My legs go weak,(weaker), my vision blurs,(blurrier), and I get shaky,(shakier). Seriously, it takes me so long to accomplish this task that I could start to put a lid on a bottle around Valentine's Day and walk into the living room after a victorious struggle, only to find my family decorating the Christmas Tree! Okay, so that's a bit of a slight exaggeration....I would more likely find the family putting up Thanksgiving decorations. Really, it's not just the placing of the cap onto the bottle, which is also a problem not to be overlooked, it's the screwing of the cap so that all the grooves line up and the lid is sitting straight. Not at some kind of forty-five-degree angle, which is what usually happens during the first dozen attempts. Whenever I remove the angled lid so that I can take another run at it, I will always lose my grip and drop it. The worst is when I've dropped it for the fourth time and it rolls under the hutch in my kitchen. Well, then I just have to prepare for an extended journey down to the floor to retrieve the cap. It is a huge process, and all I am saying is that it would be nice if I could just hold the lid several inches from the bottle, it would attach itself, and begin to rotate its own way down the neck. That's all I'm asking...would it be so hard for someone to invent this?

Speaking of automated items, that leads to the last item that I would like to mention:

The Self-Removed Tamper-Proof Seal.- I realize that these are used for public safety, and they do give us a piece of mind to see the seal and know that no one else has been using our items in any way. But come on, the struggle to remove one has become, for me, a time to reflect upon my life and come to terms with whether or not I really need this particular item in the first place. I usually end up using my teeth, and that doesn't help either because I end up just getting a nasty paper/foil taste in my mouth and I give up. Maybe if the manufacturers would make the safety seal taste like the product hidden behind the armored covering it would act as a motivator. I'd be like," Hey, that's pretty good, I'm gonna keep going!" I'd then be motivated to do whatever it takes to get past the security barrier, instead of moving on to easier pickings. The way I see this happening is to have all products with a safety seal tied to an internal locking mechanism. Only when the item has been purchased, the bar-code has been scanned, and the item has left the store will it finally unseal itself.

I could keep going because there are literately hundreds of banes to my existence. It's funny, but I never noticed all the things I encounter that were never a problem until.....well, until they became a problem. But like always I find the best therapy to get me through is my ability and willingness to keep laughing at these things, and my attempts to overcome them.

Zipper Wars And The Great Power Cord Rebellion

here is a link to the audio version, in case you would rather listen to this blog: www.youtube.com/watch?v=Rvq9xIe8iYA

There have always been skirmishes, conflicts, and battles, but THIS is a war. There is nothing as frustrating to me as a stubbornly entrenched zipper. On the surface it looks to be an easy ordeal to go from an open zipper to a closed zipper, but therein lies the problem.  For a person who doesn't have steady hands,  just successfully getting the two sides lined up together can be a major undertaking. After trying to get the little tine into the little receptacle five or six times, I look around for the hidden camera. I just hope I don't turn on the television one day and see some poor, sad little man comically struggling with his zipper, only to realize after laughing hysterically that the man on t.v., is in actuality, me!

Sometimes I wonder if the zipper was an invention that came from the mind of the person who invented the gag birthday candles that never go out no matter how many times you blow them. Just when you think you have them out they come back to life. As soon as I think I have the zipper beaten into submission and on it's knees it comes back to life and shows me that it still has some fight in it and a few tricks up it's sleeve to make my life difficult. This is usually shown by the two halves separating as fast as I can join them together because they were not lined up correctly, or the zipper will grab a piece of wayward fabric and shove it into the path of the closing teeth, much like the villain who ties the heroin to the train tracks, which will always result in the halt of any continuation of forward progress. I can almost hear the evil little zipper chuckling to its self, all the while twisting it's little black curly mustache, as I tug and pull to free the fabric so the forward momentum can continue.  Even after the zipper has been conquered and successfully taken all the way to the end, it still won't admit defeat and give up the fight, because zipping it up is only a partial victory. For example, I have a leather jacket, and all the zippers on it seem to think it's funny to twist the little pull handles so they are hanging in a direction that makes unzipping any of the pockets impossible. If I need to retrieve anything from these particular pockets I need to first excerpt myself and lose a pound of sweat before being allowed to gain entrance, because they've bound themselves into an impossible angle. It might be easier if I could just give a loud verbal command, like,"Open sesame"!

Now, before you suggest anything, let me just say that I know there are easier ways to go about this, and as much as possible I buy things with snaps, buttons, and/or velcro. But all of these, despite their levels of convenience, seem to always come with their own unique attitudes and special problems.

Cords are another thing that I have issues with.  If they are not jumping up off the floor to try and trip me as I am walking by, or stepping over them,  they are forever wrapping themselves around my ankles. I really don't understand their problem because I treat them nicely. I never harshly yank them out of the wall sockets or use them for a quick pick-up game of jump rope. I always keep them nice and straight and never twisted or allow them to become kinked. And I always wrap them up properly and store them with the equipment when I am done. But for some reason they have decided that this is not good enough and over the last several years they have begun to seriously miss-behave. I feel like I need to be a snake charmer just to vacuum my carpet. I'm not sure, but I think the problem may be that they overheard me talking about how nice it would be to have battery powered equipment. I think they feel their time is limited. And maybe it is.... but what do I know, it's just a theory!

Yes I know I could make my life a lot easier by just simply avoiding zippers and cords. But where is the adventure in that and where is the challenge, or fun?  Sure my poor coordination has made lots of things more challenging and hard to do, but to simply give up on everything because it has become difficult would mean to admit defeat and that I will never do. It just means that as my condition progresses I need to continually rethink the obstacles that lay before me, and draw up new battle plans.



























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Should You Choose To Accept This Mission.

here is a link to the audio version, in case you would rather listen to this blog:www.youtube.com/watch?v=jg_jTJP9dBU

As I grew up and experienced the sometimes wonderful, and at other times completely baffling world of childhood, I quickly realized that I was not as physically skilled as the other kids. This is an area that I have already extensively covered in previous writings, so I will not re-visit the subject. However, one of the ways in which I DID resemble all the other children was in my love for television. I grew up spending three solid hours most Saturday mornings sitting in front of the tube in my pajamas, eating cold cereal, and watching Bugs Bunny elude Elmer Fudd, Scooby Doo solve mysteries as he cruised around in the Mystery Van, and Johnny Quest go on all sorts of adventures. Those were the days that were ruled by t.v. networks, and our available choices were limited to five channels. One of those was a public broadcasting station, which catered mostly to adults, so in my world there really were only four channels. That is until the day that I discovered that the public station showed Monty Python every Saturday night at 11 p.m. Then my world expanded and it was back to having FIVE viable channels.

Really though, the other four networks showed most of everything that my young mind could want. From The Wonderful World Of Disney, and Gilligan's Island, to The Six Million Dollar Man, and Mission Impossible. I loved Mission Impossible, and when I wasn't pretending to be Steve Austin, a man barely alive who was rebuilt and could now pull a cement-encrusted metal pole out of the ground and throw it like a paper javelin, I was accepting the newest mission from my superiors because my team and I were the only ones who could get the job done. I was always on the lookout for the next tape recorder, the one that would self destruct after a few seconds, or any other method that my boss would choose to relay my instructions. These things only ever existed in my make-believe world, and I never did receive the outside summons to embark on any clandestine missions, impossible or not.

I never received any external summons, but thirteen years ago at the age of thirty eight, I did accept delivery of an internal call to a version of Mission Impossible, named Ataxia Impossible. Actually, I didn't so much as accept the delivery as I had it thrust upon me, and over these last few years it has been like watching a movie. A movie where the main character will be pardoned and not sent back to prison if he will just successfully perform a task that seemingly only he can perform. You know the kind of story that I'm referring to. There is always lot's of action, and usually at least once or twice things will really look bleak for the main character, but in the end everything comes together in a neat little package and the hero gets his pardon and lives happily ever after. I accept the missions, but I never get the pardon.

An aspect of the Mission Impossible show that kept me enthralled as a kid were all the gadgets that the team got to use. My favorite would have to be the rubber masks that they made. When they put these disguises on, they transformed themselves into another person, and literally could, and would, fool anybody. Unfortunately, the missions I am called on to engage in do not require me to do, or perform, the same kind of visual trickery, but to just look like my boring self. I am a master at gaining weight, but sadly, this is not a skill that will help me complete a tough assignment. Tough ones, like the weekly cutting of my nails, shaping my beard with an electric trimmer and unstable hands, or brushing my teeth with a tool that could either be used to clean my teeth or continually prod and jab my gums are unfortunately not currently useful to anyone else but me. It's too bad, and it makes me feel like having a snack.....maybe even three.

I am considered to always be on active duty, and as such, can be presented with a mission at any time of the day or night. Usually my day is made up of dozens of operations, ranging from big to small. Just one example of a task that I have been internally called on to do in the past, and probably will be again in the future, is to jump up and answer the door. The mission is presented to me in a way, that should I accept,  may lead to a stubbed toe, a bruised shoulder or hip from walking into things, or a out-of-control dance followed by an epic fall. I could of course refuse to accept these missions that are presented to me throughout the day. But to do so would mean that I would absolutely do nothing. That's not an option. I just need to think about what I am doing, move slowly and with purpose, and modify how I do things while achieving the same results.

It's not Ataxia Impossible, it's Ataxia Possible, so never give up my friends. As always, I wish you all the best.

A Case Of Insufficient Efficiency.

here is a link to the audio version, in case you would rather listen to this blog: www.youtube.com/watch?v=DtqM3aE7OWo

A very accurate, and descriptive way, to explain my current standing with Ataxia, (no pun intended....unless you found that funny of course, in that case it was totally intentional), is to say that I have become double minded. The popular saying would suggest that this is a good thing, that two minds are better than one. In my case? No, not so much. The presence of more than one mind might actually work well if the two existing in my body were synchronized. The problem, of course, is that the two that I am dealing with just simply cannot seem to accomplish this. They both think that they are the one calling all the shots, and taking the lead. This situation never seems to have a happy ending, and a lot of innocents suffer, namely the rest of my body.

One of the minds that I am referring to is actually located in uh, well....in my mind. You know, the netherworld that is located between my ears. Experience will tell us that this is the main one, and as such, is the one making all the executive decisions for the rest of the body. What is decided, and what this mind says, is what goes and usually there is absolutely no argument from the other due-paying members who belong to the organization. Everybody knows that the one sitting at the top is in charge, and this is a system that has always worked out well. At least, it always seemed to for me, until another mind moved in and decided that it knew better. I am referring to the rebellious little mind that has established residency in my feet, and has as of late been trying to declare it's independence by refusing to work in tandem with the guy up top. Because of this, what usually happens is that when an order comes from above that indicates that everyone should proceed forward, everybody from the waist up will begin to immediately respond and begin the process of progression. But the feet will hesitate, feigning innocence, acting like they had never received the order. This causes a slight lurching effect and a loss of balance. The feet come off looking rather defiant, and lazy, which is causing dissension in the ranks. It also has begun to make the head guy appear unprofessional and completely out of control.

Not all the blame can be laid at the feet of the feet however. They did allow another mind to move in, which is causing quite a bit of confusion and unrest,  sure that's true. No one is disputing this point, but like most everything else, there is a second side to the story. It seems the feet were responding to a situation the only way they felt that they could. Apparently there is a smaller office behind the main mind's office that is a control room of sorts. The way it was explained to me is that the job of this little office is to translate orders from the main office, and then to send them out as mandates to the other departments. The problem that has developed is that the person in charge of the little office and insuring that it runs smoothly has become unstable and highly unreliable. He calls in sick half the time, and when he does show up....well, he's not all there if you know what I mean. The lights are on but nobody's home. And I can't fire him. Believe me, I've looked into it but he 's got some kind of iron-clad contract. I don't know, it all seems like internal politics to me. Besides,  even if I could figure out a way to show him the door, the organization in charge of the whole mess would probably want to fill the vacancy in house by promoting from within. As incompetent as this guy is, there is no one else currently employed by this agency who is remotely qualified for the position. I could easily wind up with a bigger mess than I've got right now, so I guess I will just have to suck it up, put a smile on my face, and be reconciled to a body that is riddled with unrest and double-minded inefficiency

Things might actually go smoother if I would just let the feet make the decision when to go forward. I will only move when they decide that it is a good idea. I'm thinking though that I shouldn't let the feet know that in this area, and only this area, they are in charge. I wouldn't want them to get a big head.

Now That 's Just Crazy!

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

It continually amazes me to see just where the next inspiration for my general musings will come from. I started this blog spelling out my history, and bringing everyone up to the point of my current life. After all, right from the very beginning the blog was titled, "My Life", and I kind of had a vague inkling that naming my writings this way, would sort of dictate what the content would be about. With every piece that I have written since that first one, I have stuck with only the subjects that are real in my life. I have written about only those things which I have, or am currently, dealing with. But I have done so with the knowledge that eventually I may run this well dry, and I remain firm in the conviction that I will not write about any subjects that are not part of my personal experience with Ataxia. In fact, usually several days after my most recent posting I will think to myself that the recent blog was most likely my last. But I remind myself that from very early on a pattern emerged, and that if I will just slow down, be patient, and try not to force anything, that something will eventually present itself in my life that could be easily transformed into the next blog. Such was the case this morning.

I have heard before that one of the significant definitions of insanity is doing the same thing over and over again when there cannot possibly be more than one result, but expecting a different outcome every time anyway. I discovered myself thinking about this definition yet again this morning as I slipped in the kitchen because I was wearing only socks on the linoleum floor. I guess that I am going to have to include probable insanity to my personal description of Ataxia when asked what it is that I have. Am I suggesting that people without Ataxia can run around in their stocking feet and never slip? No, what I am saying is that the slipping in itself is not the issue, it is the aftermath in which I try to regain my equilibrium where most of the problems present themselves. The reason for the probable insanity definition as applied to my life is because I have done the same thing multiple times this week and it always ends the same. I tell myself that I simply cannot continue to walk into the kitchen in only my socks, but that I need to remember to wear my slippers. By the way, just a little aside here, but have you ever wondered why they are called slippers? Shouldn't they be called non-skidders, zero-slips, or anti-skidding devices? I often wonder about that kind of thing. Anyway, the point that I am trying to make, (some may call this an act of insanity), is that a lot of things are changing for me physically and I can't keep approaching these every day situations in my life like I used to, five, ten, or even one year ago.

For example, is it so crazy to want to simply get out of bed at three a.m. to check the plumbing in the bathroom without the drama of shaky legs, and feeling like I am trying to stay on my feet in a ninety-mile an hour cross wind? Well, the answer for me is yes.....yes it is crazy. Because I kept trying it, hoping that the shaky legs would be calm, and that the wind was gone. But they weren't, and I had to adapt. So I just simply started to wet the bed. No, not really. Melissa suggested that I need to set up my walker and place it next to my side of the bed, so that I can easily reach it and use it at night.

My Ataxia has been about adaption. It has been, and will continue to be, about redefining myself in the face of that which seems to be constantly changing. It is about fighting to keep my abilities, and to stay as independent as possible. But it is also just as much about realizing that my stubbornness can also lead me astray. I have to remember the definition of insanity and let go of the things which are no longer possible for me, or to be creative and find new ways to approach old problems and everyday obstacles.

Am I crazy?

Clowning Around In The Circus That Is Ataxia

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

This whole Ataxia-thing is like the performance of a major balancing act, which is completely the opposite of what will typically come to mind when one hears the term balancing act. Most of us think of the thrilling execution of a circus feat, done inside a large circular canvas tent. The act that involves an acrobat walking across a taunt rope that is suspended between two platforms, and is somewhere between fifteen feet and a mile off the ground. They usually have a long, weighted pole that helps them stay balanced while they inch along, trying not to stumble and fall. But, if they do happen to lose their balance, they know that there is a large safety net stretched several feet above the ground that will catch them long before they would make an unsuccessful re-entry into the earth's atmosphere and splash down. The balancing pole that I use is really more commonly known as a walking stick, and the slender rope that I am balancing on is.....well, it's pretty much the entire surface of the flat ground. And, unfortunately, there is no safety net that can be set up and stretched lower than this. It leaves me feeling as if I am perched and left to balance right on the edge.

Maybe, instead of using a walking stick, I should be using a long weighted pole. I don't see a problem with this, and I would think that for the most part, people would be agreeable to the idea of me walking around with a fifteen foot pole jutting out on either side. I imagine that once they saw and understood that I was doing this for balance that they would start clapping and break into wild cheering. Someone in the crowd might even start roasting peanuts, making cotton candy, and popping popcorn. There would probably also be several people in the audience, as it now has come to be known, who would be holding their breath, thinking that my next shaky step could very easily be the one that sends me hurtling down several feet to a bone-jarring crash. I suppose it is a good thing that I never aspired to run off with the circus as a kid, although I probably could have had a lucrative career as Clumsy The Clown, where everything I try ends up in an epic comedic disaster.

So, if it is not a high wire act that I am talking about, then what is the balancing act that I am referring to? It is the balancing chord that needed to be struck between sitting and standing, between activity and rest. I need to move my muscles frequently, and remain active enough so that my body does not begin to freeze up on me, making the abilities I still have lessen. Too much activity, however, and I become tired and more vulnerable to injury. It is a constant battle that is fought daily, and I have had to learn to listen harder to my body and pay closer attention to my limitations. In a lot of ways, the balancing act in and of itself has become a balancing act.  It reminds me in a very similar way to the effect you get when one mirror is reflecting another and it appears as if there are an infinite number of windows, all showing the exact same reality. I am not trying to over-complicate things, but the reason I say this is because, just as multiple reflections of the same object seems to suggest a certain amount of redundancy, so does the need to balance my balancing act. You could also say that, in many ways, the tightrope that I venture out onto daily, as I strive to safely move from one platform to another, is the narrow space that exists between activity and injury.

Another act that I perform on a daily basis, but which is nowhere near good enough to execute before a paying audience or in any capacity under the Circus Big Top, is juggling. Most of the time when I decide to start a project or a chore around the house I am juggling as to just exactly what type of mess that it will turn out to be. Instead of three rubber balls,or bowling pins, I juggle whether or not it will turn out to be just a mess, a rather large mess, or a Federally-declared disaster sight. At this point the juggling starts to bare a close resemblance to gambling. Jambling, if you will. Apparently I have just made up a new word, and look forward to being able to use it in everyday conversation. "What are you going to do today?' "Oh, probably not much, just got a little jambling to do."

And then, there always seems to be that one circus performer who always manages to insert their head into the mouth of a lion. The thing is, that whenever I have witnessed this seemingly brave show of confidence, the one doing the sticking in-of-the-head-thing doesn't actually look that assured. The lion of course doesn't look like this is a bad idea, I mean, really, how much easier could feeding time get?  But no matter what kind of brave front the human performer in this act tries to put on, you can still see the lack of confidence in their eyes. This must be the same lack of assurance that I have in my eyes when I approach stairs that I have to go down, tight places, or uneven walking spaces, because after my family asks me if I am okay in a particular situation, and I reply that I am, they will reach out and lay a steadying hand on me anyway. I suppose they have witnessed too many times when I will say I'm fine, and then stumble or fall. I am very thankful for those who hold my hand and support me, and would like to dedicate this blog to my warm and loving wife, and immediate family members who have helped me along this journey. Thank-you, I know it hasn't been easy, and I know there have been several frustrations over the last thirteen years. I just wish that somehow  I could keep my head out of the proverbial lion's mouth.

Some Things Bare Repeating.

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



I started writing this blog as a way to share my personal experiences and struggles with Ataxia everyday. I have joked about various situations that have come up, and referred to my handicap, among other ways, as an unwanted guest. I have said before that the reason that I try to find humor in my reality is so that I won't find the ugliness. I laugh, to keep from crying, and I try to stay on the positive side so that I won't stumble into the negative. With that being said, I also have to acknowledge that there are still days of intense frustration, anger, and an almost overwhelming sadness. When this happens, and I find myself in that place, I remind myself of some of the things which I have written in the past. I write with complete conviction, but also with the knowledge that along the way I am also learning how to live a life that has been physically compromised. And so I went back to an earlier writing, making the connection again, both with where I'd been, and where I am right now. It once more gave me insight and encouragement. It is my hope that it does for you as well. The following are the four ways in which I have come to look at, and live with, my Ataxia and again I would like to share them with you.

1. Acceptance.  I was diagnosed thirteen years ago at the age of 38. It came as quite a shock, and although I acknowledged that the Doctor was talking to me, the whole thing had a nightmarish quality to it. Honestly, I think I lived in denial for quite a while. I would explain to family and friends what Spinocerebellar Ataxia was and talk about my MRI openly, and on the outside I looked like I was taking it well, but inside I was a jumble of raging emotions. Anger, frustration, sadness, and confusion. I really just wanted everything to be like I had never even gotten the news and continued to try and do everything on my own.  But when I began to see the changes in myself, that all I was really doing was making things harder for myself and others, and even setting myself up for unnecessary injuries, that was when I had to stop and reevaluate. I gave myself permission to be who I am and to embrace the opportunities I had before me, that were only there because of my Ataxia.

2. Attitude.  Once I accepted the reality of my Ataxia, I quickly made the connection to my disposition. It was one thing to understand my limitations but it was quite another to be happy IN SPITE OF the current physical reality. I say physical reality because that is what it is. You are free to believe what you want to believe, my friends, but I believe that there is a Spiritual reality where Ataxia will no longer be a part of me. In fact, it is largely the reason why I can laugh in the face of adversity and joke about my daily struggles. The other reasons are because laughter keeps me from crying, and also helps me from making the loved ones around me miserable. I will not live a life that is embittered by struggles, or otherwise. I don't always succeed at having and maintaining a positive attitude, but I will tell you that when I do, my limitations are a little more bearable to live with.

3. Exercise. After my diagnosis in 2003, the one thing I discovered was that it was very important that I kept moving. My motto soon became," if I don't use it, I'll lose it'.  For the first nine years after my diagnosis I worked full-time so constant movement and exercise weren't a problem. But, I lost that job in 2012, due to the advancement of Ataxia, and as I have stated in an earlier blog, the concern became what I would do and how I would keep from degenerating faster. The job that I was doing at the time was physically demanding and physically wiping me out but at least it was providing constant exercise. So at that point I began a daily walking regime. I continued doing as many things around the house as possible and also began to volunteer at different places as a way to stay active. My motto is still the same and I continue to do whatever I can and will keep at it until I can't do it anymore.

4. Support. I cannot accurately describe to you how big of a role this has played in my life or how vital I believe support to be. For the first nine years of my personal struggle with Ataxia I faced it with the love and support of family, but I did not know anyone else like me. When I reached out and found a support group, I was amazed and it really felt good to be with other people who knew my struggles, not because they were sympathizing with me, but because they were living in the same reality as I was. It was an inspiring time for me and I began to seek out any avenue that I could that would put me in touch with others whose struggle is like mine. I now have friends all over, not just the states, but the world. I can't say for sure why this helps, but somehow it just does. It also is a very encouraging thing to be able to ask a question about your symptoms, or about various medicines, or any other general question that may come up in your own battle, and receive advice, encouragement, and/or support, sometimes in a humorous way. And the beauty of it all is that there is never a dumb question. Just friendship and unity in the knowledge that we all have had our lives disrupted by a variation of the same unwanted guest. Any advice I have for someone struggling would be to find a source for support.

As I continue to battle, I do so while striving to live a life that on hand is based in reality, but on the other is not stopped or discouraged by my physical trials. Each day brings with it a new chance to live a life that is grounded in the positive. A new chance to take stock of your surroundings and make a choice to focus on the good things in your life. This is what I choose to do, despite the physical challenges that Ataxia brings. I invite you to live this kind of life also. Peace, my friends.

Our struggle is not easy my friends, but I want to encourage you all, whatever stage you're at to continue to fight, grab any hope you can and hang on, and know that you are not alone.  My best to all of you.