Early Start

There are things they tell you about having ALS that are absolutely solid, completely true and provable. There are things where they suggest that something might happen, that there are possibilities and probabilities. Then there are the things they either don't tell you, or tell you in whispered tones, or use words like "typically" or "in most cases".

With ALS, the first category of things they tell you doesn't happen all that much; the medical community just doesn't know all that much about ALS. The second category is stronger as much of what doctors do know about ALS is through case histories. The last category, the "typically" category, is where the bulk of things seem to happen. This is simply because each ALS case, beyond the broad parameters and some commonalities, is unique and unusual. That's why this disease is so hard to classify, treat, or cure.

One of the things they tell you is that, in most cases, ALS patients retain control of their bodily functions. In other words you are supposed to have control over your sphincter right up until the end. What they don't say is that bodily function involves a lot more than just that one muscle. Bodily function is an ensemble cast, not a single movie star; it takes a lot more than just that one muscle to manage the whole show.

Last night, or rather this morning, is a good example of this. Last night I ate something that disagreed with me; it might have been the steak, but I doubt it; it might have been the grilled vegetables, but I doubt it; it might have been the piece of Ponderosa Cake, but I doubt it. No, all my money is on the bowl of cherries I had later in the evening, my treat for the night. By the time I went to bed, the nasty contents of my stomach were already doing their dirty work. I rolled my way into the bathroom, transferred onto the toilet, wiggled out of my jeans and underwear, and eliminated the beast within me, or so I thought. Then I went to bed.

I awoke at 8:30 this morning feeling "uncomfortable". Now, when a normal person has an incident or some sort of discomfort where urgency is required, they get up and run for the toilet. For me, there is no get up and run. First I have to sit vertical, then I have to transfer to the wheelchair, then I have to roll to the bathroom, then I have to transfer to the toilet, then I have to wiggle out of my underwear. Then, finally, after what can be a rather long time when you are in a hurry, I can do what nature calls me to do.

This morning at 8:30 AM, there was urgency. I sat up, feeling that urgency. Then, to my chagrin and dismay, I discovered that it was simply too late. So I got up and had a shower, ripped the sheets off my bed, and started a load of laundry, with plenty of bleach. Fortunately my mattress is fine; at least something didn't go all that bad this morning.

I Flipped

I had an accident last night, a wheelchair accident. They happen; they are mostly not serious. Last night's accident had possibilities; it could have been very serious. I flipped over backwards while navigating a slope at the edge of a parking lot. Fortunately I managed to avoid banging my head other than the slightest amount. Unfortunately in doing so I twisted my neck, gave myself a bit of whiplash, and banged my left knee. None of these injuries are serious; all will pass within a day or so.

It's not all that hard to flip my wheelchair. The wheels are large, the bearings high precision and very free wheeling. The frame is light weight and the center of gravity is fairly high to accommodate my long legs and large body. All of this means it is very easy to roll too far backwards when doing a wheelie, or to flip backwards when pushing a steep slope.

The particular slope in question last night was the transition between the downward slope of a parking lot and the steep, compound up-slope of the edge of the road. Most of the roads in Calgary have steep edges to facilitate snow removal and rain drainage into the gutters. When you come to a transition from a sidewalk or parking lot, the transition from one slope to another can be quite dramatic, especially in a wheelchair.

The way I deal with these dramatic slope transitions is to try it head on, and if I sense a tipping point, then turn around and reverse up the slope. This way the force of pulling the wheelchair keeps the front wheels down while I go backwards up the slope. The tricky part is getting turned about safely. That's where things went off the rails last night.

I came down the slope from the parking lot and edged my way the smallest bit up the upward slope of the road. I have done this one before and knew I would have to turn about and go backwards. However each little bit of the slope varies from place to place, sometimes including both a vertical and angular or horizontal slope. In last night's case, there was a bit of a slope change right where I made the about turn. That change in slope was just enough to cause me to tip backwards, and once tipped I was gone.

As I went over backwards I twisted my neck so my head would not hit. Once I touched down, my legs came tumbling after, my left knee smacking into the pavement with a solid thump. I lay there for a minute, contemplating my situation, then phoned the pub for help. One of the waitresses just happened to step out at that minute as well, and in just a moment there were three people helping get back into my chair.

There was little physical damage, certainly no lasting damage. It was just another reminder of how much my life has changed in the last couple of years, how much of my ability to live now depends on the kindness of others, how easy it is for me to get into serious trouble. It will likely happen again; after all I don't plan on stopping any time soon.

Getting Up

I'm up. I didn't want to get up today. I really just wanted to stay in bed, not bothering to do anything today, not even bothering to get dressed. I just wanted to stay in bed, resting, taking it easy, sleeping. You see, the effort of getting out of bed, the effort of sitting up, putting on compression socks, pulling on clean underwear and a fresh shirt, struggling into pants; all of that just doesn't seem worth the end result of spending a day sitting in a wheelchair, only to have to get  back into bed in a few hours. It's just to much work.

This might sound a bit like depression and in some ways I suppose it is. After all, I have something to be depressed about. It's not just the ALS. I get to be depressed about my life in general, about not working, about running out of money, about all the stuff that comes with living. It's not that it's all bad for for; lots of good things happen in my life. I'm just saying that I could really be depressed if I wanted to be depressed. I am not, at least not a lot.

It's the whole balance of effort thing. The only thing on my to-do list for today, at least until dinnertime tonight, is to go over to the medical lab and get stuck for blood tests, something so routine that the staff know me by name. I don't even really have to do that today; I could do it tomorrow or Thursday or Friday or Saturday, just as long as I get it done so that the results get to my doctor by Monday or Tuesday. Oh, and I have laundry to do, although I still have plenty of clothes in my drawers and closet. Neither of these chores qualifies as urgent or important; neither brings me a great deal of joy.

I can understand why people let themselves get shut in, why people adjust to the slow lockdown of ALS. The effort to do things is larger and larger while the benefit of the things done is smaller and smaller. It takes a bit more effort each day to get up; it's a bit easier each day to just stay in bed.

Yet up and in my chair I am, sitting with my sore lower back and residual nerve pain from shingles, eating my egg and cheese for breakfast at lunch time, typing away. Did you know I can do this blog on my tablet while lying in bed? I can, but I get up anyway.

One Hundred Years

One hundred years ago today, a war began, a war which nobody thought would last all that long, a war which had no real purpose or intended outcome other than to show the demonstrable power of inept governments and the greedy, grabbing of those who sought to profit over the deaths of millions. It would become the war to end all wars in the propaganda of the day, the fight for King and country where young men marched off in an almost party-like atmosphere to become the dead heroes in the fields of Europe, east and west.

One hundred years ago today my grandfather, along with millions of other young men, was marched off into a battle that generals from the previous generation did not understand, where the political leaders thought in terms of empire and national destiny, where civilians died along with soldiers, all struggling to survive the bullets and bombs. Planes fell from the sky, artillery destroyed homes and houses, tanks crushed farms into mud. So many bullets and missiles were fired off by each side that even today, a hundred years later, they are still arising out of those many fields of battle.

One hundred years ago today, a war that began as an insignificant regional conflict escalated into a global bloodbath. It escalated because those who prosecute war could think of no other way to resolve their differences, because those who thought nothing of killing used men and women as shields and weapons to build their own power and glory, because the truth of this war and its real reason for escalation was hidden from the public who were instead fed stories and fables, lies and half-truths, so that they would become convinced of the need to kill their supposed enemies.

One hundred years ago today, a war began almost by accident, set in motion by plans frozen on paper and read by men too dimwitted to sense the ultimate outcomes, to set in their ways to see that there could be some other path, to determined that war was the only way.

I look around the world today and wonder how we could have learned so little, how we still allow our own greed and selfishness to drive us to commit horrible crimes, how we remain so easily swayed by lies and craftily designed tales to mislead. I look around the world today and shake my head in sadness, asking myself if belligerence and killing is perhaps the only thing mankind is really good at, asking myself if our true nature is to destroy and dominate. I look around and see such misery and ask myself what kind of world is it that after a hundred years still marches to the drum of death.

Self-Caricature

It's hard to believe that the sun is low in the western sky as my fingers hit the keys before me. It's been that kind of day; full, busy, active. I slept until about 11:30 AM this morning and on arising had to immediately leave in order to return Mike to his truck. He wisely drove me home in my truck last night, after my birthday party, where I drank far too much to be safe anywhere near the driver's seat of a motor vehicle. Right after getting Mike to his truck, it was off to a Brazilian Barbeque Buffet for lunch with a group of friends, immediately followed by meeting Brian and Tanya to pick out tuxedos for the groom and groomsmen for their wedding. Then, after a light dinner with them, I am at last home and typing.

Last night my friends and I celebrated my fifty-ninth birthday. It was the kind of party I really like; loud, social, and fun with plenty of food and drink. I sat there, enjoying the people around me, behaving as I usually do, loud and inappropriately. It still amazes me that these people tolerate me. Some don't, I know this, but my friends pretty much accept me as I am. It is up to me to decide just what that is, just what I am.

The cake last night was a good example of what I mean. It was your usual flat cake from a store, except for the decoration. The scene was a leering old man in a wheelchair, tongue lolling out, rolling hell bent for leather, chasing a buxom young nurse, her face contorted in terror as she attempted to get away. Underneath was written "Keep Living The Dream". The number candles for "59" had been inverted to say "95". It generated a laugh for all and even my daughter said "Funny and appropriate to you, Dad".

Then I started to wonder. Is this my legacy? Is this what I have become, a caricature of a leering old man in a wheelchair? Is this what people will remember when I am gone? It's not what I want them to remember. I want them to remember the kind, generous man who was more interested in building community than building for myself. I want them to remember the humourous and intelligent man who could help them solve problems and achieve their goals. I want to be remembered as the man who made life better, just by being here.

I thought about that all day today, about that cake. I thought about what it meant, how it felt. I thought about my friends who pretty much all agreed that it was on the mark. It's true, I guess, that I am pursuing life very aggressively these days; I don't have enough left to waste it. It's true that I am not always the most appropriate man in terms of social convention or commentary. It's true that I will never stop chasing the dream. I just have to get used to the idea of being my own comic strip character.

A New Lift System

I have a new piece of hospital equipment in my home; a HumanCare Singel 5100 NA Track and Lift System installed firmly above my bed. This systems consists of a steel mounted track firmly bolted to the joists in my ceiling and a hoist lift that rolls freely inside the track. The "system" is designed to lift 450 lbs., about 220 kgs. Since I weigh about 245 lbs., it should work nicely, lifting me easily out of my wheelchair and into my bed.

I say "hospital equipment" because that's what it is. The documentation talks about the patient and the caregiver, implying that the caregiver will always be the person operating the system, and the patient will always be the passenger, not the driver. The documentation talks in very clinical terms about the safety issues, the protective shut-off switches, the "soft landing" in the event of a power loss or emergency.

This kind of care is inevitable in my future; I just don't need it right now. The reality is that I will need it; I will need the caregiver to operate the system, safe handling and soft landings. I will need all of these things one day, in the future, just not right now. Right now this is another reminder that my home is slowly becoming a care centre, that the place I live is being medicalized.

It is distressing to see this happen, to see more and more of my life dominated by medical equipment, knowing full well that there is more and more to come as ALS steals more and more of my life. Now, every time I look up from my bed, I will be reminded of my up and coming limitations, the thefts that await me.

I know I should be grateful for this equipment. After all, the government paid nearly $2,500 of the $2,800 cost under the Alberta Aids to Daily Living Program. I know there is absolutely no doubt that this will be an important piece of equipment in my life all too soon. I know that it is better to have it sooner rather than later, so I can get used to it and discover how to use it to make my daily life better even now. I know that people who know more about ALS than I do said this would be a good idea.

I just don't like it.

Being Paraplegic

I am a lot of things; loud, boisterous, annoying, funny, helpful, kind, generous, and perhaps more things. One thing I don't say often about myself, however, is that I am a paraplegic. It's a word I don't apply to myself all that much, mostly because this is a new situation for me. I've only been "para" for a bit over a year now. My progression to this state was slow, I had time to get used to the condition. I've just never had much time to get used to the categorization.

My legs don't work. I cannot stand. I cannot walk. I cannot move them in bed or get up on my knees or do anything with them at all. By any definition, this is paraplegia. I did not get this way through accident or misadventure. I got this way in tiny little increments until one day I was fully here. The next stop in this process for me will likely be quadriplegia, more technically known as tetraplegia. That's what I will be when my arms no longer work.

Being a paraplegic has special health considerations that go with it. The lack of motion in the legs can lead to pressure sores, sometimes called bedsores, thrombosis (I already got me one of those), and even pneumonia. I need a lot of physiotherapy and mechanical aids, both large, like my wheelchair, and small, like the M-bar on my bed and safety bars in my shower. Today a new mechanical Aid to Daily Living, or ADL, is coming into my life.

The folks from MediChair and the ALS Society are combining to install a lift system above my bed. Getting into my bed is one of toughest things I have to face at night. Getting vertical is almost impossible; what I do is a straight lift out of my wheelchair where I force myself vertical enough such that a slight rotation allows me to slump onto the edge of my bed whereupon I push myself further on to where I am reasonably safe from falling out. The purpose of this new lift system is to relieve me of that strain, to pick me up and slide me gracefully onto my bed.

Of course nothing really works the way it is supposed to when you are a paraplegic; nothing slides easily, nothing lifts gracefully, nothing is simple. What they are really doing, at this time, is getting ahead of the tetraplegic problems, preparing for a time when I will no longer have the strength for even the easiest of transfers. In the mean time, I am supposed to use it, to learn how to use it, and to get used to the idea of it. There is another machine coming into my home; we are slowly turning it into a care centre.

That's what it really means to be a paraplegic with ALS.

Management

I am up early, at least early for me; the pain did it. It's not even 10:30 AM and I have already eaten breakfast. My usual morning meal these days, most often had sometime around noon, is a hard boiled egg, a slice of cooked ham wrapped up with a slice of Swiss cheese, one of those BabyBel cheeses, and a cup of coffee. This morning it included a little extra, a couple of Ibuprofen. I am hoping these over the counter pain medications will help with the pain from shingles.

I've decided to stay away from the more powerful pain killers within my ample medication collection. The Naproxen is more targeted towards dealing with muscle pain, such as cramping or pulled muscles. It is not terribly effective on the nerve pain. The Percoset is just too scary to contemplate taking for more than a day or two. I try to stay away from the real powerful stuff; it's just too good and I can see no beneficial outcome from using a lot of it, at least not at this time.

Managing medications is a part of ALS you don't hear much about. I have a whole bunch of them, some related to my heart attack, some related to blood pressure, some related to my DVT, some related to my emotional lability and some just for general stuff. Each morning I take about five different medications. My evening medication list is shorter, only two separate medications but the warfarin is a multi-dose, usually two or three pills. For a disease with no known cure and no effective treatments, there's a lot of associated stuff to take. I took a few of these pills before ALS; I take a lot more now.

Then there is the physio-therapy; the stretches that I get every Monday, Wednesday and Friday. These stretches are intended to keep my muscles from shortening up or freezing altogether. They make a difference, so I plan on staying with them for as long as they help. At some point, however, it will become pointless. Then, I will stop.

All in all, there is a lot to manage with ALS, both from a medication and pseudo-treatment point of view. On top of it all, there are the mechanical issues too. I just got a call; the suppliers want to come in and install my lift track tomorrow. More stuff, more changes, more to manage. This being sick is a full time deal.

Three Kinds Of Pain

The pain has not been quite so bad today; the shingles pain is still right up there by I don't seem to have a lot of ALS related pain. Yesterday shingles was attacking the lower left quadrant of my trunk while ALS attacked my arms, shoulders and neck. Today it's down to shingles alone, still painful enough to make me want to stay in bed all day but not quite as bad as when in combination.

What I did learn today was that it just won't work to have range of motion exercises while I am dealing with shingles. My care worker came in and we tried a couple of different stretches. The pain rose in waves, taking it from uncomfortable to awful while she moved and held my feet and legs. I asked her to stop; she did. Two simple motions for the day and I was done. I stayed in bed as she did some homecare work and then left. I stayed in bed, sleeping, thanks to advice from Anita. Sleep works, it works well.

The whole shingles pain is not one kind of pain; it's actually three kinds. The first is the internal muscle pain in those muscles directly along the line of, and beneath, the affected nerve. The muscles are constantly clenched, sometimes loosely and sometimes twitching to full tightness, causing the rest of me to twinge and wince. This pain is bearable, rather like having hurt your back lifting something overly heavy. It's constant and mostly low-grade except for the momentary flareups that come along every 10 or 15 minutes. Then the vice tightens and the pain level spikes.

Then there is the nerve pain itself. Oddly enough ALS has taught me the difference between muscle pain and nerve pain. If muscle pain is a vice, nerve pain is a blazing knife, searing its way along the nerve path itself, as if the nerve was being zapped by a precisely followed electrical current path. It kind of makes sense, given that nerves are exactly that, electrical pathways. This searing, transient pain happens every hour or so, but when it does it completely immobilizes me, sometimes momentarily and other times for a minute or so. It is intense, running hard and fast, lightening in miniature. The underlying muscles seize and I groan.

Finally there is the pain of the blisters on my skin. In milder cases they are simply itchy. Mine are mostly like that except for a few spots where they evince a kind of stabbing, burning pain, rather like I would imagine a hot poker touching and stabbing into me. They surface lesions hurt like this mostly when contacted, but sometimes they just do it on their own, seeking to remind me that they have their own nasty part to play in this drama.

Take all three together and it is hard to relax. Painkillers help. Beer helps. Scotch helps. Sleep helps. I think that's my plan for the next week or so.

Another Day

I am in a fair bit of pain today from shingles, that marvelous illness born out of a virus laying dormant in my body since childhood chicken pox. The muscles beneath the affected nerve just plain hurt, twitching every once in a while, all on their own, reminding me that some parts of me are still viable, and can still be attacked by other illnesses. I hurt a lot.

On top of the pain from shingles, there are the normal aches and pains in my life. ALS does not directly cause these aches and pains. They arise as a result of weakened muscles trying too hard, or due to odd sleeping positions because by legs don't move, or simply because it's there. These aches and pains are manageable on their own; I can live with them. Adding the shingles pain, however, really saps my spirit and what limited energy I have within me.

This morning, for the first time ever, I wished I had someone here to help me get dressed and get out of bed. This morning, for the first time ever, I felt like I needed help, real help, with getting into my daily life. It took all I had within me to finally gain the momentum needed to start my day. This feeling of submission is without doubt fully attributable to the pain I feel. The combination of ALS and shingles really got to me this morning. I feel like I am a metal bar being slowly beaten, struck by the hammer of destiny against the anvil of life, bent into shapes I do not desire.

I am not depressed, just worn out, like an old horse too long in the traces. My body is failing me inside and out. Pain is exhausting. Fighting on while in pain is exhausting. Soon I really will need more help; soon the hammer will shape me completely and I will be done. For now, I just have to get up and keep going. That's all I really know how to do. It is not in my makeup to stop. It is not a part of my ethos to give up. I am just that way; I just keep trying. Today I am going to try to make it through another day, that is all.

My Wish Fulfilled

Fifty-nine years ago today, in a sleepy little provincial outpost on the western shores of Canada, in a town dedicated to government and the local naval station, I was born; July 21, 1955. I am one of the millions born in that self-absorbed generation known as the Baby Boomers. In fact I was born halfway through the baby boom; late enough that the demands for everything were already on the rise, along with prices to match, yet early enough that the bigger schools, new curriculum and better books always seemed to be coming a year after I needed them.

There was no media explosion announcing my arrival; no paparazzi standing by the door waiting for a picture. I was born an ordinary child in an ordinary time in an ordinary way. My father, as was custom for the time, wasn't in the room, helping my Mom along the way in her second delivery. At least he was in port; when my brother Adam was born, my Dad was in Australia, away at sea with the Canadian Navy. In the 1950's, our society had successfully medicalized childbirth, taking it from a family event to a doctor and nurse event. In that hospital room, surrounded by people she barely knew, my Mom, at age 23, delivered her second of five sons, the remaining three to follow me in quick succession.

Now, fifty-nine years later, I am supposed to be celebrating, supposed to have a "Happy Birthday". Parts of my body are 59; other parts feel a whole lot older. Still in many ways I am very happy, surprisingly happy. You would not think that a man struggling against illness and pain, having lost so much and seeing so much yet to lose, would consider himself happy. I can tell you there are moments, sometimes whole days, when I am not happy, when I wish this whole process would be over. I can also tell you that there are a great many more days when I find joy and pleasure in so much that is around me. My birthday will be happy, because I want to be happy, because I will find the reasons for happiness in this day, and in all days until my last.

I am not much on birthday wishes. Mine have never come true, mostly because I consistently wish for the impractical and impossible, wanting what I cannot have. I can wish for a cure for ALS, not just for me but for all PALS. I can wish for the aches and pains to stop. I can wish to walk and run. None of this will happen. Instead I will enjoy the company of friends and family this week. That will be my wish fulfilled.

Two Ends Of The Road

There were no flames yesterday, no fires burning on distant mountainsides, no lone pines candling in to heat driven whirls, no giant dark clouds of ash and smoke, no smell of burning forest. Instead... it rained, at least where I was, a rain that started with a threat as I left Abbotsford, turned into a deluge up the Coquihalla, took a rest through Merritt, resumed in the Shuswap and continued all the way home from there. It was the kind of rain you only get in the meteorological extremes within the high peaks of Canada's great western mountain ranges. It ran the gamut from gentle drizzle to a deluge of biblical proportion; the mere threat of moisture was enough to bring most of the fires under control and the fact of rain took care of a great many more.

The changeability of our mountain climate is always a surprise, an unwelcome one to those not prepared for it. Campers who only a few days ago basked in record temperatures in the low 30's Celsius now huddled in their trailers and tents, beneath their tarps, bundled up against single digit cold. The rain washed through campsites and pushed mudslides across highways. In sites throughout this wilderness holiday land, people eyed with suspicion what would have been a mere babbling brook a day ago, now turned to a rising, turgid, turbid torrent whose colour resembles that of a Timmies Double Double and whose power now turns to smashing rocks and toppling trees.

I made it home yesterday, from my home across the mountains and far away to my home across the mountains and far away. I am a man torn between two loves, separated constantly from one or the other by a drive of a mere twelve hours along a strand of road weaving its way through some of the most immense country on the planet. When I am in Calgary, I yearn for those I miss in Vancouver. When I am in Vancouver, I yearn for those I miss in Calgary. To leave one is to want to return, no matter what my direction.

In some ways, I am the luckiest of men. I have, no matter which home I am in, friends and family who not only love me but encourage me to be with them or away from them. I have, in both places, tremendous support and care. I am loved in both places, with no jealousy one for the other. All I have to do is choose; that's the hard part. To choose one is to miss the other.

I will make the trek again, soon. I will make the trek back again, soon after. Then one day I will be unable to make the trek. Then I will consider myself unlucky.

Driving Through The Flames

I am headed home today, or at least as close to home as I can get. It is the height of the summer forest fire season, along with the summer vacation season, the fires across the province ripping their way through the tinder dry forest floor in so many places across this province. It is not unusual for roads to be so choked in forest fire smoke as to make them nearly unpassable, the drifting ash and smell causing traffic to move at a the pace of an overweight shopper in rural Alabama moving through the Walmart discount ice cream section.

What should be a 12 hour run from Abbotsford to Calgary could become a two day affair, the challenge being finding a hotel in Revelstoke or Golden amidst all the other road trippers facing the same obstacles. I will make it, moving carefully amongst the maddended crowds driven madder by the smell of forests aflame, they having stopped to see a hillside burst into flame or a pine tree candle into an incendiary whirling dervish. I will make way for the fire crews, stop for the forestry barricades and do that which I am commanded by local officials, all in an effort to be a good, cooperative Canadian traveler.

In fact the biggest difficulty in my day, the thing that is becoming the bane of my existence, is the hotel checkout time. As I become more and more prone to sleeping until 10:00 or 11:00 each day, I consistently run into the hard stop, or rather the hard start, demanded by the hotel wanting access to my room so they can prepare it for the incoming guests to follow.

My usual response these days to the demand of a hotel checkout time is to call the front desk and ask for a late checkout. I explain my wheelchair issues and packing issues; in most cases hotels are quite willing to give me an extra hour or two, sometimes even more. All of this means that in most cases I can leave at around noon with limited consequence other than that of my travel plans.

I did that this morning. I called the front desk. The young man at the desk checked with the manager, subsequently assuring me that a noon checkout would be fine. He then said "Thank you, Mr. Richard." It is an expression of thanks I often hear when traveling in the Middle East or Asia, places where your family name is usually your first name; it is not something I hear in Abbotsford, BC, Canada. It reminded me once again that the town which was once my home has changed; it continues to experience massive changes in the immigrant population, new Canadians bringing new ways from their country of origin to their country of choice.

I wonder what these new Canadians think of summer fire season here in BC. I wonder if they know how big this place really is, how many forests can be ablaze at the same time, how many homes will be threatened and how many vacations will be interrupted. I suspect not. They need to do a road trip as a part of their visa permit requirements, just to get a sense of it all.

Sleeping On The Couch

Some sleeps are better than others. Sometimes you sleep in odd places. Last night, for example, I slept on the couch in my hotel room; I have the handicapped suite at the Sandman Hotel in Abbotsford for a couple of nights. It has a living room; the living room has a couch, not a hide-a-bed, a short, hotel sized five foot couch. I scrunched up and slept on the couch so that my daughter Mary, along with her daughter Rose and son Quinn, could have the bedroom. It was worth every bit of discomfort; I actually slept reasonably well, especially after a few beers with my son Rick.

Yesterday, on a moments notice, I said to Mary, "Why not come to the mainland with me? Rose can see Charlotte, you can see Meaghan and Ricky, and my Mom can see Quinn." I have to give the girl credit; she, almost without a breath, said "Yes". I took her home and she packed while Rose and I went for ice cream. Then, with planning happening as we drove down the road, we headed for Abbotsford, stopping along the way for a wonderful visit with Mom and Ray.

Later today, my daughter Meaghan, along with her husband Lewis and daughter Charlotte, will join me along with Mary and her children, for a picnic at Rolley Lake, a park and small lake near where I lived as a child, a lake where I went fishing, where I took my own children picnicking and fishing, where they take their own children for walks, exploring the same places I explored and they too explored. Later in the day I expect my son, Rick, will come to the lake as well, joining us for our afternoon together. It will be the first time I will get to see all of my grandchildren together, to see them play with one another in a continuation of a pleasure that began nearly fifty years ago for me.

This is the kind of day I live for, the kind of day that comes so rarely. It is a day where my children get to enjoy each other without the many stresses that make up their daily life, a day where I get to see my children and grandchildren play, to hear them laugh, to talk with them and share their life. This is the kind of day that makes ALS seem like a minor inconvenience, that my own issues disappear under the pleasure of family. This is a day that would qualify as "reasons to live", something all ALS patients think about on a daily basis.

After my day with my children, I will meet up with my brother Peter; perhaps Ricky will join us too. We'll talk, laugh, and tell more stories. It will continue the theme of family that will make up my day today. This is the real reason I took this trip, to live once again my life as a Dad, brother, and son. This trip is about my children, grandchildren, parents and brothers. It is worth every bit of discomfort, even sleeping on a couch.

Painful Sleep

I hurt this morning. Of course I hurt every morning to some degree or other; it's just a part of having ALS, that my muscles complain perhaps more than most. It's not pain, my usual mornings, it's just ache. This morning, however, it's close on to what I would call pain. It's from shingles. There is a surface pain wrapping itself around from my back to my belly button, a kind of contact discomfort constantly lying there waiting for me to feel it. It's also there when I move about, shifting in my chair or getting up and down.

With this discomfort, sleep was not easy last night. In fact sleep has been getting increasingly uncomfortable since all of this started on Monday. I barely noticed it Monday night. Tuesday it was definitely there. Last night it was a full on struggle to get comfortable for any length of time. It's fortunate that I prefer to sleep on my right hand side, in a prone position. The shingles attack is on my left side and it is the nature of this virus to attack only one nerve strand, rarely if ever transecting the stomach.

I cannot sleep all night in one position; only the fully paralyzed do that, and I am not there yet. So I move about in my sleep. Unfortunately, with dead legs, moving about is not all that easy so I am often up at night manually readjusting my legs. Now, with shingles on my leg side, I cannot shift that way without paying for it in discomfort. The best I can do is get on my back a bit and favour my left side. That means even more wakefulness as I adjust various leg positions to find what comfort I can.

Last night I was up at least a dozen times, or rather awake at least a dozen times. Unfortunately the effort of manually moving my legs often triggers my bladder, so moving really does mean sitting up. I am grateful for my jug at this point; I cannot imagine the exhaustion of repeated transfers to and from my wheelchair to go into the bathroom, then the transfers to the toilet and back. I don't do this; I use the jug. Even with that convenience, I was still up an awful lot last night.

I am up for the day now, soon to be checking out of the hotel. I will grab a road breakfast from some fast food joint, savour a bad cup of coffee, watch my grandchildren play in a nearby park for an hour or so, then head for the ferry to the mainland. I will find a hotel and see if I can sleep better tonight. Maybe, maybe not.

Shingles

I have shingles; no, not the kind you use on a roof, the medical kind where you get sharp muscle pain and a painful rash on the skin under attack. Shingles, the medical kind, is a result of the same virus that causes chicken pox in children. In fact you can only get shingles if you have had chicken pox or have been vaccinated against chicken pox. They started in the middle of my back and have spread in a wide band around my waist, stopping at my belly button. This is the nerve under attack.

The virus that causes both chicken pox and shingles works like this; first it gives you chicken pox, then it goes to sleep, then for some unknown reason it wakes up and attacks once again only in more localized fashion. After the body defeats the virus in chicken pox, it goes dormant, finding a nice, cozy resting spot along the spinal cord nerves. There it sleeps, biding its time. Then, in about 25% of people who have had either chicken pox or the chicken pox vaccine, it awakens, travels down a nerve pathway to the skin causing pain along the way, and creates an itchy, blistery, puss-filled rash on the skin that usually lasts a week or two.

Doctors don't know what causes the virus to re-awaken although they suspect age, stress or a generally reduced immune system are part of the puzzle, the reason, most likely, it is prevalent in older patients. Doctors do know that it is a neurological condition; in other words it is an illness that attacks via the nervous system. Once present there is little the medical community can do except wait it out, treating the symptoms such as pain and itch, offering little to defeat the actual virus. What medications they do have offer limited results but we use them anyway, hoping for some benefit such as reduced attack or slowed spreading.

If all of this sounds familiar, it should. ALS is like that too. Doctors have some idea of what might cause it, but they have no idea as to the why of ALS. It is a neurological condition, attacking the motor neurons. Modern medicine can treat some of the symptoms but cannot treat the core illness. There are medications that may slow ALS down, treatments with limited effectiveness. The comparisons end there but are interesting nonetheless. We know so little about the nervous system and its illnesses. Now I have two of them, two neurological illnesses.

Yesterday when I was diagnosed I was fairly distressed about this. Having had a night to sleep on it, quite literally, I am less distressed, although more uncomfortable. The itching has begun though the muscle pain seems to have gone away. I have discovered that I cannot give shingles to anyone else; if you have the virus within you, you can get shingles. If not, not. I can, however, transmit the virus through contact between the sores on my skin and another person.

All of this means can still cause chicken pox in children who are not vaccinated, children like my new grandson Quinn. So having driven some 1,100 kilometers over two days, I will be able to see him from a distance but will not be allowed to touch him. Rose is fine; she has been vaccinated. In other words, with or without help from me, she can get shingles, most likely in her 60's, well after I am too long gone to be responsible.

A Tale Of Two Burgers

One of the great, and terrible, things about a road trip is eating on the road. Road food, the likes of burgers and snacks, is inherently unhealthy. It is a completely disruptive combination of fat, sugar and salt in almost all serving sizes. It is bad for you, in so many ways, and yet we live on it while we travel. The only respite is when we stop at a decent restaurant for something vaguely resembling a salad. Fast food may be easy to deal with but it is murder on the waistline and so many other parts of our body.

On the other hand, fast food is just that - fast. It is an easy, simple solution to the hunger pangs that attack after a few hours on the road. It is designed for eating from the hand, packaged for maximum consumption efficiency, so that you can keep driving with doing something simulating dining. Road food is the perfect fit for holding a burger in one hand and the steering wheel in another, unless, of course, you use hand controls in your vehicle. Even with this impediment I can assure you that eating and driving is still moderately possible.

Yesterday, however, I enjoyed both ends of the road food spectrum, both of them a burger, both of them reasonably decent burgers. Having left Calgary at about lunch without actually eating any, by the time I did the three hours to Golden hunger pangs were beginning to show. I pulled in to the A&W and ordered one of my favourite unhealthy meals; a Mozza Burger, Onion Rings, and a Root Beer. It is possible to eat a worse combination of foods; I'm just not sure how.

I consumed this burger at my usual pace, inhaling the over-sugared bun, the over-salted patty, the sweetened condiments, the processed mozzarella cheese and the pale imitation of lettuce and tomato included therein. The onion rings disappeared with equal efficiency as did the root beer, all settling into my stomach, intent on producing the food induced coma that can only follow both rapid and unhealthy consumption. It worked; I stopped in Revelstoke for a half hour nap, followed by an iced coffee.

Once back on the road I made my way to Kamloops and checked into my budget priced roadside motel. I chose this location because it advertised an onsite restaurant and bar. Dinner and a beer sounded wonderful. However the onsite restaurant and bar was the White Spot across the heavily sloped parking lot. I rolled downhill to my dinner, knowing full well the uphill later would be the real price.

At the White Spot, I ordered my other favourite burger meal of all time; the Monty Mushroom Burger Platter. This delicacy comes with real Monterey Jack Cheese, sauteeed mushrooms, the usual lettuce and tomato, and the secret White Spot Triple O sauce which I am sure is also over-sugared. I ordered the well-salted fries and gravy, with a beer on the side. I sat down to eat, slowly savouring my meal, even pausing between bites. I even ordered a second beer just to wash things down. I relaxed and let the food settle in, taking my time and girding myself for the uphill slog to bed.

I had two hamburger meals yesterday, twice the content of most of my days. I ate one in a hurry, while driving. I at the other at my leisure, slowly savouring each bit. Guess which I liked better.

Road Trip

I am about to head out on the road again, driving from home to Vancouver, a distance of some 600 miles or 1,000 kilometers, depending on your age and location. I will visit with family and friends for a day or so, then head off to Victoria to see my newest grandchild, along with his older sister. One the way back I will visit with my other grandchild. Oh, and I will see my children too. They are, after all, a part of the deal.

Some of you might be asking if I am ever at home, given all the traveling I have done lately. The answer is yes; I am at home in the winter. Here in Canada the summer road trip is a national pastime, one where millions of people cram too much gear into cars that are too small, jam children and dogs in with them, then clamber into a crowded front seat to head off to places known and unknown, in search of escape from the winter they know is coming. I will have plenty of home time in the months to come; right now it is road trip time.

There is even an economists term for it; the summer driving season. It is a season all too short here in this country, starting on July 1, our national day of celebration, and ending on the Labour Day weekend in early September, the day when we try not to work in order to celebrate the dignity of the working person, a day that most children see as the end of summer and the beginning of school imprisonment. For two months the roads are crowded with angry parents, crying babies, dogs hanging out of car windows and long lineups at the gas pump. It is a glorious time of year.

There is another, darker reason why I am traveling so much these days. I am not going to get much opportunity for it in the future. As my condition deteriorates, I will be spending more and more time a shut-in at home, trapped not by weather or work, but by the depredations of ALS. While I can travel, while I can road trip, while I can explore, I will do so, joining the hordes of road raged insanity all driving below the speed limit so the wife can get a picture of the cute bear beside the road. Parents will sing endless silly children's songs; children will learn creative new ways to express the frustration Daddy and Mommy feel; the dog will puke at least once a day from eating ice cream and potato chips.

I, of course, will be gloriously solo. I don't mind a solo road trip. Nor do I mind a companion on a road trip, a grown up companion. I will enjoy the scenery, slow down for the campers and mobile mansions in front of me, stop for coffee when I want to, and generally have a great drive. I will enjoy it all the more, wondering how many more road trips I will make before I have to stop.

Marriage

I went to another wedding last night; I was at one last Saturday as well. Last night, while I was at the wedding, another friend of mine posted a picture of her engagement ring. Yet another friend has his wedding planned for September. And yet another couple within our group is engaged and planning their wedding although it is a ways off yet. This seems to be a summer of weddings and engagements. I think this is such a good thing. It makes me so happy to see my friends find happiness.

The idea of making a public, life long commitment to someone, of sharing a life together, is something that means a lot to me. I believe in marriage, in the ideals and opportunities that marriage offers. I am committed to the ideals of commitment, to the belief that you can make a life with someone. It is what I wanted for my own marriage, to be married and to stay married for the whole of my life, until death did us part.

As I sat in the audience last night, listening to the bride and groom make their vows, it gave me great pause to think about my own marriage, about where it went wrong, about the mistakes we made. As I sat in table during dinner, listening to the families speak about the bride and groom, about one another, about the acceptance of this new person into each of their lives and how happy they were about it, I realized how much I missed that opportunity in my own life, how far off the mark I was in my own marriage.

My marriage was not a joining of two families. After 32 years of marriage, when all was said and done and I finally realized I could no longer hold the pieces together, I left. The best response I heard from my in-laws was that they felt vindicated, that they knew the marriage would never work, that I was always destined to leave her. It only took them 32 years to be right about it. I was never part of their family; they were never part of my family. It was as if two opposing sides sat it out watching their respective champions, my wife and I, battle it out in single combat to decide who was the victor, only nobody won. There are no winners in divorce, only losers.

Last summer I was visiting a friend of mine in Nova Scotia. We talked about marriage. She said "You sound more broken up about the failure of your marriage than you do about having ALS." Actually she was right. Everybody dies from something; we all have an exit date. It's just that I know roughly when mine will come. Not all marriages fail; mine did, after 32 years of trying, struggling, working so hard to keep it together. I wish I could have done more; I wish she could have done more. We couldn't.

Grandstand Show

I went to the Calgary Stampede last night, a first for me even though I have lived here in Calgary for more than four years. I've been here in visits during the Stampede as well. With all that opportunity you might have thought I would have been there sooner. There are several reasons for my lack of attendance at this spectacle of western life. First, I've spent most of the last four summers on my boat, leaving Calgary at the end of May or June, returning for work in September or October. Second, the one or two times that I have been in Calgary during the Stampede, I've not had anyone to go with. Third, I just never got around to it.

There was more to my visit yesterday than simply attending the Stampede. For the first time in my life I took in a Grandstand Show. I have never done this before, attended the major entertainment element of any fair or exposition. I've been at the Pacific National Exhibition several times over the years. I've been at the Canadian National Exhibit a couple of times. I've been at AgriFair in Abbotsford countless times. Yet in all these times I have never seen the high profile stage show that goes with these events.

The reason behind this is simple; money. When the kids were small, we couldn't afford the cost of tickets for all of them, so we didn't go. As the kids got bigger, there were other things happening and we made other choices. When we finally got to the point where all this stuff was out of the way, my ex-wife would simply argue me out of going in order to save the money, for what else I just don't know. I remember once when the Rankin Family was playing in town; I like their music, a lot. I suggested we go and she said "Let's just buy their CD and save the ticket money for other things." Needless to say, I did not get to see them.

The whole lifetime of frugality is a hard habit to break. Even yesterday I was uncertain going to the Grandstand Show, that is until I got to the admission gate. I then realized this would probably be my last chance to do this, my last chance to sit in the grandstand and be entertained. So I bought the tickets, one for my friend Mike and one for myself. It was well worth the money, every penny of it. I wish I had done this years ago.

There are those who contend that living a life of self-denial brings you closer to God. For other people the frugality is more important than the entertainment. Others simply cannot bring themselves to spend, no matter what. I am not one of these people. I want to see Grandstand Shows again and again. I had a great time; I loved it. I am even thinking of going back on Sunday, just to see the same show again! I probably won't. After all, being cheap is a hard habit to break.

I See It First

One of my home care workers is here. She has been helping me with range of motion exercises. It's hard to believe that exercises on my body primarily done by someone other than me can cause me to be so tired at the end of it all. They do make me tired, even though most of what I do is lie there and get stretched. There is some involvement on my part, holding my legs when asked and turning my body as needed. The whole process means I am tense around flopping legs and sliding about. Still, I am not working that hard yet I am tired.

That's one of the problems with ALS. You get tired. You don't look tired but you get there very quickly. My exhaustion level is high and I wear out very quickly, almost without warning. Those who are with me a lot see it easily; they know the signs and symptoms of my tiredness. They also know that I am stubborn, not willing to give into this disease, fighting every last bit of it in order to maintain what remains of my dignity and independence.

It becomes more annoying when I meet people who don't know me that well, or people who see me rarely. They see the energetic guy in the wheelchair without knowing that the energy fades quickly, that the exhaustion comes at a moments notice. They comment on how good I am looking, how well I appear to be, except for the wheelchair, of course. What they do not see are the hidden ravages of this illness, the invisible parts. They don't see the increased need for sleep, the constant sense of tiredness, the aching in my muscles. I know they don't know. I know they are trying to find something positive to say, that I actually do look pretty good on the outside, other than the wheelchair.

The reality, of course, is substantially different. The outward manifestations of ALS come on so gradually that they are almost unnoticed. By the time you can see the damage, the need for a cane or the limp, the use of the wheelchair or the loss of speech, the disease has done the vast majority of the damage it can do. We compensate for so many of these changes, unintentionally hiding them, both from ourselves and from those around us. We do things differently, inadvertently masking the damage until there is no way to do the things at all. Then others can see the difference.

By the time you can see it, I have been dealing with it for a long time. By the time you see my hands fail, I have been noticing the clumsiness for many months. By the time you see me limp, I've felt the weakness in my legs for many months. By the time you see me unable to push my wheelchair, I've been struggling with tired arms and shoulders for many months. The problem is that I am the only one who sees it. Just me, alone. That's the real terror of this disease.

I Am The One Who Knows How I Am Doing

I went to the ALS clinic yesterday, an event that has become so routine that it has become a non-event. It's a long drive to the southern edge of Calgary, to a terrific new hospital intended to serve the burgeoning communities springing up like dandelions on the suburban lawns in front of the many new houses therein. The clinic is well organized, with patient names on the doors and professionals moving about from room to room. It's all very clinical, but then again, it is, after all, a clinic.

I went to the ALS clinic yesterday, there to get measured, questioned, weighed, assessed. Of course the tools available to the neurological team are so crude and simple that they make the whole process more anecdotal than objective, an exercise in asking me what is happening to my body rather than using technology to tell them the story. Even the FRS is based on my responses to questions. It is too coarse a measure to judge the subtle changes going on in me these days. It is understandable; this disease is so poorly understood that patient experiences are the best way to learn about what is happening.

The weakness in my arms is a good example of the crudity of the measurement process. The neurologist asks me to lift my arms into various positions and then simply pulls on them. If I can resist, I am healthy. The less I can resist, the greater the weakness in my arms. There is no tool for precise measurement; it's probably not that important anyway. The outcome was that I am weaker in my left arm, with early signs of weakness in my right. My hands are showing early signs too. I knew this already.

My weight is perhaps the easiest thing to accurately measure. They wheel me onto a wheelchair scale, then subtract the weight of my wheelchair. Yesterday I weighed 244 pounds, not including the wheelchair. Yes, I am that heavy; most of that weight is firmly pegged around my mid-drift. I am about 60 pounds over my "healthy" weight; then again, I am no longer healthy. Given that my arms and legs are getting thinner, my belly is clearly getting fatter. I will need new pants soon at this rate. They tell me that being heavy is good; I must be doing really good.

Then there is the whole blood clot problem. After discussions with the pulmonary specialist, it was decided by all concerned that I should get another ultrasound, to see if the DVT in my left femoral vein was still there or if the rat poison had done its job. If it is gone, I will still have to take the rat poison to make sure it doesn't come back. There is talk of a different medicine, however that will have to wait until after the ultrasound today, plus a couple of additional weeks to adjust my INR levels; they were a bit high last time I had them tested. Perhaps that explains all the bruises in Europe.

All in all, it was a routine visit, a non-event. I have ALS. It is progressing slowly right now. My arms and hands are beginning to weaken. My FRS is unchanged; I am still functional, for now. One day that will change. I will know long before the doctors know. It's my body; they will just ask me how I am feeling and I will tell them.

In Balance

There are two sides to my life, two opposing forces held in balance by the weakest of me, two constant reminders of the push and pull of my life. There is the side that is joyful, grateful, happy, up-beat and positive. There is the side that is dark, angry, frustrated, hopeless, ready to give it all up. Sometimes the smallest of events can shift my balance. Usually the shift is manageable. Most times I can slide the weight back to centre-point, bringing balance once again to my life. What's really interesting is how small something can be to remind me of both parts of my existence.

This morning I woke up with the thoughts of clinic day. Today I will make the long trek to the hospital way down south in Calgary. There they will measure my muscle strength, weigh me, test my lung capacity, ask me how I am doing and how I am feeling, ask me what I need in my life to make this process easier. Of course there will be no discussion of treatments or cures; that simply won't happen.

There may be discussions about medications to deal with the side effects of ALS, things like changing from Warfarin to some other anti-coagulant for the DVT in my left leg, or perhaps increasing the dose on the medication for the Emotional Lability that is a part of ALS for me. There will almost certainly be discussions around home care, physio-therapy for dying muscles, the emotions that are a part of my life.

All of this is very depressing, very saddening. It takes a great deal of effort and strength to go, knowing full well that all I have become is a tick-mark on a medical chart. There is no treatment, no cure. I wonder why we are doing all this work so that nothing can be done. Thousands have gone through this before me; I offer no new data. Yet I go, refusing to give up the myth that all this makes a difference.

Then, after getting dressed, I was in my wheelchair in the dining room and wondered where I had put my cell phone. I quickly rolled over to the bedroom, rolling halfway through the door to look on the dresser. It wasn't there; I realized I had already put my phone in my pocket. It was one of those minor memory lapses we all have from time to time; no big deal. As I rolled backwards out of the door, I bumped into the bathroom door frame across the hallway.

It took me but a moment to make a full turn in the hallway, a hallway that was wide enough for my wheelchair to turn around. In that instant I was so grateful for my renovations, for the work done by my brother Jim and my friend Mike to widen that hallway, to make it possible for me to move about in my apartment. I was grateful for the work of so many others who helped me make my home workable. I was grateful for my laminate floor and the wide doorways, for the ease in dealing with this physical aspect of my life, for all that I have in this place where I live.

It is a measure of my daily life that these kinds of things happen often, where I am reminded of the frustration and anger within me, of the sadness of ALS. Yet at the same time, often at the very same time, I am reminded of my good fortune, made grateful once again for the life I get to live.

Bad Arm Day

Back when I could still walk, back in the early days after my ALS diagnosis, I would have those days where my legs felt weaker than normal, where simple tasks like walking or picking up my feet or standing seemed not just incrementally more difficult, but substantially more difficult. The muscles in my legs ached, feeling weak from toe to top, each movement causing a new complaint, not of pain but of exhaustion. I called them "bad leg days".

Today I am having my first official "bad arm day". My arms today feel like my legs did then, filled with an ache that begins in my fingertips and moves all the way up into my shoulders. There is a sense of weakness in my arms that is bigger, more invasive, than yesterday. There is a feeling that every motion is slower, more difficult to complete. It is not that I cannot do the things I need to do; I can. I am up and dressed. I showered this morning, brushed my teeth. I am at my keyboard typing. It's just that all of these things seem to take more effort, more work to complete, than they did yesterday.

If I have anything to learn from my bad leg days in the past, it is that they will happen and I will move beyond them, doing what life asks of me in the best way I can. My arms, hands, and fingers will move more slowly today, perhaps just for today, perhaps for tomorrow too. I will feel the work and effort of each finger stroke and touch. I will see the shake in my hands and arms as I pick up a cup of coffee or hold a pen in my hand. As I brush my teeth, I will rest my arms on the sink, seeking ease from the effort of holding them up.

What I have also learned from bad leg days is that they are a precursor of what is to come, a premonition of future weakness. It will take time; my body will fight hard to find new ways to connect nerves to muscles. Eventually, regardless of the fight, the weakness will continue to the point of victory for ALS. Eventually I will lose all strength in my arms. A "bad arm day" is simply a warning of what is to come.

No Wonder

I am, once again, writing while sitting up in my bed, although this time I am awake at something closely resembling a more normal hour. I've been awake for a while, reading the news online, checking emails and Facebook. I should probably get used to this; there will come a day soon enough when I will spend most of my days, if not all of them, trapped in my bed.

You would think that a future like that would be enough to motivate me to get up; it's not. I am enjoying sitting here, contemplating, reading and thinking about my world and my life. It's given me a few minutes to think about the oddness of ALS, the strange way in which it attacks and paralyzes. It's just so strange. It is not the paralysis of a spinal cord injury, not a complete paralysis. It's a slow, creeping kind of paralysis, where you can still move some muscles while others are completely incapable.

My leg muscles are a good example of this oddity. As I sit here, my legs are straight out in front of me, having been positioned so through the use of my arms and hands. The major muscles in my upper and lower legs are completely non-functioning. Yet there is enough in some of the muscles around my knees to twitch my knee joint and the back of my upper legs. This, of course, by no means implies usability. Perhaps the only thing it does is allow for the cramping that is a part of this nasty disease.

My feet are another good example of the weirdness of ALS. My toes are forever curled forwards, like the claws of a bird, immobile and curved in death. Yet while my left foot is frozen in its downward curl, the toes on my right foot can still lift up, somewhat. The big toe on my right foot responds to no requests for movement upwards nor does my baby toe, just the three middle ones.

Even in their inability to move upwards, the toes on both feet can tap downwards on request. I can even get a tight enough downward push to give myself a cramp in the ball of my foot, whether left or right. In other words, there is enough muscle movement to cause me discomfort, or to allow me to tap along with the music the tiniest bit, but not enough to straighten out my feet when I put shoes on.

All in all, it's just difficult. I am a paraplegic who can wiggle some of my toes; a paraplegic who can twitch his knees; a paraplegic who is slowly turning into a quadriplegic. It's such a strange disease. No wonder they can't figure it out.

Day Of Rest

Today is my day of rest. It's 1:30 PM and I am still in bed, having just awoken not more than a few minutes ago. I have no appointments today, no meetings or engagements. There are no home care workers coming today, no Rosa. I have no company visiting, no plans to go anywhere or see anyone. There are no greetings planned, no good byes to be said. The elevator is broken in my building, so even if I wanted to go out, I cannot leave, at least not easily.

Last night I went to bed at 11:30 PM. This means I have slept some 14 hours straight, with the normal bladder driven interruptions. Even as I write this, slumped up against the pillows behind my back, my eyes creep towards closing, lids heaving, wanting to take me away to slumber once again. This tired state is a fact of life for me; no amount sleep or rest sees me awaken refreshed and energized. I am dogged constantly by exhaustion; not the exhaustion of a body well exercised or a mind will worked,  it is the exhaustion of ALS.

I will get up today. My expectation is that someone will come to visit, or at least to check in on me. It happens often, that my friends show up or call to see how I am. I am never really alone, at least not for long. It is one of the things that drives me to get up, even when my body says stay in bed. Having a life means I am compelled to live it; having things to do and people to see means I must eventually get up and get going.

This day, this long morning into afternoon spent sleeping, is something I don't often get to do. It will be gone tomorrow as a care worker come to stretch my dead legs. It will come on Tuesday, Wednesday and onwards as my activities of daily living fill my schedule. It will come again, I know this to be true. Soon I will have another day of rest. One day I will have more of them than I want. I do not wish for them; I know they will come.

No More Lifting

I have a form of ALS called Progressive Muscular Atrophy, or PMA. This variant of ALS is extremely rare although the outcome is exactly the same as it is for all other ALS patients, complete lost of voluntary muscle control and ultimately death. PMA just works a bit differently. Essentially it starts in one extremity, most often the legs, and slowly works its way to the other extremities.

In my case, PMA is working its way "up" my body, slowly and steadily, rather like the reverse of stepping into quicksand; instead of me going down, the disease is working its way up. It started in my legs, most probably in my feet but I didn't notice. The earliest signs with the tripping and falling, most likely from toe drop. These falls were intermittent enough that I ascribed them to a bad knee. Then came the fall with the outboard motor and I ascribed the weakening of my legs to a back injury. Ultimately I found out what was really going on.

ALS has taken my legs. It is now working on my mid-section, stealing muscle capability from my diaphragm and arms. This is becoming ever more obvious to me, although not necessarily to others, in the small things I can no longer do, and in the increasing clumsiness in my hands, the constant dropping of things finding the finger equivalent of toe drop. Of late there have been a couple of very noticeable changes, personal enough that I am really the only person to notice them.

Of course there is the fact that I can no longer get vertical; my legs have given up completely. I can no longer lock my knees to bear the weight of my body. They just collapse. There is the not-so-obvious loss of strength in my arms. I can no longer do a "straight lift" up in my chair as high as I could in the past. That inability to lift myself came clearly when I wanted to lift myself up the stairs, one stair at a time, when the elevator went out the other day. I could not get the elevation needed with my arms alone. I couldn't do it.

I also notice that the transfer from my chair to my bed is becoming increasingly difficult. It's to the point where the whole operation is rather hit and miss. Sometimes I make it; sometimes I rest half-way on the wheel of my wheelchair. I am getting a lift put in soon, something that will make it easier to get from my wheelchair into bed along with the reverse process. I will need it. My arms are getting tired.

ALS with PMA, that is what I have. And it is Progressing.

Elevator Woes

The elevator in my building is acting up, again. This infernal old machine and I share a common fate; we are both dying slowly, taking a couple of years to go from fully functional to being on our last legs. It is dying one piece at a time. The significant difference is that the elevator can be repaired; it is a machine.

It's latest performance has been a repeat of past performances, where it stops about a foot higher than the floor for which it is intended, making a rather large step to get into and out of the elevator. The elevator, in short, transmogrifies itself into one big stair. For most people this is but a mere inconvenience; for me it is a matter of life and living. I am trapped in my home in this situation, not for the first time.

At least I was able to get into my apartment yesterday, thanks to help from the fire department and some quick workarounds by the elevator company. At least I was not trapped in the elevator, or worse yet, did not fall from the step as did an elderly man across the hall. His incident ended up with him getting seven stitches to repair the cut in his arm from where it hit the edge of the elevator carriage. At least I am home and safe.

The real issue is the age of the elevator. It is about 40 years old and, while well maintained, it is time for a replacement. Our condo board has been working on this for about year now. The first step was to get a new elevator service contract in place, the old on having expired and the previously service provided having provided large bills with small service. This took several months to get in place.

The next step was to get an assessment of the elevators in our complex. There are three buildings, each with its own elevator, each elevator being in varying degrees of distress and age. This process took a couple of months and produced a report with which we were able to negotiate a replacement contract with our service provider. These negotiations took a few months as well.

The final step is now scheduled; replacements of all the elevator parts except the carriage itself will start in "A Building" in October, then "C Building" in November, and finally "B Building" in January. I live in "B Building". This means the elevator will be forced to limp along with constant attention for a while yet. It sounds familiar to me. It is another thing we have in common.

Summer Heat

At 5:00 AM this morning the brilliant Canadian summer sun split the horizon, bursting the soft, glowing orange that rims the edge of this rolling prairie into a blaze of blinding white, announcing its arrival by blasting into my window, starting the heating process of the sultry summer day that is sure to follow. I awoke to see the sun turning the soft, gentle light of my room into a heated incubation. I got up to do what I needed to do, then went back to sleep. I was tired, able to ignore the rising temperature and rising sun.

At 9:45 AM this morning, Rosa called to tell me she had a family problem today and would not be able to make it. Could she come tomorrow at noon instead? I said yes, ended the call and rolled over to try going back to sleep. The warmth of my room began to draw beads of sweat from my forehead. The air conditioner was running in the living room; I could hear it. Ray must have started it when he woke up, hours earlier. My bedroom door is closed for privacy, so that cool air was not reaching me.

I tried to go back to sleep. Unfortunately 9:45 is close enough to 10:00 AM to make that a difficult thing. On top of the morning demand for my awakening, Mom and Ray are visiting and I felt guilty about sleeping when they are awake and wondering about their day. I was tired; once again I tried to ignore the rising temperature and the insistence of my good host nature, this time to limited success. I finally began the long, slow process of getting from sleep to wakefulness, from naked to dressed, from listlessness to life.

I've been depressed the last couple of days, today still. Mom, Ray and Jim all tell me it is to be expected that I should have a bit of a slump after being on such an exciting trip for three weeks and then such a fun weekend after that. They tell me it makes sense that I would feel a bit let down after all that "up" time. I agree that most of us would feel these things, that I am not all that different... except for one thing.

I have a reason to be depressed. When I get into a "slump", I begin to think about what is happening to me, what will happen to me. I begin to wonder about what I have lost, what I will lose next. I think about losing my ability to drive, my ability to cook, my ability to feed myself. I think about the day when I can no longer breath unaided; that will most likely be my last day. I get sad, the sadness that infiltrates.

Having a slump after having so much fun is normal. What I have is more than just a slump; it's slump "2.0", slump accentuated, driven by ALS. Even a beautiful summer day will not ease it. I just have to wait it out.

A Mess

I had a nose bleed last night. It was not a big one; it was so small that it might have been an infected hair follicle that broke. Nonetheless, there was blood seeping backwards into my sinuses during the night. I found this out when I awoke and felt the stiff, scratchy feeling inside my left nostril. It was confirmed when I cleaned my nose and found a large lump of congealed blood in my nostril.

There was more blood further back, eventually leaking into my throat. I could taste it in the morning. It's an awful taste, knowing that it is my own blood making its way back into my stomach and ultimately becoming a part of my own food system. The chunks of semi-dry and dried blood clogged the tissue in my hand, getting onto my fingers in the process. It wasn't much but it was messy.

This is the second time in a week that I've had a nosebleed like this. I had one on my first night home. They are a result of moving from the moist air of Italy and Greece to the dry air of Calgary. For most people, these kinds of things are a simple inconvenience. For me, thanks to Warfarin, they can be a real mess. The one on Friday morning was a mess, leading to stains on my sheets on my first night home.

This time I was more careful, ensuring that any mess was contained to a tissue. I was careful with my hands, lest any mess make its way from hand to sheet, as it did on Friday. Mess like this, stains on sheets and blood on tissues and fingers, is now a common part of my life. It's just another day with ALS.

The lack of clotting is not a direct result of ALS. It is a side benefit from being in a wheelchair all the time, thanks to the loss of my legs to this disease. Life in a wheelchair brought on a Deep Vein Thrombosis. In order to combat the DVT, I have been put on Warfarin to reduce the clotting capabilities of my blood. The smallest of cuts or pinpricks produces bleeding for an extended period. That means a mess.

Those Who Stay On Land

Canada Day, the unofficial start to summer in Canada. It is a warm day here in Calgary, the horizon a gauze of white shading off to the blue sky that rises so high above me. There is no breeze today, no wind to move the heat about. It will be warm today, pleasantly warm, the dog days of summer yet a month or so away. Over the next few weeks the days will get hotter, sunny skies interrupted only by the occasional passing shower. It will be outdoor weather, camping weather, picnic weather.

I am not sure how I really know this. After all, each Calgary summer in the past I have escaped to my boat, to spend weeks on the water, drifting up and down the coast of BC. This is my first summer without that dream, without that vision of me on board, living the vagabond life, moving from port to port, from island to island, from bay to bay. This is my first summer on dry land, without a deck moving beneath my feet and wind filling my sails.

It will be a busy summer for me, regardless. Mom and Ray are here for this week, I have weddings to attend this coming weekend and the weekend following. The Calgary Stampede starts in a few days, a 10 day riot of western culture, a paean to overindulgence. It will be a 10 day party, a bacchanal for many, hangovers being emblematic of workdays. I might take in a party or two, the odd Stampede breakfast.

Two weeks from today I am going down to the coast. While I cannot sail it, I certainly can visit it. More importantly I can visit my children and grandchildren, watching Rose play in the pool, holding newborn Quinn, taking Charlotte fishing. Shortly after that there will be another road trip, probably to the States with a friend, most likely for a week or so. At the end of August, Meaghan and family will come visit for a couple of days.

Then summer will be suddenly over, a summer on land, a summer without a boat; my first in a long time. It will be different. I will be one of the normal people, those who stay on land.