Monday, 21 August 2017

Cutting My Own Balls

This whole "peeing in a jug" things is not an easy situation. In fact it is fraught with difficulty, even danger. My goal these days it to get through the whole day without peeing on myself. While seated in a wheelchair, unable to adjust my pants, peeing at a right angle with my junk all stuffed up from inside of my underwear, this goal is almost impossible to meet.

Before I go any farther, I need to say that as a man, this whole going pee thing is a lot less of a problem than it is for women pALS. While most, if not all, I have spoken too have tried to keep themselves into transferring from wheelchair to commode, ulitmately they are forced to make an unpleasant decision much sooner than men. Catherization.

The most common approach is the supra pubic catheter, which, like it sounds, avoids the pubic area completely. A small tube is inserted, usually through the stomach wall, into the bladder. In most cases the tube is clipped off. When your bladder is full, you go pee by unclipping the tube, pointing, and letting nature take its course. The step beyond this, when you lose your ability to clip, is a urostomy bag.

For men, as long as we have some arm and strength control, we can always pull out our junk and pee. Or at least that what we would like to believe. In fact getting your penis through the clothing is a realy challenge, especially when that thing wants to hide back up inside your body. To help, you would likely do as I do, pulling out the whole package, allowing easier access to the necessary part.

This pulling and packing takes place in a dangerous environment of zippers and elastic waistbands, creating even more pressure on the situation in hand. It takes a fair bit of pushing and adjusting before everything is correctly positoned. By this time, your poor bladder simply cannot wait any longer. It lets go, while you desparately grab for the jug near at hand before the fountain starts to spray.

If you are lucky, you can get things pointed in the right direct. Then you will realize that pointing directionally while seated in a wheelchair with pants and underwear creating back pressure all creates a situation of "kinks" in the line. You want to. You need to. But you find things moving at a dribble, thanks to the many bends in the road and pressure on the urether. So you adjust, pushing the jug further down, forcing more release room for your troublesome minor member.

That's when you realize that your new jug has sharp edges at the lip, sharp enought to cut soft skin when it slides across while being forced down. The edge of your jug becomes a very dull knife, and you find yourself slicing your own balls with that small, dull knife. You can feel the slight sting, see the small amount of blood. So now you are peeing and bleeding at the same time. Since the bleeding is slight, you know it can wait. You readust, making more smears of blood on your hands and jug.

In the midst of all of this, you start to wonder. "If I get urine on this cut, what will happen?" You see, nowithstanding what you read on the Internet, urine is not "sterile". That is a myth. Urine comes from your bladder, home to any number of bacteria. Those bacteria get lively once they enter the outside air, and even livelier if they happen to find a blood environment. Those cuts can become infected. Ask me how I know.

So finally you are done. Your bladder is finished. The bleeding seems to have stopped. You go to put things away. That's when the "old man" finishing bit decides to make its appearance. Is that cut stinging? It's wet in there. What will happen? In the end, you just have to go on with your life, accepting that this stuff happens. It really does. Once again, ask me how I know.

Sunday, 20 August 2017

Crazy Plus A Bit

I wish I could figure out what people are thinking, what the subtle messages and cues were in their body language. I know it's stupid, but I worry about what people think of me, especially those close to me. I fear their judgement, wanting them to approve of me. In the end I just don't know, can't tell what's on their mind. I do know one thing for sure, their probably not thinking about me at all. It's the nature of humanity.

This emotional insecurity has always been a part of my life. I suspect it has something to do with the challenges in my relationship with my Dad. It was impossible for me to garner any real sense of his approval. He withheld it, know that it was a tool he could use to manage me. It set a pattern for my life, for so many of my relationships. It most likely both created and destroyed my marriage; me, constantly seeking approval, and her, able to judge and direct with that knowledge.

The thing about all of this is that I know my life is drawing to a close. I know I shouldn't really give a shit about what others think of me. I know that those who are with me are here because they love me, warts and all. I know that some of them may draw away is the noose around my neck draws tighter. I know there are those who will be here until my last breath. I know all of these things, yet I still cannot manage to shake my insecurity.

What this demonstrates clearly is that ALS is a disease of the body, not the mind. My mind is as disfunctional as it has ever been, my thoughts as irrational as they ever once were. The only real challenge is struggling with the emotions I get with ALS, combined with the normal emotions in my life. In other words, I get to maintain my normal, screwy insecurity, plus I get the depression and self-doubt that comes with the disease. So, as with everything else in this illness, I am crazy like normal, plus a little extra for ALS. That's just how it works.

Saturday, 19 August 2017

Cookie Time

I'm sitting here, post breakfast, enjoying my cup of coffee. Beside my coffee cup sits a cookie. Yes, one of those cookies. I tried one for the first time last night. I assure you, they are very good cookies. The performed exactly as advertised. The guidance I recieved with respect to preparation and consumption was right on the mark. One of my friends even came over to help me through my first tastes of medical marijuana, in a cookie. Now my temptation is to eat another cookie, right now.

There are a couple of things I need to say before I go to far down the road of describing this experience. First, apparently making 30 cookies from 15g of marijuana makes for a fairly strong dose, approximately half a gram per cookie. My perscription calls for up to 4 grams per day of this stuff. That's 8 cookies. My goodness, I will never be sober again! Second, the cannibis educator told me I would get a balanced, mild high from this particular strain of marijuana. Balanced perhaps, but definitely not a mild high; this was a first class intoxication experience.

It started easily enough, with a bit of light-headedness beginning about an hour after I ate my first cookie. I wondered if this was all there was to it. Nonetheless, I stood by the advice given me and simply waited a bit longer. By two hours after ingestion, I started to feel the full effects of the cookie. That effect continued to rise in intensity until about hour four, then stablized. It wore off, mostly, while I was asleep. There are still some lingering effects; a continued light-headedness, a generally good mood, a kind of calm. This is what I was hoping for.

Oddly enough, my appetite was not stimulated, at least not for food. Water, I needed lots of water. Further, marijuana is not like alcohol; my inhibitions were not lifted. If anything I became more cautious about what I was saying. I knew I was high. I knew I had to watch out for myself. After all, I had a female guest helping me navigate this first cookie experience. In the end it didn't matter. She talked all night, a product of her own high. I listened all night, rarely saying anything. It's kind of funny that she thought almost everything I said was profound. I was so high I couldn't tell you know if I said anything at all.

If, like me as of yesterday, you have not tried marijuana, then the experience is hard to describe. It's like being drunk but without the alcohol. I went through a lot of time dilation experience, momentary stalls of time and thought, and a sense of things taking far longer than they actually did. I completely lost my grip on "reality", but still felt well in control of my physical self. My mind flipped in and out, as if someone else was in my body for a moment. Thoughts spilled out at times; perhaps this was the noted profundity.

Eventually I went to bed. I slept well. Not the kind of sleep from Zopiclone. Instead it was an almost normal kind of night, where I woek up regularly to go pee, where I tossed and turned such as it is these days, where the morning sun woke me up for a bit and then I went back to sleep. Yet it was a solid sleep, a restful sleep, something I don'r really get with the Zopiclone.

I now understand why the doctor prescribed a strain if marijuana with balanced THC and CDB for daytime use along with a high THC strain for night use. This stuff makes me sleep, something I struggle with. The ALS exhaustion is still here; I can close my eyes any time. Getting a solid sleep is what is really tough. The cookies helped a lot in this arena.

So now the real question is whether or not I should eat another cookie now. The effects will be well in place when my guests start to arrive for our party tonight. I'm not sure how they will respond. They've seen me after a few drinks. I wonder how they will see me with a cookie high?

Friday, 18 August 2017

And They're Gone

It's quiet in my apartment today. All I can hear is the background whirring of the fan, pushing warm air around my table, cooling off my feet. There is no sound of little feet pitter-pattering in a gallop from living room to bedroom across the laminate floor. There are no squeals of high pitched voices laughing at their own joke. The is no rakish bellow from a two year old being denied another episode of Paw Patrol, nor the sound of the mad dash to the patio window in order to wave bye-bye to the umpteenth bus leaving the stop in front of my house.

My children, and their children, are off on their long trek back to the Lower Mainland of British Columbia, back to their home in Abbotsford where they will resume once again their routine as I once again resume mine. The routine life of a young family is all noise, bustle, and effort. My routine is so much calmer, so much quieter, so much more peaceful. I am torn between missing their presence and enjoying my rest.

Last night was exceptional. My daughter, Kate, dropped by with one of her friends for a visit. Except it was not to visit me. She does that often enough. She came by to visit her sister and family. Her arrival gave us an opportunity to head over to the mall together; Kate needed to pick up some contact lenses. She had a chance to play with the children, to run off ahead with Charlotte, to share dinner with us. Meaghan had a chance to gossip with her sister, to get up to date on all that was happening here in Alberta. I was left off to the side, simply enjoying their enjoyment of one another.

I even went to bed early, leaving the youngsters to chatter away into the night. I knew I would need that sleep, for this morning was to come early. Meaghan and family left by 8:00 AM, all trooping into my bedroom to hug me and say good bye, the noise of their packing and preparing for departure having woken me some time earlier. Kate and her friend managed to sneak out shortly thereafter without disturbing me, only to return this afternoon to borrow my shower and prepare for the wedding of a friend.

So now I am up. I have time to do something, anything. I am moderately rested, but still tired enough that I could go back to bed. I won't. I will do something, without little helpers. I miss them already.

Thursday, 17 August 2017

Feeling Weak

Not a great start to my day today. I was unable, or unwilling with respect to the effort required, to take my underwear off when I was on the toilet this morning. I asked Sam, my Home Care Aide, to help. Sometimes it is not the actual amount of energy or strength involved that blocks my way. Sometimes it is just the will to do something. I lacked that will this morning.

Then, if you will forgive the phrase, I did a shitty job of washing my ass. In fact I didn't so much wash it as I just let the sprayer on my toilet spray away while I hoped for a good result. Alas, there was not a good result. Once again, Sam was compelled to finish the task. Yes. I did not wipe my own ass today. My arms were too tired to do battle with my body.

I get days like this. No matter what joys or enjoyments are in my life, my body is weak and I am less than willing. It's not a lack of sleep thing; I went to bed at 9:30 PM last night and slept a good 12 hours. Nor was it over-exertion yesterday. I spent most of the day doing nothing. When I was not doing nothing, I was doing very little.

Mostly today it's just because I am feeling weak, weaker than usual. Except that there is no usual with this damned disease. I will go through today, feeling weak. I will do my best to keep going, to be active. But it won't matter; regardless of all other things, I will be weak today. That's just life with ALS.

Wednesday, 16 August 2017

Charlotte Noticed.

There is nothing good about having ALS. There are no positives that come with this disease. There are, however, important lessons to be learned, unique activities that go with being confined to a wheelchair. Some of these are actually pretty neat, fun, interesting. It's not that you have to have ALS and be confined to a wheelchair to experience them. It's just that healthy people are not likely to approach the world in the same ways.

Yesterday was a good example. I wanted to get out a do a bunch of errands. I wanted to spend some time with my granddaughter, Charlotte. So I had her climb up onto my lap while I was in the power wheelchair, and we set out to explore and do errands together that way. It was a five hour journey. It was also pretty terrific.

Our first step was to go across the street to the mall. The new Home Sense store was having its Grand Opening. I wanted to see what was new and different. So did my daughter, Meaghan. So off we rolled. On arrival at the store, Meaghan and Charlotte took the escalator up to the store while I waited for the elevator. Charlotte noticed. Then, wheeling through the store, there were several times where aisleways were blocked with boxes of new merchandise. Sometimes we moved them. Sometimes we went a different way. Charlotte noticed.

After we left Home Sense, Meaghan went back to my apartment while Charlotte and I headed out to conquer Calgary. Our first destination was KenRon Pharmacy, near Foothills Hospital, with our route taking us right through the University of Calgary campus. As we headed that way, we came across road and sidewalk construction, around which we were forced to detour. No problem, except that the sidewalk ramps were uncertain. We ended up on a sidewalk but had to get off and go down the road because there was no ramp at the corner. We eventually made our way past the construction and onto the University pathways.

The route I like to take is past the Olympic Oval; well, not actually past it as much as directly through the lobby of the Olympic Oval as a shortcut. We did just this, at which point Charlotte said she wanted to see the ice rink, something I have never bothered to do. So up the elevator we went, with Charlotte commenting on how the elevator was almost too small for the wheelchair. We went over to the observation area, where we saw speed skaters practicing on the ring. Excitement! We stayed and watched for a bit, something else I have never bothered to do.

After the University, we continued on our way to the pharmacy. As we crossed 16th Avenue, I pointed out Foothills Hospital to Charlotte, telling her that was where I went when I got sick. She asked why I got sick so much, and I told her it was ALS that caused it. She said "Grandpa, I'm sorry you got this disease."

KenRon was uneventful. Our next intended stop was the Banff Trail C-Train station. We rolled along the 16th Avenue sidewalk, crossing the Crowchild overpass. It was there we discovered that the sidewalk turned into a lane separator with the only exit method being a set of stairs. We had to go back. Neither Charlotte nor I were impressed with this blockade.

We made a rather large detour though the parking lot of McMahon Stadium, home to the Calgary Stampeders. Charlotte noticed and commented on how long the detour was, and how easy it was if we could just go up the stairs. I agreed with her. Eventually we made our way to the ramp and crossed the overpass to the C-Train station. I had to warn her that not all the train cars had wheelchair access and we might have to miss a train if we couldn't get to the door on time. Fortunately the train was one of the new ones, with wheelchair access at every door. Charlotte noticed.

Our next stop was the Liquor Depot in Brentwood. This was an uneventful stop, even fun. The elevator at the train station was working. The wait wasn't all that long. The roll over to the store had only a couple of sidewalk interruptions. We navigated. It was in the store where Charlotte started to help once again. I cannot carry that many things, so Charlotte became the puller of the cart, a task she reveled in.

We did our shopping and headed off to Walmart, another uneventful trip down relatively smooth sidewalks. For one part we went right down the middle of the road because of the bumps on the sidewalk; this was a cul-de-sac, so there was no traffic to bother us. We eventually arrived at Walmart, where Charlotte helped me pick out some rather colourful new underwear and a black pair of soft lounge pants. We rolled our way through the mall, heading home.

Our next stop was at a local park where she spent the better part of an hour swinging, climbing, jumping, running... all the things a six and a half year old would love to do. I rested. I needed a rest. Charlotte found a couple of friends her own age whose mother was right beside me. They had a dog. She played with her new friends, and with their dog. When the time came to go home, she jumped back up on my lap without complaint. We headed off.

The last segment of the trip was uneventful, except for Charlotte's complaint about being hungy. It was then I realized that Charlotte and I had been rolling about for five hours. Were I a healthy man, I might have not taken her at all. Instead I would have hopped into my truck, completing the round of errands in perhaps an hour, perhaps less. Had I taken her, she certainly would have stayed in the truck for at least a couple of the stops. Were it not for the wheelchair, Charlotte would not have noticed what she noticed, seen what she got to see, or played for an hour in that park.

Being in a wheelchair forces me to slow down. When it comes to having a small grandchild, this is probably a good thing. You don't have to have ALS to do this. Were it not for having ALS, I likely would not have done this. I am not sure what Charlotte would have noticed about that.

Tuesday, 15 August 2017

Worn Out Arms

Today it's my right arm. It's sore, from my bicep down to my fingers. My left fingers are feeling a bit stiff as well. I wonder if it is from cooking and cleaning yesterday. I did spend most of my day making Cannabis Butter so I could make cookies.There was also the pasta sauce, which required chopping, cutting, and can opening.

The things that wear me out often have their greatest effect on the day after. In some ways this is completely normal. If you spend a sold day working hard on a project, the next day you really feel it. Your muscles stiffen up, your joints ache; of course this only happens if you are over 30 and don't do heavy work on a daiy basis.

I do no heavy work. I do almost no light work. I do almost no work at all. Yet the stress and strain of working my remaining muscles has the same impact on me as it might on you. The only difference is that seemingly easy assignments are difficult. Even light duty tasks seem heavy duty. It takes me four times as long to do the simple things that healthy people do in a moment, with almost no effort.

At least today, and for a couple more days, Meaghan, Lewis, Charlotte, and Orson are both here to help me, as well as here to entertain me. Looking around my Lego strewn table, I realize her success in assembling her newest kit is my success too. I got her the Lego set. Every time Orson's little feet patter across the apartment in a race from room to room, I realize he is comfortable here, comfortable enough relax and have fun without escaping into Paw Patrol on Nextflix.

Meaghan wants a day where she does nothing, or as little as possble. That works for me. Charlotte and I will go out on my Power Wheelchair for a long ride. Charlotte will sit on my lap, reserving her energy for really important stops, like the playground. By the time we get home, Meaghan and Lewis may have partly recovered. They still have Orson to watch, and he alone can be a handful. Kids. They wear out your arms when they are small.

Monday, 14 August 2017

Monday Morning, Up Like A Lark

I'm feeling pretty good today. Once again I must remind people that this does not mean I am not tired. I am always tired, always ready to take a nap, stop for a rest, close my eyes. Feeling pretty good means I have some energy, a willingness to do something, a desire to be out and about.

It's almost impossible for me to not feel good on a Monday. This is the day Kathy, my HCA, comes in to clean my apartment, help me with a shower, gets me dressed, and provides me with a terrific brunch. Today it was a couple of my favourite sandwiches. I'll be adding a few fruit chunks to the plate after I finish these giants Kathy made for me.

What really works in this process is how much she does for me, allowing me to conserve my energy, meaning I don't start my day exhausted and ready to go back to bed. First of all, she let's me sleep while she cleans up. Even if I don't actually sleep, and I often do, I can get rest, preparing myself for the challenge of getting out of bed. The toilet and shower part I still do on my own, something I am grateful for. It means I can still take care of myself, at least in part.

Then there is dressing. I no longer choose, nor put on, my own clothes. It doesn't mean I cannot choose. It means Kathy and the other HCA's will lay out my clothing while I am in the bathroom. Then they will dress me. They put on my compression socks. They put on my underwear. They put on my pants. They put on my shirt. I just lay there like a lump and let them do their stuff. It means that even in the process of getting dressed, I am not exerting what precious energy I have.

Not having to make breakfast is another big deal. If I make food, I tend not to eat it. The energy used in make breakfast is enough of a loss that eating is too much effort. With the food made for me, I am more able to eat, more able to enjoy a good breakfast.

Then there is the best reason of all why this is such a good day. Meaghan, Lewis, and  the kids went down to Coaldale yesterday to see Lewis' parents. They are coming back today and have decided to stay for a few more days. So how could this be anything but a good day.

Sunday, 13 August 2017

LIfe In Grey

I'm struggling today. It may have something to do with me staying up late last night, watching TV and drinking. Or it may just be that I am having one of those days. Perhaps it is related to going two full days without peeing on myself only to collapse into complete failure when we got home from Drumheller yesterday. My catheter let go after I transferred out of the truck when we got home. Or, perhaps, it's just this God damned disease stealing as much as it can from me.

This is despite the wonderful reality of having my children and grandchildren visiting me. I am surrounded by the laughter, the funny behaviour, the smiles of little children. There are toys all over my apartment, with the exception of my room. Charlotte just said "Grandpa, I love you", as if through some psychic channel she understands my moments of struggle.

Meaghan and Lewis are heading down to Lethbridge today, to spend a day with his parents, giving them some precious grandchild time. Lewis' parents are fortunate. They have family close by, children and grandchildren within ready visiting distance. They are both working, his Mom as a teacher and his Dad engaged in farm real estate management. That means summer gives them some free time, time to be with the kids.

Maybe that's it. Maybe their imminent departure is what's got me down. I don't think so, especially since they are coming back here tomorrow night to spend the rest of the week with me. This is one of the longest, most pleasant visits I have had from one of my children in a very long time. So I have no reason to be sad on that account. In fact it's quite the reverse; they are doing everything they can to make me happy during their stay.

Except, of course, that none of us can escape the everpresent oppressive weight of ALS constantly on my shoulders. Even Charlotte senses it, commenting earlier today how she was sad that I was sick. I peed on myself yesterday; Lewis had to help me change my pants. Meaghan did my laundry for me, not because I couldn't do it, but simply because she wanted to help. She has seen how weak I have become.

It is wonderful to have them around. It is sad they have to see me this way. Maybe that's the real story, the reality behind my struggle today. Perhaps I am struggling because ALS paints everything in grey, the pictures of my life permanently tinged into darkness. Such a wonderful visit, punctuated by the reality of ALS. Yes, that is probably why I am struggling today.

Saturday, 12 August 2017

Quiet In The Front Seat

It's off to Drumheller today, off to the Royal Tyrell Museum, where the children will spend hours wandering amongst the bones and displays, where I will serve once again as a riding platform for Charlotte, where Orson will spend his afternoon roaring like a dinosaur. It's going to be quite the adventure, and we are ready for it.

Last night Lewis and I loaded my Power WheelChair into the back of the truck. We are taking it along so I am free of a pusher for the day, so that both Meaghan and Lewis are free to keep their eyes on free range children. Lewis had to learn how to drive the chair in order to get it downstairs. Then he had to learn how to load it into the truck bed; it's not a trivial task.

You have to drive the PWC up onto the ramp, then get off to maneuvre it up the rest of the ramp and into the truck. It must be at the correct angle to fit beneath the canopy, then you have to squat while maneuvring it the last couple of feet. All in all, it requires someone who is healthy enough to squat, strong enough to get up and down, and capable of judging the canopy height.

I'm heaving coffee now. It's early for me. Once I am done we will load the kids into the car and begin our adventure. Fortunately the kids are used to being loaded in and out of various vehicles. Unlike the other day where Orson cried "No train" during the C-Train trip to the zoo, he will be fine in the truck. It seems Orson has already developed a preference for private transit over public transit.

Charlotte will bring a book or some toys or her iPad. Likely she will bring them all, yet none of them will get used. The instant we leave the garage, Charlotte will begin to chatter, asking questions about everything she sees, everything she hears, everything which crosses her little mind. She will sing, make up songs, make up stories, ask us what this or that is. It will stop when we get out of the truck nearly 2 hours later.

Meaghan will sit in the back with the kids, patiently supervising. Perhaps she and Lewis will trade off at some point. Both of them are comfortable driving my truck, so if I get tired, they can easily take over. Since we have my PWC, I am unlike to wear out from the museum. Driving home, I might just let them take over regardless. I can always sleep, even in a truck with Orson burbling and Charlotte chattering and Meaghan managing. Lewis will be quiet. He is always quiet. Maybe he should drive. Quiet in the front seat, chatter in the back.

Friday, 11 August 2017

Doggy Day

I awoke this morning at about 9:00 AM to the rhythmic sound of thumping coming from somewhere within my apartment building. It was a muffled thump, somewhat irregular in occurrence. I shook off the shrouds of sleep populating my brain. Were the people across the hall hammering? No, it hadn't been sharp enough for that.

Then it started again. It was coming from my own apartment, most likely from the bedroom next to mine. I suddenly realized it was the sound of children jumping on a bed, the bed in my spare bedroom. I remembered, very quickly, that my grandchildren, my very active and lively grandchildren, were visiting me! I called for my daughter, who stuck her read into my room and apologized. I said "No worries. I'm awake now." Nonetheless, the thumping stopped.

Charlotte, aged 6 1/2, is the energy child, forever in motion, constantly chattering, singing, talking to herself. Orson, just over 2, is the accomplice child, either watching Paw Patrol on Netflix or engaged with his sister in some sort of mischief. Yet not a bit of it is bad. It's actually quite charming, once you get over the mess, the noise, and the constant activity.

I will not suggest they wore me out yesterday on our 6 hour excursion to the Calgary Zoo. No, they actually had me worn out before we left. The trip to the zoo was a respite, where they were outside, free ranging as long as they were within parental grasp or within shouting distance. Grandpa, it turned out, made the perfect riding vehicle for Charlotte. Orson is too attached to Mommy and Daddy to ride on Grandpa and his Power Wheelchair.

Today is a rest and recovery day. My HCA, Olga, came in, helped with my morning routine, then did my exercises. Charlotte sat in to watch what Olga was doing to Grandpa. Orson had gone to the store with Mommy to get milk. It seemed almost quiet, his his return when the volume when up and repeting the phrase "Doggy Day" constantly became to order of the moment.

Nobody, except possibly Orson, knows what "Doggy Day" means. That's fine. My children and grandchildren are visiting. All is well.

Thursday, 10 August 2017


I can barely function right now. I am struggling to wake up. Last night, Meaghan and I sat and had a few glasses of wine. We talked for several hours, clearing the air on some things, clouding it on other, reminiscinh and, unfortunately, talking about the future. It's not mt my favourite subject, the future. It's a sad discussion, clouded with uncertainty.

Anyway, but the tme we were done our very long evening of chatter, it was well plas 1:00 AM. Meaghan and Lewis announced their departure for bed. I followed suit. It took them  mattter of mnutes to te get settled. Me? It took my usual half hour or so. In that process I decided tot take a Zopiclne. I wanted to be sure that I got a good night of sleep.

Of course I was pushing things. These pills work for about 8 hours. Take a pill at 1:30 AM, sleep until 9:30 AM. Takke a pill at 2, sleep until 10. Sometimes they really hit hard. The sleep zone expands to as much as 10 - 12 houts. Last night I took the pill at 1:30 AM, with homecare coing at 9:00 AM. I pushed the envelope. That pushing has a price, my seeming inability to wake up today.

I've already fallen asleep in my wheelchair twice while writing this post. I am almost impossible to converse with; I can't keep a train of thought or form rational words. The easist thing on earth would be to go back to bed andstay there all day.

Except I have a house full of guests. We have to go to the petting zoo today. We have to make dinner tonight. We have visiting to do. I'm hoping this pill wears of soon. I'm not happy with this grogginess.

Wednesday, 9 August 2017

Bemoaning My Weakness

I hate the persistent, unsteadying shaking that goes on in my upper arms whenever I try to use them. It transcends the muscle weakness, causing continueal difficulties with almost everything I do. Of course the shaking is a sign of that self-same weakness. My muscles just can't provide endurance, notwithstanding any immediate show of strength.

It's like that in general for me. I may have a day where I am active. The following day, though, I pay for it. Yesterday I had Chris, Dianne and Anne over for Rack of Lamb. I got to be at around 11:00 PM. So today is a day of rest. I need this day to recover. Fortunately I have just that, an open day.

Tonight my daughter, Meaghan, arrives with her husband, Lewis, and her two children, Charlotte and Orson. Tomorrow, if all goes as planned, we will go to the Calgary Zoo. The next day, however, will have to be a day of rest for me. It's not like I wouldn't love to do something with them on Friday. I just know that the day at the zoo will wear me out; I will need to recover. If that goes well, then perhaps we will head up to Drumheller and the dinosaur museum on Saturday. They leave Sunday, which will give me another day of rest.

More and more it is becoming about what I can do, where my limitations are. It is about the weakness, about what I need to do to minimize it along with how I plan to recover from it. More and more I need to plan activities where I can get a break, things where resting, perhaps in the passenger seat, perhaps at a motel, perhaps just leaning back in my power wheelchair.

I truly am noticing the weakness increasingly each day. It is fast becoming the central issue in my life, the main feature of my physical limitations. I'm too weak to pick up things. I'm too weak to push my wheelchair over carpet. I'm too weak to sustain multiple days of activity. It's where I am these days.

Tuesday, 8 August 2017

Laundry Help

Yesterday I did laundry. That may not seem like much, yet it is a task becoming increasingly difficult for me. First there is the arranging of laudry in a basket. That basket cannot be on the floor, so I keep it perched up high on a different laundry hamper. That way I can slide it off the hamper and onto my lap. Once it's on my lap, I secure it around my waist using a bungee cord. That way both hands are free to push my wheelchair.

Next, I grab a couple of laundry pods and some vinegar from the kitchen. The laundry pods are obvious. The vinegar is to remove the smell of urine from my clothing. My goal is to get through each day without peeing on myself. This is not incontinence; it is the combined result of being 62 years old and peeing into a jug. Sometimes I get the get; sometimes I don't. Inevitably I have old man dribble at the end, thus adding continual wet spots to my pants. And of course there are those times where I get into the sling and lift myself up, only to have my bladder say "Now? Sure, now is good." Except it's not good. It's wet.

Somehow the hallway to my laundry room here in my condo seems to be getting longer and longer. It takes increasingly more effort to roll down that carpet, flat as it may be. Then there are the fire doors just before the laundry room. The sill is raised. There is a removeable ramp on either side. The whole process of opening the well-sprung door and getting myself over that sill is enough to make a lesser man give it all up. Just so you know, I will soon become a lesser man.

Yesterday I discovered something different; only slightly different. That's how ALS works. I found it "difficult" to lift the laundry out of the basket and into the washing machine. I've been finding it difficult to get the wet laundry out for some time. The getting it in part is new. It's a signal that I will soon need help with laundry too.

To those of you who think it would be nice to have someone do your laundry, remember what else comes along with this. That person who does my laundry is also the person who dresses me, who wipes my rear end now and again, and a whole host of other things you might find embarassing. Loss of strength, dependency on others, the inability to do for myself; this is ALS. Asking for help with the laundry; this is ALS too.

Monday, 7 August 2017

On The Seventh Day, I Rested

I'm back. Sunday was a rest day; it's almost Biblical. On the seventh day, I rested. Frankly, I exhausted myself thoroughly in getting ready for Ricky's visit. Then, while he was here, I stayed up late both nights, perhaps having a few more adult beverages than was wise, at least on Friday night. By Saturday night, when he left for the airport at 10:30 PM, I could barely hold my head up.

I went to bed pretty much as soon as he left. My bedtime routine with going pee, taking pills, slinging into bed, and getting undressed all takes about 20 to 30 minutes. Then I have to wind down, sometimes with chemical help, sometimes without. Last night I was asleep in about 30 minutes; no Zopiclone required. I slept solid until the next morning.

Olga arrived at 10:30 AM. I was awake already, having opened my eyes to the day at about 10:00 AM. Yet I was still tired, still exhausted from the previous few days activities. I asked her to help me get to the toilet, to dress me in part, and then to help me get back into bed. I went back to sleep immediately, not even hearing her close my apartment door as she left. There would be no blog, no breakfast, no chores, no TV, no books, no Internet; nothing but sleep for my day of rest.

I slept, throughout the day, into the night, right up until this morning when Kathy rang to get into the building. I am as rested as I can be, as rested as ALS will let me be. I am still tired, still carrying the costant weight on my eyelids from ALS. My mind, however, is awake, willing to function. I might actually get something done today. Laundry awaits, it's perpetuality persistent. There is fruit in the fridge to cut into a fruit plate. I might even go to Safeway to get some fresh vegetables for my grandchildren, but that might be pushing it a bit. I don't want to be exhausted again so soon.

Saturday, 5 August 2017

Energy For Visiting

Ricky is visiting today. I had so many ideas aboutehat I wanted to do, places I though we might go. Pehaps a drive up into the mountains, maybe head up to see my brother Jim, and my brother Peter, who happens to be visiting Jim this weekend. What about a nice luncch someplace with a view and decent beer? I knew Ricky would help me with some things around the apartment. There are things that needed to go to the storage locker, things that Ricky is taking back home with him. All of this, and more.

What if finally came down to, however, was my energy level. Each of my suggestions, once I said them out loud, became very quickly unrealistic. Things which I would have done at the drop of a hat in the past seem well out of reach these days thanks to my fading abilities. I simply cannot do a four hour drive on a whim anymore, let along the four hours back after visiting Edmonton. Five hours through the mountains would have been fun, except we stayed up late last night, having a few drinks, so that energy had already been expended.

I truly wish I had more energy, or could make better use of the energy I have. We ended up going to the mall across the road, having lunch and a beer, of which I drank half, then going to Safeway for a couple of steaks and some fruit. That, combined with a few minor things at home, did me in for the day, or at least for that part of it. I've finally started to wake up again, to feel some energy and ability. It's dinner time, so that will do it for me. After making dinner, I will need to relax once again.

This evening Ricky and I will sit around some more, not because he wants to but because I don't have the eneergy to keep going. He is making dinner; he's hungery now. I'm not really ready to eat, but those steaks smell good. After dinner, perhaps a few drinks. Friends will drop by to see Ricky. Then, at around 10:30 PM, he is off to the airport. I hope I can stay awake until then. It's the energy thing again.

Friday, 4 August 2017

Ikea Assembly

Yesterday I went to Ikea. I wanted to replace the table in my living room, the $9.99 Lack series corner table, the one that I ran over with my power wheelchair. While there, I puchased a night stand and small dresser for my spare bedroom. I am trying to get rid of clutter, so the desk and office chair which used to make my life a misery in that space are now gone completely. I have reduced the room to a bed, so I wanted something in there for my guests to use.

I like Ikea furniture. I like the price point, certainly. I am also a fan of their flat pack. The design and packaging efforts intriuge me no end, especially when I look at the item control and the visuality of the assembly instructions. I like to assemble things, as best I can these days. It stimulates my creativity and sense of constructing.

It's not that everything has to be Ikea. My bedroom, for example, is a constructed furniture set which had to be brought in by the company from whence it was purchased. The same with my leather couch and my dining room set. Some pieces are better assembled by the craftsperson, not by the purchaser. Some things are either too ornate or too complex for an ordinary person to put together. On the other hand, there is nothing like an easy, flat packed dresser for having fun with assembly.

Unfortunately these days the whole Ikea thing is getting tougher for me, especially when it comes to weight and assembly requiring some degree of strength. Sometimes you find it in the strangest of places. That Lack table, the one for $9.99, is a standby at Ikea. They probably sell more of that than any other furniture item. I would bet that every college student in the country has at least one. In order to assemble that table, you simply screw the legs on to the base of the table using the double ended thread bolts as provided.

The problem is the repetitive motion involved in threading things on, along with the final muscular effort of that last few threads. The repetitive motion wears my arms down very quickly. Those last couple of twists were almost beyond me. I ended up leaving that silly little table with only two legs attached, there for me to finish this morning. Even after a full night of sleep, the last two legs almost did ne in! The same is true for vaccuuming. After only a few minutes, my arms are so sore and tired I cannot continue. So I left that for today as well.

Fortunately my Home Care Aide for today was all about helping me finish the vaccuuming and making the beds. She even helped a bit with the Ikea table. I'm just not strong enough anymore to finish these things.

Thursday, 3 August 2017

A Catheter Kind Of Day

I'm not sure if you would call this a new low, or just a new experience. Today, for the first time, my HCA had to help me put on my condom catheter. She's not really supposed to do this; it's not in the care plan. But Sam is tremendously helpful, not one to stand on ceremony or get easily embarrased.

The challenge with the condom catheter is it attaches best when the penis is "a bit stiff", as I was told at the ALS clinic. So far, for me, that has meant watching some rather interesting video for a short period of time, then putting on the catheter. Today, however, I was in a hurry to get out for my appointment for new compression socks. So Sam just helped. Not a lot. In fact it was very awkward. Nonetheless, we got the catheter on, and I got out faster than if I had to do it on my own.

So cathetered up, I went off to the pharmacy for a compression stocking fitting. I am allowed three pair a year by Alberta Aids to Daily Living and AISH. If I want more than that, they cost around $75 a pair. So I hoard and save these socks as much as I can. The fitting was quick; I was out of there by 12:30 PM. So, booted and spurred, as it were, what was I to do? Costco and Ikea!

I need to replace the corner table I drove over with my power wheelchair. I wanted a night table for the spare room. I was also going to pick up some prunes for myself, and perhaps some salmon for when Ricky gets here tomorrow. Both of those are very well priced at Costco, and there is an Ikea just down the road from Costco, down in Southeast Calgary.

I hopped on the bus, and took the 90 ride from near Foothills Hospital in Calgary down to Deerfoot Meadows Mall. I did my shopping without event. Then I called a cab to get home. All this while, my catheter seems to be holding just fine. I, on the other hand, am exhausted, ready to fall asleep. I just wish Sam was here to help me take the damned thing off too.

Wednesday, 2 August 2017

Easy Brunch Treats

I love to cook. I've always enjoyed cooking, a trait my ex-wire did not take sufficient advantage of. The kitchen was her domain. She controlled the food, the cooking space, even the methods of cooking. So I mostly stayed away from the stress. When I did cook, it was usually with her permission, or even insistence, for our large family dinners. Most often this meant cooking a turkey or on occassion making some sort of multi-layered pasta and cheese dish, where I bought the cheese so it didn't come out of her household budget. Once again, I avoided the stress of fighting over food.

These days it is becoming increasingly difficult for me to make a decent meal. The work involved leaves me beyond just a little tired. Usually if I prepare a large meal, I'm too tired to eat. The funny thing is that small meals take just as much out of me as large meals. Things are getting increasingly difficult to lift. I drop things, which means taking a great amount of effort to pick them up. I spill things, so I have to tidy up more often, whether it is a large meal or a small meal.

One of the really sad things is how easy it is to make an interesting meal, without a lot of work. Even some of these are difficult for me now. Eggs Benedict is a good example. It has to be, hands down, one of the simplest brunch treats to prepare, if you know the tricks.

Basically, if you take an Egg McMuffin, take off the top bun, smother it with Hollandaise Sauce and serve it on a plate, you've got Eggs Benedict. The only difference is that McDonald's uses some crappy egg mix instead of poached eggs. But think of it. An English Muffin, toasted and buttered. Some Canadian Back Bacon, fried a bit to warm it through. A poached egg. Hollandiase sauce.

So what are the tricks? Well first of all, I poach my eggs in the microwave, using a third cup of water and a half teaspoon of vinegar. I poke the yolk with a toothpick so it doesn't explode, then nuke it for about a minute. Perfect poached egg every time. You can even do three or four at a time this way. Dead easy. Then, I use a mix for Hollandaise Sauce. I used to make my own, but this mix makes it a ton easier. On the other hand, you can make Hollandaise Sauce in a blender using melted butter and egg yolks. It's easy.

Those two things make it so simple to do Eggs Benedict for brunch, so easy that I teach my home care workers how to do it. It's beats the hell out of the montony of fried or scrambled eggs, the occasional omelette, or some other egg based concoction. I've also taught my HCA's how to make a simple crepe which can be filled with jam or brown sugar, and covered with maple syrup.

You see, cooking can be very simple if you know how. The problem for me these days is that even simple takes it out of me. I continue to remind myself of the rule of ALS. Nothing is easy. Nothing is fast. It all wears me out.

Tuesday, 1 August 2017

I'm Tired Of All This

I'm beginning to get a handle on this blasé phase I seem to be going through. I really have seen it all before. I'm feeling the pangs of loneliness more strongly, knowing full well this feeling will come and go. I am completely aware that the alone nature of my existence has a lot to do with ALS and lifestyle limitations.

Over the last few weeks I have been having a text conversation with a woman. She is in a wheelchair, however she is a paraplegic thanks to an accident in her younger years. She lives a full and complete life, has children, has her own home. In short, she has a lot in common with me when it comes to physical, and likely emotional, lifestyle.

In our discussions, in all discussions with anyone, I am quite direct. I don't really have a lot of time to beat around the bush, not with ALS chasing me as I do so. I get to the point as fast as I reasonably can, without seeming too blunt. So after a reasonable conversation time, I asked about sex. Quite reasonably, she declined on details but said she would only consider sex after marriage. It is a view I have heard before and understand completely.

Unfortunately for me, I don't have a lot of time and energy for marriage. I would get married, except whoever marries me would have to have a very good pre-nuptual agreement to avoid getting the debts I have built up on Visa and MasterCard. Then there is the money I own on strata fees. There's been a bit of delinquency in my last few years; I would hate to bring that into a marriage. Also, I just don't want to go through the hassle of getting married. It's all just too much for me.

You see, I've seen it before. Marriage, sex, children, work, life. There are lots of new expereinces out there for me, I know this. They just have to happen soon. How soon? That's the problem; I cannot define "soon". All I can say for sure is my life expectations are decidedly shorter term than most. My ability to handle stress is much lower than most. I am both emotionally and physically weakened by ALS. I know what all this looks like. I live it every day. It gets tiring after a while. Wake me up when it's over.

Monday, 31 July 2017

I Don't Want To Eat

I have really no idea what to write about today. Nothing has really happened to me. I mean, yesterday was mostly idle until a late visit from Anne, a visit which included several Old Fashioneds. I cooked a bit on Saturday, but most of that was done by Kate and Tonny. So I am in a bit of a creative slump, which is affecting both my writing and my cooking.

Actually that was one of the best things about Anne's visit last night, beside her dog Echo. When I realized she was coming over it motivated me to cook something before she got here, not for her so much but for me. So I did a pot of Pot Stickers, little Vietnamese dumplings. They're easy enough to make, since I buy them frozen. All I have to do is put some oil in a frying pan, then put enough water in to cover the bottoms of the dumplings. You heat it until the water boils away, which cooks the Pot Stickers. The oil remaining is well distributed through the pan, and you use that to brown them a bit. After they are done, I put on a bit of Oyster Sauce and Soy Sauce, and it's dinner time.

Today is much the same. I didn't feel like eating breakfast this morning, so I asked my Home Care Aide to skip breakfast. I snacked on grapes and had a cup of coffee. I promised her I would eat some cereal later on, but I failed in that commitment. I just didn't feel like eating, or more correctly, I didn't feel like making anything to eat, not even a bowl of cereal.

My appetite seems to have come back a little this evening. I'm hungry, but that is often not the real problem. The real problem is whether the effort and energy required to make a meal for myself is worth the food in front of me. I'm not starving; my waistline declares that in full measure. But I regularly fail to eat because of the effort involved.

There are a couple of Polish dogs in the pot. The buns are steaming atop the pot on a screen. It won't take all that much to make two hot dogs for myself. But instead, I am here, at the keyboard, evading that work in exchange for this work. I'm gonna have to go eat, even if I don't really want to.

Sunday, 30 July 2017

ALS Exhaustion Is Different

I am exhausted today, both physically and mentally. I'm not the kind of exhausted where I simply don't get out of bed. That is a different kind of exhausted. This kind is where I ache in my muscles, where I am constantly on the edge of sleeping, where I really want to just doze off yet I can't. I'm on the edge of rolling about asleep, but lack the coordination.

So why not just stay in bed? Actually I did, up until 3:00 PM. Mostly. I've decided recently that when I get a day like this, regardless of how tired I am when the Home Care Aide shows up, I am going to get up, use the toilet, and allow her to get me dressed, perhaps with the exception of a shirt. Most importantly I will have her put on my socks and a light pair of lounge pants, the ones that look like pajamas but sort of aren't. Then I will go back to bed, back to sleep and rest, until my mental state forces me to get active.

That's the thing about this particular kind of exhaustion. My brain recovers far more quickly than my body. Once I get up, I can feel my mind dissolving out of sleep, grasping onto reality. Yet my eyes have trouble focusing, my hands fail at coordination, my movements are slow, cumbersome. So I am awake in one sense while asleep in another. It's a very strange feeling. Coffee does not help.

How I get to feeling this way is completely unpredictable. I had a busy day yesterday, but I went to bed at about midnight, not unusual for me, and slept right up until Olga arrived at 10:00 AM. Admittedly she was a half hour early; that's not enough to drive this feeling. Maybe it was doing two things yesterday instead of one; I did the laundry, with help from Kate, and then folded and put it away. Maybe it was all the company, Tonny making me breakfast in the morning; Kate, Phil and the boys stopping by for dinner, mostly made by Kate.

I just don't know why I go through these days. It's not necessarily the wine; I had nothing yesterday. It's not necessarily the work; there are days when I do a lot and end up feeling energized by the accomplishments. It's not necessarily the sleep; yesterday I napped between Tonny's departure and Kate's arrival, a nap of some four hours.

All I know is this. The kind of exhaustion I feel, this disconnection of body and mind, this full body ache, is a part of having ALS. PALS everywhere talk about it, about the way it slows them down, about how much it affects their quality of life. I am no different. I\m tired, but not in a way that makes any sense to those without this illness.

Saturday, 29 July 2017

The Elephant

Tonny's just left, after another highly successful Saturday brunch. Last night Brad and Andrea came over; we cooked a terrific dinner, the three of us. Later today Kate will come by with Phil and the boys. We'll grill some steaks for us and make some hot dogs for the kids. The weekends are always a busy social time for me. I love it.

If you want to see what is good in my life, just look at the people around me. There is not a day goes by when I don't hear from someone, see someone, spend time with someone. While ALS puts me in a pretty lonely and frightened place, I have people around me who consistently lift me out of that space. Between Home Care Workers, friends, family, neighbours and others, I have an active social life. That's a big part of what keeps me going.

The biggest challenge I have is my self-centeredness, driven mostly by my lifestyle these days. When I was healthy, I had little need of this focus on self, although it has always been a part of my personality. With ALS, my focus has largely been on myself and my illness. This, in large part, is because there is nothing else in my life. I have no job. I have no partner. I have only limited outside activity. All I really have to talk about is ALS and my life.

When others come over, I have to work hard to focus on them, to ask them about their lives. As Andrea noted yesterday, when it comes to comparing and sharing, I win, hands down, for the worst story. But they all have stories too. Everyone around me has their own issues, struggles, needs. Everyone wants to share their stories too.

Listening is a hard learned skill for me. I have always struggled with my tendency to jump in, to interrupt, to speak before the other person has finished talking. It's even more difficult with ALS as the centre of all I am, of all I do. It's like carrying around an elephant, but trying not to say much about it. Everyone knows about the elephant; it's a highly visible problem. Yet they have their own "elephants"; maybe not as big, maybe not as visible, certainly not as life changing.

I am going to continue to work hard on listening, on watching for the other elephants, large and small, that others deal with. Just because I have ALS, I don't have a lock on difficulty, frustration, loneliness, fear. These things are in all of our lives. Mine is just a bit more visible, that's all.

Friday, 28 July 2017

Cannabis Details

This whole medical marijuana process is a lot more complicated than you might think. First there is the prescription process, enough of a hassle all on its own. Then there is the product selection process. The doctor doesn't do that at all. Instead you are left to choose your own product, or have an advisor assist you in choosing the correct product for your particular needs.

You see, cannabis is not just cannabis. There are so many different strains and varieties, with varying chemical compositions and varying strengths. The two main cannabinoids,delta-9-tetrahydrocannabinol and cannabidiol, also known as THC and CBD, do different things in your body, so growers breed strains of cannabis which provides all of one, all of another, or blends with some happy middle ground. For example, recreational uses want to get high, so they don't care about CBD. On the other hand, people suffering seizures don't want to get high, so the don't care about THC.

THC is the stuff that gets you high. It also has been shown to relieve nerve pain, like the kinds I have, as well as inducing sleep, something I need. Of course there is the classic stimulation of appetite we've all seen in the movies, but it has also been demonstrated to reduce nausea and generate an improved mood. On the downside, high levels of THC have been shown to produce paranoia, psychosis, difficulty with thinking and problem solving, and memory loss.

CBD is the more "medicinal" of the two main chemicals we seek from marijuana. It produces no high at all. It has been demonstrated to act as an anti-inflammatory and anti-anxiety drug. It's also shown efficacy as a muscle relaxant, reducing tremors and spasticity, as well as preventing seizures. It has been shown to counter and even eliminate the negative effects of THC. As of yet, there have been no real downsides noted with CBD.

With ALS, I suffer from substantial, relentless nerve pain. I have trouble getting to sleep, My appetite is irregular at best. Although I am generally a happy person, I suffer from some fairly severe mood swings. All of these are conditions aided by THC. I also struggle with anxiety, muscle spasms, tremors, and joint pain. All of these conditions are aided by CBD, which also reduces the instances of paranoia and other negatives of THC. In other words, I need a balanced hybrid.

The marijuana specialist recommended four strains of cannabis product, three of which are fairly balanced with THC and CBD. She went on to recommend one product high in THC and low in CBD, as a night time treatment, allowing me to sleep better and more comfortably.

So now I have product ideas. I have to go online to specific suppliers who have been given my prescription, thus they know the limits I can purchase legally. The thing you discover immediately is that medical marijuana is nowhere near as high in THC as the street level stuff. In addition you discover that it is more expensive than the street level stuff.

When you buy recreational marijuana off the street, you are buying an unknown product. Your local dealer does no testing for THC and CBD content, no quality control to ensure consistency in the product. A street dealer doesn't care if there are foreign elements in your weed; there usually are, ranging from mold to dirt to other drugs.

So I have been prescribed up to 120 grams a month across two registered suppliers. That means 60 from one and 60 from another. At an average price of about $8.00 a gram, my total allotment would price out at $960 a month. This is not covered by health insurance or AISH. So I suspect I will not be buying a lot of this stuff.

I am not sure what I will do yet. My thinking is to buy enough to make about 30 cannabis cookies. This amount will cost me the same as two good wine kits, ones that will make about 60 bottles of wine. It leaves me asking myself if one cookie is worth two bottles of wine. I don't know. All I know for sure is that today I will place an order for some amount, who knows what for sure, that I will struggle to afford. It is highly unlikely this will be an ongoing medical program, given the costs and difficulties.

But then again, perhaps this is what the government and the big pharmaceutical companies want.

Thursday, 27 July 2017

It's Not Funny Anymore

I got up today, out of bed. It's something I didn't do yesterday. Yesterday I stayed in bed right from morning until night, then took a Zopiclone and slept through until this morning. So I did not write yesterday.

My plan had been to write the saga of how I managed to get a heavy plastic bag of clothing stuck on the back of my power wheelchair, how I managed to get on the floor to cut it away, and how I slung myself back into my PWC. The point would be to demonstrate how difficult life could be with ALS and a wheelchiar, along with how creative I can be in solving problems.

When I awoke this morning I thought to myself how trite, perhaps even unrealistic, that story would be; a piece of hyperbole meant more to entertain than elucidate. Yes, it all happened. No, it would not be as funny as I would write it. Quite the reverse, pathos is more like it. My life with ALS is filled with emotions, all of which leave a very convincing argument about the difference and difficulty of living this pathetic life. It's not funny, no matter how hard I try to cast it that way. It's sad.

So I am in a wheelchair. So what? Thousands of people are in wheelchairs. So I am dying a slow, treacherous death, one inch at a time with miles to go before I reach my final sleep. So what? The whole world is marching down that path. My death is not ugly; in fact it will be a blessed relief. No, the only ugly thing is the manner of my death. It is the indignity of this departure which makes it pathetic. It's the way that ALS is forcing me to live that makes this tragic tale.

It's not always this way. Some days are good; some days are bad. The balance has shifted, as it inexorably must. My goals for each day have fallen away from travel, cooking, entertaining. My big goal now is to get through the day without peeing on myself, to get to sleep without tossing and turning for hours on end, to remember to take my pills, both morning and night. My goal is to get things done without the drama of bags getting stuck to my wheelchair. It's not funny anymore.

Tuesday, 25 July 2017

Medical Marijuana Adventure

Well. I\m back from another adventure, this time to the clinic where a specially certified doctor prescribed legal medical marijuana for me. I find it fascinating that any doctor in the country can prescribe powerful opiods, psychotropics which can generate suicidal thoughts, hypnotic and depressive sleeping aids that can put down a horse, but I need to go to a specially certified doctor to get a prescription of a naturally occurring plant. It speaks to the power of the pharmaceutical industry, and the hypocrisy of government in handling something as simple as cannabis.

Now, down to business. I need to start by saying that my arrival at the clinic engendered no squad cars or SWAT teams or CSIS spies lurking around the parking lot. There were no brightly lit signs with junkies shooting up underneath, nor dodgy people hanging about the door. It was a plain, simple, ordinary medical clinic, with patients coming in to get help with anything from a hangnail to, well, cannabis.

The doctor himself was terrific. He put me at ease almost the minute he entered the room. I did not feel like I was doing anything criminal, or even bad. He was very open about the process, the medication, the risks. He answered my every question, including questions about interactions with my other medications and a bunch of other miscellany. He listened to my story, making the appropriate compassionate sounds at the appropriate times. Then he wrote out a prescription for the largest legal dosage available on a monthly basis. He said it was the single largest amount he had ever prescribed. Apparently ALS is a pretty serious deal, what with the muscle loss, the fasiculations, the constant low grade pain, the tremors, the spasticity, the loss of emotional control, the depression... I think that about covers it.

The next step was the "cannabis education specialist". This was a nice young lady in the next room who seemed to have a lot of personal experience with the subject matter at hand. She was, I must say, very professional about the whole process, identifying which products would likely be best for me, how much I should order at a time when I went online; that's one of the interesting things, that the doctor prescribes a monthly amount but I order as much as I want up to that limit. It's not like other prescriptions, where they will pile the pills up as high as the hilltops, sending you home with months worth of your necessary drugs. No, this drug has to be prescribed by the physician, but ordered by the patient. It is worthy to note that the "Cannabis Education Specialist" also commented on the amount prescribed, saying it was the largest she had ever seen too. I believe the word "Wow" crept out of her mouth a couple of times.

After being completely educated, she suggested I ask for help from one of my more knowledgeable friends, or perhaps my children, about making cookies and getting the quantities correct. I think that ground is well covered. She then told me the bad news; my medical insurance will not cover this prescription medication. I would get a 20% discount as "compassionate pricing", but the same insurance company which would pay thousands of dollars for a chemical from a big pharmaceutical company will not pay for this naturally occurring plant.

So, the next thing will be an email from the suppliers asking me to register. I'll also get a medical marijuana card in the mail, allowing me to carry the stuff about if I wish. Except not across any international, or perhaps even provincial, borders. Then, I go online and spend my money. That's going to be the difficult part. The value of my monthly prescription, if fully filled, is about $600. I suspect I will go lightly on this path. As a side note, one of the recommended suppliers is a company owned by Snoop Dog, the famous rapper and pothead.

On the plus side, I have asked AISH if they will help pay for this. I suspect they won't. After all, if AISH started paying for my drugs, who knows what might happen. Oh. Wait. They already do. Except for this naturally occurring plant. The big pharmaceutical companies can't make any money off of it, so it must be illegal.

Monday, 24 July 2017

New Laptop

This is my first blog post from my new laptop. I managed to break the hinge and case of my old laptop while traveling in the UK. When I returned home, I took it to the Geek Squad at Best Buy and they shipped it off for repair. As it turns out, the repair cost was just about the same as the replacement cost, so they recommended I just get a new one with similar specifications.

So I did, for a grand total of $650. I will confess at this point that this is one of the lowest powered laptops I have ever purchased. Before now I always went for the newest in speed and power, and the lightest weight possible. This time I went for my budget, trying to keep the cost of this new machine in line with the cost of repairing the old one. As it happens, these two costs were exactly equal.

There are a couple of significant differences I will have to learn to deal with. First, this new laptop is ever so slightly smaller than my old laptop. It means tighter keyboard space and a screen that is just the tiniest bit smaller after the case covers the edges. The second thing, as a result of the first thing, is that this machine weighs a few ounces less than my old laptop. For me, this is a major plus, worth the slightly smaller screen and the slightly tighter keyboard.

I live online. I spend most of my waking hours on Facebook, doing email, browsing. I also use my laptop for watching Netflix. It is easier for me to sit in my wheelchair at the table and watch Netflix on my laptop than it is to set myself up in the living room and watch it on my TV. Plus, when I am in the living room, I have no place to rest my arms or put down a coffee when seated in my chair. So I tend to watch at the dining room table.

All these bits of data mean I need a lightweight computer that can do Internet browsing, video streaming, and blogging. I no longer need a monster; these days something barely average will do for me. And I can afford it, mostly.

Sunday, 23 July 2017

36 Hours Of Sleep

I'm out of bed, finally. I've been in bed since 11:00 PM on Friday. I stayed in bed literally all day yesterday, sleeping. Yesterday evening I sort of woke up, sort of. I didn't have the energy to get out of bed at all. Come 11:00 PM yesterday, after a full 24 hours sleeping on and off, I went back to sleep again.

It was about 8:00 AM when I finally awoke this morning. Even so, I was able to doze off and on until Home Care arrived at 10:30 AM. Sunday is one of my three sleep in days each week, where the Home Care Aide arrives at 10:30 AM instead of 9:00 AM. Even so, all three of my HCA's knows that coming late on the early days is not considered a bad thing. I am always ready to sleep in.

What I was not ready for was my exhaustion of yesterday. There is no explaining it. I've been getting decent nights of sleep lately. I've not been overdoing it in my days. I will admit to having had a bottle and a half of wine two nights running, not that this is an onerous thing for me. All in all, I'm fairly sure that my exhaustion has not been related to something I am doing.

There is the very real possibility that I am fighting another low grade bladder infection. This is how it goes when I'm in this situation. My body is even weaker than usual. I am more tired than usual. I've had little sign of the incontinence which goes with a bladder infection, so I have my doubts there too. I don't want to slap an antibiotic into my system as a preventative; it's another drug I don't need for something unclear in origin.

The best way, perhaps, to deal with something like this is to listen to my body, to rest as it needs rest, to eat as it needs sustenance, to stay hydrated. I'll try getting out for a bit today, to be a bit active. Then, if I am exhausted tomorrow again, I'll go see the doctor, even with the one week lead time for an appointment. Or maybe I'll just go to the hospital again. They can test and treat me right there.                                                      

Friday, 21 July 2017

It's My Birthday

I've waited, intentionally waited, before writing today. You see, today is my birthday. Today I turned 62 years old. Today was a day I never expected to see, never thought would arrive for me. When I was 57 and newly diagnosed with ALS, I would not have given a plug nickle for anything past 60, and not much more for 60 itself. The statistics said it. I had ALS. I had been symptomatic for at least two years. My life expectancy, at best, was 36 months. That's what the neurologist said.

The problem is that life expectancy is all about statistics. My statistic of one has not followed the pattern of the norm. My progression has been slower than expected, causing me to endure this disease for longer than expected. So this birthday is both a marker of an unexpected gift, and an unexpected curse. It seems I will, once again, outlive my money and my plans.

For some people, each and every birthday is something to celebrate. This celebration of birthdays is not something universal, however. Our modern celebrations have more to do with our wealthy society than with any real tradition of celebration. On top of that, a great many cultures celebrate the births of boys while mourning the births of girls. I am fortunate to have been born in a time and place where birthday celebrations happen.

If anyone should be congratulated for this day, it should be my Mom. She is the one who carried me for nine long months, the last two of them deep into the heat of summer. She is the one who delivered me in a hospital room populated by nuns who had never had a child telling her what to do, and a doctor who was really only there for the final event. Birth in the 1950's was fully medicalized, leaving no respect for the woman in charge of delivering herself a child.

I call my Mom on my birthday. I did that today. I thank her for going through those nine months, that tough delivery, and being there for the rest of my life right up until this day. If anyone has a right to be congratulated, it is her. If anyone should be celebrated it is her. All I did on this day was get hauled out of a warm, moist womb into a cold, sterile world, once there to be slapped such that my first utterance was a cry of pain.

So happy birthday to me. I shall celebrate quietly, with a glass of wine and a plate of pasta. I'm not a cake fan, perhaps I might have an ice cream bar. I will watch a movie or two. I will go to bed at an indecent hour. In other words, today will not be all that different than other days. I'll just have completed another orbit around the sun, as so many have done before me, as so many will do after me.

Thursday, 20 July 2017

Upside, Downside

Each morning I awake. From that instant on, my day is filled with ups and downs, both literally and figuratively. There's the sling. Both up and down. This morning there were no events with the sling, which leads me to believe that the last couple of mornings were events driven by my consumption of beer. Will this stop me from drinking beer? Not likely. What I will have to do is ensure I used the toilet before bed on those days when I drink beer.

There are lots of other upsides for each and every day. Here is the upside list. It's longer than what is presented. This blog has to have a certain brevity to it.


  1. I woke up today. I get to see another day of the world go by. I get to enjoy another glass of wine, another meal. I get to feel the sunshine, laugh at something, continue to hope for love.
  2. I got to use my sling without filling my underpants first. There was no mess today. No muss, no fuss. I was clean without needing a shower.
  3. Sam just folded my laundry. It is one less thing for me to do, so today I can focus on making spaghetti sauce with meatballs. I'll have that with rigatoni tonight, likely tomorrow night too.
There are plenty of other upsides. I just wanted to express a few of the good things that start my days. There are also downsides to every day, difficult things which enter my life, things over which I have no control.

  1. I woke up today. It means another day of dealing with pain and struggle. It means I get to witness more loss in my muscles, more challenges. The wine glass is getting heavier. It's getting more difficult to get outside in the sunshine. It's another day in which I will discover disappointment.
  2. My neck is cramping today, making it difficult to hold my head up straight. This would be less of an issue if I had stayed in bed, less of an issue if I simply laid flat for the day.
  3. It's cold outside today. I put shorts on this morning, or rather Sam put shorts on my this morning, thinking I would not be going outside. Now I will either stay indoors, or change to long pants.
You know, I can find both good and bad things in every day. Sometimes the good outweighs the bad. Sometimes the bad outweighs the good. What I know is this. One day I will realize that the downsides have been more than the upsides for a long time. That will be the day I decide. For now, not today. There's plenty of upsides.

Wednesday, 19 July 2017

A Messy Change

I look at changes in the way my body works very closely. I work hard to identify if they are are part of aging, a part of normal life, or a part of ALS. Sometimes it's a part of all three. The last couple of mornings, on transfer from bed to sling, my bowels seems to have felt the need for immediate release. There was nothing I could do to stop it, nothing I could hold. I didn't have the muscles needed. The sling squeezed and forced the necessary openings; stuff came out.

My first thought is beer. For both Monday evening and Tuesday afternoon, beer represented a reasonable portion of my non-dietary intake, Kilkenny Irish Ale on Monday and an Milestones Red Ale on Tuesday. Beer, especially draft beer, seems to make my tummy rumble. Perhaps it is time for me to switch from draft to bottled beer. Perhaps I need the pasteurization.

Then there is the dietary component. Both days consisted of irregular eating. On Monday it was wing night at the pub. Then, after a night out, I came home and ate a half sandwich Kathy had made me earlier in the day along with a small can of smoke oysters. Kathy said she though the oysters might be the culprit. Yesterday I went to a matinee at the movies with Tonny where I consumed a large bag of popcorn. Then I met friends at Milestones for beer. My dinner was ColeSlaw and canned Ravioli. Okay, not my best dietary efforts. Perhaps it was the popcorn.

The worst case scenario, from my perspective, is loss of muscle tone in my perineum. I still have sphincter control; that muscle is not affected by ALS. It's the other muscles "down there", gluteus muscles, abdominal muscles. Those are the ones I need to aid in both the process of holding in and of pushing out. When the sling spreads my cheeks, those muscles are no longer strong enough to come to the aid of the one muscle holding back the mudslide.

It's another thing I will have to learn, another change. My hope is that it is just the beer or food. My fear is that I may have to make another adjustment in my routine, going to the toilet at night as well as in the morning, or just going at night altogether. I wonder what the sling will have to say about that!

Tuesday, 18 July 2017

Tough Tuesdays

While Monday may be one of the best days of my week thanks to the ministrations of Kathy, my HCA, Tuesday is not typically a good start. First of all, on Monday's I get to sleep while Kathy cleans my apartment. I wake up to a nice, clean smelling home. Second, Kathy arrives at 10:30 AM on Monday, but arrives at 9:00 AM on Tuesday. This is a result of an experiment on my part which has become permanent. I wanted to try getting up earlier. Kathy was available and now I don't want to lose her by changing things.

So I live with tough Tuesdays. Today was tougher than most. Last night I went to bed late and slept poorly. I was off to a rough start right away. Then this morning my bowels decided that being in the sling was close enough to being over the toilet. I spoke to them harshly, using all the inappropriate language I could, reminding them that I was still wearing underwear. Alas, all to no avail. By the time I made it to the toilet, I was a shitty mess.

Once again, Kathy help rescue me from this mess, helping me get my underwear off, helping clean up the mess. My bidet spray helped a bunch, as did my shower; it was the clean up of underwear and commode chair where I needed some help. She takes these disasters completely in stride, a part of her daily work, without making me feel bad or helpless or anything like that. She often comes up with good reasons for why these bad things happen to me.

What make this Tuesday even more challenging is that Kathy is now off for two weeks, on holidays, headed to see her family in Edmonton, then in Radium. I have this deep and selfish worry about who will take over for her, who will fill in the gaps next Monday and Tuesday. On top of this, Olga is away this weekend, on vacation with her husband and children. So I have holiday fill ins for Friday, Saturday, Sunday, Monday and Tuesday. I wonder what I will eat!

Monday, 17 July 2017

Welcome To My Home

A number of people have asked, over time, if I could talk about the layout of my apartment, or perhaps do a video tour. I've done just that. The video today is about 8 minutes long and covers my whole apartment, from the dining table where the magic happens to the Door of Doom protecting the wine rack. I expect there will be questions about what is what. Feel free to ask away.

Welcome to my home.

Sunday, 16 July 2017

The Price of Pride

I am a fiercely independent man, especially since I left my wife. When that happened, I promised myself I would never again subjugate myself in trade for some falsely perceived benefit, nor agree or conciliate when I differed in position or attitude. I committed to being me, all the time. It was time for me to say what I thought, regardless of outcome; to be who I was, regardless of response.

Of course this attitude has its downside. I have, more than once, said things which set off a firestorm. My refusal to give up a female friend let to the breakdown of my last relationship. My willingness to express my attitude has most certainly upset more than one person. Yet I have found that those who like me, really like me; and those who aren't sure become certain in a hurry. It saves time, something that I don't have a lot of.

Yesterday is a good example of the price I pay for maintaining freedom. I declared that I would not ask for help, at least for a while. Asking for help puts the person asking at the will of the person giving; it creates a dependent subjugation. These days my emotions are fragile enough that I just don't want that in my life. If you offer, I will accept. If there is no offer, then I will have to decide how I can do it myself, or if I need to do it at all.

Costco. I went yesterday. By myself. I took the bus there, shopped, and called a wheelchair cab for a ride home using my Access Calgary Extra card. That card subsidises cab rides up to $56 a month as long as I pay the meter charge of $3.60. Yesterday the ride was $21.90; I paid $3.60, which is essentially bus fare, something I pay with any Access Calgary ride.

Getting there was fairly easy, just one transfer. Shopping had its challenges with lifting heavy things onto my lap and negotiating the crowds in my power wheelchair. Checkout was a breeze; the checked me out at the service counter thanks to my wheelchair. Getting home simply meant waiting for the cab. Once I was home, however, the real work began.

First, it was getting the boxes of groceries up to my apartment. I managed it, barely, in one trip. It took some doing to balance two large boxes on my lap, holding them with my left arm as I drove with my right hand. I made it, thankfully, with no loss of contents. Unfortunately I missed one of the turns just a bit, tearing off my side pack in the process. It's another thing to fix; I need a sewing machine. I am fairly sure my HCA can help with this, or the ALS Society. It will happen.

Putting the groceries away was the real challenge. Having taken them down from the shelves or out of the bins at Costco, I now had to put them high up on shelves or into the freezer here at home. I didn't realize how much it exhausted me until I slept in today. I ended up with 16 hours of sleep!

I need to be aware of my "one thing per day" rule. Doing laundry is one thing. Folding and putting away is another. Going to Costco is one thing. Putting stuff away is another. The freezer stuff has to go away, but most of the rest could have waited until today when I had help from an HCA. I wore myself out, needlessly. Help was on the way, if I had bothered to wait.

Today I am doing laundry. I am committed to not folding it tonight. I know Kathy will do that tomorrow. In fact she would do the laundry too, if I asked. I just don't want to ask anymore. The price for that is this. Exhaustion. Everything has its price, even my pride and independence.

Saturday, 15 July 2017

Need And Sorrow

I have decided not to ask anyone for help for anything, for a while. I just feel like I am constantly asking for help, begging for support, needing, needing, needing. If I want to get in the truck, I need help. If I want to do something on the BBQ, I need help. I ask for help with my laundry. I ask my guests to help in the kitchen, to cook, to clean. I ask my friends to take me places, to pick up things, to help with repairs in my home. I ask. I ask. I ask. I get turned down, or I feel like people are helping out of some sense of obligation, some sense of pity.

It is the most difficult thing with this disease, this constant need for more and more help. I no longer dress myself. I no longer clean my own home. I no longer visit friends in their homes. Everything revolves around my inability, my need for concession, my need for help.

Each day is a bit of grieving for a loss, sometimes a big one, sometimes a small one. This grief, this sadness, never goes away. This is not depression; it is sorrow. As the song says "I feel like a part of me is dyin'." Except this is no song, this is my everyday reality. A part of me actually is dying. With each of these small deaths, I need more help. I become more needy; physically, emotionally, financially.

What have I become? What kind of man am in now, afraid of so much, asking for so much? My image of myself has become so lost in this cruel reality, my mind and spirit detached from my failing body. I am not depressed right now, not over this. I am just sad at what I have turned into. I look in the mirror, seeing someone I don't know, someone I don't recognize. I don't know that person, not at all.

So, for a while, I am simply going to throw my needs into ether, asking nobody, expecting nothing, waiting for nothing. I will do what I can. What I cannot do, I will find other ways of doing, other approaches to living, other ideas to get what I want. This is as good as it gets these days. Until something else is taken from me. Then, I will need even more. Then I will be sad again, lonely again, afraid again. And I will have to start all over, again.

Friday, 14 July 2017

Truck Service

I'm just back from taking my truck in for servicing. The morning was so tightly scheduled that I didn't even have time for coffee, but I am enjoying one now. I am, however, exhausted from the effort of getting in and out of the truck, twice. Driving was, as usual, a pleasure, a relaxation. I love my truck. I love driving it. I love having it. When I lose it, that will be a sad day for me. I may keep it longer, much longer, than I can drive just so others can drive me somewhere in it.

To say that "I" took my truck in for servicing is a bit of a misrepresentation. While I drove and paid, I could not have done it without the help of my friend, Ryan. As usual, getting in and out was the real problem today. I am no longer strong enough to even position myself properly in my seat. I can't move my hips against the friction of the lift seat or chair cushion. It's a function of the loss in my upper arms and shoulders. I need help.

I paid very close attention to the effect of my driving, my ability to control the truck, the level of exhaustion in my lower arms and hands, as well as my upper arms and shoulders. I noticed a few interesting things. First of all, since I did not get square into the seat, I was at a bit of a twist for the whole of the drive. I didn't bother saying anything to Ryan; the drive was all of 20 minutes. I can take it.

What was more interesting to note was that I was almost unable to maintain that twist, my core muscles weak enough that I had to relax back to a somewhat offset driving position. At first it was annoying, but I got used to it. Were I on a longer trip, I would have asked Ryan to help me square up in the seat.

It was also interesting to note the increase in my slouch vis a vis the seat of the car. Once again my core muscles are failing at their task. Fortunately the truck seat takes away most of that problem; my truck seats are the most comfortable vehicle seat I have ever had.

Then there is the aftermath. I can feel it in my arms. My hands are a bit shaky; I am not sure if that is the driving or the Starbucks coffee. I am tired; then again I am almost always tired, especially at this time of day.

All in all, I would call it a success. It has been a month since I last drove my truck. With assistance getting in, I was able to safely drive through city traffic without incident. I wonder how long I can keep going?

Thursday, 13 July 2017

Post Clinic Depression

It's official. I am living with a nasty, ugly, debilitating, destructive, cruel illness. I have ALS. That was confirmed, once again, yesterday at the ALS Clinic down in the South Health Campus here in Calgary. I'm not really sure why I go to the clinic anymore. Pretty much everything they tell me is something I already know. The only real outcome is adjustments to medications, something which could just as easily happen in the office of any family doctor.

There was a medication adjustment yesterday. I take something called Efexor, also known as Venlafaxine. This drug is actually an anti-depressant, however it is also very effective in handling some of the more visible symptoms of Frontal Temporal Dysfunction. This is the part of the disease which leads to uncontrolled emotional outbursts; for me that was uncontrollable crying. It also helps with impulse control, not normally a good area for me regardless.

The increase this time had nothing to do with FTD. These days I am struggling with good old fashioned depression, situational though it may be. So for the first time we have increased my dosage of Efexor to a level suitable for treating depression. Prior to now I was on what might typically be considered somewhat below a half dosage. The typical dosage for this anti-depressant is between 250 and 300 mg per day. My dosage is 112.5 mg per day, and that's after increasing it due to a behavioural incident last year. We are moving it to 150 mg for a couple of weeks to get me used to the increase, and then to 187.5 mg after that. This is still a fairly modest dosage. I hope it will help with the worst of the depression, however not living with ALS would be better.

My weight was another focus in the clinic yesterday. After my complaints about diminishing arm and leg muscle mass, the folks at the clinic wanted to ensure I was eating well and maintaining my weight. I am, and I am. My weight has been constant for a couple of years now, other than a scare last January were I was down a bunch. I have it back now. Unfortunately the weight I have is all round my belly, not in my arms and legs. My appendages continue to shrink; my belly continues to grow. My weight remains constant, or at least nearly so.

Yet another focus was my respiration and lung volume capacity. As it has over time, my lung volume continues to diminish very slowly. When diagnosed, I had 85% of normal lung capacity. This is now down to 79%, not much of a decline after the initial slide. The more significant issue is increasing weakness in my diaphragm and general respiratory system. I run out of breath more easily these days.

In discussion with the respirologist, I suggested that after I lose my arms, I might succumb to Bulbar ALS. She said she didn't think so. I asked what it might be that would finish me off, if not that. She said I was more likely to die from respiratory failure. She didn't express a timeline, but I am failing in that regard so it will come eventually. I am not sure I want to wait it out. We'll have to see how it looks when I get there.

The final conversation of the day revolved around my truck. I was telling the neurologist how I was thinking about selling my truck, since I cannot get into it, and buying a van that I could get into. He suggested that the logistics of selling the truck to buy a van might be a lot of work from which I wouldn't get a lot of benefit. His intimation was that I would not be driving for as long as I thought. I'm not surprised. My shoulders and upper arms are just about done. My fingers and lower arms will stay with me for a while, but I need upper body strength to drive that truck.

The conclusion on the truck was that I not sell it, that I keep it and ask friends to help me get in and out. When I am completely unable to drive, then I should simply sell it and accept that new reality. Either that or make my last drive through the Rockies and miss a turn along the way.

There is nothing in all of this that I did not know. There are no surprises here. As my neurologist said to me a couple of years back, "If you think it is happening to you, it probably is."

Wednesday, 12 July 2017

Access Calgary

I've got about five or ten minutes to write. Then I have to go pee and get ready to go to the ALS Clnic. This entails putting shoes on, changing over to my PWC, then going outside at 12:20 at which point I will wait for up to 20 minutes for the Access Calgary bus to arrive. I find it frustrating that I am compelled to give them a 20 minute pickup window, but I am told if I am not out there by 12:20 and the bus should arrive, it will not wait for me. As well I will in some other fashion be penalized.

Sure, there are lots of reason which might impact their arrival time. There are potentially other passengers, some of whom might be difficult. After all, it is a service for handicapped people. There is also traffic to consider, especially since the Access Calgary service is point to point; you can't calculate traffic without a consistent route. So I understand they might need a bit of flexibility. But why not me? Perhaps I mean to get downstairs at 12:20 but I have to go pee at the last minute. Perhaps the elevator is busy, or jammed, or whatever. Perhaps I have trouble with my shoes.

Of course the theory is that I can plan for all of these things, allowing extra preparation time so I can be ready when they finally arrive. But if you know anything about ALS, you know that my body just doesn't work that well. On the other hand, none of the other passengers on this share service have well functioning bodies either. It is, after all, a handicapped service.

So why am I not taking my truck? The simple truth is that I have nobody to go with me to the clinic today, and I can no longer get in and out of my truck without help. If there was somebody here, Access Calgary would not be needed. But I live alone. I am independent, sort of. And that means finding different ways to do things when I need help.

Oops. It's 12:02. Gotta go.

Tuesday, 11 July 2017


It's raining outside.

I've got nothing to say.

I've got nothing to do.

I don't even know why I am still here. I should have left long ago.

I think I will go back to bed.

Monday, 10 July 2017

Continuing Exhaustion

I'm tired, lethargic. I continue to struggle with exhaustion, my body demanding sleep while all the while do little but sit in my wheelchair. I want to do something, but I don't know what to do. My fingers are tired. My hands are tired. My arms are tired. I can barely lift them.

Maybe that's it. Maybe the weakness in my arms and body is at the point where even small moves require large amounts of energy. I know that typing wears out my hands fairly quickly, as does holding on to my cell phone, whether talking or texting. I certainly can't carry anything for any distance without putting on my lap or into a bag.

I forget sometimes that the power of this disease is often hidden in plain sight. If my muscles are weak, it takes more to get even the simplest things done. That extra work makes me tired, just like it would make anyone else tired. I am no different that anyone else. If I work hard, I get tired. The problem is that the activities of daily living are becoming increasingly difficult.

I want to try to get outside today, in my power wheelchair, if only to get some fresh air and a sense of escape from my apartment. That might actually perk me up, fresh air and the ease of using my power chair. I have to do something. Sitting here, falling asleep, having done nothing today; I see that as the worst possible outcome.

Sunday, 9 July 2017

Sleeping All Day

It's hard to believe it's 6:00 PM and I am finally at a place where I feel like I can write. Of course the fact that I stayed in bed until 4:00 PM might have something to do with it. It was that kind of day today, where I needed rest, lots of rest, where I told my HCA to leave me in bed to sleep rather than getting me up at 10:30 AM. Even still, I feel somewhat tired and weary. It's just one of those days.

These kinds of rest days usually happen once or twice a week. Often they can be easily linked to some activity in my life. For example, yesterday I had company over for dinner. When they all left at 10:00 PM, I grabbed another beer and watched something on Netflix. By the time I finished that beer, tidied up the last few things, and was ready for bed, it was 12:30 AM. Add 12 hours to that, and I would sleep until well past noon today.

There are days, however, where there is no reason for my need for rest, or at least none that I can identify right away. Some days my body just craps out, fails to get motional, and all I can think of is sleep. I am not really sure why days like this happen, they just do.

Then there is the combo plate, a bit from column A and a bit from column B. That's what today was really all about. Yesterday I struggled. I was tired yesterday for no apparent reason. I've been sleeping well this week, recovered from any jet lag as far as I can tell. I've not been terribly busy; mostly just regular daily living, laundry and such. Still, I got out of bed yesterday because I had company coming. I needed a few more groceries, some adult beverages, and a few other odds and ends. Shopping was in order. Then came preparation, although Brad came and did most of that.

So with having company over and having been only modestly busy yesterday, I would expect to need a bit of extra sleep. It was the carry over of general fatigue that really hit today, along with needing a bit more sleep. Even now I could readily go back to bed. The problem is, if I sleep all day, will I sleep at night? Does it really matter? I'm not sure. I just know I am still tired, despite sleeping until dinner time.