Saturday, 30 April 2016

This Is A Really Weird Disease

I'm feeling good today. Perhaps it's because I am having a wine bottling party which will produce more than 100 bottles of wine for my cellar. Perhaps it's because a host of my friends will be coming to help me with the bottling effort. Perhaps it is because Katherine is here, helping me along the way. In fact, Katherine is the most likely reason. She has been away, sick, for the last week, unable to visit because of the flu. Now that she is able to be with me again, I am once more feeling very contented.

Feeling good is important, but it is not to be confused with feeling physically good. This feeling I have today is clearly emotional. In fact, from a physical perspective, I am feeling much worse. The decline in the upper portions of my left arm is marked and noticeable. I am now having trouble picking up things like my transfer board, and I am even noticing the heft of a mug of water.

The funny thing is that my lower arm and left hand, while weakening, remain relatively strong, at least when compared to my upper arm. It is the oddity of ALS that I can pick out individual muscle failures, and some muscles live on long after all the surrounding muscles have died. I can still wiggle my toes, but I haven't been able to move my legs for a couple of years now. I still have the tiniest bit of flex in one of the muscles in the rear of my upper legs, even though I haven't been able to move the other muscles since before my diagnosis.

I asked the ALS clinic manager recently about how this could happen, how my left arm could be getting weaker but I could still drive. She pointed out that the muscles I use for major lifting are an entirely different group of muscles than those I use for driving. Once again, welcome to the weirdness of this disease. So my upper arm can hurt while my lower arm feels fine, and my right arm remains strong while my left arm weakens.

All of this, and yet I am still feeling very contented today, very happy. I have Katherine with me, friends coming over, wine to bottle. I have food in my fridge and freezer, gas in my truck, and a cupboard filled with canned goods. I am not starving, although I am certainly not rich. I guess I am feeling good because of all that I have, even though I have lost a lot. Emotionally, one part of me remains strong while the other part weakens, just like my body and ALS. Weirdness at its finest.

Friday, 29 April 2016

Some Mornings Are Warnings

Some days I know it's going to be a rough one. Some days advertise in advance, "Hey you! Get ready! Here I come!" Well it looks like today has all the possibilities of being a real bugger, the kind of day where you are simply unable to deal with it all.

For starters, my Home Care Aide arrived early, of all things; a full half hour early. The phone ringing to let him in the front door work me from a deep and sound sleep. I had been, as is often the case, awake earlier, at about 8:30, but I managed to get back to sleep. That's the one advantage of my constant fatigue. I can go to sleep pretty much on a moment's notice, anytime, anywhere.

The result of his early arrival is that I want to go back to bed now. Even during my exercises there was a point, while the HCA was manipulating my legs, where I almost fell asleep. It's been hard for me to get fully awake since then. Now that I am up, I am not sure how far I can go.

On top the the sleepiness, I'm having a lot of pain in my left hand, particularly around the base of my thumb. I'm not sure is this is ALS related, or the result of one of the many instances where I bang my hand about on something or other. My left deltoid still hurts, as does my left bicep. My right hand is sore but I am pretty sure this is just arthritic pain. It will go away as the day wears on, I hope.

Then there's the blood. I was having my shower and all seemed well. I had turned off the water and transferred to my wheelchair when I noticed a big splotch of blood on the floor beneath me. I could find no holes on my body, not obvious point of leakage. All I can assume is that it was from a hemorrhoid. It happens.

So... aches, pains, exhaustion, tiredness, bleeding. It sounds like a normal start to a day. My best hope is that it doesn't get worse. My first response will be to go back to sleep for a while, then start over. Maybe it will be better next time.

Thursday, 28 April 2016

Another Train

I'm sitting at the table, typing away. Katherine is in the kitchen, tidying, puttering. She's already had a go at re-arranging, or re-positioning, the new TV stand. I just made lunch; grilled Swiss Cheese sandwiches, fried garlic sausage, and salad. It's a completely domestic scene, and I love it. I love to hear her in the background as I type, to hear the noises of her activity, to hear the sounds of dishes, pots and pans, cutlery; to hear the fridge open and close as she puts food away, cleaning up the counters from my cooking mess.

This really is a good life for me, with her in it, with simple things making my life easier. This quiet, almost bucolic life takes away my tension, makes it easier for me to deal with the real challenges I face on a daily basis, things like failing arms, fights with the toilet, struggles in my wheelchair. It's this calm that means the most to me, girding me up for what must, inevitably, come next. I've eaten. I've had coffee.

There are real challenges for me these days. My left arm is sufficiently weak that I am considering having home care come in every morning to assist in my transfer from my wheelchair to the toilet, and back again. Another alternative is getting a mobile lift, one that can get me out of my chair as needed. It's only at the thinking stage yet; implementation will come soon enough.

The other thing on my mind lately has been going into a care home. I certainly don't need to yet, and my medical team encourages me to stay at home, to live at home with the help of home care. The only real advantage to a care home is access to constant care, and an ease on my financial strain. Right now I find myself consistently short of about $500 a month. I'm managing, thanks to the help of Katherine and others. But if I went into a care home, the fees would be limited because I am on a fixed income. I would have a bit more money to spare.

The major disadvantages of a care home revolve around my social life, the ability to have dinner parties, and living with a population which would primarily be substantially older than me. I'm not sure I like the idea of being the youngster in a care community. There are other issues too, but I am just beginning this thought process, this realization that the train is getting closer and closer. Soon it will arrive, and I will leave. That's how all this works.

Wednesday, 27 April 2016

Left Shoulder Pain This Time

I've managed to pull the deltoid muscle in my left shoulder. It should come as no surprise given that my left shoulder the weakest, and any activity at all can strain it. It could have been something as simple as a daily activity like picking up my shoes or rolling over in bed; or it could have been a transfer, perhaps into my truck or off of the couch. All these things put tremendous strain on what muscle ability I have remaining.

This sore shoulder has already had an impact on my day. I found myself needing two tries to roll up the small slope into my bathroom. It needed an extra step in the process to transfer on and off of my toilet, and getting from the shower bench was more difficult. All this because of the pain and limited range of motion. I've taken some Tylenol, but in reality there is not much to be done. It's not bad enough for a serious pain killer, just bad enough to hurt.

Speaking of Range of Motion, my arm exercises today on my left side were a complete fail. I was unable to lift my left arm at all when lying down. I couldn't move my arm though a full vertical range, nor could I swing it over my body without additional help from my HCA. The lower body exercises were only somewhat affected, mostly where I had to use my left arm to hold onto my legs during an activity.

This is how it all goes. What begins as weakness becomes overuse. Overuse turns into pain. Pain leads to reduced usage. Reduced usage leads to increased weakness. It is a vicious cycle. What's worse is that it takes so long for any muscle damage on my body to heal. Last year I had a groin pull which gave me trouble for almost six months. I'm hoping this pull repairs itself somewhat faster, since I still have some muscle activity there.

But I'm afraid; afraid that this damage won't self-repair, afraid that the loss is permanent, afraid of the pain. I get to be afraid a lot with ALS.

Tuesday, 26 April 2016

A Simple TV Stand

I've been frustrated of late, making a big deal about wanting a new TV stand. I feel like I need to justify myself in this want, as I will be asking people for money at some point, and I don't want them pointing at something as frivolous as a TV stand and asking my why I spent my money that way, and now I'm asking for more. This whole blog entry is a good example of the complexity of ALS and the way it affects my life, making simple things complicated, throwing normal logic out the window and replacing it with ALS stupidity. It's so fucking aggravating.

The truth is that I have a perfectly good TV stand, for now. The other truth is that there is a very good reason for me wanting another one, it's just really complicated. You can pick a lot of holes in my rationale if you want. But nonetheless, here goes an exercise which, by its very nature, will touch the nerve of dependency in me, pushing me to irritation, and then anger.

Let's start first with my existing TV stand; it's not so much a TV stand as it is a coffee table from Walmart, made with fake wood and faux wood covering. It's a low slung affair, intended for use in the living room, not really as a TV stand. It has the table top and a full width shelf below. It works for me as of now, with the TV on the top, along with the bass speaker and front speaker for my sound system, as well as the Internet modem and TV controller from my cable supplier. The second shelf, the lower one, has my XBox resting on top of my Blu-Ray player. The rest of the shelf is taken up by storage of games, CD's, and DVD's.

So, the first step in this logic chain is what is happening with my TV cable supplier. In June my low cost promotional package from Telus Optik TV will come to an end, as will my low cost promotional package for Telus Internet. At that time my monthly cost will go from $65 a month up to as high as $160 a month. At that point I am going to have to decide what to do to get that cost back down. I'm pretty sure I will just eliminate the cable TV portion of my package and switch completely to Internet based entertainment content such as Netflix or web delivered TV.

That move will eliminate my Optik TV control box and make my Blu-Ray player my principal entertainment delivery system. However the Blu-Ray player is on the bottom shelf. In order to get the remote control to reach it, I have to lean over in my wheelchair and use my lowered right arm to point the control at the device. Leaning over in my wheelchair is rapidly becoming nearly impossible for me as I lose all the strength in my core muscles. With my current TV stand, I cannot move the Blu-Ray player up to the top shelf. It's too big to fit with the TV.

So this means my main entertainment device will require that I re-position myself, and my wheelchair, every time I want to select a program, change the volume, or adjust any other setting. For me, that is difficult and tiring. I need to keep things easy, not make them harder. Overall the best solution to this is to get a different TV stand, one with three shelves, a higher profile, and a mounting stand for the TV which will allow it to swivel.

So I want a new TV stand. It's not a necessity. I could get by with this one for a while yet, although one day even this will have to change. But it's not just about need. It's about using my energy carefully, eliminating barriers and difficulties in my life. It's also about $200, and that's my real issue. I can buy it on my credit card, but I still feel like I have to gain the approval of those who help me financially, to have them understand that this is not a frivolous purchase, that there is a real reason and rationale behind this want of mine.

Several people have suggested that I look for a used one online, that I might find one that works for a fraction of the cost for a new one. That's true, if you have the energy to look and the ability to adapt to something which is "almost good enough". I really hate the risk of buying something used which might work, but with no return option if it doesn't. Plus I really don't like buying used stuff; that's an emotional issue for me as much as anything else.

The other emotional issue is the general sense of anger and frustration in this whole situation. A few months back if I wanted a TV stand, I would just go out and buy it. A few months ago, I could lean over just fine; the remote wasn't a problem. A few months ago I wouldn't have been worried about $160 for TV and Internet. I few months ago I was supposed to be dead. And all I want is a decent fucking TV stand!

Monday, 25 April 2016

It's A Crazy Maker

This is such a strange disease. For anyone not going through it, the process of slow death from ALS, the process of losing everything along the way, the frustration, the madness, the anger; it's all so difficult to put into perspective. Living this way, with the slow deterioration of my body, with the loss of my independence, the loss of capacity, the loss of freedom, with the ever increasing level of inability. It's a crazy maker.

There are people in my own family who are so completely unable to deal with seeing me go through this that I don't hear from them at all. Some of my children don't read my blog; I suspect it's just too much reality for them to deal with. Friends have left, gone because they simply don't know what to do or how to respond. Nothing really noticeable is happening, so why worry? Once again, it's a crazy maker, not just for me but for them too.

Perhaps the worst part is the complete lack of drama, the absence of any sort of crisis or immediacy. While I can tell in intimate detail the effect ALS is having on me on a daily basis, it doesn't involve hospitals or surgeries or powerful medical treatments. In the worst of all possible ways, ALS simply involves sitting, watching, waiting, and living with the fact that each day is just slightly worse than the one before. It is truly a death by a thousand cuts, most of them so small they are unnoticeable.

I am simply unable to properly express how I feel. It is such a mixture; frustration, acceptance, anger, sadness, depression, joy, happiness. All bundled into one, sometimes even at the same time. I can't cry that much; I'm happy to be alive. I'm not ready to end my own life; the disease isn't far enough yet. I'm in this kind of bland, gray middle ground, too sick to live, not sick enough to die. I'm waiting, impatiently, for something to happen. I am waiting for the next shoe to drop, except there are no shoes, only little bits and pieces. And it's still a crazy maker.

Sunday, 24 April 2016

A Wee Giftie

I didn't want to get up this morning. As I've said before, waking up is hard to do. But I did. I have company coming for dinner, and you can't make dinner for six if you stay in bed. I don't feel like getting dressed this morning, but I will. After all, receiving guests in your underwear only works if you are under the age of 8.

There are some things I want from Safeway, across the street. That means I will have to transfer to my PWC and head out into the fresh air. I don't want to go through the effort of making the transfer, but if I want the things I want to serve for dinner, I need to go and get them. I can't have my guests thinking I don't care; I do.

Dinner will have to be prepared. I will make myself do this, even though it would be easier to sit on my couch, drink wine, and watch TV. I doesn't seem right to invite people over so they can do all the work. I am a proper host, even though it takes a real effort on my part. I want to do this right.

You see, the simple act of coming over for dinner can give me a lot to do in my day, give me a lot of reasons to do those things which I would likely not do if you weren't coming to see me. When you come to visit, it's great to bring me a "wee giftie", in the old Scottish way. It's the way I was raised. On the other hand, it's also wonderful if you come and enjoy your time with me, perhaps helping with the last minute preparations, and certainly with the clean up afterwards. No need to bring dinner with you.

If you wonder what you can do to help me, or other PALS, spending time with us is the most important thing. One day I won't be able to make dinner; then you can bring it with you. One day I won't be able to go grocery shopping; you can help with that. One day I won't be able to get dressed; please forgive me, but you may have to avert your gaze or help me adjust a piece of clothing. One day, I won't be able to get out of bed; please just come and sit with me.

But never forget, Scotch is always an excellent "wee giftie".

Saturday, 23 April 2016

Living Below The Poverty Line

The skies are grey and cloudy here in Calgary today. There is a bitter chill in the wind, the air already bitingly cold and unseasonal. It's cold enough that the rain falling fitfully outside my window might even had the odd flake of snow in it. This weather is far different from just a couple of days ago, but it's the reality of spring here in southern Alberta; shorts one day, parkas the next.

This weather is probably not helping my mood all that much. I'm grumpy today, feeling angry about my life situation, especially my financial situation. I'm poor. Based on my income, I am subsisting below the poverty line. Based on my budget, I am falling behind about $500 each and every month. I survive only by the good graces of generous friends, and Katherine.

It's been suggested to me that I could work, just enough to make that $500 a month. I suppose that's true. The problem is that I am so completely defeated by ALS that the very idea of putting effort into anything is beyond me. It's the best I can do just to keep going each day. It takes all that I have to go through the process of getting up, dressing, and existing. Everything that looks like it will take more out of me is something I feel completely unable to do. I'm beat, and ALS is beating me more and more every day.

It hits me worst when I consider discretionary income. Everything in my budget is consumed by housing, food, and living expenses. Even so, I am falling behind each month on my condo fees, building up ever more debt as time goes by. Anything I want outside of the very simplest of basics is beyond my ability. If I want something, simply because I want it, I cannot have it without asking someone else to buy it for me. I could use my credit card, but even that has a limit on it.

If you hear me talking about luxuries, like wine making supplies or road trips, rest assured that these things are only possible because of the generosity of others. Katherine is by far and away my biggest contributor, but the donations to my blog have helped me do things like buy wine kits and have a photograph of much children enlarged and mounted so it can hang on my wall.

I hate not having money. It depresses the hell out of me, especially when I realize the impossibility of my working. I know there are possible solutions; I could write for money if I can find a publisher and a subject, I could see about working at Walmart as a greeter a few hours a week, I can do more begging. But the reality is that each day I am less and less able to do any of these things.

I feel so trapped, so disempowered, so disabled. I hate living within my means when my means are so meager. I should have died last November, when I ran out of money. That was the plan. It didn't work out that way. Nothing has worked out according to plan with this stupid disease. It sucks.

Friday, 22 April 2016

Butter And A Warm Knife

My hands shake a lot. On Wednesday, while at the ALS Clinic, one of the doctors was discussing the shaking with me, and commented that it really wasn't spasticity so much as it was a kind of tremor. So I asked, what kind of tremor. She said she wasn't really sure, and that it might be related to my medications or perhaps some non-ALS source. I pointed out that the shaking started after I got ALS, and has gotten worse as time has gone by. Correlation, but not necessarily causation.

That's the problem with this stupid disease. You're never sure if what you are experiencing is a symptom of the disease, or just a symptom of life in general. Was it ALS that caused my terrible shoulder cramp on Tuesday, or was it just one of those things? Do I sleep 12 hours straight as a result of ALS, or just because I have no structure in my life to force me to get up in the mornings?

There are things I know for sure are caused by ALS; loss of muscle strength, failing fine motor control and coordination, constant inexplicable exhaustion. Then there are the things which probably would not have happened without ALS; weight gain, edema and swollen feet, deep vein thrombosis. And finally, there are the things which are happening just because I am getting older; bladder issues, failing hearing and vision, loss of strength. Oh, wait. Loss of strength is ALS too. So there you go.

Here is an even better example. Yesterday I got up and didn't bother to get dressed. I had company coming in the evening, but I was alone for the day. Katherine was not here at all; she had commitments for the day and evening. I transferred into my wheelchair and rolled into the kitchen to make coffee and toast.

I made my coffee and, after putting in the milk, realized I didn't have a spoon to stir it with. What I did have was my clean knife for buttering my toast. So rather than spin my wheelchair around to get a spoon, I just used the knife to stir my coffee. I came out clean, and warm. Then I used the knife to butter my toast. As I sliced off a bit of butter, it fell off of my nice warm knife, straight down into my private parts.

Now I'm pretty sure that spilling butter on my penis is, in some way, related to having ALS. First, there's the wheelchair in general, and not wanting to turn about. Then there's the shaky hands and a warm knife with butter on it. There are so many other things to which I could attribute this novel experience, but I'm going to stick with ALS. And next time, I'll be more careful with the butter.

Thursday, 21 April 2016

Dishonest Research Results

There was another article in the media today, another story of a breakthrough in ALS research. If you didn't see it, I can understand. Perhaps it was lost in the swathe of stories and articles about the death of Prince, the musician. The sad truth is that neither of these stories will have a significant impact on my life. I was never a fan of Prince, and buried in the article about this research breakthrough which might help prolong life in people with ALS was the tidbit that this research would likely take 10 years to produce a drug, if it actually works.

Prince is dead. It is a sad thing that anyone should lose their life at 57 years of age, whether he be a famous musician that most of us have heard, or a regularly schmuck like me, although I did make it farther along than he. I am sorry for the loss to his family and friends, sorry for the loss to the musical community.

I am also sorry that an article heralding a breakthrough in ALS research says it will take 10 years to produce a treatment from this research. The average ALS patient dies within 36 months of diagnosis. Fully 80% die within five years of diagnosis, and only 10% make it to 10 years and beyond. I am unlikely to be in that 10%, although this is a faint hope that I might make it to five years.

These articles announcing hope for the ALS community offer so little. I know that research takes time, but I have become substantially cynical about these research releases. I am convinced these articles blaring forth their triumphant successes are more about gaining additional research dollars than they are about significant breakthroughs. Unfortunately, in the process of raising money, these researchers raise hope, in a group that has so little to be hopeful about.

I am not saying we should not fund this research; we should. It is desperately needed for more than just ALS. There are a host of neurological disorders we can do little or nothing about. This research will help more than just me. It will help so many, in the future. But I get a little tired of it all, seeing people express hope, display wonder and excitement at the ability to potentially treat mice with ALS, but not people. At least not for another decade.

We need viable treatments, now. We need a cure, now. We need something to hope for today, not at some point in the future long past our foreseeable death. By all means, tell the stories and print the articles, but let's top burying the reality of timelines and mice somewhere deep inside. It's disingenuous, if not downright dishonest.

Wednesday, 20 April 2016

Pillar To Post

It's funny, or not so funny, how this disease can go from pillar to post in such a short time. Yesterday I felt terrible, in pain, tired, unhappy. Katherine and I did some errands after dinner, When we came back she helped me hang pictures, and then I went to bed. I read in bed for a couple of hours, then finally fell asleep, sore shoulder and all.

This morning I woke up feeling great. I felt almost enthused to be up and about. I'm in a good mood, the pain is mostly gone, I feel like I'm ready to live, to attack my life. I'm not any stronger; in fact my shoulder and right side has undergone a definite change. Yet I expect these changes. I'm not surprised. I just feel good today, for no apparent reason.

That's the thing with my life in general. I can go from having a good day to having a bad day in almost no time at all. It's as if I was forever on the tipping point, one day thinking life could be long, and good. The other day wishing this was all over, wishing this disease would just hurry up and get it over with.

I did find myself having an interesting thought yesterday. Even though I was doing very badly, I found myself thinking that I could go a long way into the end stage of this disease with Katherine at my side. She really does make a big difference in my will to live, in my quality of life. I found myself contemplating life with limited movement, as long as she was at my side. I actually didn't mind that thought.

You draw a line in the sand with this kind of a disease, a line you feel you won't cross. Then something changes, and the line moves. Something happens and you want to live even longer. On the other hand, some changes bring the line closer, forcing you to contemplate that which you do not want to see. The end of my life is a moving target, just at a closer range than most, and with a higher degree of certainty. Today that line looks distant. Yesterday it looked a lot closer. Pillar to post.

Tuesday, 19 April 2016

Pain In My Right Shoulder

Not a good morning. I can barely type right now. Not because of weakness, but because of pain. I am suffering from the mother of all cramps in my right shoulder today. The cramp started deep inside my shoulder and ran up into the back of my neck. Now it's just sitting there, holding the muscles just tight enough to hurt like hell when I move, the pain radiating down my right arm, into my biceps and almost to my hands. My left arm is kind of in on the action too, with a mild responsive pain, but nothing like the right.

This was not a long in coming cramp. This is not because of how I slept or a pinched nerve. I was just fine up until I sat up in bed. Then, like lightening, the muscles deep inside my right shoulder decided to strike with frightful suddenness. I've never experienced something like this before, this large scale kind of cramp. My legs, and even my arms, have been through this on a more localized version, where one muscle, or even a couple of muscles cramp up. But never such a big cramp over such a large muscle mass.

It's interesting in one regard. The other day I was watching my right arm and shoulder. There were fasiculations in my shoulder muscles at the same time as my right bicep was spasming, twanging like a guitar string. I'd never seen that before, spasticity and fasiculations at the same time. From a clinical perspective, it was fascinating to watch.

For some people, fasiculations have been closely related to cramping. This has not been the case for me, at least up until now, perhaps not even now. I haven't had this much serious cramping before, although I have had lots of smaller, equally painful cramps. Most have gone away fairly quickly; this one not so much.

As I write, relax, and breathe, it is slowly going away. Not fast enough. Katherine is worried about me; she wants me to get some medication. She wants it to go away. It's got to be frustrating to see this and not be able to do anything about it. I can't do anything either. Just wait.

Monday, 18 April 2016

PWC Means Power WheelChair

I'm having to get used to two changes which are coming to my life in the near future. It is almost a certainty that I will lose my ability to drive sometime this year. And it looks more and more likely that I will be spending more time in my power wheelchair as time goes by. I don't like to bet on these things, but I need to plan for them. It's not if, but when.

So in this effort, I have decided to do some excursions in my power wheelchair. These excursions will assist me in finding out how far I can go, and what I need to do in terms of using public transportation. If I cannot use my truck and yet still remain relatively unconstrained, I need to build confidence in getting somewhere, enjoying the trip, and getting back, all without running out of battery power.

On Saturday I tried my first outing. It was a relatively short trip, up to a nearby Coop grocery store and across to the Northland Village Mall. This excursions represents what might be a typical run for me, a trip to go shopping. The total trip was about 6 kilometers, a distance of about 3.6 miles. The travel consumed about 40% of my available battery, meaning that I have a total run distance of about 15 km, or about 9 miles.

This might not seem like much, but it is a fair distance, farther than most people would go on a daily walk or even a hike. What's more, this is my total run distance, but not the total distance I could cover. Add access to public transit and I can go pretty much anywhere in the city, even with a long transfer by wheelchair somewhere in the trip.

What I need to do now is get up the courage to do this, to make use of my Power WheelChair more. The PWC will become central to my life soon enough. I may even find myself using it more and more inside my own apartment as my arms become weaker. My next excursion will be another local voyage, just a bit farther. I also plan on using the PWC to explore the local riverside park. It's spring. It's time for me to get outside. I have the tools to do this; all I need is the will.

Sunday, 17 April 2016

Slip Sliding Away

Whoah God only knows, God makes his plan
The information's unavailable to the mortal man
We're workin' our jobs, collect our pay
Believe we're gliding down the highway, when in fact we're slip sliding away.

That's the chorus from the song "Slip Sliding Away", written by Paul Simon. It expresses a lot of what I am feeling lately, that slow slide while not knowing what is really happening to me. It's especially poignant when I consider the losses in my arms and upper body over the last few months.

These changes are really hard for others to see right now. They are only clearly visible when you see me do something like transfer out of my wheelchair into my truck or onto my couch or bed. It's there that you can clearly see the increased in difficulty from as little as a few months ago. My arms can no longer lift me up out of my seat; they have lost most of their strength. They can still do light work, and even the odd heavy bit now and again if I am lucky. But mostly, they are weak and unable to do that which I ask of them.

Sitting up is another example of how this change is working its way with me, another example of how I am slip sliding away. I can no longer sit up on my own, without some form of mechanical or personal assistance. Mostly that assistance comes in the form of me grabbing on my M-rail or some other nearby solid grip. First I roll onto my side, then I grab the pull, and using both my arms I pull myself up into a sitting position.

I am wobbly once up there. What's worse, if I fall backwards I cannot always roll to my side. That's where I start to need human intervention. On the other hand, if I wait a while, gather my strength, use other hand holds which might not seem obvious on first glance, I can usually get there. The problem with being unstable while sitting unsupported is increasing, but most people don't see it because they see me in my wheelchair or on my couch. So it's not obvious.

Transferring too and from the toilet is also becoming increasingly difficult for the same reasons. My arms cannot lift me well enough to make the shift over. What I do now is get halfway, rest on the edge of the toilet seat, then pull myself into my wheelchair. Getting onto the toilet is kind of just the reverse process. It's ugly, but it works.

I'm losing my arms, slip sliding away. It's obvious to me. Soon it will be obvious to everyone who sees me. As I near my destination, the more I'm slip sliding away.

Saturday, 16 April 2016

Things Get Better

Katherine has a super power, an absolutely magical super power. She can walk into the room and, without saying a word, brighten my day, easing my doubts and soothing my pain. Then she hugs me. She wraps her arms around me and no matter how deeply distressed I am, I feel better. She tells me everything will be okay, and I know it is true. She loves me, she protects me. She defends me. She has my back, no matter what the fight. Like I said, she has a magical super-power.

Yesterday I needed that super-power. I managed to get myself into quite a self-pity state during the day. It's pretty easy for me to do, all I have to do is compare myself with other people, sometimes specifically and sometimes generally. I can always find a way to make myself lose in the equation. I can always find a way to see myself as the failed part of the comparison. It's not a natural skill; it's human nature.

Comparisons are dangerous. No matter what your situation, there will always be someone better off than you, and worse off too. If you compare finances, there is always someone with more than you, and someone with less. If you compare health, there is always someone healthier, and someone in worse shape. If you compare yourself emotionally, there is always someone crazier than you, and someone saner. That's just how it works.

I've heard it said that the only real comparison is to compare yourself with yourself. But even that is unfair. The circumstances you were in yesterday were different than the ones you are in today, and different again that the ones you will be in tomorrow. Even this comparison fails, because time changes everything.

So yesterday I got myself into a state, thinking of how my children loved their Mother more than me, how they did so much more with her and for her, how she gets to see our grandchildren so much more often than I do. Then I got myself into even more of a state, thinking about what a failure I was as a Father, and as a man. I can't even pay my own bills these days; I am dependent on Katherine, on family, on friends, on begging, just to make ends meet, let alone to have anything more.

Then Katherine walked in the front door of my apartment. I felt better. She came over to hug me, clamping her arms around me like magnets to steel. I felt better. I told her how I was feeling, how I was jealous of my ex-wife, that she had so much more time, so much more of a relationship with our children and grandchildren. I told that I couldn't make the insurance payment on my truck; my credit card didn't have enough room on it. I told her I felt like such a loser, such a failure.

The first thing Katherine told me was to not worry about the truck insurance. I know what she meant, but I still felt like such a failure. Then she listened and talked with me, reminding me that I did not ask for this situation, that I was doing the best I could. Then she said one of the best things she could have said. She asked the question, "Why are you jealous of your ex-wife?" She went on to say how my ex-wife might have better relationships with my kids, but I didn't really know that. She might see them more, and spend more time with our grandchildren, but I had something my ex-wife could never have. I had her.

I felt like I had been hit by lightening. In that startling moment I realized that I didn't care if my children loved my ex-wife more than me. It was a stupid comparison anyhow. I didn't care if my ex-wife was happy or not happy, lonely or not lonely, rich or poor. What I really care about is my life, today; the life with Katherine in it to remind me of how lucky I am, how fortunate I am to have my children, how fortunate I am to have her.

I am a fortunate man. I have children who love me, who make every possible effort to see me whenever they can. Katie is here at least once a week and often twice every week. She sees me a lot more than she sees her mother. Mary moved mountains last week, getting her husband to take time off work to drive her and the kids to the ferry, dragging two small children on a long ferry ride, taking them home late at night, all so she could spend a few hours with me. Meaghan made the extra effort to come and see me at the hotel one night, even though she was going to see me the next day at my Mom's place. Ricky took the time one night, time he needed to rest for work, so that we could sit together at Moxie's for an hour, chatting over a beer.

I am a very fortunate man. I have Katherine, a woman who does everything she can to make sure I am happy and safe, a woman who has never criticized me in a harsh manner, a woman who supports me in every battle, stands beside me in every fight, takes up my sword when I am too weak to carry it. I have a woman who loves to be with me, yet is wise enough to leave me to myself on occasion.

She also has her magical super-power. When I am alone, when I make stupid comparisons, when I talk myself into pity and misery, all she has to do is walk through the door, and things get better.

Friday, 15 April 2016

The Shuffler Returns

My home care worker this morning was "The Shuffler". I swear this woman is the slowest person I have ever met, seeking to minimize every effort on her part, looking to move as little as possible with any and every task, including picking her feet of the ground as she walks about in my apartment. She slides them, slowly, the soles of her slippers sounding like sandpaper across the laminate of my floor.

First of all, let me once again state that this HCA does the minimum needed to accomplish her tasks, to fulfill her role, but she does it. This is the woman who stands in the doorway as I dress, leaning against the door frame, unable to stand on her own. This is the woman who uses my dresser to prop herself up, as if the work involved in standing was too much for her. Yet in all of this, she does, to the minimum possible, that which is asked of her. She does her job, while clearly not enjoying it, with the leanest of efforts possible.

This morning, knowing full well that if I said nothing she would do nothing, I asked her to empty the dishwasher while I was in the shower. I know this to be true from past experience, and even her own approach to things. She constantly asks "What next?", even though she has been through my routine at least a dozen times. She doesn't look at the Care Plan, which clearly says to do light housekeeping as part of her visit. She did empty the dishwasher, as I asked. What she didn't do is empty the dish rack beside the dishwasher, the one full of clean, dry dishes. I didn't ask; she didn't do. Nor did she think about doing something beyond the minimum of what was asked.

I've worked with people like this. I've learned that these kinds of people need specific, long lists of what to do next. They often resent it. They get grumpy when they see the list. They work slowly, if not on purpose at least by habit, so the list never seems to get shorter. My list here at home is very short, very specific, and when she is here, very ignored.

To be honest, she depressed me this morning with her grumpy looks and sloth approach. After my shower, I asked her to leave. No exercises please. I just didn't want her around anymore, making me feel uncomfortable. Perhaps that was her goal, to get out of my apartment while doing as little as possible. She succeeded. I wonder how she feels inside.

Thursday, 14 April 2016

Good Advice

Every once in a while I give some thought to some of the advice I've gotten in the last few years, some of the comments which have shaped my approach to living with this disease. There have been lots of them, but only a few have really been useful, really helped me to keep my focus on living and enjoying my life. In fact, there are three which really have made a difference to me.

The first was a piece of advice from my diagnosing neurologist. He said "If there is anything you want to do, do it now. Do it early rather than later." Living in the now, living in the moment, understanding that tomorrow won't be a better time to do something, that every time I do something it may be the last time; this is the only real way to live with a disease where the dream of a future is so clearly smashed in front of you. I'm glad I listened to him. It's lead to some wonderful things in these last few years, things I could never have expected.

The second piece was from my brother, Jim. He said, fairly early on in the game, that if I was going to spend money on something I wanted, do it while I could enjoy it. He noted that as I got worse, I would be able to do less and less, my life would get naturally more restricted, and I wouldn't be able to do as much, so wouldn't need as much money. While the timing has been out a bit, the advice has been spot on. As my energy levels wane, I can't, and don't, do as much. For me, a big excursion is going out grocery shopping for a couple of hours. I don't have a boat anymore. Camping, fishing, and hunting are mostly out of bounds. I spend a lot of time at home, watching TV, not just because I don't have the money, but also because I don't have that much energy for other things.

The third piece of advice was from my friend, Mike. He said "Never put a TV in your bedroom. If you do, you won't get out of bed." This morning I found myself wishing I had a TV in my bedroom so I could stay in bed. Fortunately I didn't have one there, so I got up, not to watch TV, but to get started on some sort of a semblance at activity. Had there been a TV, I would likely still be supine, staring at the flickering light.

There is one thing I wish I had done better. I wish I had had more money when all this started. I wish I had done better in the divorce settlement or saved more money on my own, or was able to work longer while in the early stages of this disease. That way I could travel some more, something I still love to do, something which gives me so much and takes so little, something in which I am truly interested.

But you know what? I didn't. This is where I am. It's not so bad. In fact it's pretty good thanks to some excellent advice.

Wednesday, 13 April 2016

Night Driving

Today is a rest day, a recovery day from yesterday, when I did a 12 hour push from Vancouver to Calgary in my truck. That drive included a stop off to see my Mom, and an enforced half hour lay over in Kamloops while getting my truck checked out. The "Check Engine" light came on as I headed down the big hill into town. Turns out it was an O2 sensor on the exhaust manifold; nothing serious. In fact about two hours later the sensor recovered and the light went off.

A rest day doesn't necessarily mean I get a rest. I'm tired, that's for sure. I could definitely go back to bed and spend the afternoon there. However there is laundry to be done, things to be tidied and put away. This morning, Home Care was here to help me shower and do my exercises. There is definitely no rest for this wicked. Still, I am at home, sitting in my wheelchair, drinking a cup of coffee and certainly feeling no sense of responsibility for anything in particular.

I have to admit to being kind of proud of myself. Other than a short stretch between Merritt and Kamloops, I was in good shape for the whole drive. That short stretch was between 3:00 PM and 5:00 PM, a time of day when exhaustion usually hits me hard. Fortunately the stop at the Ford shop to get that sensor checked out meant I had a half hour break, an interruption which enervated me more than anything.

What this shows is two separate things. First of all, I can still make the drive. I can still take the wheel of my truck for a long haul day, making miles as needed. It's a nice thing to know that this is still well within my capabilities. Second, my tiredness between 3:00 PM and 5:00 PM is so pronounced that this will become a rest period for me on all road trips from now on, with at least a half hour break in there somewhere.

On this trip I found I particularly enjoyed the night time driving; the lack of traffic, the absence of line ups for services. I don't mind driving in the dark; my night vision is still excellent, good enough to see a deer grazing on the verge of the opposite side of the road through my peripheral vision using only the side cast from the truck's headlights. This has not been taken from me, and likely will not be for a long time.

It's good that I can still drive. Getting into the truck, however, has become a major difficulty. That, it anything, is what will stop me. For now, I have Katherine's help, but that limits me to travel with her, or someone else to give me a boost. Maybe that's not such a bad thing.

Tuesday, 12 April 2016

The Long Way Home

We are headed home today, back to Calgary. My Mom is doing much better, her infection well under control thanks to the IV antibiotics. Ray has things well in hand, and they've even had a chance to talk to a Home Care representative about getting help here in their apartment. While they don't qualify, yet, for personal care, they can get support services such as cleaning and meal preparation for $12 and hour. It's still a layout, but not as much as they were paying before.

It bothers me a lot, the differences in level of care from province to province in this country. Our medical system is supposed to be universal, yet there are substantial differences, especially in supplementary services like Home Care, from province to province. On the other hand, I thank God on a daily basis that I don't face the challenges which our American cousins face, with their private insurance and medical. At least here in Canada, I am confident Mom and Ray will get the support they need at a reasonable cost, and without a lot of fuss.

As for me, I plan on doing something adventurous today. I hope to make the whole drive, from here to Calgary, in one day, one 12 hour day. We will leave here shortly, be on the road by noon, stop to see Mom for a few minutes, then head east along the Trans-Canada Highway. I don't actually plan on driving for 12 hours straight. I plan on breaking it up into manageable segments, with plenty of rest stops along the way.

Our first goal will be Hope, then onto Kamloops, about three hours from Vancouver. Then, Salmon Arm, another hour and forty minutes east. At that time I will see how I am doing. If I feel up to it, we will head for Revelstoke, about an hour further east. Once again I will stop to assess, and likely take a long rest. After that comes Golden, two more hours away, then finally, Calgary, three hours after that. If I get really tired we can stop for the night in any of our major rest points. We could even stop in Canmore, an hour from Calgary, if it gets bad.

The whole drive, including the one hour time change, should take about 12 hours. That puts us home at around midnight. If I make a couple of longish stops along the way, that might make it 1:00 AM. I can do that. I've done that before. I just want to see if I can do it again. If not, there are always hotels along the way. We'll be good, I'm sure of it.

Monday, 11 April 2016

Energy Management

One of the key markers for ALS is a lack of energy. I suspect this is true with most chronic illnesses. When your body is busy fighting a disease, your energy goes there instead of into the activities of daily living. You're tired because you are using all that strength to keep going. With ALS it's even worse, because you never get better and there are no treatments. So you just fight, and lose energy.

It comes to the point where you start making choices of activities based on energy consumption and your energy level. Yesterday, for example, I was driving Katherine around the UBC campus, showing her the various sights. We stopped at the Museum of Anthropology. I encouraged Katherine to check it out while I had a nap. It was an energy based choice for me. I was starting to get tired, so I decided a nap was more important than the museum. I'd seen it before; she hadn't.

There are simpler things than that. If I want a couple of things at the grocery store, I used to transfer to my power wheelchair and run across the street. These days the transfer takes a lot out of me, uses a lot of my precious energy. So instead I ask Katherine to pick it up, or Kate to pick it up, or someone else to pick it up. That way I avoid the transfer, and save the energy. If I spill something on the floor, I wait for someone else to pick it up or wipe it up. That way I am not using energy bending, stretching, cleaning up.

These days I've even started thinking a lot about the energy it takes to get up in the mornings, to get dressed, to get into the bathroom. I know when I stop doing these things my life will spiral downward very quickly. But I can see how other PALS end up making these decisions. At some point I will not have the energy for it. At some point I will have to make the choice, or rather, the disease will make the choice for me.

Right now I am careful. I manage myself as best I can. I choose methods and ways that minimize the use of my closely guarded energy reserve. If I can avoid it, I avoid it. If I can ask for help, I ask for help. If I can do something different that takes less out of me, that's what I do. I still get up, grudgingly. I still get dressed, most days. I still get out of bed; my bathroom needs eventually force that one. But I can see it coming, the day when it will take too much, the day when I will need help simply to sit up, to dress, to move about. That's going to be tough.

Sunday, 10 April 2016

My Own Little Xanadu

Yesterday we called an ambulance and had my Mom transported to hospital. She has a serious UTI; her bladder has been removed so we can't call it a bladder infection anymore. She's had a few of these. The come on rather suddenly, and are easily treated with IV antibiotics in the hospital. Nonetheless, the period of time between onset, discovery and transportation is frightening. During this time, she becomes semi-conscious, comatose. She won't wake up, barely responds to any questions, if at all. Her legs are weak, shaking so much that she cannot stand or walk.

I've decided to stay a few extra days here in Vancouver. Katherine has rearranged her schedule at home, passing off a church responsibility to a fellow member, clearing her calendar so she can stay as well. Doing this without her help would be a near impossibility, especially while staying in my Mom and Ray's apartment. This place is lovely, a beautiful condominium apartment with a loft, well laid out for anyone who is not in a wheelchair.

For me, there are three things which are the definition of difficult, besides stairs, which are an impossibility rather than a difficulty. This trio of trouble is carpeting, narrow doors and hallways, and small rooms, especially small bathrooms. Unfortunately, in order to maximize full use of the available space, Mom and Ray's apartment meets all of the above criteria.

The whole apartment is carpeted, making for a tough push in my chair. The doorways are all small, no more than 30" for the largest, and 28" for the smaller doors. The hallway, the one hallway, is narrow and has a 90° turn half-way down. The bathroom is not just small, it's tiny. Getting me in there requires Herculean efforts and massive help from Katherine. The guest bedroom is no bigger than a closet.

The living room, dining room, kitchen, master bedroom and loft are all spacious and well lit. You would expect this; the apartment is designed for living, not for wheelchair living. It's getting nearly impossible for me to stay here. I am very sad about this, especially right now with Mom in the hospital. I would like to stay as long as possible, but staying here is very difficult, and staying in a hotel is very expensive.

I will stay as long as I can, thanks to Katherine's help. Mom will get better. Then Katherine and I will head home, where I will find my own Xanadu, a bathroom where I fit, wide hallways, large rooms, big doors, and no carpet. Heaven.

Saturday, 9 April 2016


I've heard a number of stories of marriages which have failed under the strain of ALS, of caregivers simply walking away from PALS, of people left on the doorsteps of hospitals or care homes. I know of several marriages which have been torn apart by the strain and difficulty of ALS. I also know of those which have grown stronger, as couples have come together to live with the struggles of this disease.

It's easy to see how it happens. Last night I was having a particularly difficult time getting to and from the bathroom in Mom and Ray's apartment. This bathroom has been a challenge for me ever since going into the wheelchair. As I have gotten worse, things have become increasingly difficult. Yesterday was a kind of a crossing point. I couldn't get off the toilet without substantial help including the use of the transfer board. Then we couldn't get the transfer board out from underneath my sticking skin. Moving down the hallway was almost impossible. The whole process completely exhausted and frustrated me.

Katherine and I worked together on this. While I will, at moments, get snappy and churlish, I try my best to keep it under control, to keep reminding myself of how much help she gives me. Last night, I was pushed to my very edge to keep myself in check. I did, mostly. So did she. Trust me, on occasion this gets to her too. After a great deal of work, we managed to get me into the bedroom where I could do an equally difficult transfer onto the bed so I could get dressed.

As I was getting into the bedroom, through a door too narrow and a room too small, my Mom expressed dismay and asked why it was so hard "this time". I snapped back, "This is a progressive disease, Mom. It's progressed." Ray said "You did fine yesterday." Again I snapped back, "It was just as hard yesterday. I just didn't say anything about it."

I apologized for my words and tone almost immediately, but unfortunately words once said cannot be unsaid, nor the tone softened or repealed. I've apologized again, and Ray has assured me it had no impact. But still, over time, I can see how repeated snaps of temper like that could become too much for any relationship.

This is a horrible, frustrating, debilitating, aggravating disease. No matter how much you try, it will try you more. No matter how hard you fight, it will keep on coming. It's easy to see how it destroys my life. It's just as easy to see how it can destroy relationships, especially the closest ones, as those who were once lovers become caregivers, and on occasion, targets.

Friday, 8 April 2016

A Day In Vancouver

This morning was tough, a difficult time getting out of bed, a difficult time getting onto the toilet, a difficult time while there, a difficult time getting back onto the bed, a difficult time getting dressed, a difficult time getting back into my wheelchair. Without help from Katherine, it would have been all but impossible. But here I am, mission complete, up and dressed. I am not sure that it was all worth it. Still, I'm ready to face the day.

We're in Vancouver. The plan for today was a visit from my daughter, Mary, and my grandchildren, Rose and Quinn. Unfortunately her morning was likely worse than mine; she is sick, and has two small children to care for. The life of a young Mom is anything but easy. So our day has been postponed; it will happen another time.

This leaves me without a plan, or with a ghost of a plan. I would like to take Katherine to the Granville Island Market today, to sit by the water and enjoy a cappucino, to browse the stalls, perhaps to pick up some bread or snacks. I would love to take her out to Horseshoe Bay and show her where I kept my boat in years gone by, perhaps to show her the boat itself if it is still there. I want to ask her what she would like to do; there are so many things to see in this jewel by the sea.

Of course dinner tonight is bespoke. Mom, Ray, Katherine and I will head to White Spot. It's a requirement for me when I come to BC. It's one of my favourite places for a burger and fries. Oh, and gravy too. Plus a milkshake. Nothing beats a White Spot shake. All in all, it's a sad thing that Mary can't make it, but we can still have a full and fun day.

Thursday, 7 April 2016

Looking Good

I am at my Mom's now, after a busy couple of days visiting with family and friends. It's exhausting for me, even on the days with shorter visits and a short drive. It's my third day on the road, and I need a break. Katherine is also paying the price for this adventure, having to get things for me, help me with transfers, move my body around when it gets sore or out of position.

It's hard to explain sometimes, the hidden nature of the effects of ALS on myself, and on those around me. When people see me, they often say "You're looking good." It reminds me of a scene I seem to remember from some old mobster movie, where the body of a gangster is in a coffin with a bunch of goddfella's looking down on him, having riddled him with bullets only a few days before. One of them says to the others "Hey, he don't look too bad."

When people see me, see my body, see me in the wheelchair, what they don't see is the exhaustion, the number of times Katherine has to help me with something, my inability to even lift my own feet up onto the couch, or sit myself up without a grab bar or safety rail. They don't see the stinging, pins and needles pain that plagues my swollen feet. They don't see the shrinkage in my arms, the loose skin covered by my shirt and pants. They don't see the constant feeling of tiredness.

This is not to criticize anyone for finding something positive to say. To most, I really do look good. I really don't look like I am slowly fading away. Add to that my verve and commitment to living life as much as I can while I am still here. I'll be a long time dead; I want to live what I've good while I've still got it.

My life, such as it is now, would be impossible without Katherine, without my family, without my friends. I many ways I don't care what they say. What I really care about is that they are here, with me, supporting me. I look good, that's true. I don't feel good, that's true. I'm still going at it; that's the most true of all.

Wednesday, 6 April 2016

Beauty Is Where You Find It

There is a thing that happens as you make your way from the plains of Alberta into the mountains of BC. It colours. The brown grass and grey dust from the windswept open prairie turn, as if by magic, to the verdant greens and towering timbers that line the narrow, curving highway taking you ever westward. It's Dorothy, leaving behind the dull screen of Kansas and waking up in the rich polychromasia that is this rugged landscape.

Here, in Kamloops, the flowers are in bloom, the grass is green, the streets are free of dust and gravel. The hillsides are still dry, yet their colours range from browns and gold to near pink in the shades of the sunlight. Spring is well underway, with lawns rich in grass and gardens rich in shades and colours beyond counting.

Of course all this beauty is not without its price. Coming through Kicking Horse pass from Alberta to BC is like switching another toggle, the one that starts the rain. While the skies were clear and blue as we left Calgary, no further than Lake Louise the clouds covered in and the slow drizzle for which BC is famous started. There is a reason for the green; it is the rain.

Alberta has its own beauty this way, with wide open skies and nary a cloud for so many days in the year. That brown grass will turn to green soon enough, and those gardens of Alberta will bloom with roses wild and domesticated. There will be a few days of rain, enough that it will seem strange to us. Then, spring will be in full bloom, just like it is here. It all happens, just a bit later in the year, and a bit shorter in the span.

Beauty is where you find it. It's everywhere if you want to see it. All you have to do is look for it. That's the wonderful thing about being on the road. It opens your eyes and reminds you that the world has so much variety, so much of wonder. It's here, and there too.

Tuesday, 5 April 2016

I Don't Believe It; I Can Still Drive!

We're going for a bit of a drive today. Nothing new, nothing we haven't seen before, simply headed west from Calgary up into the mountains. Yet still I will be in awe of those rough and rugged edges of the Rockies rising above us as we wander and weave, riding the twisted roads through the valleys and canyons below. I am ever impressed by these massive blocks of tortured stone, becoming increasing visible and striking as you head from the open plains of the east, through the foothills, then suddenly into their jaws.

I admit it. I love to drive. I am continually amazed that I still get to do this, that I can still drive long after my best before date. My 36 month prognosis came to a close more than four months ago. Yet in those four months I feel only a slight change, a limited loss. I know that it is happening. I know that ALS is progressive. I can feel the changes. But here I am, about to get into my giant steel chariot and once again wander the roads of Canada.

To get a sense of how surprised I am at where I am right now, you have to understand that I didn't pay my parking tickets in my first year after diagnosis. I thought I wouldn't be driving in year two, so what the hell. As it happens, that was a couple of years back and here I am still at the wheel. Then, as I did my driver's test, I discovered that I had to pay those tickets if I wanted my license. Again, this is a couple of years ago!

Each year I take my driving test. This is so the government is certain of my safety, and the safety of others on the road. After all, I have a degenerative neurological disease which affects my muscle strength. It makes sense that they would check me on a regular basis. The first year, I thought it would be the last year. The next year I was certain I wouldn't make it for more than six months. Now, I just don't know.

What I know for sure is this. Today I will get in my steel and glass deliverance machine and find the freedom of the open road. Today I will turn the wheel, hit the gas, and feel the power of the engine. Today I will go where I want, when I want. Today, it's a road trip day. Freedom!

Monday, 4 April 2016

A Confusing Disease

ALS is such a confusing disease. The complete loss of linkage between your body and your mind makes for a lot of conflict when your asked how you feel. Of course my standard response is "Okay", but the reality is that I am constantly in conflict about how I feel. My brain feels fine, my body varies. One part feels okay, another feels terrible. One part works, another doesn't. And then there is the conflict of physical exhaustion versus mental exhaustion.

This morning I got up and struggled to defeat my physical exhaustion. I'd had 10 hours of solid sleep, except for the required nocturnal micturations, plus I had a nap yesterday evening of a couple of hours. Yet my body fought to become functional. My mind, however, was ready and alert, all set for a busy day. My body felt like it could bare move when I tried to transfer to my wheelchair, yet my mind was racing ahead, thinking of a dozen different things.

I got into the bathroom and into the shower. There I noticed that I was feeling particularly solid in my trunk muscles, showing almost no wobble while sitting in the shower. I actually showered without holding on to the safety bars. Maybe my body isn't so tired. Maybe I'm actually going to have a good day!

Then came the transfer back onto my bed and the effort of getting dressed. By the time I was done this, my body needed a rest, but my mind was just fine. I was awake, and exhausted. Exercises followed, further tiring my body while giving my mind lots of time to think about things. When exercises were complete, my body wanted to sleep, but my mind wanted to get going with the day. So I forced myself into the transfer and wheeled into the kitchen.

Right now, as I write this entry, I could easily fall asleep. Not because I am tired, but because my body is tired. My mind is awake and active. The outcome of this is that I would go lie down, and while my body would be resting my mind would be wide awake and active. Bed, without sleep. And that's why this is such a confusing disease.

Sunday, 3 April 2016

Taking Time

I've had a terrific weekend so far. My friend Chris has been visiting from Vancouver. He was on his way to Toronto for business this week. Typically flights from Vancouver to Toronto stop in Calgary; it's a hub for most of western Canada, for both WestJet and Air Canada, our two major domestic air carriers. So rather than book a ticket on a non-stop, Chris booked a ticket with a plane change in Calgary, making the plane change a three day affair.

Chris got here on Friday evening. After the requisite stop to pick up some scotch, we spent Friday night talking late into the night. Oh, and having a bit of scotch too. Yesterday Chris helped with racking wine. Dion was over too, helping as well. Saturday night was a bit more sedate, with Chris heading to bed well before me. He had to get up this morning to catch a cab. Both he and my brother Adam have been kind enough to let me sleep in the mornings rather than asking me to take them to the airport.

I love it when friends and family come to visit, to stay with me for a few days. These extended times together allow for deeper, wider ranging discussions. It's not all about ALS. It's about our lives, our families, our work. Sometimes it's even about not talking at all, just taking an evening to hang out together and watch something on TV. Given the nature of my life and activity level, these times together are tremendously rewarding.

Chris left this morning at 8:45 AM. I know this because I had asked him to wake me up to say good-bye. After a few words, he left and I went back to sleep. That's the other thing about these longer visits. The constraints of time and timing are less impactful. It's more relaxed. There's more time to just be there. I'm glad he took that time. I appreciate it.

Saturday, 2 April 2016

Don't Fall Asleep While Going Pee

There are inherent dangers associated with going pee into a jug while lying in bed late at night. Most of them involve leakage or failed completion. On the other hand, there are occasional experiences which simply defy imagination. Last night, for example. I woke up sometime in the wee small hours of the morning desperately needing to pee. I reached out, grabbed my jug, rolled onto my side, and got everything into place and position. Then, nothing.

So I had to wait. My bladder does this to me now and again, demanding attention then withholding results, as if to demonstrate that it, too, can make my life miserable. So I waited, and waited. At some point in this waiting process, I dozed off, my hands and body relaxing. It was in that instant that my bladder decided to some to life, producing what it had so recently held back. Unfortunately, in dozing off, my hands had loosened their grip and I promptly peed all over my leg.

I was fast enough in waking to stop a total dam break disaster. I reasserted my grip and aim. I swore, waking Katherine in the process. She leaped out of bed, grabbing something from the laundry hamper to act as a towel, to dry my damp leg off quickly, making sure that there was no mess left from my failed nocturnal activities. I finished what I had to do, and drifted back into slumber afterwards. It was just another thing in my life.

Accidents happen to all of us. Into every life, difficulties like this one will creep. Everyone I know has a story somewhat like this. The only real difference is that I am the only one I know who pees into a jug at night, and during the day too, making the possibility for accidents so much higher than normal. I can laugh at this; it's not the end of the world. I am grateful that Katherine was there to help me, as she so often is. But still, I really do wish I could just get out of bed like most people, and go pee like normal.

Friday, 1 April 2016

I Don't Like April Fool's Day

I am not a fan of April Fool's Day. I am not a fan of silly pranks, especially those designed to embarrass or humiliate people. I don't like things which waste what precious time I have here on Earth, time which I could use for doing something which enriches my life, which adds to the value of the world around me.

It's not that I am humourless; I love a good joke, a smart pun. I love wit and intelligence. The problem is that so many April Fool's jokes clearly lack both with and intelligence. I see no point in sending a new worker off to get a rope handled shovel, or to bring back a bucket of steam. I see no point in assigning a student to do research work on a non-existent historical figure. Okay, perhaps I am a bit humourless, perhaps I am a bit curmudgeonly.

The real issue I have is the embarrassment part. There are those who feel that humour can only be had at others expense, that funny is when it happens to someone else. I have always felt that the best target for humour should be oneself. If I am to create a laugh, better that it be at my own expense, in emotions which I can afford, rather than at the expense of someone else, hurting them, embarrassing them.

That's my real problem with April Fool's Day. The whole intent is to make someone else look the fool, to get a laugh at someone else's expense. I think that is inherently cruel. Unfortunately we are an inherently cruel species, it seems. The idea of April Fool's Day goes back hundreds and thousands of years. There was even the festival of Hilaria in ancient Rome, and India has the Holi festival.

I don't find it funny to make fun of others. If you want to be really funny, have a laugh at your own expense. Lighten someone else's load by letting them laugh, not by making them the butt of the joke. If you truly want to do April Fool's, make the joke on yourself.