Tuesday, 31 March 2015

Putting On Shoes

It always happens. I had a terrific day yesterday, exhausting and long, but exciting and filled with adventure. Now, today, I am having the downside bounce, struggling with clothing, intimate bodily functions failing me at critical moments, pain in my arms and hands. It's all of a piece, this process, where one day up leads to another day down. It always happens.

This morning I was watching Katherine put on her sandals. She's purchased this cute little pair of woven slip-ons, multi-coloured with a soft rubber sole. They are tiny, as is she, barely large enough for half of one of my foot, thin slippers into which not even my toes would go. They fit her perfectly.

As I was wondering at her, seeing her standing up as she slipped them on, I watched her wiggle her toes into the fore part then scrunch her toes to pull the soles backwards towards her heel. With a delicate balance and grace, she lightly bent down to pull the fabric over her heel, then stood up again to admire the result. She did the same, with the same process, for her other foot, lifting her heel and turning her foot to confirm both fit and form. She approved, moving on to her next task.

I followed this process intently, realizing how little I could do of this. I can no longer wiggle my toes into my shoes, nor wiggle them once in. If my toes go in folded, they stay folded for many hours until gravity and movement finally does its work. Some days I go for the whole of it with curled toes inside of unforgiving shoes. I can no longer scrunch up to adjust foot placement or adjustment. I have to do that from the outside, using my arms and hands to adjust the shoe around my foot instead. I can no longer slide my heel into the shoe; I must pull the shoe over my heel, folding the soft edges at the back of my shoes inwards in the process, a fold which has now become permanent in the one pair of running shoes I wear all the time.

As she moved onto her other tasks, naturally accepting that her body would do the things needed, I sat in my wheelchair, shoeless, wondering, I will have to put on shoes. It will be an ugly process, with much demanded of my arms to compensate for my useless feet. I watched her pick up, pack, get ready, load the luggage trolley, all those things where my help is pointless and small, where my body is no longer able.

I get really tired of this nonsense. It's sad and depressing, even here in South Florida. I may leave, but ALS never leaves me. I just wish I could put on shoes like a normal person.

Monday, 30 March 2015

I'm Excited

I'm excited, about to do something I have always wanted to do; I'm going on an airboat ride in the Everglades. I've always been interested in the Everglades. Yesterday's drive across this vast habitat of water and bunch grass peaked that interest even more. The Everglades are unique, a one-of-a-kind ecosystem, not easily repeated and not found elsewhere.

The Everglades actually begin up near Disneyworld, in Orlando, Florida, with the Kissimmee River flowing into Lake Okechobee. This massive resevoir of water begins a slow moving journey to the sea, forming a river some 60 miles wide and 100 miles long as it moves through a shallow, grassy region of South Florida. The Everglades themselves were once described as a river of grass, interlaced with a million small ponds, canals and backwaters.

The land is deceiving as you drive across it. Vast fields look solid, ready for cattle, yet one step onto that grass sinks you into water anywhere from a few inches to several feet deep. It's the perfect home for creatures like snakes, bugs, birds, and of course, alligators. It's not all water; there are dry spots, places where the land is firm. Even these spots look deceiving; if you look at the trees they land appears to rise up in hillocks. In fact the trees get higher as they get more centered on the high patch. The trees closer to the edge are lower. This makes any dry patch appear as a lump or hump, when it fact its only that the trees near the middle are taller than those exposed to the water's edge.

The whole of South Florida is wet, even in the dry season. While there may be a drought, the underlying aquifer exchanges vast amounts of water from ocean to land, bubbling up as springs and swamps, only to drift lazily back to sea again in a thousand rivers and streams. There is so much water here that only the edges of this part of the state, the sandy land hear the beaches, present good building spots. The middle of South Florida is mostly empty, like a badly formed doughnut, except that the southwest part has no civilization at all; it's one giant river mouth.

Today I get to explore some of that doughnut hole, that middle part where water is the dominion of creatures which are foreign to me. I get to learn something new. I'm excited.

Sunday, 29 March 2015

21 Days

Halfway. It's been 21 days since I left my cozy little apartment in the chill of a Calgary winter, 21 days since I have slept in my own bed, cooked in my own kitchen, watched my own TV, showered in my own bathroom. It's been 21 days since I've seen my Calgary friends, the family that has surrounded me for the last couple of years, the people who are such an important part of my daily life at home.

In those 21 days, we have swept down the Great Plains of North America, skirting the eastern edge of the great cordillera, that massive, scoliotic spine which runs the length of these two great continents and the isthmus connecting them. We've dipped in and out of the edges, made our way to the midst of the wide, open prairie, wormed out way south all the way to the Gulf of Mexico. We've made the turn east, skirting the edge of the ocean, winding through the swamps and bayous of the Gulf States, visiting the great American cities along the way. We've seen family, old friends, new places along the way; made memories, collected souvenirs, taken photographs.

We are a short distance from Key West; by the end of the day it will only be a few hours off. Our voyage today will take us further down the west coast of Florida and into the Everglades, that sweeping swampland bordering the Gulf of Mexico, creating a unique and unusual habitat primarily populated by fish, reptiles, birds and aquatic mammals. It's no place for us. Another day or so and we will have gone as far south as possible; we'll turn about, heading north, making another wandering pathway to home.

Florida is a busy place; there is no sign of a recession or economic difficulty here. Lower gas prices have re-awakened the American love of a road trip. This is vacation land; every hotel is full, every restaurant has a line up, traffic fills every highway. There are no budget hotels; even the cheapest runs in the $100 US range. Last night our Super 8 was $120, and we got the last room in the place!

Today we will head down further into this madness, loving every minute of it. Budget be damned; we are near the turning point. There will be other days, other chances to get a cheap motel, eat a cheap meal. For today, I plan on living, enjoying what I have and where I am, doing what I can... for another 21 days.

Saturday, 28 March 2015

Old Friends, Good Scotch

We arrived in Tallahassee, Florida last night to the invitation for dinner and a place to stay with an old friend of mine. I use the word "old" in both its senses; we haven't seen each other in 15 or more years, yet before the first hello was finished, he and his wife Bonnie had invited is to share their home with them, share a meal with them. Their sons came to visit, we spent the evening reliving old stories, making up new ones, sharing dinner, taking a post-prandial scotch on the sun porch.

When you are young, you don't realize that the years don't appear suddenly, that growing older isn't something which happens one day in the future. It is a process, a slow slide over the years, a pathway we all walk down. You wake up one day and realize that you have arrived well past middle age, at least you do if all goes well in your life.

Illness is a part of this process. Tom is fighting a long term battle with prostate cancer. He was first diagnosed five years ago, treated then with continuing treatment along the way. The cancer has spread into his lymph nodes. Fortunately it is a very slow moving cancer; radiation therapy seems to work well for him, killing off the cancerous lumps as they appear within his body. Yet even with this, his life has been impacted.

As a young man, I thought I would be strong forever. The time I took to enjoy my life wasn't out of any sense of failing capacity. For some reason it has always made sense to me to enjoy the ride as much as possible, rather than waiting for the end of the ride to find enjoyment, rather like this road trip. Each stop, each sight, each happenstance is something in which to find pleasure, a way to fulfill my life. I've always done this, sough that fulfillment in every day.

As an older man, failing in health, I know I am no longer strong. ALS has done this to me, yet in a few years growing older would do it just as effectively. It's all the more important for me to find the joy of the moment, to share laughter, to eat well, to have a nice glass of scotch. Each time may be the last time; I just didn't think it all that real in the past. Now I know for sure that this is true, that I should enjoy it while it lasts. Soon it will be gone.

Friday, 27 March 2015

Warm Breezes

Gulf Breeze is living up to its name this morning, with a strong wind from the north whipping up Pensacola Bay into whitecaps, pushing the boats about at the dock, rushing the waves onto the shore outside our motel. The palm trees are making the high pitched swish of music as the pulse of air moves through the fronds, a kind of swish cymbal percussion to accompany the screaming of happy children playing frisbee on the lawn near the shoreline.

Our first full day in Florida will be a cool one, with temperatures in the mid to high sixties; for the Celcius crowd, that's somewhere between 18 and 20, warm for northern climates but cool for the denizens of the deep south. It is the ocean effect, the constant movement of air, stealing cool from the sea and transferring it over to the land. The ocean and the sun make the wind; those of us who sail know what this means.

I plan on exploring the coastline for a while this morning. Then, after a couple of hours and a good solid parked-in-the-truck nap, we will likely head inland. Our goal is Tallahassee, Florida, to visit and old friend of mine. This trip seems to contain a lot of this; visiting old friends, seeing favourite places. Each visit, each stop, each moment seems to have the sad feel of the last time. I wonder if I will ever pass this way again.

Of course, I have to be careful here. I started wondering about "last times" a couple of years ago, when my legs were failing fast and it looked like my time was truly short. The reality is that none of us, and especially not me, knows the day of our passing. I am not immune to the "normal" causes of death; I just have a more certain one at a relatively near endpoint. It's the whole "relatively near" thing that causes some distress. I don't know when that will be, but I know it is coming.

On the other hand, I am in Florida, about to drive along the Gulf Coast. Later today I will dine with wonderful friends, relax my tired body in the safety of a kind home, sleep in the warmth of a lovers arms. Life is good, as long as I look at living.

Thursday, 26 March 2015

It's Raining Today

It's a bleary kind of day today. The cold, grey skies have already delivered their promise of rain, the streets glistening, reflecting the headlights from cars going to and fro. The clouds are leaden, still, motionless in the cool air, threatening still more rain. The sun and warmth of yesterday is gone. Today will be a good day to be in the truck, driving through Mississippi and Alabama, possibly right through to Florida. On the I-10, this will be all of a few hours drive and no more.

I'm feeling kind of bleary myself. For some reason, last night I spent much of the night in that vain throat clearing and coughing exercise that attacks so many PALS. There are so many things to which I could attribute this annoying irritation, so many causes and reasons on which I could pontificate, all of them merely suspects in the long dance of symptoms associated with ALS. The bottom line is that many PALS develop some sort of swallowing mis-coordination before they get Bublar ALS, and this is the most likely cause of the intermittent need to clear my throat.

Much of last night was spent in this effort, anything resembling sleep pushed aside as I cough and cleared my way through the night. When this happens, usually a glass or even a sip of water will ease the distraction enough for me to return to sleep; not last night. I awoke several times, many times, with the irritation in my throat just enough to push me from sleep. Eventually I resorted to a Cepacol cough lozenge, the WMD approach to numbing my throat into submission. Sleep once again was possible.

Yesterday was a good day, a day with a very late coffee and beignes at the world famous Cafe Du Monde, just off Jackson Square in the French Quarter of NOLA. This cafe of European flair serves only one thing; coffee and beignes. The waitress asks you what kind of coffee you want, and if you want one order or two. No description of any sort, just "one order or two". After what seems like an eternity of wait, cafe au lait or some other beverage, along with beignes with a snow storm of icing sugar dusted over them arrive at your table. You eat, you leave. There are always more customers.

We took a steamboat paddlewheeler tour of the Mississippi River near NOLA aboard the S.S Natchez, this sixth vessel on the Mississippi to bear this name. A classic old boat, or one built in 1975 to look like a classic old riverboat, Katherine and I took to the steeply up-swept foredeck to get a great view of the river and shoreline. It's a two hour ride, one hour downriver and one hour back. For much of the return run, a Jazz band plays in the main salon, a place of brass and polished oak, sufficiently inviting that I took some time there to enjoy the music and the setting. Katherine sat at the rail, entranced by the river itself, a position usually held my me.

We finished our day in the Louisiana sun by having dinner, once again in the French Quarter. In a budget clobbering exercise, we enjoyed salad with seafood, an appetizer of seafood, followed by seafood main course, all summed up by Pecan Pie. I don't feel too bad about going over budget on this; we've been doing very well with our spending over the last few days.

Wednesday, 25 March 2015


I'm sitting in my hotel room, looking down Common Street in NOLA, looking towards the Mississippi River, a view blocked at the end of the road by Harrah's Casino, various other tall buildings, and the levee on the river, the last bastion holding the river within its banks, protecting a city set lower than the river itself, making it prone to flooding. This is what happened in Hurricane Katrina a decade ago. The levee failed downriver from here, flooding much of the city in the process.

It's a lazy kind of morning, the pre-noon hours gone in an indolence of snoozing, sleeping, lazing about. You would wonder, in a city as beautiful and lively as New Orleans, why I would spend the morning in bed when I could be out exploring. I think most of us already know the reason for my resting; I need the rest.

Within this laggard state, I have time to enjoy the sun streaming in through the windows, all the while refreshing myself with the breathing cool of the air conditioner beside my bed. There are clouds in the sky, over the river, down at the end of the street, moving quickly past, off to the north. The noise of traffic is almost stilled now that the morning rush hour is over. It's quiet, a listless kind of near somnolence. I will get going soon; for now, it's time to behave as shiftlessly as I can.

Yesterday was an exploration, after a four hour drive from Lake Charles. We picked up "cracklin's" along the way, a Cajun treat available at almost every store and gas station along I-10 as is slides its way across the bayous and swamps of southern Louisiana. This is Acadiana; Cajun country, peopled largely by those Adacians expelled from the Maritimes of Canada during what the Europeans call the Seven Years War, and what the Americans call the French and Indian Wars. The British controlled Canada; those French speaking people who would not swear allegiance to the British crown were expelled, heading south to French controlled Louisiana.

It is another of the many quirks of this city, besides the quirkiness of the river, that this land has passed from the Native Americans to the Spanish to the French to the Americans. In fact most of the buildings in the French Quarter were built by the Spaniards. The streets all had Spanish names before the French took over. Then there is Canal Street, the main street in NOLA, which acted as a dividing line between the French and American populations once the USA completed the Louisiana Purchase in 1803, the streets on the French side having French names and the streets on the English side having English names.

There is a lot of history here. This afternoon we will explore some more of it, before having a Crawfish Dinner in the French Quarter. Then, tomorrow we are on the road again, to Alabama and Mississippi, with Florida to follow.

Tuesday, 24 March 2015

Driving Through The Bayou

We are headed for New Orleans, Louisiana today. Our drive will take us over the bayou country, along the highway with its edges verdant and swampy. I say "over" the highway as the stretch of I-10 we will cover is largely bridges over the swampy ground below, that ground being too wet and boggy to support any sort of highway or roadbed. And there are gators down there too. It's a nasty stretch, and must have been hell for those constructing this stretch of highway.

I've been to New Orleans in the past, and have had great fun there. Katherine has not been there before; I am looking forward to showing her some of the beautiful antebellum homes in the Garden Quarter, some of the above ground cemeteries, and, of course, the French Quarter. One of the great joys for me in this trip is that I get to show Katherine places where I have been in the past, places which bring back many fond and fun memories for me.

This whole trip has been a sharing experience, one where she gets to learn about me and I get to learn about her. It's a trip which combines both the old and new, the known and unknown. For me, much of this territory is old ground; I've traveled a lot in the States. While Katherine is well traveled internationally, most of her US experience has been limited to planned tours, those which would be considered safe and appropriate for a single woman. The trip is a bit more of an adventure, for both of us.

The drive itself will be part of that adventure today. It's hard to understand the size and shape of bayou country until you see if for your own eyes. I imagine, in my mind, the early Europeans first coming here with their horses and armour. I imagine the local natives in their pirogues and canoes, looking at these strange human creatures struggling through swamps where every branch and pond held creatures that would bite, kill, and eat them.

It's a lot easier for me to make this trip than it was for those early explorers and settlers. For them, this land would have been hell. For me, it's pleasing, pleasant, green, lush, and an easy drive.

Monday, 23 March 2015

It's Not Painless Today

I am in a ton of pain this morning, a mountain of hurt which has taken up residence in my upper arms, particularly in my deltoids, the muscles which wrap over the shoulder bones and attach to your upper arms.  My upper biceps are in pain as well. If I didn't know better, I would assume I had pulled these muscles lifting some heavy weight or chopping down trees with an axe. I can do neither of these things.

This kind of pain is not new to me; I've had it happen in other muscles on my body as they weakened with the damage from ALS. What is happening is that I am using these muscles a lot more as they weaken. As my biceps and other arm muscles are less able to do the work needing to be done, they try harder. Muscles get pulled, pain sets in. It's what happens.

What is new is the intensity of this pain, particularly in my right should. Almost all but the slightest of movements can make me wince, the stab shooting deep into my shoulder. Even the simple act of picking up a cup of coffee is enough to cause somewhat more than a twinge. The rotation of one arm over far enough to scratch the hand at the end of the other arm makes the muscles call out to me, saying "please don't do that". Adjusting my arms as I type this post causes a reminder.

The muscles in my arms have been weakening for a long time now. This is simply another stage in the process. I can still drive. I can still use my arms for the activities of daily living. All it means is taking painkillers like Tylenol or even T-3. Of course these painkillers interact with the other medications which I take, so I avoid them when possible. In the end, however, the pain is too much and I need the drugs.

I'll get through this; it will take a while. With ALS, injured muscles are slow to heal. My body is doing to much to keep other muscles alive; dying muscles don't get the signals they need to move enough so that they can rebuild; at least that's what I think. The doctors don't really know for sure. They just watch and evaluate. After all, ALS is supposed to be a painless disease.

Sunday, 22 March 2015

The Look

One of the really awful things about ALS is the texture it layers over everything I do. I can be in a beautiful place yet finding myself dealing with the anger of steps in the way or curbs too high. I can be with people I love and who love me yet find myself angry with them for not understanding, for not seeing. I can feel great, feeling the freedom as I drive along in my truck yet at the same time fighting with dead feet in the way and tired arms that won't cooperate.

Last night we arrived here at my brother Adam's place in Lake Charles, Louisiana. Above all else, Adam is a kind and gracious host. He is helpful and considerate to me every time I visit. We arrived late, at about 9:30 PM. While I rested, he, his wife Lisa, and Katherine unloaded the truck, bringing in all the gear needed to accommodate a visit by me. There's a lot more this time than there was a couple of years ago, the last time I was here.

We sat and had a glass of scotch, after which Adam said that he and Lisa were off to bed, asking if I needed anything before he went. I had transferred to the couch, so I asked if he might help me with the transfer back. He tried lifting me but I am just too heavy for that nonsense. Instead, Katherine grabbed the transfer board and slid my derriere up into the chair. Adam watched, and helped.

We then wheeled me into the bedroom where I made a poor attempt at getting into bed, once again calling on Katherine to help me with my legs, with the lift and flop. Once again Adam watched, and helped.

As all of this was going on, I was watching his face. He had not seen this version of me. I haven't visited here for almost two years, and a lot has gone on in that time. I don't look a lot different, except for the continuing shift of weight from my limbs to my belly; I'm fatter than last time. His expression, much as he tried to hide it, showed a lot.

I saw, reflected there in his eyes, the understanding that things had changed, were changing. He had what I call the "oh shit" look. I can't blame him; I have that feeling a lot. It's part of the overlay, the texture of ALS, that "oh shit" look. It's just another part of my reality, of his reality, of the reality of those around me. This is a progressive disease, even when it doesn't look like it. Things happen, and are happening, even in a beautiful place like Lake Charles.

Saturday, 21 March 2015

Living On Borrowed Time And Borrowed Money

Being on the road, on a budget, means eating at a series of low cost joints, places where the cutlery is thin, the plates are plastic, the tables are barren, the principal food ingredients are salt and fat. It means going to places where the main course is around $12 to $15, day after day after day. I've become familiar with Golden Corral, Shoney's, WhataBurger and every other kind of fast food joint you can imagine. I've come to know for certain that, when it comes to portion size, Tex-Mex from any one of a number of chains is probably the best bet.

It also means staying night after night in Motel6, Super8, Days Inn or any other place where the nightly rate is $75 or less, preferably down to $49.99. It means motels where the doors don't quite close properly, where the carpets show their age, where the room smells vaguely of antiseptic which makes you wonder what happened in there last night. It means dealing with taps that leak, low budget bed sheets, tiny room which make me thankful that I am only sleeping there for the night.

San Antonio has been completely different. I've blown the budget completely here, staying in the Homewood Suites on the Riverwalk, going out for dinner at a nice restaurant, one where they have tablecloths, where the waiters know and care about the food they serve, where the wine list has more than five items on it. I've spent more in the last two days than I did in the last week, tripling up on my hotel budget, doubling up on my food budget, going to a special Martini bar, having a beer beside the river.

It's been worth it, every penny. I realize that this last couple of days is coming back on me. It will force an even tighter budget later in the trip. I'll have to eat a few times at McDonald's or Wendy's, maybe even Jack In The Box, to make up the food budget. It will mean at least a week at $49.99 motes, the ones with cigarette burns in the bedspreads and cleaning staff who only visit the room rather than cleaning it.

I can live with some tough stuff; I do it every day. I can live with inconvenience; I do it every day. I can live with discomfort; I do it every day. But every once in a while, I have to treat myself, be nice to myself, take myself to a place where having ALS and being in a wheelchair are, for a moment or two, completely forgettable. And that means going over budget now and again, running up the Visa card, and trying to forget that I am living on borrowed time and borrowed money.

Friday, 20 March 2015

A Non-Driving Day

It is a non-driving day today, something for which I am thankful. Spending day after day behind the wheel, even the short days of just a few hours, is having it's expected effect on my arms. Last night was a toughy, with my arms and shoulders hurting and cramping, especially my right arm. There was almost no position in sleeping where my right bicep did not object, cramping up to remind me of who was in charge of this body.

This doesn't mean that I won't use my arms today. We are planning on exploring San Antonio, taking a walk down the Riverwalk, visiting the Alamo mission. All of these things will require moving about in my wheelchair. Fortunately Katherine will be with me, pushing me when I need the help. Even so, I will be tired tonight; this I know for sure. Just as I am tired after a day of driving.

It's not that driving is all that difficult. The long stretches of straight road, cruise control set with open lanes in front of me, the low scenery of the Texas countryside whipping past at an easy 70 MPH, all making for a quick passage of time and miles. Still, what you don't realize until you have something like ALS or some other condition which impacts your arm strength, is that there are all kinds of micro-movements as you drive, constantly readjusting your position on the road, changing lanes, following the sweep of a long turn, taking an exit road; all of these things require movement and strength.

I am grateful I can still drive, just as grateful as I am for a non-driving day. There is an empowerment in sitting high up in my truck, behind the wheel, where nobody sees the wheelchair, the handicap. There is a freedom to the open road, the next curve beckoning, the next horizon promising. Time almost seems to disappear as towns and cities roll by my window, a panoply of ever changing view, rising tall from the plains, settling deep in behind me as I pass.

Today will be a wheelchair day, a day when I will be pushed about or when I will push myself about, a day with elevators and ramps and curbs and cobblestones. My limitations will be more than visible, more than noticeable. People will wonder why I am in a wheelchair, why I am here, how I get around. What they won't know is the answer.

Thursday, 19 March 2015

Trickett Died Last Night

Trickett Fewell Wendler died last night. She died from ALS. Trickett was a young mother with three children and a loving husband. She leaves behind mourning parents and friends. I read an article recently where the author referred to ALS as a disease which primarily attacks older white males. Would someone please tell that to Trickett's children?

Trickett died from the ever increasing weakness associated with ALS. It took her ability to walk, to feed herself, to talk, to hold herself upright, to breathe. This is a vicious, slow moving beast which Trickett saw from beginning to end, her mind and spirit bright and alert right to her last breath. Now her husband cries for her and her children wonder why nothing could help her.

Yesterday I spent the day with friends and Katherine, exploring downtown Austin, Texas. We visited the capitol building and then wandered down the city streets to the South by Southwest festival. Rob, Terry, and Katherine took turns pushing my wheelchair, with me on board, around the capitol grounds and through the main floor of the capitol building. They pushed my wheelchair from there to the festival venues. They pushed me through the crowds, into the bars and restaurants, and back up the hill to where we were parked.

You see, I am resigned to being pushed a lot these days. ALS has weakened my arms just enough that the exhaustion of pushing myself around for the day sets in far too early, is far to powerful for me to resist, for me to deny that I need help. I can still move myself around pretty good; I can push my own wheelchair in most situations, except up steep ramps and slopes. It's just that I am approaching that weakness threshhold where I won't be able to any more.

I am fairly sure I can last out this trip. I wonder if it will be my last one. Of course, I wonder that with every trip I take. It's not that I won't travel. It's just that my travel will have to change, if it continues at all. Like Trickett, I can see tomorrow coming. I know what is happening. I can feel the changes in my body. That's just what happens with ALS; the train is coming and one day it will hit me full on, at low speed, crushing my life with weakness.

Wednesday, 18 March 2015

A Poo Story, And Not The Good Kind

If you are squeamish, this might not get the blog post for you to read. If bodily functions bother you, ditto. If poo stories are too much for you to take, ditto again. This blog is, however, a vivid insight into some of the more personal, intimate challenges that I face with ALS. Some of these challenges are faced by most of us; mine are just more complicated, compounded by the slow loss of muscle tone and ability. Oh, and this entry, to start with, gives me an opportunity to apologize to the cleaning staff at the Days Inn in Desoto, TX. I am sure they've had to deal with mess before; it's just never been mine.

To start with, I need to discuss a bit of a change which has happened to me over the last 6 months. For some reason, a reason I have now figured out by the way, I have developed a very strong stomach and lower bowel reaction to beers with a high malt content. This means some of my favourite beers, things like Kilkenney, Guinness, traditional ales and stouts, now cause amazing and explosive gas reactions within my lower gut. I know other people who have this reaction; it's new for me.

I've always had what some might call a "cast iron stomach"; very little can actually upset my tummy. I've never needed Tums or any other sort of acid control medications until ALS came along. Over the last two years I have lost my appetite for spicy foods and, of late, developed this volcanic stomach when drinking heavily malted ales. I am fairly sure this change in stomach has something to do with the witches brew of medications I take these days, some of which are known to cause gas, others of which are known to emphasize the effects of their co-prescribed medications. In fact that is that plan, that one drug is helped by the other. The gas part is not in the plan; it's just a pleasant side effect.

The other day in Dallas, Katherine and I had a beer. It was a lovely stout in a nice large glass. I figured I could handle one without too much side effect. Then Katherine couldn't finish hers and far be it from me to waste perfectly good beer. I figured I would have a couple of hours to deal with the effects. After our day out, we went back to our motel just outside of Dallas.

As I mentioned in yesterday's post, exhaustion hit me pretty hard when we got back to the motel. Katherine gave me a bed bath and said "go to sleep". She failed to say anything about underwear. I simply passed into slumber without moving, immediately. Unfortunately my stomach did not go to sleep. Sometime in the night, while I was fully asleep, deep in my exhaustion, my bowels decided that the gas therein needed to escape. I should point out at this time that, no matter what the doctors tell you, ALS does steal some of our muscular abilities from your ability to control your bowels. It happens, trust me.

Escape it did, with the full force and velocity that only an explosion can explain. There were chunks in the process along with a certain amount of liquid discharge. I slept through the whole process. It wouldn't have mattered if I was awake; I couldn't have gotten out of bed in any sort of timely manner to deal with this kind of event. Ask me how I know.

When I awoke in the morning, I sensed something was awry. My butt was stuck to the sheets. Once peeled free, I saw the extent of the damage. I asked Katherine for dry towels and wet wash clothes, which I then used to clean the sheets as best I could. Thank goodness there was a mattress cover; it needed changing too. I didn't look at the mattress; I'm hoping the cover did it's job. After that, it was into the bathroom to clean myself as well.

I was embarrassed at first until Katherine pointed out that only she and I were witness to this unfortunate event. After a while I realized there wasn't really all that much to be embarrassed about; this kind of thing happens to lots of people. The thing that bothers me, however, is that this kind of thing has not happened to me before, at least not like this. It frustrates me that the combination of medication, beer, muscle weakness, exhaustion and general failing health are at the root of this. Most of that can be attributed to ALS.

I won't stop drinking beer; I like it too much to give it up. I will, however, change the style of beer I quaff, shifting to those with less explosive results. It's a shame. I really like Kilkenny and traditional ales.

Tuesday, 17 March 2015

Bed Bath

There are two kinds of exhaustion that come over me with ALS. The first is the unexplained exhaustion, the tiredness that springs on me like a tiger, suddenly and without warning, forcing me to rest, to stop whatever I am doing and simply do nothing for a while. The second is the activity based exhaustion. This one is highly visible, highly predictable, slower to arrive, and just as powerful when it sets in, perhaps moreso that the first kind of exhaustion.

On Sunday I experienced the sneaky exhaustion, a tiredness that came over me in spite of a good night's sleep, causing me to pull off the freeway and rest for a half hour. Yesterday, I experience a significant bout of the activity based exhaustion. I just plain and simple wore myself out.

We had a terrific day yesterday, checking out Dealey Plaza, exploring historic downtown Dallas, seeking out a few enticing watering holes and feed stops. We didn't bother with the 6th Floor Kennedy Museum in the old Texas Book Repository. I had seen it many years ago; Katherine is not a fan of 2 hour line ups for anything. Nonetheless we took plenty of pictures and covered a lot of territory.

I "ran out of gas" fairly early on; Katherine took over "driving", pushing me around the streets and sidewalks, having a great time driving me into bumps and blockades along the way. We laughed a lot, spending time just being silly, and being tourists. Yet even with her doing much of the work of the day, My arms were sore and tired. My shoulders were sore and tired. My hands were sore and tired. My whole body was just done. I ended up so tired that I seem immovable once we finally made it home.

Katherine wanted me to have a shower, but I was too tired, far too tired. I could barely get onto the bed. At that point she looked at me and said "You want me to wash you?" I muttered something and she suddenly reappeared with wet and dry towels, stripped off my clothing, and washed me down head to foot, drying me afterwards. Then she said "Go to sleep." I followed her advice.

The is a new experience for me, the kind of exhaustion where I simply an unable to care for myself. I am expecting it will happen more. After all, it's a part of ALS. Nonetheless these new experiences continue to challenge me, continue to make me feel less than capable, less than I once was. On the other hand, who can say no to a nice bed bath?

Monday, 16 March 2015

Good Sheets

It's a rest day for me, a lazy day where getting up before noon just isn't going to happen, hasn't happened. Yesterday while driving from Oklahoma City to Dallas, about a half hour on the road, I began to get terribly sleepy. We pulled over at a gas station so I could rest. After about a half hour, I was ready to go again, still sleepy but rested. That was a warning. I can't just go without stopping; I needed a rest day.

We are staying just south of Dallas at a Day's Inn, not the newest motel around, nor the best place to stay, but it's on budget and reasonably close to the city. Plus it has a wheelchair bathroom. I find these kinds of places easier to locate here in the US as opposed to Canada. With consistent federal legislation, at least most hotels and motels are required to make the effort. They may do a bad job of it, but there is at least an attempt to make it work for those of us in wheelchairs.

One thing which cannot be legislated are sheets. I know this sounds odd, but the sheets on a bed make a big difference to me, to my ability to easily slide and move about. Low budget, industrial type sheets, the kind they use in lower budget motels, are generally "rough" finished with a low thread count. This means they have a lower moment of friction, grabbing and holding onto my body, making it tough to slide my legs up and down. Katherine has to lift them for me.

Higher quality sheets, such as the kind I have at home, tend to have a smoother finish to them, thanks to better quality fabric and a higher thread count. My sheets at home are 89% Egyptian Cotton with a 1,000 thread count. They are expensive. They are also excellent for me to sleep on. Even my "cheap sheets" are a high quality cotton with a 600 thread count. This means I can slide my legs on my own, without help.

This is a big deal for me, having sheets that allow me to sleep without needing someone to help me move about. It is another way my independence at home is built on the tools and devices which I cannot take on the road. We have my M-Rail, when we remember to bring it into where we end up staying. We don't have good sheets. I only find them in good hotels, like the Hilton Garden Inn we stayed at the other day. Now they had good sheets. I guess you really do get what you pay for, at least when it comes to hotel sheets.

Sunday, 15 March 2015

Oklahoma City National Memorial

When we arrived in Oklahoma City yesterday, my plan was to find a motel in the north of the city, check in and settle for the night. Then a funny thing happened. I felt like driving a bit further, suggesting to Katherine that we would get a place south of the city instead. In reality I felt good enough to drive all the way to Dallas; I think I have finally gotten over my "elevator" stuff.

As we passed the city, Katherine mentioned the Oklahoma City National Memorial, the memorial commemorating the 189 people who died when Timothy McVeigh bombed the Murrah some 20 years ago next month, it what was then one of the worst acts of terrorism in US history and is still one of the worst acts of domestic terrorism this country has ever seen. She said she wanted to see it; I said absolutely. So into town we went.

The downtown area of Oklahoma City is not all that large. While we didn't know where the memorial was, we did have our GPS, which promptly took us to the wrong place. We used my phone GPS and it managed to get us to the memorial site. We parked across the street. I took a few minutes to check out some hotel options; Katherine got out right away, crossing the street from our parking spot, immediately immersing herself in this experience.

It's hard to explain the feelings I had when I finally went across the street. The memorial has 189 "empty chairs", one for each person killed in the blast. The afternoon light was shining through the glass bases of the chairs, giving each its own glowing light. The long shadows cast a deepening hue on the scene, with the dark steel and granite becoming even darker with the low slung sun. The reflecting pond, the centerpiece of the memorial, took on a rich black colour in the shadowy light.

Each end of the memorial is blocked with a large entry gate with the time cut into the sheet black steel frame. At the west end, the time is 9:01; at the east end, the time is 9:03. The reflecting pond represents the time of 9:02, the exact moment of the blast, a moment we all should reflect on.

It is hard to imagine the mind that could conceive of this, of killing innocent men, women and children in the name of a poorly defined idea, in the name of personal anger, in the name of vengeance. It is harder still to imagine the mind of the person who could complete this act. Yet we all must remember that, even today, we are engaged in this same kind of killing, this same kind of terror. The only difference is that we call it a war. In any conflict, it is always the innocent who pay the highest price, as did the 189 people that day in April 1995.

Saturday, 14 March 2015


Nebraska; it's not a place I think about a lot, if at all. If you had asked me, before yesterday, to describe Nebraska, it would have been as one of those Great Plains states, like the Dakotas, Kansas or even Oklahoma, where the corn grows as high as an elephant's eye.

Yesterday was educational; Nebraska is part of the Great Plains, at least in the east. The western part of the state, however, starts in the High Plains, the setting for many a great western, the type where Clint Eastwood rides into town to the sound of iconic music, the sight of dust swirling, the rattle of buckboard wagon wheels, the snap of chained dogs lunging and barking.

We started our day on the edge of those High Plains, having come in from the north, missing the far west of the stated. Our drive found us slithering through the Sand Hills, like a rattler making its way around the dunes. This land is, as the name says, hills of sand barely covered by bunch grass, the widespread roots of which hold the thin sand in place. This land is not arable, at least not without ample irrigation, even though it sits upon one of the largest aquifers in the world, the Oglala. Our drive took us through these hills, to the edge of the rolling prairie, then down the Glen Miller Memorial Highway, of all things, to a town called North Platte.

I already knew about the Platte River. It is famous as the merger point, or jumping off point, for all the major settlement trails of the west. From here, settlers in wagon trains headed out the California Trail to the gold fields, the Mormon Trail to religious freedom in Utah, the Black Hills Trail to ranching and mining country, or the Oregon Trail to the rich farmlands of the west. It is a region steeped in settlement history, wars on the Native American tribes, railway greed and cattle battles.

What I didn't know was the scope of the forest in this area, stretching along the broad river valleys and beyond, edging the plains for mile upon mile, filled with now barren ash and oak, ready for the spring to come and leaves to spread their green. This vast forest, starting in the far north of the state with the Nebraska National Forest, seems to continue on forever, flanking the edge of the open prairie, rising high on the distant hills.

Then, suddenly, without warning, the forest ends and the plains once again take hold. Here in Nebraska the spring planting has begun, some fields already showing the brilliant green of new shoots. Spring is coming to Nebraska. Unfortunately, we are leaving it for Oklahoma.

Friday, 13 March 2015

Doing It All Over Again

I am having a slow morning this morning. Thank goodness the time zone here in Alliance, NE is screwed up. For some reason it's like Newfoundland time, a half hour different than everywhere else. Or perhaps we have crossed some unseen barrier, leaving us deep in the Twilight Zone. It doesn't really matter; I need that extra half hour this morning. Even now, as I type, my hands are shaking. ALS exhaustion never goes away completely, no matter how much you sleep.

Over the last couple of years I have had the opportunity to make several significant voyages. In those travels, I have been blessed with travel companions who really understand what this disease is doing to me. They've taken the time to slow down in the mornings, shown me the care and help I need with things like showers and bathroom, gone the extra mile in seeking out suitable accommodations. It's not easy traveling with a person who needs more sleep, takes longer to get up in the morning, has erratic eating patterns.

This morning is one of those, the kind of morning where bed just seems like a better option. Perhaps this is payback for all the earlier mornings of late, a chance for my body to remind me that it is still in charge, that I cannot tell it what to do any more. I'm getting there; it's just taking a bit more time.

Typically I get up at around 10:00 AM, or at least that is the plan. I dress, have some coffee if it is available, and then I write. All of this is with a plan to hit the road at sometime around 11:00 AM. With the 7 hour average road day I have planned, which includes an hour for a lunch stopover or perhaps some tourism, that means we arrive at our destination at around 6:00 PM. After checking into a hotel or motel, we are usually seeking dinner at around 6:30 PM.

Dinner can take anywhere from 20 minutes to an hour or more, depending on the place, the beer, and the service. A location close to where we are staying, one where I don't have to drive, allows for more relaxation at dinner. Dinner ends at 7:30 PM or so, and then it's back to the hotel or motel, where I need to rest for a bit then have a shower. Showering in the evening just makes more sense for me, especially when checkout is usually at around 11:00 AM.

By the time I am done showering and taking care of various skin care and grooming tasks, it is almost always sometime after 9:00 PM. I can relax for a bit, then it's time for sleep, usually at around 10:30 PM or so. I need to sleep for 10 to 12 hours, so it's always a bit of a push to get up in the morning. I make it, with the help of Katherine. She loads the truck while I get up and write. Then we are off to do it all over again!

Thursday, 12 March 2015

Mixed Feelings

Whenever I am away from home, after about three days it hits me, the homesickness where I realize I have "x" number of days before I get to sleep in my own bed, enjoy my regular life patterns, avail myself of my own wine and food. The smaller the "x", the less it hits. Last night it hit me hard. Thankfully I had Katherine to talk to about it; this makes it a lot easier.

Even though I am enjoying the ride, even though I have a tremendous amount of support for my situation, even though I have a wonderful woman helping me along with this voyage, I still feel the angst of enforcement for this trip. Sure, I had other options, all of them bad. This is the best decision in a difficult situation; a great many people agree with that. Yet I miss my home, desperately, and I continue to resent being away because of the elevator.

It's not all joy and contentment out here. Road food gets tiresome. Restaurants become all the same in a very short time. Life becomes a tedium of gas stations, bad coffee, uncomfortable beds, cheap hotel bedsheets, bad wine and days that start too early. This morning I was up at 9:30 AM; it seems I am getting up earlier and earlier now that I don't have my own warm bed to snuggle in.

Getting over this feeling will just take time. Soon, a few days from now perhaps, I will be enjoying the drive so much that I will forget about not being home. Soon it will seem normal to be sleeping in a different hotel or motel every night or two. Soon the road will become the habit and home will become the unusual. I already know that when I get home I will feel out of place at first, separated once again from my routine.

There are a great many good things about being on the road. There is freedom out here, escape from ALS in a strange sort of way. When I am on the road, especially when I am driving, I am just like everyone else on the road. Nobody sees the wheelchair; they see a big, tall guy in a big Ford F-150, jamming down the highway just slightly over the speed limit, often singing along to a tune on the radio or from my rather large selection of music on a USB stick.

That's what will make it better, having fun, singing along, enjoying the drive. That's what I will do today. That, and visit Mt. Rushmore.

Wednesday, 11 March 2015

Back To Sturgis, SD

The last time I was in Rapid City, SD was in August 1995. We had the T-shirts to prove it; they are all worn, faded or lost by now. My favourite Rapid City story is from the kids. We were traveling across the continent, headed home from New York, via Boston, Toronto, and Chicago, six of us in our minivan, towing our tent trailer. We stopped in Rapid City and found a local campground. We spent the night. In the morning Katie and Ricky went to the playground, returning a few minutes later to ask "Why is there a naked man in the playground?" That's when I realized we had arrived in South Dakota in the middle of the Black Hills Rally, an annual gathering of motorcycle riders, mostly Hells Angels, but plenty of others too.

The annual Black Hills Rally fills the town of Sturgis, SD with tens of thousands of bikes and riders for most of August. Officially the rally is the first week of August. In reality it is a summer long bacchanal that seems to start earlier and earlier each year. This year, for the month of August, Sturgis is expecting some 1.5 million visitors there to celebrate the 75th Anniversary of the rally. Katherine and I both got T-shirts; we won't be back in August.

I once rode a motorcycle, back in the days when I would stand up and walk. I actually had a bike before I had children. Then times changed and so did I. Shortly before I was diagnosed with ALS, I finally managed to acquire another motorcycle. Unfortunately I was only able to ride it a couple of times before my legs became so weak that I could no longer hold it up. I am amazed I even got those rides in, as my diagnosis followed shortly after, and the wheelchair shortly after that.

My life is kind of like this road trip, filled with unexpected changes, long stretches of sameness, sudden moments of excitement. Coming into Sturgis brought back wonderful memories of travleing with my kids, camping in our tent trailer, singing our made-up songs as we rolled along the highways of North America. I have always loved a good road trip. Even this enforced trip is fun. Yesterday we rolled across North and South Dakota. Today we will visit Devil's Tower, the mountain from Close Encounters of the Third Kind. Tomorrow, Mt. Rushmore and Crazy Horse. Then? Who knows?

Tuesday, 10 March 2015


To gain a sense of the size and scope of Canada and the USA, you need to slow down. It is the speed of your conveyance which dictates your sense of the landscape. In a jet, from Winnipeg to Calgary, you make the voyage in 120 minutes, a trip of 2 hours at 600 miles per hour. In a fast moving car, barreling down Highway 1 at the highest legal, and sometimes illegal speeds, the voyage can be made in about 13 to 14 hours, depending on fuel, food and bathroom breaks. If you wander a bit, take a detour here and there, follow the old trails, the car ride can take a couple of days. By Red River cart and on foot, it took months.

Yesterday we made the drive from Swift Current, SK to Williston, ND. We took our time, wandering first to the south, then east along the Red Coat Trail, the old route used by the NorthWest Mounted Police as they slowly fanned their way across the Canadian prairie, combating whiskey traders and railway drunks. It is a fairly straight line from Cadillac, SK over to Weyburn, SK, at which point we made the turn south to the US border, to an almost none existant town called Fortuna, ND.

The roads along the way were classic prairie roads, long and straight, cutting into the far horizon, with few turns and even fewer distinguishable landmarks along the way. Every 15 kilometers or so, a small town would appear, the differentiator in "small" being paved roads. A town with paved roads would be considered substantial in this landscape.

The landscape itself was largely unvaried, with low sloped rises, where the elevation change was measured in inches instead of feet. In many places the flat, open plain stretched infinitely off to the horizon, disappearing over its edge with no promise of return or change. The fields were a riot of beige, brown, gold, and even some yellow here and there, all of them waiting for the spring plow to turn their surface into straight rows of black soil, ready for the planting. This is a rich soil, ready to grow almost anything, and so rich that beneath its surface, deep beneath, there is oil waiting to be grabbed into the hands of a greedy society.

There is a beauty to this land, a soft and gentle beauty which gives the lie to the bitter cold of winter, the endless winds that blow year round, the harsh and heated summers. The farmhouses all have barriers of fir, birch, and aspen planted round them, creating a micro-climate free from the blast furnace winds of summer and the massive snow drifts of winter. Yet even in this defense, the weather wins. The soft colours of spring, the warm green of summer, the golden harvest of fall, the icy white of winter; it takes a special person to see the beauty in this land. They are called "farmers".

Monday, 9 March 2015

A Painful Night

It's 9:45 AM; I've already been up for two hours. This was not by choice. My early arisal was driven by pain in my left ear, or actually where the Eustachian tube from my left ear drains into my throat. Since childhood I have had problems with infections in my left ear, some of them being sufficiently bad that my ears would run with fluid. My Mom took me to the doctors who would say "We can't see anything when they are so swollen. Bring him back when it drains." Of course after my ear drained, these brilliant men of science would say that they couldn't see anything wrong.

For the last couple of weeks I have had one of those low grade ear infections, annoying but not troublesome. There has been a bit of mild, stinging pain in my throat, nothing substantial. I was doing what I have done for my whole life with these minor infections, waiting for it to go away. I learned a long time ago that antibiotics would do nothing; a best an Aspirin or two would help with the minor pain.

Yesterday something changed. The pain in my ear, where the Eustachian tube meets my throat, became increasingly uncomfortable. I took a couple of Tylenol; they seemed to do no good. As we wound our way across the rolling prairie, watching farms and small towns pass endlessly, the pain slowly rose, becoming increasingly uncomfortable as the hours and miles went by. From Calgary to Drumheller to Kindersley to Rosetown and finally to Swift Current, it got worse with each passing marker.

Yet with all of this, it wasn't bad enough to seek medical attention. The pain was bearable and these things usually go away. Only this time it didn't; last night the pain was sufficient to awaken me from sleep and keep me from returning to slumber. Finally, this morning at 7:20 AM, I said "enough"; heading over to the local Emergency ward, or as my children used to call it, "the nerg".

At the Cypress Hills Regional Hospital, a very pregnant young intern dutifully inspected my ear, nothing that it "look fine" from the top end. She didn't check inside my throat. Her analysis was that I had an inflammation, a low grade ear infection, one not requiring antibiotics. I should take a pain relief medication like Tylenol or Advil, preferably Advil as it works better with inflammation.

All of this morning excitement has left me up early, having had breakfast well before 10:00 AM, having finished my writing, or close to it, before 10:00 AM. Katherine is busy loading the truck while I conclude, then we are off to Williston, ND by way of Weyburn, SK. It's another day of driving across the prairie. Let's hope it is less painful.

Sunday, 8 March 2015

Day One - On To Swift Current

Katie and Katherine are loading the truck. I am expecting a couple of friends to be here at 10:30 AM to help me down the stairs. By 11:00 AM we should be on the road. The plan today is to head to Swift Current by the long route; up to Drumheller, then on Route 9 over to Rosemount, SK, and then down Highway 4 to Swift Current. It should take us about 7 hours, rather than the 5 hours it might take along Highway 1.

I awoke early this morning, well rested and ready for the day. Early for me is at 9:30 AM. Part of the driver for this was knowing that Katherine and Kate were to be here at 10:00 AM. I wanted to be dressed for them. There is a certain comfort and safety in knowing that if I hadn't made it up, Katherine would have helped me get ready for the day, without pushing me. She has a real understanding of what it is like for me to have to get up and dressed.

As it was, I surprised both the of them, being up and dressed when they got here. After a brief bathroom break, I was ready. This early readiness means I have time to write in the morning, not in the evening as I thought I might. I love writing in the mornings, a hot coffee by my side, the warm sunlight pushing its way ever northward as winter lends to spring. It's going to be warm today, even though winter is still officially upon us. We in Calgary are ever wary of this threat of spring; we know winter still lurks just off on the horizon.

I plan to enjoy this day, this drive through the coulees of south-central Alberta into the rolling great plains of North America, a land feature stretching from Canada's high Arctic, running all the way to the Gulf of Mexico. This fertile country has already begun to blossom, the native plants ready for any frost that still might make its way. Farmers are getting ready for spring plowing; this is the country where frost resistant wheat was invented.

The drive though natural beauty, where the edge of the horizon offers constant promise, where the haze of distant weather hides the sharp edges of the outside world; this is the kind of road trip where adventure is a promise and new things happen every day.

Saturday, 7 March 2015

Packing And Purging

I got up late this morning. Of course I got up late this morning; it's my last morning of lazing in bed doing nothing for the next 6 weeks. Hotels want you out by 11:00 AM, mostly. That means I have to get up at around 10:00 AM for the next six weeks; get up, get dressed, go! I think my blog will become an evening event for the next six weeks. Given the nature of my mornings, I doubt there will be a lot of time for writing. We'll have to see. I have it planned for writing, but planning and delivery are two completely different things.

It's packing time today. My buddy Dion came over for a bit; we had a couple of beers after which he hauled out my suitcases for me. Travel packing for me, particularly on a road trip, is somewhat more complex than you might think. Certainly there is the whole clothing thing; we all need that stuff. Then there are the mechanical aids I will need along the way; the M-rail off my bed, a transfer shower bench, an extra pillow for my wheelchair, a small step-ladder for Katherine, who knows what else by tomorrow. My last minute packing will be the laptops, my tablet, the GPS, and most importantly, my medications. Oh, and don't forget the camera bag.

This whole packing process is enlightening for me in more than one way. I've been looking at my closet lately, thinking about what I should pack. I've come to realize that I have a lot of clothes I will never wear again. Life in the wheelchair has changed my body shape; my belly is bigger, my shoulders remain wide while my arms get skinny, my neck is still as thick as ever, matching my skull I suppose. So shirts that once fit are now tight; pants that once were baggy are now too small; suits that once suited me no longer suit. I should just get rid of all of this stuff and start over.

I've done that a couple of times in the last couple of years, purging my closet of stuff that no longer fit. As my body has changed, so have my clothing requirements. These days my wardrobe almost completely consists of blue jeans and casual shirts, long sleeves for winter and short sleeves for summer. I don't even need socks; I wear compression socks all the time now. The only real constant has been boxer shorts; some of those have been with me for a while and they show it.

I'm taking a lot of stuff with me on the trip. After all, we are driving from winter to summer, north to south. We are likely to experience everything from snow storms to stifling humidity and heat. I've go the clothes to cover it all, assuming they fit. That's when the packing and purging meet, when what once fit, fits no longer. I won't buy much though; I won't need it for all that long.

Friday, 6 March 2015

Double Billing

I've just finished my Range of Motion exercises. These are the exercises performed on me three times a week - Monday, Wednesday, and Friday - by the Home Care Aides who wander in and out of my life. some just for one visit, some for many. In addition, these kind professionals help me with my shower, ensuring I can get clean and be safe at the same time.

My current HCA is a woman from Nigeria who has lived in Canada for about 5 years. Today is her second visit; she won't see me again until I come back from the road trip, at which point there may be another, new HCA in the mix. It happens a lot, that one person cannot provide consistent service, so there are usually at least two different care givers working with me at any given point in time. Right now, both of them happen to be women.

The woman here today is also doing my home making, the cleaning that is provided once every second Friday, in addition to my personal care and exercises. It's a bit of a push for a newcomer, particularly since the agency has it booked as a "combo visit" where the HCA is supposed to gain efficiencies in tasks to allow for a shorter booking for all tasks. In my case that doesn't work too well as the ROM exercises take the full allotted hour in order to complete them.

There are six separate stretches, each of which is repeated five times and held for 30 seconds.; Single Knee Bend, Leg Lift, or ballet dancer as I call it, Double Knee Bend, Calf Stretch, Trunk Rotation, and Thigh Spread, or butterfly as I have dubbed it. No matter how you do them, it takes about 45 minutes to complete them all properly.

With the combo visit, the HCA arrives at 12:30 to help me with my shower. By the time I am clean and dressed, it is 1:00 PM. Exercises take from 1:00 PM to just about 2:00 PM. Home making is supposed to take 2 hours, however it is booked under a combo visit to take place from 1:00 PM to 3:00 PM. Basically the two hours allotted for home making overlaps my ROM exercises by an hour. This is the time the HCA is supposed to make up through efficiencies which simply don't exist.

What all of this means is that my home making is rushed, and usually incomplete. Some stuff just doesn't get done. It also means the HCA works extra and is inevitably late for her next appointment. The final kicker in this house of cards is that the agency bills the government for two separate engagements, one for 1.5 hours and another for 2 hours while only providing 2.5 hours of service. Now I know where they make their profit. Oh, and I also get billed a supplement of $5.00 per hour for the home making; that's a bill I am slow to pay.

I am not complaining about my home care; it is, in general, excellent. I am not complaining about the HCA's; they are, in general, excellent, caring people. What I am complaining about is the double booking of time and the inherent lie within it. That just seems wrong to me.

Thursday, 5 March 2015

It Has Begun

The elevator work has finally begun; I am relieved. The inevitable has happened and I am rolling along just fine, only within the confines of my apartment. I don't mind it at all, now that it has come about. I want it to happen. I want the work to get done quickly. I want the refurbished elevator working when I get home.

There is a certain amount of freedom in being trapped at home. For instance, there is no reason whatsoever for me to put on pants, unless, perchance, someone comes by to visit. In that case, their might be a reason, depending on the visitor. There are folks who just feel better when I have pants on. Care workers, on the other hand, don't care what stage of dress I am in when they arrive.

Now that the elevator is out, the Home Care Aides who come tomorrow to do my exercises and to provide home making services will have to walk up the stairs. For some of them, this detour may be sufficiently distracting to cause them to be even later than normal. Fortunately there is only one more home care day until we hit the road.

Today is dedicated to paperwork, with the immense assistance of Katherine. I hate doing my tax paperwork. It has always been a chore for me, Over the years the task has become sufficiently emotional to bring me near to tears. There are probably a lot of reasons for this; in the end it doesn't matter. What matters is that, this time, Katherine is taking a great deal of this load off of me. I am grateful and relieved.

Tomorrow will be a cleaning day, preparing the apartment for a 6 week absence. Even while I am gone, Katie and Brad are going to come here, check on things, hang out. The place won't be completely empty, nor completely neglected.

Saturday is packing day. Sunday is when we head out. The next few days will pass quickly, hopefully without incident. Then the fun begins.

Wednesday, 4 March 2015

Let It Be

"Everything can be taken from a man or woman but one thing; the last of human freedom is to choose one's attitude in any given set of circumstances, to choose one's own way." Viktor E. Frankl

They have not yet begun to work on the elevator in my building. There are still signs up saying the elevator will be out of service starting on March 2nd, yet here it is March 4th and it appears as if no work has yet been done. I've just used it to go get my mail. I wonder how many other people, as I have, made plans around having or not having the elevator. How many appointments were changed, deliveries pushed forward, visits cancelled?

I worry about the change in calendar. Will they be a week late in starting? Perhaps two? Will I return from my road trip only to discover they have barely begun the work instead of the near completion I expected? Perhaps the reason they say "up to three months" for the out of service period is to allow for just this kind of delay. A good project manager would have this kind of risk buffer in the plan.

Yet with all of this, I can see the conundrum. Is this a bad thing or a good thing? I thought I would be trapped at home this week; last night I got out to Trivia at both the Unicorn and the Cat 'n Fiddle. Today I got my own mail. I still have at least some of my freedom, albeit hung under the threat of sudden loss of lift capabilities.

There are a lot of things in my life that could "get to me". On any given day there are people in and out, putting things in cupboards where I can't reach them, hiding things in closets where I can't find them. Home care workers leave the care plan book on my dresser instead of on my fridge, or forget to take out the garbage because they are in a hurry to leave. People park in handicapped spots without tags. People make right hand turns from left lanes. I can't lift myself out of my wheelchair anymore. I can't rack wine without help. Lots and lots and lots of things which could leave me angry and bitter.

Well, I like Frankl's approach. I will lose everything in this disease, even my life. Ultimately the only thing I will have left is my attitude. I do my best to keep it positive, upbeat. Sometimes I fail, spectacularly. Sometimes the anger and frustration get out, an avalanche of emotion. Mostly though, I take the passive approach; let it be, or find another way to get it done. For the elevator, I can do nothing to effect change. Let it be.

Tuesday, 3 March 2015

More Elevator Nonsense

Sometimes the threat of something is worse than the actual event itself. This is the basis on which a great many ultimatums are based, that the fear of the outcome will drive a decision favouring the issuer of the ultimatum. Other things, like my elevator, offer a different kind of outcome based fear.

The contracting company and the board of my condominium have posted a notice saying the elevator would be out of service starting March 2nd. That was yesterday, a day which came and went with no apparent work happening on the elevator. All day long the elevator was in service, working as it should.

"Great!"; you might think. "An extra day of freedom!"; you might think. Alas, not so. With the statement that work would start on Monday, I was essentially frozen into my apartment during the work day. My fear was that, should I go out, someone might appear while I was out and start working on the elevator, the first step being shutting the elevator down, effectively trapping me out of my apartment.

It's better that I should be trapped in my apartment than out of it. It's better that I should be cautious, not taking that risk. On the other hand, when the work day is done, the risk is more tenable. I took it last night, heading out for a bit after the close of the work day, hoping that nobody would come and start the work in the evening.

The elevator is still working today. Do I take the risk today and go out? Or do I play it safe and stay home? What about after working hours? I think I will go out tonight. It may be my last chance for a while, taking the risk that nobody will be doing night shift work on the elevator.

What all of this really means is that the elevator replacement project is already two days behind schedule, having not even started yet. Perhaps this extra week at home isn't such a bad idea after all.

Monday, 2 March 2015

Weak Arms

Over the last few weeks the weakness in my arms has seemed to be accelerating. It's a lot like what was going on with my legs in the summer of 2012, just a few months before I was diagnosed. I've seen a significant loss of strength and ability along with increasing soreness and shakiness in my arms and hands. I haven't said much about it, perhaps for the same reasons I was slow in dealing with the problem in my legs. Denial ain't just a river in Egypt.

The loss of strength in my arms has become highly evident in two daily activities in my life; transferring from my wheelchair to my bed, and transferring from my wheelchair to the lift seat on my truck. In both cases I have seen a significant decline in my ability to lift my body up. When transferring onto my bed, I am now consistently unable to lift myself past the wheel of my wheelchair. When transferring to my truck lift seat, I am finding it difficult to get more than one butt cheek up onto the seat; lately I've had to ask for help a couple of times, more often I have to haul myself up that last little bit.

My friend Mike once commented that he thought it would be the inability to get into the truck which would stop me from driving long before any weakness in my arms was substantial enough to cause me to give up the effort. It would appear that the engineer is right again. He sees things from a tremendously practical point. Sometimes I wish he would lie to me a bit more often.

This morning several things came together to make it a really bad morning. My arms and shoulders were sore, in pain. The weakness is increasingly making me more and more willing to just stay laying down. I had a rough night, with coughing fits coming on every couple of hours. All in all, small piles of dog poo on the sidewalk probably felt better than I did at the start of my day. It's these kinds of mornings where being dead seems a better deal than being alive.

I'm not quitting yet, not even close. I still have ability, and capability. I'm just getting weaker and weaker, my body failing as ALS would have it. But things are changing once again, as they always do with this illness. My arms are not done yet; they're just losing the battle slowly.

Sunday, 1 March 2015

Living In The Moment

This is it, my last day of freedom. Tomorrow morning at 8:00 AM the elevator in my building goes out of service for a minimum of 6 weeks, more likely something like 8 to 10 weeks, and worst case up to 12 weeks. It's difficult to express the tension I feel about this, the stress inherent in the known collapse of this pillar of my life, my ability to get in and out of my apartment.

I know I shouldn't be as worried about this as I am. I have a plan in place for the next week, a plan to spend some quality time here at home. I know I have a plan to break myself out of this un-elevatored prison for the six weeks following. That puts me right near the "most likely" time frame. It is highly possible that when I return from my road trip, I will find my building re-elevatored and all will be well. Yet I still feel the tension and stress keenly.

On of my friends put it best when he compared it to a prisoner out on bail, awaiting a jail sentence. The reality of the jail cell only truly strikes when you walk through the cell door. Up until then there is always the potential for something else to happen, some other way for things to go. Yet you are still under the stress of the impending sentence and incarceration. Tomorrow the cell door closes. Today my tension continues to rise.

The other side of this drama unfolding is the relief I will feel once the repairs actually get under way. As another of my friends said recently, "We will deal with the precipice once we get there. Until then, let's just see what happens." He is right; there is nothing to do but watch and wait. No amount of stressing or worrying will change anything; I might was well enjoy my life as it unfolds, not worrying about things I cannot change.

For tonight, I plan on going to a friend's place for dinner. We will enjoy good food, drink some nice wine, laugh and tell stories. I will have a fun evening, and like that prisoner on bail, the reality of tomorrow will come regardless. Living in the moment is the only way to deal with this stuff.