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.