Swimming Pool Follies

The picture of me relaxing in my new chair, donning Oakleys, sporting Irish swimwear and generally enjoying life served as a diversionary prologue to a comically terrifying afternoon involving a pool, a ski jacket, 3 women and a wheelchair. I wish life really was a cabaret. In truth it is probably closer to the Keystone Cops when two daughters and a wife install a flailing pilot whale- me- into an in ground swimming pool, accelerating to Three Stooges status when it comes to getting me out. Two attempts a day is my limit, for certain.

Since we have yet to install a handrail designed to bisect the steps into the pool and offer me- questionable- assistance, everyone thought I could descend with help from both sides. Problem is, I  move, assisted, on flat ground, at glacier speed. Imagine how fast a glacier moves down steps. Add to this scenario the fact that the air temperature is a sunny 90 degrees and the water is a garden hose temp of about 60 degrees and you can imagine my reaction when lowering myself a half inch at a time then an assisted step at a time into the drink. By far the worst of the descent occurred between thigh and waist depth. By far. By. Far. I should have mentioned that I was sporting a new ski vest- Class III- to keep me afloat as it seemed and was confirmed that my swimming days are long gone. I found I could float on my back when assisted but when left alone I lacked enough arm stabilization to prevent me from rolling like a log. I could stand, but any movement caused me to sway and list without the ability to move my feet in order to remain upright. In some obtuse way, I am living proof of the existence of the second law of thermodynamics.

Getting out is the real comedy.

Having had my fill of bobbing and weaving, it was time to exit the pool. Since I couldn't, even under water, lift my foot the height of a step, it seemed better for me to sit on a step, back to the edge, while Rachel and Amy hoisted me up to the next. This system worked until the full weight of my largeness cleared the water. Only the mighty Rachel saved us all from disaster as she suplexed me out of the pool. I was then hoisted into my Jazzy so I could roll for the hills. 

Round two, a couple hours later, proved as harrowing as the first, more terrifying. Amy thought that the best way to enter and exit the pool would be in a wheel chair- not the Jazzy! She rolled out my hand push Roscoe, plopped me in and tried to secure the seat belt, conjuring visions of me kissing the pool bottom, trying to unbuckle with less than one operable hand. No seat belt. In order to lower me into the pool, Rachel had to wheelie the front end, carting me down each step, torturing my body as I lowered into the cold, all the while blind to the method as I peered skyward. Once submerged, I discovered that my water skills had failed to improve since my last aquatic adventure two hours prior.

Again, getting out.........................................

The theory was simple: Lower me in and raise me out. Ha. The bottom step was easy. After that, each step out of the water increased the dead weight- mine and the chair this time. I was a little disappointed that Rachel couldn't hoist the assembly pool side. Anyway, with Rachel tugging and Amy   turning one wheel as Sarah turned the other, I eventually found the high ground. I'm ordering a catapult and a winch.

How do I look?

My new chair, my new trunks, my Oakleys and my old t-shirt.

Different priorities

Little by little over the course of the last year I have been robbed of my abilities. Early  on, my imagination occasionally overtook my disbelief and ran my mind away with all the dread possibilities of my future. I was sure that at some time I would devolve into the equivalent of a brain in a jar- with eyes to see and maybe a nose to smell, surely tortured by the aromas of food I could only eat, pureed, through a port to my stomach. I imagined a hose attached to a hole in my throat, supplied with enough air pressure to help my weakened diaphragm work my lungs. A catheter, a bed pan. An itchy nose and no voice to complain.

How's that for a wake-me-up?

Maybe ALS moves in gradually so as to allow the sufferer to incrementally adjust to its  horrors. To me, the insidiousness of the disease lies in the fact that, while it takes you apart piece by piece, diminishing your abilities one by one, all the calamity aside, I feel healthy. When I'm sitting- as I am now- I feel as if I can get right up and stroll across the room. My legs feel normal, yet they don't work. Also consider that ALS- for  me- is leaving nothing to chance. I am saturated.

Aside from the ALS, maybe, surely because of it, I see things in a purer sense. For a while, the world dimmed, rendering a grayness encompassing everything real and existential. Now I see the blue, the green, I embrace the breeze. Strange as it seems to me, I am compelled to take it all in, head back, face skyward.

I will never be totally disabled. I can't say how far this disease will take me and I don't entertain the thoughts of my future any more often than they invade my head. Today, the world is bright and clear, some months ago it was dull. That's an improvement, isn't it? 

OK, I guess real and existential are the same thing. Or not. Isn't reality much more than mere existence?

Surprise!!!

Surprise!!!

It's Amy- NOT Tracy.

As usual I read Tracy's post after most of you had already responded.  You have probably noticed that like most of you I read his blog religiously but comment rarely.  This is due in part because half the time for some reason known only to the cyber gods my comments are sent off to oblivion instead of his comment section and sometimes I just have no words as I sit in awe of my magnificent maniac man.


Up until now Tracy has had free reign to write what he wishes as the words flow from his noodle on to this world wide billboard.  That is not to say I haven't given him what for on more than a few occasions for what I would consider an over share.  I have also cringed at his vivid and sometimes grizzly detailed accounting of this adventure of ALS with warnings of scaring his readership away.


The moment I read that he was considering closing his blog due to some minor little detail like his hands won't work or that he couldn't respond to comments in a timely fashion I instantly (in my very laid back way) told him that was absolutely ridiculous and what he does is too important to too many people (including us) to let it go by the way side.


I enthusiastically offered (to his dismay) to be his fingers and type for him.

Now, this seems a simple solution at first glance....but the reality of this partnership will be a challenge for both of us I am sure.


First- Tracy has a rather...unique way of doing EVERYTHING.   That would of course include writing.
You see, it comes from his head to his hands to your heads.  There isn't this whole planning or practicing or testing or editing thing most writers do.  (Those of you who have seen Tracy compete in TKD tournaments will attest to the fact that most times he'd never even tried the breaks he won with until that day.  Does anyone smell fire???)


Second-Tracy is concerned that if he has to dictate to me it will interrupt "the flow".


Third-Then there is the whole- me gasping, then thwacking him then threatening him that will most assuredly go on since I will now know what he is writing before he hits that precious POST button.

Fourth-The fact that I can't spell even with spell check is of great concern to him as well.

Then the REAL thing-, one of the main reasons for Tracy starting this post was so that he could have time alone to ponder, express, vent, request, grieve, learn, laugh, share....
Yet another adjustment that will have to be made because of ALS.
But I always tell him - we are ONE.  He may feel alone at times but he is never truly alone, 
SO....




I post at this time on Tracy's blog as a disclaimer....

Should I become Ghost Fingers for ALS-What I can tell you- I, Mrs. Tracy Boettcher, will promise to do my best to allow Tracy the freedom to express himself freely- even if my tongue is bleeding from biting it.  All spelling mistakes are mine mine mine.   

Just say something-repost

I'm reposting this request in the hope that friends and family may have overlooked my request- my plea- for communication. To the many who have responded, I thank you. To those who don't check their e-mail every day, I apologize for my impatience. Don't worry about commenting on my blog, just drop me an e-mail. tracyboettcher@gmail.com








I probably get too wordy for most readers tuning in to read all or even most of my posts. Expect my writings to lean toward brevity not because I have less to say so much as because it is getting more and more difficult to pluck a keyboard. Unless the path of ALS is diverted or blocked it is a matter of a couple of months when I may need to put an end to this blog in its present form. I cannot use Dragon effectively with  my  garbled speech patterns. I will continue for as long as I can.


I know I have a lot of readers- family, friends, others- but only a handful respond        to me through e-mail, facebook or by other means. It could be because I'm lousy at follow up but I suspect it is more likely that many   simply don't  know what to say. I implore readers to set aside their apprehensions and drop me a communication, even if brief. To help the fearful, I will form your composition. Just type: HANG IN THERE, BUCKAROO! I'll take  it as caring advice.  To those who don't know, my e-mail address is tracyboettcher@gmail.com       thanks

A call to arms, hands

If I were simply a paraplegic I could propel and manipulate a manual wheelchair, but as it is my left hand, attached to my left arm, attached to my left shoulder is relatively useless, like an appendix, though an appendage, mostly in my way, precludes me from turning my left wheel. My right hand, attached to my right arm, attached to my right shoulder is currently halfway down a path to join my left. When they meet, the pair will join together in uselessness in my lap. Don't be discouraged, my lap functions perfectly in all manners. I am currently adjusting to and learning of the advantages of being fed at all meals. Fortunately, I can still hold a hot dog long enough to shove it in my mouth. 


I'm sure that for some this is hard to read. Keep in mind and rest assured that every day my life improves as I get to know my grandsons, my kids as adults, look forward to swimming pool life, ride the parks alongside Amy as she learns how to manage her new one speed, always enjoying every day I've been allotted.

How things feel

ALS is peculiar. To be sure, pain and constriction, spasms and fasciculations, sluggishness, depression, fear, heightened emotions, fatigue and a diverse host of other symptoms invade, but none of them accurately describe more than a single piece of the puzzle that is Gehrig. Let me try to explain.


Standing, walking:


I feel no pain when standing, though most of the time I need a hand up. Nearly every time I stand, my body- head to toe- locks up for a number of seconds. This action occurs often at night but rarely during the daytime. Once standing, I cannot take a single step without the security of something- or someone- to hold onto. I have very little personal balance. Each step is 6 inches or less and the effort to will myself forward is monumental. I am not too weak- my knees do not buckle- but every step is a master chore. It takes me 5 seconds or more to move each foot. The best way to describe the delay would be to say that I must convince each leg to respond. The only walking that remains practical is transferring from bed to chair. I feel lucky that I can walk at all considering the prognosis offered by the neurologist in Chicago a year ago this week that I wouldn't be walking by Christmas 2011.

I am still here

I try to post often enough to keep readers interested, coughing up sarcastic witticisms or clever diatribes, no doubt to keep a particular audience, while delving into my childhood in order to satiate the balance. I continuously search for a writing element appropriate for an audience category yet to be determined. On any given day I'm likely to loose a few to boredom as I re-gnash conversation and dialog to tell the same story- with attachments. In the end, clever is too weak to carry the day. I write from my head rather than from my heart. I'm working on that.


While I'm somewhat prolific while writing this blog, I fall far short in individual communication. My personal analysis is simple: When I post, my message is directed toward nobody in particular. If I email someone, I have the responsibility to direct myself toward meaningful, personal conversation. I'd much rather imagine than experience. My brainthink is comfortable in one-way narrative while my heartthink remains infantile and fearful of personal contact. Telephone contact is even more complicated by my deteriorating speech patterns. If I get emotional, my articulation takes a dive. I am aware of those who worry about me, I am equally aware that I fail to communicate with too many. This does not mean I fail to acknowledge them all- you all. I certainly miss my old world. My new one is just developing and looks to be bright. ALS does not cause amnesia. I remember everything, everybody. And I long.


I write as if I were addressing a large crowd. I take in everyone without focusing on anyone. I need to be more intimate. I need to focus. I need to listen to my heart and trust what it says. Like I said- I'm working on that.

Back to today

Our adjustment to  life in Dallas is proceeding better and more swiftly than I had thought possible. Other than a tornado or two, the weather has been great. We have essentially, except or some trim, finished our bathroom remodel. It turned out better than anyone expected. I will soon send some before and after pictures. I'm terrible when it comes to pics. Please bear with me.

We live in the White Rock area of Dallas, where all the artists live and all of eclecticdom exists. Amy is in heaven.

The pool will be resurfaced and ready for me and my water wings- three on each arm and four on each leg, a buoy cinched up around my belly- as I fly my Jazzy into a bolted down parking block and project into the deep end. 

As the summer rolls in, I will tan. Standing on my head shall become a requirement so as to properly tan my recently acquired underbelly. I plan to spend the majority of my time in the water so as not to be mistaken for a beached baleen possessing mammal.

Despite all difficulties, life is good.

California, horse bones and girlfriends

Sometime back I left off after describing my summer with a stopwatch, learning that summer how to walk on my hands, culminating in a 50 yard triumph. I failed, however, to detail a few important happenings that just might give you a better understanding of the roots of my independence. By and large, I spent my youth, most of it, unsupervised, and while I did play youth football, (Pop Warner, JFL), most of my experiences were unstructured as well. I will now recap the untold adventures of the summer of the handstand. I say recap because I might have already detailed a few and I'm just too lazy to look back to earlier posts.


Fireworks:
Beginning on the fourth of July and running to the first day of school, Disneyland, very close to us, in Anaheim, set off fireworks around 9:45pm. Don't ask me how I remember the exact time- I just do. Anyway, me and some neighborhood kids- not Rodney; he lived outside the neighborhood and couldn't be cavorting so late- found a way to climb up on the roof of a 2 story apartment, offering us a bird's eye view every night. If you're wondering how we could be out so late, you'll have to talk to my mom or continue to wonder because I haven't a clue. Remember, though, it didn't get dark until way past 9pm. 


Learning to swim, guerrilla style:
Common amongst the neighborhood kids was to climb a fence or otherwise gain access to the swimming pool areas found in some of the nicer apartment complexes. I followed along a few times that summer, learning that early in the day was better than later, when a passel of  tenants would run us right back out. Most times we never got to water. An important factoid here: I could not swim. A detail I should have shared with my buddies. I would not be here today if not for my catlike- drowned cat, almost- reflexes. The story goes: Early one weekday (I'm sure) morning we climbed a fence and found ourselves, 3 of us, inside the gates of a very nice apartment complex, alone except for an unattended swimming pool. We jumped in- me, of course, in the shallow end- the other guys cannonballing off the diving board, climbing out and repeating,  all of us knowing our fun had a very short lifespan. I got out, rounding to the deep end to show my support only to have one of my friends walk casually behind me and shove me in. Nine ft. That's what I saw as I hit the water, flailing. I didn't inhale until I went under. My flailing increased. I surfaced and choked out the water I'd sucked in, sputtered for oxygen and, just before I re-submerged I was sure I saw the guy who pushed me in- laughing. Meanwhile, my arms and legs flipped and kicked, I came up and gulped air and somehow I made it to the side where I scooted, hand over hand, until my feet felt the bottom. About this time management was on the scene and we were kicked out.I think I threw up soon thereafter.


Oranges, weeds and Apple Beer:
We raided and explored an orange grove located behind a little grocery store  down the block, climbing trees, picking oranges, stealing and trespassing. Turned out, the oranges were juicers, thin peels, ok taste but full of seeds. We did discover a profusion of these plants, topped with tiny yellow flowers. The stems, we found out, were juicy and sour. We ate a million of them. No doubt they had resisted the pesticides, possibly they were the product of DDT. Could it have been the root cause of my ALS? Maybe. We washed it all down with cans of Apple Beer, a soda product that we thought was both cool and decadent.


Roller skates and carports:
This girl, whose name I may never have known, let me try her roller skates, the kind that clipped onto your shoes, the kind with a key- like in the Melanie song- the kind with metal wheels, the kind that threatened to pop off at every seam in the sidewalk. I flopped a few times before I got the hang of it, soon finding out that downhill is much preferable to uphill, not long after finding a parking garage under construction, on a slope no less, fresh concrete and swoops downward connecting each stall, nearly seam free. Near the end I found a diagonal brace with my forehead. After pinwheeling off my feet, smacking my back and cracking my skull, I recovered with a new understanding of construction sites.


A bike and a parked car:
As briefly as possible I can tell you that being a boy and hitting the back of a parked car while riding your bike is uncomfortable bordering on agony. I can claim such experience on that same eventful summer.


I know I titled this post including something about horse bones and girlfriends. You'll have to wait on that.

Coming to PEORIA

When I said we would be returning to Peoria often, I meant it. We will be in the River City from Tuesday, May 22 until we head home Sunday, May 27. Our trip north is partially planned because Rachel needs to complete a photo shoot. We also plan to attend a gig in Bloomington, at a place called Six Strings, where Nick and Paige will be playing as the Paige Dechausse Band Friday night. On Saturday, Nick and Paige will be performing a duo at the Rhythm Kitchen beginning at 8pm. All ages, great food. We will be staying at the Par-A-Dice Hotel for the duration. More details to come.

An addendum to a trunkated post

My last post was cut short for some reason. I concluded it by saying I would feel better with those who knew me walkin' n' talkin', soon to culminate late May when we visit Peoria. Details to come.

Clamoring for escapism

I find myself writing in memory, reliving and sharing, having discovered a method effective in focusing myself on anything other than my condition. I'd label it escapism except that there is no escaping reality as my symptoms continue to manifest themselves. I need to be careful when making travel plans, mindful of the increasing difficulties ahead. As an example, sleeping conditions may pose a problem. I now sleep in a hospital bed replete with elevation controls and tubular side rails. Contorting the mattress properly helps combat my self labeled "mobility terror", (a term my physical therapist found amusing) while the side rails provide security and leverage when attempting to roll onto my side. Currently, my favorite sleeping position is on my right, one arm wrapped around the tubing, the other against my pillow, fingers forced straight by the weight of my head. My face presses against the rail, not unlike a prisoner peering from his jail cell, though unlike him, I feel security within my confines. After a while, my shoulder and hip wake me, forcing a rotation to my back, a couple full body convulsions where I find myself measuring the severity, trying to control the tension enough to prevent blowing out a calf, hamstring or thigh. Finally I contort myself back into my comfort zone and fall asleep for another spell. Wash, rinse, repeat. All night long. If you're wondering where Amy is, she sleeps on a cot with an inflatable mattress next to me. She sleeps with me but not with me. The only spooning I get is when she feeds me yogurt in bed.

When I wake up in the morning, my left hand has slipped from under my head and is clawed shut, my arm bent and pressing on my chest. My right has begun a similar process. If I open my right hand and use it to force open my left, hen my fingers are straightened, a semblance of relief comes over me. I can't explain it, but my occupational therapist was familiar with the reaction and suggested a splint to keep my fingers straight. I will be wearing one soon.

None of this nonsense is overly painful for me physically but the emotional toll is exhausting. Losing the ability to walk is bad enough, all this other shit makes my condition nearly intolerable. I used to fear seeing someone I knew as my disabilities became more obvious. I thought I'd feel less embarrassed around strangers. I was wrong.

The saga that is Amy

I left off exhilarated at the news that Amy loved me. She really, really loved me. From that day on our relationship developed at a frenetic pace. When I made proclamations I shot from the hip, while she shot from the heart. At first it was difficult for me to believe anyone would give themselves wholly to me- I once tested her resolve, resulting in the realization that I was a fool to question her- with no reservations.

I am certain that we set a new standard of commitment to each other based upon our relationship today. We set the bar high and have clung to it ever since.

We often discussed what our kids would look like. We agreed they would have big legs since we both were so endowed. We determined, based on my gap and her overlap that our kids would have good tooth alignment. We considered names. Not the things most teenagers spend time discussing.

We bought a car together. A 1959 pink Rambler Convertible with no brake lines. For 55 dollars. I'll tell you about that later....................................

Fast and furious

Fast in that the disease is determined to progress at a pace all too visible. I am the soil nurturing bamboo while I'd rather be poisoned water in a hydroponics pond killing off the greenery. I need quinine to settle my nerves (true) and strychnine to settle the ALS. I'm still working on the concoction. Furious is my state of mind and my pace. I battle each day between closing my world down to a level of security and convenience commensurate to my current level of function and pushing my limitations beyond my comfort zone, risking a fall, an embarrassment, maybe more. No pain, no gain they say- an extremely over used statement; stab me so I can walk better? What kind of bull shit is that?- now replaced with "It is what it is"- as astounding and intelligent as Yogi Berra's statement "Wherever you go, there you are". OK, that last sentence went exactly nowhere, the same final resting place as this post. I'm not in the least sorry that I gotta ramble. I gotta incite controversy. Here I go:

I read the first two installments of The Hunger Games and am crawling through the third. I saw the movie. My take on the writing is confusing to me. I mean, I'm confused. Kids killing kids within a totalitarian society, apparently post cataclysmic. Great concept. Poor writing. A 'tween style perfectly designed to draw in young readers. This is certainly no Lord of the Flies. A great, complex story weighted down to the lower book shelves to be read by 14 year old kids through simplistic structure. Maybe I'm too old and cynical. Maybe our youth has matured to the point where they can deal better with butchery and war. But maybe, just maybe, parents should read these books first and then decide if their kids can handle them. My suggestion would be to introduce them to the history books- plenty of killing there. Our youth are already exposed to enough mayhem. Make the movies as harsh as the realities in the books and give them an R rating. If parents take their 12 year old to the films, then they are just plain idiots. 

Does anybody remember Ayn Rand? She wrote "Atlas Shrugged", a socio philosophical fiction about a bunch of brainiacs sequestering themselves from society in order to prove their worth, watching the world delve headlong into massive dysfunction. Something like that. Previously, she wrote Fountainhead.

Why do I bring her up? I just watched an interview with her conducted by Mike Wallace in 1959. In the interview she said she was the most creative thinker in the world. Ha. Russian born, long time American. Bitchy, self important, self loathing, a philosopher in the sense that she could incite controversy by saying controversial shit. In my opinion, an expert at being an expert, nothing else. Any success she had was through fiction. As was her  life. Do you get the impression I don't like her? Why, I like everybody. Often it's what spews from their mouths that irks me.

Another new one

I can't put a hat on my head. Good thing I don't wear one!

In passing.......................

I fell in love with Amy the day I met her. After we started "dating" I determined that a license had been issued to give me right and privilege to lay eyes upon her every single day for the rest of our lives. A lesser woman would have succumbed to the notion that I was overwhelming, cloying, even suffocating, but she was more than the typical 16 year old girl. She was, and certainly is, even today, especially today, more tolerant, more patient, more caring than anyone I have ever known. I must have had an inkling in 1974 based on the fact she didn't run for the hills screaming "Leave me alone!" Later on in life I learned that she had a rather large bubble, or comfort zone, one that I obliterated before school started our Junior year.

Late in summer, I found myself, Amy, maybe Mary, certainly others- a car load at least- gathered at Gene's Dairy Dream, unfortunately gone from this earth these days, a hang out and former workplace for me- then 14 and happy for a buck an hour-, when my girlfriend previous, Cindy, unaware of my neglectful indiscretion and new squeeze, pulled up on her bike. I immediately did the right thing and swallowed  my tongue so as not to be able to talk to her, learning though, that I'd simply choked on a milkshake, my tongue remaining functional. I did the next best thing and went to her to explain to her why I was a dick. She actually laughed, which confused me more than anything, told me it was cool- now my relief is laced with grief at the thought that I was so inconsequential- and said hi to Amy as if they were long friends. Outwardly, I took it in stride but inside I tripped and fell on my face. An altogether awkward afternoon.

So, free of all encumbrances, I pursued Amy with my very best stalking techniques and she parried my assault just enough to continue to like me.

By our third or fourth date I blurted out those three words- you know- and eared up for her response.................. Day after day I went after it- wash, rinse and repeat. Day after day after day I blurted, I whispered, I shouted, I pleaded my delivery, longing for verification. I must have heard "that's nice" a hundred times, "you're so sweet" a thousand and suffered her smile a million. Six months later, in the parking lot of Pizza Inn, I lost it. I NEEDED TO HEAR IT! She warned me.... something about no turning back, about forever, about how I would be stuck with her........... Kid me! I had been the agent of forever. I had stalked relentlessly. I had always wanted what I knew I wanted. GIVE IT TO ME! She did. She said it. She meant it. I'm telling you, that first six months was an eternity. Since then? A blink of an eye.

First, my condition...........

I am alive, our house remains unscathed and the hail spared our cars. Leave it to me to bring Midwest tornadoes to Texas, where the nature of the state made them bigger. I've heard no death toll, I hope it's zero.

Since I have now been in Texas over a month I feel it only fair that I update my conditions and my condition.

I recently visited my new primary doctor and took a blood test to determine long range averages involving my borderline diabetes, resulting in less required medication. My blood thinner medication is right on track. I really like my new regular doctor. More recently- on tornado day- I met my new neurologist. Suffice it to say that all ALS specialists share a common bond of ignorance. While this sounds negative- and for me, it is- their answers to my questions are the same as the answers given to patients 40 years ago. Unfortunately for them and us, they are simply managers of disease. When I asked this doctor what was his most difficult task when dealing with ALS sufferers- 300 patients currently reside in his herd- he had no answer. He seemed surprised at the question. I would have thought his most daunting task was to admit he was powerless to direct any real improvement- in his case, for 20 years, confirmed by his statement that while there were cases of remission, he had never had such- in an ALS patient, telling me all his herd had either died or was now dying. Any ALS specialist, all ALS specialists are batting zero, merely tenders of the dying. I use the term "herd" because I feel I have joined one. 300 bovines with mad cow. We are tended by a herd master who will offer to keep us from the barbed wire and other discomforts, powerless to keep us from the real danger, the real monster in the room, ALS. Mad Cow. Whatever.

Doctors are very helpful when it comes to a lift chair (one on the way), a hospital bed (got one), drugs for crying (yet to use, given my track record with such) muscle relaxers (tried, turned into a wet  french fry) and a plethora of other drug options I hope never to need.

We are a week or so from completing our new bathroom. Can't wait. I just opened a package containing a transfer disk, much like a Sit n Spin, designed to  help me pivot and turn, help most welcome.

I can no longer walk unassisted. Transfer is very difficult. My remaining good hand and arm are no longer good. Imagine any activity requiring use of arms or legs and consider my dilemma. While generally I am in no pain, occasional full body muscle spasms  rack me- maybe a half dozen each day- threaten to lock major muscles, painful as hell. My track record with drugs dictates that I must manage these attacks on my own. So far, I can.

Above all and more important than my problems, borne out of the fact that I can deal with this disease as well as I do, is the minute by minute support of my family, Amy. Without them, her, I would be lost. I just hope she continues to carry my sorry ass after I post the continuation of our budding love affair.

This could be brief- tornado in Dallas

Before you panic at the thought that yours truly would or has succumbed to the thunderbolt ALS solution I've written of in previous posts, consider these facts: I live northeast of Dallas, I just returned from my  neurologist and I am posting this very minute. This is not to say the tornado doesn't segue here to fulfill my termination fantasy. In truth, had I planned my personal cataclysm for today, I wouldn't have wasted time with doc. 


Neurologist report: Smart guy, smart enough to confirm what the world already knows- not much. In all, the only difference between this visit and my first visit a year ago is that I now possess ALS history. More to talk about. Now I have to take a shovel and dig a basement.

Time for more something or other

Quickies of updates, fleshed out later.

My new hospital bed just got setup- can't try it out until tile guys, working in the bathroom, go home for the day.

I've slept on Amy's hypno recliner the last couple weeks to avoid mobility terror.

Can't wait for our bathroom to be completed so I can shower without fear of crashing.

I ordered a bidet type toilet seat designed to save toilet paper. They say.

Grab bars shall be everywhere.

Neighborhood here is artsy and eclectic, a paradise for Amy.

I visit the neurologist tomorrow for the first time.

A dead squirrel passed me as I transferred from my Jazzy to the van, three feet away- granted there was a stiff breeze to help the stiff rodent.

My ipad, with its case, is too heavy to lift with either hand.

I speak more like Elmer Fudd the days.

Swallowing fluid is anything but.

My grandsons are awesome, as are Tim, Sarah, Rachel and Amy.

I miss everyone in Peoria.

I will be visiting late in May.

I wish I could do yard work.

Everyone else wishes the same.

My shower fixtures just showed up, thanks, Mike.

I will soon have a recliner that lifts me out my seat to a standing position.

I visited my GP last week and found I have finally LOST weight! 8lbs. Note: I'm still fat.

My right leg won't listen to me. My left leg can't listen to me.

I need to write more.