Saturday, 29 September 2018

A 1600-year-old joke

This is David writing once more...

Richard and I both liked Monty Python.

One of Richard's most-oft quotes (as it is for most Python fans) would be hauled out for any appropriate (and often, inappropriate) occasion:

"He's not pining! He's passed on! This Richard is no more!
He has ceased to be! He's expired and gone to meet his maker!

He's a stiff! Bereft of life, he rests in peace!
If you hadn't nailed him to the wheelchair he'd be pushing up the daisies!
His metabolic processes are now history! He's off the twig!
He's kicked the bucket, he's shuffled off his mortal coil, run down the curtain and joined the bleedin' choir invisible!!


'Dead Parrot Sketch', Monty Python, 1969 (modified)

I don't know if Richard knew this, but the concept behind the skit (that a dissatisfied customer is returning a parrot to the pet store on the basis that it was dead when he bought it, but the storekeeper keeps making excuses for the parrot's lack of response) goes back as far as 400 AD, documented by Hierocles and Philagrius in a compilation of jokes titles "Philogelos: The Laugh Addict".

In this Greek version, a man complains to a slave-merchant that this new slave had just died.  The merchant replies, "When he was with me, he never did any such thing!"

I think this is therefore, very fitting to apply to Richard's life - he loved humour and history, and this combination suits him very nicely.

This information relates to a 2004 BBC poll on comedy sketches, where the Python Parrot Sketch took more than double the next highest number of votes as the Number One best sketch.

The Python's "Four Yorkshiremen" was #2 ('you had a house?? Luxury...  when I was a lad of 3, I'd have to get up in the middle of the night, lick the road clean around the garbage bin where 12 of us lived, scrounge for food for my 27 siblings, work 19 hours at the mill for tuppence a month, then Dad would thrash us to death before bed.  I'd have given my left arm to live in a house..."   "Well, by 'house' I meant the cardboard box we lived in - it were a house to US!"), etc...

And then, perhaps fittingly, #3 was the Little Britain characters Lou and Andy (Andy was disabled & in a wheelchair).  Everytime Lou went to some extreme to make accessible arrangements for a hotel or access to a movie theater or something, Lou, in the background, would just stand up, walk around & do some stuff, like go for a swim in the pool - or just pee into it - before returning to the chair as Lou turned around to further assist him.

I felt like a Lou more than once while Richard and I were travelling...  :)

Thursday, 27 September 2018

Wow, yesterday REALLY sucked...

Friends of Richard McBride;
This is David writing on his behalf.
It is with great sadness that I must announce Richard passed away suddenly on Wednesday afternoon, at his home in Calgary, as he wished.
This was not ALS that got him! He beat that, at least… he passed quickly, likely from a heart attack.
He did not want anyone to be sad for him being gone; he wanted everyone to be happy for having known him, even from afar.
I for one, would not be the person I am without having met him, and will always treasure the times we had together – whether in a group at trivia nights, in clumps of people at his apartment for dinner & parties, and mostly for our time spent on the road, exploring strange new places, seeking out new things and new friends, and boldly going where no wheelchair has gone before!
He will be missed – his wit, his wisdom, his sense of humour – all words to be polite when I can’t write the real stuff here.
There will be a few informal gatherings in the near future – specifically, no funeral service – but will allow his friends a couple of opportunities to get together and toast his newest adventure.
More news to follow in the next few days, as certain things are decided & plans worked out.
Just remember, Richard was LIVING with ALS, and not DYING from it.
Your condolences are appreciated, and know that he cared about everyone who cared about him.
As for this Post's Title: he would have loved it!
Stirling Castle, Scotland, 2017 - A rare photo where I got a smile out of him!

Tuesday, 25 September 2018

Memory Loss

What day is it today? Oh, my computer says Tuesday. I used to have a snap sharp memory, carrying dozens of details and dates, phone numbers and email addresses. These days I have trouble remembering what day it is, sometimes even what month it is. I lay this loss of short term, and even long term, recall is due to the complete shift in my lifestyle, aging, and, to some degree, ALS FTD. Regardless of the reasons, the memory is gone.

If you had asked me a decade ago things which I thought were important in my personality, good in my person, I would have said things like generosity, helpfulness, accepting, flexible. Those things are still within me today, unaffected by ALS. Memory, on the other hand, is a mental muscle. It is not something you list as an important personal trait, as far as I am concerned. Having a good memory reflects neither well or poorly on your personality. It simply reflects where you focus, and how you focus on the things around you.

Except I hate this loss as well, this missing mental acuity. I dislike that I am so unbusy that I forget what day it is. I hate that I miss things, even when I have them in my calendar, because I forget to check my calendar, and I miss the reminders, or forget them as soon as they have played. I hate that I miss my children's birthdays, depending on Facebook to remind me, as unreliable a source as there ever was. I hate that I can't remember what I bought at Costco today without doing a fierce mental grilling.

My Dad's mind was fairly sharp until he died, but nearing 80 had its impact on his short term memory. My Mom is dealing with the early stages of Alshiemer's, so her short term memory gets a pass. Yet she was sharp as a tack right up until 80. Then there is me, failing in body and mind, at the ripe old age of 63. I'm an easy 20 years off the pace, growing old and weak before my time. The loss of short term memory is only one thing; there are many others these days. All of them leave me worn and wondering. Is this really worth it? For now, maybe. Maybe I forget what makes it matter, or not matter. Maybe I just go on without thinking, without remembering.

Monday, 24 September 2018

Sleep Day

I've been sleeping all day. That's what can happen when you take a Zopiclone. You get knocked out, staying there until the full effect of the pill wears off. The funny thing is that sometimes they don't work at all, while other times they work as if taken in industrial strength.

This does not mean I did not go through the homecare process of getting up and dressed. I have no choice in that matter. The HCA called from the front door. I woke up and let him in. He came into my apartment and into my bedroom; I was sound asleep. He gently tapped me on my hip. I woke up and dozed my way through the morning process until my shower. We did exercises, which added to my exhaustion. Then he woke my up even more when he put me in my wheelchair.

All of that didn't matter. I told him to skip breafast; I wanted to sleep. I even passed on coffee. Instead I leaned my wheelchair back and went to sleep until 5:00 pm. I am now awake. I am not hungry. I've had a bit of water to drink. And I am ready to go back to sleep.

Sunday, 23 September 2018


Rough night last night, after a very busy day yesterday. There are all kinds of unhappy little things happening to me these days, the kinds of things that can really grind you down. You would think I could get over some of these things, recognizing that they only exist because of ALS. Unfortunately it's the reverse, that they remind me of what it was to not have ALS.

When I eat these days, I put as much on my shirt as I do in my mouth. Unless it is something I can clearly stab, like a piece of meat or a solid vegetable, or perhaps bread if it's got gravy on it. I can do soft stuff that clumps together, like mashed potatoes, but it's a 50/50 shot at getting it to my mouth. My best chance of eating a relatively mess-free dinner is to lean back in my chair so I am not lifting as high with my fork. As to a spoon, the odds go way down. I spill with every lift.

I ate my dinner in the living room last night, a nice green salad with taco beef, cheese, and lots of lettuce. Mostly the lettuce was stabable. It was the taco beef and cheese which were problematic. So now I have this awful mess of dried up beef and cheese, alone with some escaped greenery, crusted onto my living room floor. I'm going to ask my morning HCA to clean it up. I just hate the mess in the first place.

Then there is the spillage from my wine, water, or adult beverages. I simply cannot lift any beverage container without my shakiness creating waves in a glass, most of which splash over the edge, either on to me, or onto the floor, or, when I'm in bed, then onto my sheets. I have reverted to straws now, yet even they can be a challenge, wiggling about in the glass as they do while headed mouthward.

It's all the latest level of frustration. I have to live with it. I don't have to like it. I don't have to apologize for it. It's just the latest part of living with ALS.

Friday, 21 September 2018

I Have A Friend

I have friends; many good, helpful friends.

I have a friend... who comes to visit me on a regular basis, and sometimes even on an irregular basis. Whenever he is nearby, he makes it a point to check on me, asking first what my energy level is like, then dropping by, often with a few beers. When he visits, he will make me dinner if needed. He opens a bottle of wine for me, getting a wine glass down from my now unreachable shelves.

I have a friend... who loves to visit, bringing her dog with her. When she visits she does almost anything and everything on the "Help Me" list I keep on the wall. She both cooks with me, and cooks for me. When I am in trouble, I know I can call on her, unless, of course, she is at work. Even then, after a long work day she will still come here to help me, to make sure I have eaten, to go shopping with and for me.

I have a friend... who makes it a point to help me financially each and every month, reliably, without ever asking what I do with the largess he sends to me. He visits when he can, as he lives out in BC. He knew me before ALS; his friendship transcends both time and ALS. I miss him, and look forward anxiously for the next visit. We had great fun before ALS, and we continue to have great fun after ALS.

I have a friend... who I can count on for both the big things and the small things in my life. He is generous with me, taking time to visit, helping me with tasks around the apartment, and even providing financial assistance on a regular basis. If I am in trouble, if I need some help, I can call him. He is trustworthy and dependable.

I have a friend... someone whom I have never met, yet someone who provides support on a regular basis, as well as being in touch often by email and online. In fact I have many friends like this, who make my life richer with their emails, comments, and messages. If humbles me that they would take the time, and money, to make my life better.

I have a friend... too many to write about in one blog entry. The include family members, people near and far, people who help in different ways, people who enrich my life. All of you are the best thing in my life.

Thank you.

Thursday, 20 September 2018

Living Like This

Over the last few days I have awoken feeling weak, tired, and upset to my stomach. Tueday evening I had dinner company; Tonny, Dan, and Emily. We did Taco Tuesday. I lasted well into the evening, stimulated by having others around me. Yesterday, by early evening, I felt passably good, although still ready for an early bedtime. I would say I am feeling sick, but I am already sick, so that's no good. It is, I think, the exhaustion of ALS taking an extra turn at beating on my body.

This tiredness is extreme, extending through every part of my body. Even my fingers, even my fingertips feel tired. The weakened muscles in my arms are loathe to cooperate with anything, never mind trying to eat my breakfast. On Tuesday I couldn't finish breakfast; the effort of eating a second egg on toast was too much to bear. Yesterday I managed breakfast but ate a very small dinner, leftovers from the previous couple of evenings.

It seems it just takes me a very long time to get my body going each day. Right now my right arm is spasming from the effort of typing; it's been happening a lot that way. Writing in the morning seems to be more of a task than I can bear some days. I leave it until evening, but then I either have company or I am so tired that I give it up. The best days are when I wake up after a nap, later in the afternoon, feeling like I can at least accomplish something. Then, I write. Sometimes it takes me until late evening to get that strength. Some days, there is none at all.

This is living with ALS, this ever increasing loss of ability, the tiredness, the exhaustion, the weakness, the shaking, the general body distress. I've been on this road a long time, too long. It's difficult, especially when you add in the cares of life we all share; bills, groceries. At least I don't have work to stress me. I think that's a good thing, although some days I wonder. Work was, at least, a distraction, and a solution, from and to the other issues. Now, when I am awake, I just stress over living like this.

Tuesday, 18 September 2018

The Schedule Is Full

My caregiver needs have been resolved, at least for now. One thing I have learned in this process is that nothing is certain until it is done, no shift is filled until the shift is over. As one of my friends taught me, a contract is not a contract until the last cheque clears the bank. Even so, it feels great to have my own caregiving team starting on October 1.

I've already instituted one of the most significant changes to my care plan. From now on, exercises will happen in the evenings, arms and legs on alternating days with Sunday as a holiday. My hope is that this change will mean I am less exhausted in the mornings. In addition, since I set the care plan, I'm comfortable that there will be no arguments when it comes to laundry or such. I'm also expecting my apartment will be somewhat tidier.

What's really great about this team is that two out of three of them are up for travel, especially road trips. They are all in agreement that a travel day does not mean extra pay; they will be paid the normal daily hours. They will, however, get their own room at night. That can be a challenge for costs, but I want to find a way to do a couple of road trips over the fall and winter. I may have to sell my soul to raise the money, but then again my soul ain't worth all that much these days.

The other exciting thing is that two of the three are amenable to live-in; one of them is doing that already but wants some extra work, something I should have encouraged Shelby to do more of. On top of that, one of them knows a person who is explicitly looking for a live-in position. She's going to send me a resume tomorrow.

Now the challenge is the wait until October 1. That's 12 days where a lot of things can change. I hope they don't; you just never know. I'm going to have to remain anxious, probably even after everything kicks into gear. Worry? I can do that, right?

Monday, 17 September 2018

A New Hire

I've hire my first caregiver in the journey to replace Shelby. She will be the "coverage" person, intended to cover weekends and holidays. It's good to have that done. Tomorrow I am expecting to hire either one or two more candidates to cover the "full time" slot; one to work most days and another to work a couple of evenings a week.

This whole process has demonstrated to my why it has been so difficult for CBI to find competent, dedicated workers to care for me. As the supervisor said today, while training yet another new person, "there are those for whom this is a passion, and those for whom this is just a job." I've seen a lot of that in both the resumes I've reviewed and the people I've interviewed. What I have come to re-learn, as I have learned in the past, is that trusting my instincts along with a steely-eyed resume review, is the best way to do the hiring. If something feels off, listen to that feeling.

I'm ready to get back to self-managed care. It's a fair bit of work on my part, although David has agreed to help me with the paperwork. I actually thought about hiring someone for five hours a week just to provide an hour of supervision and coverage each weekday. I had someone specific for that role, but she can't do it, so I let it pass.

The live-in role is still a working plan, but the urgency is gone with live-out staff on board. The live-in would give me companionship along with care, providing me with a roommate for at least some of my days. I liked that when Shelby was here. I would like it again. For now, though, the first bridge has been crossed. Christine starts next Sunday or Monday, depending on what the other caregivers want.

Sunday, 16 September 2018

Another Winter

I've reverted back to my lap desk. It's easier for eating and typing than using the dining room table. It also allows me to write whilst sitting in front of my window, looking at my tree. Today the sky is dim, a soft grey from horizon to horizon, not quite threatening rain yet not quite providing confidence enough to go out without a coat. There is a chill in the air as it struggles to warm up past freezing.

It may technically be summer for another week, but fall is definitely here in Calgary. The leaves have turned on all but the most hardy of deciduous trees, many of them already fallen, scattering on the grass like a poor man's carpet, showing bits of green through the covering pattern of yellow. The sidewalks and streets have been attacked by the street sweepers and landscapers, leaves thrown into the gutters, there to rest until the next rain or melting snow pushes them downwards where they will clog the gutters, overflowing them into the streets where passing traffic will turn it all into a glorious mess.

It doesn't rain here like it does on the coast. Calgary rains come and go, rather than settling in for months on end. The horizon here is open, rather than encamped by mountains on almost all sides. Certainly I get to see the mountains, often. They are an hours drive to the west, yet visible from here within the city on a clear day, and most days are clear. Even this cold front which brings the clouds and showers will be gone by tomorrow, only to return in a few days, then once again leave.

When the cold of winter finally arrives, perhaps in late October, the skies will be brilliantly blue once again, clearing the air, making the distance seem immeasurable, bringing the far mountains into near focus, spiking the air with a chill. Then too, the winds will come, making me all the happier to sit in front of my window, warm in my apartment, watching the wizards of winter wend their way.

I hope I am still here for that. It would be nice to have another winter.

Saturday, 15 September 2018


I'm at sorry I haven't posted lately. I've been mourning the loss and failure of my sex life. It's gone, it's just gone, and I really miss it.

I don't really feel like writing a lot these days. In fact most days I don't feel like writing at all. It's not so much the work as it is that I just don't feel like I have anything left to say.

The truth is I'm tired of living with this disease. I'm tired of life in general this way, and I don't really know what to do anymore. I wake up each day. I eat my breakfast, and I go on. Unfortunately much of that go on is just sitting in my apartment watching Netflix or looking out my window watching people walk through the parking lot across the street.

No, I'm not going to end my life anytime soon. I'm just not having a lot of fun. I do enjoy time with friends, but there is no one to hold me during the day or lie with me at night. I'm alone, alone in my fight with ALS, notwithstanding all of the others around me who struggle with the same battle. No matter what you say, we all do it alone when it comes to the end, or even part way through.

This is a terrible disease, a disease that I have to deal with in the terrible part right now. I just wish there was a little fun to be had.

Thursday, 13 September 2018

Laundry And Shopping

My friend Brad has been over for most of the afternoon. He just left about 15 minutes ago. I asked him to come over today, to help me with a couple of household chores; doing some laundry and doing some shopping. In both of these there is a small story, enlightening nonetheless.

Laundry is a task which has been taken care of by my HCA's for a very long time, at least a couple of years. Yet on Monday when I asked my newest HCA to do a load of laundry, she refused, declaring it not to be in the care plan. I repeated the request on Tuesday, at which point she got quite huffy, declaring that she is not supposed to do work that is not on the care plan. I asked why all the other HCA's were doing it for me, at which point she got even huffier. I backed down, deciding instead to talk to her supervisor.

The RN Supervisor came to visit today. I asked her about the laundry. She read the care plan, only to tell me that a some point the "Wash" checkbox for laundry had been checked, but nothing else. She went on to tell me that even the "Wash" instruction had been crossed out. I asked about the past, to which she shrugged her shoulders, telling me they shouldn't have been doing it. It is not on the care plan.

I wonder about a couple of things here. Why, knowing full well that I cannot do my own laundry, would my AHS caseworker have started to note "Wash, Dry, Fold", only to scribble it out after checking the first box? Second, how could this process have gone on so long without someone noticing, until a fairly lazy HCA seeking to avoid a task discovered the error?

In defence of the RN Supervisor, she had been trying to contact my AHS Caseworker to get an updated care plan. The reality is that time allotments for me are based on the care plan. If there is time allotted for doing laundry, which there is, it had damned well better be on the care plan. If no, someone is either paying for a service not delivered or not being paid for the work they do.

Shopping, on the other hand, is a task home care will not do. It is not within their mandate. I don't mind so much; I enjoy doing my own grocery shopping. The problem is that increasingly the barriers to my life make it more difficult for me to get out of my building. This makes going shopping a challenge, one I will often pass on, instead asking friends to pick up things for me. Then, every once in a while, I will impose on one of my friends to make a major shopping trip with me. It's fun for me, and I get some great company.

Both of these situations highlight the differences between self-managed care and vendor-managed care. With vendor-managed care, a case worker with AHS writes the care plan. Part of their mandate is to deliver only those services with they feel I need, within the AHS guidelines. On the other hand, with self-managed care, I write the care plan with whatever I think I need, as long as I stay within the AHS budget. That's why I am working so hard, why David and Anne are working so hard, to get a self-managed caregiver for me. It's what I will need increasingly as I get worse and worse.

Wednesday, 12 September 2018

No News From The ALS Clinic

I went to the ALS clinic today. I really don't care to go to the clinic anymore. First, the appointments are in the morning; this morning I had to wake up at 8:00 AM to get an Access Calgary bus at 9:10 AM for a 10:30 AM appointment. Second, the transit logistics are terrible; I finished my appointment at 1:00 PM, the Access Calgary bus was scheduled for 2:00 PM, it took 2 hours to make the 45 minute trip. And third, I learn very little that I already don't know, if anything at all.

This marathon effort today produced very little news. My lung volume is low while my breathing is fine. My diaphragm is a lot weaker, but my CO2 output is normal. Oh, and I gained 1 pound a month over the last year, all on my belly. It was interesting. On hearing the weight gain, the respirologist said "Oh, that's good." I'm not sure if it is good because I gained weight or good because I didn't gain a lot more weight.

I've come to the place where I am now comfortable with the fact that I am going to continue to gain weight until I stop eating. I plan on eating and drinking for as long as possible! After all, I am in no position to exercise it away. I am the most sedentary of sedentary people, immobile from the shoulders down. As to when I stop eating, I'm fairly sure that event is well on it's way. I'm having plenty of trouble getting the fork to my mouth these days, and it's only going to get worse.

When it comes to my breathing, I've got a long way to go yet. There are plenty of people out there with only one lung; that means a lung volume capacity of 50%. I can get well below that before it becomes serious. The same is true with my diaphragm and breathing in general. Yes, I get tired, short of breath. Yet I am still breathing well overall.

All in all, it was a "stay the course" kind of a day; nothing dramatic, nothing exciting, things progressing as one might expect. It really kind of fits in with my general approach to this, that I will let nature take its course. That doesn't mean giving up. I\ll keep living as well as I can for as long as I can. Once that comes to an end, so do I. No fuss, no muss, no bother. It just seems like the right thing to do, living one day at a time.

Tuesday, 11 September 2018

Too Tired

I hate days like today, days where I wake up on a downhill slope and the activities of my day simply accelerate the slope. My arms are weak and floppy. My eyes don't seem to want to focus. I started the day tired and have moved on the deeply exhausted. These days, the kind of days which confirm that I am truly unwell, are the ones which I would prefer to sleep through.

After writing the first paragraph I was so exhausted I stopped for 15 minutes. On returning to my laptop, I find myself worse yet. This is it. No more. I will post this simple note in hopes that you all understand.

Monday, 10 September 2018

High School Dropout

Alas, I have become a one armed bandit. My left arm is unable to pick up anything now, even its own weight. A single sheet of paper is too much, that lift forcing me to brace my left arm against something sturdy, usually my own belly, then sort of wiggling my way up. If my arm is not braced against my belly, it simply falls to my side, to rest on the arm of my PWC.

Oddly enough, my fingers on my left hand can type just fine. It is fortunate that keyboard technology has come so far over the years. I remember typing class in Grade 9. We had these old manual typewriters where you had to pound the keys with all your might just to get a letter from key to paper. The Grade 9 class, mostly boys, looked with envy at the girls across the hall in secretarial classes; they had electric typewriters, although many of our looks across the hall had little to do with typewriters. After all, it was 1969. In keeping with putting a man on the moon, their papers just seem to fair whip out of their machines, the automatic margins and returns knowing precisely when their transcription efforts had reached the end of a page.

I did not enjoy high school. It seemed to me just wrong that teachers focused their attention on the athletically competent while those of us with intellectual capability were simply seen as grist for the mill of lumbering senior high students. Bullying, including physical attacks in many cases, was seen as a necessary part of life, needed to toughen us up for some imaginary adult life where physical attacks took place often and were not remonstrated by laws. In one notable incident, I remember being stabbed in the leg with a #2 pencil, always those damned pencils, where the graphite snapped off in my leg, there to remain right up into my adulthood. When I complained to the teacher, he professed to see nothing, going on to say that if I could walk I was fine.

I guess now that teacher would have to concede I am not fine. I cannot walk. His measures for health and medical acumen did little for those years. It was this same teacher who came up with the game of "murder ball", where the objective was to put people out by slamming them as hard as possible with a soft play ball while running about on an open field. It was kind of like dodge-ball on steroids. Needless to say, I went out early, and often, repeat hits being a perfectly acceptable method to get you back in. The game was ultimately cancelled by the school administration after a few boys, fortunately not myself, were seriously injured.

There were others in my school who had it worse off than me, who were smaller than me, who were less capable of handling those wretched physical monsters from Grade 11 and 12. I managed to escape Mission Secondary School at the beginning of Grade 10, fleeing my father's home, another place where wanton physical strength was all that mattered. Regardless of all that, school was done for me, at least public school. I dropped out of Grade 11, never to make it to the graduation stage.

Saturday, 8 September 2018

Will You Be With Me?

Will you be with me when I die? I've been thinking about what that means, especially with the death of my friend Pat. It doesn't mean what you might think it means. It doesn't mean standing there beside my bed. It doesn't mean sitting with me holding my hand. It doesn't mean constantly caring for me. What it means is will you be aware of me, thinking of me, holding my heart with yours? Will you be aware of how my life has gone in its recent days? Will you know who to call to find out what has happened to me? Will you be wondering what I am thinking or feeling in those last minutes as I pass from this universe to the next?

I've learned a great deal about this lately, how people can be right beside you, yet not be there with you. I've seen how people from a great distance can sense the moment of death, or at least the hour of death; people who are so intimately aware of the other that separation is more of a concept than a reality. I've also learned that many of those who say they wish they could be with me really mean that as an idea, perhaps even an excuse.

There are those truly unable to be in physical touch, people like my Mom who can no longer travel. Then again there are those who talk about connection with no plan whatsoever to make that connection. I know there are people out there who's financial situation precludes any chance of physical touch. Still, the truth is that if you want to be emotionally in touch with someone, the first step is to actually be in touch with them, often, if not in person then at least in a personal way.

It's a tough thing, making some of these choices, particularly in my case, where timelines are slow and uncertain.This November 22nd will be the sixth year since my diagnosis. For at least the last three years my constant thought has been "If I am here next year..." Yet I have not died. Each year I have felt closer to death, less capable of living. Each year I have wondered if this was it. That uncertainty creates a real challenge for those who want to get in that one last visit, who want to be present with me.

Here is my advice. For those you love, treat each visit as the last visit. Treat each moment as the last moment. Treat each contact as the last contact. Leave behind no unfinished business, no cloud. If we part happily, then you will be with me in my last moments. It is my wish to take a treasure chest of love and memories with me. I save the precious moments in that chest the moment they happen. Then I am sure I will be with you, take you with me, as I draw my last breath.

Friday, 7 September 2018

Still Counting

My friend Pat died last night. She was 76 years old. She died young in a country where female life expectancy is 82, a country with excellent health care. Lung cancer took her life. Life is unfair; some get so much more. Ironically her husband, a man of 86 years, is strong and healthy, except that he has dementia, possibly Alzheimer's. Thanks to his illness, he can't remember from day to day this the woman he was with for more than 50 years is no longer here. Yet he is strong enough to get up, get about, and enjoy each day.

When I moved into this building, I didn't know I had ALS. I was diagnosed a couple of months afterwards. I didn't say much to me neighbours at first. I had enough to deal with telling my co-workers, friends, and family. It was a frightful, tearful time. It was when I brought my son to live with me for that first year that Pat asked what was going on. I told her. It was another tearful moment. Right there and then she took me under her wing, a mother hen defending her injured chick, notwithstanding that I was a grown man, or that she had three of her own.

Pat was a fearsome woman, a force of nature. She was the chairperson of our condo board, filled with activity, using her energy to defend and protect our homes from what she felt would be poor decisions by others, never mind that some of them were not. She had an idea of how things should be run, and by God we were going to run them that way.

There was, however, a frustrated side for Pat. At times, many times, she needed a sounding board, someone who could listen without judging, respond without criticising, and most importantly of all, sit and share a bottle of wine with her while she talked, or sometimes listened. She was a natural ally, even when we had the occasional fierce disagreement. Battles with her were loud, fast, and then forgotten.

The ultimate irony came on two fronts. When her husband, Paul, started to show signs of dementia a couple of years ago, it was extremely difficult for her to care for him, particularly as his condition worsened. At the same time I was needing more neighbourly help, something she was constant in providing. Then she got sick; lung cancer. She declined quickly.

We've known for some time that her cancer was terminal. That's where the irony arises. This strong, powerful woman, this mother hen, this woman who cared for me was supposed to live, while I was supposed to die. Yet here I am, almost six years past diagnosis, three years past my due date, still alive, still plugging along. She has left this earth. Her husband, no longer able to live alone, has gone to a care home where I suspect he will begin a rapid decline, not because of the home but because he will have lost his way in life. Yet here I remain, still counting my days.

Thursday, 6 September 2018

Don't Give Me A Miracle

I don't believe in miracles. I don't believe some unseen hand in the sky will come down to cure me with a touch. There is a simple reason for this. Notwithstanding that unrealistic miracle assessment, should something such as that happen, should I suddenly be cured of ALS, that simply opens the door for something else to end my life, perhaps a heart attack, or a car accident, or cancer. To pray for a miracle cure to ALS is foolish. Perhaps one day there will be a treatment or even a cure. As for today, I will live the best life I can in my circumstances.

The previous paragraph does not mean I will passively accept all that ALS is doing and has done to me. I will continue to rage at the dying of the light, something I would do no matter how my life was coming to a close. I will continue to decry the depredations of this disease. I will continue to beg for financial support for myself, for the Alberta ALS Society, for ALS research in general. Next year, if I am still about, I will once again be at Betty's Run, once again asking for team support.

All of this rant arises from a headline in a UK paper posted on Facebook. The headline referenced praying for a miracle. While a cure for ALS will be a wonderful thing, the true miracle is that focus we put on the situation today, the ongoing funding for research, the money for people like me to keep going in the face of all odds to the contrary.

If I want a miracle, it would come in the form of a lottery win, something in the extreme less likely than getting ALS. Perhaps, more modestly, it would be nice to have enough money to go on another road trip, or maybe even a cruise. Yet here I am, living a miracle, enjoying a full life while dealing with the damage along the way. In other words, other than this one little health issue, I'm doing well, leading a fairly normal life, albeit foreshortened.

My greatest concern when it comes to ALS are those lives taken too early; people like Sarah Coglianese who lives with ALS but will leave a young daughter behind.. Yet that same concern must focus on the 21 year old who dies from cystic fibrosis, the 6 year old who dies from brain cancer, or, even more sadly, the 12 year old killed by a drunk driver. There are a great many tragic causes out there. Mine is ALS. It sucks, but then again so does cystic fibrosis, cancer and drunk drivers.

It is not that I am hardened to tragedy. It is simply that I know a "miracle cure" for anything simply replaces one form of suffering with another. If I ask for a miracle, it would be for the young, for those beginning their life's journey. I am in the range of "normal" death, just a bit early. So was the person covered by that headline. I don't need to be removed from the cold hand of death. I need help while enjoying what life I have left, short or otherwise.

Wednesday, 5 September 2018

Eyeball Health

It's been another day of exhaustion, another day of sleeping on and off in my wheelchair, watching Fargo on Netflix, then falling asleep in the middle of an episode. I did not sleep badly last night. In fact I slept right up until the HCA arrived at 10:45 am, then dozed off while she was exercising my legs. Sandra, my morning HCA, is not a fan of these exercises, nor pobably a fan of any exercises at all. I get the feeling that she is not really a fitness driven person, so she doesn't mind if I am only half there during my exercises; that way she can skip a few without my noticing.

Of course this exhaustion is all a part of the ALS game. I actually think I do rather well these days, with about 6 to 8 hours of truly wakeful time during an average day. I also think that my exercises are counterproductive when it comes to my use of energy. Once again I have decided to move the exercises to the evenings, just before bedtime, so that I can sleep off the exhaustion while still gaining the benefits.

My day yesterday was similar, except without the exercises I found myself with sufficient energy to go across the street to the optometry clinic to see about replacing my smashed up glasses. I've now noticed that the frame is pretty twisted too, with the seating canal for the lens squished in the the lens can't rest in it.

The clinic across the street was able to twist things back into reasonable shape, flue together the broken lens, then force it all back togethers somehow. My motto with these kinds of things is "Don't ask; don't tell". They happened to have an opening with the optometrist, so we checked my eyes. Odd as it may sound, my eyes appear to be one of the more healthy parts of my body. My prescription remains unchanged. I have no illnesses associated with my eyes or my vision. I can tell from experience that my night vision is still as good as it has ever been.

How I wish that the rest of my body could take the lesson from my eyeballs. Remain unchanged over time. Don't show the illnesses of aging. Keep going while the rest of me crashes to a grinding halt. Oh well, at least I will be able to see it coming when they stick the needle in me. And yes, that's a very sick joke. I think I'm going to go shopping to buy something I don't need with money I don't have.

Monday, 3 September 2018

No Coffee So Far Today

The sound of things breaking should become the background music for my life, or perhaps the music of my theme song. This morning, another cup. Yesterday, my glasses. The day before, the mirror on my hall closet. All of that would be the melody, of course, The tune would be the everpresent baseline of walls and door frames crunching from low-speed wheelchair impact. This is why I can't have nice things anymore.

Yesterday; or was it the day before, I'm losing all sense of time and space; I dropped my glasses then drove over them as I was attempting to retreat from their potential location. It's kind of like the old days when someone dropped a contact lens, one of the old, hard types. You would scream for everyone to stand still, only to hear the crunch a couple of feet to your left. Regardless, I broke my glasses.

At first it didn't seem unlivable. I could still see through the main portion of the glasses, the glass itself seemingly still adhered to itself. The frames didn't seem too much bent out of shape. Then came the moment when I went to wipe them, to clean them with my eyeglass cloth. I discovered that what once seemed firmly in place was merely a charade, a sleight of hand, a mocking of my hopes and desires. The lens came out in two pieces.

I gathered together what craft tools I could reach, that being a glue gun. Unfortunately this glue does not seem to want to hold to glass, at least not securely, certainly not enough to repair the lens. The glue I need is up on my shelf, far too high for me to reach. It's a theme, perhaps the maudlin lyrics of my them song, that most of what I need is too high, or too low, or too far for me to reach.

This morning came. I arose with frames in one hand and lens in the other. After all my Monday routine, shorn of eyewear, I carried my poor, damaged pieces gently to the kitchen table. Sandra, my Monday HCA, made sandwiches for me, maintaining a tradition Kathy had begun many moons past. I was waiting, wanting her to finish before I attempted assembling, and potentially re-gluing my glasses.

It was coffee time. Sandra had the Keurig warmed up. She was busy with her task so I figured I would get my own coffee cup. I opened the cupboard door. Keeping cups on the counter for myself is a long lost battle with my HCA's, there having been so many new ones that telling them, then having them forget, then telling them again only to have them forget again, has worn me to a nub. The cup, in the cupboard, looked eminently reachable with my grabby stick. I grabbed, only to discover that what I thought was the handle wasn't. The cup came crashing down.

I still haven't had my coffee.

Sunday, 2 September 2018

A Pain In The Arms

And another say seamlessly and quietly melds into the day gone before, just as this one will likely meld into the day to follow. I\m losing track, spending long, wasted stretches of time idly in front of my TV, watching pointless shows on Netflix which have nothing to do with my reality, or pretty much anyone's reality who's not in the Mob or some cartel or other. I am wasting time, an odd thing to do when I have so little of it remaining.

My social life has gone all to hell. I still have people coming over, just not as often as they used to. There are those who I can count on to drop by, given a couple days advance notice. There are those who I know will drop by; I just don't know when. Some weeks are busy, mostly around dinner. Perhaps that's a good thing given that this time of days is when I seem to have my best energy, my most abundant strength.

Speaking of strength, Friday night was brutal. Not only were my arms attacked with this incredible weakness, they were also being ravaged by this severe muscle pain in the remaining muscles of my upper arms. I went to bed, hoping I could sleep it out. Only the pain got worse as night wore on. Finally, at about 2:00 am, I could find no restful position against the pervading pain. I thought to myself, "Tylenol. No; Percocet!" Then I realised I couldn't open the drawer on my night table wherein the drugs lay, let along reach it at all. Then I looked again and saw my Zopiclone right there within almost easy reach as long as I used a grabbys stick. I worked at it for a while, finally gaining success. It was now 3:00 am.

Zopiclone is risky. It has an operating window of about 8 to 10 hours on me, assuming I take one 7.5 mg pill. So taking one at 3:00 am gives me a target awakening time anywhere from 11:00 am to 1:00 pm, perhaps even 2:00 pm given my level of exhaustion. It would be tough getting up if homecare came at 10:30 am, impossible if they came 9:00 am. I was in pain. I needed to sleep. I took the pill. I remember taking the pill. I remember starting to count back from 100. I don't remember 80.

The darkness took me. It took me so strongly that I missed the call from my new HCA, Gurinder, telling me that he would be there before 11:00 am. Then I missed his call from the front door to be let in. Then I missed the call from CBI wondering if I was home and alive. As usual, this was the end of things on their end. Had I been dead it might have been a day or two before anyone noticed, not that it would have bothered me. No, I was alive and woke up shortly before noon, or rather partly woke up.

I called the CBI. After much pleading and explaining, they said they would send Gurinder back at about 1:00 pm. He came, did my morning routine, then put me in my wheelchair. He left. I rolled into the kitchen, at some watermelon, then promptly fell back to sleep. Next thing I knew it was almost 3:00 pm, and the damned Zopiclone was still hitting me. I was seeing double. I was seeing things which weren't there! I could barely hold my head up.

In response, somewhere in my addled brain I thought I might do better if I was in the living room. I rolled over there, a little to the left of my normal seating. This was to become important in a moment. I parked, and promptly fell asleep. This was, of course, before I had a chance to take my wheelchair out of gear or shut it off. I awoke a few minutes later with a start as my toes were squeezed into my patio window. I had been driving while sleeping. I backed up, turned the chair off, and was gone until 5:00 pm when Kabira came for my afternoon check.

Kabira may, or may not, have made some dinner for me. I can't remember. What I do remember is her coming back at 9:00 pm, early, to put me to bed. All in all I had been awake perhaps 2 out of 24 hours, perhaps less. Even this morning I had a bit of a Zopiclone hangover. On the plus side, my arms don't hurt.