Thursday, 28 February 2013


It's happening! The sun is rising early enough for me to see if when I have my coffee, and creeping north enough so that the glaring ball glows right in my eyes. It's bright enough that I have to shift to avoid the blinding. Spring is coming and the sun is announcing its pending arrival. It's a new day, and a new start.

Yesterday was clinic day. I will be assessed every few months at this stage of my disease. Once the disease accelerates I will be assessed monthly. Towards the end I will need daily and then constant medical care. This assessment was no surprise, just your typical good news, bad news story. The good news is that the ALS is not accelerating; it is moving exactly as expected. The bad news is that the ALS is not decelerating; it is moving exactly as expected.

The weakness in my arms is probably not an early indicator of onset in the next area. It is more likely related to being in my wheelchair. I use my arms a whole lot more these days. This, combined with my general tiredness and exhaustion, means my arms are just plain wore out. They need more rest than before. So that is sort of good news.

The "thickness" in my throat and tiredness when I speak is "interesting" and "we want to check that again in a few months". In other words it might be something or it might not. From an inspection perspective the neurologist was unable to tell a lot. He said "it's a small enough change that we cannot measure it, but if you think it is something, it probably is something." When I asked him about loss of speech he said "you will still be talking this time next year". For PALS (People with ALS) that is about as good as it gets.

I spent a good deal of time with the counseling psychologist. The trouble I am having with words, my general exhaustion and loss of focus; these are stress related in the opinion of both the neurologist and the psychologist. Stress is bad; I need to reduce my stress level. We also talked about suicide. Interestingly enough, the ALS psychologists are taught not to discourage suicide, but instead to focus on quality of life and reasons for living. I have both.

Today the sun is shining in my window. Today I am mobile. Today I can enjoy food, wine, friends, family, love and laughter. I want to get to know my children better, to be the kind of father they remember with pride and a warm heart. I want to get to know my grandchildren, to hear them talk to me, to read them a book, to take them fishing. I want to fall in love again, to meet someone who will love me back.

Today I have good quality of life. Today I have something to live for. Today I will live for today.

Wednesday, 27 February 2013

Clinic Day

It will be a short entry today. I am about to head off to the ALS clinic for assessment. This assessment is all the more important in light of my recent decision to leave work. My last day is planned for March 21st. This is not an easy decision; I love my work. This decision is mostly driven by my declining strength and ongoing exhaustion, along with the impact of stress on the speed of my decline.

Of course no decision comes without its side consequences. For example my ex-wife, through her divorce lawyer, is demanding proof that I am no longer capable of working. Apparently having a debilitating terminal illness is not enough to cause me to no longer pay spousal support. So I need to go to the doctor and get an another report. It should be easy; the doctor recommended that I quit work last November when I got the diagnosis.

Proving that I cannot work should be relatively easy. With any luck there will be no demand for an additional medical/legal report. The last one cost more than $1,200. I'm not paying any more for this kind of stuff, I will soon be living on my savings and a handicap pension. My condition has declined and that is impossible to refute.

I am now reduced to using my wheelchair and walker for all ambulation, except for shuffling a few steps with my cane, using the wall for balance and stability, as I make my way from my bedroom to the bathroom each day. There are new signs in my arms, the kind of aching weakness I originally noticed in my legs a couple of years ago. And I am beginning to have trouble with my voice weakening towards the end of the day.

My brother is fairly sure the coughing and increased phlegm is a simple sinus infection. I hope so. The problem is that it has been getting increasingly noticeable for the last month or so. My voice is different enough that people have commented on it.

So we will see what they say at the clinic today. And I will ask them to send an update to my lawyer.

Tuesday, 26 February 2013

It's Your Turn

Some of the comments I get on this blog are really interesting and supportive. It helps with my emotional state to know that people are reading, that people care enough to be interested in what I have to say. Some of you have asked how I do it, how I find something to write about every day.

The truth is that it is easy; in fact not finding something to write about would be difficult. There is so much in the world to see, to comment on, to understand. As many of you know, I have never been short of opinions or ideas. I am a McBride, I have never had a lack of something to say nor a lack of opinion. Having ALS simply focuses the mind and topic space. All I have to do now is commit those thoughts and ideas to electronic paper.

The other reality is that working on a computer makes it so much easier to write. In the old days, before the keyboard and before the blog, writing would have been a mechanical exercise, one of paper and pen. As a youngster my teachers bemoaned my penmanship, thinking that it was the key to my future. What they didn't realize is that writing comes in many forms, not just through a pen. It's not penmanship, it's word-smithing.

The blog allows me to share more than just my opinions. It lets me share my emotional and physical state too. My cousin Doug's wife, Anita, says I should ask if any of you would like to do a guest posting, a space where you can share something. This link to life, this line of thought is so powerful to me that I don't know if I am willing to share this space. After all, who could imagine a McBride willingly sharing so visible a stage. We are, after all, from a long line of story tellers and drama kings.

Still, the quality of that thought grows on me. I wonder, if given the space, what you would have to say. Could you write six or eight paragraphs to share? My Mom does it on a daily basis, so I know some of you could. What would you write about? What would you have to say?

You see, one of the things I am slowly coming to realize is that my illness is not all about me. It affects so many people in so many ways, not just my family but my friends, my co-workers, those who share my life space and time.

So what would you say? Would you like a turn?

Monday, 25 February 2013

Spam and Fraud

Hey! I got my first blog spam today. This blog is getting noticed! Well talk about your silliness.

The great shame of blog spam is that it represents another of the depredations lumped upon desperate people. We inflicted are once again inflicted by the purveyors of miracle cures, the propounders of unfounded crank medications, the deliverers of the dubious and doubtful. A few, a very rare few of these poor souls might actually have something useful to add. Ultimately most of them are simply using my misfortune to make a buck.

There is little any of us can do with these folks. Nigerian scams are called that because of their origin. The Canadian government, nor any other government beyond that of Nigeria, can do little to stop these leeches on life. There is little desire on the part of the Russian government to stop their source of origin; it's big business and that means big money. The little onesy-twosy operations here at home pale in comparison to the big time fraudsters beyond our borders. We e like our fraud to be legalized, commercialized.

Then think about the real fraud, the legitimized advertisers and online hoaxsters who make outrageous claims with little effect. My favourite target is the lottery commercial. They all show the big winner, a statistical certainty yet only for one out of millions. The odds are better of getting ALS than they are of winning the big one. All the advertisements make it seem like winning is a sure thing, that all you have to do is buy one ticket to win. True, but unlikely in the extreme. I call it a tax on those who cannot do math.

Dating sites are another one of my favourite scam sources. Try this. Sign up to a dating site for a month. See what you get in response. Then close your account. Suddenly you will be flooded by people who are "interested" or who "want to meet you". Why? Because in the background there are robot computer accounts artificially plying you with false hope, just so you will go back to their site and spend more money.

In the end, it's all about the money. What a shame. What a waste.

Sunday, 24 February 2013

What Next?

It's a typical February day in Vancouver. It's cold; it's wet. There is a building wind out at Point Atkinson. By this afternoon the seas will be white with foam, heaving, weaving like a hungover drunk. I am trying to recover from last night; too much beer, too much wine, too much scotch, too much food. We are doing this for fun, right?

Right now we are inside a warm cabin. The windows are tiny, covered in condensation from three grown men breathing, from coffee boiling and breakfast cooking. The hatch cover is open slightly, letting in cool air and giving us a slit view of a grey, downtrodden sky. The sun is out there somewhere; I know this because of natural laws and personal experience. Yet today all it does is push away the black and tint it to a gun metal gray.

I am beginning to wonder what I will do once I quit work. I think this whole process is backwards. I should quit work while I am able, do the things I want to do, live what life I still can. Then, once my abilities diminish, I should go back to work. The problem is that I won't have a lot of ability by then. I will likely be wheelchair bound, although I am pretty much in that state already. I will likely be unable to talk or even use a keyboard.

As to what I will do once I quit work, this is an interesting challenge. I will likely be able to travel for a while, but will I want to travel full time? I doubt it. More likely I will want to travel a bit, then come home, then travel a bit, and so on. Road trips entice me, since I can do those without airports and stuff. On the other hand I think I would like to go to the north of Italy once more before I die. It's not a show-stopper, just a thing I think about.

When I am not traveling, I think I might volunteer with the ALS society and perhaps see if I can do a bit of public speaking, as long as I can talk. I am a natural organizer, a doer of things. That, along with my experience in speaking, teaching and training, might be useful. I like the idea of being useful for as long as I can.

Or maybe I can just spend time on my boat.

Saturday, 23 February 2013

I'm Living A Lucky Life

It's morning on board. Mr. Smith is cooking bacon, eggs and mushrooms. Mr. Gordon is fussing over wind and weather, setting up sails and lines. My coffee is steaming on the table next to me while I enjoy the sounds and smells of a morning with clear skies and strong winds. My back hurts from sleeping on a narrow berth. My knee hurts from where I tore the ligaments last December. My hip hurts where they carved out the bone graft chunks to put in my wrist 30 years ago.

Out the hatchway I can see the green of cedar and fir clinging to the cliffs that line the banks of the sea. The blue tinged smoke of the ferry rises, hanging on to the rock face and dissipating as it climbs, spidering its way up into the edges and cracks. A train rolls along the track, hidden by the screen of trees. I see the track path traced by power lines and poles peeking about the verdant edge.

Last night we behaved, mostly. We had a beer at a local pub. We ate seafood at a local restaurant. We had more beers, then came back to the boat for a nice glass of scotch. My aunt Margaret gave me a gift yesterday and said "Buy a nice bottle of scotch." I did, plus a couple of nice bottles of Malbec. We enjoyed a bit of the scotch last night, and likely will again this evening. Dinner will be on board today, curry made by Mr. Smith, boat provided by Mr. Gordon and wine courtesy of Aunt Margaret.

Life is good.

There will not be many of these days, days of freedom, careless days of going where the wind takes me and doing as I please. How many? None of really knows the number of our days. That is what makes each of them special, precious, too important to spend a moment in unhappiness. Every day spent in distress is a day wasted.

I am lucky, very lucky. When I work, I get to spend my time doing interesting, exciting and fun stuff. When I play, I get to do interesting, exciting and fun stuff. I have amazing, wonderful friends who do so much to make sure I can still be a part of this life. For today, I plan on living this lucky life.

Friday, 22 February 2013

Winter Sailing

I am in Vancouver this morning, visiting at my Mom's place. Later today I will head out for a weekend of sailing, and general misbehaviour, with my two friends Chris and Chris. This is something we do every year, and have done for about the last decade.

Winter sailing, that is what we call it. Or at least that is what I call it. We three, and sometimes if my brother Peter comes along, we four, gather together at Chris' boat. We spend Friday evening in Horseshoe Bay, eating and drinking our way up and down the street that fronts against the aforementioned bay. We spend our evening telling bad stories and jokes, eating things not on our diet, and generally getting into middle-aged man mischief.

The next morning, struggling against hangover and ice cold dampness, we arise. In some cases, if we are very lucky, the wiser Chris who drinks far less than the foolish amongst us, will arise ever so slightly earlier than we and will begin an English fry-up breakfast in the galley. Then, with coffee splashed into oversize mugs, doused healthily with milk and suger, we clamber about the central table, folded up into place, and devour what Chris hath wrought.

Breakfast takes some time, usually enough time that by the time we are done we need to go to Starbucks. You might think we go to Starbucks for the coffee; you would be incorrect. I personally head to Starbucks for their washroom; it's large, it has running water, it has a flush toilet. It's even heated! This year may be a challenge. Although the Starbucks certainly has wheelchair access and handicap handles, it is up a steep ramp from the dock and that may take all three of us to handle.

Once breakfast is done, the arguing begins, usually en route to Starbucks. Where will we go? Most years we go to Gibsons. There are a couple of reasons for this. First, Gibsons is only a couple of hours away with reliable winds and generally easy water. Sometimes Howe Sound surprises us, but mostly it is predictable.

Secondly, Gibsons has an excellent marina, one with a heated bathroom and showers. It's easy to get into and out of, with a ramp that is somewhat less steep than the slopes of Mount Everest.  And of course there is Grandma's Pub. The only problem this year is that Grandma's is down three flights of stairs with no elevator. The two Chris's might have their work cut out if we decide to go their this year.

So we might do something different this year. The wonderful thing about all of this is that there is no requirement to do anything at all. It's not like the ocean, wind and weather are going away.

Thursday, 21 February 2013

It's Time To Hit The Road

It's another sunny day. The sky is clear and the air is crisp. The junkos are jumping about in the limbs of the tree that grows directly in front of my living room window. I am on the third floor and I can almost see the top of the tree. There are dozens of pine cones and these birds drop by on a daily basis. It is a good start to the day.

I made a decision about work. I am going to "retire" soon. It's not that I no longer love my work. I do. It's not that my work is not rewarding; it is the most rewarding work I have ever done. I work in a great place with wonderfully supportive people. I get to do amazing things in my work and I am respected. I am not leaving because I am unhappy.

A diagnosis of ALS kind of puts some pressure on a few things. I have a limited shelf life. While most of my bucket list items are checked off, there are some things I would like to do while I still can. I want to do some road trips, to drive a few highways I have not yet traveled, to see a few places yet unknown. Over the last few weeks these have bubbled higher in my conscience. They have moved from ideas to urgencies.

Travel is big on my mind these days. It might be that I am just running away, escaping from the reality of my existence here in Calgary. It might be that the exploring spirit which has always been part of me is now rearing its head and demanding attention. It doesn't really matter. I have decided I want to hit the road.

I cannot go immediately. Regardless of where I am in my life, I have responsibilities. ALS does not give me a free pass. There are things I feel I need to have in place before I wander off. There are things at work that are important to me, things I want to get done. I need to clear up some personal issues and financial things before I head out. I have a few tasks to do. I won't leave tomorrow, but soon.

Then, I am going south for a while. How far? I don't really know. I had a timeline once, when I thought I would do a road trip and then come back to work. Now I am not so sure. Now, perhaps for the first time in my life, I am free to go where I want to go and do what I want to do with no return constraint.

Or perhaps I have always been that way but was too busy to notice.

Wednesday, 20 February 2013

I'm Still Here

Someone told me yesterday that my blog entries had been a bit of a downer lately.I am certain the concern was that my spirits were low and that my sadness was showing more and more. The truth is that as this disease steals my body it has been stealing my spirit too. Yesterday I wondered about "running out of gas". That is probably the best metaphor I have; my tank is running lower and lower.

I think about suicide a lot these days. No, not for today, but for some future day. I think about the futility of going through all of this, only to die at the end; the pointlessness of it all. My fellow Christians will tell me to turn to God, to put my faith in His plan for me. Right now I am not really impressed with His planning. Over the years I have continually struggled with my faith. As a pastor at church once said to me, "some people come to God easily, others have to work at it". What happens when you are too tired to work at it?

I know this is terribly self-centered of me; it is self-pity, selfish in the extreme. My son tells me I should look at what I have, not what I don't have. I wonder how he would view life if he had ALS, when every day something you had yesterday is taken from you? I wonder if anyone out there can imagine the hopelessness of this disease; no known cause, no known cure and an almost certain timeline. Today I stumbled in the washroom. I didn't fall, just got wobbly. It was enough to remind me that soon, very soon, I won't be able to stand at all.

I know I should look around me and take joy in what I have, in my family and friends, in my life. It's not that easy. Each day I find myself struggling to remind myself that life is worth living. There is no doubt in my mind that I am struggling with depression; it's my least attractive quality these days. This is a hard disease. I will be glad when it is done with me.

Yet, I suppose, there are things in my life to enjoy. There are things I like to do, places I would like to see, people I would like to be with. It is time for me to make a change, to do something that gives me a different focus.

Wanderlust. I have always loved to go from place to place, to see new things, to explore and imagine what might be next on the road. Even small bits of travel have continually entertained me. It is probably time for me to leave Calgary and hit the road. I need the distraction.

I want to see my grandchildren, to experience their simple laughter, their joy in discovery. I may never get to take them on their first fishing trip, but I can certainly buy them their first fishing rod. I may never get to see them head off to school, but I can certainly buy them crayons and books and pencils and pens. I may not see their future but I can see their today.

Perhaps my bucket list still has some things in it. I'm not ready to go just yet.

Tuesday, 19 February 2013

Running On Empty

Well, it's happening. I woke up this morning and thought to myself "I really don't want to go to work today". This has happened before in my life. It's happened to all of us. So perhaps it really doesn't mean anything. Perhaps nothing really is happening. Perhaps I am having a Monday morning feeling like everyone else in Alberta. It was a holiday here yesterday.

I think what makes this different for me is that I don't have to work. Up until now I have felt like I had to work. Up until now I have felt that going to work was one of the more important "self-identifiers" I had. My work is fulfilling and meaningful. I derive substantial emotional fulfillment from what I do and how it impacts the lives of 105,000 students and 13,000 staff members every day. In some ways may be considered a distraction that draws my attention away from ALS.

 So why don't I feel like going to work today? I think there are a couple of factors at work here. First of all, I can no longer drive without hand controls. This means I have to ask my son to drive me to work. The hand controls will go in my truck in a few days but for now I am dependent on him for my mobility. This is distressing. It distracts me, makes me look at "going to work" instead of "working".

The second factor may be just my usual start of the day slump. I am a slow starter, struggling to get up and go. There is an old poem that Pete Seeger put to music where the chorus goes "How do I know my youth is all spent? My 'get up and go' has 'got up and went'. That's how I feel most mornings. This is normal for me. So perhaps I am just having another rough start.

It didn't help that I read a book last night. I read John Grisham's "Playing for Pizza", a cute little story about an NFL star from the US playing in the Italian NFL. I like his writing style. It's brisk and economical, moving along at a good clip and not too strenuous. His books are mostly based on some level of fact and in most cases they tell multiple stories in the course of the main story. I read until half past midnight, so I am starting slow.

Perhaps it would be wise for me to not decide to quit work today. Perhaps I should wait for a few days, until at least I get the hand controls in my truck and a good night's sleep. But someday, in the near future, I am going to run out of gas. Someday, in the near future, I will finish my projects at work and think to myself "Why bother?"

Someday, in the near future, I will run out of gas.

Monday, 18 February 2013

It's Not Where, It's How

It's a travel day today. I am in Vernon. This must be BC since the sky is cloudy and overcast. The sun is hidden and the world has that sense of gray that can only come from the threat of rain. The temperature is -3 C; that means the possibility of snow. It is a dreary day, not much of an advertisement for the beauty of the Okanagan Valley here in south, central BC.

I've been thinking a lot about how my life will end as I make this road trip. It's not so much how it will end, but where. I am doing a lot of thinking about where I will go, where I will live, and how I will live. It's something I have said for many years; it's not really important where I live, it's how I live.

I love the ocean and miss it desperately. I miss the freedom and joy of being on it, the serenity of gazing over it and the life it raises ever before me. Yet the ocean will take me away from what are arguably the best services in the country for ALS, those to be had here in Calgary. If I go to BC, I will be closer to my family, closer to my Mother, my children and my grandchildren. If I leave Calgary I will be leaving my friends, the people who have been close to me throughout the last few months, the people who have supported me and cared for me, helped me and been kind to me.

I'm also thinking about travel. I am really looking forward to a road trip at the end of March. I love the journey, the trip from here to there, whether by land or sea. I want to continue to explore. The problem is that, once again, I am solo in this effort. I cannot ask my son to give up even more of his life to wander around the continent in my truck. He needs to work, he needs to own his life and to live it.

I can still travel alone and it will be better once I get the hand controls in my truck. But I come back to a variation on my earlier theme; I don't care where I go, I care how I go. It would be so nice to have someone who could be on the journey with me. One thought I had was to post an ad on Craigslist looking for a travel companion. At the end though, I want to go.

Maybe I should just drive south as far as possible, getting the ferry past the Darein Gap in Panama, heading for Punta Arenas. Maybe I should combine my love of travel and my love of the sea, and find someone to take me out to sea in the great Southern Ocean. Maybe I should finish there.

But then someone would have to come and get my truck.

Sunday, 17 February 2013

Living Space

My son was out with me yesterday doing some errands. He is getting frustrated at spending all his time hanging around me. It comes out at times, just as my frustrations with him come out sometimes. He and I are very different people with very different ways; it's not always a good thing.

We were talking about his frustration and he said it might be better if he got his own place to live, a place nearby where he could come over rather than be in a space that wasn't his own. Then, under his breath, he said lightly "if that is still possible". I asked him what he meant, and he said "I see you having more and more difficulty each day".

It's true. My struggle to get up and down from my chair, in and out of my truck, to and fro in the kitchen; all these get tougher each day. It is tough enough that some days I consider not getting out of my wheelchair when I get home from work. It is tough enough that there are a good many days when I don't feel like cooking or doing anything other than watching TV and having a glass of wine.

WAIT! That sounds almost normal. I know all kinds of people in my age group who come home from work tired out, looking forward to just taking it easy. Lots of my friends tell me they don't cook all that much because after a long day of work they just don't feel like it.

So what is the difference for me? I suppose it's just one of degree. When I am tired it affects more than just my energy level. It affects my physical level and my emotional level. Tired for me is more than a feeling, it is a deeply binding state that moves to exhaustion for almost any activity more than sitting. It's harder. Then again, I am not the only one with problems.

I correspond with a few people these days. One of them is a woman with MS. She is in a wheelchair and recently said to me that ALS was like MS on speed. She was saying we could compare notes but my hard luck story would always win. I smiled at that point of view. It's true, but it's not a contest I would wish for anyone to win.

So back to my son. He is having a rough ride of this too. Maybe he needs to get his own place regardless. It might be time for me to look into some sort of assisted living facility.

Saturday, 16 February 2013

Feeling Good

I am feeling better today, almost good enough to say I am feeling good. It's interesting how some days I can feel like I am improving, knowing full well that this is not the case. What I think happens is that there are days when I feel less challenged by things, days when I feel like I can handle it better. Today is one of those days.

What causes these "good days" and "bad days"? I am pretty sure I know what it is. It's the same thing that affects other people, the same thing that makes each of you have those same good days and bad days. It's rest, diet, and taking care of myself.

Yesterday I did all the right things. I got a good night's sleep; I slept in in the morning. I took it easy during day; all I did was go to a movie, get a haircut and do a bit of grocery shopping. I ate properly yesterday; I had a light breakfast and a sushi lunch. I wasn't hungry at all at dinner time so I ate very little. Then, after watching the Canucks lose a hockey game, I went to bed and got another good night's sleep.

So I guess the things that make me feel good are pretty normal. Eating well, looking after myself, getting plenty of rest, not pushing it; these are the things that help. The tie between the emotional side and the physical side becomes more evident too. Feeling better physically helps me feel better about myself, my life and my condition.

What makes this so tough is me. I am used to going until I drop, then going again the next day. I am used to having lots of energy and strength. I am used to using my body like a machine and having that machine self-repair overnight. For my whole life my body has just plain worked. When I would break it, it would fix itself. When it was tired, I could always count on my body to push a bit farther, work a bit harder. My body just kept going.

These days I think of myself as an Energizer Bunny with small batteries. I can still go, but now I need to stop more often. My spirit works like always; it's just the physical engine that refuses to cooperate. I need more sleep, I have to "behave" and watch my drinking and diet. I can't depend on the machine anymore; I have to go easier on it.

So much for eating and drinking whatever I want. That experiment has ended. Too bad.

Friday, 15 February 2013

Thinking About Things

I have a four day weekend this week. No work for Friday and Monday is a holiday here in Alberta. That means for four days I get to sit around and do nothing. That might seem like a good thing to you but for me it is anything but. I need to keep busy; it distracts me from my condition. I like to feel productive and there is not much for me to be productive at while sitting at home thinking about things.

There are things to think about, not all of them good things. For example I have pretty much lost the ability to do any steps at all unless they are shallow. I cannot lift my feet more than a couple of inches of the ground. When I go to trivia, for example, someone has to help me get my feet up the two steps into the room. I can get down those steps just fine, but I'll be damned if my feet will lift that last half inch for the step. What's worse is there is no handrail so the whole operation is problematic.

On the other hand, it is amazing and wonderful to me that my friends will help me lift my feet up those steps, along with helping ensure I get in and out of the elevator as well us up and down from the seats. These are the kindnesses that make a life with some modicum of normalcy possible. It continually surprises me when I feel the care and concern they express, while at the same time the respect for me as a person that they show. They seem to have found a surprising ability to balance care and compassion with my need to feel capable and competent.

Driving is another thing I have to think more about these days. I need hand controls now so I am having them installed with the lift seat and wheelchair crane. All in all my truck will be well configured to keep me going for a while yet. Nonetheless there will be limits on what I can do and I have no doubt that my insurance will be more expensive. There too I need to balance my need for care with my need to feel capable.

Since I can drive, I am planning a road trip for the Spring Break. My son and I are going to drive from Calgary to Monument Valley, then over to Las Vegas via the Grand Canyon and then back home. With the truck properly rigged I will be able to do more than my share of the driving. This is a good thing and I am enjoying the planning.

There's lots more to think about, the daily humdrum of life is no different for me than it is for most, except for this minor health issue. I try not to think about that.

Thursday, 14 February 2013


A couple of people have suggested to me lately that I should consider my own wants and needs more than anything else these days, that I should become a bit selfish. Their sense of things is that, given the short time I have left in my life, I should seek to fulfill myself first and not worry too much about the needs of others, that I should look to what I want first and worry about the rest after that.

It's not really in my nature to do this. Oddly enough I find myself still driven by my basic sense of responsibility to the people around me. I am still concerned about the impact I have on others. It's not perfect, but it is definitely still there. Perhaps what they are saying to me is that I need to focus on myself and what will make me happy for the rest of my life. What I think they are saying is that I should consider myself first.

Some would contend I have already done that in leaving my marriage and setting myself up here in Calgary. Some would contend that I am only thinking of myself in some of my financial actions lately, such as spending thousands of dollars on modifications to my truck just so I can drive for another year or perhaps even less. Some would contend that spending all my capital, and leaving none for my children, is selfish. They would be right, I am thinking of myself.

On the other hand, given that I have less than 36 months of life expectancy, perhaps I should focus on the things that make those months really worthwhile. Perhaps I should focus on distracting myself from a bleak future and enabling myself to focus on one good day at a time. Even one day of continued freedom and independence is worth all that I might spend on modifying my truck. The future is for those who plan to live in it; all I have is the present.

As of now I am going to try to stop feeling badly about spending on something simply because I want it. As of now I am going to do my best to do what I want to do without feeling like I need someone else to approve, without feeling like I am I doing something bad by doing something for myself. A lifetime of habit will be hard to break.

Maybe this is a good time to get selfish in my life after all. Now if I could only figure out what I really want to do. Mostly what I want to do is go to work, do my job, live my life, enjoy my friends, and be happy. I want to continue to be a good father and perhaps even a good grandfather if time and circumstance permits. I enjoy doing for others, giving to others, helping others.

I want to be a person others will respect, love, and like. If that's selfish, paint me that.

Wednesday, 13 February 2013

The Most Important Thing

My daughter suggests I write about the things that were most important to me in my 20's, 30's, 40's and 50's. The funny thing is that I can't remember anything in terms of possessions or activities or anything like that from any of those given decades that seemed "most important". From where I sit right now the thing that was most important to me through all that time was one thing, the thing I remember most of all, the thing that brought me my greatest joys, drove my most important decisions and made me face my greatest difficulties.

The thing that was most important then, and is still the most important thing in my life now, is, and will always be, my children. The thing that was most important then, and is still the most important thing in my life now, is being a Dad.

I will not claim to have been a particularly good Dad. In fact in most cases I would say I was mediocre at best and sometimes just downright bad at it. Nonetheless my role as a father was and remains my single most common self-identification mark. When I look back in the rear-view mirror of my life, the one thing that looms largest in my hindsight is just being a Dad.

This role just seems natural to me. It seems to come to me in ways that work well sometimes and don't others. Yet I perpetually think of myself in that extension, in that mode, the mode of Dad. Note that I don't use the word "father" as much. Really I am just a Dad. I was a Dad to every young person who came into our home, not that I tried it intentionally. it just happened that way. I was not a father to them, but a Dad. I was Mary's Dad, Meaghan's Dad, Katie's Dad, Ricky's Dad. I still am.

Think of where I am now. When I needed help the most, I turned to my family and to my children. When I miss my old life the most I think of my kids, of their friends and of the stuff we did together. When you ask me to talk about my life, my children and my experiences with them are what immediately springs to mind. I remember the laughter, the fun, the travel, the adventure and all the time spent together. I remember the songs we would sing and the stories we could tell. I remember the questions and complete disregard for answers.

I will miss being a grandfather. I know, I already am. My grandchildren as small and live far away. After I am gone they won't have the memories that my own children have of me. They won't know the silly songs and bad imitations. They won't remember going fishing or camping or being out on the boat. I will be as foreign to them as an ancient historical figure. I will be intangible.

My grandchildren will have other grandfathers. I won't be there. That makes me sad.

Tuesday, 12 February 2013

My Goal

On Saturday I went to my first ALS Support Group. It was not easy. The people in the group ranged from newly diagnosed with limited symptoms to people at the end stage of this awful disease. There were those who would talk, those with limited speech, and those with no speech at all. There were those who could walk, those like me with a cane or wheelchair, and those who were unable to move at all.

At first I was frightened, facing the fear of what was to be, facing the reality of the outcome of my condition. Then as people began to interact I was able more and more to see the humanity behind the disease. I saw unspeaking faces with eyes lit up in excitement and humour. I began to hear mumbling voices make jokes and tell stories. I began to find myself leaving the fear behind and discovering commonality and comparison.

My current state is in the midst of this group. There are those much worse off and those much better off. Once again I am average, in the middle. The average duration around the table was about three years. Add the year or so that each of us experienced before diagnosis and it would appear I am about a year behind the average member of the group, assuming you can say anything is average about an ALS patient.

One thing I discovered is that the ALS Society in Alberta is a leader across the country in supporting ALS patients and in raising money for ALS research. As on person put it, "If you are going to get ALS, Calgary is the place to get it." I've experienced this myself; the support I have received both from the ALS Society of Alberta and from the medical team here in Calgary has been terrific.

This did not happen by accident, nor was it based on government funding. The success here in Alberta is completely based on the work of a dedicated team, raising money and raising awareness. This group raises money on a constant basis, as do all volunteer societies like this one. Their main fundraiser every year is Betty's Run for ALS. It is a 5 KM walk/run like the Terry Fox Run only on a much smaller scale.

The 2012 Betty's Run for ALS raised over $504,700 for ALS research and for supporting ALS victims. Since its inception, Bettys Run for ALS has raised $5 million for ALS awareness, patient services, equipment and for research to find a cause and cure for this terrible disease. The Alberta ALS Society are the folks who have stepped in to help me with my wheelchair and my power wheelchair. These are the folks who are helping me and others who suffer from this disease. Now it is my turn to help them.

This year my goal is to raise $50,000 to support Betty's Run for ALS. Rest assured I will be asking for your help, either directly or indirectly. I may not live to see a cure but I sure want to help the next person sitting in a hospital room contemplating this terrible diagnosis.

That is my goal. At least until June 10, 2013.

Monday, 11 February 2013

Legless in Calgary

There has been another change. This one has been coming for a while. I have felt it creeping up on me, stealthily clawing bits and pieces of me, weakening me little by little. For the last few weeks I have noticed increasing difficulty getting from my apartment and into my truck. It wasn't harder on any particular day and some days were better than others. Little by little, however, it was getting more difficult.

Yesterday that difficulty jumped out at me with a surprise. I can walk to my truck using my cane. When I got there on Sunday morning, I couldn't lift my right leg on to the running board to hoist myself in. The challenge was not a failure in my right leg but the failure of my left leg to hold in place even though my knee was locked. It happened on Saturday too; at that time my knee buckled but my death grip on the steering wheel stopped me from falling. Sunday was a different story. I knew it would fail.

I managed to struggle into the truck with some extra effort and a once again firm grip on the steering wheel as a lifting source. Once in I was exhausted and had to sit for a few moments to recover. Later in the day I was completely unable to get my right leg up onto the running board. One of my friends had to come and lift up my leg so I could do the rest.

This loss of stability reflects the growing paralysis in my leg muscles. Most people think of paralysis as having your muscles freeze, not being able to move them. Well in fact that is my very problem. My muscles aren't frozen in place; I just cannot move them anymore. I can't trust them. They don't work. They fail me. This is what will ultimately happen to all of my voluntary muscles.

This change means I must change my truck to keep it, and I do want to keep it. In order to continue using my truck I will need to add a lift-and-swivel seat, hand controls and a wheelchair lift. This will likely cost in the order of $7,000 - $10,000. As the manual says, ALS is an expensive disease. I am not sure where I will get the money from but I will make this happen somehow.

You might ask why I keep this truck. Why not get something else? Why not get a van or something that is easier to get into? There are a couple of things in play with this. First of all, getting in is only half the equation. You have to get out too. A lower vehicle that is easy to get into is a tougher vehicle to get out of. The balance would be a vehicle about three inches lower than my truck, or a way to get me three inches higher. Regardless of all that, at some point I will need mechanical assistance to get in and out of a vehicle.

Then there is the problem of the seat inset. Vehicle seats are set in. To get into a car seat, I must fall backwards into the seat. Even a seat at the correct height for easy in and out requires that I fall back into it. This means I need another SUV or something like that, an equally costly vehicle. Or I need to give up now and get a van with a wheelchair ramp and forget about driving. In other words I must give up my independence.

The other problem is that losing my truck is another loss in my life. I like my truck. It is the truck I have always wanted. I ordered it with all the stuff I want, the way I want. I would like to keep it as long as I can. I am losing enough already; I want to do all I can to keep my truck. It is my freedom, my mobility, my escape.

So I am not spending money on a truck. I am spending it on living my life as fully and completely as possible. I am spending to save my life, or what there is left of it.

Sunday, 10 February 2013

Five Things I Love About You

This post is about a woman, a woman who shall remain unnamed, a woman who may or may not exist. Regardless of who it is, I wanted to share the five things I love about this woman. It's also a look at what I love in a life mate, the kind of person who I would look to spend the rest of my life with, no matter how long or how short. Does she exist? Perhaps, perhaps not. But a man can dream, can't he?

I love it when you laugh. Having the ability to laugh is essential, whether you are laughing at something funny or laughing at yourself. You laugh but your humour is never at someone else's expense. You laugh because you realize that seeing the humorous side of life is so much better than seeing everything as serious. Laughter is contagious; your laughter makes me laugh. When you laugh my heart becomes light and my day is better.

I love your compassion. While caring is the physical act, compassion is the emotional act. You see the pain and difficulty that I have with things. You see the trouble others have in their life. And you respond with emotion and compassion. You feel, and you respond to those feelings. You sense things with your spirit and soul and you carry them in your heart. All this you do, and then you do it some more.

I love your way of caring. Caring is the act of kindness, the action part of compassion. When you get me a cup of tea or make me a sandwich, when you help me up the stairs or make sure I have chair when I come in the door; these are the acts that show me you care for me.This physical process of caring, where you help others, is one of your best qualities. You see, I know that while you care for me you are caring for others in your life too. You are a care giver and that is one of the kindest things you do.

I love your enthusiasm for living. So many people go through live filled with anxiousness, forgetting to enjoy the moment. When I see you attack life, when I see you charge into things, grab hold of things, make things happen, when I see you live life with enthusiasm it reminds me to do the same. It reminds me to give myself up into being alive, to stop worrying about the pointless and start living with purpose.

I love that you defend me. I often feel alone, defenseless. There are so many situations where I feel like nobody has my back. I am flying solo. When you take up my cause, when you stand up for me and help me to stand up for myself, I feel empowered. When you help me fight my battles and when you help me understand when to charge, when to retreat and when to stand pat, all of these things make my life better.

I love that you are different. Oops. This is number six. I guess that is just the thing about you. Six is five. You are different. Regular doesn't count. Ordinary doesn't count. Expected is unexpected and unexpected is you. Different is more that one dimension; different is daily, in action. Different is... different.

Saturday, 9 February 2013

No Pictures

You may have noticed that I don't put pictures in my blog. I know other people do. My Mom's blog is filled with pictures. I have lots of pictures and charts and graphs that I could put in my blog. I don't; I don't for a very good reason.

This blog is about my mind, about what I think and feel. It's about the thoughts that worm their way in and through, wiggling out into words that slide from the keyboard to this electronic page. This blog is about expression, feeling, fear, doubt, anger, pain and joy. This blog is a way for me to share with you the things that drive me forward, and the things that hold me back. This blog has no pictures.

That doesn't mean I have no pictures. I do. My preference is to draw those pictures with words, to allow my words to create in your mind a view of life from behind these stained and scratched glasses perched upon my nose. My preference is to leave an uncluttered image, free from the confusion of misaligned objects or distractions in composition.

The image you create your mind is the most powerful image you will ever see. Our furthest ancestors, those who lived in caves and scrabbled for existence, these people painted pictures on walls. They had no words. We have such a limited history and knowledge of them because they simply had no method beyond pictures in which to describe the nature of their existence.

The first great societies wrote. They may have used an indecipherable script or code. They may have written on clay tablets. Their language may have been limited when written. But they soon discovered that the written record had power, that words derived their greatest strength when captured fixedly on durable media.

One of the things that worries me about all of our electronic age communications is the lack of durability of this new media. What happens when there is no electricity? Will this data last for 10,000 years as has the writing of of the ancient Mesopotamian and Egyptian? Given the ease with which we destroy electronic data, given its lack of durability and lack of portability, will it truly last?

Or will it become, as much of history has become, a temporary repository, passing in time? I am impermanent. This blog, no matter what we all want to say, is impermanent. Each of us, but for a rare few from each generation, is simply a particle in the sea of humanity washing over the shores of time.

Maybe I will be the lucky one. Maybe my words will not pass away as I shall pass away. Maybe I will be remembered. Maybe I should put a picture in here so people will know what I looked like. Maybe not.

Friday, 8 February 2013

What Is It?

My upper arms are tired this morning. So are my wrists and hands. My fingers ache. They feel like they don't really want to type anything. My shoulders are sore too, especially near my neck. So what is this? Is this ALS or is this just one of those days? Am I simply stiff because I am stiff, or is it something more sinister?

That's the trouble with where I am at these days. I simply cannot tell what is really happening to me. The way this works is that I go along, thinking things are going along, then there is an event. Something happens where I notice a new level of loss, something happens where I realize I have changed.

Having trouble at the keyboard, having sore arms, having achy fingers; these are things that happen to everyone. Sometimes it's a change in the weather; it certainly happened to me when I was on the coast of BC. Sometimes it's simply a bad night's sleep, although I think I slept fairly well last night. Sometimes it's just the aging process; I am certainly a candidate for that. But sometimes, and sometimes more than others for me lately, it is ALS.

I can still pick up my coffee cup. It just seems to be a bit heavier this morning. I can still type, and I type faster than most people I know. I just feel it more. Not a lot more, just more. I just feel a bit weaker. Things feel harder to do, but only the teeniest bit.

Getting dressed was a tiny bit harder this morning. Or was it? You see, these changes are small enough, and normal enough as we age, that they are easy to see as something else. ALS is called the "great imitator". The reason most people, me included, take so long in getting diagnosed is that we think it is something else. Perhaps it is a sore back, or perhaps it is just getting older, or maybe I pinched a nerve, or maybe it's arthritis or some other age related condition.

The rate of progression is slow. You don't see it until an "event". You don't see it until it hits you hard, with something that pushes you to see that there really is a change, an unusual change. When the event happens, when the change is real, you still can't see it easily. You still hope it is something else. You still want to pretend.

So what is it this morning?

Thursday, 7 February 2013

First Thing, Last Thing

My daughter Katie's prompt card suggests I write about the first thing I think about in the day, and the last thing I think about in the day. It's not what you think. You see, other than this one small health issue I am pretty much like every other 57 year old man on the planet. When I wake up in the morning, the first thing I think about is going pee.

Then I begin to think about what what I need to do to get to the bathroom, working myself up and out of bed, looking for my cane and glasses, wobbling my way down the hall worrying that I don't fall, and then relief. So I guess the second thing I think about each day is ALS.

Most of my day is pretty normal. I get up, I get dressed, I have my coffee, I do my blog, I go to work, I come home after work and have dinner, I read, I sleep. Each  day there is a variation. For example last night Tonny and Brad came over and helped me transfer some wine from the primary fermenter into a carboy for clarifying. This process, by the way, is called racking off the wine. They stayed for a bit and we drank some wine and talked about guy stuff - women, food, work, and oh yes, women.

I have the same trials and tribulations as everyone else, plus a few of mine that are a bit extra. For example I got home yesterday to find two letters in my mailbox. One was a photo radar ticket from the Calgary Police Service. Apparently my truck still likes to speed even though I try very hard to keep it from acting so enthusiastically when it sees an open stretch of road. I am not unhappy. I was speeding, and that means I can still drive, something that will change in the next year.

The next envelope was a letter from the Family Maintenance Enforcement Plan. Apparently having a terminal illness does not mean my ex-wife will forgive me her spousal support payments. You see I recently decided that I will need my money to pay my health care costs rather than paying so she can stay home and not work. I find it sad that I am rapidly losing my abilities to work and live and yet the only emails or letters or communications from my ex are demands for money. Never a word of sympathy, never a word of care. Simply demands for money. She has a court order and she has a legal right to enforce it. I am told this is normal in divorce, to be expected in life.

Like the rest of you I have money challenges, only mine are a bit different. For example yesterday I got the quote for my new wheelchair. The government will pay a given amount for a wheelchair for an ALS patient. I pay 25% up to $500 and a basic wheelchair costs about $2,000. Since they don't expect me to live long, the government says all I need is a basic, heavy, clunky wheelchair.

Those of you who know me know I move about fairly quickly even in that monstrosity. I want a chair more suited to my lifestyle and enthusiasm. I need a strong yet lighter weight chair, one that is easy to get in and out of my truck, one that is easier to handle on the streets and sidewalks of Calgary, one that I can get onto the sailboat. The chair I want will cost about $5,000. I have asked for funding from the government; I don't expect to get it. With a short lifespan I am a bad investment. As has ever been the case, I will pay.

So I think about all these things in my day. Most of them are the same cares that the rest of you have, some of them are different. Most of them are tinged with my reality, yet most of them are mundane. I go through my day dealing with life as it comes. I get up, I go through my day, then I sleep. Routine.

At the end of the day I push myself into bed. I move about clumsily as my legs don't help me much. I adjust my covers as best I can, trying to use my right foot, with its limited strength, to lift the covers off of my left foot, which is pretty much done. I adjust, I turn, I fidget.

Then, as I drift off to sleep, the last thing I think about is, well, you know. Oh, and ALS too.

Wednesday, 6 February 2013


I am tired. What do you do when the least little thing tires you out? What do I do when the mere act of putting on shoes, or socks, or pants is enough to cause you to need to stop and rest. The blithe answer is simply to stop and rest. I wish is was that simple.

As I write this blog, an advance effort I might add, I have a load of laundry in the washing machine. It took all my efforts to get the laundry collected and down to the machine. Next comes a load of linens. My problem is that I need help with this but I am loathe to ask my son for help. He is busy doing his own thing. He wants to "do it later". Then I have to ask him again and he gets annoyed, mostly with himself.

Don't misunderstand. I am deeply appreciative of my son's help. He has given up his life to come to Calgary and care for me. He left friends, family, work and a whole community behind. I am dependent on him now, or at least partly so. Nonetheless I must still ask for his help.

Even the act of asking for help is exhausting. I have to ask, which means I can't get things done on my schedule, something I have always been able to do. I am forced to wait, and be patient, and accept the reality that I may have to live with mess, or dirty laundry, or a full dishwasher simply because I am unable to do the task without exhausting myself. Who do I call? How do I ask for help when I feel diminished by the very act of doing so?

It must be hard to be a caregiver to someone like me, someone who expects things to be done on my schedule and when I want them done. I has to be frustrating for someone like my son, who has his own life and his own schedule, to put that aside based on the demands on a failing invalid. I can appreciate his challenges. I can't expect him to read my mind yet I want him to anticipate some of this so I don't have to ask. I want to be a little less dependent and a little less tired.

Let's face it; none of us is really good at walking a mile in the other guy's shoes. We, as human creatures, are all self-centered. It's a basic survival skill. We all think of things from our own point of view first, even those who proclaim otherwise. This is simple human nature and it's why religions throughout history have lectured and directed and instructed us in the art of putting this basic state aside. It's hard work to do.

Depending on others is exhausting. Doing stuff myself is exhausting. Dealing with my own needs is exhausting; understanding the needs of others is equally so. I suspect that this whole process is what wears out those afflicted with ALS. Then, with all this exhaustion, I need to find the strength to carry on, to uphold and uplift those around me, to make them feel not so bad about this dreaded disease.

I just got up and already I'm tired. I need a nap.

Tuesday, 5 February 2013

The Calm After The Storm

I am feeling better today, slowly rising up from the depths of fear and despair. This is not bi-polar, not dramatic, not pillar to post. This is the steady effort of focusing on the now, on the present, and working to realize that much can happen before the end of my life.

My life is an ocean, a persistent sea that rises and falls with the storms of emotion that pass through it. I can feel the pressure rise as the storm reaches me. I can feel the tension mount, the crackle of lightening in the distance. As the clouds of fear fly towards me, bursting upon me, the waves of emotion rise up and batter all about me.

I am not a ship upon that sea; I am that sea. I can be calm on the surface yet filled with turbulence below. I can be full of life yet as dead as stone. I am rich beyond compare yet poor as a starfish. I am crowded yet alone. I know that the nature of my being, my persistence, will take me to places I never expected to go.

My tide is ebbing, flowing ever outward exposing the ever distancing shore of my existence. I am bounded by forces beyond my control, shaped by events that I cannot change. All I can do is press on, shifting endlessly, meeting the winds and shoals, moving.

These storms that pass in and out of my life are the things that shape my surface. Deep down, beneath the waves, is me. I am deeper, richer and stronger than the buffeting waves on top. These storms pass, leaving behind a shaken surface. These emotional waves cresting atop my soul will pass over me. When they are done, when the storm is over, I am calm, steady, safe and secure my own spirit.

Today I got up. Today I went to work. Today I persisted. Tonight I will sleep. Tomorrow I will awaken again. While the winds and storms of time and tide buffet me all around, I will simply be. I will persist. I will persist until I can persist no more. And then I will return from the rock of land that we call life. My spirit will flow into the seas again.

Today, for today, I will let this calm be part of me. I will not be afraid.

Monday, 4 February 2013

I'm Frightened

Last night was rough. I had trouble getting to sleep and then I awoke at 4:39 AM filled with worry and dread. I laid in bed thinking about what is happening to me. If that is not frightening enough, I begin to think about what will happen to me. I think about the future. I worry about who will take care of me. I worry about my financial situation. How long will my money last? Who will care for me? Where will I live? How will I live?

If anything makes me think about suicide, it is the fear of ending my days in poverty with no place to live and nobody caring for me. I don't want to live in misery, in poverty, in fear. I don't want to be alone, uncared for, stuffed into an institution waiting to die. If that is what my future looks like, I want to end it earlier rather than later.

Had I the time, I would have taken the money from my divorce and bought another home. Had I the time, I would have worked and saved and built my resources back up. It's not fair; I simply don't have the time to make it back. My family is not wealthy; there is nobody out there with the money needed to help me get a home, to help me make that home suitable for myself. There is nobody out there with the resources and devotion to help me live the end of my life in peace and modest comfort. I was supposed to do this for myself but I am running out of time.

This is the real terror of my situation, not that I will die alone and broke, but that I will live that way. I don't want to end my days in a care home where the staff don't give a damn about me. Let's face it, most of these places are just institutions for warehousing the forgotten amonst us. They are mailslots for the lost parcels, those amongst us with no place to go, no family to care for them or inadequate resources.

I am not Stephen Hawking. I don't have money. I am not the celebrated smartest man on earth. I am a working stiff, a guy who gets up every day and does his job. I am the guy that nobody erects monuments to, no pillars to mark my passing. I am just a regular joe with regular resources. I get up, I go to work, I get paid. I live, and then I die.

Dying is easy. Living scares the hell out of me.

Sunday, 3 February 2013

Buddha Belly

I have put on a few pounds lately, about five I would guess. I don't own a scale these days. This is kind of frustrating as I had spent the last year and a half getting my weight under control. Of course there is some contention that my weight loss, which started after the symptoms of ALS appeared, is simply a function of the disease.

So I put that theory to the test, ALS and weight loss. I started eating all the things I had given up. I started eating bread again, along with desserts and grains and all that stuff. On my diet, my line was "if it's white, it's bad". So rice was out except for small portions of brown rice, bread was bad except the odd bit of brown bread. And God forbid I should eat ice cream (but I did anyway sometimes).

My diet had moved to more proteins and fewer carbs. I started losing weight. When I started eating more carbs, I started gaining weight again. My Buddha belly is growing once again. The real question is, should I worry about this? It's not as if the weight gain is going to kill me. My heart will not be more burdened or my life span unduly shortened by a few extra pounds. Even if I was morbidly obese, the morbid part is coming from somewhere else.

In addition, given what my future looks like, it seems only fair to me that I should enjoy eating while I can still do it. I want to savour the taste of good food before I lose the ability to eat altogether. And it's not as if these pounds are going to chase off all the women clamouring to be with me. So what the hell, why not eat and enjoy it?

There is a clinical side to this as well. With ALS, my doctors have advised me not to lose weight and not to engage in strenuous exercise. There will come a time when I cannot eat; having those extra pounds will prolong my health believe it or not. Strenuous exercise is actually a net negative for me these days. Working out to lose weight will simply exacerbate the damage of the dead muscles and will actually accelerate disease progression.

What the doctors and physiotherapists tell me to do is lightly exercise muscles that aren't affected by ALS progression yet and stretch the muscles that are dead in order to reduce cramping. This means that doing simple things like getting dressed, brushing teeth, going to the bathroom, getting in or out of bed or even turning over in bed constitute adequate exercise for me. These activities are very tiring to failing muscles and can take a lot of energy, in other words calories. It may sound odd, but the mere act of trying to lift my quilt with my dead left foot requires a substantial amount of energy and attention. If I go too far, I get exhausted quickly to no benefit.

Now to get really counter-intuitive; think about the exercise process. It is intended to burn fat and build muscle. I cannot build muscle except in those muscles that are not affected yet. So if I engage in any strenuous active such as a cardio workout and I don't have fat, my body burns muscle instead. I need the fat as a target for any sort of calorie loss, especially later in the game.

Perversely, it is not the dead muscle that is burned if there is no fat, since that muscle tissues isn't even connected to my nervous system; those muscles are not firing and not working. The "feel from the burn" happens because of sensory nerves, all of which are working fine. It is the motor nerves that are dying. What most people feel as the burn from exercise happens with me too, but there is no underlying muscular development in the damaged muscle tissue.

To top it all off, we really don't know which of these muscles has entered the denervation process, since it is almost impossible to tell in the early stages. There is no test for ALS at any level, let alone the muscular denervation level. They can only tell if the nerves are failing once the failure becomes highly evident. All we know for sure is that all of my voluntary muscles will eventually be affected. In addition the human system is all linked together, so working my upper body actually stresses my legs, which results in muscle exhaustion which is really nerve exhaustion since the muscle don't actually work anymore.

It gets even better. Recent studies have found that people who drink alcohol have slower progression rates than people who don't. This is a loose correlation and nobody can really prove causation, but this is the only silver lining I have seen so far. Drinking helps!

So basically, I need to be a fat drunk to stay alive longer. Any takers?

Saturday, 2 February 2013


It's another one of those beautiful sunrises, where the clouds cling just high enough for the sun to glaze their root with peach, gold and orange in the morning breath of light. The edge of blue is made all the sharper by the cotton candy wisps, dark to the west and growing brighter as I slide my glance along the horizon to the eastern glow. I sit; I watch.

I say that I am not a morning person but this is not true. The truth is that I hate to get up in the dark, I dread the climb out of my warm bed, the struggle through my morning ablutions with the glare of artificial light my only illuminator. The darkness makes me dull, morose. My emotions feel lumpy, grumpy and bumpy. I am slow to respond, as if the darkness further weakens me. I am a living dead.

Then I see the sunrise, the morning breaking in glorious shades, creeping over the skyline and slowly sliding up into day. I see the blush of colour, first weak against the darkling sky then stronger as the sun pushes back the beast of blackened night. The blue leaks in, staining black to gray then blotting it away altogether. Morning clouds glide by, proving the moving power of the air and all of God's creation.

As the day creeps out from the clutches of night, I gather power. As the sky moves from a stone to a feather, the weight of my existence eases. As the clouds move from west to east, they move me. As light invades the darkness, my mood is lightened. So perhaps I am a morning person. Perhaps it is the night that is my real problem.

I am reminded of a line from "In Flanders Field" by John Macrea; "These are the dead. Short days ago they lived, felt dawn, saw sunset glow." The sadness in this poem, the loss is so powerful. Short days. They saw sunset. This moving poem acts as a mirror for me, a reflection opposite to my view. Getting up in the morning to see the morning light is an act of wonder, raising from the dead of sleep to the light of day. The sun is a resurrection.

I am alive. Living. Seeing sunrise glow.

Friday, 1 February 2013

Humility? Not So Much.

My daughter suggested I write about humility, or what I thought humility is. Let's face it. I don't do humble all that well. In fact I barely do it at all. So how on earth can I have anything to say about humility. Well the reality of my disease is that it forces me to be humble, to ask for help, to accept my limitations. Is that humility? Well it certainly is humbling.

The word humility is actually based on the Latin root "humus" which means earth. So to be humble is to be grounded, low, or from the earth. The Christian view of humility is that it is tightly linked with temperance. Anyone who knows me knows I definitely don't do temperance, so that's out. I have been pulled kind of low these days but I still have my spirit. Yet I do see myself as well grounded, rooted in some fairly basic principles.

I believe in doing my best, in working hard to make things work, in doing things completely and completing things. This isn't always true, not an absolute. I fail. There are plenty of things I have started but not finished, plenty of times when I just didn't want to work or or make things work. On the other hand I can always strive to achieve those goals. So I have principles and I believe in things, but that doesn't always lead me to humility.

The toughest thing lately has been around my need for help. I have always been a strong fellow, capable and able to look after myself. I have looked after myself, and my family, for most of my life. Now I can't do that. I can't carry my own water. I am losing my ability to do for myself, drive for myself, care for myself. This is humbling, that's for sure.

It's not that needing help is a bad thing. Still, it hurts. It is difficult. Given my self-sufficiency this loss is a real blow to my ego and self-esteem. I can see this hurt and loss of self-esteem coming out sideways at times in destructive ways and in needy behaviours. I lash out, I am grumpy and quick to anger. I complain. Sometimes I pout and am petulant. I did all of this before ALS but it's amped up with the disease. Ultimately all of this is an expression of the emotional pain I deal with every day. I am definitely feeling humbler these days and a bit remorseful at times given the way I sometimes act out.

Maybe I should look at it from a more spiritual approach. Perhaps all this failing of my body helps me to remember that humility in spirit is what is most important. It could be that I am learning how to put aside my pride and reach out for help. I can say for sure that I am certainly having to trust in the kindness of others to get through my day. To admit my weakness, that is humbling.

Humility is hard to do and I am not good at it. Perhaps pride is my real problem.