Monday, 16 October 2017

A Cure Is What Really Matters

It's frustrating how a day of activity can wear me out so much. I didn't do a lot yesterday; coffee at the mall, a quick run up to Walmart. Yet even that low grade activity left me tired last night, and still tired this morning. I am beginning to feel like my best activity these days is simply staying in bed, sleeping. There is no doubt I can sleep a day away, perhaps even a couple of days.

I am up now, in my PWC, waiting for the wheelchair repair person to do the maintenance on my manual chair. The brakes need work. The tires need replacing as do the casters, those small wheels up front. This is something which has to be done every year, at a cost of around $300 or so. It's always amazed me that my annual wheelchair maintenance costs every bit as much as service on my truck. Then again, I don't replace the wheels on my truck every year.

AISH pays for this maintenance, one of the many services and benefits provided by the Alberta Health Services system. Without this kind of socialized health care support I would be in truly dire straits. On top of this kind of thing, AHS covers my prescriptions, glasses, dental care and a great many other things. Almost all I need is covered. It doesn't mean I get away scot free. There are still plenty of things I need which are not "medical" in nature.

It's not just the wheelchair this morning. Home Care, another funded service, was in this morning and will be in every morning until I die. This week we are going to look at adding evening visits too. This week I have also been fighting some sort of infection, eventually showing up as a bladder infection. So rather than rush to the hospital, or see a doctor unnecessarily, I took the prescription medication provided to me "just in case". In a non-profit system, doctors can treat patients without making them come in for every little thing. I didn't need the doctor; I just needed the medication.

Of course non of this will cure ALS, or even slow it down. I am progressing more rapidly these days than I have in the past. While it is good to have health care, I would rather have a cure. That would be the ultimate positive outcome. I don't see it happening for me, but our health care system helps many people stay alive longer, and one day there will be a cure. That matters.

Sunday, 15 October 2017

Another Reality Check

I have arrived at a couple of difficult decision for my life, aside from the big one which has already been made. No, these decisions have more to do with how I live my life day to day, not how it will end. I have decided that I will scale back my social activities, giving up going out as much, spending more time at home, likely by myself. I have also decided to give up completely on the idea of dating or any kind of intimate relationship.

With respect to social activities outside my apartment, the biggest issue is exhaustion, followed shortly thereafter by mobility and access. I think the defining issue for any social event these days will be whether or not I can get there in my power wheelchair. This means not only to the location, but into and around the location as well.

Doing things in my manual chair outside of my home has become too tiring. This is especially true now that I am no longer driving. While I can use a heavily subsidized cab system to get to and from events, there is still the issue of the large amount of energy spent wheeling myself about while out somewhere. It's just too much. So, unless there is true access for my power wheelchair, I am going to stay away.

Of course my social life has been naturally on the decline for some time. I go out far less than I used to. I no longer go to trivia nights, something which used to be at the core of my social activities. There are a limited number of venues these days, and few of them are truly accessible. I might start going back to the Cat n Fiddle, but even that will be challenging with winter coming on. Other things, like going to parties or social events has pretty much fallen away of its own accord. I just can't do it anymore.

Then there is my "love life". It's pretty much done with. Let's face it, nobody wants to start a relationship with someone having such a short life expectancy, or whose life is so constrained by illness. Even I wouldn't do it, so how can I expect anyone else to do it? No, it's a reality. I will be alone from here on out in that respect. It doesn't mean I am completely alone. I have friends and family all round. I am going to focus on that for what remains of my life.

Days alone are tough. Mostly what I want to do when I am home alone is go to sleep. I'm not gettng out much. I don't have a lot to do here at home. So sleeping as much as I want seems to work for me. That means getting up later, writing my blog in the afternoons or evenings, and not really making meals as often. All of these are already a part of my reality, so it's not a real change. It's more of a full realization of what has happened to me, to my life. It's sad. It's upsetting. It's depressing. It's also the reality for me, living with ALS.

Saturday, 14 October 2017

Another Bad Night

I am up at a normal hour, or at least normal for me. There is no reason for me to get up early in the morning. I don't have to go to work or be somewhere. So my morning doesn't usually start until about 10:30 AM when Home Care gets here. Today it started even earlier; Olga arrived at 10:09 AM, 20 minutes early. It didn't matter much. I was awake already.

Last night was tough, another one of those challenging evenings where my body simply refuses to behave. First of all, I have been having Gastro-Intestinal problems intermittently for about a week now. One day I will be fine. The next day I will be struggling with toileting, making a mess, cleaning it up. Last night I went through two sets of bed linens and ended up calling EMS at around 2:00 AM to come and help me.

I was a mess. I made a mess. There was mess everywhere, and this was the second time round. It was bad enough, then, while I was hanging in my sling, ass dripping and flailing in the wind, the EMS folks sent two female EMT's. If my embarrasment wasn't complete, this did it. I just gave up and let them help me get cleaned up and back into bed.

Today I have to deal with the aftermath, a couple of loads of laundry. My HCA did some of the cleaning in the bathroom. She was not here long enough to do laundry. The EMT's had helped with the clean up as well. It's all down to the laundry now. Nothing left but the crying.

This kind of problem is something most people get on occasion. For me the challenge is more significant. I can't just get up and run to the bathroom. The sling usually accelerates events in the most unhelpful manner. So no matter what, the outcome is fraught. Today I have taken the precaution of wearing a diaper. It's just another fact of my life with ALS. It's something I have to live with. That, and the ever increasing weakness in my arms, aggravated by the energy consumed by this issue and the effort it takes to get through it.

Friday, 13 October 2017


It's been a rough couple of days for me, and it's another late night blog posting. I don't have much to say, except that falling out of my wheelchair yesterday left me in bad shape this morning. Every muscle that worked, hurt. My head hurt. I was beat.

So I stayed in bed. I am only up now because of toilet demands and a bit of humger. In a few minutes I will be back in bed again. Tomorrow should be better. I hope so.

Thursday, 12 October 2017

Tomorrow Is Another Day

It's 10:00 PM. I am finally getting to writing in my blog. Of course, as with so many things, I have a reason, or at least an excuse. First of all, I didn't wake up until aroun 2:00 PM, at which time I promptly went back to sleep until around 4:00 PM. I dawdled for a bit, just to get used to the idea of being awake. Then at around 5:00 PM, things started getting... interesting.

First of all, I texted my friend Anne to see if she was coming for dinner today. She replied at 5:11 PM, whereupon I confirmed her attendance at 6:00 PM for dinner, telling her that I would get up shortly. About 4 minutes later I got up, using my sling, having had placed it under during the HCA's morning visit. I slung over to the commode chair. I was getting up for the first time today, and that means other things happen. I carefully placed myself over the commode chair, then lowered myself down.

When I the chair I was a bit off centered, both front and back and sideways. I adjusted while still in the sling, meaning I was supported, unable to fall. Once settled, I removed the front sling straps from their hook. It was then that I felt a bit awkwardly seated. I wanted to move backwards a bit, so I leaned forward ever so slightly, using my commode chair handrail as a grip. Alas, it was a grip to weak. I fell.

Everything slows down for me in times like this. It all becomes slow, perpetually memorable, motion. It started out as a weak stuttered sloping forward, me grasping desparately to renew my grip on the handrail, only to realize that it was too late. The forward list was about to become a full pitchpole. My core and lower muscles, unable to move due to paralysis, did nothing but go along for the ride. On that ever faster journey, I realize, perhaps a millisecond before collision that my face was headed straight for the floor.

I paused for a moment to save the memory, strong into the firmament of my mind. Perhaps I even thought rather than reacted. Either way, my face turned right, its strongest side, and, by the way, best profile. I was not quite through the turn when my orbital bone, right where it meets the zygomatic arch, hit. My face squished downwards like an octopus head. I powered my left upper lip into the effort as well. There was a thud.

Then the room got really quite. Either that or my right ear went deaf for a few minutes, just to match the left. My face hurt, from lips to crown. There were no apparent injuries other than a fat lip getting steadily fatter on my upper left. My shoulders and arms hurt from their collective efforts, futile in the end, to soften the fall. I fell, and hit, hard. Not hard enough to break anything, other than my pride. Just hard enough to do a bit of facial bruising and fatten my upper left lip.

I lay there for about 10 minutes, sizing things up. My next thought was my phone, on the dresser above. I was down, solid. I would need help to get back up, help with sling, help with wheelchair positioning, help with emotions. So I put a towel underneath myself, sliding myself just far enough to reach my phone's power charger, a substanial effort consuming about 10 - 15 minutes. Fortunately my phone was plugged in. I pulled the cord. Down came the phone. Nothing broke. I called 911,

The ambulance crew arrived. On their arrival Excitement all round, this was their first time in attendance in my apartment. I doubt it will be the last. First they got me back into my sling from whence I transferred myself back into the commode chair. They took vital signs. You'll all be happy to know that my blood pressure is fine, my cranial bones are stable and attached, and that I don't have diabetes. Once all that was done, they ensured I got safely to the bathroom, even going so far as to help get my pants off. They left and I restarted my plan from an hour ago. No harm, no foul.

Except there was one, very real casuality of this calamity. Me. No, not me in the person sense; me in the metaperson sense. Not my pride so much, but my self-confidence. "I did this last month. Why can't I do it this month? How can I live like this? Why?" Of course there is no why. Things just are, or are not. I've got ALS. I am getting weaker by the day. I will die, soon, because of this disease. That's just the way it is.

I will recover. I always do, until that time I don't. I am going to bed shortly, well medicated. I will sleep soundly tonight. "After all, tomorrow is another day."

Wednesday, 11 October 2017

Over And Over And Over

Believe it or not, there are some things going on in my life with ALS that I don't share in the blog. I've been asked by some to limit my posts regarding bodily functions. Some things are just too personal for me to post here; my children read this blog. Some things are repetitive, happening all to often with ALS, like falling down or dropping things or exhaustion. You can only tell those stories so often. After a while, they become the background noise, like a political speech on TV while you eat lunch. The lunch is far more interesting, even if the political speech has a substantial long term impact.

So, all of the said....

The last few days have been really difficult for me. Not difficult because they were hard to do; difficult because they wrenched away my last bit of dignity. I've been having tummy troubles for a few days now. There have been accidents along the way. My tummy continues to rumble. It still hurts a bit. However I think the worst of it is over.

I have to be careful when I talk about "the worst of it". That really happened yesterday and last night. First of all, shitting myself is what happens at times like this. It's messy, dirty, stinky and nasty. Now add tummy troubles and diarrhea. When nature calls, I am not in a position to effectinvely respond in a timely manner. Last night, thanks to my tummy trouble, I soiled myself not once, but twice. By the way, did I mention that I had an ass like a shotgun, or perhaps the spray nozzle of a hose, during this time of great activity?

These events are nothing if not undignified. For me, it takes a long time and a lot of effort to deal with, including getting into my commode chair, removing offensive clothing, cleaning myself and my clothing afterwards. By the time I have dealt with an event like this, I am exhausted. I need to rest.

Yesterday it happened twice, within a couple of hours of each other. That wasn't even the worst event. On Tuesday morning I was laying on my bed as my HCA, Kathy, dressed me. The activity of dressing me stimulated things; I didn't even make it off the bed. That goodness Kathy was there to help clean me up. On the other hand, this was another one of many humbling things which make up my life these days. Over and over and over and over...

Tuesday, 10 October 2017

Winter Boots

I've written before about the extra, added costs which come along with having a substantial illness like ALS. There are all kinds of things you don't think about until you get there. Then you get upset, mad, angry, pissed, whatever. Why do I have to spend money on things I will need for such a short time?

It's winter boots this time. I used to have a full collection of footwear; sports shoes, hiking boots, winter boots, motorcycle boots, dress shoes, casual shoes, even slippers! Now not a one of those pieces of footwear fit me, thanks to the swelling from edema. Even if they did fit, I would not be able to put most of them on; my toes curl under as I slide any shoe on my foot. So, for what will likely be the last winter of my life, I am looking for new winter boots.

I have running shoes I can wear, but they aren't all that warm. I could put on heavy wollen socks, but then I can't put on shoes overtop. It bothers me even more that I can't just buy any old boot or shoe. I've never been that fussy about footwear. If it worked, I would wear it. Now, with paralyzed toes and swollen feet, I need to get winter boots that zip up the side and have a larger shoe size than I typically wear. Once again, clown shoes.

I've already done some online shopping but I won't purchase online. I need to try to see if what looks like it might work really does work. The boots I have been looking at range between $100 and $200. I'll probably only wear them a dozen times. I could go to the thrift store and see what they have; I might get lucky. In the end, however, it just bugs me that I need new winter boots.

Never mind boots. None of my winter shirts, the pullover knitted long sleeve underwear style shirts that I find so comfortable, fits me any more. My waistline is just too much for them. So now I have to look at shirts too. Even if I get cheap ones, they will cost about $20 each. So now it's boots and shirts. Last month it was pants of all kinds. Some would think it paradise, to have to shop so much. Me? I wish I didn't have ALS. None of this would be a problem.

Monday, 9 October 2017

Exhausted Insomnia Sufferer

On Saturday morning I woke up tired, willing to do nothing but sleep for a while. I dd not. Instead I got up and started preparing for my Thanksgiving Dinner. As it turned out, it was a small group when it comes to one my partities; there were only 8 of us. A typical party for me runs from 12 to 20 people. Perhaps it was good that it was small. I am running out of the energy needed for large events.

Even small events like Saturday night can leave me worn to a nub. Add a brownie on top to help me sleep, and I am gone, long gone. When I work up Sunday morning, I simply declined the opportunity to get out of bed. Sam, my HCA, dressed me partially as is now the routine for days like this. She emptied my jug and made sure I took my pills. Then she left.

I slept. I slept all of Saturday night after being tucked in by Jessica; I am sure the brownie helped. I slept all of Sunday, barely waking to pee as needed. I don't really remember much else except removing my underwear at some point. They were damp. I took a sleeping pill at 9:00 PM to make sure I would sleep through the night. I don't know if I needed it or not, but I did sleep through the night, finally waking at 10:15 AM this morning to buzz my HCA, Sam, into the building.

You might think that taking the sleeping pills and eating the brownies is why I sleep so much. Alas I wish this were true; I could simply stop them. All the brownies and sleeping pills do is allow my body to do what it wants to do regardless. Sleep. What I find without them is that in spite of my constant sleepiness, I have trouble getting to sleep. Yes, someone with exhaustion also suffers from insomnia. Sleep issues are endemic within the ALS community. We simply don't sleep well, even though we are tired all the time.

So today, even though I feel like I could go back to sleep right now, I am going to go out, do some shopping, then come home to rack some wine that should have been racked yesterday. Oh, and I will eat turkey leftovers for dinner, and perhaps as a late night snack. Hell, I might even do some laundry today. It doesn't really matter. I am still tired as hell and will still have trouble getting to sleep tonight. That's how it works.

Saturday, 7 October 2017

I'll Take A Nap

I awoke this morning completely unprepared to give up sleep in order to arrive at the land of the livng. I was so tired that I fell back to sleep after buzzing the HCA into my building. I slept right through her entry into my apartment, taking her shoes off, putting her slippers on, washing her hands. I just wanted to sleep.

But I have a dinner party today. I can't sleep. I have food to prepare, guests to welcome, things to tidy up. I have to peel potatoes and yams, chop peppers and onions, prepare Cole Slaw and Greek Salad. I have to get ready. All I want to do is sleep.

How bad is it? I fell asleep at the dining table as Sam was getting ready to leave. When Tonny came to make breakfast and help with the turkey, I fell asleep at the kitchen table. Tonny made a coffee for me. I drank it. Then, as you might expect, I had to go pee. So I rolled into the bathroom, hauled out the gear, grabbed a urinal, then fell asleep in my wheelchair while going pee, successfully soaking the crotch in my pants. Oh well, time for a change.

At least now the turkey is in the oven. I have learned a valuable lesson. My turkey roaster is good for turkeys up to about 15 pounds. A 22 pound turkey is too large for my roaster. So Tonny has gone off to Safeway for one of those tin foil roasters and a large roll of tin foil to cover the bird. He will be here in just a moment, and we will transfer the now roasting bird from an open tray to a proper roaster.

Of course "we" is a collective. Brad will do the work. Tonny will run the errands. I will drink coffee, or wine, sitting here fretting over all the things I can't do. I'll probably take a nap.

Friday, 6 October 2017

Not For Long This Time

And so it begins. Late last year I came into a bit of money. It has kept me going, and traveling, for the last year. It will soon run out. I will, once again, have outlived my financial plan. I'm getting closer, though. This time I am within months of terminus. Last time I was out by years. It's not that I am any better at planning or scheduling out any money I might have. I just so happens to have worked out this way.

I'll be out of money, at least "extra" money by the end of this month, perhaps by mid-November. If I work diligently, I might be able to get to my diagnosis anniversary of November 22nd. With that anniversary I will have officially live a full two years past my initial prognosis, and longer than 80% to 90% of my cohort. That means as much as 90% of the people diagnosed on or about the same time as me will have died, or will have resorted to feeding tubes and breathing devices.

I just seem to keep plugging on. I try every outrageous thing I can, yet nothing so far seems to want to kill me any earlier. The every increasing weakness over my whole body is a certain harbinger, a raven on my lamp post, crying darkly into that bleak night which is, or may not be, waiting for me. That's why I am measuring in months these days. I wonder if I should switch over to weeks yet. Who knows? Most certainly not me.

All I know for sure is that I am going to keep going, as long as I can keep going. My decision to stop will be based on any number of factors, finance being only one of them. It's a big one, that's for sure. I continue to hear from other pALS who have been bankrupted or financially ruined by this disease, even here in Canada where we have such good health care support and the various ALS Societies across the country. Everything I do in my life costs just a bit more, takes just a bit more out of me than it would without ALS. I am unable to sustain employment thanks to my weakened condition.

Even my writing fails to pay; I write this blog for myself as much as anything, as a progression tracker and life witness. I've written the odd thing now and again, yet consistently fail to find publishers. The truth is that there are so many people out there who are writers, good and bad, all looking for someone to publish and pay them. I can't handle the competition. I'm just not up for it.

So, once again I am back to scramblng to make ends meet. Once again I will be buying the cheap wine kits, and skipping out on Scotch altogether. Once again I will eat through the food in my freezer, carefully ensuring I get the most out of it, until such time as I may or may not go shopping again. There are resources out there, like the food bank and such. Once again I will use them.

Only this time it won't be for so long, I promise. Please donate. The button is up on the right.

Thursday, 5 October 2017

Five Hours To Get Up

Well, it only took me five and a half hours to get out of bed, dressed, and into my wheelchair today. This is clearly not normal, however much of what caused this marathon waking up process is completely a part of my new normal. What happened today is that many small things added up to being big things.

First of all, I was tired this morning when Home Care arrived at 9:30 AM. She was early; another client really needed her at noon so I let her be here early on Thursdays. As it was, her early arrival had little to do with my being tired. Last night I put myself soundly to sleep with a cookie in the afternoon and a large brownie in preparation for bed. I collapsed into sleep at about 9:30 PM. I wanted 12 hours of sleep, yet when Sam arrived, I needed a few more.

I woke up, meaning to get up, at around 1:30 PM or so. Having planned for this, I had taken my pills when Sam was here, and had had her dress me part way. I was wearing socks and boxers. I had also asked her to position my sling underneath me while I stayed in bed. That way I could just attach the sling to the lift, getting my day off and running when I was ready.

I was ready.

The first thing I discovered when lifting myself in my sling is that it was off-center, lifting one leg high and dragging the other across my bed, banging down the side of the bed, becoming lodged underneath the bed rail. I pushed from there to get into my commode chair. Unfortunately, with this odd sling positioning, I was completely unable to get properly into my commode chair. So I turned around, planning to lay down again and reset my sling.

Sadly, as it happened, my stuck foot presented a real problem when I tried to lift it onto the bed. I could not; I am not strong enough these days to lift my leg out of any sort of jam or stricture. So there I was, unable to get into my commode chair, unable to get onto my bed in a laying down position. I thought I might try sitting up instead; it's only been a few months since the last time I sat up. What could possibly go wrong?

I swung back to get bed, lowered myself, and disconnected my leg straps from my sling.

What went wrong was my inability to sit up on my own. No sooner than I had rested myself into a sitting position on the edge of the bed than I flopped over backwards. Now I was unable to reach the leg straps of my sling, unable to sit up on my own, unable to roll over, unable to do almost anything. I was a whale, trapped on the beach, not in any real danger in the short term, not able to make a positional change.

By now it had been well over an hour since I first tried to get up. I wasn't sure what to do, so I lay there for an hour or so, intermittently trying to sit up, trying to reach my leg straps. It wouldn't have mattere all that much anyways. I could have the leg straps all I wanted. Not sitting up meant I couldn't get them under my legs, back up to the lift hooks. I tried, and tried. Then I rested, and rested. Then I tried some more. Then I rested some more.

By the time I was ready to give up, I decided to call for help, specifically from the Pat and Paul, the elderly couple who live a couple of doors down. Pat came up, bringing Paul as an observer. She handed my leg straps through my legs then attached them to my lift. They were still unbalanced, but now I had help to adjust myself and my commode chair. After a great deal of struggle, I finally managed to get squarely seated on the commode chair. It was 5:00 PM.

The next thing was to get to the bathroom, then get back on the bed to redress. I managed to do that in about 40 minutes, except for putting on pants. I was expecting company. I needed pants. It's very difficult to pull on pants while laying down with the sling straps between my legs. It calls for some "adjusting", rolling from side to side, making sure the straps are not lost in the process.

I finally managed to get it all together by about 6:00 PM. I took the next 30 minutes or so to sling myself up, as balanced as possible this time, and get into my wheelchair. Now, after a suitable wait for resting and refreshment, I am up and about. And it's almost bed time again. Time for another large brownie, I think.

Wednesday, 4 October 2017

Frontal Failure

When you are trapped in a wheelchair or cannot get out of bed easily, having a hefty serving of chili is a bit risky. Having two hefty servings is down right dangerous. The risk goes up exponentially, not geometrically. I am a risk taker. There are outcomes from decisions like this. I should know better.

The biggest parts of the whole equation are the limitations put on me because I am paralyzed from the chest down. There is no ability to just hop up and use the toilet. These events must be planned to arrive at about the same time every day, when a Home Care Aide is here to help with potential problems. I don't know why I say potential problems; there are always problems, none of them potential so much as actual.

It's true with almost every aspect of personal care, that being paralyzed, being in a wheelchair, makes it more difficult, with the concomittant increase is mess and cleaning up. For the men who are reading this, who are not already dealing with it, here is a trial for you. Get a wooden kitchen chair. Wooden is important for potential clean up issues. Sit well back on that chair and, without moving your legs or buttocks, remove your pants and underwear. Too difficult? Then just try pulling out your junk while seated thusly. Once you are in position and ready for action, try peeing into a jug or container of some sort. Let me know how it goes.

For women this problem is substantially more complex. On the other hand, it can be much tidier. There is no junk to haul out, no stream of urine shooting skyward. But they have the added effort of transferring to a toilet or commode chair, something all pALS eventually lose the ability to do. Then what? For most women with ALS, once the ability to transfer leaves, they either need someone to aide with the transfer, or they end up with a supra-pubic catheter.

All in all, I would say the most humiliation from ALS enters into my life through these private activities. Alas, for me, they are not all that private. I need help in getting dressed, getting undressed, and cleaning up afterwards. It's true; I can no longer wipe my own ass, let alone wash and clean it after a disaster. And one of my big life objectives these days is to get through a day without peeing on myself. So far I have failed on all fronts today.

Tuesday, 3 October 2017


I'm tired today, so tired I can barely type. It's not a shortage of sleep; I've had plently lately. It's more likely related to the Zopiclone I took at midnight last night. Nonetheless, I can hardly keep my eyes open. I think for today that this is it. The snow is winning. I must hibernate.

Monday, 2 October 2017

Don't Be A Shut-In

As much as I hate to plagiarize the punch line from a TV show I don't even watch, "Winter is coming". That is most certainly true here in Calgary as we get our first heavy snow of the season. Winter comes early here, then goes away for a day or two, then comes back, then goes away, etc., etc., etc. Temperatures will start from freezing today, increasing each day, until Friday it will be summer like temperatures, then it will start to get cold again.

That's one of the amazing things about winter here. It can be bitterly cold one day, then the next day a Chinook blows in over the Rockies. The temperatute shoots up. Snow and ice melt. Then, a few days later, winter returns. Right now my tree is draped in heavy snow, the branchs drooping downwards, holding the thinly veiled threat of breaking under the weight. Tomorrow those same branches will lift once again, bringing back the birds that so brighten my day.

This return of cold affects me directly in a couple of ways. First, the snow, slush, and ice make it difficult for me to drive my wheelchair. I get stuck sometimes. I have to go out of my way other times to avoid getting stuck. So I have to wait for the Chinook to come, or for the city and residents, to clear various roads, sidewalks, and pathways. On the first day of the storm, with snow and cold all about, I am a confirmed shut-in these days. Second, I don't have all the best winter footwear. I should probably find some boots which zip up at the side; ones where I can put them on myself. I've had winter gear for a long time, but the boots of the past are too difficult for me now.

Regardless, this early blast of winter will not keep me trapped for long. I'm already looking out the window and thinking about whether or not to go to the mall. I have nothing to purchase, but I haven't been out for a few days. It's about time. If not today, then tomorrow. It will be warmer, and there won't be snow on the sidewalks. I decline to live my life as a shut-in.

Sunday, 1 October 2017

The Power Of Human Touch

I lay in bed all day today, and much of this evening too, finally getting up at 8:30 PM to attempt to go to the bathroom. I've been constipated for a couple of days, something that happens to a great many pALS along with many others confined to a wheelchair or living with immobility in some way. I've always said "in order for your innards to move, your body must move too."

There are two principle reasons for my lassitude. First, the obvious. I am worn and tired after a very busy week, nights where I did not sleep well, days where I was on the go far more than normal. The second, less obvious reason, is that I had no reason to get up today. There was nobody visitng. I had no urgent tasks to do. So I did nothing.

The only human contact I had today was the rather perfunctory paid contact provided by my Home Care Aide. She was with me for a short time this morning as I took my pills and put on some basic clothing. Even so, her physical contact with me was very limited, minimal to say the least. It's important to note that Home Care provides for my physical care, not the care of my spirit or emotions. The come in, do their job, and leave, rarely making any contact beyond that minimum.

That human contact is essential for my well-being, for anybody's well-being. There is ample research to say that human touch is essential in our life. As per this article in Psychology Today, "Physical contact distinguishes humans from other animals. From a warm handshake or sympathetic hug to a congratulatory pat on the back, we have developed complex languages, cultures, and emotional expression through physical contact. But in a tech-saturated world, non-sexual human touch is in danger of becoming rare, if not obsolete. Despite the benefits of digital advancement, it is vital to preserve human touch in order for us truly to thrive."

One of the terrific things about having my young grandchildren about is that they have no qualms about touching me. During the week there were any number of hugs from Rose and Quinn. Rose was eager to be near me, most times. Quinn had this charming habit of running up and kissing my arm, then saying "I love you Grandpa." Those moments are immeasurable in their value, both now and in memory.

The sad reality I hear from many pALS, even those in loving, married relationships, is that they don't get touched enough. This is not sexual touch. This is the simplicity of a hug, a hand on the shoulder, or someone sitting in close contact. Even those married pALS tell me that their partners become care givers, and lose the touch of love that matters so much. One said to me "He is afraid to touch me. He is afraid he will break me." It is the sad reality of this isolating disease.

The reality is that human touch does so much for us, beyond the obvious feelings of love and affection. It improves our general well-being. It improves our overall immune system. It reduces our internal anger and agression. It reduces barriers to trust and overall communication. But most importantly, it makes us feel like we are alive, like we have a reason to live. Without human contact, we lose our humanity, and our will to live.

I often go for several days where nobody other than a Home Care Worker touches me in any way. Not a hug, not even a handshake. I feel it. I know it. So where there is nobody to get out of bed for, I just stay in bed. And I revere those who are not afraid to make that physical contact with me. It matters.

Saturday, 30 September 2017

Routine Returns

They're gone, all of them. Mary, Rose and Quinn are on their way to the airport thanks to David. My Home Care Aide, Olga, came at 10:00 AM and left at about the same time as the kids. It went, in merely a moment, from being a whirlwind of activity to being near silent, with only the whirring of the fridge and the rushing noise of traffic passing by on the street below.

That whirlwind, of course, has left behind its scattered remnants as all whirlwinds must do. There is a basket of linens for me to launder, bits and pieces of paper here and there, a cot to put away. Yet there really is very little evidence that the kids were ever here. Mary tidied, put away, and left me very little to do afterwards. I suspect my largest task will be folding the cot; I'm going to ask David to help me with that once he returns from the airport.

Now I get to savour these moments of quietude, this time of stillness. I get to contemplate once again the impact of seeing my ex-wife yesterday. I get to smile inwardly at the reluctance of my grandson, Quinn, to even leave my apartment. I get to relish my moments of a made bed, a tidy home, a clean kitchen. I get to bring order and timeliness back into my life. Routine returns.

All of this doesn't mean my life suddenly becomes empty. I already have wine bottling going on this afternoon. Those who are helping me will stay for dinner, and perhaps a few glasses of new wine, this evening. Tomorrow will be a day of rest, perhaps. We'll see how I feel. I know for certain I don't have to do any shopping. My fridge is full. My freezer is full. My pantry is full. My wine rack is full. The only thing missing is a decent bottle of Scotch. I seem to go through a lot of that stuff these days.

Friday, 29 September 2017

I Am Happy

Today, for the first time since I left her in 2011, I saw my ex-wife in a social setting. I've seen her in divorce court, forced to go to BC twice, once before diagnosis and once after. Other than that I have only spoken to her on the phone once, when her brother died. Beyond that, nothing. So it was interesting to see her today, to see how I would react.

My first glimpse of her was when she walked in the door. I had no real reaction, and actually paid very little attention to her. I think she was rather disconcerted by this. I don't know what she was expecting, but a joyful reunion was not something I was up for. Her first glance at me was filled with this doleful look of pity, or perhaps sadness on her part. I'm not sure what she was feeling. I'm guessing she was processing the fact that I wasn't heartbroken or in need of her approbation.

We were at Kate's engagement lunch, along with Phil, his boys, his parents, his sister and her partner, Mary, and her children. I was near the middle. Mary sat between us and she sat a couple of seats away. Quinn was next to her and I commented on how excited he had been to know that he was going to see her at lunch. There was little said after that, except to discuss the death of one of our children's friends and a diagnosis of Parkinson's for one of my life long friends. Beyond that, I spent my lunch enjoyng a lively chat with Phil's family.

The most distressing part was at the end of lunch. Once again that look of pity came over her, a look that almost repulsed me. I need no pity. She said "I hope you find peace and love." "I already have", I responded. It was not a planned response. Those words popped out of my mouth before I could even think about them. Of course words often pop out of my mouth before I think of them. Perhaps a kinder person might have said thank you, or responded with a similar emotional expression. I did not.

Then I started thinking about it. I found peace almost immediately after leaving the marriage. I have been very happy over the last six years, enjoying life as much as I can. As to finding love, I am surrounded by it, with friends and family constantly uplifting me as I struggle with ALS. What I haven't found is a lover, someone to be with me in a physical sense. Yet I am happy, happier than I ever could have been had I been living with that pitying look and her emotionally controlling framework.

Yes, I have found peace and love. I don't know if she has. Would it be too cruel to say I don't really care? Does it make me a bad person that I am concerned about my own well-being first? I guess as a human being I hope she finds what she is looking for out of life. I want her to be happy too. She didn't seem that way today, except for those few moments when we talked about others. As to me, I am in a good space. I am happy.

Thursday, 28 September 2017

Royal Tyrell Museum

It's been quite the day today, a day of highs and lows, joy and sadness. I couldn't write this morning; we were pushing hard to get out to Drumheller and the Royal Tyrell Museum. Home Care came late, and so did our drive, Isaiah. He is Phil's son. Phil is now officially my daughter, Kate's, fiance. The engagement lunch is tomorrow but the news is out. So we were in a hurry.

I want to say that I took my daughter, Mary, any my grandchilren, Rose and Quinn, to the Royal Tyrell Museum. That would only be partly true. Certainly I was the orchestrator of the event. Certainly I treated them all, including Isiah, to the museum. Alas, I did not do the driving. I am now certain; I am no longer able to drive at all. My arm strength has fallen enough in the last six weeks such that I can no longer safely drive any distance at all.

As a part of that general weakness in my arms, I can no longer consistently raise my arms above my shoulders. I can do it now and again, but there are enough times when I cannot that I will not put my trust in my own strength. The exhaustion has increased as well, so driving for two hours there and two hours back is just too much risk.

Thankfully Isiah is young and strong. He made the two hour trek from Eckville down to Calgary, then drove the two hours to Drumheller. He helped load and unload my power wheelchair, spent time with the kids, and was kind beyond measure. When Kate called to see how it went today, I told her she should tell Phil to be proud of Isaiah. He was terrific.

With his help, the day with the kids was terrific too. Alas we have worn out poor Quinn. He is so tired now he is crying himself to sleep. But what can you expect with such a full day for such a little boy. He's only three. While most times he is fun and happy, right now he has had enough.

I mean the fun and happy part. We had so much fun at the dinosaur museum, with the kids happily running from exhibit to exhibit, Mary taking dozens of photographs, and me tooling around in my power wheelchair. Actually, thanks to Isaiah driving, I maintained a good energy level for almost the whole day. Still, after the day, and after cooking dinner, I kind of feel like Quinn. I won't cry, but I am getting pretty tired.

Having the kids here is great fun. I am so grateful for them, and for Mary for bringing them out to visit, taking the time and trouble to make sure they are looked after and having fun. I confess that she is better with them than I was with her when she was that age. She has a lot of patience with them, at the same time keeping discipline, all the while managing both their needs and hers. I am proud of her, and her kids too.

Wednesday, 27 September 2017

Driver, Please?

This first significant disappointment from my loss of driving has occurred. It didn't take long. I didn't expect it would take long, yet even so this is distressing. My daughter, Mary, along with my grandchildren Rose and Quinn are visiting with me this week. Mary has expressed a desire to go up to Drumheller for the day, for a "last road trip" with me. She's not been there, nor have her children. It would be terrific day.

Unfortunately I can no longer drive my truck. In addition Mary doesn't drive. So that means finding a volunteer to take tomorrow off, and to drive us there, visit the dinosaur museum with us, and drive us back. I actually had two people lined up to do this for me, one plus a backup. Unfortunately, for business reasons, both have had to cancel. With no driver, the Drumheller trip to the Dinosaur Museum is unlikely to happen.

On top of the lack of a helper for the day, I am exhausted again. Yesterday was moderately busy, so I pushed get though. The end result was that I was too wound up to sleep. I didn't have a cookie. That would take too long, so I took a sleeping pill. Now I am dealng with the groggy aftereffets. I'm tired, certainly too tired to push myself for a 2 hour drive each way.

This is disappoining. I'm going to see if I can get a volunteer for Thursday. If not, then Mary will have already had that last road trip without knowing it. It's a bugger, but that's the way it is.

Tuesday, 26 September 2017

More Grandchildren Visiting

Mary is coming today, along with Rose and Quinn. This will mean each of my children, along with their respective children, will have been to visit me over the last couple of months. They know what is happening, wisely choosing to visit while I can still be active, while they can do more with me than sit by a bedside or push a wheelchair around my apartment.

This is not to say that my infirmitude will begin immediately. Actually it's been "beginning" for quite some time. Today Mary will see progression from the last time I saw her, back in April when David took me down for my Mom's birthday. She will see ever encroaching weakness, ever decreasing ability. She will see the increased exhaustion, the rapid tiring. All of this was true back in April as well; now she will see it in more intense manner.

What I do with her and the kids is somewhat up to her. I say "somewhat" because there I things I know will entertain them, things I have done before, things I know I can do in my power wheelchair. This wonderfull wheelchair will enable me to take them to the zoo, thanks to Calgary's C-Train. Thanks to help from David, assuming it all works out, I can go to Drumheller and take the kids to the dinosaur museum, once again using my PWC as my main means of support. If it all gets to be too much, all I have to do is lean back and take a nap. I know it works; I've done it before with my other grandchildren.

The are here until Saturday morning. It will be a busy few days but I hope to get some sleep along the way. The kids are small; they go to bed early. Mary usually goes to bed at 8 or 9 at night to help settle the kids. I'll have a cookie at 7:00 PM; that'll make me sleep. That's my only real worry about this week, getting enough rest. I'm fairly sure I can manage that.

Monday, 25 September 2017

Food, Toilet, Pills

I'm up, out of bed. This is no small accomplishment given the way I feel today. I've been struggling since last night with an upset stomach, along with it's outlier components of diarahhea and nausea. None of it is serious. None of the possibilities have come to pass except one. This morning, once seated on my commode chair, my bottom end started production before I could get myself over the toilet. Thank goodness my HCA, Kathy, was here. Thank goodness she dismissed it as a mere trifling event, nothing to give a second thought.

My HCA's are all really good that way. Not once, in all my care, have the criticized the outcomes of my illness. They have been almost constantly encouraging and supportive. I know they are paid to do that, but it still matters. Their encouragement is sometimes the only thing that makes me get up on any given morning.

The real problem is that any small illness, be it a random bacteria or a raging cold virus, has the ability not only to leave me seriously ill, but in many cases, dead. My own immune systems is so compromised, so constantly fighting against ALS, that it has little ability to combat most common illnesses. What happens is that the fight against a germ wears me out, as does the fight against ALS. So the smallest of things can lay me out for a day or two.

That's what happened today. I got up. I had my morning coffee and a sandwich. I started to fall asleep at the table, so, eventually, after fighting it for a while, I went to bed for a nap, thinking I would get up in a few hours. I took an Immodium to be safe. That was 7 hours ago. The two things that finally forced me out of bed were another trip to the toilet and the need to put food into the fridge. Oh, and pills too. Can't forget my own personal pharmacy. They are here in the kitchen, waiting to be sorted for the week. So, food, toilet, pills; those are the reasons for my writing today.

Sunday, 24 September 2017

More Sleepy Days

Yesterday was a sleep day. I've been writing that a lot lately. It's just easier to stay in bed some days. Even today I feel like I could go back to sleep, and stay there. I wonder if I will ever experience another day where I am energetic, refreshed, willing to do things, go places. As of this moment, I doubt it. I suspect tired is the way I will live the rest of my life, they way I have lived it for a long tim now.

Yesterday's tired was to be expected. It all started on Thursday, actually. I had a busy day on Thursday. Anne and I went shopping at the Wine Warehouse, picking up two more kits, the ones courtesy of Jade and Travis. I was going to start them Friday, but I had problems which I will touch on shortly. Then I thought I would make them Saturday, but I was asleep. Now I am hoping for more energy tomorrow. We'll see.

In addition to the wine, I went grocery shopping for fruit. Anne was kind enough to go look for something at HomeSense for me. I am looking for a 2 or 3 bottle small wine rack to put white wine in my fridge. Then we went to my apartment where Anne retrieved the laundry and I started to put groceries away. After that, a few drinks then bed. It made Thursday a long day.

As to Friday, I slept fairly well after a moderately late evening. I managed to get about 10 hours of sleep, still a couple of hours short of what I really need, but enough to keep me going for the day. Unfortunately the day held difficult surprises for me. First, there was a good part. I got up. My new HCA made me a bit of breakfast, although she did not manage to clean up afterwards. Anne helped with that later in the day when she got here.

As to me, after breakfast and blogging, I went to put on a catheter. That way I would not have to worry about going pee while the party was on. Unfortunately, in the midst of attachment, my bladder decided to relieve itself. I got wet. So I decided to sling myself onto my bed where I would both change as well as finish putting on the catheter.

So, I slung myself. As I began to lift, the sling spread my butt cheeks. My colon, sensing this opportunity, decided to release its minor contents. I was trapped with open butt cheeks. It happened. So there I was, slinging about with wet and dirty clothing, wondering what to do next. My commode chair was out of reach, so that did not help. The only thing I could come up with was to transfer to my bed, from whence I could reach my commode chair. On the bed I would strip off my dirty clothes, then transfer to the commode chair, then head for the bathroom to clean myself up. After that, I would redress, finally attaching that God damned condom catheter.

Alas, while stripping off my soiled clothing, I discovered the contents thereof were more liquid than solid, spreading easily as I moved about. Now, rather than a dirty bum, I had shit from ass to ankle. Worse yet, I managed to spread it onto the sling and onto my bedsheets. Committed as I was, I had to keep going. I worked towards the commode chair, now spreading the mess even further. I finally got the commode chair into place, then used the sling to put myself onto my chair, spreading the mess further onto my sling. At last I made it into the chair, filth and all.

I went to the bathroom, cleaned myself as best I could, and returned to my bed to dress myself and condomize. The bed was a mess. The commode chair was a mess. I had peed and pooped on my pants and underwear. Nonetheless I was dedicated to cleaning it up before company arrived in a couple of hours. So my first step was to get dressed. I covered the dirty sheet with a towel, thus creating even more laundry, and finally did dress myself, including the addition of the catheter bag, but not the catheter itself.

After dressing, I started the cleanup. First I used napkins to get at the stuff I could wipe off. Then I took the upper bedsheet, all my dirty clothes, and finally went to attack my bottom sheet. I could get the near corners easily. I moved into the corner of my bed and the dresser, using the dresser and M-rail as a support system while I reached far across the bed. It was in the midst of that when I realized I had forgotten to put on my wheelchair brakes.

The chair went backwards. I remained braced by the dresser and M-rail. A loss of balance was achieved with me leaning forwards, too far forwards. While I struggled for a bit to regain an upward balance, I just went further and further forwards and down. Ultimately I was so out of balance I just fell fowards, out of my wheelchair.

I managed to get back into my sling. In my infinite wisdom, I had taken the dirty one off the lift and replaced it with the clean one from the living room, all while in my commode chair. After all, I was at least reasonably clean by this time. I lifted myself back up, put myself back into my sling, and said to myself "To hell with this nonsense". Anne was one of a few good friends coming for dinner, and she got here early; I had asked for that when I called her after falling out of my wheelchair.

When she got here the first thing she did was strip my bed and get the laundry started. Then she remade the bed. After that she helped me make my fruit plate for the dinner. Mike, another friend, was coming to cook. Anita brought Apple Crisp for dessert. Steve and Ray brough snacks for games afterwards. Rhonda brought a deli plate for the same. I provided wine, cookies, and dessert.

By the time the evening ended it was well past midnight. So, for two days I was busy, especially Friday. For two nights I was getting by on 8 to 10 hours sleep. So I slept all day Saturday. Even today I feel like I could sleep the whole day away. My get up and go has got up and went. That's ALS and exhaustion in action.

Friday, 22 September 2017

Meeting Richard

The Home Care Agency has been having trouble finding someone to replace Olga on Fridays. After three weeks of a temporary fill-in, today they sent someone who might be my regular Friday HCA. She's very young, only 20 years old, but already she's seen more naked men than a Chippendales Quality Control clerk. She came in fully prepared, not knowing quite what to expect.

It's really quite brave of her, only 20 years old, moving from Red Deer to Calgary and taking up this very personal and demanding kind of work. She seems quite competent, if a bit slow off the mark. On the other hand, caring for me is not an easy task, or series of tasks. She was almost certainly moving slowly to make sure she got everything on my care plan. Even so, she missed a few things. Nothing serious. Just a few things for me to tidy up.

I can't really blame her for wanting to get out quickly, or at least on time. Her introduction to me was not up to my usual standard. It mostly had to do with toileting. I ate a handful of prunes before bed last night. They did their usual magic. This morning I was up and in action, bathroom action that is, very quickly. There was an urgency about my routine, a forced time horizon.

I rolled over the toilet and allowed my body to do its thing. The trouble is, prunes are soft and squishy, and so is their inevitable outcome. Add to that my inability to gather sufficient muscle strength from my core and you have a "wait and see" situation. Thanks to the loss of muscle response in my rear end, I cannot tell for sure when the job is done, especially in a situation like this morning. So I guess. Then I clean myself as best I can. Then I roll forward.

At that moment, just after clearing the toilet, my colon decided it was not quite yet done. I, or rather my rear end, marked a pathway to the shower. Once in the shower, I cleaned up again. Once again my colon took that as a signal for further discharge. I hosed off the shower floor as best I could, then had to ask my brand new HCA if she wouldn't mind wiping my poop off the bathroom floor. She didn't actually notice the inside of the shower, a job for me perhaps.

After seemingly cleaning myself up, we transferred this limp hulk I call my body over to my bed. Fortunately I always put a towel underneath my landing zone, just for days like this. I was not as clean as I thought; I stained the towel. My young, pretty, vivacious 20 year old HCA rolled me over, and had to wipe my ass. I can't even make a joke about having a nice ass; it's flabby, flacid and fat.

I wonder if she will return next Friday, after such a sauve first meeting.

Thursday, 21 September 2017

Bye Bye Driver

It's been a tough day today, in terms of disease impact. Today I made the final decision to hang up my car keys, or rather my truck keys. This marks a substantial decision as I deal with living with ALS. My truck has been my life, and my lifeline. While the last few months have seen a steady decline in upper arm strength, I thought I might get through until at least November, perhaps even December. Alas, this is not to be.

There's an important note here. When I left my wife, the first thing I did was order my new dream truck - a Ford F150 with EcoBoost engine, long bed, King Cab, 4 X 4, and a full towing package. My plan was to get a small trailer for hunting, then enjoy summers in the woods and fall at the campsite. I thought this truck would last me for at least a decade. I also thought it might be the last time I get something like this.

It turns out I was correct on that account. This is the last vehicle I will ever own, the last thing I will ever drive. That last drive took place a couple of weeks ago. I was worried then, and I have gone further downhill in my arms. I hurts to lose this bit of independence and freedom. I've never felt so good as when I had the tiller in my hand, sailing my sailboat. The next best thing was driving down a highway, seeing things I have never seen before.

The truth I have to face is that this is just one of many other changes coming over the next few months. My arms are on a path to fail completely. My core muscles are almost completely gone. I can't pick up even the slightest thing and raise it above my shoulders. Tossing my blankets over myself is something I can barely do anymore, let alone lift a pillow to adjust it when I am laying on it.

There's more, more examples I can give, more sad tales I can tell. Yet here I am, figuring out ways to live without a truck, to get around in my power wheelchair, to get others to take me places using my truck. I'll likely keep it until February when the insurance runs out. On the other hand, the handicapped vehicle shop knows I am looking to sell. They might find a buyer sooner. Then it will really be gone from my life.

Wednesday, 20 September 2017

Tuesday's Excuse

I stayed in bed yesterday. I didn't even get up to write. Tuesdays in bed; it seems to be a consistent theme, or at least it's becoming a consistent theme for me. The weekends tell the tale. On Friday night I often have somone over, staying up late, hanging out. On Saturday it's fairly common for me to have some sort of event, either wine bottling, or wine making, or a potluck of some sort. Sometimes, rarely these days, I will go out on Saturday. Generally, though, Saturday night involves lots of wine and staying up late.

Sunday is my first day of rest. I will often take a long time to get out of bed on Sunday, the only reason for actual getting up involves some Protestant guilt about having a messy home or laundry that needs doing. I have learned that both can wait, notwithstanding my Grandmother's admonitions in my head. So often Sundays are either a late arrisal, or no arrisal at all.

Then comes Monday, probably my favourite day of the week thans to my HCA Kathy. She comes in and immediatly encourages me to sleep for another hour while she cleans. Then she makes sandwiches for me; by the time we are done it's no longer breakfast. It's well after 1:00 PM most days. So I've slept in a bit, I have food I like, and Kathy has me exercised and dressed. I usually get up.

Tuesday, however, is a different story. Kathy certainly comes in and does her stuff. Yet I know there are no exercises, no intent for me to shower, no sandwiches waiting. Now, to be sure, all the food Kathy makes for me is real food, good food. If hunger were a motivation, I would most certainly get up and eat. It is not; I don't feel hungry all that much most days. I do every once I an while, but mostly I eat because I know it's time to eat, and because someone has made something for me to eat.

So here I am, yesterday morning. Kathy walks in, takes one look at me, and says "You want to sleep, don't you?" I mumbled in the affirmative. She emptied my pee jugs, covered up my feet, and said she was off to make something for me to eat. If I wanted it, I would have to get up.

I didn't want it. I stayed in bed. All day. All night too. And now, finally, I am up. I've eaten. I'm having coffee. I ate breakfast cereal today. I guess that's it. I can go back to bed now.

Monday, 18 September 2017

Does It Matter Which Way You Put On Sweatpants?

Does it really matter which way you put on pants, particularly sweatpants. I know that anything with a zipper has a front and back that matter. I suspect that tight fitting things like leggings have a true front and back, especially if you are a woman with a curvy back end. You don't want all that backside fabric hanging off your front.

Then there are the more causual clothes; jogging pants, sweat pants, lounge pants, things which generally resemble pajamas. These pants seem to have no real differential in thier cut from front to rear other than any pocket slots not running parallel to the seams. This is a good thing for me, since putting on pants is such a challenge these days.

This morning Kathy, my HCA, dressed me, putting on some nice lounge pants and a nice pair of underwear. I was set for the day, except for about an hour later when I went to go pee and made a real mess of it. So I had to change. I reached down deep for the bottom drawer of my dresser and pulled out another pair of casual, lounge type pants. I grabbed another pair of underwear from the top drawer of my dresser. Then the real work began.

I used the sling to transfer onto the bed. Laying down is the only way I can dress myself these days without falling over. From that laying position I yarded and pulled, twisted and turned, grunted and rested, until I finally managed to get pant legs off of my legs. I bundled up the damp clothing and weakly threw it towards the clothes hamper. Next, putting pants on.

The way I do this is to lay the pants out over my legs, then put in one leg. I pull it all the way up, as high as I can go. It takes a lot of effort and time just to get one leg done. Then, I roll over, such as I can, and repeat the lengthy and tiring for the opposite leg. That's when I noticed it this morning, that stupid label that's supposed to be at the back of my pants. There it was, front and center. My pants were on backwards.

At that moment, I had two choices. I could take my pants off and start all over again, or I could just leave them the way they were, backwards. Hence the question. Does it really matter which way I wear these pants, frontwards or backwards? I can tell you this, from a wheelchair it makes no difference whatsoever. I could wear them backwards all day long and nobody would notice. If I was walking, it might make a difference. Then again, if I was walking, I wouldn't be so upset about redressing myself with pants on frontwards.

It's a heck of a lot of work, putting on pants. Today I wore mine backwards. I guess that answers the question.

Sunday, 17 September 2017

From A Real Person

I have no plans for today, or rather my plan is to do nothing today. I'm not totally sure if this will be the case; with not plans today, anything could happen. It certainly wouldn't hurt me to get out in my PWC for a bit, except that will wear me out for the day. On the other hand, so what? I have no plans, not even that afore mentioned plan to do nothing.

As it becomes increasingling difficult to lift and function, I become increasingly willing to allow myself to sit all day, write in my blog, read and post on Facebook, or watch something on Netflix. Note that all of these are not just passive things, but none of them have any form of direct human interaction. Sure we can chat on Facebook, but you are a thousand miles from me. If you are near me, then come visit. I need the human interaction.

Nevertheless, as weakness grows my world continues to shrink. I can still get in and out of my power wheelchair thanks to my sling. The challenge is handling whatever else comes along. It's even getting tiring to hold the joystick in one place while wheeling along. Grocery bags can be slung on the chair. Odds and ends can be put in the backpack, now permanently resident on my PWC. There there is the issue of the dreaded condom catheters. The task of putting the catheter on, without any other tasks, is enough to wear me down for an hour or two.

I like being online. My fingers still work, mostly. My arms rest on my wheelchair arms, my wrists holding them up by resting on my laptop. I like the numbers and variety of people I meed online. It fills this empty gap when I sit home alone, wishing my world was not getting smaller, wishing someone would come visit me. Being online provides me with input and interaction.

Being onliine is especially valued given the amount of time I spend alone, in solitude. While I have plenty of people around me, there still seem to be many times when I find myself alone, wishing someone was here, wishing someone would come share this time and space I have. Sure, I have online friends. But nothing beats a real hug, a real cuddle, from a real peson.

Saturday, 16 September 2017

Brownies For Sleeping

I'm starting to get this medical marijuana thing. There are so many varied effects of cannabis. I can understand why the medical community, or at least some of them, have an issue with medical marijuana. You can't just stay "take this pill and this will happen". It's more like going down the rabbit hole and finding a bottle that says "Drink Me". You don't know for sure what will happen, but you are pretty sure it's going to be good.

Sleep is a good example. Eating a brownie two hours before bed, one that packs a real punch, almost guarantees a solid night of sleep. It doesn't mean it's easier getting to sleep, although it often is, especially if the brownie is really good. What it means is that once I am asleep, I stay that way. It's similar to the Zopiclone but without the vivid, weird dreams. So taking a strong brownie means no sleeping pills. You can see that but the unused sleeping pills on my dresser.

Another well known effect of marijuana is appetite. I have to say that doesn't work for me the way one might expect. In the early effect stages, perhaps an hour or so after ingesting, I acutally feel nauseous. I don't want to eat. When that wears off, as much as it does, I don't get hungry again. What happens is that I can eat, endlessly. I don't think about eating, but when food appears I am ready for it.

Then there is the downside, the constant feeling of being on the edge of being high, a feeling that lasts as much as 48 hours. I have this sense of ease about me, where I see things but don't react to them, where my hearing in my working ear seems enhanced, where I am sleepy but not tired. On the other hand, it's also where my brain feels only marginally connected to my body. Well, perhaps this isn't a downside. Perhaps this is how it is supposed to work.

I will keep eating the brownies at night. I'm not so sure about the recommended cookie during the day. Being high makes it a challenge to be a good host, unless your guests are high too. At night time, however, getting that deep, relaxed sleep is worth being a little buzzed the next morning. So now, thanks to ALS, I am a drunken, pot-smoking, spaced out something or other. I can take it.

Friday, 15 September 2017

Rescue Me

I had to be rescued today.

I thought I had everything under control. I was safe in bed, wanting to get up. All I had to do was slide the sling over to my bed, shimmy it underneath myself, and lift myself up. Unfortunately, as I twisted to get the sling, my leg fell out of bed, my left leg. As it slid off the bed, bouncing over the bedframe, it lodged my foot under the wheel of my wheelchair. That left me unable to sit up or shimmy over the sling in any way at all.

My foot was only lightly jammed. For any normal person, it would have been no problem at all to lift their leg up and out. Only my legs don't lift anymore. They haven't for a long time. Up until recently I could lift my legs up, individually, with my arms. So even without leg power, a short time ago I simply would have grabbed my leg and lifted it. Alas, now that my arms are in full and rapid decline, I can't even do that anymore.

Now the first question some might ask is where HomeCare was in all of this. Well, Home Care Aides were both the assistants in authoring this misfortune, and the angels coming to the rescue. Early this morning, ahead of schedule, Edith arrived. She is not my favourite HCA, but that doesn't really matter. What matters is she was early and immediately told me she was in a hurry. I knew what that meant. No exercises for sure. Rushed shower time. Rushed dressing time. No breakfast. That's just the way it is with Edith; she is on-call for coverage, on salary with CBI HomeCare, and always overbooked.

When Edith arrived, I looked at my clock. It said 9:15 AM. That may not seem early to you, but for me it is barely past sunrise as far as I am concerned. I considered what was happening and told Edith I would stay in bed. What I forgot to ask is for her to get me dressed enough that I could get up on my own, and to position the sling underneath me so I would be able to get up easily. I was not fully functional; I was not yet awake enough to contemplate future needs.

This whole gettting up and dressed is something I can no longer do on my own. So when I want to sleep in, or sleep longer, or just stay in bed for the day, I still get up to go to the bathroom, take my pills, and get dressed. Then I get back into bed, on the sling, and while away my hours. What that means is when I finally do want to get up, if at all, I just have to sling myself into my manual wheelchair, something I can still do on my own.

This morning that whole process fell apart. I found myself in bed, waking up at around 2:00 PM, with no clothes on and no sling. So, I tried to get up. That's how my day began. Needing rescue.

Thursday, 14 September 2017

Laundry And Pictures

I didn't write yesterday. I slept instead, something that is happening more and more.

My hall must be getting longer. I am exhausted from rolling down to the laundry room and back. My laundry is getting heavier too. I notice how hard it is to pick up each piece and put it in the washing machine. This difficulty makes me reluctant to do laundry. When I leave it for a few days, instead of one or two loads, I have four. That takes even more out of me. No matter what I do, my laundry days are coming to an end.

Today, fortunately, Jade is here helping with the work. Still, I have my part to do. Having someone here doesn't mean I can offload all my chores, although if it were up to Jade, I would certainly be sitting and doing nothing, just resting. Travis too. He's in the kitchen cooking up a storm. He got the ham out of the freezer last night in preparation for dinner tonight. We have already discussed preparation approaches. I think I might just leave this up to him. Once again, having help is wonderful. Once again I have to convince myself to accept it, or ask for it.

Travis and Jade are also helping me with my picture frames. I've had these frames sitting for quite some time, waiting for me to have the energy and enthusiasm to put pictures in them, to hang them on the wall. Travis got busy and hung the frames. They look odd with the stock pictures, so I am near compelled to choose pictures, setting up pictures of my children, grandchildren, and my own life. Once again, having someone here to help made it worth doing, and easier to get done.

Now I get to rest for a bit. The first loads of laundry are in the machines. The pictures of my grandchildren are in the frame and on the wall. The pictures of my life are set up, with the frame waiting to be hung on the wall once Travis is finished making breakfast. The only remaining challenge is the frame with pictures of my children. Carla refuses to give me any, so I am having to make do with what I have. No matter, I have enough to remind me of what a great time I've had as a Dad, and how much I love my kids. That's all that really matters.

Tuesday, 12 September 2017

Swinging In The Sling

I am up and out of bed. It only took me an hour. It's not that Home Care didn't come. Kathy was here, earlier. I just didn't want to get out of bed. So instead she put socks and underwear on me, positioned the sling so I could get out of bed, and let me sleep. I slept another couple of hours, then started the labourious process of getting myself up.

First comes the sling. This is getting increasingly difficult for me, especially when it comes to the part of the sling which goes between my legs. I can barely reach down to get the straps now that it takes so much for me to sit up. Instead I now use the grabby stick to grab at the unseen, occasionally surprising myself with where the grabby part of that stick ends up. Usually, after a couple of random grabs, I get a strap. Fortunately the straps are typically close together, so once I have one, I have the other.

Now I am ready to attach the sling to the lift. Remember that as I do all of this, I remain flat on my back, at best flopping over from sit to side by grabbing the M-rails I now have on both sides of my bed. There is no sitting up, although I can slant a little upwards on my elbow with some extreme effort. Nonetheless, the lift itself comes right down onto my belly, so attaching the straps is fairly simple, except that I have to hold my now weakened arms up in the air to do the attachment. Yet, I do it.

Now that I am in the sling, the lift process is fairly easy. I push a button. I go up. I push a different button. I go down. The difficult part is the sideways motion needed to move myself from bed to chair. On a regular basis the lift in the sling will leave me in a place where my arms have nothing to grab, no way to propel myself sideways. The solution to this is to lower myself to where my arms can touch my bed, to where I can grab a sheet to pull myself. The only issue is that this lower position often involves my rear in light contact with the bed as well, creating drag as I drag myself into place.

Having done all of the above, I find myself in mid-air next to my bed. Now I begin groping for the appropriate chair, hoping that it's in a position for an easy grab. Sometimes it is, sometimes it isn't. This morning, for example, my wheelchair had rolled just out of my reach. In order to get it, I had to lower myself to the floor, fall over towards the chair, pull it to a point where I had a hand hold, then lift myself up with the sling again to where I could get into the chair.

In some ways its kind of fun, flying back and forth across my room in the sling, held aloft by the lift. I feel like Baron Harkonnen of Dune, with his insane ceiling traversing sling designed to hold his massive bulk, able to pull heart plugs out of those who had fallen out of favour. You see, even though this process can be tedious and difficult, I can still have fun in my mind.

Of course, that's the deal with ALS, isn't it? My mind is sharp, my imagination fully functioning, my awareness of both irony and joy complete. The kids see my sling and lift as a fun ride. Once I am in it, I try to do that too. Then, alas, I must return once again to my reality, into my wheelchair, slung no more. Or maybe not. Maybe one day I should do what the kids do, and sit in my sling, swinging away, for an hour, maybe two, forgetting that my reality awaits on wheels below. Maybe, just maybe.

Monday, 11 September 2017

I Need A New GP

I've been having some issues with my Family Doctor across the street. I've already written about these issues. Lately I have been casting about, looking for another doctor, although I have taken no action in that direction. I was hoping things might settle down and I might work things out with my current doctor. Changing horses in mid-race is never a good idea. Right now, as I move towards needing a doctor to provide MAID sometime in the not too distant future, stability in my health care situation is important.

Unfortunately, stability will not be. I called my doctor's office this morning to make an appointment. I was politely informed that my current doctor has declined to offer me any further appointments or any further care. The requirements for a person with ALS are more than he feels he is able to provide from within the confines of an outpatient situation. In other words, working with me is too much work.

I get it. Prescription renewals over the phone generate little to no revenue. Visits with me can be more complicated thanks to wheelchair access, special medical needs, and now the added weight of MAID. For some doctors, it's just too much work for too little money. He has an expensive office and undoubtedly lots of bills. Having me as a patient simply did not add positively to his business mix.

It's kind of okay in some ways. It certainly forces my hand in terms of gettting a new doctor. The ALS clinic wants me to have some form of GP coverage, to handle non-neurological issues like bladder infections and blood pressure medications. Of course I would not need help with any of this stuff were in not for ALS. The bladder infections are from my catheter. My catheter is because my legs don't work. My legs don't work because of ALS. My various heart medications would be easy to refill were it not for my lack of mobility, that lack thanks to ALS.

Most of the challenges in my life these days relate to dealing with ALS. My emotional challenges, my physical challenges, all of these are made much worse, much less manageable thanks to ALS. Let's hope my next doctor realizes it in a kinder way than my last. Now, off to find another GP.

Sunday, 10 September 2017

A Potluck Funeral

I'm going to meet someone for coffee, someone I met online. This is a scary business, meeting new people at this stage in my progression. I have to ask myself why I am doing this, why I am even bothering to meet people. Here I am one day making end of life plans, and then the next day making plans for a date. What I think it shows is that planning for things to come doesn't mean life today has to end. After all, I'm still alive today. I want one more kick a the cat, one more chance at seduction.

This whole end of life planning has been going on for a while with me. Part of it has been the disposal process, getting rid of things I neither want nor need, things that are taking up space in my home without adding value to my life. It makes sense to lighten the load so that when the time comes, there's a lot less for my brother Peter to deal with. Why should he had to get rid of my extra, unneeded furniture when there are those around me who can make good use of it? Why should he have to throw away all my clothes when there are those around me who would like some of it, and in the end there is a GoodWill bin across the street at the mall.

The next big step in the death planning process is to identify a funeral home and pre-pay for my cremation. I don't have the money for a fancy funeral, nor does it seem a good use of money in my mind. Better to take that money, rent a hall and throw a giant party with the wine and food I leave behind. After all, I plan on dying with a full fridge, a full pantry, a full freezer, a full liquor cabinet, and a full wine rack. It will be interesting to see how successful I am in that plan.

Over the next few days I will contact several funeral homes. Of course they will all want me to come in, so they can try to upsell me to the best casket on the floor. It will likely change their approach when I tell them I have ALS and have spent all my money trying to live, rather than worrying about what happens after I die. Still, there are costs associated with dying. Better to have a plan for them in advance.

After that comes the fun part, arranging my post-mortem party. Since I don't know for sure when I am going to die, notwithstanding having MAID plans, I can't do too much on that front. For that, I will depend on Peter. I'm pretty sure he knows how to throw a party, especially with all the food and drink supplied. Anything missing can be brought by others. Imaging that. A Potluck funeral.

Saturday, 9 September 2017


I have been thinking for a couple of days as to whether or not I should write this post. What I am about to say will create some consternation for some, upset others, and find complete understanding and agreement with some of you. In the end, this is my story, and this part of it is an important turning point.

I contacted the Alberta Health Services Medical Assistance In Dying program on Thursday. I let them know who I was, where I was, and that I would like to talk to them. Before I go any further, there is a process here, and you can't simply call them up and say "I want to die." Here are the criterion for MAID, just to start the proces rolling.

241.2 (1) A person may receive medical assistance in dying only if they meet all of the following criteria:
a) they are eligible — or, but for any applicable minimum period of residence or waiting
period, would be eligible — for health services funded by a government in Canada;
b) they are at least 18 years of age and capable of making decisions with respect to their
c) they have a grievous and irremediable medical condition;
d) they have made a voluntary request for medical assistance in dying that, in particular, was
not made as a result of external pressure; and
e) they give informed consent to receive medical assistance in dying after having been
informed of the means that are available to relieve their suffering, including palliative care.

(2) A person has a grievous and irremediable medical condition only if they meet all of the following
a) they have a serious and incurable illness, disease or disability;
b) they are in an advanced state of irreversible decline in capability;
c) that illness, disease or disability or that state of decline causes them enduring physical or
psychological suffering that is intolerable to them and that cannot be relieved under
conditions that they consider acceptable; and
d) their natural death has become reasonably foreseeable, taking into account all of their
medical circumstances, without a prognosis necessarily having been made as to the specific
length of time that they have remaining.

In short, I most certainly qualify, even in my current state, let alone when the time comes. Even that doesn't mean I can just ask for the big pill. I have to go through two separate assessments, with two separate physicians. Then, even after all that, a third physician will talk me through the process to confirm that this is what I really want. It's not easy to die with medical help; a well planned suicide is actually easier. I'm just afraid of screwing it up.

Simple starting this process does not mean I want to finish it any time soon. The assessment will leave me in a place where I have up to a year to act on it. With that out of the way, it will be one less hurdle when the time comes. I want to make this easier for myself, not more difficult. I am in no hurry, but when that day dawns, I don't want to start a lengthy process right then. I want the process out of the way so I can get on with it.

There will be some of you who will tell me it is a sin to take my own life. I'm not. ALS took my life a long time ago. I've already outlived most pALS in my cohort. I do not want to live on machines, at least not the way I feel today. I don't know if that will change, but this process allows me to change my mind right up to the last minute.

There will be some who question my timing, as if any time was too soon, and certainly this time is too soon. All I can say is you do not live the life I life. You do not suffer as I suffer, or feel the pain I feel. This is a planning step, not an action step. I'm getting ready to die, just as most of you will do at some point in your life.

If you are one of those who feels that life is sacred, I would disagree. If life was so sacred, why does God allow so many people to die in such horrible ways? There is nothing sacred about disease, disaster, dementia, and so many other ways to die. Death is not dignified, let alone sacred. Furthermore, I am not ending my own life. ALS is doing that for me, has already done that for me. I am just doing what doctors do for a great many of their patients. When the time comes, I will simply expedite matters. Nothing, nothing at all, will stop my slow, creeping death. All I want, when the time comes, is to expedite what God has done to me already.

If you ask about God's plan for my life, I ask you this in return. What if God's plan for my life is to leave it in as dignified a manner as possible using MAID? Perhaps God wants me to show others that life is for the living, that dying is a process which need not be long, drawn-out, and ugly. Perhaps God wants me to pave the way. And in truth, if Heaven is such a wonderful place, why delay?

In the end, the key here is to remember that this is preparation. People who prepare for their own funeral are lauded. Mortuaries run TV commercials encouraging preparation. That's what I am doing, preparing. How it works out is in the future. That is yet to come.

Friday, 8 September 2017

It's The Drugs, Man

I ate breakfast today, poached eggs on toast with a bit of cheese and tomato along with a pan-fried chicken leg nicely spiced. It was a good breakfast, and it was the first time I've felt really hungry in a few days, the first time I've actually felt like eating, seeing it as a pleasure rather than as a requirement.

You see, I've been battling this low grade bladder infection for a few days know. Yesterday it started to heat up, the night before being one where I was up every hour to go pee, plus I soiled another pair of pants by peeing in my sleep. This excessive urination is a sure sign of a mild bladder infection. Along with excess urination, I was tired, more than normally tired, even after a full day in bed. Then, yesterday afternoon, I started to develop a fever. This one was going to be a problem.

I'm very good at diagnosing these bladder infections myself; I've had enough of them. Quite possibly it could be one of these nasty bugs that takes me out in the end. For now, I have something called "Monurol". It's actually fosfomycin tromethamine, a synthetic, broad spectrum, bactericidal antibiotic. I mix a pouch of this stuff up, which they have kindly flavoured orange, and drink it down in a half cup of water. Then, in a matter of hours, it starts killing off the nasty bugs.

Last night I slept well. I was not up every hour to go pee. I did not soil the bed or myself. This morning I woke up actually feeling like I might get out of bed. I wanted breakfast. I am still hungry after a very good breakfast. I will likely eat more of that fried chicken today. So, I would say the Monurol did its job.

Now, if only the rest of my medications worked as rapidly and as well. Maybe my body would start to get better. I know. I'm only dreaming. It's the drugs, man.

Thursday, 7 September 2017

I Can Still Breathe

I slept yesterday, all day. I got up in the morning to go to the bathroom. I took my pills. My HCA dressed me. Then I went back into bed and stayed there until just a few minutes ago. Yet here I am, still sleepy. It seems that sleep is my greatest need these days. I didn't eat yesterday, and didn't mind it. I didn't have anything to drink yesterday, yet I still peed about 2 litres. I did no exercises, no movements, nothing. So why am I tired right now?

Maybe I am fighting an infection. Maybe this is just ALS having its way with me. I can't tell. Nobody can tell for sure. I can get tested for an infection but often the tests don't pick up the minor infections that can make me feel like this. It has to get serious enough to where I have a fever before it really shows up in blood and urine tests. Then again, the weakness that I feel is another part of the disease, so maybe that's it.

The problem here is the minor nature of change with ALS. This can happen, then sort of settle down, then happen a bit more, and so on and so on, until a significant event happens to prove the process. For example, I noticed yesterday that my arm seemed heavy, that lifting a pillow across the bed was very difficult. I've noticed the creeping weakness in my arms for a while, a couple of years really, and now it is truly noticeable.

So when I say I notice that I am having jaw issues, this is not a simple perception. I noticed on Monday that I had trouble opening my mouth wide enough to eat a sandwich. It was not a particularly large sandwich. My jaw just isn't as strong as it used to be. Lots of people might dismiss this, saying I always bite off too much, or maybe I was just tired, or that happens to all of us once in a while. What doesn't happen to all of us is the daily incrementalism of ALS. Soon my mouth won't open wide enough for food, my arms won't be strong enough to life themselves let alone a fork full of food or a pillow. Soon I will lose the ability to drink a sip of water.

Until then, I will eat what I can, drink what I can, and hope this exhaustion passes at some point today. That's as good as it gets. At least I can still breathe.

Tuesday, 5 September 2017

Alfred Hitchcock

Terror is often accompanied by suspense in the unfolding of a thrilling narrative - or, to put it another way, a story which gives the reader a feeling of terror necessarily contains a certain measure of suspense. Alfred Hitchcock

Alfred Hitchcock knew how to scare people. The famous movie and TV director knew what it took to get people sufficiently engaged in a story, how to twist that engagement into fear and even terror at times. He admitted himself that this was forte, telling Newsweek back in 1956, "If I made Cinderella, the audience would immediately be looking for a body in the coach."

The way he famously built terror and fear into his movies was to build suspension, tension between a known, terrible outcome and the time left to prevent it. He knew that the ticking of the time bomb, the knowledge of where the knife was hidden, or the man behind the door were all more frightening if you could build suspense and fear.

What was not frightening, after the initial event and certainly not over time, was the even itself. The bomb goes boom. The knife slashes. The killer pounces. All of those things happen quickly, and only once. However the clock, the knife, the killer, all these things held as a threat, as a future possibility, as an intended outcome, all build fear and suspense until the climax. He himself once said, "There is no terror in the bang, only in the anticipation of it."

I am, more and more these days, anticipating the end of my life. There is no terror in death, only in the anticipation of it. I am not afraid of being dead. It's the slow, agonizing process taking bits and bits more each day that is truly frightening. It's inside my head now, constantly, that one of these days the losses will reach a point where I simply cannot survive them. The question that drives the terror is "How long?" and, perhaps more importantly, "What will I go through to get there?"

This is not just fear. Living like this is its own horror film, it's own suspense, it's own kind of terror. I'm feeling like my life is directed by Alfred Hitchcock, that he is making each downward change in my body a kind of link in the chain, a link inevitably leading to death. I am not sure what is worse, the destination or the journey. Personally, I don't like this movie. I'd like to leave the theatre but I can't. I am the star of the show.

Monday, 4 September 2017


Peter is gone. Kathy, my HCA, is finished and gone. It sure is quiet around here when everyone is gone, except me. I'm not sure I like that quiet. I like the sound of people around me. I like the feel of others sharing my space and home. It feels safe, like a comforter wrapped round me on a cold day. It feels warm, even though the temperature is unchanged in any way. I like having someone near me.

Of course the downside to all this extroversion and requirement for people is that my life doesn't work that way these days. I am alone most of the time. Sure, there are frequently guests in my home. Sure, I have Home Care every morning. It's the gaps in between, and there are many of them, where the quiet solitude becomes truly apparent.

I admit there are days when I like this, when I need a rest from the commotion of day to day livng. Today is not one of those days. Fortunately Todd and Jessica will be here shortly, helping me fix my Kuerig problem. They are bring theirs over and swapping it with mine. Todd thinks he can fix it. That would be good. What's better is that they will come and visit. They will spend time with me. They will help with things around my apartment. It will be noisy again.

They will leave after they are done. The quietude will once again descend.  I will be alone. Again. I can live with this, on occasion even enjoy it. In the end, however, I like people. I like having them here. Especially when there is a close bond, like my bond with Peter, like my bond with my good friends. After they leave, I will probably sleep. That's what life is like now.

It's getting more difficult for me these days, tougher to keep going, more challenging to get out of bed and stay up for the day. I am getting more difficult, too. I have less strength, less energy, less will to do things. I have a shorter string, an earlier snapping point, a greater emotional response to things which truly mean nothing. It's all of apiece, this disease, this need for help, this want of companionship. I wish it wasn't this way. But it is.

Sunday, 3 September 2017

Nightmare Nap

Zopliclone makes for nightmares. It's one of the known effects of the drug. It can also cause an intense, deep sleep, so dense that you don't wake up even for the most common of things, like going pee. This all becomes more powerful when your body is tired while your mind is not ready to sleep yet, like last night.

I went to be at around 9:30 PM, and couldn't sleep. I was exhausted from drink and lack of sleep on Friday night. Yet there was no rest for the wicked. So I tooke the pill. It took about an hour to cut in. From then on I knew of nothing, no dreams, no nightmares, nothing, until about 10:45 AM on Saturday morning.

Fortunatel Home Care was a bit late, so I was awake when Edith got here. I was also wet. I had slept right through going pee at some point in the night. Fortunately I take precautions for this. The damage was limited; a wet towel and a little dampness on my sheets. I can always wash the sheets and towels, so no worries.

Edith arrived, got me up, toileted, and dressed. Peter made breakfast. I enjoyed. But by 2:00 PM I was tired again. So off I went for a nap. This is when the nightmares came in. They were both very frightening, involving life and death, mostly my death. There is kind of a theme in all my dreams and nightmares these days, a theme where I am at risk of dying. Sometimes I wake up just as death arrives.

When I did wake up, at about 4:30 PM, I came out to Peter having a great time watching "Big Trouble In Little China", an absolute classic, with Kurt Russell talking like John Wayne, and tons of Chinese stereotyping. The first thing he said to me was "You were having yourself quite the nightmare." Apparently I was calling out in my sleep.

Needless to say, the nap was not highly effective. I slept, such as it was. But I am still very tired. Tonight will be another early night. It takes so much these days to recover from exertion. It's a combination of age and ALS, plus perhaps the odd nightmare.

Saturday, 2 September 2017


So, my brother Peter is here this weekend. I know this because there is an empty bottle of 12 year old Bowmore Single Malt Scotch Whisky sitting in front of me. Oh, and also because I am in a very good mood today. I get that way when my brothers are around. I love having them visit.

I am very fortunate to have a tremendous group of people around me these days, brothers included. I have them, my friends, over to visit, to share meals, to share wine, all the time. But there is nothing quite like the history, the shared experiences, the shared misery of our younger years. I simply need to whisper about chickens and Peter shivers as I do. We can talk about life experiences, like travel or adventure, and know, understand, feel the same things in different ways.

It's true that I have had a terrific few years. Thanks to David, Cheryl, Katherine, Ricky, Mike, and so many others, I have had adventures galore. Most recently it was Ireland and Scotland. Before that it was down to my brother Adam's place. Last year it was road tripping with Katherine. And so on. But the best times are when my brothers come to visit me. I'm not sure what it is, but it makes me happy.

Even better, my brother Jim is on his way here today. He will stay the night; at least I hope he will. We'll talk, remember our childhood, think about where we came from, about where we are now. Perhaps Pete and Jim will go out to Karaoke. I will not. These days going out is too much of a hassle for me. I'll stay home, awaiting their return. I don't mind. I am happy that they get time together too.

Then, suddenly, it will be tomorrow. Today will have gone, leaving only the memory. This is how life works. You live. You experience. Time passes. you remember. In the end, that is all we have, today and memories.Not a bad deal when you think about it. Today is as good as we make it. Memories are that way too, as good as we make them.