Monday, 31 August 2015

I Woke Up Feeling Good

Yesterday was a tough day. By the end of the day I had gone through 4 pairs of underwear, one pair of jeans, one bedsheet and two towels. Late in the afternoon my body finally began to settle down. Kate, her friend Marg, and Dion were over for Sunday dinner. I made an Arab style chicken dish. Kate brought a potato-vegetable dish, and Dion supplied us with Peach Cobbler. My stomach seemed fine with all of this.

Kate and Marg had to do some work with their wine; they are making a batch here under my supervision. By the time they were done and everyone left, it was 10:30 PM, and I was beat. I decided to head to bed, after one more round in the bathroom. Just to be sure I could sleep, I took a Zopiclone. It worked. I was out rock solid until 8:30 AM this morning. Even then, when I first awoke I said to myself "too early" and rolled back into sleep until my Monday HCA arrived at 10:15 AM.

That's when it happened, the oddest of things. This morning I woke up feeling good, really good, better than I have in a long time. I don't know if it was the 10 hours of uninterrupted sleep, or the knock-out power of the Zopiclone, or the exhaustion in my body, or a combination of all those things and more. All I know is that this morning, for the first time in as long as I can remember, I woke up without resenting the fact that I was awake; I woke up ready and willing to get out of bed, to start my day.

It's been forever since I felt this way, since I woke up looking forward to the day. This is not to say that the impact of ALS is gone; it's still here, here for sure in all its frustration and pain. After only a couple of hours of waking time I am already exhausted and ready to sleep again. What's important here is not that ALS is still with me, but that, including ALS, I woke up this morning feeling good. I'm not sure how it happened, but I'll take it!

Sunday, 30 August 2015

Going, Just In Case

I'm struggling today, starting from this morning, with a mild case of the "Green Apple Quickstep". Yes, it's what you think. I suspect my diet yesterday has something to do with it. Most of it consisted of watermelon, oranges, cucumbers, and tiny tomatoes. There was a small bit of cheese fondue in there, with some bread and sausage, but nothing matching the proportions of the fruit, especially the watermelon.

For most folks, a day like this would be a mere inconvenience, a few extra trips to the washroom. For me, it's a bit different, particularly the "quickstep" part. I live with a body which refuses to move quickly, where nothing is easy. Today I live with the fear and certainty that at least one of the trips to the toilet will not occur in a timely fashion, or that blast of gas will contain an unpleasant side effect.

So far, I've gone through three pair of underwear and one bedsheet, the fitted one for the bottom; the rest look fine. There's been a fair bit of rinsing going on, and I now have a load of laundry in the washing machine, plus the half load of stuff that was just lying around. It's a messy business, all this. I think I've washed my hands at least a dozen times since getting out of bed, along with cleaning other parts of my anatomy very thoroughly.

It would be nice if this kind of problem could happen without it being a major event. Alas, it won't. It would be nice if I could have something vaguely resembling the ability to move about quickly when dealing with this kind of bodily distress. Alas, I don't. What I have is an anticipatory gamble with long periods of waiting just to be sure. So far it's taken the better part of my day.

I've managed to manage. That is the best I can hope to do. Now if you will excuse me, I think I need to go somewhere, just in case something might happen.

Saturday, 29 August 2015

Who Ya Gonna Call

I was at home alone last night. This is never a good thing, me being alone for any length of time. It's when I am home alone that I begin to think about my situation, I begin to chew on the realities of my life these days, the loss and limitations. When I am home alone, I rarely think of good and wonderful things; it's just the way I am. As an extrovert, I need the company of others to fee truly alive.

It's easy to see whey there are crisis lines and help lines out there. I suspect for a great many people that feeling of being alone compounds so many of their other feelings. I can feel it for myself. When I sit at home alone, I ponder on the loneliness of my situation, the solitariness of having this illness, of living this life. Even with all the people I have in my life, I still feel very alone much of the time.

Who do I call when I feel like this? To whom can I reach out? The reality is that these feelings often come late at night, long past when others who would truly understand my situation are well into sleep. This is no crisis; calling a crisis line seems silly. I don't want to commit suicide, so calling a suicide line is seems equally silly. In fact it's hard to think of anyone to call; this situation is so unique, so unusual, that there are very few who would truly understand it.

Of course what I really need to do is to go to bed, something I always do eventually. What I need is to get some rest and start a new day, get another look at things. This, unfortunately, leads to my next challenge, when I wake up in the morning and wonder why I should bother to get out of bed. My book is in bed with me. I am comfortable. I am safe. I won't have to endure the struggle and pain of getting up.

But then reality sets in. I have to go to the bathroom. I have company coming today. I am hosting a fondue party. I need to prepare. That's my motivator, responsibility. I don't really have to do anything; eventually I won't be able to do anything. But I feel responsible; I've invited people over so I should do my best to prepare. You see, I have a focus, something to do. It means people will be with me this evening. I will come alive once again, like a flower bursting into bloom only when it is with a host of other flowers.

That's what keeps me going, what gives me purpose; the other people in my life. When they go, so will I. For now, the are here, sticking around for a rough ride. Me too.

Friday, 28 August 2015

New HCA, New Time

Home Care came early today; well, early for me. The Home Care Aide arrived at 10:00 AM, something which is not necessarily a bad thing. I've been trying to get up earlier, trying to start my day before lunch. The HCA was new, another in a long line. Still, we managed to make it work.

When I first started with Home Care, it was only for my Range of Motion exercises. I would get myself up in the mornings, have my shower, then, while waiting for the HCA, I would eat some breakfast, have a coffee, and maybe even do some writing. This schedule meant that the HCA could arrive at sometime around 1:00 PM and it would be good.

Then things changed. As the weakness in my core continued to get more pronounced, I began to wobble too much in the shower. I also found that the transfer from the shower bench onto my wheelchair was becoming increasingly dangerous, with the wheelchair easily sliding on the wet floor. So I asked Home Care to come and assist me during my shower, the role of the HCA to be there should I need help, and to help me get in and out of the shower.

As my core strength weakened even more, I found myself asking the HCA to assist me with putting on various skin creams and, eventually, even with powdering my "private" areas to keep dampness to a minimum. All of this increase in need and attendance made a 1:00 PM start rather late, with the HCA often not finishing with me before 3:00 PM. So I asked the Home Care agency to reschedule my time block so that it would start sometime between 10:00 AM and 11:00 AM.

The problem is this. Most Home Care clients want help at the start of their day, or at the end of their day. That means the HCA's are fully booked between 8:00 AM and noon, and then again between 4:00 PM and 8:00 PM. The evening block means nothing to me, but the morning block is important. It's tough to get someone here before 11:30 AM.

It's meant a variety of start times for care. Some days I lay in bed waiting until nearly noon. Other days someone shows up at 10:30 AM. And today another new HCA showed up, this time at 10:00 AM. It's tough to plan a day with this kind of variability. On the other hand, it's not like I have anything critical to do. Mostly, I just want consistency. The same HCA at approximately the same time, on Monday, Wednesday, and Friday. I don't see it as a lot to ask for, but apparently it is.

Thursday, 27 August 2015

The Morning After Clinic

Inevitably, the day after going to the ALS clinic I have a rough time. I think it has to do with the intensity of the day, all the focus on what is happening to my body, all the news good and bad, all the questions and answers. It's actually a tough day psychologically, even it the outcome of the day is relatively good news.

I say "relatively good news" because no matter what the results of all the measurements, no matter what the answers are to all the questions, no matter what the doctors have to say, I still have ALS, a terminal, untreatable, incurable illness. The outcome of the day is always the same; I am not getting better, no matter what.

So I look for the bright spots, words like "slowly" and "unchanged". I'm careful around the word "normal"; it's so subjective. I've lost a good deal of strength in my upper body and core muscles. I can tell when I go to pick things up or transfer. Yet the doctors cannot see that loss from what I once was because they are measuring from what they see as normal. It would be fair to say that my strength was somewhat above normal before all of this.

The best example of this was the female neurologist who first saw me yesterday. She was a slight young woman, tiny, the kind that I would once have lifted up with one arm. She does the strength test in my arms and cannot move them. Then my regular neurologist comes in and does the strength test. It hurt when he pushed as I tried to push back. I couldn't match him, something I once did easily. Picking up up a case of wine, or a new wine kit, was once a one-handed affair for me. Now I cannot do it without help.

Today my arms still hurt. My back is sore just because; it happens. My eyes are watering from the smoke in the air notwithstanding that all of my windows are closed. And I know, regardless of anything else, that I am weaker today. My strength may be going slowly, but go it does. I wish I could be more cheerful about all of this, recognizing how fortunate I am to have the time I have. I wish I could focus on all the good things in my life; there are plenty of them. But the day after clinic, I mostly feel like I have ALS.

Wednesday, 26 August 2015

Continued Slow Progression

It was another clinic day today, another trek to the deep south of Calgary to visit the team of medical professionals who measure, check and chart the progression of my ALS. The most significant comment of the day came from the neurologist. After interviewing and examining me, he told me something I already know, that I was "progressing slowly". While progression of ALS is inevitable, it's fortunate for me that the word "slowly" is a part of that progression.

There were other things up for discussion at the clinic today, the most significant of which is my weight. I have lost 10 pounds in the last couple of months. While on my multiple road trips during the Great Elevator Escape, I gained 12 pounds. It was suggested that I should lose that weight, as long as I kept my health together. Unfortunately I think the driver behind that weight loss was my ill health, most recently evidenced by my stay in hospital.

It's not that hospital food caused me to lose weight. It was the whole urosepsis thing. Every time I tell one of my doctors about it, they get a grim look on their face and comment on how serious this is, one going so far as to remind me that it could be fatal. No wonder I lost weight; apparently I was really, really sick. In fact I am still not fully recovered. It may take a while yet.

In terms of my general condition, I have lost, or am losing, core and upper body strength. It's measurable, but once again the progression is slow. This increasing weakness shows mostly in my inability to pick up heavy objects along with the persistent shaking in my hands when holding a cup of coffee or a glass of water. Once again, it's not much of a change from last time; it's changing slowly.

My respiration is stable; this, at least, is not changing. My core muscles may be weaker but it has not affected my ability to breath. This is one of the most significant measures for ALS progression; as long as you can breath on your own, you are doing well. Even the smoky conditions here in Calgary have apparently had little effect on my lung capacity.

Over all, I guess it's a good news story, sort of. I have ALS; that's the bad news. It is continuing in its slow progression. It looks like I will be here for a while yet; that's the good news.

Tuesday, 25 August 2015

Blog Entry 1,000

Blog entry 1,000; that's what this entry is. On November 22, 2012, I was diagnosed with ALS. On that Friday, I went away for the weekend with a group of my closest friends, along with my brother Peter, and share with them what had happened, what my diagnosis meant. We call it "the weekend of crying". The following Tuesday I flew to Vancouver to share the news with my Mom and Ray, and with my children.

Then, on Wednesday, November 28, 2012, I started this blog in the morning, before returning to work. Since then I have written about the terror and pain of ALS, the damage of this disease to my life and my body. I've written about my voyage of discovery, my travels of adventure, the sorrow and joy which are a part of everybody's life. I've shared many of the most intimate details of my life, of how ALS was changing me and my body. I've also shared my thoughts, philosophical and physical, as I live with ALS.

There were a great many days when I wondered if I would make it this far. These days I wonder how much farther I can go. I think of Anne Bolyne, Anne of a Thousand Days, the ill-fated second with of Henry VIII of England. I'm certainly going to last longer with ALS than she did as Queen. I doubt that I will make blog entry 2,000, but who knows. Wonderful things can happen; look at me and Katherine. My true hope is that I make it many more than 1,000 days with her.

Since my diagnosis, I've come to learn an awful lot about myself. This kind of situation makes for even more introspection than usual. Writing about it each day makes it more palpable; when you write, you cannot ignore. What's interesting to me is what others find interesting in my writing. The top entry in my blog was my post on running out of money, followed by a guest post from Sarah Coglianese. Serious entries, the tough parts, make up the rest of the top 10, including another guest post by my friend Chris Gordon.

As you might expect, the US and Canada are the source of most readers, yet there are people following this blog from the Ukraine, Russia, France, the UK, Sweden, Turkey, and even Australia. People read to see how I am doing, to learn more about ALS, to validate their own journey with this killer disease. Some read my poetry, prose and stories. Everyone has their own reason for visiting, for being a part of my life with ALS.

I will keep writing. There are days when I wonder if I should, when having written for 1,000 days seems enough, when I no longer feel relevant. There are even days when I wish I didn't have to write, yet it has become a discipline, almost an addiction. It means I write for the same reason I did when all of this started; I write because I must. And tomorrow will be blog entry 1,001.

Monday, 24 August 2015

Smoke In The Air

There is a haze in the air here in Calgary, a flat grey dust blocking the sky, filtering the sun from view, leaving it a dull yellow, occasionally orange as the thickness of smoke rises and falls. This is the fallout from forest fires in BC, Alberta and Washington, a smoke filled sky blocking the view both far and near, the filtering effect visible as little as a few hundred feet.

I've never much been bothered by stuff like this, mostly just ignoring it and powering my way through my day. This time, however, is different. This time I can feel the smoke in my eyes, smell it as I breathe, taste it in my throat, sense the pressure of it on my lungs. For the first time in my life, this kind of air pollution, natural as it may be, affects me. I know it has been tough for my children, especially those who have suffered from asthma over the years. I can see why.

It's never been a problem for me, until now. With this smoke covered sky I am finally having to come completely to grips with the reality that I am one of those people the news talks about, those people with weakened immune systems or other health problems, those people who should stay indoors in a situation like this, stay away from breathing in the contaminated air. It would appear that I am truly less than healthy, no longer able to shrug off something as simple as smoke from a distant forest fire.

How long this smoke will hang around is anybody's guess. The fires persist. The weather pattern will bring the ashen results here, over the Rockies and into Calgary. For the time being it means I will stay indoors, not that I really get out a lot. Today was enough to convince me, the pressure in my chest building up after only a short shopping trip. I can still feel it within me, still feel that tickling in my throat, that sense of impeded lung capacity. I'm going to have to take it easy. I am not as strong as I used to be.

Sunday, 23 August 2015

Another Bad Night

I'm finally up and active. Last night was a rough night on a number of fronts. First of all, I couldn't get to sleep, no matter what I tried. Yet, oddly enough, I didn't think of taking a sleeping pill until well past 3:00 AM, at which point I thought I really could get to sleep without it. Secondly, no matter what I did last night, I couldn't get comfortable. I wasn't in pain, per se; I was just plain sore and uncomfortable for much of the night. Finally, to top it all off, at about 3:00 AM, I had to go to the toilet. No jug for this problem; it was a full get up, transfer to the wheelchair, wheel to the bathroom, transfer to the toilet.

What makes the whole toilet thing really awkward is the loss of my core muscles. They have been weakening for a while. These are the muscles you use to "bear down", or to put it more plainly, push out the contents of your colon. For me, pushing has become more than just a little problematic. These days I am almost completely dependent on gravity, making the whole toileting process slow and arduous, along with just plain awkward.

If you want to know what it feels like, it's really easy. Next time you have to relieve yourself of some solid waste, go ahead and sit on the toilet. Then, don't move a muscle. You may find this difficult to do, as most of these muscles work automatically, without intervention, unless you really have a problem down there. Most of the time it's just sit and go.

The challenge for most people, in fact, is the reverse; how to stop these muscles from working when you don't want them to jump into action. So try it. Try sitting on the toilet without using those muscles, and see how long it takes for gravity to do its part. I can tell you, it takes a very long time, long enough that people begin to wonder if you are safe and alive in there.

I still have some muscle strength in my core; not much, but some. I can still control this process to some modest degree, usually in the act of retention versus expulsion. I still have excellent bowel control in one direction. It's the other direction which is problematic, especially at 3:00 AM.

Saturday, 22 August 2015


I did an FRS assessment. The Functional Rating Score is a way to measure how my body is doing, how much weaker it is getting from ALS. The FRS is a self-measurement which posits 12 questions about things like eating, breathing, movement and body strength. A normal score is 48. I scored a 28.

This is a declining score. My FRS was relatively stable for about a year and  a half. Then, when the elevator went out in my building, my symptoms started getting ever so slightly worse. Since then, the decline has continued, with increasing weakness in my upper body. I am hoping that the decline continues at its slow pace. The changes are mostly only noticeable from within; I see them, but I can mask them well so that most other people don't see them.

There is one change that fits in the "who'd a thunk it" category. It has to do with the shape of my thighs and upper legs. I have lost all muscular ability in my thighs and upper legs. This started to happen a few years ago and became truly profound when I went into the wheelchair a couple of years ago. Since then, my leg muscles have lost all ability. With the loss of muscular strength came atrophy, the muscles slowly losing form and shape over time. My upper legs have gone from being round and strong to being oval and flabby. This has had one less than useful side effect, beyond the obvious.

When I first went into my wheelchair. the shape of my upper legs meant that the held a relatively flat angle at my knees. This made my legs a level platform, perfect for acting as a human carrying tray. I could put something on my lap and it would rest there quite happily as I moved about in my chair, over surfaces smooth and rough, even over sills and bumps. Over time, however, that shape has changed. Somehow my flat lap is no longer level, but tilted ever so slightly frontwards.

This change in body shape means that things I put on my lap now have a tendency to slide forwards, off of my lap and onto the ground. My laundry basket no longer sits as I go to the laundry. My suitcases no longer rest steadily as I transit a parking lot into the hotel front door. I am not sure when or how all of this happened, but things have changed. My lap is no longer functional.

It's part of the hidden changes of ALS. Nobody would think to notice that my lap no longer works as a stable platform, that I have to steady things as I carry them. I've taken to trying to adjust my legs, but even that doesn't help. My FRS is a 28. I no longer have a functional lap. That's ALS in action.

Friday, 21 August 2015


"Today is a good day to die." It's a line Commander Worf used in an episode to Star Trek: Deep Space Nine. As a fictional character, he was able to look upon death as something worthy, something of value. All I see in death is an ending, unfortunately too soon, of an adventure well worth living.

If there were such a thing as a good day to die, today is the kind of day which could evoke that feeling. The sky is a solid blanket of wet grey, the edges thin shears of rain blocking everything more than a few blocks distant. The trees stand moist and limp, the road squishes as the cars rush by. It's cold, unseasonably so, unkind in its chill, miserable in its penetration. It's the kind of day where curses are born, where they live until the sun shines once again.

Rain is not a bad thing. In fact here in southern Alberta the farmers have been hoping for this kind of weather, for the kind of rain which will settle on the land and soak in, dampening the soil and watering the crops. This is not the pounding rain of a sudden summer storm, where it hits the ground damaging ever growing thing, then runs away in flash flood bursts which destroy river banks and inundate homes. This rain is a slow drenching, a solid moisture which settles gently on the land, seeping into every corner and crack, dripping into every opening, filling the land with precious liquid for future days.

It's just cold and dreary; that's all. It's just that kind of day which reminds you there will come an end, there will be a day when life shall pass away. It's that kind of day which immobilizes your spirit, stops you in your emotional tracks, the grey of the sky making your thoughts equally grey. It's the kind of day which you wish would only happen at night, when we are asleep, when moods are not dampened by the colour of the sky.

Tomorrow the sun will return. Tomorrow the skies will once again warm the ground at my feet, or rather under my wheels. Tomorrow the trees will shake off their dampness and rise up once again to greet the sun. Tomorrow I will see the horizon, the park in the distance. Tomorrow my body will feel the warmth of the sun. Tomorrow.

Thursday, 20 August 2015

I'm Bored

I'm bored. I admit it. I'm bored. I have nothing on my schedule today, no plans for anything at all. I have no meetings, no social activities, no shopping to do, no laundry to be done; nothing... other than writing this blog entry. I'm a grown man, not a six year old. There are plenty of things I could do, plenty of adventures, troubles I could get in to. Yet here I sit, my mind empty of possibility.

This actually causes me some significant concern. There is a time coming when my ability to do will become increasingly limited, when sitting at home with not plan nor schedule will become the daily routine of my life. I need to take advantage of this time, now, seize this day, the opportunities in it. Unfortunately I am having trouble figuring out what they are. Nothing springs to mind.

I suppose I could go sort out clothing, getting rid of stuff I no longer need. I suppose I could read more of my book about the wartime history of T. E. Lawrence, that intriguing figure made famous by the movie, Lawrence of Arabia. I suppose I could go shopping for nothing, or perhaps a few bits and pieces I could invent for myself as necessary. There's even Netflix, with thousands of drab entertainment choices spiced up with the odd truly interesting show.

It's not that there is nothing to do; there is always something to do, something to be done. It's just that all of it seems so inconsequential today, so unimportant, unappealing. This week I am staying home, resting, not going out at night. This week I am cutting out alcohol, resting my body as it recovers from my recent infection and sepsis. This week seems to be going on forever, as I await the opening of the gates of my social life once again.

I'm bored. I admit it. I think I'll watch TV. That's how bad it is.

Wednesday, 19 August 2015

Schedule Or Not

Home care came late today, well past noon. Perhaps it's a good thing that the Home Care Aide for Wednesday usually comes a bit late. I'm usually out late on Tuesday night, so the extra rest on a Wednesday morning is a good thing. The same with Friday mornings. I am usually out late on Thursday nights, so I don't mind a late start on Monday. Maybe I should start going out on Sunday nights, just to keep things even across the week.

It's odd the way my mind works sometimes, thinking it more important to take advantage of the late start rather than working to get the HCA here earlier. It seems like a natural move to then think about staying out late Sunday to take advantage of another late start. When you don't have a real schedule, there's nothing bad about starting your day after lunch has been served. The only real challenge is that it makes it hard to get a breakfast sandwich at Timmie's or McDonald's; they stop serving them at noon. On the other hand, they start serving them at 4:00 AM, and I have, on occasion, benefited from that timing.

The only real timing issue in my day revolves around making dinner. Sunday is family dinner and Wednesday is when it is, nominally, just Kate and me. For both of those days, I like to have dinner ready at roughly 6:00 PM. On Sunday it's no big deal. I arise at around noon; there is no home care. I get to take much of the afternoon to prepare. On Wednesday it is a bit more of a push. By the time exercises are done and my blog is written, it's usually near 3:00 PM. I am a bit slow at making dinner, so if I am lucky everything gets done on time. Other days that whole "roughly 6:00 PM" becomes very rough, often closing in on 7:00 PM.

Today I am going to make lasagna. I'll start with the sauce as soon as I am done writing. I'll slice cheese into strips as the sauce is cooking. With any luck the lasagna into the fridge to chill for an hour before I put it into the oven at 5:00 PM. That will make it ready for 6:00 PM. If all the bits and pieces come together, it will work. If not, what the hell; I don't actually have a schedule.

Tuesday, 18 August 2015

A Short Drive In The Hills

I went for a drive yesterday, a four hour wander through the foothills and forests of western Alberta. It wasn't planned that way. I was just going to the bank, or rather to a branch of my credit union. All I wanted to do was fix a mistake and put some money in to cover my mortgage. Yet somehow I ended up deep in the forests, pounding along a gravel logging road, looking for deer and moose. I know, it could happen to anyone. Right?

It all started with a mistake by my credit union; not a serious one but one involving a $15 charge. My branch is in downtown Calgary, right across from the CBE offices where I used to work. When things all started out here in Calgary, it was rather convenient. These days I try to avoid going downtown. There is a branch out in Cochrane, about a 20 minute drive from my apartment. It's a nice drive, taking me out of the city, through some lovely rolling hills, into the foothill countryside nearby. It's a lovely drive.

We headed out, made it to Cochrane, did the banking. At that point, Katherine looked at me and said, "Let's go for a drive to Canmore." She knew I had been trapped in hospital and home for a week, that the drive would make me feel better, the worries of the day and week having been heavy on me. I happily said yes and we headed down the road. That's when it happened, when the woods and hills reached out and snagged me on the way by. I told Katherine that I wanted to show ther "the cabin" where we, the gang, have visited for the last few years during November. It's where I went that first weekend after diagnosis.

The cabin is up in the hills, off the main road, along Alberta 40, also called the Forestry Trunk Road. This road weaves its way along the forested foothills, rising up and down through the cuts and curves of these shallow forerunners to the great peaks just off in the west. It's a drive through tightly packed forests pocketed with wilderness meadows, interspersed with the odd cattle ranch spread throughout. The road is tough, just like the people who live out here. It's a great drive.

Trouble began in earnest when we came to leave the cabin road. Rather than turning left and heading back towards the city, as any sane man would do, I decided to turn right to make the 100 km trek to Sundre, one of numerous small towns dotting the mountain edge of Alberta, a town along the Cowboy Trail dedicated to the dual mistresses of logging and ranching. For me it was a kind of drive through wonderland, past grounds screaming of opportunity for hunting and fishing, ending up following the Red Deer River as it headed out of the Rockies towards the great Canadian plains.

It was also a long drive. It took about 2 hours to get to Sundre through the back road, then about an hour to get back to Cochrane along the Cowboy Trail, after which came the return to Calgary. Our short drive ended up in a four hour clamber across hill and dale. It was a beautiful drive. Perhaps the only downside is that it left me very tired. I am not fully recovered yet. That would explain the 12 hours of sleep last night. Still, I loved it and would happily do it again.

Monday, 17 August 2015

I Want To Shit In Peace

I have a fairly open life. Certainly this blog makes it a more open life than many others. On top of that, however, is the daily care, home care workers, guests, whatever you may who are in my life constantly. They see me in my wheelchair. They see me in my underwear. A good many of them see me in various states of disrobe from lightly covered to completely naked. Women who have never met me before walk in to my bathroom to help me transfer my naked body from shower to chair. Friends who have known me for many years help me in and out of bed, on and off of toilets, in and out of cars.

Most every part of my life is exposed to scrutiny and subject to intrusion. There is, however, one moment of privacy, one small time in my day when I truly get to be alone with my thoughts and myself, without needed help or care, without someone being with me. That is the short period of time when I get to be alone in the bathroom, on the toilet. It's all I got, and I plan on defending it.

There are very few people who are comfortable sharing this most private of acts, this sacred time when your body does what everyone else's body does. Even though we all do it, we all pretty much want to do it alone. The truth is that even this act forces me to ask for help now and again, where I cannot get onto or off of toilets, or where I am unable to clean properly. I mourn for those lost moments of dignified privacy, that last bit where I feel my singularity is sacrosanct.

Even within this most hallowed hall, people feel free to wander. They interrupt because then need to check on me, they need to make sure I am all right. They interrupt because they are care workers, and making sure this function functions is a part of caring. They interrupt because of what they see as urgent, critical. They interrupt, when all I want is a few moments of private dignity.

I am losing a lot to ALS. Mostly I can adjust. All I ask for is what remains of my self-dignity, that small portion when I get to sit alone in my bathroom, awaiting the inevitable, thinking my thoughts, working my body, planning for what comes next. All I want is a little privacy, to be left alone for once. to shit in peace.

Sunday, 16 August 2015

Time To Think

One of the risks of having time alone is that I start to think about things. This never has a good outcome. As Katherine says, I need to learn to put this stuff down and focus elsewhere. It seems impossible for me to do that, it just keeps coming back. I try to shift my mind, reading statuses on Facebook, reading the news online, sometimes even going so far as to turn on the TV to watch a documentary; there are plenty of them.

Still, if I am alone and idle, this is where my mind goes. It starts with a simple, shallow resting examination of my thoughts and feelings. I ask myself what is going on in my emotional center. There I discover a mild anger at myself, or possibly at everything in general. It's the kind of anger I usually use to get myself moving, perhaps not so much anger as irritation at my own self-indulgence. "Get up. Get moving. Do something!" I take that emotion, using it to fuel the next step needed in my morning process, usually the energy needed to finish getting dressed or to transfer to my wheelchair.

But if I take a few minutes and wander a bit deeper into my emotional consciousness, I discover another, more solid, underlying emotion, like bedrock beneath gravel, hard, solid, unyielding. This deeper emotion, not really all that deep, is an unremitting sadness. When I strip away the surface of my emotional landscape, this is what lies beneath, that sense of sorrow over what is happening, what has happened, what will happen.

I can only scratch at the surface of this bedrock. It goes deep, this sadness. Perhaps it has always underlain me, only now it has purpose, reason to be there. Even as I poke and push at it, there are only light incursions beyond the surface. Without some sort of chemical release of inhibition, it remains almost always immutable, unyielding, a maudlin force seeking to do nothing but remain.

There is but one way to deal with this substrate of sorrow and sadness. It is to ignore it, to move along finding as much joy and happiness as is possible above this sub-tyranny. That's what happens when I stay at the surface, not going too deep. I can use my emotions to get me moving. Once I am moving, things improve, mostly, except when I have time to think.

Saturday, 15 August 2015

I Need The Rest

I slept through the night without awakening for a fever or sweats or chills. I awoke this morning at 9:00 AM feeling like I could get up and go. In fact I did get up and go, after which I decided to climb right back into bed. While I may be getting better, I am by no means returned to full health, or at least what full health looks like for someone with ALS.

The antibiotics, working with my normal bodily recovery systems, are doing what they need to do. The infection is weakening. As it does, my body has more energy for life; I am strengthening. Today, for example, I did the transfers, both into and out of bed, without the use of the transfer board. It wasn't a perfect transfer, by any stretch of the imagination. It was, however, a poke in the eye of the infection, a rebellious act in the face of illness.

I need a few more days like this before I declare myself healed, a few more days for the antibiotics, the Tylenol, and the white blood cells to beat back this monster which has invaded by sovereign space. My best guess is that I will be completely out of the woods, health wise, sometime around Tuesday or Wednesday. In the meantime, I plan on continuing to get plenty of rest, making the choice to take it easy, stay in bed when I can, sleep as much as I can.

It's funny how often over the years I have heard those words from the Bayer commercial, "Get plenty of rest. Drink plenty of fluids. And take Aspirin." I always thought, "Who has time for that?" When I was young and healthy, I just kept going. When I finally did stop, thanks to illness, I really had no choice in the matter.

This time I am in that space, where I can choose to respond as I once did, with get up and go, using my own energy to power out of this last few days of illness,  Or I can choose to do what the doctors say, that which Bayer skillfully turned into a sales slogan. I plan on getting plenty of rest, and drinking plenty of water, or orange juice. Alas there will be no wine, beer, scotch or whatever. It's okay. My body needs a break.

Friday, 14 August 2015

My Body Is At War With An Invader

When I said I wasn't out of the woods yet yesterday, I didn't know how correct I was. My hope was that I would come home, take it easy, get some rest, take the antibiotics, and all would be well. Alas this is not how it is going. Even before I got home yesterday, my fever had returned; initially low, but rising. By the time I got home, I took a couple of Tylenol to help with the fever. It broke; I began to sweat. After dinner I went right to bed.

In a few hours my fever returned. By midnight it was high enough to make me take more Tylenol. I'm no where near the daily maximum dose on the bottle; I'm just using it as needed to help my body in this battle. Once again, after the Tylenol, my fever broke. Once again, I began to sweat. This time my bedsheets took the brunt of it. Poor Katherine had to put up with me tossing about, or at least trying to move about, to find someplace comfortable. There was none.

I have a war raging inside of me, fought on a microscopic scale. The infection in my body, the unwelcome invader, is attacking me, seeking to destroy whatever it can. My white blood cells, my army of defenders, swarm out to attack, battling back the invader, killing it where and whenever it can. The side product of this intense battle is the fever, as if the warring parties were setting fire to the battlefield, using a scorched earth tactic to fight one another. Tylenol puts that fire out, allowing my defending white blood cells to focus on victory instead of fire fighting.

The antibiotic has it's part too, providing a sort of support battalion for my white blood cells, a kind of mercenary group who have signed on for this battle and this battle alone. If I don't take the pills, my body endures this war all on its own, white cells fighting valiantly on all fronts, consuming energy and strength along the way.

In a healthy body, this war would be over quickly. Many people get these kinds of infections and never even know about them. They come, the white cells do their part, the invader is defeated. In my situation, I am not fully capable. My body has other issues going on, other problems to fight. I'm a great target for infection, a kind of natural population cleansing system. Were it not for modern care and medications, I would not be here any longer. I would have lost a battle somewhere along the line.

No matter. I have my white cell warriors, my Tylenol, my antibiotics. I have the tools. I have the will to fight. It will just take a bit longer to wage this war, to win.

Thursday, 13 August 2015

An Opinion On Health Care

I am going home today, free from my hospital incarceration. I am not out of the woods yet; I'm still fighting the underlying infection. However, as the doctor says, there is little the hospital can do for me in this regard. The sepsis is gone. Now it's up to my body, with the assistance of a round of antibiotics, to fight off the last of this infection. My body generally does well with this, so I am hopeful. On the other hand, if my white blood cell count spikes, something which causes the extreme fever and shaking, then I have to come back to hospital where we will start all over again.

This experience over the last few days have left me with two very strong, and very personal, views on care in Canada. Dealing with Home Care has already had an impact on me, now it's hospitals and care homes. First of all, it's important to note that generalizations cannot be made from one experience. The plural of anecdote is not data. This is my view, my experience.

To begin with, my care here at not-for-profit, publicly funded Foothills Hospital has been excellent. It has been timely, well focused, with a goal to get me well and get me home again, something both the hospital and I would like to have happen. The doctors and nurses have treated me with respect and dignity. Even some of the Personal Care Aides have been exceptional. However I did find that the level of professionalism and care declined as I dealt with people in the lower echelon of the care giving system.

This got me to thinking about how the PCA's  work within the health care system. I realized that the people in the hospitals are likely the best in the field. Even so, many of them are clearly not well tuned to their purpose here. Patient care is important, but they seem to forget what that means at times, especially when it conflicts with their own plans.

My extension of this is to think of for-profit, privately-owned Care Homes. I have heard any number of horror stories, and I have dealt with some of their personnel. These Care Homes have to make money; Foothills Hospital doesn't. Plus even the lowest of staff here at Foothills Hospital are reasonably well paid. Care Homes will hire the lowest cost resources where ever possible in order to make a profit. That means many of the staff in the care homes, or in home care, are not the top graduates from their training program.

This doesn't mean they are all bad. Many of them are caring, diligent people who really want to serve and help. Care is important to them. For many others, however, it's just a job, and a low paying one at that. I believe that is why some Care Homes do so well, while others do so poorly. In a terrible over-simplification, the good Care Homes hire people who care, lead them well, and help them understand that their business is caring for their residents. The bad Care Homes hire with an eye to minimizing wage cost and maximizing profits.

For me, this is the most powerful argument for public health care. No matter what anyone tells you, if you do the research you will discover that the private health care model fails on almost every count; efficiency, effectiveness, cost, any others you care to name. I don't say our public model is perfect, but let's compare it here at home. When I make the comparison, I appreciate the folks here at Foothills Hospital all the more.

Wednesday, 12 August 2015

I'm An ALS Educator

I must be feeling better. I've tried eating hospital food and drinking hospital coffee, only to realize how truly bad it is. I'm not out of the woods yet. I still have a low grade fever with an ongoing headache. While the doctors have ordered to removal of my IV, including antibiotics, I'm still very tired. I'm not sure if it's the infection or just plain old ALS. It's kind of a Hobson's Choice.

It's been interesting dealing with the nursing staff here. Many of them have little or no experience with ALS patients. My nurse last night confessed that she has only ever seen one other person with ALS, and it was right after she was diagnosed, so she could still walk, although unsteadily. I remember those days. sadly, and sadly.

When she started asking all kinds of questions about how ALS affected me, I became an object lesson for her. She observed the paralysis in my legs and asked what happened when I roll over. So I showed her by rolling over. She said "Your legs just flop." And I said "Yep, that's how it works." Then I showed her the muscle wasting in my thighs, where it is most obvious. She saw the size of the remaining muscle and commented that I must have been a strong man before ALS. If she only knew.

Today it's another nurse, or another orderly, or another Patient Care Aide, what they call orderlies here. Someone is going to wonder what ALS is. Someone is going to ask. Even people in the medical industry don't know very much about this illness. Nor did I before getting it, but you would expect people in the business should know.

Tuesday, 11 August 2015

In Hospital

I'm in the hospital. Oddly enough, it's the same hospital I was in three years back when I was diagnosed with ALS, Foothills Hospital in Calgary. This time I am here with some sort of serious internal infection, most likely a Urinary Tract Infection. I came in by ambulance last night and the doctors have decided it is safer for me to be here rather than at home.

It all started yesterday morning. I awoke with a headache, something I attributed to my normal morning issues. After my shower and exercises, Katherine and I headed for Ikea; she wanted to pick up a few bowls and things. Then, about halfway through Ikea, I started to feel nauseous, dizzy, with even more of a headache. We headed back to the truck right away, where I noticed I had a fever.

We headed home, where I transferred to the couch and tried to rest. By about 5:00 PM. I knew that something was seriously wrong. I had a fever of 103.9 F, 39.7 C. I was shaking and becoming increasingly weak. I also noticed I was going pee about every half hour. We called the ambulance and they brought me here.

I had a very bad night last night, my body swinging wildly from overheated to chills. I spent most of the night cold shaking, calling the nursing staff for warm blankets. I've been sleeping almost constantly since I got here, that sleep regularly interrupted by some nurse taking my blood pressure or covering me with a warm blanket.

Today I am doing a bit better. I still have headache. The Tylenol and a broad spectrum antibiotic seem to have the worst of it under control. Weakness remains, as does the IV antibiotic. I suspect they will keep me in here for 4 or 5 days, or until I am past the worst of this infection.

It ain't fun.

Monday, 10 August 2015

Not So Good Care

I have several different Home Care Aides who come in to help me with my personal care and exercises. Their ability ranges from poor to excellent, as you would find in almost any group. I don't get a lot of choice with respect to HCA's; they are assigned to me. If they are incompetent or act inappropriately, I can ask for a different HCA; I don't get to choose. Once again, an HCA is assigned.

My experience is fairly wide with respect to care workers. After more than a year, I have had perhaps a dozen or more of them into my home. In that time, I've had one who was so bad that I called the agency and said I never wanted to see here again. I've had a couple who've been problematic, while most of the rest have ranged from average to, in one or two cases, excellent.

The HCA who comes on Monday is on the low end of average, perhaps bordering on poor. As with many of these women, she is a new immigrant. Her English communications skills are poor at best, with me having to ask her for things several times before she understands. Her memory skills are equally poor; from one week to the next she will forget what to do. I have to guide her through things every Monday.

What her situation really points out is the difference between someone who knows "what" to do with my care and exercises, and someone who understands "why" it is being done. This is not a language thing; my other care givers are virtually all ESL workers. Quite frankly, I think my Monday HCA is operating a somewhat less than an optimal intelligence level. I will ask her something and you can see the gears turning before she gets it. Sometimes I must ask three or four times for something she does every week. Sure, part of it is language. The other part is slow processing.

Today, I found myself in the shower, done, dripping, ready for help to get out. She was on her phone, taking the time to finish her conversation before helping me. She can only do one thing at a time; this time it was finish her call before attending to the client who was sitting in the shower, soaking and cold. There are constant moments like that, where you can see her deciding what to do, not knowing where to go next.

This is the kind of HCA I don't want when I get worse. I need care-givers who understand why I need care, who understand the purpose of the various activities, who can see a need and respond to it. I need someone who gets it, and does it without my having to ask. After all, one day I won't be able to ask.

Sunday, 9 August 2015

Quiet Has Descended

It was quiet when I awoke this morning, far too quiet, a Sunday morning with almost no traffic, no sounds on the street, and worst of all, no sounds in my apartment. Mom and Ray have been visiting since last Tuesday. For the last five mornings I've awoken to the sounds of them puttering about in my apartment, the TV on for entertainment, background noise to their morning routine.

Having Mom and Ray with me in my apartment is the kind of affirming presence which draws an increasing contentment the longer they are here. Their visit was too short; I wanted them to stay longer. Unfortunately they have commitments back in Vancouver requiring them to return before August 11th. Although today is only the 9th, they felt better for being back sooner. I understand that; you never know what will happen on a drive from Calgary to Vancouver.

Fortunately my brother Adam is doing the driving. He was visiting as well, having driven Mom and Ray from Vancouver all day Monday, then doing the return trip today. In addition he served as chauffeur for their visit here. I have only one spare room, so Adam decided to stay in a local hotel rather than camp out in my living room, using my camping cot as a bed. It's funny; I love that cot and really enjoy sleeping in it. My brother Jim detests it and shared his opinion with Adam. I suspect it's not only the cot; a hotel provides him with all kinds of privacy, something most of us need.

We said our goodbyes last night. I asked Mom to check in with me before they left; their planned departure time was 8:00 AM. She tells me she came into my room, kissed me, poked me in the arm, said "good-bye" all while I slept soundly, right through it. I suspect that it will become axiomatic in my life, that I will sleep through a great many things. It's just the way things are these days.

I'm sorry I missed that good-bye. I wanted my last words to my Mom to be "I love you". She is a wonderful, generous, supportive, kind presence in my life. Ray is a constant stabilizer, both for me and for Mom. Between the two of them, it's about as good as it gets. Having Adam here was an added bonus. Jim came down too. And Katie came by. It was a real family week. Now it is over and once again quiet has descended.

Saturday, 8 August 2015

A Real Show

Has my moment passed? I wonder if I am still relevant with this blog. Certainly with respect to reporting progress, or rather regress, with respect to ALS, this blog is useful. I've begun to wonder lately, however, if I am out of things to say, finished with what I want. I have noticed, even within myself, a certain unwillingness to tackle some subjects, a self-filtering thanks to an awareness of who reads.

There are things I want so say, some of them truly personal, some of them perhaps hurtful to others. I don't say them; I feel them and keep them to myself. I suppose it's just good policy, good etiquette, kindness to those around me. Yet I have anger and pain within me which, unfortunately, I carry alone, or at least almost alone. I have some true confidantes, people to whom I can express the deepest of my feelings without worry or fear. I just cannot write them down for public consumption.

It has been suggested to me be one of those confidantes that I start a private journal, a diary, wherein I could write my darker thoughts. It is easy to share the good stuff; it's the bad stuff, the really bad stuff, which I avoid sharing. These thoughts, these pieces of pain and anger, would go in my private journal, written just for me to release, in a kind of catharsis. I am certain that more than one of these very private entries would simply be pages and pages of swear words; expletives galore.

The problem is that someone would read these thoughts eventually. The simple truth is that if you don't want it public, don't write it down. If you want it truly secret, keep it to yourself, never sharing or expressing those thoughts and feelings. You can have them, you can feel them. Just keep it to yourself.

Unfortunately, even with my truly public thoughts, there is a lot more going on that I don't talk about. As my disease progresses, these thoughts come more often. Yet instead of sharing them, I talk about transfer boards, slings, wheelchairs, bodily functions, all of the surface stuff which is mostly inoffensive. Sometimes I slip, crossing that boundary. Sometimes I say stuff I shouldn't. Now image if I wrote down everything I feel. That would be a real show.

Friday, 7 August 2015

It's Always Out There

I'm stiff, sore, and weak today. It's one of those days where sitting up is a real challenge, where getting dressed is more exhausting than usual, where my range of motion exercise, those which are performed on me by a care worker, leave me ready to sleep, ready to fall backwards, laying there, wishing I could just stop the whole world.

Yet with all of this, I am up. With all of this I am active, writing, eating, enjoying a coffee. I simply cannot allow this disease to set my agenda. I am going to be tired, always. It doesn't mean I am going to sleep, always. Nor does it mean I have to give up. There are two simple little secrets to living with this disease. The first is always get out of bed. Once you are up, moving about and busy, everything gets more interesting, more involving. Moving makes you feel like moving. The second is to forever try to find the humour in life. The old adage is that humour is tragedy plus time. Quite frankly, it is never too soon to find the humour in almost any situation, even the most devastating. And trust me, this disease ranks pretty high on the devastation scale of humanity.

I am reminded on a daily basis of all the wonderful things which can still happen to me in spite of having ALS, or in some cases, even because of having ALS. I find love in my life, both because of and in spite of ALS. I find adventure in my life, both because of and in spite of ALS. I find laughter, enjoyment, pleasure, all kinds of things, in spite of ALS. It would be easy to dwell, as I am oft wont to do, on how hard this illness is. It only takes a moment to throw me into a spin. So finding and reminding myself of these good things is the single most important thing I can do.

I can still eat; one day I won't be able to. Where is the humour in that? It's easy. There will come a time when nobody can order me to eat leafy greens. It'll all be a blended mush, hopefully with lots of honey or sugar in it. I can still type; one day I won't be able to. Where is the good in that? I will get to learn to use an eye gaze computer, a really cool piece of technology. One day I will not be able to care for myself. How can I enjoy that? Well the truth is that I love having someone living with me. I love the company. When that day comes, I will have plenty of it.

Oh, and by the way, the BC Lions beat the Edmonton Eskimos in CFL action yesterday. That's always a good thing. You see, there is always something out there.

Thursday, 6 August 2015

Transfer Board Adventures

I used my transfer board to get out of, and back into, bed this morning. The two-part transfer is necessary as I get up to go to the washroom, then get back onto my bed to get dressed. Actually it's a three part transfer, as after I am dressed I once again transfer back to my wheelchair. It all went pretty well, actually, although it was not without its difficulties. Then again, everything I do these days seems to have its difficulties.

The transfer board is one of those terrifically simple, low tech devices which makes my life incredibly easier. It is just what it sounds like, a board which I can use to aid in transfers. It is a thin piece of heavily laminated plywood, designed to take the weight of someone like me as I move from one surface to the other, typically from my wheelchair to either my bed or my couch. It has sloped ends to allow for easy mounting; I slide off and one.

This morning, when I wanted to get out of bed, I first had to roll about half way over so I could bet the board under my rear end. Then I positioned the opposite end safely on the seat of my wheelchair. After very carefully positioning my feet so as to avoid entanglement during the exercise, I simply slid across the board and into my wheelchair. It is not all that difficult; I can do it alone, without help.

The trip up out of the wheelchair is somewhat more challenging. First of all, I can't roll my rear sideways while in the chair, it's just not physically possible. So instead I have to kind of shove the working end of transfer board underneath my butt, trying all the while to get a bit of lift to make the shoving easier. After a bit of effort, the wheelchair end of the transfer board was in place. Then I put the bed end in as safe a position as I could, and pulled myself up the board.

That's when I discovered that the transfer board slides for itself just as well as it slides me upon it. About half way across I noticed that the board was starting to come with me. I was committed to the process, so I just kept going. Fortunately that's when I also discovered that while I was on the board in this position, with just the slightest shifting of my center of balance, the board would still stay in place for the last of the slide.

Getting into bed is not as easy as getting out of bed, at least with the transfer board. It doesn't really matter though. Once again I have found a new way to do old things, a way that helps me keep my independence. That's all that really matters.

Wednesday, 5 August 2015


I've got to stop punching myself in my private parts. While that may seem a silly statement, it actually underlies a very real challenge which is occurring more frequently these days. It has to do with my failing hand strength and the way I put on compression socks.

Compression socks are a normal part of my life these days. They are highly elastic, tight, stretchy nylon socks designed to compress the muscles in my legs, forcing the blood up and out of my lower legs. This important process reduces the edema in my feet and ankles by helping to move the blood upwards out of my feet.

The problem arises when I put on my compression socks. The process is difficult, requiring that I put the very tight, stretchy socks over my toes and working the socks around my heel. The first step is the toes, where the socks tend to snag on my toenails, meaning I have to pull hard and lift the socks across the snag zone. Then I have to lift, once again pulling hard, and stretch the socks around my heel, pulling small bits of sock at a time, inching the whole sock until it eventually is past the heel, ready for the easy part, pulling it up my leg.

This whole process of grabbing bits of sock, stretching and pulling it over toes and around heels is done with my ever weakening fingers. I do my best, but my hand slips on a regular basis, the back pressure of the pull causing my clutched hand to fly backwards towards me. This is where it gets exciting.

When I put my compression socks on, I have to lift my foot and position it to where I can reach it. That typically means my foot is resting on my knee, partly on my upper leg. This positioning means the toe and heel of my foot are in a direct pull line with that most sensitive part of my anatomy. When my hand loses grip, it flies in it's predestined direction, smacking me with that full backwards force, right in the you know what.

You might tell me to find a different way to put on my socks. I would agree. I've tried. It's just not workable. This is a recent phenomenon, this self-punishment. I don't like it. I'll keep trying to find better ways to live my life; this is one I am going to focus on.

Tuesday, 4 August 2015

Sling Time

I missed again while getting into bed last night. I started the transfer, made it halfway across to the bed, then did not get stable on the wheelchair wheel. My rear end slid sideways. I found myself with my upper body on my bed, my legs dangling, my butt sort of half and half. It's kind of a scary thing, although the worst that could happen would be I would fall all the way to the floor and then call someone for help.

It's an odd kind of position to be in, this halfway into bed. The first thing I tried to do was steady myself, using my wheelchair, wheels locked, as a stabilizing point. Then I worked slowly, once again using the wheelchair as a brace point, sliding and wiggling my rear end up onto the bed. It took about 20 minutes to get enough of me onto the bed that I could use my M-rail to pull myself into a sitting position.

All of this takes a lot more effort than you might expect. It's generates a bit of panic too. There is nothing to grip in this sort of position, other than the bed sheets. I'm midway between the headboard and the footboard, unable to reach my M-rail at the head, or the post at the foot. So the wiggling part requires small movements, small enough that I don't slide frontwards by accident. And all the while, my jeans are snagging and dragging against the sheet, pulling it out of alignment as I move. So I move carefully.

Of course I was exhausted by this time, so I just rested for a while, catching my breath, letting my heart rate come back to something resembling normal. Then, once steadied and safe, I disrobed for bed. What is usually a process of only a few minutes became a half hour struggle. I was exhausted. Fortunately I was in bed. I'm really going to have to start using that damned sling on a regular basis.

Monday, 3 August 2015

A Quiet Desperation

There's a quiet desperation that goes with this disease, a kind of constant background noise that affects everything you do, or try to do. It's not the big things that get to you, although they certainly have a big enough impact. It's the little things, the near constant stream of small reminders that you are changing, that you are no longer what you once were.

This morning I went to transfer from my bed into my wheelchair, a simple downhill shift which I have done hundreds of times before. I didn't quite make it, instead coming to rest on the wheel of my wheelchair then sliding unceremoniously into the chair. It's not a big moment. These things happen. It's just another one of the million little things that cut, constantly.

I shake. This is no big deal. Lots of people shake. It's not the shaking that gets to  me. It's the wondering. What will I spill next? I go to take a drink and my shaking is just enough to spill, just a little. I wonder if the soup will get from the bowl to my lips without half of it landing on my shirt. I have trouble typing sometimes, just often enough to make it annoying.

There are the many rest breaks that I need while getting dressed, moments of pause I never needed in the past. They are small moments which, when added together, lead to my ongoing conclusion that "nothing is easy, nothing is fast". Even the transfers to and from my bed, or to and from my couch, or into and out of my truck, require a rest break immediately after. It's not a long break, just a moment. It's a quiet kind of thing.

None of these things will go away. None of them will get better. All of them will get worse. The shaking is a result of weak muscles, so it will stop when I can no longer move the relevant muscles. The weakness is a result of working weak muscles. It will never stop, as long as I can move a muscle. The tiredness and exhaustion are just as much a part of my daily existence as is eating, drinking, or sleeping. That's what leads to this desperation, this damning acceptance; it's happening, it is going to happen, it will happen. There no way around it. The only way out is...

Sunday, 2 August 2015

Hotel Guest Experience Consultant

I think I have my next career move figured out. I am going to try to position myself as a "Guest Experience Consultant" for hotels and motels. In this role I would not only deal with the issues of making hotels more wheelchair accessible; I would also deal with the kinds of things which get in the way of a truly great experience for all hotel guests.

Here is how it would work. A hotel, or hotel chain, would ask me to visit their various locations. The would provide a room for two nights, a handicapped room of course. They would also provide for meals and a modest stipend or honorarium, along with covering my travel costs, mostly represented by fuel and truck maintenance. I would come to the hotel, without fanfare but certainly not in secret, and stay in the designated room for two nights.

As a result of the stay, I would produce a "Guest Experience Assessment". This assessment would cover the pre-check-in experience with things like online booking, price comparison, hotel entry, parking, etc; the check-in process including handicap access to the front desk and lobby areas; a room assessment for both handicapped and standard rooms; in hotel services and support such as restaurant and lounge areas, housekeeping, maintenance, etc; and the check-out experience including assistance as needed, flexibility of check out times, and so on.

I would, of course, plan any visits to allow for a collection of sites along a given route, thus facilitating my love of a good road trip. It would be perfect for me, and potentially quite helpful to any hotels using my service. Since I don't want to do this as a permanent job, and most hotel chains aren't looking for someone to do this on an ongoing basis, it would be a terrific fit with a consultative model.

Of course there are two drawbacks to this whole idea, aside from the amount of work involved in selling this service to a market already working on paper thin margins. First of all, it assumes hotels, particularly hotel chains, actually see any value in this kind of service. Let's face it, the already get a lot of feedback for free.

Secondly, the competition would be pretty fierce. Lots of people have opinions and experiences as hotel guests, although not with the hundreds of hotel nights and dozens of locations I have under my belt. I also doubt the ability of many of these potential competitors to take a systematic and organized approach to this kind of assessment, nor are many of them literate enough to produce a decent documentation set. Finally, I doubt there are many Guest Experience Consultants who know the ADA guidelines for access as well as I do. But still, there would be plenty of people in most major towns who would be willing to try.

It's a fun idea, fun to think about. I just doubt it is realistic. After all, why bother? There are lots of customers out there and the hotel business seems to be doing just fine without me.

Saturday, 1 August 2015

I Try To Be Fair

I continue to be appalled at hotels who don't understand the concept of "wheelchair access". I am staying as a guest of a small hotel chain based here in Edmonton. Management offered me a stay at anyone of their properties as a compensation for messing up on another reservation. I happily said yes to the proposal, and used it for a free weekend here in Edmonton where I get to visit my brothers, Peter and Jim.

The hotel property here is almost brand new, having been built within the last few years. It's the newest in their chain of properties. It's not like this is some old building with ancient limitations. It has a lovely foyer, great looking restaurant, nice little bar. It's elevator space is excellent, with a wheelchair room nearby. The door has a wheelchair viewing hole, so I can see who is at the door.

Entering the room, all looks well. The entry area is large enough for a wheelchair to come in and turn around. The bathroom is equally large, with a wide door for easy access. The flooring is carpet, one of my pet peeves, yet the grain and loft is such that movement is not tremendously difficult, although one could not say it is easy for me.

Then I went into the bathroom. First of all, some idiot decides to put in a "wheelchair" shower with a four inch lip on the front. Then, to add insult to injury, they put a glass half-door blocking access to the wheelchair seat. The open space remaining is too narrow for wheelchair access. Then there is the grab bar on the toilet. Someone put it in with an upward slant of 45 degrees away from the front. This means that I cannot hold onto it while sitting on the toilet, as the angle makes it almost impossible to grip; it needs to be level to work properly. Finally, I come into the sleeping area to discover once again that someone has decided wheelchair access means a bed high enough to need a stepladder.

All of this is from a chain and property which seemed to want to make a special effort to impress me, to make up for a mistake. All they did was make it worse, proving to me that wheelchair access is something they simply don't understand, or possibly even worse, don't care about.

You will note that I am not naming the hotel or chain. This is on purpose. I want to give them an opportunity to learn, to make things right, to show that they truly care about their guests who are handicapped, in wheelchairs. I want to give them a chance. I just seems like the fair thing to do.