New Zealand? I'll try to explain

When I consider that this is likely my last "active" vacation, I quickly realize there is no place on earth better to spend it than here, and no one better to be my guide than Rachel. We have done so much, completely stress free, and for me, largely guilt free that I find a Utopian niche here I never thought existed- anywhere. Words cannot describe (though I shall mightily try) this country. Once I get home on my big keyboard, I will post much beyond pics and accolades about what my experience has been. For now, however, all you get is a teaser- Back home, people, towns, community lay upon the land and create their environment as a stamp on an envelope directs a letter to its chosen destination. In New Zealand, the land rules. The contours and environments already exist and the people compose their lives to conform with the topography. More simply put, the obvious is that the earth here rules and we our its guests. I will elaborate on this subject at a later date.
Of the days here: today alone, we took a helicopter ride over a glacier, landed on 1,000 feet of snow, got out, (I nearly fell out), walked around at the top of the world, took pictures, video (later), cut back to Fox Glacier (google it), all before breakfast, which consisted of my first "good" cup of Americana coffee, toast and marmalade. We then started south to Wanaka via a twisty turn highway replete with a dozen single lane bridges. We stopped for no less than three waterfalls, which can be seen in upcoming photo posts. Snow capped mountains, glacier tracks, mountainside waterfalls inaccessible to us, half million acre lakes- two of them, one on our left, one on our right- rivers so powerful and rock strewn as to be uncrossable on foot and unnavigable by raft, kayak or canoe; cows, sheep, lichen covered wooden fence posts for miles, birds of a different colour, strange trees, palms in the oddest places, ferns, primordial woods, equatorial jungle, blue skies, rain and rainbows, massive rock shallows, creeks, runoffs, green and gold-not of this world. Keep in mind, that's just today. More and more and more to come. Strewn here are a few pics to whet your appetite.

We're In Auckland!

This will be brief- we are in Auckland, New Zealand, safe and sound; I've eaten a burger with onion, tomato, lettuce, beetroot and egg and it was delicious.
Wait, this will extend! I am back writing after being here a few days and experiencing a few wonders, including but not limited to wondering why renting a car here is by most evaluations a dangerous undertaking. You must know that when you rent here, your vehicle will cost north of $50 a day, carry at least 10 years of use, carry at least 150 thousand kilometers, a jack soaking in water and rusty beyond use, a little screwdriver, pliers and a couple open end wrenches that don't fit anything. Some rust, some dents, in all.....better days were around 2003. Blow a tire in an unincorporated area 4 hours north of Auckland and find yourselves ass to traffic trying to lift the car with a dimestore implement wielded by a one armed balance challenged ALS suffering dad who falls down on the rough pavement, looses it, starts crying at his own ineptitude while his daughter picks up the task, rescued by a crocodile Dundee lookalike ten years dads senior and you get the gist of one of our adventures. Never underestimate the kindness of strangers. Ask yourselves, would you be so kind? Before this, probably not. Now? I would search out the unfortunates, but could do no more than say "If you were broken down in New Zealand, there was this guy, Greg.........."
I can't type so well on this net book, so posts will be shorter. This one included.

New Zealand bound!

Yes, finally, just in time, on a roll, can't wait! Nineteen hours in coach seems a small price to pay for a trip not only "down under", but a little to the East. Kiwis and beetroot burgers, waterfalls and hostels (is it coincidence that "hostel" and hostile resemble one another?). Who cares, say I. Let it be known that even my depleted state finds me up to any sightseeing task I choose to perform. I am, as I've said before, a Weeble; however if I were to tumble, I plan to avoid any myriad of abyssi (multiple abysses) found in the vicinity. The Hobbit is being filmed on the south island, and I plan to walk on, rather hobbled, collect a fat paycheck and squander it all on a long shot wager on a second rate rugby team competing in the Worlds. That, or I stand behind a fence with the rest of the commoners and hope for a glimpse of a famous person. Probably the latter.
These days, good comes sprinkled with bad; sometimes bad is the cake and the frosting is good. On occasion, I get no frosting whatsoever. Everything is a mixed bag. I feel good about many things, then I settle in on an awareness not to be ignored. I have faith in my efforts and I play the optimist as well as I can while skewering any thoughts of the future,- that of my family, my friends- flinging them away. It does no good to anticipate anything that contains negative energy. It does no good to play "Pollyanna" either. Each day- more accurately, each morning- I begin with self assessment, determined to find improvement, satisfied with stasis. Mostly, I find tiny new changes. Some cannot be related to the progress of ALS, but as a result of my symptoms. My arm is travelling toward uselessness through deterioration, causing discomfort for the first time. My muscular decomposition puts a strain on ligaments, joints. I feel pain in my fingers, my shoulder. If I position my arm correctly, I can initiate muscle pulls that must be manually manipulated to be relieved.
My legs are beginning to give way. I've retained most of my leg strength so far, but my motor neuron decay has affected muscle signal to the point where too much information is being passed, and as a result I respond in a sluggish manner, so I walk wrong. Add to this the ever looming muscle degeneration, insidiously manifesting itself here and there, and it becomes easier to look forward with trepidation. I will, to be sure, walk until I fall, then crawl a distance before I hoist myself into a wheeled vehicle. I only wish I could be sure this end game of my mobility can be staved off until I finish the legions of activities I have, and will plan that require self propelled mobility. When (if) it comes to my entering a rolling device, rest assured I will be "hell on wheels". Once I get past the humiliation, I will jump high onto the bandwagon of entitlement. Give me my Medicare, Give me my Social Security Disability Income, give me my handicap placard, give me my early boarding privilege, my stomach tube, my catheter, my respirator, my splints, my pain meds, my antidepressants, the prayer, the mind/body work, the acupuncture, massage, supplements, ibuprofen, baby chewable aspirin, the automatic doors, the motorized carts at Schnucks, the percocet, vicadin, the ramps, stair lifts. I am entitled. I will take it all. I would also trade the entire package to not have ALS, an option with rapidly diminishing odds. So................ wait for me to hobble up and soak up my multifaceted, multi emotional musings, though not Amusing, as I experience the rush of a lifetime.
In closing, at present, I am eating my cake, the icing, I lick the plate clean and savor a great Kiwi coffee as I roll to the south and fill a bucket with a dream vacation with Rachel. Story to come, pics galore. See ya.

(Regretfully), back to reality

After a fun filled weekend in Orlando and a great hiatus in Indiana, prior to two weeks of escape to the southern hemisphere (a first for me, I hope not to be overly mesmerised by the fact water spins differently in toilet bowls), I'm a little overwhelmed with the number of duties and activities filling these five days. I have at least two spreadsheets to initiate: one for a work project, one for an inventory to include household belongings potentially for sale or redistribution, and possibly one for tool and equipment inventory. If I complete a couple of these, I'll feel more comfortable with the rest of the week. I'm constantly reminded of the need to reduce stress in order to "relax" symptoms only to find "life" is synonymous with stress and continually rears its head as a reality to be dealt with. I'm not easily persuaded to relinquish responsibility- though I've moved steadily, begrudgedly toward curtained tranquility- finding my fight on two fronts as apposed to one.
The outside consensus seems to be that the very fight, the very battle mindset I hold so dear may be the instigator within me preventing progress against my disease. My natural reaction to an onslaught is to steel up, armor up and attack. I'm no pacifist. I know violence begets violence, but my situation indicates ALS cast the first stone. To me, if I turn the other cheek, I'm gonna get clocked. I know it's foolish to allow any opponent the first shot, but let's face it here- I got cold-cocked. I never saw this coming. Whether my lifestyle choices assembled the pieces to complete my ALS puzzle or not is inconsequential today. I won't take blame for my predicament. I won't lay blame for my predicament. If I point a finger at myself or others, I'm wasting time and energy looking backward. The bell has rung. My training throughout these last months has taken on a different tone. My stress level is lower. My mood is apprehensive yet hopeful. I'm loose. I see that feints and elusive movements will better service me than head butts and straight line aggression. Be warned though, simply chanting peace and love and heal does not negate my enemy. State of mind is important, and I must temper my temper with happy thoughts, ever mindful of the degeneration continuing each day within me. Simply closing my eyes will certainly leave me blind to the job at hand. I can only close one, with the other ever watchful and aware. This disease was established as an inside job. I close the one to see inward. I open the other to deal with every day life. Terms such as "think healing thoughts" make as much sense to me as "imagine imagination". While I believe thoughts are things, non specific thought has a non specific form, and I can't picture it. I need tangibility. I need specifics. I can, and have, reduced stress in my life, but the reality is, even if I lived in a Utopian society, ALS would represent a level of stress impossible to eliminate. The term "living with ALS" turns my stomach. The MDA and the ALS Association often use this phrase in their literature. To me it stinks of resignation. It implies that I have ALS, and I need to accept its course. The literature largely deals with management. Maintenance. Equipment. Eventually, a coffin. Until The ALS Association or the MDA dedicate a monthly to the (albeit few) success stories involving cured patients, their methods and their self-assessments, I have no use for them. Give me something new. Give me something different. If anyone out there associated with these guys is reading my blog, let it be known that if I were to be given a forum to express my angle on all this, I would extensively research my piece, limit it to a thousand words and gladly donate it for publication at no fee. Let's study the fringe. The mainstream wields blinders and has developed tunnel vision. Let's look around. Let's see the peripheral. Let's scan the outback. I need answers. I'm on a time line.

An all too brief respite

Last night we arrived home from an overnighter in Indiana that ranks at the top of our list as the most relaxing, medicinal, enjoyable short trips we have ever made. What did we do? Drank beer, melded with family, talked a lot, ate awesome food, rekindled relationships and bolstered others, turned acquaintances into friends, all throughout finding peace and tranquility carrying the day. Great for me, great for Amy. I feel we needed to regenerate. We did. I feel we needed a brief escape. We got out. Now I need to prepare, both physically and mentally, for New Zealand. Rachel and I board a plane in Chicago Monday night, fly 4-1/2 hours to LA, then 13-1/2 hours to Auckland, NZ. I hope to post and pic from down under. Between now and then, look for an update or two on my condition, my therapy and my attitude. I hope to see some of you at Crusens this Saturday.Thanks for looking in on me, I'm doing OK.

Off to Indiana, Though I Remind..........

This morning Amy and I drive to Auburn, Indiana to visit my Aunt Jeannie and Uncle Harley for a short time, expecting to also see my Uncle Wayne from Colorado, who couldn't stay away from his 60Th high school reunion in Woodstock, Illinois. He was not allowed in the Midwest without a segue to Indiana as well. An added bonus will find my cousin Jody flying in to visit, then accompanying my uncle back home. You see, my uncle Wayne refuses to board an aircraft unless he happens to be the pilot, so he drives. As a consequence to this trip, my keyboard will remain idle til Tues.
I am going to break my usual protocol and plug a couple of events coming up this weekend. I must let you know that a very important part of my therapy includes my kids. Sarah and Tim and Alex and Isaac are on my mind every day. Their very existence extends mine. I expect to end up closer to them as the months go by. Rachel finally got her hiney home and is with us as she and I prepare for our two week journey to New Zealand. We leave Sept. 19. She will be the emotional crutch I've been looking for since March.
Nick provides me with a lift every time he comes to Peoria or I visit Chicago. He sometimes has trouble knowing how to help me, but I told him last week that when I see him living the dream, feeding his passion through music, he loads me with pride and wonder. Pride is not a sin in this context and wonder is what forces the question "Where did he find musical ability drawing from our gene pools?" Nick on stage fulfills my fantasies by proxy.
Which brings me to my shameless promotion: This weekend, Nick will be joined by American Idol season 9 Hollywood contestant Paige DeChausse. On Friday, Nick and Paige perform a duo act in Bloomington at Theaters Cool from about 8pm to about 12. Saturday night, Nick's band, DriveTrain, performs at 9pm at Crusens on War Memorial Drive, with Paige joining them as a special guest. I will be attending both events purely for medicinal purposes, but would like to see a big crowd at each event in order to draw some life out of the crowd and infuse it with my own. If you can be there, I would consider it an honor to shake your hand and hug your wife.

Can't Sleep, So I Post

It is two AM. I am not restless, I don't feel tired and I'm not frustrated at the fact. My mind is not on overload. I simply had to pee, and now I'm fulfilling another, newly acquired biological need. I write. More accurately, I peck. Surprisingly, with the middle finger of each hand, I do type. My left hand is largely non responsive, yet my middle finger holds it's rigidity well enough to press each key. If this last operational digit goes slack, I will simply tape a Popsicle stick to it and continue on. Life is full of adjustments, these are mine, among others.
I spend a lot of time describing my mental journey. I collect my musings by the bucket load, hoard them within my head and spill them out the door onto the pages of this blog. Many of my thoughts provide proof of how aimless I am at times. Many more give me hope that there is a way to overcome my obstacles. I've used the term "fight" often enough to give the impression I am in a war, but the truth is more complex. If I "war", it is really a battle within myself, and the result of such finds me as the only casualty. ALS is in me. My body fails to eject it because it does not know how. If I stab at the heart of ALS, I stab at my own, and by this method I cannot survive. I must overcome by other means.
In cold illustration, of the 40,000 or so ALS sufferers in the United States today, half will be dead within a couple years of their diagnosis. Statistics on the rest vary greatly, but the likelihood of any of them being cured by any means is astronomically remote. Keep in mind, all of them suffer varying degrees of debilitation. All of us.
There are occasions of remissions, there are occasions of spontaneous healing but they are very rare, especially in this case, here, of a very rare disease. My research shows a much higher remission percentage in cancer patients.
This does not mean there is no way. I believe there is a solution for me, however elusive. For others. I'm convinced that faith or will play little part in a cure. If Divine intervention were a singular tool to recovery, I am dismayed at the lack of it's effectiveness as defined by how few have recovered through such means. The bottom line here is that a bridge must be crossed in order to facilitate a biological change within the body. This means not only must I develop a concept within my mind, I must choose a concept that can correct the problem and bridge the gap to my subconscious to make things happen. No easy task, otherwise the need for pharmaceuticals would be vastly decreased.
I can hear you saying "how the hell do you accomplish such a task". More likely you're saying "bulls***" to yourself. That's OK. You have just as much of a chance at being right as I. However, you are not in my position and you can afford to be skeptical or rationalize me as desperate. I don't have any reason to worry your opinion. I don't fault anyone his position. I actually glory in the fact he isn't in mine.
Try this. I do this on a regular basis. Every day. More than once a day, in fact. I don't call it meditation, because it is not. I can, and often do, perform this act while the TV is on and someone is in the room with me. I don't close my eyes physically, because I want to see. I direct my gaze upon anything. The fireplace. A picture. The drapes. Anything static. If I concentrate, I can first be aware of everything in the room- visual, audio, smells, a breeze (if the window is open), and slowly, systematically, I eliminate all stimuli. I soon see absolutely nothing. I zone out. The best way to describe it is that in my mind's eye, I fabricate complete sensory deprivation. I also rid my mind of the plethora of thoughts that normally gather within my brain. Time has no reference here. When I am hypnotised, time has no reference. I feel this ability can give me a better understanding within myself. I hope to be able to "see behind my eyes" (a term I feel is appropriate for me). As I say, within this state of consciousness, time plays no part, and this releases constraints and apprehensions. I understand our conscious hang-up with time since it is our coping method associated to our existence. All the time in the world, as they say, is an unattainable possession. Try stepping into a different consciousness and discover how tethering our concepts of time can be. Sorry, I am off track here. My goal is to find that bridge to the controls of my subconscious. My goal is to achieve that which few, maybe none, have. Don't get me wrong, I still eat broccoli, take vitamins and try many other general remedies, I still welcome all prayers, regardless the source or belief, I still holler at myself in the mirror in an attempt to exorcise the demon ALS and I still appreciate any energy transference that might take place. All of these actions together wield great power, but I know it will take more that all this. It will take something that may open a door for the first time. I don't yet have the key, but I'm searching desperately, and if time runs short, I'll simply try to kick the sucker down.

Physical Therapy- First Visit

After a few phone calls and a few conversations I finally, yesterday, visited a physical therapist. Prior to my elevator ride to the second floor of the INI building on Randolph, I had to fill out about 10 pages of forms asking for information ranging from the expected to the bizarre. One form (this form was supplied by the INI, which has me documented as an ALS patient), asked me to check off my ailment, the offered list ranging from heart attack to dementia, Parkinson's and other, with no listing for ALS, which I had to display as "other". It's curious to me that my disease, a muscle degenerating, bilateral physically debilitating disorder would not be listed under "A" for Amyotropic Lateral Sclerosis when attending a physical therapy session. I mean, this disease whacks out, piece by piece, my arms, my legs- doesn't that scream "PT!"?
To jump ahead, upon returning home, Amy suggested I should have laughed at the paperwork and handed it back, reminding them I can't write BECAUSE I HAVE ALS! I didn't think of that so I scribbled through each page in my newly concocted Egyptian hieroglyphic design. Apparently it was good enough for them, as unintelligible as it was. Might be they don't actually read it at all.
Interestingly, many questions asked specifics involving my state of mind. Am I happy, sad, am I prone to depression, are things working out for me? These are hard questions to answer on 2 inches of space when you can't write, so I simply wrote "I have ALS. You figure it out." I am, of course, paraphrasing, sarcasm probably finds me in a bad way with their therapists. I cannot, however, remain silent, so I write something with which they can worry their brains.
Soon I was led to the elevator, learning that this was the way to the second floor (of a 2 story building, no less). I was joined by the nice receptionist lest I hit a wrong button or turn the wrong way upon arrival. I was greatly relieved when we completed the journey skyward and the doors opened up to the correct level. I even sensed my travelling partner exhaling her stress when she spied the reception desk and a handful of limpers, cane bearers and wheel chair residents. I felt for her. My empathy flowed. I only had to make this trek on the occasions I visited the clinic- she shouldered the burden many times a day. (I do exercise creative liberty when I go melodramatic, so don't accept more than a grain of my version). Real life is just too boring sometimes, so I magnify actions on occasion; be aware, though, all embellishments are rooted in real actions at all times.
The actual session of PT was half discussion and half testing. I am to blame for our hour extending to nearly two because I have researched hell out of all this stuff and I needed answers to questions likely not asked by the average guy. Examples include whether Myofascia Release would be advisable or helpful, whether strength training to less affected muscle groups would bolster such groups and help me walk better; would isometric exercises improve resistance performance in affected tissue, would ligament, tendon manipulation and extension ward off rictor or paralysis, whether muscle re-education have any positive effect, or whether muscle memory could be reinstated to combat my degeneration. I'm sure I asked more.
My PT was expert, cordial, helpful and explicit in her assessment. So many times recently, I have found that the professionals I've met with have knowledge in their specific field, but lack education in the specifics of my disease. They suggest general remedies that, through my own research, have no documented advantage for me in my fight with ALS. While PT falls under the category of symptom analysis and treatment, I was excited to hear what works to deal with my degeneration in a tangible way, with specific duties I can engage to stave off the future. I was also thrilled to hear that, while dealing with mobility issues, moving forward with my new regiment will keep me on my feet longer. I fear the day I must enlist a rolling chair, but after yesterday, I feel I can kick that sucker farther into the future. That is a good thing. I even plan to get a t shirt emblazoned with "I am a Weeble" (remember, Weebles wobble but they don't fall down).

Overload

Now that I've returned to my reality after a wonderful weekend in fantasy I must move forward in my battle with my disease. It doesn't often occur to me that I have a disease. Disease. The word conjures images of the leper colony in Papillion, of malaria stricken solders in world war two, of polio victims, of dementia sufferers..................... disease, the word, seems somehow synonymous with flesh eating viruses, bacterial infestation, cancer, with plague. I know this tends toward melodrama, but you must consider the source, me, and realize I have entirely too much time on my hands these days, and my mind wanders into the world of the macabre on occasion. Sorry. Well, not really.
Imagination for me can be both a blessing and a curse. I can procure images and film clips of Utopian existence where life is perfect and all my needs are sated, only to splice a horror of a perceived future based upon my true predicament. The term "the mind plays tricks" cannot be overstated. Consider that the mind can wreak havoc upon every aspect of our lives and soon the realization of it's powers and abilities crystallizes. We are our consciousness. We are continually assessing every waking thought. We form complex associations and draw complex conclusions without a second consideration. (ha). If I can analyze all external communication, why not internal? Why can't I assess what's going on within if I'm so adept at all my external dealings? Why couldn't I facilitate communication within myself to get to the root of my problem? Why not try? What do I have to lose? Answers to my questions certainly don't abound, so I might as well start asking myself.
I just began reading a book that Amy insists will help me understand what's really going on here. The book is entitled "The Biology of Belief". This is not a religious text, but more of a biologically themed series of concepts based on cellular communication and associated environmental affects of such communication. I haven't read much yet, and I hope I can grab at the concepts and use them for my benefit. The basic premise, for as little as I can so far determine, is that cellular interaction is not necessarily nucleus based, but rather cytoplasmically based. The community of cells pass information and develop environmentally cohesive bonds. When the environment is disrupted, as in my case with glutamate overproduction, cellular communication takes the hit. So when excessive glutamate flows over my motor neuron cells, they begin to short out, sending erratic signals to my muscles, causing fasciculations and muscular distress, eventually killing the motor neuron and rendering the corresponding muscle cell useless. This process of degeneration continues generally throughout the body, but has been known to halt without intervention. I certainly can't sit around and wait for a chance stoppage, thus I delve and I delve...... A theory of mine is that cellular memory- consider muscle memory- may be restored through the re-education of the cells. The process of glutamate production and control facilitated by certain amino acids gone awry may be restored through the environmental memory. All I need do is remind my cells of how great life was before all hell broke loose with this malfunction. This concept is no different than that within a previous post whereby I convince myself to revert to pre-ALS conditions. All of this is really just a waste of time and energy if I can't speak to myself. If I don't find a way to jump the gorge from conscious to sub- conscious, make changes and believe in them, then my path is likely carved and none of my dreams will come true. So I continue to investigate and I continue to try to see behind my eyes and I continue to salvage all thought and scatter the pieces to the puzzle. I can only hope I can beat the clock in it's assembly.
As an added bonus, I must tell you that recently I had a 14 channel hair analysis performed in order to determine what deficiencies I needed to deal with in order to help my auto immune system function at its best, only too find that all 14 channels showed me to be within the acceptable range. I also did a GI test (look it up, I'm not going into details here) which not only came back as normal, but concluded that I harbored no parasites, a rare occurrence (so I'm told). My gluten was somewhat high, but that's because I eat bread, etc. All of this points to the fact that the only thing wrong with me is ALS. One lousy ailment. One lousy disease. You'd think I could shake it. Well, I continue to try. By all means. All means.
For my next act I will be performing the trick of explaining how many seemingly simple tasks are now so difficult, and how much I enjoy developing more and more creative ways to pull up my pants with one hand. Ha Ha, joke's on me.

So, what 'bout Disney?

It coulda been a train wreck, it was not. It coulda rained, it did not. It couda been too much for a 4 year old and a 1 year old, no way Jose. My hopes were varied and hopeful. I hoped it would be dry even though the park had been drenched for periods of every day for a week or two and a recent hurricane had drenched the eastern seaboard a few days prior to our visit.I don't pretend to know much about hurricanes, but every time the southeast gets hit it rains in Peoria. So, I say we were more than lucky, we were in control. I put it out into the universe that it would not rain on our parade, and lo and behold, somebody actually listened! No rain Friday at the Magic Kingdom and no rain Saturday at the Animal Kingdom.
We rambled around the Magic Kingdom for some 12 hours, and I would have expected most 4 year olds to have melted down on spectacle overload, sugar overload or just plain walking overload long before mid afternoon, maybe slumping in an umbrella stroller designed to promote scoliosis in little kids, but Alex blew through the day fearlessly, with masterful aplomb, and with little more than an occasional whimper when standing in line for rides. Another thing- that kid rode anything he was tall enough to sneak onto. He's barely the minimum 40 inches if you include his Afro, yet he stood tall on the spooky stuff, the "In your face" scary stuff, the "real" coaster incarnated as an old coal train, and Splash Mountain, replete with a 50' drop as the finale, although he did state of this last ride "I didn't enjoy that ride at all" or something like that. Meanwhile, Isaac, just 14 months, showed no fear on the rides he could join, even getting a kick out of Buzz Lightyear (Sarah has a pic from the ride that I will post later). He even took a hit mid-afternoon, when a bee stung him on the neck. Thankfully, he shook it off and regained his composure and happy demeanor after a quick visit to first aid to make sure he wasn't going to have any problems. Tough kid.
Us oldies hit the 44" and up attractions, and we all ate quite well, surprisingly good food for an amusement park. We all stayed until they turned off the lights and gave us the boot.
Next day, we clomped around the Animal kingdom for about 8 hours and had an equally good time. I must let you know, though, that the term "we clomped" does not mean "I clomped". The previous day, I walked so far that my left calf locked up tighter than a drum , feeling like a permanent charlie horse deep inside. Amy worked on it that night, but the next day, I couldn't walk without distress. I was convinced by my family that I would never get around the Animal Kingdom on foot. So, we had to stop at the ECV center (Electric Convenience Vehicle Center) and find me a ride. It must be known that, for me, this was both humiliating and depressing. Turning this corner marked a new low on my scale of ALS lows. I hated even the thought of sitting my ass down on one of those things. Next I'll be doing my grocery shopping in one! Talk about bottoming out.............. Well, I had to do it, so I limped over to the scooter, took instructions from a cute 16 year old who spoke loudly, slowly and clearly, I assume because somewhere in her upbringing, all older, disabled people are either deaf or dumb or both. I don't blame her, I blame society for stereotyping my kind. Truth is, I heard her loud and clear, I understood every word she said and I smiled to make her aware of such. She smiled back and her job was done.
Now is the time to tell you: After I got past the embarrassment, the self pity and the sadness, I fired up that little guy and had it's operation conquered in about 10 seconds! I pegged it, nearly ran Nick down and narrowly avoided running over a walking dude old enough to be my dad. The true reason I overcame my loathing of a motorized Hoveround device is because, a) it was a rental, b) it was kinda fun, and c) I knew I had overdone it the day before; had I not, I could have walked the park, so I collected a little entitlement and saved everybody from worrying about me.
All in all, it was a great trip, and for that I thank Sarah- she put it together and made it work. It was a once in a lifetime visit that included my kids, (Tim too) and the two coolest grandsons alive. It's really great to post such a positive entry within a potentially devastating ALS blog. It shows me there is a positive in every negative scenario and I just experienced a huge one last weekend.

Back from the World of Disney

I confirmed what I've known forever, which is that I have the best family in the world, and that they still like me. I think Sarah has successfully brain washed her kids to get on the bandwagon of my coolness, even though I've never really been that cool. I know 1000 words cannot grasp the depth of a single picture, so I will post here some pics that will lessen my burden of print. Don't worry, much about our trip falls between the reality of image and the reality of emotion and decision, leaving me with much to express by way of word. I shall not let photographic imagery overtake the power of my written expression. Enjoy: