Friday, 31 October 2014

Numbers Don't Lie, People Do

I've said it before and I will say it again; I am a science and numbers kind of guy. I love the way that mathematics and the scientific method have helped explain so much of our world and life around it. Of course there are questions that may never be answered mathematically; that's why we still have plenty of philosophers and religions.

It is the power of numbers that helps us understand things about ourselves. We, as human beings, are a part of a large number set, a pool of data that can help us understand our lives, taking the apparent randomness of so many things and giving them an explanation. Unfortunately that also means that we are a statistic for others; our humanity is not defined by the numbers, just explained.

On the other hand, I hate numbers. It is this statistical analysis of life which tells me that a normal life expectancy for a Canadian male at age 60 is 85 years. That means I should have expected another 25 years after my birthday next summer. Statistically, 90% ALS patients die within the first five years of this awful illness. On my next birthday, I will be at year four and a half with ALS, 85% of the way through the path to a 90% probability of death. The odds are pretty good that I will not see age 61.

Last night I was explaining ALS to a fellow in our group. He shows up at an event every few weeks. His home is in Edmonton but he works in Calgary on a regular basis. When he is in town, he comes out to Trivia and Name That Tune. Surprising enough, he had no idea I have ALS. So I told him about ALS, shared my story and pathway through the disease, and finished up by saying I probably had a year or so left, then I would die.

His immediate response, as is the response of so many, was "We're all going to die." My answer was "Sure, I'm just going to die about 25 years to soon." Then I did the math on that. I am going to miss about 30% of my expected life. That is a bit of a shocker, to realize that I am essentially going to miss on the last third of my lifespan. It's the kind of math I don't like; cruel, heartless, and completely accurate.

This is no theoretical estimate. These are the numerical facts. What about that last 10% you ask? After all, things seem to be going slowly for me. I get a lot of "you look great for someone who is terminally ill." That's the whole deal with ALS. You look great but you are dying. My disease is following a fairly normal progression, just not a quick one. The odds are pretty unlikely that I will be part of that 10%, and even if I am, I won't be part of it for long. ALS will kill me, about 25 years short of my allotted span. That's what the numbers say.

Thursday, 30 October 2014

Recognizing Change

ALS is an incremental disease, a silently creeping monster that makes such small changes that you don't notice them, until you do. There are two ways that the changes are brought home to you. One is the "Aha" event, where you haven't done something in a while and you go to do it only to find you cannot. The other is the "ooohh" event, where you know things are changing but you think you can keep going, until one day something happens which makes it clear that the end of this is coming.

Today has a great example of each of these things.

The first is my shower. I had my bathroom modified to allow wheelchair access, including a roll-in shower with a built in shower bench. Since it's installation I have noticed that it has been getting more and more difficult to make the transfer to the shower seat. It's not that the seat is badly positioned or improperly installed. It's a simple function of weakening arms.

I've noticed the increasing difficulty but not really paid a lot of attention to it; the progression has been slow and I have been able to make it work so far. This morning, after getting in and having my shower, I tried to get out. The fact that the floor is wet and sloped to the drain means my wheelchair does not stand completely steady even when locked; it slides. Up until today I have simply pushed myself across and steadied the chair on my own.

Today was different. The slide seemed farther; the effort to stabilize the chair seemed more difficult. I tried once, twice, three and even four times. Finally, after much adjusting and effort, I made the transfer. The effort was so great that my arms were to tired to lift me onto my bed; I had to use the sling lift, something that has its own set of problems. I said "ooohh" in my mind, realizing that the change was becoming significant.

After getting dressed I went into the kitchen. There I noticed the handle of my grill pan. It's a small, rectangular frying pan with grill ridges in it; it's great for doing steaks and chops. The pan itself was in the dishwasher, having been used to make Seared Ahi Tuna for dinner last night. I tried to put the handle on the pan, only to discover that I can no longer do this with one hand.

Of course, most people can't do this with one hand. Up until now I could, even when guests or caregivers could not. I had strong hands. Now, after a couple of weeks of not using the pan, I found I could not simply use one hand to squeeze the handle enough to reattach it to the pan. It was an "aha" moment; the gap of time between the last time I did this and now has been just enough to take me over that ability edge.

That's the way ALS works. There are always changes. Sometimes you realize it only about half way through the change. You don't see the start; the increments are too small. Once you get far enough that you go "ooohh", you see it a lot more often. You know change is happening. Other times the gap between doing something is far enough apart that you find, suddenly, you can't do it anymore. Your mind goes "aha", along with several other expletives. You know change has happened.

Wednesday, 29 October 2014

Exercise Me!

I have been stretched, not necessarily to my limit, but enough that it has worn me out. This is not some psychological stretching; this is a physical stretching that happens to me every Monday, Wednesday, and Friday when I am at home. On those days a Home Care worker comes to my apartment and goes through Range of Motion exercises on my legs.

The purpose of these range of motion exercises is to keep my legs as limber and loose for as long as possible. The flexibility in my legs allows me to transfer more easily, adjust in bed more easily, and move my own legs more easily whenever I have to do so. The exercises lubricate the joints in my legs and hips, and stretch the dead and dying muscles. Simply going through these exercises also works out my arms and shoulders, something that helps me keep what I have for as long as I can.

First comes a simple knee bend. I rest on my back and the care worker bends my leg up so I can grab my knee. I hold on to it for about 30 seconds then down it goes. This simple cycle is repeated five times on each leg, as are all the rest of the stretches. After that comes a vertical leg lift, where the care worker lifts my straightened leg up towards the ceiling; that's when I tell them they are making me into a ballet dancer. This particular exercise can really hurt as the muscles in the back of my legs have already started to contract; doing this exercise forces them to extend and they complain.

After leg lifts, it's a double knee bend, where the care worker hands me both my legs and I hold them in the bent knee position. With weakening arms, this is real exercise for my upper body as well as stretching for my lower body. This particular stretch reaches all the way into my lower back, an area of some pain now and again from sleeping in odd positions forced upon me by me inability to move my legs while sleeping.

Then comes my favourite; the calf stretch. In the oddity that is ALS, my calf muscles are still strong when pushing my toes downwards; not as strong as they once were, but strong enough to push back. The Home Care worker grabs the heel of my foot and forces my toes backwards, a foot position similar to that taken when you are running or jumping. Given that I can push back, I do, making this as much as exercise for the Home Care worker as it is for me. It's nice to feel at least one muscle still working in my lower legs.

The final two exercises are rotational knee bends, the kind that move my hips as well as my legs, ensuring the joint between the hips and legs stays lubricated and loose. The first is where they bend my legs halfway, put my feet down, and rotate my bent knees from side to side, first one way, then the other, while I hold my trunk even. This forces a rotation into my hips. The last is what I call the "butterfly", where still bent knees are spread apart from side to side, making my legs move like butterfly wings. Once again the Home Care worker does the work, spreading my legs and holding them in place.

These exercises do what all exercises do; they tire me out. Inevitably after a session I need to rest for a bit, recovering from the stress and strain of the physical activity. These exercises also give me a good idea of how the rest of me is doing, since I have to hold my legs and move my body during the stretches. That's why my arms hurt so much afterwards; they are getting weaker and my legs are getting harder to hold.

Soon the Home Care workers will begin working on my arms as well; they are weakening to the point where my own activity is no longer sufficient. It's no fun; it's reality.

Tuesday, 28 October 2014

Jabberwocky, Sort Of

"The time has come," the Walrus said, To talk of many things:"
"Of shoes--and ships--and sealing-wax-- Of cabbages--and kings..." Lewis Carroll

I think of these lines from Lewis Carroll's "The Walrus and the Carpenter" often, whenever I think about my present and my future with ALS. Charles Lutwidge Dodgson, the man behind the name "Lewis Carroll" was a brilliant man with many talents. Among other things he was a  mathematician, logician, Anglican deacon and, in the early days of a now ubiquitous art form, a photographer. In other words, he was a creative man who loved words. Me too.

The reason I think of these lines, however, has nothing to do with Jabberwocky. It is my own life that has this "through the looking glass" feel to it. When I contemplate my future, that contemplation goes only as far as the next few months. When I think of the many things in my life, I am continually struck by the inanity of it, where the upside is down and the downside is up. I don't think much about ALS killing me; I think a lot about how I live with ALS. I am broke, yet I am wealthy. I am alone, yet I am surrounded by friends and family. I am sad, yet I am happy. I have so many things to consider, yet I don't.

I just made breakfast, only it was noon. I look at the food I eat, considering the calorie count, not to keep it low but to keep it high. If I make something unhealthy, I should probably make more of it. My doctor tells me there is no such thing as a bad calorie with ALS. So when I make something as unhealthy as Kraft Dinner, I add extra butter and even a bit of mayonnaise to make it higher in calories. I also add an egg, some wieners and perhaps a bit of onion to make it even better, or worse. Yet the mere effort of making something good for me to eat leaves me tired enough that I don't want to eat it.

Just a few days ago I was on the open Pacific fishing for marlin. Today I am wondering if making a meal is worth the effort, if there is something else I can eat instead of what I am cooking. This morning I woke up shaking, almost unable to hold a glass of water. After the weekend I am planning on driving down to Kelowna and then over to the coast. These are the oddities of my life, that I can be completely weakened in one area and yet completely functional and active in another.

It is both sides of the looking glass, this space I am in. My arms are fasiculating right now, muscles wobbling like mad. Yet I just finished chopping onions and eggs. My belly fat keeps me alive, my belly fat drives the atherosclerosis that wants to kill me. I am perpetually exhausted yet rarely am I really tired. I am broke but I just went to Hawaii. There are so many things in my life that just seem backwards, odd, a misshapen reflection. And there are many things to talk about.

Monday, 27 October 2014

From Kona to Calgary

I had planned on writing this blog about five hours ago. My plans were interrupted by a "short nap". My definition of a "short nap" seems to be changing these days, although in defense of myself, it was after a red eye flight from Maui to Calgary; I finally got to my apartment at about 8:30 AM and thought I would rest for a couple of hours, perhaps until about noon at best. Noon rolled by while I was fast asleep, then 1:00 PM, and 2:00 PM. By 3:00 PM I was moving about. At 4:00 PM I thought about getting up, and by 4:45 PM I finally made it.

Yesterday was a bit of a slog, in traveling terms. Our flight from Kona to Kahului, on Maui, was at 4:55 PM Hawaii time. We spent our morning packing and then went for lunch at the local restaurant in the small boat harbour just down the hill from the hotel. The security folks from the hotel took Emma in a golf cart so she wouldn't have to walk down the hill; I just let it roll. On the way back, the security folks once again came for Emma and they sent someone along to push me up the hill; I just let it roll.

Ukule, the Hawaiian word for "fish", is the kind of place I like, with ordinary people eating simple food, usually with an outdoor patio; here in Keauhou Bay the whole restaurant is outdoors, except for the food preparation areas. Birds flit in and out, skipping along below the tables looking for scraps, stealing bits from the tables. Insects also buzz about, seeking the sugar in the many rum variety drinks served with local fish. A mongoose dashes across the street, chasing nothing or being chased by something, I am not sure which.

After a lazy and long lunch, we headed for the airport, checking in with Ohaha Airlines, a regional affiliate for Hawaiian Air. Once again I was asked about a dozen times if I could walk. Once again I answered "no" each time. Once again my comments about "cannot stand" were forgotten or not read or simply ignored by the airport staff. Once again the handrail of the seat would not go up. Once again I was lifted over it, like a sack of potatoes. It's getting to be routine.

The flight to Maui was uneventful, and short. About 10 minute after take-off we started our landing approach, ending it with a successful arrival at Kahului Airport. Once again the staff were unaware that I needed to be taken off with assistance in the "aisle chair". Once again I was asked if I could stand. Once again I was lifted over the unmoving seat rail.

When we were inside the airport, the young man assisting us gave us a bit of a fright, telling us that he didn't think Air Canada had a flight to Vancouver on Sundays, only Saturdays. Since we had a ticket, I suspected he was incorrect. Sure enough one of his co-workers corrected him, saying it was the start of the Air Canada winter schedule.

Boarding of the flight home actually went much better, although once again I was asked repeatedly if I could stand. Emma took charge on this one and simply told the flight crew not to ask me that question. On the plane, the handrail lifted. The ground crew had checked it beforehand after I related my prior experiences. The flight itself, all in darkness, was completely uneventful. On deplaning, only one person asked if I could stand; I got a little short with her and she got defensive, so I eased up and explained my frustration. She continued with defensiveness so I just let it go. I had no fight left in me.

What with arriving at 7:00 AM, the wait to get off the plane, customs, and finally Calgary traffic in the morning, I got home at about 8:15. I debated writing and thought to myself "Perhaps I should just sleep first, just until noon." And that's how I got here.

Sunday, 26 October 2014

My Kind Of Normal

It's going home day today. We have a flight at 5:00 PM over to Kahului on Maui. After a 3 hour layover we board an Air Canada flight from the tropical treat of Maui to the icy reality of a Calgary winter. Even though it is only early fall, just a month past the autumnal equinox, the frost and cold of an Alberta winter is settling in upon us until next April, our only relief the occasional Chinook.

I don't mind heading home. I am kind of looking forward to it, to getting back into my own home, my apartment where everything I need is near at hand, where friends will come to call, where I will make dinner and wine, where my routine will once again settle on me, a mantle of the familiar. Travel is certainly wonderful; I will do this again and again until I can do it no more. Home is wonderful; whenever I travel I will look forward to my return to what I laughingly call "normal life".

Of course nothing is normal about my life. I don't work, I sleep more than half the day, I go out late at night whenever I can. I was thinking about this yesterday, how there really is little in my life that resembles what it used to be. Perhaps the only holdover from healthy days is my social activity; I had that before ALS, I have it still. I am thankful for this.

Normal for me is looking at my feet, curled over at the top, claw like, the toes a deep purple, lifeless, motionless. Normal for me is seeing the dead muscles in my legs, bags of useless meat surrounded, kept in place, by the skin container that holds them. Normal life for me is wheelchair struggles and tired arms, slings and lifts, handicapped toilets. Normal is not normal.

Yet even with this abnormal normal, I have a pretty good life. Here I am in Hawaii, packing to go home after a wonderful week of adventure and fun. Here I am with a friend, making me laugh as she moans about her lack of packing ability. Here I am getting ready to cross an ocean by jet plane, sleeping at 35,000 feet. Here I am planning another expedition already, one for January. Here I am planning dinner with my daughter on Wednesday, hunting next week, a visit to the coast to see my Mom, my children, my grandchildren.

That's normal for me. Busy, active, living. This week Hawaii. Next week Calgary. The following week the forests and mountains of BC and then the coast. After that? Who knows!

Saturday, 25 October 2014

Skunked Again

I am still in bed, resting after a long day on the water yesterday. We got back from our fishing and snorkeling tour at about 6:00 PM. We went to our room to rest up a bit before dinner. I fell asleep. When Emma woke me  at 7:30 PM to go to dinner, I said she should go without me. I needed to rest. I stayed asleep pretty much until around 10:00 AM this morning. I think I was pretty tired.

The fishing tour yesterday was a success for Emma; she had a great time snorkeling in the waters of the Pacific, drifting in and about the coral reef in the small cove hosting the memorial to Captain Cook. The obelisk commemorating his death is right on the spot where he fell. It is a beautiful little cove, now a marine park, with abundant small fish and a host of coral types. Emma loved it all.

I, on the other hand, did not do so well with the fishing; I got skunked. Marlin fishing is a low probability exercise. Only about half the charters actually get a bite. Of that, about half the fish get off the bite. So only about 25% of charters actually bring home a big one. Yesterday, of the dozen or so charter boats leaving the harbour, only one returned with marlin as far as I could tell.

Still, I was disappointed in the outcome. Actually big boat charters like the one yesterday have never worked out well for me. I've been on board these expensive trips in Florida, a couple of times here in Hawaii, and even in BC. On each of those trips, I was skunked; I've never caught "the big one" while on a commercial charter.

On the other hand, I have caught an awful lot of fish in my life, both large and small, from the lakes and rivers of BC. I've caught numerous trout and salmon, so much so that my kids thought candied salmon was a normal part of everyone's diet, and catching smaller trout was fun but not serious fishing.

Still, it would have been nice. This will likely be the last major fishing trip of my life. I would have liked to catch something, even if it wasn't a marlin. Nobody likes to get skunked.

Friday, 24 October 2014

Time And Energy

It doesn't matter if I am in the most beautiful place you can imagine, sitting in an air conditioned room watching the sea roll on endlessly, thinking about an exciting day on a charter boat where I will fish and Emma will snorkel. It doesn't matter how interesting yesterday was, or how much fun it was to go to the McBride wedding last night. No matter how hard I try, getting up in the morning, even in this place of wonder and leisure, is still a difficult thing for me, perhaps the most difficult for me.

Emma is struggling to understand it. Even with her brain injury, she is still able to get up and go. It takes me a full half hour to get up the energy even to get dressed. Then I need to rest again so I can get into my wheelchair. This time where I sit, or lay, in bed is a time to build up the strength it takes to sit up and put on clothes. Even here in paradise.

We took a helicopter ride around the island yesterday. It wasn't a full loop, not did we get to the craters at the tops of the volcanoes that form the ridged backbone of this island of Hawaii. Instead we flew between them, the steep slopes rising on either side of us. The pilot neatly dodged the volcano fog that inevitably shrouds the peaks for much of the day, alt the while working hard to keep us out of the rain clouds that perpetually hang around the east side of Hawaii, the wet side of the island.

Hawaii, the big island, is both the largest and the youngest of the Hawaiian chain, as long as you don't include the new volcano forming below the sea just south-east of here. It is an island completely made up of volcano flows, many of them recent, some of the currently moving new lava from the bowels of the mountains out through vents and down to the sea. On the east side of the island, the trade winds blow, moist and steady. On the west side, the mountains block the wind and rain, making the Kona side drier and less windy. In fact this side of the island is nearly a desert in some places while the other side is a dense, lush, green rainforest. Of course there is plenty of green where we are, both on land and at sea.

Our flight took us over an open volcano vent, sulfur dioxide and steam pushing their way through the cracks in the new lava, the surface the hard black classic lava flow while underneath through those same cracks and holes, you could see hot magma making its way seaward by way of lava tubes. From there we went northeast, flying deep into the deep canyons with high waterfalls, the helicopter so close you could make out details of the leafy green treetops and low bushes on the steep cliff sides. It's easy to understand why they filmed parts of Jurassic Park in this location; it it the classic tropical rain forest.

After our helicopter tour we were chauffeured back to our hotel, into the waiting arms of the McBride clan gathered here for the wedding of one of their daughters. We were treated as honoured guests, given seats at the family table, fed an amazing dinner, served plenty of wonderful wine. The chatter at the table made me feel right at home; these McBride's were family for me too.

Now I have to get up. Our taxi will be here soon to take us to our fishing charter. Emma has already reminded me not to be late. I should be okay with that. It just takes time, and energy.

Thursday, 23 October 2014

Modern Warfare

It was hard, yesterday, listening to the new about the shooting at the Parliament buildings in Ottawa. This is the way war is fought these days, particularly this kind of ideological war, where the objectives are not simply territory, but a way of life and a way of thinking. These are the most dangerous kinds of wars, the kind that become intractable, almost permanent. Think of the many, many years of trouble in Northern Ireland, and how that conflict reached beyond the borders of two constituents and involved so much of the English speaking world.

There are those who will say that terrorism is not warfare. They would be wrong. Anytime someone acts in concert with a national or state power in the effort to build that nation's objectives, using weapons of any sort, it becomes a war. The problem is that we, as a society, are ill equipped to fight this kind of warfare, where the participants are amongst us, unseen until the moment of attack.

There are those who would say that this kind of attack should be expected. After all, we, as a nation, are sending military participants to engage those whom these attackers would believe to be their nation, their primary allegiance, their fellows in arms and belief. They are correct; we should be prepared for those with whom we engage in war to fight back. This is how warfare works; strike and be stricken.

Ultimately the question will arise. Should we be there? This is not a simple question. There is no doubt that ISIS and those who would stamp the Middle East with fundamentalist Islam are dangerous, both within that historically troubled region and around the world. Religious fundamentalism, be it Islam, Christianity, Judaism or any other belief set, inevitably leads to conflict. ISIS is not the first movement to engage in "conversion by the sword". As with all difficult questions, there is no easy answer. Perhaps a better question is "Now that we are involved, what should our involvement look like?"

The single greatest issue that I see, as a Canadian, is our slow, incremental move from being a peace keeping country to a peace making country, and thus to a war making country. In a land of tolerance and compassion, this move from standing between combatants to choosing a side will inevitably put us in harms way. I wonder how well we will serve the greater good of humanity? Of course you cannot be a peacekeeper if only one side wants the peace to be kept. So then what is our role?

This conflict, this long, slow, slog against ideology will change us. It will change our way of life and the tone of our national dialog. What it will become I do not know; all I know for sure is that it will happen, and the journey will be perilous. I will not be here to see it end. Perhaps my children or grandchildren will see it. I hope so..

Wednesday, 22 October 2014

The Story Of My Life

In each day there are the unexplained, random things that happen to us. We call these coincidence; some days I am not so sure. A collection of coincidences becomes a story. A collection of stories becomes an event. We call the long string of events another kind of story, a life's story.

On Monday, while wandering about the resort, getting our bearings and figuring out what we might do with our day, we found there was a lu'au at the hotel that night. A lu'au is the Hawaiian version of that most common of cultural events, the community or family party. Regardless of language, location or circumstance, each and every culture has this kind of event, usually to celebrate significant moments in community or family life, a wedding, a victory in war, a peace treaty, whatever. It's something that we as a human species need to do; socialize, drink, dance, play music, commune.

On attempting to register for the lu'au, they asked my name; I said "McBride" whereupon I was told that wasn't sufficient. Apparently there were at least seven McBride's registered at the hotel at this time. So I said "Richard McBride"; "Sorry, Mr. McBride, we need a bit more than that." Apparently there was another Richard McBride staying at the hotel; it was a whole family of them here for a wedding. So I gave the hostess my name and room number, and was finally graced with individual identification; we were going to the lu'au.

The next day, yesterday, we were going to try to get me into the pool. This hotel, the Sheraton Kona, has excellent handicapped facilities. The room, although smaller than suggested online, has an excellent layout, access to all parts of the room, and a well designed handicapped washroom with wheel-in shower. All facilities have "ramp" access; I can go anywhere I want in this hotel, anywhere that anyone else can go, even the pool. The one exception is the waterslide, an understandable exception at that. After all, I cannot imagine most people in wheelchairs are into the whole waterslide thing. If they are, I am sure the hotel would provide help to get them to the top of the slide.

We went to the pool, with its handicapped lifts in both pool areas, the inner and outer pools. The staff readied the lift and showed me how to operate it. I transferred to the lift seat, at which point I needed to stop for a rest. As I was resting, a couple of ladies in lounge chairs beside the lift commented on the whole process. We started to chat and they mentioned they were here for a wedding. I said "McBride?" Their hands shot up in reply, as did mine in the next moment.

Then came the long chat, the one about family history and where they were from, both now and three generations back. It's close enough that we might be distant cousins, with their family originating in Ireland and relocating to Glasgow, in Scotland, during the infamous Irish Potato Famine. As it happens, the family patriarch is Richard McBride; he goes by Dick. He happened to wander by and more introductions were made all round. We talked about family sizes, sons, daughters, grandchildren, and for Dick, great-grandchildren.

As inevitably happens, they asked how I came to be in the wheelchair. I told them, and this led to further chat about how life takes you to places you never expect. This led to even more talk; it took me a while to get into the pool.

The pool itself was not what I would call a success. I got in the water only to find that my completely uncontrollable legs floated astray in their own "Free Willy" fashion, going where the current and my motion would take them. I had no control; my legs just bobbed up and down, lose and free. Unfortunately this lack of control meant I could not stabilize my upper body.

I tried a floating device, only to find that my legs bobbed up underneath the floatation, turning me over, rotating my head backwards, into the water. I tried going it alone, only to discover that I had neither the strength nor balance to maintain vertical stability. Again my face ended up in the water. The only thing I could do was sit in the submerged bench that ran along the poolside, or grip the rim of the pool and move along the sides, all the while being observed as an object of curiousity to the other denizens of the not-so-deep.

I finally admitted the reality; there would be no more "swimming"days for me. I got on the lift chair and got out of the pool. As I rose, chair bound, from the deeps, the conversation with the McBride's began once again. It seems our love of chat is genetic. Then they said Emma and I should come to the wedding, an invitation which quickly became an insistence. It was for Thursday at 4:00 PM. I said we might be out on a helicopter ride, to which they replied "Come when you get back." It seems another trait might be genetic; persistence, or perhaps stubbornness. We said yes, and I am looking forward to attending another McBride wedding.

I don't know why these things happen to me; they just do. It's the story of my life.

Tuesday, 21 October 2014

Hawaii Day Two

It's 11:00 AM. The steaming, humid heat of the tropics is well underway, wilting locals and tourists alike, bringing up a sweat that only the breeze from the open sea can dissipate. I sit on the patio of my hotel, iced coffee beside me, staring out at the open sea, the water near shore a subtle aquamarine, the far off sea melding to a ever deepening blue until it collides with the light blue of a distant horizon. This is Hawaii, the paradise islands set in the middle of the vast Pacific.

It is only our second day here and already we seem to be settling into a routine. We got up late, even though Emma is typically an early riser. She went to be early last night, at around 9:30 PM. I stayed up late, sitting in the seaside patio bar watching the manta rays glide by in the artificial lights set up by the hotel to encourage them. These are graceful creatures, floating on triangular wings through the shoreside shallows, rising up from the depths, their black tops making them appear as shadows drifting through the sea. They turn, doing a gentle roll, exposing their white underbellies, a tip of a wing slashing the edge of water, flashing white against the lights on shore, then the descend again, completing their circular display only to return a few minutes later, once again to dance for us.

These islands are a dream, a place of gentle rest amidst a sea of distraction. It is no wonder that they have entranced so many nations, turning their lushness into a greed for possession. Yet they are not a safe as they would seem. Yesterday the island was still dealing with the aftermath of a nearby hurricane, massive rains leaving water pooled in many places, the humidity even higher as the land and sea both seek to evaporate the remnants of the storm.

The land itself is thing, arable soil only a skim surface atop a base of volcanic rock. The beaches themselves are sparse on this big island, unlike to rippling silver sands of Oahu or Maui, those more touristic islands most people envision when one says Hawaii. Here on the big island from which the state draws its name, the beaches are smaller, more distant between, the surfaces of sand much thinner. Here, Pele, the Hawaiian goddess of volcanoes, is still active, still building the rocky base underneath this thin strip of mankind's construction. Homes on this island are still taken by lava, new land is still being created as it hits the sea.

Today, it will be a poolside day with perhaps a dinner excursion into the town of Kona, a non-trivial cab ride or long bus ride. My hope is that the bus can take a wheelchair. If not, I will spend the money and take the cab. The upside is that the cab will be air conditioned.

Monday, 20 October 2014

The Meaning of "Cannot Walk"

Sometimes the time zone change works for you. Here I am in Kona, Hawaii. It's 10:30 AM local time. Back in Calgary where they are having what may be the last in a series of beautiful autumn days, it is about 5 hours later, about 3:30 pm. It doesn't really matter; I need the rest.

We made it to Hawaii almost without incident, at least in my version of things. It is always interesting for me to watch another person traveling with me see the trials that go with voyaging paraplegic style. What I consider normal, they see with new eyes, shocked by the lack of thought or realization that most travelers in wheelchairs encounter. Emma got this bit of education yesterday; for me it was simply more of the same.

Calgary Airport wasn't all that bad. Westjet checked us through in a timely manner. They assigned a couple of agents to get us to, and through, security. We made our way to the security line, right up to the screening stations, at which time the Westjet agents disappeared, never to be seen again. Then, when we boarded the plane, the gate agents assisting me could not get the arm up on the seat bench, so they had to help me transfer over the armrest and into my seat.

The next education for Emma was in LA, where the gate crew did not understand the meaning of "cannot walk", failing to arrive with the skinny chair to assist me off the plane. So we waited, and waited. Finally someone figured out that I was not going anywhere without a wheelchair. They eventually came and got me.

Thank goodness we had plenty of time for our transfer; we needed it. In LAX, we moved from Terminal 2 to Terminal 5, where they put me in the "wheelchair waiting area". There we waited, until almost the last minute. The airport staff assured me they would get me to the gate before boarding ended, at which time I pointed out that I could not walk and needed to be there when boarding began. They looked surprised, as if the term "cannot walk" was completely new to them. Once they realized the need for immediacy, we managed to get underway, once again through security and finally to our gate.

On this flight, from LA to Kona, once again the gate crew, nor the flight crew, could not figure out how to lift the arm rest on the seat bench. Once again I was asked to stand. Once again I said "cannot stand". Once again I was manhandled up, doing much of the work myself, and rolled over the armrest into my seat. This procedure was repeated on arrival at Kona.

I take all this stuff as a normal part of wheelchair travel. As one flight attendant said, "So many people use the wheelchairs when they don't need them. They can all walk. So we are surprised to see someone who really can't walk." There are times when you need a wheelchair even if you can walk, but I didn't have the energy to correct her; she was trying to explain why most airport staff don't get it when you really mean "cannot walk."

It doesn't really matter. I am in Hawaii. The only real incident on the trip was Emma's luggage. It didn't arrive with us. It will be here sometime this afternoon. Now that is something we can all understand.

Sunday, 19 October 2014

Hawaii Without Fear

I am off on another adventure this morning, a trip to Hawaii, Kona to be specific. I love adventures; this one may even include a helicopter flight over a volcano! The woman who is going with me, Emma, is on her own kind of adventure. Eight years ago she had a very serious stroke. While she has traveled a bit on her own since, I think this might be her first major trip without her parents along to help. Other people are having adventures too. My nephew got married yesterday; he is headed on a new life path along with his new wife.

When  I was at the ALS Support Group meeting yesterday, a couple of people seemed surprised that I would travel so much "with ALS". Others didn't seem at all surprised. In the online ALS forums I have heard from many people who have given up travel after their diagnosis. Their reasons are many, some fear that they can't get travel insurance, some fear the difficulties they might encounter, some are just plain embarrassed to be in a wheelchair. Fear is the common thread for all of them.

Another of my friends said to me that I shouldn't post on Facebook or my blog that I am out of town; someone might see it and know I am not home. They might break into my apartment and rob me. Of course I am not afraid of that; I have very little worth stealing, perhaps just my TV and sound system. Oh, and liquor too. Once again the common thread is fear.

I can live my life one of two ways; in fear of what might happen, or face the fear and do it anyways. I refuse to allow fear to define my life. As the venerable Dr. Seuss says in his wonderful story, Oh, The Places You'll Go!; “You have brains in your head. You have feet in your shoes. You can steer yourself any direction you choose” Fear will be there, risk will be there, misfortune will be there, and yet it is up to me to choose my direction. I choose life, in the face of fear.

So I am off to Hawaii. I hope I don't get a sunburn. Of course there are ways to prevent that, so don't have to be afraid. If I do, I can just lay in bed for a day and it will settle down. At this point I don't think it is skin cancer I need to worry about.

Saturday, 18 October 2014

Good Fortune

There are days when I am pretty sad about my situation, hit low by my disease and what it has done to my life. Then there are days when I am reminded of how fortunate I am, how lucky I am to live the life I get to life. These days, like sun on a summer's afternoon, are a warmth in this winter of my life, a chance to remind myself of how great it is to be alive, how living is a miracle all in itself.

Today I went to the local ALS Society Support Group meeting. It is a monthly get-together for PALS and families here in the Calgary area. As you might suspect, it is a group whose population changes on a monthly basis as new people come in and others leave; by leave I mean die. You might think these events could be very depressing; with the wrong mindset, they certainly could be. It is, however, a testament to the people within the ALS Society that these meetings are often informative and uplifting.

The topic today was transportation and driving with ALS. I had been asked specifically to be there so that interested people could see the modifications to my truck; the lift system, the hand controls, the wheelchair crane. There was also a fellow there from Shopper's Home Health Care, a division on Shoppers Drug Mart, who talked about wheelchair vans and conversions. He, also a fellow in a wheelchair, brought a demonstration model for us all to see.

After a bit of talking about the whole driver's licence process as well as the vehicle modification options, we went outside to take a look at the demonstration van, and supposedly, at my truck. Everyone was fairly interested in the van; nobody came to look at my truck. I guess I was a bit disappointed. So I went back inside with everyone else for the social bit at the end.

I stuck around for a while, waiting to talk to Jane, the ALS Society Client Services Manager; I am a client. We talked about the van and truck, to which she commented that "this really isn't the group for hand controls." Most of the people in the room had "real" ALS, the kind the affects all of your body at once. I, on the other hand, have what is known as Progressive Muscular Atrophy, a kind of ALS that starts in one area and moves rather slowly to the other parts of your body. Mine started in my legs and has move slowly into my upper body; eventually it will get to the rest of my body, but not yet.

I asked Jane how many other people with PMA were in the local cohort and she said "None. We rarely see people with PMA like you." That's when I realized how right she was, and how fortunate I was. Even with a terrible disease like ALS, there are those who get it better and those who get it worse. Comparison is always a dangerous thing; we are prone to only see those better off than we are. Yet I did compare myself to the group, and realized how lucky I was that I could still drive, still travel, still had the enthusiasm, the energy to live.

This is a terrible disease; never misunderstand how hard it is. Yet as I drove home from the support group and as I sit here now, I continue to appreciate how fortunate I am. It's a funny kind of thing.

Friday, 17 October 2014

The Small Hours

I've just gotten home from one of my infamous "nights out". This is where I head out for a social engagement with one group of people, then transfer to another, most commonly at the Cat 'n Fiddle Pub here in Calgary, but often as not at other places too. I just seem to find social people and groups in all kinds of places, where ever I go. It works that way for me.

Tonight was a typical night. I started out with the youngsters, a group of 30 somethings, at Name That Tune. It always surprises me, the welcoming inclusion of this collection of young men and women who by rights should find no reason to hang out with me, or to let me hang out with them. Yet they do. In fact more than once, when I have chosen to be with another of my groups at this particular weekly event, the kids have gotten rather miffed with me at my "rejection" of them and preference for a group more reflective of my age and social group.

Tonight was more than typical. They included me in their conversation, listened to when I had something to contribute, forgave me when I was incorrect. When the time came to dance, they did their best to get me going in my wheelchair; tonight was a great example when they were all doing the "Locomotion". I became the engine at the front of the train and they pushed me about until I was too tired to go any more. I didn't ask; they just included me. I felt involved, a part of things.

As their evening came to an end, I moved to spend time with the "regulars". These are the people who are there on a consistent basis, either friends of the owner or friends of the staff. I've been spending more and more time with this group on Thursday nights, plus other nights when I am nearby. They too have included me as a part of this constant social set, one of the folks who is just a part of things.

As the evening wears on, and the public leaves, I hang with the staff. They have also "adopted" me. They include me in their stuff, talk to me about life in the bar and life outside the bar. They share their frustrations, difficulties, successes. They talk about what it's like in their life; I listen, sharing the odd comment when I can. If you know anything about me, you will know that perhaps it is more than the odd comment.

In the end, it becomes a very late night, something creeping into the small hours of the morning. I love this, that I can live in both the day and the night, that I can have a life that goes beyond the simple or ordinary. I have the most interesting of lives, one filled with the energy of those young people, the cares and concerns of those "regulars", and the one on one with the people who live in the twilight hours. Who could ask for a more interesting life?

Thursday, 16 October 2014

I Write

What would happen if I didn't write today? Would the world come to an end? Would everyone think I had died? Would people wonder what was wrong with me? The consistency with which I post seems to have become habitual, not just for me but for others as well. In fact there are days when, if I write late as is happening today, I get emails and messages from my Mom or friends checking to see if I am all right.

Writing every day takes discipline, a kind of fortitude that requires marshaling of mind and thought in order to produce something at least moderately coherent. Some days it works; other days, not so much. Sometimes I really have to make myself think, force myself to ponder or wonder in order to put pen to paper, digitally speaking. I've never really had this kind of discipline in the past; I've tried blogging and posting, to no avail. I've always stopped when it became boring to me. This time, however, there is more involved than just me, more than just an idea that this might be interesting. This time, it means something.

I started this blog as a sort of therapy, a way of expunging by word the thoughts and feelings taking hold in my mind, a way of cartharsis. It started as something I had to do in order to help myself through this journey with ALS. It's gotten more complicated as time as gone by. I now find myself being used as reference for others, as a research source for those who find themselves in my shoes. It's also become a way for friends, family and followers to keep an eye on me, on my moods and well-being. It is true that I will say things here that I might not say in a conversation.

Writing as become, for me, self-expository, a way of telling my story to myself as well as to others. It has become a tool of introspection as well as a tool of expression, allowing me to look inward on a daily basis, and to share what I feel through this medium. Were it not for the blogging technology, this would be a shadow in the mist; my penmanship is terrible. I print in block letters, rarely recoursing to cursive. It is the combination of my life and this technology that allowed me to start and enables me to continue.

From catharsis, to self-healing, to sharing, to learning; it's been a journey that works in such a unique way, a journey that I plan to continue as long as my fingers can hit the keys. Some days it is work, some days it is joy, every day it is different.

Wednesday, 15 October 2014


It's cloudy, overcast, and a bit rainy here in Calgary today, the kind of day that looks more like the coast, more like Vancouver, than that which we usually see here next to the wide prairie. This weather front hangs on, low and grey, a skein of light clouds, wrapped up one with another, covering the sky from horizon to horizon. The rain has been on and off all day, light and misty, leaving drops of moisture hanging from the branches and leaves of the trees outside my window.

This is the kind of day when indoors seems the most natural of places, when a cup of coffee and visitors is the best way to spend the day. That is what I have done for most of the day today, sat with a friend, enjoying a hot coffee and a couple of fresh bagels. We chatted, spent time talking about life and family and friends, that easy kind of chat where time passes quickly.

It was an early start to the day, my phone going off early as Emma tried to gain some sense of our agenda for Sunday; we are headed to Hawaii for a week and she needs to know so many details in order to feel comfortable with the travel. I, one the other hand, am a very different traveler. A lifetime of experience has taught me to relax around these details. I know for a fact that there is more than one airplane at the airport; if I miss one, there will be another soon enough.

The texting started early. If I could have, I would have turned my phone off. Unfortunately my Mom took a fall last night and was taken to hospital. She cracked her pelvis; not a full break but enough of an injury that she will be off her feet for several days and not walking for a few weeks. My phone was on alert for updates from my brothers or Ray.

Homecare came at 1:00; it was another new person this time however she was much better prepared for my Range of Motion exercises plus a supervising nurse came along to review them exercises with her. This woman has been here before to do home making, what they call housekeeping, so I was familiar with her. She has a nice personality, is helpful and non-threatening. These are all good things. After homecare, my friend came to call and at the same time my Mom called, giving me a front line update on her condition. She will be in hospital for a few days.

Now it is late afternoon, or early evening. I have spent the day at home; now, as night approaches, I am headed out to do errands. It's almost upside down, staying home all day and heading out a dinnertime. It's such a short day, from 10:30 AM to 5:30 PM. I have about 6 hours left this evening, then I sleep and start all over again tomorrow. It's called routine, except for the rain. That's different.

Tuesday, 14 October 2014

My Funeral

I've been thinking about my funeral lately. It's not a morbid kind of thing; it's the kind of planning that we should all do, the forethought required to make it easier for those left behind to deal with my remains. In some ways, it is kind of fun, as odd as that sounds. I think about what I would like done with my ashes, where I would like them spread; it reminds me of of the many places I have enjoyed so much over the years. Then there is the whole party things; I smile just thinking about it.

There are actually two options I have in mind for my final departure. The first is the Viking funeral option. I think it would be so cool to go out Valkyrie style, my body set into the frame of a small boat and pushed off shore, fire arrows shooting into the sail and hull, the flames from the tar soaked timbers rising black into the sky against the setting sun.

I envision this happening somewhere deep in the Broughton Archipelago, perhaps near Village Island or somewhere up Knight Inlet. Another alternative would be somewhere in Checleset Bay, off the west coast of Vancouver Island, or even somewhere in Desolation Sound, perhaps just off of East Redondo Island. Once the flames had finished with the wooden hull and my body, I would hope it all simply sinks under the weight of the various attached personal articles, like my weapons and shield. All I need to do is buy a shield.

The final step would be a party somewhere. Since I am dying with no money left, it will have to be a self-purchase bar. I apologize for this; it is what it is. Nonetheless I would hope that people would gather together somewhere, perhaps at a local pub or even possibly a rented hall, and spend some time telling nice lies about me, making me seem a much better person that I really was.

Since option one is highly unlikely thanks to cost and the Coast Guard having this thing about flaming boats on the pristine waters off the coast of BC, my second option is much more realistic. I would like a very simple cremation using the cheapest possible cardboard box as my casket. After all, it's going up in flames. You can do a "visitation" if you want but I am not in favour of them. I've seen dead people; they don't look as good as they do when they are alive. If you want a visit, do it while I am still here.

Once I am cremated, don't use some fancy expensive urn for my ashes. A cardboard box will do. After all, it's just ashes; I will be long gone by then. Take the ashes, safely secured in the box, and find a place to have a big party. Since I will be dead broke, you can ask for donations to cover the hall and people can buy their own liquor. However please make sure all of the wine left in my wine cellar is used at the party.

I don't really care about the location for the party, but I like the idea of seeing if the Cat 'N Fiddle pub will do a private function for it. After all, it used to be a mortuary. It's fitting. This would be an open party for all who wish to attend. Once again, people should feel free to tell stories that make me seem much nicer than I really am.

After the party, take my ashes to the coast. If you want, do another thing there for the folks in BC, perhaps in Abbotsford somewhere. Once again, don't spend a lot of money. I'm dead and cannot cover the costs. However, along the drive from Calgary to Vancouver, stop in a few mountain glades or beside a beautiful lake, and sprinkle a bit of me there. I love the mountains, the hunting, the fishing. When you finally get to the coast, ask one of my friends with a boat to take my ashes to sea. Once again the Broughton's or Desolation Sound spring to mind.

There is one last thing that really is important to me. When I die, soon after I die, please have a gathering of "the gang" along with my kids, my brothers, and Mom and Ray, here in my apartment. Drink the last of the liquor, except for the wine that might be needed for my funeral, eat the last of the food. Empty the fridge and pantry. Pretend that I am there with you; I will be. There are things here that belong to the gang, things they have left in my care. There are things here that some of them should have; I am sure you will figure it out. After all, these few things around me are really all I can leave behind.

Monday, 13 October 2014

African Princess

I had a bit of trouble getting my pants on today; nothing serious, nothing unexpected, nothing dramatic. It was just that incremental, small bit of extra effort that I needed today as compared to a couple of days ago. I didn't put pants on yesterday, so perhaps that is why I didn't notice it yesterday.

Today one of my regular home care workers, one of the good ones, the 27 year old African princess from Addis Ababa, was coming to do exercises. She is a beautiful young lady with caramel skin and perfect teeth, long curly hair and an exquisite figure. She is Muslim, but not conservative; she laughs and smiles at almost everything, despite working many long, hard hours to send money to her family in Toronto and in Kenya. Her husband is back in Nairobi, awaiting clearance to immigrate to Canada and join her.

Getting dressed is a requirement for these exercises. It made me think about what is coming down the line. I began to ponder how I will dress myself when my arms weaken sufficiently that I cannot lift my legs up to put on pants and underwear. What will happen when I cannot roll enough from side to side to inch my clothing past my rear end? How am I going to get my underwear over my feet and up?

These are not thoughts in panic. These are thoughts in planning. If I think about these things well in advance, I will have a strategy in hand and the tools in place to help myself, to maintain my independence just a bit longer. One day, of course, it will all come crashing down. One day I will need help with these most intimate of tasks. This is the kind of thing I have to think about.

Simple acceptance does not come easy. I cannot just say to myself "Oh well; that's how it goes." I may be able to say that to others, to voice that thought calmly in public. Inside, however, there is a much different dialog going on. Inside this dying body is a mind rebelling at each new limitation and failing. In order to manage this process, I need to plan for ways of accepting as well as fighting the changes in my body.

I already have a foot strap, but once my arms are sufficiently weak that I cannot pick up my legs, the strap won't do much good. I have the lift system by my bed; that may be of some use. I may have to learn how to get dressed while fully prone, using the bed to hold my legs and somehow making whatever is left in my arms do the work of pushing and pulling as much as possible.

Or, I may just have to accept the fact that I will have reached the point of complete care. I hope they assign the African princess to look after me. I like her.

Sunday, 12 October 2014

A Shaky Start To My Day

I'm shaking pretty badly today. It's not a violent kind of shaking; it's a subtle shaking reflecting the weakness of my body in general. I am no longer strong. I am no longer capable of throwing off a really busy day and moving into the next one. A busy day for me means I need a day of rest afterwards. Yesterday was a very busy day, and I stayed up late.

It has been a motto for me that "If you can't do the time, don't do the crime." In a non-criminal perspective, it means that if I am not willing to suffer the consequences of my actions, then don't do it. The problem I have these days is that I am not entirely certain what any given set of consequences might be. A late night might simply mean sleeping in the next day. A busy day might simply mean going to bed early or sleeping longer. On the other hand, there are days, like today, where the consequence is far greater than I expected.

Of course the truth is that I had a bit of wine last night, perhaps a bit too much. My past experience with this has always been to get up and face the day, rise above my body's limitations and push myself through. I can still do this some days, even with ALS. On the other hand, some days I cannot. This is one of those days.

Part of the problem might be that I have nothing on my agenda for today, nothing planned, no responsibilities. That means I can sort of "give up" on making myself go. Since there are no imperatives in my day, I can sleep until late in the afternoon, eat when I get up, give my body a chance to feel bad. I find I do much better when I have things to do. When there is no plan, I do nothing; that's not really a good way to live.

Tomorrow will be better. Tomorrow I will have recovered from yesterday. Tomorrow I have things to do, things on my agenda, things planned. That will help me get up and go. I don't know what it will do about the shaking, but I won't have a lot of time to think about it. I can focus on what I have to do, not how I feel.

Saturday, 11 October 2014


I am hosting a party today, something I love to do. I come alive when company comes over, when I am surrounding by laughter and talking, but the smells and sights and sounds in the kitchen. Today is a combination Thanksgiving dinner, a holiday which comes one month earlier here in Canada than it does in the USA, leading to untold confusion for my friends below the border, and a wine bottling party. One activity neither precludes nor includes the other; it was just convenient to do them both on the same day.

Preparing for a party has become a much bigger challenge for me than in years past. Almost everything is more difficult; some things have become impossible altogether. Still, this morning I made turkey stuffing, stuffed the bird and got it going in the oven. Since then I've gotten out wine bottles and started cleaning them in preparation for tonight.

Thankfully, a few of my friends are coming over early to help with the rest of the food preparation. Brad will be here in a few minutes and Karin is coming over later on. Brad will help with the wine bottles and then with the cooking. Karin will pitch in once she gets here. With their help, I will be ready. Of course I am not supplying all the food. Everyone else who attends will be bringing something as well. That's one of the great things about my friends; they all show up with a willingness to help, a willingness to contribute, and a big appetite. I love it!

It's not just my friends that I am thankful for today. I have so much to be thankful for, so many people around me that make my life worth living, that keep me wanting to go on. I am thankful for my parents. for my Mom and Step-Dad Ray; and I am thankful for my Dad who passed away in 2010. I am thankful for my brothers, Adam, Peter, Jim and Matthew, and my step-brother Michael. I am thankful for my step-sisters Laura, Erin who passed away the same week I was diagnosed, Susan, Rebecca, and Lisa, and for my half-sister Sarah. I have a complicated family, and I am grateful for the impact they have all had on my life.

I am thankful for my children, the most blessed outcome from my marriage. I love each and every one of them, just as they are, where they are, and for who they are. Mary, Meaghan, Kate and Rick are the most important things in my life. I am grateful for each moment I hear their voices, read their emails, see their posts online. I am thankful for my grandchildren, Charlotte, Rose and little Quinn.

You see, I have a lot to be thankful and grateful for. It would be so easy to become bitter in my situation, to see only the bleak future that awaits me, forgetting about all that is around me today. I am thankful that I am not built that way, that I can remember how much good there is around me, to treasure all that life has to offer. I live a life of thanksgiving, and I thank you all.

Friday, 10 October 2014

Terrible Home Care

I've settled down enough that I can write about this. For all the strength and presence I have enjoyed over the years, these days I can get pretty rattled fairly easily. I don't know if my abilities have changed or if my fear has increased, but I find myself easily upset at times, especially when it comes to the Home Care people I have to let into my home now and again. Some of them are incredibly good; others are completely incompetent. Sometimes the whole agency, a company called CBI Home Health here in Calgary, seems out of touch with what they are supposed to be providing.

Today was a bad experience. My regular care worker is on vacation, visiting family in Toronto. She is very good at her work and I enjoy having her in my home. I know she cares about me; she is very kind to me and very encouraging. She even went so far as to text me yesterday to see how my clinic visit went on Wednesday. I like her.

While she is away they are sending another person to work with me. They are supposed to send competent, trained people who understand the nature of my exercises. If the person has not been trained, they are to send a supervisor to walk through the exercises with me. This systems has been hit and miss in the past; today it wasn't simply a miss, it was a giant miss.

The person sent by CBI Home Health had been here before. She is a new immigrant who barely speaks English. She is in her mid-fifties, heavy and difficult to communicate with. I don't care so much about all that; what I really care about is that she has no idea how to do my exercises and she is unable to read and interpret the Care Plan. She simply cannot do the job. This was the second time they sent her as a fill-in, with no regard to ability or capability, and no supervisor to boot. I told them last time not to send her, yet they sent her once again, completely unsupported and unable to care for me.

I told the care worker that she couldn't do the work and asked her if she could leave. Then came the upsetting part. This particular care worker does not understand how to use a cell phone; they have to check in and check out with my phone to confirm arrival and departure. This way the agency can confirm that they are, in fact, in my home when they say they are. It is a management and control system and I understand its purpose. However, since she cannot figure out how to use a basic cell phone, she made several tries, handing the phone back to me each time saying "Doesn't work."

I finally got frustrated to the point where I said "Tell me the number and I will dial it." She replied "I don't know number, only to dial it." This went back and forth several times and would have been comical had her tension not risen with each attempt. Finally I said, "I will just call the dispatch desk."

Then she got very agitated and said "No. They don't know this number." I am not sure what the hell she meant, but she refused to leave and refused to let me call the agency. I finally called regardless of what she said. Shen then refused to talk to her dispatch desk, saying she had to call this other number. I told the dispatch desk she wouldn't talk to them. Then the desk called the home care worker on her own cell phone; apparently she knows how to work that one. They told her to leave. She left.

Afterwards I called CBI Home Health and told them how upsetting this experience was, and that I never, ever wanted that person in my home again. This is part of the risk of using a home care service. You let strangers into your home, hoping that all will be well. Usually it is; sometimes it is not.

Thursday, 9 October 2014

Focal Length

I see the world through a different lens, a lens with a short focal length, the near term in sharp edged detail, the immediate in brilliant clarity. The further out I go, the blurrier it gets. You might say this is normal, that all of us see the world this way. The only difference for me is that further out is not all that far, that the distant future lies within the next year or so.

These changes, these events that have overtaken me, have caused me to ponder more on the daily aspects of living, on the things I do in the moment. I don't worry so much about the longer term effects of my decision. I don't worry so much about what might happen next year, or the year after. I spend more time looking at the next 90 days; that is my time horizon.

There are people out there who tell me I focus too much on the fact that I am terminally ill. After all, they say, everyone is going to die. I wonder, when one of my thirty-something friends says something like that, if they are distinguishing between the practical reality of near term demise or the long term theoretical end to a life well lived.

Other changes drive my focal point as well, changes in my body. Last night I had a dream. In the dream I was standing up, walking. Then, right in my dream, I appeared to myself in some sort of quasi-waking way and said "Don't be silly. You should be in a wheelchair." I think I am finally adjusting to the loss of my legs. What comes next I don't know. I just know that it takes time for the mind to adjust to the body's changing reality.

So the subconscious within me rebels at the loss of ability and the idea of imminent death. My daily life cannot be lived this way; it would be far too overwhelming. My mind still sees me as hale and hearty and strong and living. Inside my thoughts, I cannot escape the patterns that would be here, my body not in a battle with ALS. My mental focus has astigmatized, the refraction of my life before ALS blurring the view of my life today.

It is an odd thing, my mind working one way and my body working another, the two in constant conflict, struggling with my mental image versus reality. I have to keep checking to be sure I pay attention to the right one.

Wednesday, 8 October 2014

Clinic Dreams

It's clinic day today; the day where I make the long trek to the Calgary South Health Campus, pay the $13.50 for parking, go up to the ALS Outpatient Clinic on the fifth floor, and have them tell me pretty much what I already know. In fact they don't really tell me anything; they ask me things. After I tell them, they go "yep, seems like that to us too".

I am pretty sure I know the outcome of this visit already, and it won't start for another hour or so. They'll tell me my progression is slow but steady. They'll tell me that my arms are fulling involved and getting weaker. They'll tell me I need the new dosage of medication for PBA. They'll tell me they are not sure how long I have, but it is most likely within the 12 to 24 month range.

There is a game I play with myself on these days. Actually it is more of a dream, a hopeless dream, that I play inside my mind as I make my way to the hospital. I have this dream that one day, in the midst of one of these clinic visits, they will say "Gee, Mr. McBride, we were wrong. It seems you don't have ALS after all. You have blah, blah, blah that imitates the symptoms of ALS. It can be easily cured by getting rid of the blah, blah, blah in your system. The damage isn't permanent; you are going to get better."

This is, of course, a hopeless dream. It's just not going to happen. There are other, less hopeless dreams I can have, dreams that might possibly come true. I can dream that my progression will slow even more, almost to a stop. I can dream that there might be a treatment for ALS before I die. I can dream that there is a way to stop my hands and arms from shaking as they get weaker. I can dream of all these things, and there is always a distant hope. I suppose that is mostly what keeps me going in this hopeless situation.

There are those who will say "At least you didn't have Ebola". I would happily trade; at least half of Ebola patients survive the disease. There are those who say "You can't give up fighting". Sure I can; in fact one day I will give up fighting. It's just reality. There are those who say "You've got to think positively, have a positive mental attitude". In the face of this awful and insidious disease, I think I do a pretty good job of staying upbeat and lively. One day, of a certainty, all the PMA on the planet will not stop this disease and it will kill me. I just try not to think to much about that day.

I think of all of this stuff when I go to clinic. Mostly I try to find ways to deal with the everyday stuff that goes with ALS; medications for PBA, medications for DVT, medications for clonus and spasticity. All the rest of that stuff is just dreaming.

Tuesday, 7 October 2014


I like to keep a full calendar, to have something in each day that gives me a reason to get up and go. I've always said that the first step in dying is not getting out of bed; I get out of bed each day, even on those days when staying in bed seems like the best thing to do. Having something booked everyday helps.

Today is a good example. Once again I had a bad night last night. This inability to sleep at nights is fast becoming thematic for me. I go to bed, I doze on and off, and finally, sometime between 4:00 and 6:00 AM, I actually achieve slumber. After nights like these, getting up in the mornings is tough. Now add the absence of something in my schedule, and I have no reason to get up and get going. So I stay in bed; today I finally got out of bed at 2:30 PM.

When I am in bed like this, I rest. Given that ALS leaves me in an almost constant state of exhaustion, the idea of rest is continually appealing. At any given moment, I am fully capable and happy to lay my head down and simulate sleep. Of course I am actually just resting, dozing and lazing about, until I need to get up again. Today, I did just that.

Now that I am up, I will sit about, have a shower, watch some TV and generally do nothing. Then, at 6:00 PM, I will head to the Unicorn Pub for my trivia night. I will stay out until about 10:00 PM, then come home and go to bed, perhaps after reading for a bit. By midnight I will realize that sleep will once again be slow in coming. I will close my eyes and rest, continually rest, until slumber arrives.

It's not much of a day, but at least it has something in it. I will see my friends tonight and enjoy a social evening. That's enough to get me out of bed today. That's all it takes; a bit of life in my life. But I am going to talk to the doctor about a sleeping aide.

Monday, 6 October 2014

Whole Lot Of Shakin' Goin' On

My hands shake a lot these days. The odd thing is that they don't shake with gross motor control, so you don't see it so much when I pick up a glass or pass a plate. They shake with fine motor control, so you can really see it when I do things like open a bottle top or peel an egg. It is another one of the oddities of ALS, that the fine motor control is what goes first.

The most difficult part of the shaking is that I drop things. Once again, it's not the big things that I drop. If I take the lid off of a bottle of soda, I can hold on to the soda just fine. It's the cap that goes flying. I can drive just fine but my hands shake when I try to put the key in the ignition. I spill almost every time I pour something; the container is safe in my hands, I shake and spill when I pour.

This kind of loss of muscle control is the beginnings of a more serious event, one that will end with the total loss of muscular control in my hands and arms. It is the equivalent of toe drop in my legs. It is not, however, the only kind of muscle challenge that goes with this illness. There are actually four different kinds of shaking going on.

The first, the one that I am talking about here, is a result of general loss of muscle tone. It is the weakening of my arms that causes my hands to shake, even though my hands themselves remain reasonably strong. This is a kind of spasticity occurring in those muscles I have which still function; it's the kind we all get now and again when we overwork a particular muscle or set of muscles. In other words, it's normal and we all get it.

The second kind of shaking happens mostly when I get up in the morning; it's called "clonus". It is a violent kind of shaking usually triggered by muscle extension or reflex action, like stretching when you first get up. It occurs across my upper body, most noticeably in my hands and arms, but also in my neck and head. Clonus is thought to be a result of damage to the upper motor neurons, something that clearly happens with ALS.

The third kind of shaking is simple muscle spasm, also known as spasticity. This happens most often during my Range of Motion exercises, what I call my stretches. When any of my weakened or dead muscles are stretched, they spasm. This means they contract and release rapidly, uncontrollably. Most spastic episodes happen when my care workers are pushing my muscles hard, particularly my hamstring muscles. Spasms also happen when I overwork any muscles on my own, such as when I try to hold something heavy for too long, such as a jug of milk or a box of wine bottles, as mentioned earlier.

Finally, the fourth kind of shaking is my old friend, the "fasiculation". This is the small contraction and release of muscles in those portions of my body under attack by ALS where there is still some level of muscle activity on my part. These mild muscle movements are a forewarning, telling me that bad things are happening. There were plenty in my legs before they died; they now happen in many parts of my upper body including my arms, my diaphragm, my eyelids, my cheeks, and so on. They are just wierd; they happen all on their own and I get to watch.

All in all, there are a lot of things that make me shake. So there's a whole lot of shakin' goin' on.

Sunday, 5 October 2014

My Best Investment Ever

I've been thinking a lot about money the last few days, mostly triggered by my Statement of Account from the Canada Revenue Agency and a recent parking ticket. There is a reason they call ALS the "bankruptcy disease". When I got sick, my costs took off, my living expenses remained the same, and my income plummeted. This is the pattern for most PALS. I've been thinking about it a bit more this morning, but also a bit differently.

I had a financial plan for retirement. It was pretty simple. Pay off the house. A few years before retirement, buy new vehicles so I could pay them off before retirement. Maybe even buy a newer boat if things worked out well. Hit age 65 with a mortgage free home, reasonably new vehicles, and about $350,000 to $500,000 in our joint RRSP's. I was well on the way to this, and then came the financially devastating divorce.

Now it's a race between me and my RRSP to see which runs out first. In the beginning I thought my RRSP would live longer than me; now I am not so sure. I seem to be doing better than expected; not a lot better, but enough that I am fairly sure that when my RRSP runs out next June or July, I will still be chugging along. At that point things will be very difficult; we'll have to see how it works out. All I know for sure is that Visa and the CRA are going to get a bit of a shock.

As I look at how I did investing over the years, I must say I am fairly pleased with myself. I made money on my home, or rather my wife and I made money there; I've made money on both the apartments I owned when separated from my wife. I did well with the investments in my RRSP. I had savings in the bank and had finally purchased the vehicle of my dreams. Then came ALS and it put a stop to all that.

I know others who have done much better than me financially; made more money, kept more of what they made; perhaps lived more frugally. I don't envy them nor am a jealous of what they have. I wonder at times if the price they have paid for having that money was worth what it cost them to keep it, but that is a different thing.

The thing that I have done, the place where I have invested most heavily, has been in my children. I have always tried to be generous with them, giving them opportunities and experiences, taking them on trips and travel, helping them whenever I could. I have always felt that the only real investments in life are the intangible ones. Sure, I would have like to have made and kept more money, but never for a moment would I have traded that money for the happiness of my children.

I am leaving soon. I will leave nothing behind me. Some will think that irresponsible. Some will think that laudable. I think it is simply another result of ALS. Without this disease I would still be investing in my children, still be helping them, still be working towards a future that is better for them than my past was for me. My children are the best investment I ever made.

Saturday, 4 October 2014

I Can't Remember

Memory is a funny thing. It works for some things and not for others; some stuff just sticks with you, whether by trauma or joy it is impactful enough to withstand the test of time. Other things pass from you, whether you want them to or not.

I can remember the day my Dad died, so clearly, my daughter sitting next to him holding his hand, Margaret, his long time partner standing next, his sons and grandson beside the bed, friends and loved ones at the door. I remember the second to last breath, the long pause, and that last breath that took us by surprise. I remember this; it was powerful.

On the other hand I don't remember all that clearly the births of my four children; they conflate themselves in my mind, one mixing with the other until I am uncertain which was which. I fail to remember the names of many of the people I used to know when I live in Abbotsford although a few will never leave me. I remember very little of my childhood before age 8.

Then there are the current things, the daily things I forget to do. I go to the store with a list and forget to read it, thus forgetting something on the list. I can't remember appointments without tracking them in my calendar, regularly making appointments for days when homecare is in or when someone is coming over. As someone said to me recently, that is why you have Outlook.

There are the things I wish I could remember. I wish I could remember the last time I stood up on my own, without a lift or pushing up on my dresser or using the M-rail on my bed. I wish I could remember the last day I walked unaided, without holding onto a rail or a helper or a cane. I wish I could remember the last time I looked into my cupboards in a straight line, seeing all that was on the shelf in a single glance. I wish I could remember what it felt like to be vertical. I should have marked those days, except I did not know then what they were.

It's not that life like this is bad; it's just different. I knew it another way once, a way where I was tall and strong. I can remember that. I can remember standing at the helm of my boat, jumping out of my truck to shoot a moose, climbing a hillside in search of deer. I can remember walking the streets of Paris and London unassisted and steady. I can remember climbing Glastonbury Tor in England and hiking the Goat Mountain Trail in Manning Park.

Yet I cannot remember the last time I lifted myself up, stood tall, and walked out the door. It seems like a long time ago.

Friday, 3 October 2014

Tea Tray Trouble

Sometimes things just bite you in the ass. I have been having trouble transporting things like plates and coffee cups and such. It's hard to do with one hand one the wheelchair and something in the other hand. I work at it, but it is getting more and more difficult. This is how I came to drop and break one of my favourite coffee cups the other day; I was trying to balance it on my lap while wheeling myself into the kitchen. It didn't work out well.

I've been doing this ever since I went into the wheelchair, this balancing act with things on my legs or lap. Up until recently it has gone reasonably well. Now, however, there are two separate problems with which I must deal. First, my legs have lost enough muscle strength that I can no longer adjust on the fly by. So if something wiggles or slips, I have no way to stop it. Second, my left leg is even more flaccid than my right, so if I put something on my lap across both legs, it is off balance and tends to slide.

Yesterday I wanted to solve this problem. I wanted to buy a bean-bag bottomed lap desk with a rim around the edge. These are exactly what we had for our children when they were little. They could rest it on their lap while on a drive or while playing, putting crayons and other toys on it, and those items thusly placed would not fall off, thanks to the edge of the desk. Unfortunately the advent of laptop devices, even for the smallest of children these days, means that this type of desk, with the bean bag bottom, flat top and edged, is no longer produced. Now almost all of these things are produced with edgeless flat tops, designed for placing electronic devices such as laptops, tablets, or DVD players.

What I did find was the classic tea tray with a plastic surface and wooden edge. However, as it is a classic, it has legs on the bottom and not a bean bag. This is important to note, as a bean bag bottom can be adjusted to allow for the unevenness of my legs, being pushed higher on one side than the other. The classic tea tray has a rigid, wooden bottom and thus cannot be adjusted to be made flat. Nonetheless, it seemed to be worth a try. I bought it.

I brought my new helping device home, unpacked it and carried it into the kitchen, placing it carefully on the counter. I arranged my lunch, getting out some leftover Chinese food and heating it up in the microwave. I put the tray on my lap and turned to get the food off the counter. The position of the tray and my lap meant I had to lean forward. As I leaned forward, the tray fell off my lap.

I picked up the tray and got a clean fork. Then I carefully reached for, and retrieved my plate, placing it carefully on my tray. That's when I noticed that the smooth surface of the tray didn't have enough friction to hold the plate, my drink, and my fork in place. They all slid forward and to the left, the low point in my lap. No beanbag, no adjustment, no level surface.

I moved carefully, finally getting my lunch into the living room. I transferred my glass to the table and tried eating from the tray; it mostly worked. What I have learned is that I need a gripping surface on my tray, and I need to keep looking for that beanbag one, the one my kids had. Sometimes newer just ain't better; sometimes things bite back.

Thursday, 2 October 2014

New Drugs, Old Problems

This is my first day on my increased medication for PBA. When I started the Venlafaxine last February, it had an impact almost immediately. Within a day or two the panic attacks and unexplained tears stopped completely. It seemed almost miraculous to me that something so emotionally debilitating could be resolved so simply. Here I go again.

Of course there are other issues to be dealt wit here. For example I think I still owe apologies to a few people. I am also not sure how long it will take for the higher dose to have an impact. I am already on this drug and clearly my body is building up a resistance to it; I am told this happens with most anti-depressants. In addition, while this dose is double what I was on before, it is only the normal dosage; I was taking a half dose prior to this. So I suspect it will take a bit longer to have an effect on me. Until then, I am going to continue with a reduced social schedule, at least until I feel like I have a better sense of control over my emotions.

The final part of this new regime is alcohol. I've noticed a substantial increase in my drinking over the last few months. I am now convinced that a large part of this is simple self-medication. The sad thing is that alcohol depresses your body's systems, counteracting the beneficial effects of the medication. When I started this regime back in February, I was asked to keep it to a couple of drinks a night; there is a known interaction with Venlafaxine and alcohol. I did, for a bit. Once I found no ill effects, I moved up the scale to three. Then, a few months back, it started to get worse and worse.

So now I am going back to healthy living, or at least as healthy as I can. I will once again reduce my beer consumption when I go out, and my wine consumption at home. I will do as the doctors say and keep it to one or two in the evenings until we see what happens. After that, I may go back up to three in an evening. Beyond that, it is pretty clear that there is danger there.

It seems almost unfair. I have a disease that will kill me soon enough, yet the drugs I take to control the wicked side effects of this disease force me to live a healthy life. I don't want to live a healthy life; it is much more fun to be naughty, an all round bad boy. I want to ride a motorcycle, wear a leather jacket, get into fights, drink too much, have lots of women... wait, I couldn't do that even when I didn't have ALS.

Perhaps what I really want is to get rid of this stupid emotional lability, and to feel safe again. It would seem to be the best thing to do, at least for now.

Wednesday, 1 October 2014

Mea Culpa, Sort Of

I think I am going to stay at home for a while, cocoon in and reduce my social calendar. There have been a few things over the last couple of weeks which have lead me to suspect that the medication I take for PBA is no longer working. The doctor warned me that this might happen, that my body would likely adjust to the mild anti-depressant that they give me to keep my IEED under control.

This is not my first run-in with this unfortunate condition associated with ALS. I first wrote about it in December last year. I also wrote about it when I started my medication, something called Venlafaxine, back in February. That is when the doctor warned me that we might have to increase the dosage or change the medication at some point. I think we are at that point.

I've noticed over the last several weeks a general decline in my mood, a soft slide into something like depression but not quite. I've also noticed that I am more emotionally needy, although I have always been that way. I've bounced around emotionally quite a bit. Then, finally, last night it happened; a full blown panic attack while sitting in the front seat of my truck, parked in the parking lot at Banker's Hall, on my way to Tuesday night trivia.

I didn't even want to go to trivia last night. I've seen that for a few weeks now, where the effort of doing something simply does not seem to match the rewards. I forced myself to go; perhaps that was the genesis of the panic attack. After it settled down I went to the Unicorn Pub where we play. There, for almost no reason I can understand, my emotions continued to bubble away uncontrollably. At one point, simply in response to a comment by one of my friends, I shouted, loudly, "Hey, give me a break. I'm gonna die in 16 months." Everyone heard it; it was very awkward. Yet there you have it.

I have also found myself, of late, more prone to other inappropriate actions and emotions. I have no control of this; I feel like I am an airplane, spiraling groundward, flames and smoke coming from me, headed for the ultimate crash. I am drinking too much. I am depressed and lonely too much. I am at the risk of engaging in self-pity, but I refuse to go there as much as I can.

I know my outburst last night caused some damage. I suspect other behaviours of late have also caused damage. I hope it is not lasting; I have few bridges left in my life and I cannot afford to burn any of them. To those I hurt, I apologize. To those I embarrass, I apologize. It's all I got.