Tired Again, And Again, And Again

I'm tired. I start so many of my days like this. I felt pretty good when I woke up, certainly ready for my shower and exercises. Everything in the bathroom went according to plan; even my shower was warm and uneventful. When I lay down for exercises, I felt good, ready to go. Then we did exercises.

It's hard to understand how exercises where I do so little can leave me so tired. The first part, my arm exercises, are certainly mine to do. But my leg exercises are performed by the Home Care Aide. I am simply a ride-along, a passenger in the process. I do only a few minor things during the Range of Motion exercises for my legs, things like holding onto a leg while the HCA adjusts the other leg; nothing heavy, nothing particularly difficult.

Yet when I am done, I am exhausted. I make the difficult transfer to my wheelchair so the HCA can make my bed and tidy up my bedroom. I come out to the kitchen table and think to myself, "I should get myself a cup of coffee." I don't do it. I just sit in my wheelchair, my eyelids getting heavier and heavier by the minute, the sense of drowsy spreading throughout my body.

How is it that I can be so tired? I get more sleep than anyone I know, except for other PALS. I do virtually no physical activity, or at least no strenuous physical activity. I don't walk, step, climb or run. I don't push, pull or lift beyond the smallest of things. But here I am, after having someone else do all that work for me, ready to go back to bed, ready for another two or three or four hours of sleep.

If there is anything truly unfair about this disease, then this is it; that my body demands so much sleep and offers so little in return. I am up to 12 hours per day minimum, often sleeping more than that, particularly if you count the hours I fall asleep on the couch watching television. It's getting worse, this exhaustion. Soon even the modest efforts I make will be too much. I will be too tired, again.

It Will All Happen

It was another one of those disastrous starts to my day today, this one involving things I do not wish to discuss, but requiring a full change of bed linens, including laundering the soiled linens using bleach. All of this happened at around 9:00 AM, meaning I had to get up and shower myself clean far earlier than I usually do. After cleaning up all the target constituents of this construction, I crawled back onto my stripped bed to get dressed.

But I didn't.

The process of the early morning activities had left me exhausted. I had gathered clean clothes; they lay beside me, ready for enrobement. Yet as I sat I slumped over. Now I was laying down. Since I was laying down, it made eminent sense for me to allow the perpetual spectre of sleep to descend upon me once again. I slept once again from about 11:00 to 1:14 precisely, when Dan and Anisa announced their arrival to help with some wine making tasks.

I had completely forgotten about them in my exhaustion. When Anisa rang the door, I asked "Who is this?" She said "Anisa and Dan", to which I immediately responded "Oh shit, it's Sunday!" I understand Dan got quite a laugh at this. I, however, was completely discombobulated, shaking with the exertion and adrenaline of this startling reminder of my day. I lay there, naked as God made me, wondering how on earth I would be dressed by the time they made it upstairs.

Given this lost cause, I simply stayed under the sheet and asked Dan to close the door when he came in. He was still smiling at my disarray. While they did the preparation work for the wine, I got dressed, at my usual speed. By the time I was ready to be involved, Dan and Anisa had things well underway. Maybe I should have just stayed in bed. It would have been easier.

The wine making today was a part of a lengthy process with an hour wait between each of the three parts. I took this time to do some laundry and the two of them even pushed me over the street to Safeway so I could get a few groceries. You see, I'm having guests for dinner tonight too.

All of this might seem a lot for someone in my position to be doing. What you might also see is that Dan and Anisa are here for wine making. For dinner, Anne and David will be coming to help. In addition Anisa has already offered to peel potatoes. So while I may have a lot to do, and while my day may have gotten off to a shitty start, I'm in good hands. I can relax. It will all happen.

Interrupted Morning

It was not a stellar beginning to my day. It had the capacity to be one, it started out looking good. Then it went south one me, turning from gold to stone in just a few moments. I get used to this kind of thing, the turning sideways of events, leaving me wet and unhappy, needing a complete change even before I had finished getting dressed.

The morning started out so well. I was able to get into my commode chair, well padded with the new cushion which was delivered yesterday by my ALS Society worker. The chair continues to fit nicely over my bidet toilet, so going to the bathroom worked out well. I managed to get myself nice and clean, brushed my teeth, cleaned my jug, and headed back to my bed to get dressed.

The one thing which didn't happen, which often doesn't happen, was going pee. When I sit on the toilet, the mechanics of urinating mean that the pathway is often bent or blocked. Since I can't adjust my trunk or lower body, I just have to try my best and hope. This morning there was no hope, no response, just an empty jug. I actually have two jugs, the small one I use in the bathroom and the larger one which goes where I go.

With the cushion on my commode chair the grade from chair to bed is almost level. I grabbed a shirt from the laundry to use as a landing pad, along with a smaller shirt to use as a sliding surface on the transfer board. Then I easily made the transfer. I grabbed my clothes from the dresser and to a breather. At that point I noticed a minor discomfort of bladder pressure. Also at that point I realized I had left both my jugs in the bathroom. Any release would have to wait until after I was dressed. I finished putting on my underwear and started with my compression socks.

I had gotten one sock on when my bladder announced that it had no intention of waiting for me to finish dressing. It was ready now. It started without me. Now, transferring to the wheelchair means those muscles which would once retain were not fully free to let go. I transferred, and the floodgates opened. I headed for the bathroom, sitting on a golden pond. I finished what had to be finished, then headed back to the bedroom, towels and washcloths in hand.

After transferring onto my bed, using a large towel as a landing pad, I had to clean myself up. I did so, after stripping off my wet underwear. Then I started all over again, starting to dress for the second time this morning. My day still has potential; it's just the interruption which is really annoying.

A Tired Spirit

I'm late in writing today. I was late in getting out of bed today; I stayed up late last night. I even cancelled my Home Care visit for today. This is not a problem with physical energy, although my level of physical energy is always low. This is a problem with emotional energy, psychological energy. This is a problem with my motivation, my willingness and desire to do anything. I'm getting really tired that way, really tired of trying to do, of not being able to do, of losing ability.

There are three different kinds of energy at play within me. The most obvious is my physical energy, sapping away as it is, collapsing under the physical strain of all the additional effort I am compelled to put into life because of ALS. Then there is my mental energy. I'm lucky in some ways that my mental energy, my intellect, my thoughts are still alive and bright. My brain is still alive and vibrant. Then there is my emotional energy, that combination of physical and mental which takes a real rollercoaster, me on board, for a wild up and down ride on a regular basis.

These last few weeks, and perhaps the last few months, my emotional energy has been failing me more and more. Last night, after Dan and Anisa went home, I transferred onto my couch using my sling, keeping the sling about me for a quick getaway when I was ready for bed. Then I sat there, able but unwilling to move. I just wanted to not move, to not put out the energy, no matter how slight, to go to bed, to get undressed, to make the transfers.

It's been like that several times lately, where I am trapped by inertia, an object at rest wanting to stay at rest. If I am alone, I don't want to make meals. If I am on the couch, I don't want to get off, not even to pee. If I am in bed, I want to stay there, comfortable, warm, not feeling the stress and pain of sitting in my wheelchair. Laying in bed is best; I want to do that more and more these days.

I don't know if this loss of emotional energy, this lack of motivation to do anything will continue. My hope is that the rollercoaster will go uphill soon, taking me out of this valley of shadows, lifting me sunwards, picking up my spirits along the way. For now I just have to accept that feeling down, really down, feeling tired in my spirit, is just another part of ALS.

Observations

Some days there are too many things going on in my life to share, too many changes to talk about. There are so many good and bad things happening these days, each of them providing a view into my life, each of them very telling as to what it is like to live with ALS. Some are funny, some are sad, some are difficult; each of these could make up a blog post all on its own. So today, I am doing the short form; simple observations about a few things that have happened in the last 24 hours.

First off, I had a terrible night last night, one of the worst I have had in a very long time. I did not sleep well, my night a continuing collection of susurration within the guise of sleep. I had bad dreams, anxiety inducing dreams, so vivid I thought they were real, so impactful that the anxiety stayed with me after I awoke. My mind had trouble determining if the dream was a reality, so much so that I was shaking, quivering with whatever muscles could quiver, ready to cry or scream or something. Then my conscious mind cut in and, after a while, things settled down.

Then, things got better. The other day my commode chair broke; a bearing slid out of its housing causing the left wheel to fall off. Always the left side first, for me and everything about me with ALS. I wonder why? Regardless, the ALS Society replaced the chair yesterday. Lo and behold, this new chair is just a bit higher than my old commode chair, and, as such, fits neatly over the bidet seat of my toilet. Once again I can use the Toto Washlet seat! It is such a success when one thing solves two problems. I tried it this morning and it works just fine, except for a little sidesplash due to the inexact fit of one over the other. This is not an issue, not even a problem.

Third, this reminded me of how much I appreciate the ALS Society of Alberta, their many volunteers and the terrific staff. I don't say it as much as I should here in my blog, but without them my life would be a disaster. I have learned to make the Society my first call whenever I have a problem. They provide me with equipment I could not normally afford, with emotional support when I need it, and with tons of useful ideas about how to live with ALS.

Fourth, today I have friends coming over to do wine with me. I am going to make ribs, starting almost right now. I sent out a note the other day asking my group of friends if they would help me do a "deep clean" of my apartment in late November. Already some have replied offering help, not just on one day of the weekend, but on both days.

I am very fortunate. While I have some very bad days and nights, I have a great support network around me, wonderful family who help me both financially and emotionally, the ALS Society standing by to provide me with help and assistance, and so much more. Oh, and I figured out how to do the measurement, so that's looked after too!

Texas Condoms

I'm tired of peeing on myself. Please note, I did not say "peeing myself"; I said "peeing _on_ myself". It's an important distinction. I don't struggle with incontinence per se. I struggle with issues associated with lack of containment or misdirection of my urine stream. This struggle occurs in three different ways: leaking, shaking and what I call backwash or spillage.

Leaking is easy to deal with. It happens to most men my age. I finish going pee. Then, as I get ready to pack away the gear, my bladder gives me a little "late in the game" surprise. Usually I am ready for this, but on a regular basis this surprise comes after everything is tucked away, leaving me with a nice damp area that stays that way for a while.

The greater issue is what I call "advance leakage". This happens because I never really empty my bladder completely. I can't; it's part of life in the chair. So there is always a little something for my bladder to give up when I am least prepared for it. Sitting in the chair tends to squish that little bag of pee in my belly, most often compressing the outward bound passage so I don't notice the requirement. Then, when I move my body, most often by transfer, my bladder says "FREEDOM", and announces its quest for release by allowing what can either be a modest expression or a full blown stream. Either way, it's messy and annoying.

Then there is the shaking. This happens all the time, but is only a problem when I am not paying attention. You might think I really should pay attention when I pee. Then again, have you ever seen the men's washroom in a pub? We get easily distracted. I've even been know to fall asleep while laying in bed on my side, peeing into my jug. What mostly happens, though, is my hands shake and sometimes my aim goes awry. I miss the jug, inevitably hitting my pants and hands somehow.

The worst thing, however, is the spillage or backwash. This happens when I am seated in my Phoang chair, or my couch, or in the truck seat. In these chairs, the seating position sets my rear far lower than my front, meaning I have to pee uphill, not something easily accomplished at times. Worse than that, my jug has to point downhill. If the angle is not just perfect, the contents I put in happily run back out all over my pants. This happens fairly regularly. It's annoying as hell.

So I have decided to deal with this through something called an external male catheter, also known as a condom catheter, and even referred to, at times, as a Texas Condom. This is an external covering for the penis which drains into a bag or container. It is attached by way of adhesive and stays in place through most activities.

As you can guess, this would make long drives, sitting on the couch, or sitting in my Phoang chair much less of a urinary struggle. It would mean cleaner, dryer pants for longer periods of time. In general, it's a win for me. The problem is that men's penises, like women's breasts, are all different sizes. Therefore, before you purchase this item you must be measured to ensure a proper fit. Women are used to this process; they buy bras. Men are not used to this process. In fact most of us are rather frightened about measurements. They lead to competition and someone else is always bigger. We are forever insecure about our hidden asset.

What's more, there is a specific device for this measurement, a cardboard template if you will, with various semi-circular sizes cut into it. The object is to see which one is your size. The supplier mailed me five of these things. Did they perhaps think I was going to make this some kind of competition with four of my best friends sitting around measuring ourselves to see who really is the biggest?

On top of quantity, there is the very sensitively worded note from someone whose name is illegible. It says, and I quote exactly, "Please use this to measure, and let us know what size you need." What am I supposed to measure? Is there a specific spot? Penises can change size and shape depending on temperature, relaxation, and, er, stimulation levels. I am pretty sure I can figure this out, but this is an area where some degree of direction might be in order.

Finally there is the act of measuring. You see, when I sit in my chair all of the important parts are neatly squished away, making the object in question difficult to extract to any reasonable position for measurement. If I attempt to measure while laying down, I find myself unable to lift my head or body well enough to see the actual device making it difficult to position and read.

If I were healthy and had legs that worked, I would simply stand up, grab the member in question, and measure. I can't do that. I'm not yet sure what I will do, but I could use a hand, preferably a female hand. I'm not going to ask any of my male friends to do this; that's just wierd. Nor is this a measurement I want my HCA, Micheal, to be doing. He's black, and that puts me at a disadvantage immediately. He see me naked already; I don't need to make things worse.

I'll have to work this out. Volunteers, perhaps?

Reality Bites

I was reading in one of the ALS Facebook groups this morning as I lay in bed building the energy to get up. There was a post from a woman whose husband had been diagnosed just 10 months ago, going from walking to complete paralysis in that time. He is near death and she wants to know why he got this kind of ALS, and how other people have lived longer. There were no answers, at least none which could help her.

As I read her plaintive post, I found myself thinking he was one of the lucky ones. He got this dreaded disease and it has taken him in less than a year. No need for expensive wheelchairs; that's not enough time to even order one. No need for expensive house renovations; I suspect he went onto a commode fairly quickly after losing his legs. No need to pay the cost of living; he was going to die soon. I would happily have traded him places.

The long duration is a curse, both physically and financially. For each of you who says I should be happy to be alive, try living my life these days. Yesterday, for example, I posted about having $8.76 in my bank account. A friend almost immediately emailed me $100, yet I did not take that money and go out. I did not spend it on doing something fun. I have to save that money so I can pay my bills in November; I've already spent my October budget.

To help make it clearer, I've inserted a spreadsheet with my various budget options below.

What all of these numbers really mean is that last year, before my expiry date, I was doing okay, living off of my savings, having a good time, fully prepared to die on schedule. When that didn't happen, I panicked, asking my brother for money. He helped, but also reminded me that I had to solve this problem. He has helped since too, helping me get past those months with three mortgage payments.

So I talked to my condo board chair about not paying my condo fees. She said "Don't worry about it. We will ignore it as long as we can." Once again, both of us thought that it might not be all that long. So I lived each month with a shortfall of almost nothing to about $250. Help from family, friends, and the generous people who click donate on my blog meant I could get by. I wouldn't have a ton of money, but as I get increasingly ill, I don't need a ton of money. I could, however, afford the odd luxury, like a wine kit, or treat, like going to Murray's wedding.

However things at my condo building have changed. There are two other people not paying their fees. In order to go after them, the board also has to go after me. They are already in the process of registering an "attachment", a lien which will allow them to get their money. This attachment will be reported to my mortgage holder, ScotiaBank, who then have the option to use it as cause to foreclose. I keep hoping I will die before all of this happens, but to forestall the foreclosure, I have started making my condo fee payments again.

These days I must live on a skinny budget as well as paying my condo fees. It means that each and every month I will be $425 short. On months with a third mortgage payment, I will be $900 short. 

I know I have to ask for help with this. It is humiliating, embarrassing, frightening. I will never be sure what the next month looks like, nor the one after that. This is no different a situation than many others face, only I face it while dealing with ALS, that's all. I'm angry, angry that I have lived too long, that I'm beating my prognosis. I truly wish I had died on schedule. It would take away so much of this stress. Yet I am still hoping, still begging.

When the initial discussions began around Medical Assistance In Dying, as they now call it here in Alberta, there was a brief discussion on how poverty might impact access to assisted death, or willingness to choose assisted death. That is where I am right now. It would be easier to die, easier to end my struggle, than it is to deal with this stress. Last night I took out the pills and counted them, wondering how many it would take. I probably have enough, but I didn't take them. After all, thanks to the kindness of others, I have enough money for November. That will take me to fours years post diagnosis.

I always knew the end of my life would be shitty. It's ALS, after all. It is progressing in me, daily. It is moving faster than it has in a while. I'm done from the chest down, with the exception, oddly enough, of my diaphragm. I can still breath, although I am running out of breath more often. I can still eat, drink and make merry, unless it includes walking or standing or even sitting up straight. I still have some "quality of life".

But last night, sober as a judge, I sat there and wondered, pills beside me, counted out. I wondered if all this is really worth it, knowing how it was going to end no matter. I hate having ALS. I hate being broke. I hate not having the strength or energy to earn a living. I hate feeling like I have failed, at life, financially, as a parent, at everything. Shorter would have been a lot better. With any luck it won't matter soon enough. Until then, I am forced to ask for charity. What kind of man have I become?

$8.76

$8.76

That's the total in my bank account this morning. I suppose I should be happy that I am not in the negative numbers with my bank, the way I am with my condo fees or my credit cards. I am happy enough to ignore my credit cards, but my condo fees, as of this month, will have to be paid. That's just the way it is.

$8.76. It's not the only money I have. Thanks to the generosity of supporters I have almost $400 in my PayPal donation account. This is my November money, not my October money. That $400 is being transferred to my bank account this week because the November bills have already started rolling in, things like my cell phone bill, my Telus bill, my electrical bill, they all come in before month end with the admonition that they are due on such and such date in November and payment on time will avoid interest charges. I can cover those bills, and my condo fees, and my groceries for November but I will do that in November, not now. It's only October; I've spent my October budget.

$8.76 is just enough money to cover the cost of one beer if I wanted to go to Trivia at Swan's tonight. But then I also need the $5,00 cash for the entry fee. Maybe I can scrounge around in my truck and pouch and around my apartment to see if there are a couple of Toonies floating around, that's the Canadian $2.00 coin. If I can find that $5.00, I might go out tonight.

$8.76 is also enough to cover a carton of milk, one that I can pick up, even one that is heavier than I can pick up. It might also cover a pint of cream, just in case I want to make another pumpkin pie. I have the dough in the fridge, ready to roll. I have the other ingredients in my cupboard. Making pie is a fun thing to do. It would most certainly fill my day and evening.

$8.76. I could just leave it there. I have to do laundry today. I have plenty of food in the fridge, plenty of wine in the rack, plenty of laundry to be done. I have laundry soap. The laundry is shared in my building but there is no charge. It's part of those pesky condo fees.

$8.76 is enough to get through this week. I'm okay. I'm not worried. Truth be told, I've already decided to steal $30.00 from my November budget for bit of entertainment this week. It will be in my bank account as soon as my November money is transferred from PayPay, probably on Wednesday. I have a full tank of gas in my truck; that should last for the month of November. I still have that $50 gift card for The Keg that Tonny gave me for my birthday. I'm not poor. I'm not even broke. I'm just making budget decisions like never before.

Soon it will be the end of October. I will begin spending my November budget, albeit a few days early.Then, suddenly, it will be the third week of November and I will be worrying about my December budget. Then January, then February, and on and on. This is not an ALS problem; this is a life problem. Perhaps I am, in an odd way, fortunate. I know that this will end fairly soon. I also know that as time goes by, I will be less able to spend. I will have fewer needs. Then, one day, I will need nothing. That is an ALS certainty.

Drunken Jeans

My friends Kay and Walter came over last night. I haven't seen them in quite a while; they have very busy lives and seem to be working non-stop these days. It was good to have them over. As soon as they arrived, Kay reminded me that she didn't drink while Walter reminded me that he did, that he hadn't for a while, and that he would really like some wine. I pointed him to the wine rack where he picked a nice Riesling.

That was the beginning of a big night, at least for me and Walter. I felt sorry for Kay that she had to sit through it, but she assured me she was fine, and that Walter rarely had nights like this.

We started with a couple or three bottles of wine between the two of us. Then we got to talking about Cuba, so we took out the last of my Cuban White Rum and polished it off, served straight over ice. Then I mentioned I had made my own batch of beer, so of course we had to do tasting, just one of my large bottles, the ones which serve two. When that ran out, I mentioned that I had this really nice Irish Whiskey called "Writer's Tears", which of course could not be left out of the evening.

Along the way we had a terrific lasagna dinner, one of my favourite meals to make. We ate, we drank. We drank, we ate. Then, all of a sudden, it was 11:00 PM. Both Walter and I were fading under the efforts of our consumption, neither of us worthy of sobriety. I was drunk. I admit it. It happens every once in a while. Not too often, not on a regular basis.

I learned something last night. Getting dressed when you are paralyzed from the chest down can be a real challenge. Getting undressed while inebriated and paralyzed from the chest down is a near impossibility. I have enough trouble sitting up while sober. It would appear that I cannot sit up at all while drunk. Getting my jeans past my knees was difficult. Getting them over my feet and off was impossible, at least right then. So I just fell asleep, a failed soldier collapsing on the battlefield of insobriety, jeans somewhere halfway off, shirt and socks still on.

I awoke at 7:00 AM and realized my state of semi-dress. By this time I had regained sufficient coordination to remove my pants and shirt. Compression socks yet defeated me, so they stayed on and remain with me still. I returned to near passed out slumber, fitfully sleeping on and off for the next several hours. Finally, under pressure of someone coming over for coffee, I managed to recover at about 2:00 PM today.

What did I learn from this exercise? Thankfully, absolutely nothing. I am, and have for a long time been, fully aware of what alcohol does to my coordination. I am, and have been for some time now, fully aware of what ALS is doing to my coordination. My semi-robed state last night was no surprise to me. What is perhaps a surprise was my complete continence last night, and complete lack of jug accidents. I am not sure why, but being sober does not help my aim and control, while being drunk does not seem to hurt it. Perhaps that is a lesson. I don't know.

Forcing The Toothpaste

It might be time for another toilet tale. These are almost always funny, and if not funny they certainly present a real view of what it is like to deal with ALS, the wheelchair, and life in general. So...

Yesterday my HCA, Micheal, did his usual job of helping me with my morning routine then taking me through my Range of Motion exercises. His last tasks were to make my bed, pull the blinds down, and re-attach the sling to my lift. My bed got made. The reason he forgot the other two is that they are new to the routine, and he was already 20 minutes late. I had taken a long time in the toilet and shower.

This morning, when I finally decided I had the strength to get out of bed, I saw that the commode chair was in its usual place, across the room beside my closet doors. However there was nobody to get it for me. In order to use the commode chair, I would have to transfer to my wheelchair, move the commode chair to where I could reach it, transfer back onto the bed, then transfer onto the commode chair.

I would have used the sling but it too was across the room, Micheal having forgotten to attach it to the lift system. I am guilty here too. I could have attached it myself, but I also forgot and went to bed without it. Mea culpa. So I decided to try doing the transfer to and from the toilet, using my bidet seat and regular toilet rather than the commode chair.

So off to the bathroom I rolled, confident in my ability to fulfill this task. Alas I was to discover that, as usual, getting on to the toilet was doable, but getting back getting back to my wheelchair had become pretty much impossible. I was able to get myself halfway onto the chair, holding myself in place by leaning way back, spreading my body across the chair and back to ensure I did not slide to the floor. In this manner and position, I rolled back into my bedroom and, with numerous challenges and skidmarks, managed to drag myself onto my bed.

After all of this excitement I was exhausted. I needed a rest. So I stopped for a bit and wondered to myself why I even bother with all of this. Why can't I just let it go? Of course, I can't, It's not in my nature to stop trying. So, having rested, I dressed and finally got on with my day.

Lessons learned? No more toilet, no matter what the circumstances. Use the sling, and if it is not set up, set it up. Quit trying to prove to myself that I can do what I used to do. Get used to the idea that I have ALS, that I am getting weaker, and that my life has been changed permanently. I cannot force this toothpaste back into the tube.

19 Hours Of Sleep

I'm up. I'm almost awake, sleep still tugging at me, encouraging me to go back to bed. I've needed a lot of sleep these days. Yesterday I got up at 11:00 AM, did my morning routine, met with my Home Care Nurse, and by 4:00 PM I needed a nap. That nap turned into a four hour sleep, after which I decided just to stay in bed and call it a night. I dozed on and off until about 11:00 PM, then slept solidly until 10:00 AM this morning. So all in all, probably slept about 18 or 19 hours yesterday. And here I am, still wanting sleep this morning.

The exhaustion that goes with ALS is pervasive and persistent. I never really get ahead of it, regardless of how much I sleep or how little I do. It has a lot to do with the increasing weakness with which I live. When even the smallest of things becomes difficult, when weakened muscles are forced to work harder to accomplish the ordinary, you just get tired more quickly. The exhaustion of ALS is no mystery; it happens because I work so hard to do that which once was easy.

This morning is a great example. While I could probably sleep for several more hours right now, I had to get up. I had Range of Motion exercises. The Home Care Aide was here to make sure my joints don't freeze and my muscles remain flexible even though they are dead. Those exercises, even though I am aided through them, wear me out. They are simple exercises, with someone else bearing more than half the load, yet when I am done with them I need a rest.

Then there was the incident with my breakfast cereal. I forgot to eat yesterday, so I am hungry this morning. I don't feel like cooking nor am I up for prosciutto and Swiss cheese. So Alphabits it is. I grabbed the brand new box off of the top of my freezer which, thankfully, I can still reach. I noticed the box was unopened, and my spirits fell a notch. I knew it would be tough to open, and it was. But I got there, managing to find the crack in the sealed top.

Inside the box I was presented with a thoroughly sealed wax package, the kind breakfast cereal comes in. I tried to tear open the pouring end, and failed. I am not strong enough to simply rip it open. That's new, and unfortunate. So I tried opening it from the middle of the package, knowing full well that it would tear downward instead of along the seal. It did, so I took the open tear and used that to continue separating the sealed part, right until I got to the end where I could make a pouring spout.

This was not a major effort. There are very few things in my day, in most anyone's day, which are major efforts. Yet this minor effort took much more out of me that it would most other people. Add a few more of these minor efforts and it looks like a real workout. That's why I am exhausted all the time. Dressing is a marathon race, going to the toilet is like pushing a broken lawnmower, reaching up and down takes all I've got. And now, I want to get back into bed already, despite almost 19 hours of sleep.

"Can I Pray For You?"

I have to be very careful here. Polite conversation avoids the discussion of religion, politics, and money. Yet here I am, about to plow into this very difficult soil, the place with rocks and roots that go back a long way. So I am going to start with this, right up front. No, you cannot pray for me.

That may sound ungracious, even unkind. But it isn't. I get asked this question sometimes; more often I get people saying that they are praying for me. Don't! You're doing this for yourself, not for me. It is, in fact, a reality of the teachings of Christ himself. If you are a Christian, not that there is anything wrong with that, one assumes you will have read the New Testament.

There, in Matthew 6 versus 5 - 8, in any number of translations all sharing the same intent,  it says “And when you pray, you must not be like the hypocrites. For they love to stand and pray in the synagogues and at the street corners, that they may be seen by others. Truly, I say to you, they have received their reward. But when you pray, go into your room and shut the door and pray to your Father who is in secret. And your Father who sees in secret will reward you. “And when you pray, do not heap up empty phrases as the Gentiles do, for they think that they will be heard for their many words. Do not be like them, for your Father knows what you need before you ask him."

If you say to me, "Can I pray for you?" or tell me "I'm praying for you.", you are saying to me that your prayers must be seen by me, acknowledged by me, your actions approved by me. This, in my mind, makes you one of the hypocrites, praying not for me, but telling me that you have a public and well known connection to God more powerful that mine. It makes the act of prayer more about you than anything else.

It's insulting, just as the assumption that you can lay hands on me and start that praying immediately, even without my permission. Somehow, once again, you are assuming that your link to God is more powerful than mine, or you are assuming that I am praying for the same things you are. Perhaps I don't want to pray for healing. Perhaps I don't pray for a miracle. Perhaps I pray for the will of God to be fulfilled as it should, just as Jesus says in Matthew 6:8.

Asking if you can pray for me, or even telling me you are praying for me means you are focused more on yourself than you are on me. It says to me that you need me to know this, as if somehow my approbation and gratitude are important to you. Or is that just it? You won't pray for me in secret because what's the point? If I don't know about it, where is your benefit? I see this selfishness on a regular basis, the correlation between prayer and doing nothing. Those who say they are praying for me are most likely to do nothing practical to help. The minute I hear that phrase I know there will likely be no real help forthcoming.

Personally I think that any kind of "directed" prayer is simply the human ego in practice, a demonstration of our belief that we can impact the unfolding of time and space through meaningless words. Praying for me also give you the feeling that you are doing something for me without actually having to do anything for me. It's inaction through prayer. It gets you off the hook for taking action on the true lessons of Christ, the lessons of caring, humility, giving, selflessness and so many others.

So no, I don't want you to pray for me. Pray for what you wish, but leave me off that list. Instead, do something, if not for me then for someone else who has ALS, or cancer, or MS, or MD, or any one of the many diseases which afflict humankind. Telling me that your thoughts and prayers are with me is really telling me you can't or won't do anything, not just for me but for anyone on your "prayer list".

Put down that list. Pick up your car keys, or walk, or take a bus. Go and visit someone who needs a visit. Go and serve someone in a care home. Put down that list. Pick up your keyboard and make a donation to a cause. Put down that list. Pick up the burden of service. Get active, and stop wasting my time with stupid questions.

What Can I Do To Help You?

"What can I do to help you?"

I have to be honest. That question annoys the hell out of me. I get asked it a lot, and people seem to get offended when I tell them they can support me financially, as if helping me economically was somehow wrong. Those who are close to me know full well that I need help, both financially and physically. Without some direct help from them, things would get pretty bleak for me.

Of course financial help is not the only way. Another way, just as important, and just as costly, is to help me by spending time with me, by doing things with me, by taking me out for lunch or out for a movie, by sitting on the couch with me watching something on Netflix or a game on TV. I know that time is money, and many people have lives which are just too busy or challenging to spend time with me. Some people are too far away, or don't have the transportation they need. Finding time to spend with a sick person, and it;s often not a lot of fun; there are so many other demands in your day that taking time for a visit like this would really jam things up.

Yet when people ask "What can I do?", they seem surprised at my two answers, surprised at the specific request, surprised that somehow I might need something they have, something they can offer. I think in most cases people don't really want to help; they want absolution for not helping. They want me to say "There is nothing you can do." They want to hear me tell them I'm fine, that I need for nothing, that they need not worry themselves about me. They want to feel like they are off the hook from their guilt, free to move on in the knowledge that I said "no thanks."

Those who truly want to help me don't even ask that question; they already know how to help me. I've been fairly clear about where I need help. There are so many things you can do to help me, and some of you are doing so much already. As my life and situation worsens, there are those of you who consistently help me, without asking how. You step up, and you make my life better.

It doesn't take much to see the changes in my life thanks to ALS. I used to have a well paid career. I used to get out socially at least three nights a week. I used to cook terrific meals for myself and my guests. I used to... I used to... I used to... You see, that's the problem. So many things I once did I can no longer do, thanks to ALS, thanks to finances, thanks to being alone. These days, I need help finding a reason to live. I need help to escape my loneliness. I need help to escape the four walls of my apartment.

If you want the best example of true friendship and help, look at what David did last weekend. He took three days out of his life to drive me to Saskatoon. He took time off work so we could leave early in the afternoon. He spent his own time alone while I was with friends at the wedding. He spent his own money to buy us gas and lunches on the road. David made the real commitment of both his time and his money to help me. Others have done this for me too, family and friends. This is a true gift.

Other of my friends do the same. They don't just buy groceries for me; they take me grocery shopping and pick up the tab. They don't just come to eat with me; they bring food and share the joy of cooking it with me. They share the wine making process with me, and then let me share in the wine. Those people are helping. This is another true gift.

Then there are the distant supporters, the people who take the time to click on the Donate button on my blog. These people are helping me in the most tangible way they can. Distance separates them from me, yet they contribute in practical terms. Their support means I can get my own wine kits now and again, or I can go to Trivia Nights on Mondays, or I can save up and make a weekend road trip to Saskatoon. Those people are helping me.

Giving should hurt, just a little. If you help someone and it is painless to you, then what have you really done? Well, at least you've done more than those who ask "What can I do to help you?", and then do nothing. If you are not willing to feel the pain of truly helping me, then don't ask. The people who truly help in my life haven't had to ask either. They know how they can help me.

Days Like Today

I'm finally out of bed. Actually I got out of bed a few hours ago to use the toilet. I took that opportunity to change my underwear and take my pills. Then, as soon as I stopped for a moment, I slumped back down on my bed and returned once again to sleep, or some semblance thereof. I was just tired, too tired to bother getting out of bed.

It's a struggle for me, getting past the whole "why bother" question. Today I have nothing scheduled; no appointments, no chores, no guests, no tasks. So there really is no need for me to get out of bed. I need nothing done. I need no food prepared. Home Care came in this morning and rather than let them get my up and dressed, I just asked for them to tidy the dishes and let me sleep.

Purpose in life is so important. Goals for each day are at the core of my own existence. I already feel like I have no purpose so much of the time. I try to make sure I have goals for any given day, but then I come across days like today where everything I need done is done, unless I create something artificially. I guess I could have gone across the street today and gotten the nosepad on my glasses fixed. I seems neither urgent nor important, so why bother? Once again, that question.

I'm alone so much. I spend so much time reading, looking out the window, watching TV; all activities which require little energy from me, either emotional or physical. I have more energy when I am around others, when there are people in my life. Yet I have so little reason to do anything social, much less the money to do it.

So today, staying in bed seemed like the best option. I did it for as long as I could. Soon I will return to bed, having restored much of the energy I lost on the weekend. Tomorrow I will have company for dinner, so I have a goal for the day, a reason to arise. Tomorrow will be different; at least I hope it will. I hate days like today.

The Terror Of ALS

I have so many things on my mind that I would like to write about today. I wanted to let people know how tired I am after my weekend road trip to Saskatoon, and how much every bit of my exhaustion is worth it. I wanted to share some thoughts on people who ask me how they can help me, or if they can pray for me; trust me, I have thoughts on that. I also wanted to write about some significant changes that a coming soon in my financial life; short story, I have to start paying my condo fees again.

Instead, I want to write about a carton of milk. Today I went to lift a full two litre carton of milk out of my fridge. For my American friends, that's two quarts, roughly. I went to lift up the carton and was surprised at how heavy it felt. I've never noticed before how much a carton of milk weighs. They were always easy to lift before. Now, not so much.

This is the way it happens, how I come to realize I am getting weaker. There is no test, no daily grip function testing machine. There is no regular weight lifting class. All that happens is the things I do every day seem to get more difficult; not impossible, just more difficult. That difficulty level increases until it is just too much to bother with. Then, one day, I will try again and discover that I cannot do it at all.

There are always solutions to these kinds of problems, new ways of doing things. For example, I am going to start buying milk in one litre cartons. One litre weighs half of two, so it will be only half as difficult. So many other things have gone that way. Slings have replaced transfers. The commode chair has replaced getting on and off the toilet. Wheelchairs have replaced legs. So much has changed. So much will keep changing.

I can still lift the two litre carton. It's not so difficult that I give up. But I can see it coming. That's the really nasty part, that I can see it all coming. There are no surprises, no hidden changes. I can predict what will happen with the milk carton. I can predict what will happen with the bottle of wine, the laptop, the full dinner plate. I know that one day even the fork will be too heavy, full or not. So that's why I am writing about a carton of milk; not because it is heavy, but because it was, and is, predictable. That's the terror of ALS.

David and Murray

It's late; almost 9:30 PM. I'm home from Saskatoon, safe and sound, truck unloaded. This late post is my own fault. I stayed up late last night, celebrating Murray and Pauline's wedding. I held up well, partying with the youngsters until 1:30 AM. By the time David retrieved me and brought me back to the hotel, it was nearly 2:00 AM. Needless to say, I slept. Until 11:00 AM. By the time I was ready and dressed, it was noon, time to check out and get on the road.

Murray and Pauline's wedding was a terrific affair, the ceremony just the right length, the speeches well read and well delivered, the food tasty and well prepared, and Murray had the wisdom to bring in late night pizza. I ate. I drank. I even danced a bit, moving as best I could in my wheelchair, a pretty young lady flouncing into my lap at the end of each dance. Yes, I had a good time!

It's more than just a good time. I am so honoured to have been invited. Murray and Pauline kept the guest list small, an excellent idea given the cost of even the simplest wedding. Yet within this limited guest list, they found space not only for me, but for David should he wish to attend. David, however, had other ideas. He simply took it easy for the evening, today telling me it was one of the most restful weekends he has had in recent memory.

It was wonderful to see Murray, Abe and Bev Olfert once again. It's been years since I have seen Bev. Abe and I haven't seen one another since I left Carla, he being in Abbotsford and me being here in Calgary. Catching up was the best part of the evening. Pauline was so gracious to me, treating me so well. Murray was attentive, making sure I had all I needed, especially when my wine ran out. Murray and Pauline's friends were very social and good to me as well. I really don't know how it could have gone better.

It was a long drive home today. I have to confess to being a bit proud of myself. I did the driving for the first couple of hours in Friday, and today I drove for about three hours. This is important to me, knowing that I can still do road time, still make a long drive. When I got home I unloaded the truck myself, including hauling out the commode chair and my spare M-rail. I used the commode chair as a dolly, taking all of my gear upstairs on my own.

These two things reflect something very important in my life. I can still have a good time, although I go pay a price the next day or two. But I can do it. And I can still load and unload my truck, even though I have help on a regular basis. This means so much to me, the ability to take care of myself, to do things for myself. It means I am not done yet; I still have a ways to go. I can thank so many people for that, but right now it's David and Murray who I want to thank the most. David, for giving me so much of his time and attention, and Murray for reminding me that I can still enjoy myself. Thank you both.

Mavis Wheatcroft

The world continues to surprise me with the gift of people in my life. Yesterday David and I made the trip to Saskatoon. I picked him up from work and drove the first couple of hours. Then, in Drumheller, David took over and drove the next four and a half hours to Saskatoon. I rested; he drove. He is used to driving my truck, but still it takes something to get into a strange vehicle and drive so far, just to help a friend.

That blessing of people continued as we arrived at the Sheraton Four Points here in Saskatoon. We had just checked in when I hear "Richard McBride, is that you?" It was Mavis Wheatcroft and her husband. Mavis and I worked together on a couple of projects at the CBE. We also have this habit of meeting in strange places far away from Calgary.

Our first meeting was in 2010, in, of all places, the Beijing Airport. Mavis, along with several other Calgary Board of Education Principals, was on the advisory board for the Office 2010 project I was handling at the CBE. I had been trying to get these very busy Principals into a meeting to discuss the project planning and ultimate launch. Unfortunately Mavis and a group of Principals were going to India for a one month educational exchange.

At the same time, I got a call to handle a training class in Seoul, Korea. I booked my flight from Vancouver. I was living in Abbotsford at that time, commuting to Calgary. That flight took me to Seoul via Beijing. I arrived there and disembarked to change planes, however this transfer required that all passengers line up at passport control and show their papers.

While standing in that line, I got to chatting with the fellow next to me. He was from Calgary. Really? He worked with the CBE. Really, so did I! His name was Jeff Turner. I told him my name and let him know he was on my project advisory board back in Calgary. I then discovered that Mavis Wheatcroft, another of my advisory board members, was in the group too! So we all got together with some of the other Principals in the group and had our first board meeting there in the bar at the Beijing Airport.

Life went by. Time went by. I was diagnosed with ALS and Mavis came to Betty's Run that year. Then more of life changed. She retired. I lived longer than planned. And all of this happenstance brought us to the lobby of the Sheraton Four Points Saskatoon last night, where we once again crossed paths.

David, Mavis, Pat and myself all got together in a bar, once again. It seems like a theme. But this time neither of us worked for the CBE. So we talked about life, about living, about what we were doing. I'm going to ask Mavis and her husband to dinner soon. These happenstances are too good to be left behind. I love that I get to meet wonderful people, even more than I already have in my life. I love that I meet them in the oddest places. I love that I have such good friends, like David and Ann, who make all this possible.

Retracting A Retraction

I am struggling to find the right words here. I am in awe, once again amazed at the group of friends who have gathered around me to see me through this most difficult journey. They do so much for me, so incredibly much for me, always at the expense of their own time and money, always ungrudgingly, always looking for a way to make things work. With them and my daughter Kate, I have an awful lot going for me, a lot of reason to stay alive.

Yesterday I said I had decided to retract my decision to go to Saskatoon. Today I am retracting that retraction. Yesterday I wrote my blog post with a cloud of sadness hanging over me. I was faced with the decision to not go to my friend Murray's wedding. I could not find a companion to go with me. That is perfectly understandable. All of my friends are people with their own lives to live. So I sucked it up and went to dinner.

Last night was Emma's 10th "brainiverary". On October 13th, 2006, Emma went in for a brain surgery which was to change her life in ways beyond measure. Emma had a brain arteriovenous malformation. An AVM, as it is called for short, is a tangle of abnormal blood vessels connecting arteries and veins in the brain. If left alone, it will eventually rupture, causing bleeding in her brain, killing her.

Surgery, on the other hand, is never simple when it comes to the brain. In Emma's case, surgery caused a massive stroke, rendering her left side unusable. For the last ten years, and even now, she works to rebuild her body and her life. She is an amazing woman, strong and resilient, and I was happy to be with her, and a group of our friends, to celebrate her life, and her progress in living it.

Anne was there too, another of the friends in our group. In fact Anne was one of the people I asked about going to Saskatoon. However she is involved in a cancer run on Sunday, a cause very personal to her. I had asked my friend David, too. He also had an event on the weekend; he is hosting a Saturday morning social event. So that was that. No Anne. No David.

Then, as we were sitting down to dinner, Anne said "Why don't I ask David if I can do the hosting for him on Saturday?" She assured me she didn't mind, and I know that David would trust her to take over. Anne might be the only person David would trust to take over! I said "yes" so fast it made my own head spin. Then Anne said, "I'll call him when I get home; I forgot my cell phone." You would be amazed at how fast my own crippled hands and arms got my cell phone out of my pouch and pre-dialed David's number for her. Lightening draw with the cell phone!

Anne and David talked, discussing arrangements and things to be done. David said he would call back in 10 minutes. It wasn't more than a couple of minutes and my phone rang. It was David. I accepted the call and handed the phone to Anne. They talked, and she said David was in. Then I talked to David and he assured me we could get away in the early afternoon, that I should not worry about booking the hotel as we could do that on the road. and that he was happy to do this for me.

I find myself in tears once again. This time it is the overwhelming sense of gratitude and support I feel, the love of the people around me, the people who do so much for me. I may have a shitty disease, but I am a pretty lucky guy. Both of these people had rearranged their own busy lives, coordinating their efforts, so I could go to Saskatoon. These are the gifts with which I am blessed. These are the friends with which I am blessed.

Saskatoon Reversal

Notwithstanding my post of Tuesday, all its bravado to the contrary, I have decided not to go to Saskatoon this weekend. There are all kinds of issues and reasons I could provide for this decision, but the low down, basic fact of it all is that I don't want to go alone. I just couldn't bring myself to do it.

It's not that being alone on the road is a problem for me. I've done thousands of miles on land and sea solo. I've spent hundreds of hours, my hands on the wheel of my truck or on the tiller of my boat, with nobody beside me, braving the journey an independent knight riding singularly into battle. I can be alone.

Except now.

These days I need more and more help with things. I am getting weaker and weaker, less and less able to care for myself. This morning was the decision maker in some ways. I was tired this morning when the HCA arrived at 10:00 AM, despite having gone to bed at 10:30 PM the night before and finally gotten to sleep at around midnight thanks to a Zopliclone. She got me up, helped me into my commode chair, and made my bed. I did my morning routine and got back onto the bed to dress.

That's where she took over. For the first time since my illness began, I let the Home Care Aide dress me, or at least most of me. I still did a couple of things, but every time she stepped in to help, I did not stop her. She pulled on my underwear for me; all I did was roll from side to side like a beached whale. I started my socks, but when I stopped to rest, she finished them. She pulled my shirt on, then worked my pants on, me once again doing the sideways flip flop. And I realized how easy it was if I just let someone help me.

Then I started thinking about hotels in Saskatoon. There are good ones there, even one of my favourites, a Sheraton Four Points. I began to ask myself "What if the beds are really high?" "What if the safety bars come loose again?" "What if I get stuck somewhere or somehow?" Yes, there is always 911 for help. Yes, I have mostly looked after myself so far. But do I really want to take that risk solo?

I decided not. Now, as I sit here, there are tears rolling down my cheeks, droplets splashing onto my shirt, leaving spots which will quickly evaporate as the heat from my grotesquely fat belly warms the shirt beneath them. I'm dying a bit today. This is the end of a part of me, another of so many endings. I think this could be marked as the day where I started to give up.

My Day

I was doing something the other day when I noticed it was well past dinner time. I don't know what it was, or why I stopped to think about it right then, but my mind latched onto the thought that I didn't get much done in any given day. I began to think about what happens to a "normal" day for me, where it goes and why I have so little productive time.

So I began to look at how a typical day goes for me, one where I go to bed at a decent hour, sleep my required 10 - 12 hours, and where I don't do exercises. This would be any day except Monday, Wednesday, and Friday; these are my exercise days.

Let's assume I don't act foolish; that I go to bed at a decent hour. This means around 11:00 PM. I wake up the following morning sometime between 10:00 AM and 11:00 AM, a full 11 - 12 hours later. Even with this, I am tired when I wake up, usually not feeling like I got a full night's sleep. Nonetheless, we can assume a standard starting time of 10:30 AM, that gets the day going.

The next thing I need to do, after waking up, is just lay there for a bit, sometimes as much as a half an hour, building up the energy I need to launch into the next set of tasks, dressing and toileting. The whole process of transfers, toilets, washing, dental care, more transfers, and dressing usually takes almost an hour, sometimes less, sometimes more, depending on how things go, as it were. So by the time I get to my kitchen table, it can be somewhere between noon and 12:30 PM.

At this point I have had nothing to eat, nothing to drink, and I have not written. So I get that starter part of my day done. I make coffee, I grab something to eat out of the fridge, or not. Some days I just don't feel like eating. Other days I do better. Regardless, by the time I have coffee, eat something, check Facebook, read emails, and write in my blog, it always seems to be around 2:00 PM.

At that point, at around 2:00 PM on any given day, I can start my "productive period". This time space usually lasts for about 2 hours, after which I need a nap or some sort of rest. If I take a nap at around 4:00 PM, or perhaps 5:00 PM, I will usually rest for a couple of hours. I need that rest; it's not optional most days. Every few days I can get by without, but I pay for it the next day, or days.

From 5:00 PM to about 7:30 PM are the dinner hours. I don't always make dinner; I often have leftovers. I also often have company over, usually on Sunday, Wednesday and at least one other day in a week. Then there are those nights where I go to trivia. All of these things, though, follow a similar pattern.

So now it's 7:30 PM and I have been truly productive for about 2 hours of my day. That's it. That's all I get. I do what I can in the evenings, often socializing, sometimes doing laundry, sometimes just resting again. If I get on the couch, say at around 8:00 PM or 9:00 PM, I can easily find myself indolent, trapped there until bedtime. Even so, some evenings will contain an hour or two of activity. I can sometimes find the energy to write, or to tidy up, or to work on small projects.

Mostly, though, by 8:00 PM in the evening, I have spent my energy allotment for the day; I'm done. While I may have lots of mental energy, my physical and emotional stores are exhausted. And this is with only 2 productive hours in my day.

If your day had only 2 hours in it, if you could only accomplish 2 hours worth of "stuff" on any given day, what would you do with it? Shopping? Reading? Work? It's not much of a window. And oh, that's without exercises. Monday, Wednesday, and Friday I lose another hour to exercises. Those days are already full.

I've written this blog, had coffee, had a snack, eaten some grapes. Now I am going to do laundry. That will be my day, all of it. I'll be ready for it to be over, just as dinner begins.

Going To Saskatoon

I wanna go to Saskatoon. No, that is not some insane, crazed whine from a prairie deprived emigrant living along the BC coast. I've met lots of those people. They generally don't want to go to Saskatoon, they have to go to Saskatoon. In fact some of the very people in Saskatoon this weekend will be travel enforced, heading to the flat country for a very important event.

My friend Murray, another ex-pat from Abbotsford, lives in Saskatoon these days. More importantly, he is getting married on Saturday. Yes, in Saskatoon, where he lives. Since he grew up in Abbotsford, his Dad and step-Mom, his sister, and other family members will be making the long trek from the warmth of the BC coast to the chill of the open prairie. And I would like to be there.

Thanks to some help from friends, I have the money for the hotel. Thanks to some good advice from the collection lady at Mastercard, I have cashed in my points for gas cards, so I can afford the gas. Based on the nature of my eating habits and the timing of events, I suspect I will eat out only once or twice over the weekend, something I think I can afford. So I have the money, and I have the time.

What I don't have is a traveling companion. Katherine is in Ontario for the month. Given our relationship status, I suspect she would have declined regardless. I have asked family and friends but have been completely unable to beg or guilt or co-opt someone into making the road trip with me. That creates a challenge.

Saskatoon is about a 6 hour drive. On the way you move from Mountain Time to Central Time, so you lose an hour going there and gain an hour coming back. Even with my late departure needs, both arrivals would be around dinner time, perhaps a bit later on the trip out. I can do that solo with no difficulty. The difficulty for me arises on the other end, when I get there. I can do the hotel on my own. I can arrange the commode chair on my own. I can likely get in and out of bed on my own. The real problem comes when I am on my own and something goes wrong. What then?

I can still travel solo, and if needed that is what I will do on Friday. I will head out to Saskatoon in my truck. I will just have to be extra careful, making sure that risks are minimized and, if possible, making sure nothing goes wrong. The one thing I have on my side is the supportive nature of people in general. If anything does go wrong, I can always call 911, or ask a stranger for help.

But I wish I had someone going with me. It would just be safer that way.

Slack Jaw

I've been complaining for some time now about loss of coordination while eating and issues with word formation. My daughter, Kate, tells me I am having issues with eating because I stuff too much in my mouth and don't pay attention when I eat. She also says I have always done the "dramatic word stumble" thing, where words come out poorly formed or when I have to start over.

It is very possible to dismiss many of the things I notice about myself as "just getting older" or "you've always been like that", as with the loss of coordination while eating or the word stumbles. It's easier to downplay things where you cannot see them, such as the loss of my core muscles or the weakness in my upper arms.

In addition, most people never see the activities where my recent losses become most obvious. When I'm sitting in my wheelchair, the side panels hold me upright. Even as I type this entry, my arms are resting on the table, supporting and holding my body in place. Since I haven't completely lost my core strength yet, I can still move, still appear to be capable.

The more intimate functions, where the losses are truly obvious, well, most people will never see that except for my care workers. You will never see that I need help wiping my ass because I am not strong enough to reach back there any more. You will never see the increasing difficulty I am having in removing my underwear while sitting on my commode chair. You will never see the additional help I am beginning to need when I want to move from laying down to sitting up on my bed.

Something I saw this morning for the first time, something that will be easy to dismiss if you choose, is a slackening of the skin on my face at my jaw muscles. This is an early indication of atrophy in the muscles which control my jaw, my eating, my speaking, my swallowing. These muscles have been getting weaker; I've known it for some time. Now, although this is a very subtle thing, I can see it internally as well as feel it. This will go on for another year, perhaps two, before I lose all ability to move my jaw. It's all part of the ride.

I Am Thankful

Mornings are tough for me. This morning was no different, however this blog is not about how difficult it is for me to do my morning routine or how much longer it takes for me to do any of the things "normal" people do. It's not about poo accidents or pee spillage or soiled sheets or dirty towels. Well, it is sort of about some of that stuff, but not really.

This morning, after a difficult time in getting to the toilet, I needed to do some cleanup. I'm used to this; it's just another thing while trying to live independently with ALS. Shit happens, and sometimes it's messy. This morning, as I assessed the damage, I turned to my sink to start cleaning. I washed some things out. I rinsed some things in preparation for laundry. I cleaned up the floor and some other surfaces. Then, after I was done, I turned to wash my hands so I could go and eat some grapes. Hand food requires clean hands.

It was in that moment, as I turned on my tap, that I realized how fortunate I am to live in a city with the kind of infrastructure which allows me to simply turn on a tap, grab some soap, and make myself clean enough that I am willing to eat with my fingers. For just a moment, I marveled at our technology, our systems, all of the things which make it possible for me to continue living, even with the severe disadvantages I face.

Water. It isn't always there. Not only are there a great many places around the world with limited access to water, there are many places even here in Canada with persistent water supply issues. It's not just about access to water; it's about the infrastructure needed to ensure water is clean and safe to drink or wash in. It's the fact that I can turn a tap and trust the output, trust it to clean my hands, clean my clothes, clean my home. I can turn a tap without wondering what will come out, what condition any water might be in, what level of danger I face in using it.

This is certainly something to be thankful for on this Canadian Thanksgiving weekend. It's not just water, but the whole system of services and goods which come into my home to make my life better, to make it possible for me to live with some level of dignity. There is a lot of good stuff in my life, in the lives of so many around me. We get so wrapped up in the busy lives we lead, that we forget about the things behind the things we need, we forget that water just doesn't show up in the tap, that milk doesn't just magically appear in the grocery store, that heat and light and entertainment and Internet are not and were not always there.

Today, I am thankful I could wash my hands. I am thankful I could clean up after making a mess. I am thankful that I live in a warm, safe apartment in a safe, clean community. I am thankful that the riches of my nation provide me the richness of a meaningful life. I am thankful to be here.

Another Milestone

This post may require some imaginative visualization to understand. Alternatively, you could get a transfer board and try some of this stuff. Your call.

It would appear that my core muscles have deteriorated to the point where I can no longer sit up without some sort of support, be it a wheelchair back or using my arm to grab my M-Rail or bracing on the armrests of my couch or chair. This has become particularly apparent in the last few days, with the usual side effects of muscle cramps and fasiculations. The muscle cramps are the worst, happening as they do in my side muscles around my trunk.

There are other implications from this weakness in my core muscles, especially when combined with my weaker arms. For example I can no longer make an up-slope transfer using my body alone. I need a push from someone else, or I need something to hold on to. Only if the slope is more than just the tiniest bit, I tend to slide back down regardless; my arms are not strong enough to hold me in the up-slope position. This is how I slid while getting into my truck; this is how I broke my foot.

The potential for risk here is higher than ever. This morning in the midst of a transfer my transfer board was not well positioned. It didn't push down the edges of my wheelchair seat cushion. The cushion is a Roho, a very expensive cushion with four separate air chambers and up to 120 separate balloon components which make up the seating area. These various components allow the cushion to change shape depending on how you sit, providing resistive support where needed.

The problem comes when my transfer board only rests on one of the quadrants. The quadrant in question pushes down while the opposing quadrants remain full height, creating a barrier to sliding off of the end of the transfer board. This has not been a problem up until now. In the past, I would simply push myself up slightly, forcing my rear end fully onto the cushion. These days I can't do that. The cushion wall is too much for me to surmount.

This morning I did that, placed my transfer board onto the front left quadrant without noticing. I was in a hurry. I slid down and hit the cushion edge. Unable to lift over that edge, I tried sliding back up onto my bed. I barely made it, using the wheelchair as a push point to get me going. Now, pushing on a wheelchair while trying to transfer is never a good idea. It went sideways. Fortunately I noticed and stopped everything.

There, sitting in mid-transfer, I simply flopped over so that I was laying on my bed, an easy thing to do with no core muscles. Then I grabbed the upper edge of my mattress and pulled myself up the transfer board as far as I could. Finally I used the M-Rail to return to a sitting position. I took a rest for a moment, or perhaps two, then re-positioned the transfer board to depress both the front left and right quadrants, and successfully made the transfer.

This is all new territory for me, being sufficiently weak that I cannot lift past the edge of a cushion quadrant. I've known it was coming; this is part of the reason I can no longer transfer off of my toilet. The angle of attack meant the cushion was in the way, and I am no longer strong enough to lift over it. Still, the inability to safely use a transfer board, one of the core tools of my daily existence, is deeply troubling.

Fortunately I have slings in place in the two critical transfer areas for my world, one in the living room and one in the bedroom. I am using them more and more. This is a trend which will continue. I am getting weaker. That's the way it goes.

Remembering Winter

It's snowing outside, that Calgary kind of snow that whips by in the wind, blowing up and down, swirling in circles, dancing its way slowly to come to rest on whichever surface gravity finally finds. There's not a lot a snow, just a skiff. This is the first of the year. It will go soon, and then, soon after, be replaced by the real snows of winter, the snows which will settle and stay from November through to April.

The parking lots and roads are already clear, heated by the unnatural furnaces of engines contained in the thousands of cars driving by each day. These are the busy roads, the ones which clear quickly. Back in some side street, in some small, quiet neighbourhood within the city, where the roads are traveled by few, the snow will stay, perhaps for a day or so. Then the fall weather will warm up once again; there will even be days of rain.

This is a warning, a shot over the bow, reminding us that we live in the Great White North, a land dominated almost half the year by winter, or the potential for winter. The only place in Canada where this is not true is Southwest BC, covering Vancouver, the Lower Mainland and Fraser Valley, the Sunshine Coast, and Southern Vancouver Island. Since this is where the vast majority of people live in BC, many west coast residents forget that even in their home province, just a few hours north of their damp residences, the power of winter increases its grip. Even BC has cold weather for much of the year; just not the Vancouver region.

I don't mind the winter. I don't mind the cold. I'm used to it, having spent a great many days outdoors in the wet coast weather, living in the kind of misty rain which seeps into every pore of your body, notwithstanding whatever laughingly waterproof garments you wear. I've worked on the mill deck in near freezing weather, swinging a sledge hammer 8 hours a day, splitting blocks for the shingle sawyers. I've sat still as stone while the snow fell on me, waiting for a deer to crack the forest edge a hundred yards away, waiting for that moment, completely unaware of how cold I really was until I tried to move.

It's harder for me now. My blood flow is poor, especially in my legs. Moving about in the wheelchair means there is no muscle motion to generate body heat. When I head outside in my power wheelchair, I am prone to getting cold, even on days when the temperature is relatively warm. Now, in winter, I have to take extra care not to get too exposed to a chill. I am no longer that man who could keep going in spite of the weather. I may like winter, but it no longer likes me. I'm even wearing a sweater indoors today. Still, at least I can look out my window and remember.

ALS Dinner

I'm feeling good today, like I have some workable level of energy. I'm still a bit speedy, like I was yesterday, but not as bad. Of course I know that this energy won't last for long; I'm already yawning. Still, it's nice to feel, if only for a short few minutes, like I can actually accomplish something today. That's my thing in life these days, to accomplish at lease one significant thing each day.

Today my goals are simple. I need to go to the grocery store and get a couple of things for turkey stuffing; I'm having about a dozen people over for Thanksgiving Dinner on Saturday. My other thing to day is doing some laundry. I've been remiss this week, not doing it yesterday when I should have, even though I was home in the evening and had lots of helpers. I just didn't want to bother with it.

These are the kinds of boundaries I find myself faced with a lot these days. My energy wears out quickly. I am tired most of the time. So the goals I set for myself are really fairly minor, at least in the context of what I used to be able to do. I go back to my mantra with this disease; nothing is easy, nothing is fast. So I try to get something done which is within my abilities. That way I feel like I am still looking after myself.

This evening is the annual ALS Volunteer Appreciation Dinner, so at least I don't have to prepare food this evening. My house guest this week, Dianne, is on her own. I am grateful for her visit; she's here from BC to spend time with her aging Dad who is in a care home nearby. She can look after herself; I get to go to a catered dinner. More importantly, I get to say thank you to the people within the ALS Society, especially the volunteers who do so much to make sure I can get my one thing done each day, to make sure I feel like I can still look after myself. So perhaps, even though I do so little with it, the dinner is my biggest goal of the day.

A Quick Turnaround

For some reason I feel quite jittery today, not an anxiety thing per se but I would call it anxiety in the absence of a better expression for how I feel. I'm jumpy, a bit speedy. The muscles that do work on my body seem to want to vibrate, to get going, to move quickly. I'm shaking a bit but not the normal shaking; it's a higher tuned thing, up the scale.

If it were not for the fact that I had no coffee when all of this started, I would blame it on caffeine. After a cup of coffee, it got worse, so there is something to be said for that. It's like a miniature speed rush, the kind I remember from being a teenager and trying some of that kind of thing. I want to chatter, high speed. I want to babble, high speed. Yet there are no drugs in my system for this, no psychological motivator. It's just seeming to happen this morning, today, this afternoon.

Were I a healthier man, I would use this burst of undirected energy to do something, some sort of project. I would go cut some wood or clean out a shed or tidy up my boat. Were I a healthier man, I would go for a walk or even a bike ride, take off and go fishing in the river. But here I sit, unable and unwilling to risk the energy output, worried that I might wear myself to exhaustion all too quickly.

That's part of the conundrum of living this way, living with ALS, living with the perpetual exhaustion. I know full well that any energy I have, or feel, will dissipate fairly quickly. Within moments, or perhaps on a good run within an hour, I will be ready for a nap, tired from the simple exertion of having this energy. It's perverse. I feel like I have energy and that feeling is making me tired.

Stupid, fucking disease. In the time I've written this post, I've gone from buzzing with this energetic vibration to the edge of feeling like I need a nap. None of this makes sense.

The Shuffler Returns

The Shuffler was back today. Only this time she was at least 8 months pregnant, massively pregnant. She was very clearly not going to be able to do any heavy lifting. Her rate of motion, already nearly unmeasurable, has declined significantly with what looks like a pretty massive baby in her belly. I understand her challenge, having seen my wife in this state of pregnancy four times. I wondered to myself why the home care agency would send a woman at this stage of pregnancy to help a 260 pound man with personal care, including transfers and perineal care.

The first thing she said to me was that she could not do exercises, and we only had a half hour. I told her that all I needed was a bit of help dressing thanks to a painful broken foot. She then proceeded to bang my foot a couple of times until she realized it really was painful, and broken. Her comment about having only a half our with me had an impact on me, mostly in my bowels, the pressure to produce having the reverse effect. My toileting time was short and non-productive.

She and I do not like each other, or perhaps it is just me not liking her. I find her difficult to work with, slow to respond, and generally unwilling to help. She will see me struggling with something yet wait until I ask before helping out. I simply gave up and got dressed myself, with marginal help. By the time she responds to a request for help, my impatiences breaks through.

During my dressing process she seemed almost gleeful in telling me that she thought I "was gone", the implication being that I was supposed to be dead. She said "you told me that", meaning I had told her this disease was terminal and I had a limited life expectancy. I seem to recall her insisting that I was not going to die, that this was not a terminal illness. Now she was back and feeling righteous that she was right. I didn't feel like discussing the matter, so I focused on dressing myself with her as the solo member of the audience.

It is more me than her; I admit it. I become impatient the instant I see her. There is a substantial degree of relationship involved in having a Home Care Aide. This person sees you at your weakest, helps you in your worst moments. This person whom you hardly know sees you naked, dirty, struggling, exhausted. Two different people, both with the same level of quality in their work, can be very different in relating to you. Where one relates well, you forgive the failings. Where one relates poorly, their professional failings magnify, making things even worse.

When she left, I started to relax, I am clearly going to have to return to the toilet at some time today, making a solo excursion into undressing and dressing myself. On the other hand, that's pretty much what I did this morning.

My Medicated Existence

I'm off to a slow start this morning. I took a Zopiclone last night at around 12:30 AM and it didn't cut in until about 2:30 AM. That's happened a couple of times lately, where I take a sleeping pill yet remain awake for 2 or 3 hours regardless. Then, when I wake up in the morning, 8 to 10 hours later, I am groggy and unable to get myself going.

Once my Home Care Aide managed to get me mobile, showered, and dressed, we tried doing some of my exercises without the cast on. I got about half-way through before it just got to be too much. I wasn't pain that brought me to a halt, at least not sharp pain, it was more a dull ache setting into the bones of my right ankle. I know that I could take a Percocet for that pain. The pain would go away. It would also leave me even sleepier than the Zopiclone from the night before.

Instead, I passed on the opportunity to take medications. I got up. While I am certainly up and awake, I am still really dozy. It is a certainty that I will be taking a nap fairly soon, perhaps as soon as I am done with this post. We'll see. I do have a goal today. I want to empty and organize my pantry. The canned goods get shoved all over and I no longer know for sure if I have the stuff I need for turkey stuffing. I'll be preparing for Thanksgiving starting on Thursday by making pies, then on Friday I will prepare the stuffing for the turkey. Saturday is the big party here.

I don't really need medications to sleep. I need them more to sleep in something resembling a normal pattern. It is so common for me to go to bed and lay there for three or four hours, unable to sleep. When I wake up in the morning, tired and ready for a nap, it seems to be the most I can do just to write a blog post. Then I need a nap. That nap means I will likely have trouble sleeping at night. I will stay up a bit late and take a Zopiclone.

Then is starts all over again. My medicated existence just leaves me tired, sometimes too tired to care. I think I will go have my nap now.

Thoughts On Death

Yesterday I went to the Medical Assistance In Dying seminar put on by the ALS Society of Alberta. Besides being very interested in the content, I have come away with some very strong opinions about the process for me, and several feelings of uncertainty around whether or not I even want medical assistance in dying. I am, after all, a kind of do-it-yourself guy.

The first thing, the strongest feeling I left that meeting with, is that I, in no way, want to die; not right now, not in the near future, not ever. I love being alive, although there are plenty of times when it is a massive struggle. I have said a couple of times lately that ALS is a humiliating and terrible way to die.

Secondly, given that I have ALS, I know for a fact that I am going to die. My timing might be a little off. I may be like everyone else, not knowing the date of my demise. What I can say, however, is that the combination of certainty of death and progression of ALS means I have some planning to do, or at least some thinking to do. I may not choose MAID. I may not even choose a DIY death. I just know that I have to have some idea of what and when, under what conditions, and who will be there.

I am still uncertain about how I want my death to "happen". I am certain I want to die at home, or on the foredeck of a sailboat. Since I no longer have a sailboat, my home seems like the best option. I want to go quietly, peacefully. My ideal scenario would be to go to sleep one night and not wake up the next morning.

Unfortunately with MAID, this scenario is impossible. For medical assistance, the medical professional must be there to assist in the process. That's just how it works. I can die at home, but I have to have the doctor there. I can take the drugs orally, and just drift off to sleep, something I like the idea of, but the doctor has to be there to see me take the drugs. So once again, I can't just decide when I want to go and do the deed. There has to be some planning, some clinical approach, even an appointment.

On the other hand, the DIY approach has its own problems. First of all, there is always some uncertainty in the process with the drugs. It is possible I might screw it up. Secondly, under Canadian law, even with a MAID supplied drug cocktail, if there is no medical professional present then my death becomes "suspicious", and a police matter. It is also labeled "suicide" instead of a medically assisted death. While the distinction may be fine, I really don't want someone saying I was a coward and committed suicide.

Then there is the whole "day of the event" problem. For me, death is really a very private affair. I have come to learn that I want to die alone in my bed. I don't want a crowd gathered round, their grief palpable as I make this most fateful decision of my life. I want a peaceful, quiet exit. At least that is what I think right now; I make no claims to permanence in decisions like this. With MAID, the date is well planned and I am not sure I can keep that secret. I am such a blabbermouth.

The one thing I did learn from the seminar, the most comforting thing, is that the process here in Alberta is very "patient-centric". I simply make a call to the AHS Care Coordinator, and that person looks after the process with and for me. It takes a few weeks, giving time if I change my mind. Even when I am approved for MAID, I don't have to "pull the trigger" right away. I can wait until I am ready, then call for the appointment. The only proviso is that I must be mentally competent to make my decision, based on a determination by the administering medical professional.

I still have lots to think about. Do I want MAID? Do I want to a DIY death? Do I really care if my Death Certificate says "Suicide"? What will people say to my children and grandchildren? Do I want this as my legacy? Do I want to throw that last big party, then go that night, or do I want to go quietly, no notice to others? Do I want to use the very fast IV process, or the slower oral process for the drugs?

It's a lot to think about.

MAID

I'm headed out to a seminar on Medical Assistance In Dying. The seminar begins at 1:30 PM so I'm pushing my luck in writing right now. On the other hand, it might be like being late for my own funeral. There has to be a joke in that somewhere. Regardless, this seminar will cover the rules for medical assistance in dying here in Alberta.

It's important to recognize that people who make this choice don't make it lightly. Although it is legal to have a medically assisted death here in Canada, there is still a lot of social and religious pressure against it. In Vancouver recently, a man in the latter stages of a terminal cancer, with no hope of remission or treatment, was refused a medically assisted death because the hospital, St. Paul's, is owned by a Catholic organization who view medically assisted death as committing suicide, or murder, both of which the Catholics consider a grievous sin. In fact the Catholic Church has gone so far as to say that people who choose MAID may not be buried in hallowed ground.

That left this poor, unfortunate soul have to be transferred while in great pain, to a facility where he could die in peace, with dignity, without pain. I can tell you for a fact that all of these deaths are medically assisted. Sufficient levels of morphine needed to deal with the pain are always high enough to suppress breathing and heart rate to low enough levels to end life. Everything else is just plain hypocrisy. As the doctor said at my own Dad's death, sometimes you have to expedite things.

That's why I am going to this seminar. I want my ducks in a row. I want to know what the rules are, so that when the time comes I don't have to die in unfamiliar surroundings, with other people deciding things for me, in pain and discomfort. I want to die peacefully, quietly, in my sleep. I simply want to go to sleep one night, and not wake up the next morning. I may need MAID for that.