Wednesday, 31 January 2018


Today, here in Canada, is a day dedicated to increasing awareness around mental health issues. It's ironic, as my mental health has taken a beating in the last few days. I think the realization that ALS is now clearly attacking my hands and fingers has something to do with my mild depression and general feeling of sadness, and, dare I say it, self-pity. It may not be socially acceptable to say it, but these last few days I have been feeling downright sorry for myself.

I don't think this feeling of self-pity is entirely condemnable. Let's face it; I'm in a fairly pitiable spot. Advanced ALS is no dance at the Roxy, no walk in the park. This is a tough spot to be in, especially for someone as dependent on hands and fingers as I am. What's going to happen when I can no longer type, no longer dial the phone, no longer pick up a glass? So, yes, I'm feeling a bit sorry for myself. Wouldn't you?

There are those who will remind me to find joy in what I have, or rather, what I have left. For those who have not suffered this suffering, that is, at best, a specious comment. I have, for seven years now, been working hard to find joy in my ever diminishing life. The first two years I didn't know what was wrong, so it was possible to pretend I could be fixed. After diagnosis, with reality firmly stomping on my hopes and dreams, I learned to live with what I could, when I could. I have to say, though, that this requires effort, work. Self-pity requires no effort at all; it's just there to take over me.

Stop and think for a minute. I, acutely aware of the process, am losing my body, slowly inexorably. My intellect is intact, such as it is. My mind is relatively intact, although my emotional core is taking a real beating. Psuedo Bulbar Affect is having an impact on some cognitive functions, but it is not harming my intellect. Some days I wish it would, taking me to a place where I was not only unaware of the changes, but unconcerned about them too.

I am fairly and firmly tired of this disease. I'm not dead yet, but the life is slowly being sucked out of me, ounce by ounce, milligram by milligram. It's wearing, grinding. If you want to give me grief for a bit of self-pity now and then, consider trading places with me. Then again, maybe not. I wouldn't wish this on anybody.

Tuesday, 30 January 2018

The Pill Bottle

I hate writing about what is happening to my body, especially when so many other things in my life are going so well. Thanks to support from all of you, I have been able to start not one, but two batches of wine. I've been able to meet my extra mortgage payment this month as well. I've managed to get out this last weekend and David is planning other outings for me. He is even looking at insuring my truck rather than have me sell it, so he can take me on a few more road trips!

Yet, all the while surrounded by these good things, I am constantly faced with the challenge of ALS, the continuing loss of ability. Lately I have been noticing the increasing weakness in my fingers. It's not a lot, just enough to let me know what will happen in a few months or so. I'm having just the slightest bit of trouble opening my pill jars. Not enough trouble that I need help, not even enough that I would consider changing to easy-open blister packaging. No, it's just enough to make me know it's happening.

That's how it works with ALS. You can see the train coming. You can see it a long way off, watching it get closer and closer. Then, as it nears you, you realize fully how completely helpless you are, trapped in its path, unable to move out of the way. You know it's going to hit you. You know you are going to lose every bit of muscle and strength you have. And as you wait, you can feel its vibrations, feel the reduced strength, see the atrophy, sense the total loss to come.

This is the terror of ALS; the waiting and knowing. The hopelessness lies in knowing that there is nothing you can do, no treatment, no cure, nothing but wait for the end of it all. Along the way you can experience moments of joy, times of happiness, but in the end, as you try to open a pill bottle, or pick up a towel, or turn over in bed, you realize what is happening to you, how it will all end.

I am not afraid of ALS. I am ready to face whatever it will do to me, but only for so long. At some point it will be enough. My hope is that day is not too soon. After all, I just started a couple of batches of wine; I need to be around for at least a few months. But that damned pill bottle has me worried.

Sunday, 28 January 2018

Good Things In Every Day

It's been a busy day or two, which for me can be both a good thing, and a bad thing. I prefer to look at the good, especially when there is lots to be had in it. I think that's one of the secrets, or not so secrets, about dealing with ALS, or for that matter any serious medical condition. Finding the light, hidden in the darkness; that's the best way to approach all of this.

I've been dealing with a new HCA, both yesterday morning and this morning. Yesterday, for her first visit, she came with an LPN. In light of the challenges of my care, I have told the agency that no untrained person will be permitted into my home without either an LPN or an RN Supervisor. It's simply safer for me, both physically and emotionally. On the other hand the LPN yesterday knew very little about attaching a condom catheter, so I did most of the instructing, actually attaching the catheter myself, a real exercise when you can't see down there.

On the other hand the new HCA seems to be pretty good. She seems unfazed by the intimacy of my care, unworried about handling my penis properly, and confident in everything else that's required to get me going in the mornings. She's 28, so not so young as to be inexperienced. She's done the HCA role for a while, and is working towards her LPN, graduating in a year, so she could be a part of the care team for a while yet.

Last night was good too; David took me out to a place here in Calgary called "The Rec Room". It's a gigantic arcade parlour for all ages, with a bar and restaurant. The food was reasonably priced, as was the beer. We hung out there for a couple of hours, checking the place out for future MeetUp events. It was great for me to get out.

Today has been a bit quieter; nothing bad about that. I've had a visitor. I'm making spaghetti sauce for Tortellini; I feel up to cooking and that's always a good thing. Then I have two wine kits to get started. The gear is all set up, thanks to my guest. There will be nothing too heavy for me to do, so I can start these kits on my own, once again making me feel like I am still at least somewhat capable of caring for myself.

It's important for me to find success where I can. My life is becoming more limited, day after day. Taking a lesson from something my brother Adam said to me when all this started, I try to find the good thing in each day. It keeps me going. Then again there are days like today, with lots of good things going on. I'll be tired, and even that is a good thing. I'll sleep well tonight.

Saturday, 27 January 2018

Friday, 26 January 2018

The Morning Dirge

The expected event occurred. It did not occur when expected. It did not occur as expected. Yet occur it did, the first grace notes of the slow dirge which was to follow rising within me, expelling without me, at around 5:00 AM. This was to be no single explosive crescendo, but a series of subtle escapes, each carrying with the the indications that there would be more to follow.

This discomforture was to continue its slow march to its inevitable end, a steady drum beat of ponderous perterbation, interrupted by brief snatches of rest where my rumblings abdominal released the bass drum and settled for a simple snap on the snare. Then, finally, at about 6:30 AM, my innards determined themselves to deliver unto me the final stage of my folly. I shit myself, fully and completely. The prunes and laxative had worked.

There I lay, wondering what to do next. I pondered. In fact I even fell back to sleep for a bit. I awoke, pondering once again. I could call Alberta Health Services Home Care Emergency Support Team. But the timing was key. It would likely take them at least an hour or two to respond, or, if busy, they might ask me to call the Home Care agency, CBI. If I just called CBI directly, they might respond by saying that they were going to take an hour or so, but they would just go into my regular morning routine, meaning I would be up and in my wheelchair at 9:00 AM, a truly horrendous outcome for me. I could just lay there and wait until 10:30 AM, settling into some sort of semi-sleep state until my regular HCA arrived.

I opted for calling CBI. It was 7:18 AM, an unGodly hour in my book. The CBI Coordinator was good about things, assuring me that they would send a special Care Aide to help me with my immediate need, but also send a Care Aide for my regular morning visit. I could sleep some more after the mess was cleaned up. She warned me it might take a half hour or more to get a Care Aide to me, but also assured me she would call back once she had someone on the way. So I settled in for a bit of a wait.

Then, not 15 minutes after completion of the call, my phone rang. I thought it was the Coordinator calling with an update, something of a surprise since they rarely call back when they say they will. To my surprise, it was the Front Door, the HCA awaiting, ready to come to my aid! It was Edith, cheery and chipper, having started her day at 5:00 AM. She tore into the challenge before her, cleaning up everything which needed cleaning, then hung me in my sling to encourage further activity from the operatic horror at my rear end. It worked. There was more. She cleaned me up again, going so far as to do a bit of digital extraction to get a small bit that was blocking the exit path. She had arrived at 7:37 AM. She was gone by 8:10 AM. I was clean, warm, and dry, ready to sleep again.

I did sleep, until she arrived as planned, even a bit late, to take me through my morning routine. I showered. I tried to use the toilet to no avail; troublesome elements within me refused to coopertate, so we forced the issue with the sling. She catheterized and dressed me. She put me in my wheelchair and made the bed for me. She even put my shoes on! Then, once again she was gone, returning to the fray, the neverending battle with dirty diapers, condom catheters, socks and shoes, medications and food. No, we are not children, but our needs are much the same. The only I have that holds it all together is humour. On the other hand even a child will tell you that shitting yourself at 5:00 AM is not fun, unless you make it fun somehow.

Thursday, 25 January 2018

Constipation And Solutions

I hate being constipated. It's a feeling I suspect a great many of you share with me. It is, however, a feeling which is relatively new to me. Up until last January, I had never experienced any sort of constipation, let alone a serious bout of it. That episode last January was hospital worthy, a process I don't want to repeat.

Unfortunately what has been happening is that as my core muscles have failed me, these bouts of constipation have become worse and worse, such that I am contending with this condition on a regular basis, my own regularity being replaced by this newfound irregularity. What used to be a predictable morning event has become a morning hope with no predictive capacity.

I sit. I wait. I hope. I push with whatever musculature I have left. We've taken to bypassing the commode chair and just using the sling on the second or third mornings of continuing discomfort. Even with the squishing effect of the sling, it just doesn't work some days. Like today. So I sit some more, wait some more, hope some more. Then I finally just give up, accepting that I will have to live with stomach discomfort and rectal pressure throughout my day.

The final insult is that I am sitting all day, that pressure just building with no release. I can't just get up and try again. I am no longer able to undress and re-dress myself. while I might be able to sling myself onto my commode chair, I am unable to get my pants off. So, if I want a do-over, if I want to try again in a few hours, I am out of luck. I can call for home care; they are reluctant to come out "on spec". Their response is to call them after the fact and they will come, usually an hour or two later, while I sit in my own shit.

So today my diet is mostly fruit. David is coming over for dinner so steak is a must. It's Robbie Burns Day, so ample Scotch is definitely on the menu. I feel sorry for whomever is my evening HCA tonight. One never knows the outcome if a day of fruit and an evening of Scotch. If nothing, it will be even worse for my morning HCA tomorrow, for my nightcap will be prunes and a laxative. It could be an explosive morning.

Wednesday, 24 January 2018

A Health Care Advocate

There are days, like today, where I get really tired of the exercise of being an advocate for my own care. I don't have anyone, beyond myself, who is in a position to navigate the web of processes and people involved in the various elements of my care. I'm not sure which is worse to manage, the process or the people, but doing them both tires me out, wears me out, at a time when I have so little energy for it.

My comments below should not, must not, be taken as complaint. They are just examples of the various kinds of things I have to manage these days. They all take energy out of me, be they good or bad. Even the best of things can make me tired, things which benefit me. It's just the way it is. They may not seem like a lot to some of you, but they are a lot to me.

Today I am navigating issues with the Home Care agency as they try to resolve their issue of not having appropriately trained people on the weekends, especially when one of my regular care givers is away for any reason. I think, in the final analysis, the agency is going to tell me they will have to send a Licensed Practical Nurse, since the LPN's are supposed to be trained in all care needs, especially my more complicated and personal care needs. However they are also going to tell me that if they have to go that route, I will have to accept lengthy delays in care on those days when my regular care givers are not available. In short, if they don't have the coverage, I'll have to wait in bed until they get to me.

Another issue I am dealing with today is my move towards Self-Managed Care. Alberta Health Services has "changed their process" for applying for self-managed care. In addition to re-applying I will have to retake their "special seminar" on Self-Managed Care. They are booking seats into March right now, so no matter what I do it will be at least three months before I can even begin to look at a live in care aide or other modes of care delivery. This, of course, assumes that my already over-burdened AHS Nurse Case Manager is able to get them the message that I need to get to Self-Managed Care as quickly as possible.

And then...

Today the wheelchair technician from the Alberta ALS Society came by to make adjustments to my power wheelchair. I have my "old" chair back and I am thrilled. The adjustments were needed and, as usual, the ALS Society was right on top of it. Alan, the technician, came in and spent a couple of hours adjusting the seat back, seat depth, foot angle and any number of other smaller things. All that time I was basically trapped in the chair, as he adjusted it to my own needs. I am very happy to have a chair that fits me and happily sat while he did the work.

But I am exhausted now. I need a nap, a long rest. Being my own health care advocate is exhausting.

Tuesday, 23 January 2018

No Blog, Sort Of

Today is not a good day for a blog post. I really have nothing to say.

Monday, 22 January 2018

Giving Time And Ability

It's 1:00 PM. I'm up. I'm dressed. I've already gotten several small chores done thanks to the help of Kathy, my Monday and Tuesday morning HCA. It would normally be a Range of Motion exercise morning but I asked Kathy if she would be willing to help me with a few things around the apartment which were bugging my, and which also were getting in the way of me doing more for myself.

There are so many areas where this is true, where I can do a part of something, but only if someone else helps me with another part. I can still make a lovely meal, but it works so much better when someone helps me, especially with the side dishes. Want a great lamb roast? Help me with the potatoes. Want Salmon in Hollandiase? Give me a hand with the sauce and asparagus. There are all kinds of cooking example, but there are life examples too. I can tidy the living room, except I can't move the couch anymore, not even with my wheelchair. I can do laundry, but it sure goes easier when there is someone to help with the back and forth. I can even fold laundry, except for the large sheets and towels.

There are a lot of exceptions to the things I can do, more and more coming each day. I've recently discovered I am not strong enough to use the corker to cork my wine. I can still do labels, and even some of the other manual tasks. I can prepare bottles, even so far as to spritzing them with disinfectant. Filling them? I don't think so, not anymore. Maybe though, if I got out of my wheelchair and onto the floor.

These exceptions follow me into shopping, where I can get "almost" everything off the shelves. I need help with things too high up, or behind heavy freezer doors. In most stores there are aisles too thin for a wheelchair. I have to ask for help if there is something there I need.

These obstacles and exceptions are a simply reality of my life. There is little to be done about them. It's just the way it is. I have to live with them, should I choose to live at all. They upset me. It makes a great deal of difference when someone, without question or judgement, helps me so that I can get on with my life, such as it is. That's the biggest thing you can do for someone with ALS or something similar. Give them a bit of your time, where you help with whatever it is they need, without judgement or interference. What you are doing is giving me back something I've lost, my ability to complete a task.

Sunday, 21 January 2018

Sometimes The Anger Gets Out

I've been struggling with my emotions the last few day, fighting off the sadness and sorrow, only to have to deal with the deep underlying anger and bitterness that lives within my inner darkness. Of course these emotions can only live if I feed them, and can only rise to the surface if I allow it. Yet they are there, unfed as much as I can, a seething pot, boiling in my emotional depths.

Personally I think I have done a pretty good job at living with ALS. I've managed to accept the constant changes, although not with some complaining now and again. I think I have reason to complain, but it doesn't really help that much. Notwithstanding all that, I am mostly a happy and cheerful person, ready for a challenge, excited to be with others. While that cheeriness is a front sometimes, I really am a mostly happy, upbeat person.

Unfortunately there are times when the anger comes out, sneaking out like the steam burst from an over-boiling pot. I would like to say I can control it, but I cannot. I am just not strong enough sometimes to keep the anger at bay. In these moments I can say things, do things, which I will ultimately regret. I do not excuse myself; ALS doesn't give me the right to be an asshole. All I can do is apologize when it happens.

Right now I can feel the emotional cloud lifting. My friend Andrea came over for a visit. We talked, each of us, about how things are going in our lives. I got to explain, or more correctly, to express how these negative emotions get to me sometimes, rising to the surface, taking all my emotional goodwill and replacing it with ill will. These moments pass. I can put the anger and bitterness back on the shelf, leaving it there for as long as I can.

The sadness and sorrow never really go away, no matter how happy I might seem. These are the real emotions I battle moment by moment. This duo of darkness can be held at bay, and often are so, by the love, care, and emotional support of others. To be touched by a human hand, to be held in a human heart, this clears the darkness, letting the joy of living return, letting me be happy again.

Saturday, 20 January 2018

So Canadian

Why am I crying? Or rather, why was I crying? The tears are gone. All that remains is the small residue at the corners of my eyes awaiting a tissue to wipe it away.

I cried because of something I read, a story about the passing of another pALS. Of course I could read these daily if I wanted. Just in Canada alone there are roughly 3,000 pALS and a third of them die each year. There are constant reminders in the ALS groups on Facebook that this is indeed a terminal disease. It was in on of these I found the story that made me cry.

It was the usual story. A man in his early 60's who struggled with the disease for a few years, then passed from a respiratory infection. It sounded all too familiar, with the bits about loving family, children and grandchildren who will miss him. Then it got to the part where his wife, the author of the post, talked about how she would miss him, and how difficult it had been to care for him in the last few years.

She talked about how she had turned from wife to nurse, and how distressed she was that in his last days she had to take him to hospital, even though he did not want to go. At the end, he was as emphatic as he could be, what with his inability to speak clearly or loudly, that he did not want to be intubated or given oxygen. It was her last gift to him, to let him die. Then she spoke of relief.

Then I cried. I did not cry for her or him. I am far too selfish for that. I cried for myself, imagining what might happen to me in those days, wondering who would care for me when that time came. I thought a lot about being alone in those moments, having to make my voice heard to someone who really didn't care about me, a nurse in a hurry, pressured to get to other patients. This is why I want to die at home, alone as I will likely be, as I want to be.

I don't know who will be there when it all comes crashing down. I doubt that there will be anyone writing heartfelt posts in the ALS group; none of my family or friends has joined those groups so they won't be able to post. I sometimes wonder if there will be any heartfelt feelings at all when I pass. Have I worn them all out in the voyage? Will they be so relieved that it is over they have nothing left to say?

This is a difficult disease in so many ways. One of the worst is knowing what is coming, at the same time as not knowing what is coming. I know I am terminal. I know I will die. I can even describe, with some degree of accuracy, what I will go through before I get there. What I don't know is the damage I am doing along the way. I can guess, but most of us keep those kinds of things in our hearts, not on our sleeves.

I know I have hurt people. I'm sorry, more than you can know. I know I have become dependent on people. I wish it were not so, but there is so little I can do other than get through this. I know that there are people who care about me, so many. Yet even so, I know that caring is difficult with someone taking the slow train to its last station, someone as demanding and difficult as I am. I wish it were faster, more deterministic. At least that way people around me could have some true sense of an end coming, a chance for rest and relief. At least that's how I feel.

I want people to say nice things about me after I am dead. Even more, I want people to feel those things while I am still here, to feel the burden lifted. Once I die, it won't matter to me. But it will always matter to those who love me. I am sorry I must die. I am even more sorry that the end of my life is such a drawn out process, such a difficult time. I'm just sorry. So Canadian of me.

Friday, 19 January 2018

To Make Wine, Or Not To Make Wine

"To be, or not to be; that is the question." William Shakespeare, Hamlet, Act III, Scene 1

I doubt that I shall ever write such prose, so powerful and poignant in so few words, to contemplate the existential, to wonder at suicide as I do daily now, in so few words. That is the art of versification writ with a fine point. It poses such a fundamental question, especially for those in a situation like mine, one becoming ever more significant as my arms weaken and my breathing retreats.

Yet not all my life is based on the existential. Whether I live or die is perhaps the least of question I ask myself on a daily basis. There are other, much more base questions which I am compelled to face. To make wine, or not to make wine? That is the question for me right now. Yet that question in and of itself compels the very same existential thinking as that which faced Prince Hamlet.

Will I live long enough to enjoy the wine I make today? This process is actually a commitment to living or dying. It takes about 3 months to make a wine kit, including bottling and the most basic of waiting times. If I start a kit, I am committing myself to existence for at least long enough to enjoy a sip or two. If I decide not to make wine, have I already asked and answered the question about my duration? Is making wine a reason to live longer? Maybe, in part.

Can I still enjoy the process sufficiently to continue with it? While I most certainly enjoy the socialization associated with making wine, it becomes increasingly difficult for me to actually take part in the process. These days I mostly watch from the sidelines, issuing the odd "bon mot" as others undertake the making of the wine. What do I enjoy more, the social aspect or the physical aspect? Clearly the social wins, yet I am rapidly receding from even that part of my life. It takes a lot out of me. By saying no, am I givng up? So yes or no also posits the existential.

Of course there is always the non-existential question. Should I really be spending money on wine when I can't make it from month to month without support from family and friends? Let's face it; I live only thanks to the charity of family and friends. In fact the financial is an existential question, since struggling with a lack of financial capability adds immensely to my emotional struggle, leading further to ask questions about the value of living. Thus, once again, I am compelled to ask the existential. To spend on wine, or to not spend on wine?

Here is the bald, simple reality. Even with the help of family and friends I am about $300 short this month. I can push this shortage on into February and March, ultimately breaking even in April, assuming no extraordinary expenses. There is no room in that budget for spending $130 on a wine kit and supplies. My "wine fund" is empty, having recently been raided for foolish things like food and soaker pads for my bed, a cost of my newfound incontinence. I've got $20 commited from a friend for the next wine making, but I asked her to keep it for now, knowing full well that if it went into the wine fund it would be taken out for something more important.

In the end, I ask myself the question. "To be, or not to be." As Prince Hamlet discovered, there are a great many parts in answer to that question. It hangs not on the edge of a single assumption. In my case, it should not be all about money, but it's a big part, large enough to overshadow other considerations. What is my quality of life? What are the things which make it better, or worse? How badly am I impacted by the things I can, or cannot do? Most importantly of all, is it really worth it, either wine or life?

Hamlet's answer is to contemplate what death will bring, not what life will bring. I would rather contemplate life, and make the wine. I've got $20. Now all I need is $110 and a self-commitment not to spend it on silly things like home insurance or groceries or medical supplies. I can do this.

Thursday, 18 January 2018

Another New Normal

There was blood coming out of my penis this morning. It happened after the in/out catheterization, so it's almost certain the HCA scratched either my urethra or bladder during the insertion process. To steal a comment from my brother when my Dad had a similar problem, "That's not normal, is it?"

No, it's not normal, at least not for normal people. But I am no longer normal in any sense of the word. No normal person has his or her bladder drained twice a day with a catheter. No normal person is on three different blood thinners and anticoagulants. No normal person lives his life with the kind of intrusive treatment I get on a daily basis.

Getting knicked by a catheter is normal, for those of use compelled to use them. Every now and then you are greeted by the sight of blood in your urine. What you learn to do is check it for colour and density. Bright, fresh blood is not so much a problem. Old, clotted blood means it's been there a while. That's a bad thing.

You know what else is not normal. Living in a wheelchair, having people come in twice a day to change you, to get you out of bed or put you back into bed, having someone put on your shoes or take off your pants, having to wear these God damned compression socks. Yet all of this is the new normal for me. Just like the blood coming out of my penis this morning.

I don't like this new normal.

Wednesday, 17 January 2018

I'm Not Really That Cheerful

I'm tired. My fingers hurt; arthritis or ALS, I'm not sure. My hands are weak, as are my arms. Typing is slowing down, my fine motor movements becoming increasingly difficult. The muscles in my right shoulder are in constant pain from muscle pulls as the few remaining work extra hard to accomplish what a collective of musculature once did for me. My neck is weakening, so my head feels extra heavy most of the time. I'm using the head rest on my wheelchair increasingly.

My HCA just left. I'm moving a bit slowly today, not responding as cheerfully or as quickly as usual. As she left, her comment was that I am usually such a cheerful person. I guess this is true, at least on the surface. Laugh and the world laughs with you. Cry and you cry alone. ALS is very much a "cry alone" kind of disease, so I constantly wear the mask of cheerfulness.

My reality is much darker, much more bleak. My predominant emotion these days is sadness, followed closely by immense frustration. Deep in the back of my emotional landscape is anger and bitterness, far enough back that most people don't see it, or feel it. But I do. I feel all of these things and more, all the while producing this false front of cheeriness and happiness in the face of tremendous destruction.

It's getting more difficult as I see more clearly my end of days. I count in days and weeks now, at best. While I want to live a long time, my reality is somewhat different. It's getting difficult to pick things up, such as a cup of water or coffee. I wear out easily when engaged in physical activity, so I don't get much done in a day. I'm now trapped in a wheelchair without a lift function, so everything above chest level is beyond me.

How do I feel? Not good. How do I keep going? I don't have much choice. Why do I seem so cheerful? What else should I do? Be grumpy, miserable? Should I let my frustrations spill out onto those around me? What I really should do is simply die. That would be the easiest solution. The problem is that I don't want to die. So the easy route is closed to me. I will take the more difficult road, living until I can live no longer, dealing with this devastated emotionaly landscape as well as I can.

Tuesday, 16 January 2018

Lost Time

I've had a challenging few days recently, especially around time and timing. What with late home care and missing taxis, time has been chopped out of my days, leaving me little or not time to write. There have been a couple of comments as to how I perhaps should be grateful that home care came at all, even though late and without the required skills and that at least the taxi finally got to Costco notwithstanding a 90 minute delay. My brother went so far as to suggest that there is no grand conspiracy against me with these things.

He's right. There is no grand conspiracy. What there is, however, is a complete failure of understanding on the part of those who don't face the difficulties and constraints that those of us with severe limitations do face. It all has to do with time. In general, I don't have a lot left. In specific, my days are short enough such that any failure of time or timing can have a fairly dramatic effect.

My days ostensibly start at 10:30 AM. This does not mean I am up and about at that time. I am simply awake, a limp body awaiting the ministrations of a trained Health Care Aide. At 10:30 AM, I am ready for clean-up, peri-care and an in/out catheter. This can take anywhere from 15 to 30 minutes, depending on whether or not I soiled myself in the night. After this, I get slung from bed to commode chair, and wheeled in over the toilet to spend my time awaiting a bowel movement, anywhere from 20 to 45 minutes. Remember, I don't have the muscles to push; I am compelled to wait. After that, assuming I don't have a shower or exercises, something which happens on Monday, Wednesday and Friday, I am returned to my bed for condom catheterization and dressing. Usually this takes anywhere from 15 to 30 minutes.

All in all, with the morning needs, an awakening of 10:30 AM means I am in my chair and ready to face the day about 90 minutes later, usually at around noon. Even on shower days I can usually hit this mark, except shower days are also exercise days, making it more like 1:00 PM, after a 10:30 AM wake up. Since my evening home care arrives at 9:30 PM, ostensibly, that means I usually have all of 8 or 9 hours in which to complete my days, minus, of course, the 2 hour nap I need in the midst of most days in order to rebuild the energy lost in the morning's activities.

So take yesterday as an example. I finished shopping at Costco at 6:30 PM. Lots of time for me to get home, unpack, eat a bit of dinner, and be ready for Kabira's 9:30 PM arrival. Except the cab company screwed up. The first cab they sent, within about 15 minutes, was not a wheelchair cab. I take some responsibility for this, as I did not order the cab. The Costco supervisor did, and he may have forgotten to say that I needed a wheelchair cab. The second cab they sent simply did not appear. After about a 40 minute wait, I called the cab compay again and was told the driver reported having picked me up and dropped me off. I reported the untruth of that statement.

By the time an actual wheelchair cab arrived, it was 8:00 PM, an hour and a half wait for a cab. It took about 20 minutes for me to get home. As it happened, Kabira phoned just then and asked if she could come at 9:00 PM. I could have said no, but there was an advantage for me if she came early. She could help me put away groceries. It's not in the care plan, but it meant she could get in and get out early. All in all, my Monday started at 1:00 PM and ended at 9:00 PM. I lost 1.5 hours due to the taxi, meaning I had 6.5 hours of active time. In that time I had a wonderful visit from a friend and got to spend some time shopping.

My days are limited, both in duration and availability. My life is foreshortened, such that any day or any time I lose is magnified. No, there is no grand conspiracty. Just a complete lack of understanding by those who don't live this life as to how precious hours and minutes can be, and how few of them I have to lose, regardless of circumstance.

Saturday, 13 January 2018

Sediment In My Urine

I have a distressingly large amount of sediment in my urine whenever the HCA's drain my bladder. Both my GP and the urologist I saw the other day say that I shouldn't worry about it. I don't have a bladder infection and I am feeling fine. But worry is my super power, so I did some investigation into why it might be there, and I've come up with a preliminary hypothesis as to how it might have affected me in the past, and how it might affect me in the future.

First and foremost, the presence of this sediment is not always an indicator of a bladder infection, although it can be in many cases. There are any number of reasons for having it in my bladder. In fact, according to both my doctors and the highly intelligent world of the Internet, everyone has this sediment in some amount. The difference is that people who can urinate normally pee it into the toilet without really noticing it. In my case, it settles into the recesses of my bladder and stays there until it is removed by the twice daily draining process.

Secondly, this sediment comes from a variety of things. The sediment you see in urine can be made up of sloughing of tissue (debris), crystals, casts, small stones, or cells. Depending on the type of sediment, the cause may vary considerably. My GP and the urologist both described the strings of white in my urine as "protien strings". I don't really know what that means, but I suspect it might be matter sloughed off my bladder wall.

What really matters is whether or not this material causes, or is related to, a UTI. Hence my hypothesis. I suspect I have had this protien in my urine for a very long time, perhaps for decades. It's normal. What is not normal is the urine retention in my bladder, and thus the protien retention in my bladder. This protien is excellent food for bacteria, making my bladder and wonderful home for any nasty little bugs which could find there way in there. I have a built in infection factory.

Since there was a large amound of food for bacteria in there, and a nice, moist environment for reproduction, bladder infections would not only be expected, but common. This has been the case for me in the past. Since my bladder stopped emptying properly, perhaps as much as two or three years ago, this would help explain the rise in UTI's, and the incidence of sepsis to go with them.

Now that we are draining my bladder twice daily, I am anything but upset about the sediment. What you would normally pee out, I must have drained out. Draining it out reduces the opportunities for infection. At least that is my hypothesis. It works for me. I'm sticking to it.

Friday, 12 January 2018

Please Forgive Me

January seems to be the most expensive month of my year. Without the support of friends and family, I am sure I would be financially doomed, what with an extra mortgage payment, home insurance payment, extra post-Christmas groceries, and what seems like a million little things. For example I tore on of my bottom sheets, the high quality ones that are supposed to last for years. Then I realize that I have had them for more than 5 years and they are laundered much more often than regular usage. So they are wearing thin, whether I want to admit it or not. The set will cost about $230 to replace; it will have to wait.

Notwithstanding financial pressures, January is a tough month. I struggle with the dark days of winter, these long nights that seem to make me want to sleep even more than ALS does. The icy weather keeps me trapped indoors most days, increasing the depression I suffer with. The post-Christmas blues set in as I miss my children more than ever.

On top of the depression challenge, the cognitive affect of ALS, or Psuedobulbar Affect, has either gotten worse or my medications are failing me again. I'm having emotional outburst, struggles with inappropriate behaviour and comments, along with the increased depression. I've increased my medications. It's the best I can do.

At lease I am eating well, drinking well, and mostly enjoying my life. Even with my emotional and cognitive problems, friends remain loyal and forgiving, something I am so thankful for. They remember the old Richard, the person who could stand, walk, and be there for them when they needed it. I'm still trying, but I can also be very trying. All I can do is ask for forgiveness, and plead illness.

Wednesday, 10 January 2018

From Grey To Black

I have transitioned. It was not easy. I now know why I wanted to stop writing. It was because I felt compelled to write about nice things, funny things, positive things. It was a lie and I don't want to lie to make anyone else feel happy or good. I did that for a long time. That time is over. So, while you may find humour and life in this blog, I am in the later stage of ALS. My medical chart reads "Advanced ALS". I am still living with ALS. It has become a dark, difficult life.

I am no longer independent, not in the least. I can no longer dress myself. I can no longer pick up things off the floor. I can no longer make a decent meal, clean up after myself. I am incontinent both urinary and bowel. Fortunately I am still fairly regular, yet on a consistent basis I shit myself and piss myself. Catheters fail. I hang just a moment too long in the sling. My body betrays me, as it has been doing for years now.

It is the end of day, coming into night. The sun has set creating darkness out of what was a grey sky, the light of day much like the light of my spirit, slowly moving from grey to blackness.  I am at home now, after heading over to the mall, where I was compelled to ask complete strangers to reach things for me too high on shelves or too tightly attached to fasteneners. My arms hurt from this small excursion

This is the most difficult time of day for me, where I am home alone with nothing to do but contemplate how ALS has destroyed so much of my life. It has destroyed my body, my intellect, my judgement, my spirit. It has crushed what I was, destroyed what I might have been, obliterated what the future could have been for me. This is the hour when these thoughts rise most, when they overtake me, driving me further from the grey to the black.

These feelings, these thoughts, are not abnormal. They may be a function of depression, a persistent side effect of ALS. There may be medications to offset some of them. However they are a constant part of lonely evenings wondering how bad it will have to get before I decide to end it all. As I write, there will be more of this, more honest expression of how shitty it is to live with "Advanced ALS", more of what seems like depression.

Do not try to cheer me up. Do not tell me to increase my anti-depressants. Do not tell me to look on the bright side. Do not tell me there are others worse off than me. Do not take me for a fool; I already know these things. And I really know what it is like to live with ALS. You don't get to say anything unless you know this too.

Tuesday, 9 January 2018

It's My Own Fault This Time

I have to give credit where credit is due. My HCA's have figured out this condom catheter thing, especially the part about getting the retainer band right. I have for days now without an incident. The catheters have held so tight that the evening HCA has had trouble removing them! I also have to post blame where blame is due, pointing that finger right at myself.

Today Kathy put on my catheter as usual. It held, as usual. Right up until the moment when I thought I could improve on things. For the last few hours the tip of my penis has been tingling, kind of painful. I attributed this, and probably rightly so, to the penis band being on too tight. When it gets that way I usually loosen it ever so slightly, but not past the point where the head of my penis can slip through and retreat into my body.

Today when I loosened the band, the pain did not stop. Not thinking that it could be something else, I loosened it again, just the slightest fraction too much. The instant, the very nanosecond in time, when the head of my penis could slip through the band it did so, retreating at full speed back into the warm shelter of my body faster than a clam's neck slips into the depths beneath grasping fingers. As this backwards retraction took place, my bladder decided to punish me even further, releasing the results of the litre and a half of water I have had to drink so far today. The pressure shot the condom catheter off like a balloon off the end of a water hose, spraying me profusely as it went.

So. Now I am wet, and without catheter protection. I am going to try to attach one myself, something I have not successfully done for quite some time. On the plus side I have plenty of towels near at hand, and a washcloth for my hands. Yes, I need it. So much for ALS patients retaining control of their bladder. It's another one of the great lies of this disease.

Monday, 8 January 2018


Maybe this is it. Maybe I should just write in the afternoon, after I have had a day of activity but before I've had a night to sleep on it. Who knows what might come out of these fingers!

Today I went for a cystoscopy. This is a procedure that allows your doctor to examine the lining of your bladder and the tube that carries urine out of your body (urethra). A hollow tube (cystoscope) equipped with a lens is inserted into your urethra and slowly advanced into your bladder. Yes, I had another thing shoved up my penis today, for the second time. The third will be the in/out cathter tonight. This poor thing is getting pretty beaten up these days.

I wanted to get a video of the procedure. Knowing my hands would shake badly, for more than one reason, I asked the nurse if she could do the video. She said yes, but apparently lacked the technical skill required. I have an excellent video of the first few moments, the all important entry shot, but none of the action to follow. Oh, well, perhaps this is for the best.

The camera, duly inserted provided an interesting display of the tour up my eurethra, through the uninary sphincter, then through my swollen prostrate, ultimately arriving in my partially filled bladder. I noticed immediately a lot of floating material, white strands of something or other. I asked the doctor about them but sort of brushed me off. He was in a hurry to check my bladder wall, something which appeared to be tremendously unexciting.

After a few moments of looking around he pulled out the cystoscope and pronounced that I might have another infection, or I might not. I asked about the strands of floating material. His response was that these were more likely a result of me not drinking enough water than an infection. He seemed uncertain, and was more than happy to leave that decision to my GP whom I will be visiting tomorrow. In other words, all cystoscopy and no information for me.

I took the bus home. Hmph. We'll see what tomorrow brings.

Sunday, 7 January 2018

Because I Can

I went shopping today, nothing special, just stuff I need for personal care, like some Dark Rum and some Spiced Rum. So much for cautious budgeting this month. Nonetheless, shopping has an almost entirely different function in my life than it has in so many others. This seeming chore is an opportunity for me, a chance to get out of this four walled, snow-bound prison in which I am held captive by the whims of weather for much of the winter. I get to go outside, breathe the sharpened air, feel the chill wind on my face, the rest of me appropriately covered to withstand Calgary's unpredictable shifts in temperature and precipitation.

Going out in the winter is enough of an adventure on its own, with the cold and snow. It is, however, made exponentially more difficult by the inanity of our fair city's street and sidewalk clearing policies. The city demands that residents clear the sidewalks in front of thier homes, on pain of a substantial fine. On the other hand, Calgary exempts itself from the self-same policy on sidewalks crossing public land such as parks and medians on corners.

The city has 850km of "pathways" but only clears 400km of them, apparently none in my neighbourhood. On top of that, while Calgary is diligent in clearing major roads, it waits for a Chinook to melt the snow and ice on less travelled roads. Many stretches of less traveled road are subject to the vagaries of shadow and wind, such that they remain icebound all winter, often well into spring.

Use the sidewalks, you say! Sure, except that same policy for sidewalks in front of residences and businesses does not apply to the wheelchair cut outs, if there are any, along the various sidewalks and medians. On top of this clear impediment to access, the city's highly efficient snow clearing system instead plows snow into these cutouts, making near impassable berms at the corners where streets are plowed and where locals have done a reasonably decent job of clearing sidewalks.

Those heaps of snow at the end of a sidewalk can make passage nearly impossible. On a great many attemps, such as today, I am forced to rely on the help of fellow Calgarians to rescue me from these snow banks after I have tried to make it across the street. When I hit them I usually plow in, shoving snow up onto my wheelchair footpads and over my shoes, further freezing feet and toes already suffering from poor circulation and lack of movement thanks to ALS.

So into all of this I go, sometimes taking sidewalks, braving the snowbank on the corner, sometimes taking the cleared sections of roadway, sometimes making a lane in the dirty snow, seeking the grip of gravel to move forward. The cars wait, drivers patiently seeing what I am attempting to do with rare complaint. There have been honks and I have returned those salutations appropriately.

I went out shopping today. I drove on sidewalks. I got stuck on wheelchair cutouts; my feet are still icy cold. Ordinary Calgarians stopped their cars, getting out to help me, regardless of traffic. At one point I was so deeply stuck I called 911. Before Calgary Police could get there, a group of locals in two separate vehicles saw me from the major thoroughfare of Shaganappi, turned around, drove through the local neighbourhood until they found me, then escorted me the three blocks past terrible sidewalks and roads, leaving me only when I assured them that the road was clear, or at least clear enough, ahead of me.

What did I buy? As noted earlier, Spiced Rum and Dark Rum, large bottles of each; groceries from Co-op, towels for pericare from Walmart. No true essentials unless you count the salad fixings and sour cream.

Why didn't I take the bus? I could have take Calgary Transit; that would have taken me about 40 minutes to do the run, almost the same as doing it myself. It would also have meant not really getting outdoors so much as moving from apartment to bus to store and reverse. The same could be said of Access Calgary, only it would have taken much longer than 40 minutes.

Why did I do it? Freedom! And because I can.

Wednesday, 3 January 2018

I'm Not Up To It Anymore

I don't feel like writing today. In fact for a number of days I have felt that way, but forced myself to write, about something, anything. I have reached a point where writing this blog is doing less and less for me as each day passes. It is no longer cathartic. Most of my topics are becoming repetitive. And we all know how this disease is going to play out. It's just a matter of when, not if.

I was thinking I might stop the daily posts, at least for a while, to see what happens. Once the pressure is off, will I begin to enjoy it once again? Perhaps I could just write weekly, or when the mode strikes me. I'm not sure. I just don't feel up to it anymore.

Tuesday, 2 January 2018


Kathy made pancakes for me this morning. Not flapjack style pancakes, but the crepe like pancakes made in Eastern Europe. Okay, maybe they are crepes, but my ex-wife makes them and she always called them pancakes. Perhaps it's because crepe is a French word and she is Mennonite, a religion which mostly speaks German or Russian in its origins. Who knows? Not me.

Anyway, I had crepes, or pancakes, for breakfast, or lunch, today. So many variables. So many choices. So many words! Regardles, I ate ten, yes ten, of them. This is a rather large amount, the kind of eating one would associate with a teenage appetite, or perhaps a logger's appetite. Yet here I am, wheelchair bound, largely sedentary, weakened and weary, eating my ten crepes, or pancakes, as you wish.

Even I am surprised at my appetite this morning, my willingness to cram in ten of these delicious treats, made from eggs, milk, flour, and a bit of suger. It might be the sugar that makes them so good. Maple syrup makes them even better, especially since it's mostly sugar too. What that means is that the bulk of my breakfast, the larger portion of my dietary intake this morning, was carbohydrate loaded sugar. Oh, there was some protein in there. Eggs have protien, so does milk. But sugar, including its cousin Maple Syrup, along with flour, are largely fat producing carbs.

Yet here I am, pleased with myself. I ate a big breakfast. I have a full belly. I am consuming at least some form of nutrition, although many would beg to differ on the nutrient content of ten crepes. I don't care. I have ingested calories, even a bit of fibre. Tonight I will have a decent supper too, thanks to a visit from a friend whereupon I will make a pork roast that I should have made yesterday but didn't because I was home alone and didn't feel like cooking.

Food is important. I need to eat. Most days I get lazy when it comes to dinner, eating prepared foods, frozen meals, or, more often, nothing but snacks. My evening calories are more likely to come from a bottle of wine versus something actually healthy. It's not totally bad; there is usually some food or food-like substance involved too. But breakfast, thanks to my HCA's, is the real meal of the day for me now. So I am making the most of it.

Monday, 1 January 2018

Happy New Year's Day

The sky is almost an unreal azure blue today, deep, rich, never ending, unbroken by cloud or shadow. The snow on my tree glistens, sparkling with the light of a thousand little diamonds, the top crisply frozen, hanging onto the branches in a solid, unshifting shape. The temperature is warming up from an un-Godly cold low of -40C to an almost tropical -12C right now, rising even further to a high of 6C tomorrow. The Chinook wind is moving in, drawing warm air over the Rockies, down the Bow River valley, into Calgary.

Unfortunately the warm weather, such as it is here in Calgary, will melt the Currier and Ives picture outside my window, the wind blowing the branches free of the icy weight, turning the sidewalks into slush piles which will re-freeze in the cold of night, turning roads into a slick rink of melt water over top of an ice base. There will be more accidents.

It doesn't really matter to me. I am a shut in this week, at least until my power wheelchair is repaired. I will stare out my window, watching traffic go by on the street, watching the jostling of cars in the mall parking lot, watching people young and old carefully pick their way from their cars to the mall entrance, on unsteady legs already struggling with cold, wet, weather.

I'm not sure if this is perhaps a predictor for my year, this new year according to the artificial construct of our Julian calendar. I wonder if, as I progress this year, I will spend more time in my apartment, looking out my window. That is what happened last year. I found myself increasingly willing to stay home and watch the world go my rather than struggle to get into my truck, or transfer to my PWC so I could go across to the mall. Last year I made what I thought was that final transfer, no longer to use my truck or manual wheelchair. This week is different with my reversion to the manual chair, my PWC sitting broken and idle in my bedroom.

My progression continues. Just as I wondered last year if it would be my last year, I wonder today if I will make it through this year. I must confess I have been a very poor judge of my own longevity. I still struggle with whether this is a blessing or a curse, this longevity of mine while I live with this horrible disease. Yet here I am, celebrating my sixth New Year with ALS. I have seen so many come and go, so many make the decision to live with machines to do their breathing and tubes for their feeding.

I am breathing on my own. I just finished eating a massive sandwich, the kind Kathy makes for me every Monday morning. It's a pretty good way to start a day, a week, a month, a year. My only challenge is picking it up, something which I can still do but am slowly losing the ability to do. It's like the coffee cup beside me, full of coffee, increasingly heavier as time goes by. How slow will it go? I don't know. I'm just happy that I have today, with the clear, blue sky, with the beauty of the crystalline snow, with good food, with family, with friends.