Friday, 29 June 2018

Benadryl Nights

It would seem I have developed an allergy to latex, the stuff in most paints. Or perhaps it's an allergy to the other chemicals that show up when paint is gassing off as it dries. Much like ALS, this is all new ground for me. I've never suffered from this kind of "environmental" allergy. The truth is that I've always kind of brushed this kind of thing off when other people said they had it. Now, in exquisite irony, it's my turn.

I've always felt that these kind of environmental allergies represented something wrong within your body, a body not strong enough to fight off the effects of exposure to chemical gases or other airborne pollutants. If you got sick with any kind of allergies, you just weren't strong enough to take it. I still think that's kind of true, only now it applies to me.

This allergy is new, brand new. I'm almost certain it arises out of a combination of reaction to all the medications I'm taking these days, along with a compromised immune systems. The observation certainly fits the case, my case. ALS has come along with another sideways kind of thing, something nobody warns you about. Here I am worried about a cold virus, and something that's been easy for me to deal with in the past has now become impossible.

The hives were terrible, sufficiently so that my evening caregiver felt I should call an ambulance. The burning and itching on my skin were maddening. I couldn't reach the areas I wanted to scratch. There was no fever, no other physical irregularities. So we, the EMS technicians, the doctor they called on the phone, and my HCA all said to take Benadryl. My HCA even took some money to go to Safeway and get a package.

I took a couple last night at 10:00 PM. I took a couple more at 5:00 AM. I took a couple more at 10:00 AM. It was enough to make me punch drunk and sleepy all day. Those effects have  just started wearing off. This is my first lucid moment all day. I'm going to eat something; all I've had today is a couple of pieces of buttered toast. Tonight, when I go to bed, I'm going to take a couple more Benadryl. The itching on my lower back has returned, and the antihistamine really takes it on. I'm hoping to sleep well, with no accidents or interruptions. That's be helpful.

Tomorrow, when someone comes to sand and paint the kitchen door frame, I think it might be wise for me to disappear for a while, perhaps an hour or three. A movie might be a good idea. Then a couple more Benadryl tomorrow night too.

Thursday, 28 June 2018

Another Busy Day

It was so busy yesterday I completely forgot about my blog! It can happen. Yesterday started with my normal Wednesday routine, which includes exercises. These days I find my Range of Motion exercises so exhausting that I need a couple hours of rest by the time my HCA leaves. So a 1:00 PM fnish with home care means I can't get active again until about 3:00 PM.

By the time I was functional, I had to get ready for David's arrival. He was coming to paint the doors and jambs, covering all the streaks and other marks I have made on them over the years. The door to the spare room is living proof that I am unable to navigate a 27 3/4" wheelchair through a 28" space, especially after a glass or two of wine. My room was not quite so bad; it's a 36" door. The same with the bathroom. Still, David repainted all three doors and jambs.

Andrea came over as well, doing a yeoman's job of filling in the many gouges and scrapes I've managed to make over the years. I'm dangerous with a power wheelchair. She found a lot of them, some I didn't even see myself. She filled them very nicely, so smoothly in some cases that I can't even tell where the paint ends and the fill begins.

The biggest job has yet to be done. I'm hoping Todd and Jessica can tackle it when they come over tonight. I've managed to completely smash the right side of the door frame going into the kitchen. the whole thing needs to be replaced. Yesterday Anne took down the existing frame and moulding. I have the new boards. They need to be cut to fit, installed, and painted. I'm hoping for tonight, but understand completely if it has to be split into two different jobs.

All in all, it was enough to make me forget about writing. Today, I have a bit more breathing room. So I am off to the mall to have coffee with a friend. Life is busy for me sometimes.

Tuesday, 26 June 2018

No Food Out

It seems to be becoming increasingly difficult for me to write a blog post in the morning. Most mornings I feel like I have nothing left to say, like I have said it all before, repeatedly. While new losses are all around me, it gets depressing for others to read time and time again how I am losing more and more abilities. I have to remember that this blog is about my journey, a journey which has a lot of difficult changes in it these days.

So here I go, talking about more losses. Today I asked Kabira, my afternoon and evening HCA to take some food out of the fridge for me so I could have it for dinner. Much of what is in the fridge is either too heavy for me to pick up or too far out of reach for me to get to from my wheelchair. If I want to eat, someone will have to get things out of the fridge for me.

The amount of leftover meat sauce, clam sauce and Alfredo Sauce is simply staggering. I've already put one container of meat sauce into the freezer. The Alfredo sauce and clam sauce were mixed together in one big plasticware container; I'll have to figure out what to do with it later. I know I can freeze it, but in what size portions? Tonight will be meat sauce.

I'm tired of spaghetti. I've been eating it for days. When I eat it, as much of it goes on my shirt as into my mouth. It's very difficult for me to swirl it up and shove it into my gob. So tonight I want to have Rotini with sauce. It's here that I made a strategic blunder. I did not ask Kabira to get the Rotini down for me from the upper cupboard where pasta makes its home. Instead I had to use a grabby stick to pull down almost every other package of pasta in order to get the one I want. The problem is that I cannot put any of it back up there!

Fortunately my friend Tonny will be here shortly. He is taking me to Lowe's where I can get the various supplies I need for fixing up the dings and bangs in my walls and doors before Shelby arrives next Sunday evening. I'll ask him to put the pasta back up, where it will happily reside until I disturb it all some other day. At least I'm going to eat tonight; last night I couldn't. No food out.

Monday, 25 June 2018

Energy Crisis

My body is so exhausted and weak today I can barely function, let alone keep my eyes open. I type ever so slowly, an activity at which I used to rather excel. My arms are too weak to pick up my mug of water, too weak to get my dinner out of my fridge, too weak to hold up a fork or spoon. Earlier today I was able to eat sandwiches, but after three halves, my mouth and jaw were too tired to chew while my arms had begun to fail in delivery.

I guess this disease really is killing me.

Only a week to go. It is my hope that my new live-in caregiver will make a dramatic difference in my life. I'm hoping that the activities of daily of life will be eased by a helper, by having someone who can pick up what I drop, put away that which I cannot, help me  when I need help.

The truth is that I don't need a lot of constant help. I am pretty good for most things once I get set up. I can do the TV stuff on my own. The only challenge with soing out is the doors, and there are people around often enough to help, although a companion might be better. In fact, while I have been beat all day, I have still gotten things done, like this blog.

Maybe it's the heat. Maybe it's the sleeping pill and a half from last night. Maybe I's still recovering from Saturday's party. There are lots of things that could make me feel this way. Sure, part of it is AL:S, but there are plenty of other things to go around. I just hope I have more energy tomorrow.

Sunday, 24 June 2018

Spaghetti Night

It was Spaghetti Night last night. Wow, was it ever Spaghetti Night! We had four kinds of sauce; a clam sauce, an Alfredo sauce, meatballs in tomato sauce, and a meat sauce loaded with lots of good stuff. We had spaghetti and fettucine, with rotini and penne on standby. There was garlic bread and a batch of coleslaw which didn't even make it out of the fridge. There was wine; of course there was wine. We had a few bottles of a delicious Pinot Grigio, and I capped the night with a glass of a fabulous merlot.

This was not all my doing. In fact the only part I really did was take some previously made meat sauce, put it in the slow cooker, add some tomatoes and mushrooms, then set it aside to bubble and get warm. Brad stepped in just about then and put together the coleslaw. I had run out of onions, so Brad made a quick run to Safeway too. He did the meatballs in sauce, cooking the meatballs then putting them in the warming tray and covering them with a simple tomato sauce.

Next up was Tonny. He continues to surprise me with his cooking knowledge and ability. I think he keeps quiet about it to avoid spending the whole evening in the kitchen. He failed last night. First up, he made a terrific clam sauce, generally using a recipe I found on line, while at the same time improvising as he went alone, like all great cooks do. Tonny also got trapped into making the pasta while the Alfredo Sauce was on the go.

It was Todd doing the Alfredo Sauce. I have two seperate recipes for Alfredo Sauce. One is a simple sauce, quick and easy to make, with only Parmesan Cheese. The other uses Cream Cheese, Parmesan Cheese, and Mozzarella Cheese. Needless to say, we made the richest, creamiest, most fattening choice. When I say "we", I really mean Todd. I was coaching from the sidelines.

It's interesting to notice that all the people making food last night were men. The women got to sit, talk, drink wine, and generally relax. We of the stronger sex hefted out bulk into the kitchen and made a wonderful dinner. I am compelled to ask, when does a cook become a chef? I must say there were some pretty inspiring dishes prepared last night, chef style cooking.

I've wanted to do a Spaghetti Night for a long time. I've wanted to have the luxury of multiple sauces, multiple types of pasta, and multiple things on the side. this obvious bounty of conspicuous consumption. It would be true to say I am a "foodie". The only thing is that these days I need help to create this kind of meal. I am so thankful there are friends who will do just that; help me feel like a good host, with wonderful food and wine.

Saturday, 23 June 2018

I'm Having Trouble Getting Started

Have you ever let something get in your way such that it stops you from even starting something you want to do? I have always been a bit like this. I might need a part before I can begin working on my boat. In fact almost all boat cleaning trips started with a stop at Canadian Tire, and more than likely a stop at the pub for lunch. And a beer.

It's becoming more problematic of late. I want to clear off my dining room table. There's nto actually a lot of clutter; just enough that it will get in the way of tonight's spaghetti party. It's funny. After writing that sentence, I stopped to clear a couple of pieces of scrap paper off the table. Then I dropped one and had to pick it up; no small task even with a grabby stick. Then I noticed how tired my arms were, so I got my lap desk instead of typing at the table.

As of yet, my table clearing efforts have been limited to those couple of pieces of paper scrap. I'll commit myself to doing more after I finish this blog, and take a bit of a rest. Even typing wears me down these days.

I really haven't changeed all that much. I have just become more of what I already was. They say this happens to most of us as we approach death. The imminence of the Grim Reaper does not suddenly change us into a better person. It simply amplifies the person we already are. Like me and letting things get in the way of starting what needs to be done.

Friday, 22 June 2018

No Arms For Organization

There are days, lots of days, when my internal monologue begins with "I don't know how much more of this I can take'. Then, often to my own distress and dismau, homecare gets me up, gets me dressed, puts me in my wheelchiar, and I take more of what I don't want to take; living with ALS.

Today it has been especially difficult. My arms, especially my left arm, have been very weak and unwilling. There is a lot of bone and muscle pain in my left arm. I was weak and uncomfortable enough that I told my HCA to skip my arm exercists and only do 3 and 3 on my legs instead of the normal 5 and 5 exercise rotation.

Just now I had to stop and take a 15 minute break from writing, so I could rest my arms.

This kind of a day wreaks all kinds of havoc on any plans I might have made. I wanted to organize my freezer a bit today, the same with my fridge. With various home care workers and friends taking things out and putting them back willy-nilly, I now have no idea what is in which. I run the risk of buying doubles because I don't know what I have. Or what's worse is that things go bad because I cannot see them in the back of my fridge.

I'm going to do the best I can today, but first I am going to the grocery store for a couple of things I need for my Spaghetti Party tomorrow. About a dozen or so of my friends are comng over. I will make various pastas and sauces. We'll play games afterwards. I'm hoping to get organized enough to make it all work.

Thursday, 21 June 2018

Google Home To The Rescue

Yesterday was a tough day, at least for the better part of it. I am beginning to feel that my Range Of Motion exercises are wearing me down, leaving me in bad shape for the rest of my day. I am going to change that in the near future, making the ROM exercises a part of my evening routine. That way I can get a good rest afterwards.

The better half of the day started when David showed up for dinner. We talked finances and vacations, along with life in general. I showed David a quick and easy way to do up some tasty fried chicken, and he made sure I go lots of food. Unfortunately he suffered from the malady I often display; he was tired after cooking the dinner so he didn't eat that much. Nonetheless, dinner was great, especially starting with a beer and topping things of with a few glasses of wine.

Wine. Therein lies the rest of my tale for last night and this morning. I will admit to having consumed a beer, and the better part of a bottle of Montepulciano. This, combined with the exhaustion still hanging on from the morning meant I was more than ready for bed. My HCA, Kabira, settled me in at which point I realized I didn't have my phone. I asked Kabira to bring it to me, after which she left. I was in bed.

Part of my evening ritual, once in bed, is to read the news on my phone and to check into Facebook before going to sleep. I remember reading the news. I don't remember anything after that. I must have fallen so soundly and solidly asleep that I didn't even know it was happening. I slept solidly and soundly until around 6:00 AM, when a pesky fly woke my up by buzzing all around my head. I was well awakened by all my efforts to kill that little bugger.

It was then that I notice my phone was not on my night table, attached to the charger as it usually is. I had absolutely no idea where it was. Without it, I would not be able to let Semhar, or Sam as I call her, in to do my morning routine. This all happened after about an hour of fly swatting and attempting to get back to sleep. At this point, Google Home came to the rescue. I said "Hey Google, call CBI". Google Home promptly made the call. I needed to respond to an IVR prompt, at which point I saids "Hey Google, press 1".

I was connected with the CBI Coordinator and left a message for Sam, letting her know that I did not have my phone and asking her to contact Moe, our building superintendent, to get into my building. That message complete, I tried to sleep again. Once again that pesky fly had me up and swinging. It was about a half our later that I realized I had something called "If This, Then That" or IFTTT installed on my phone, and thus on my Google Home.

IFTTT is a kind of scripting interface to allow multiple functons to be performed on Google Home, functions which are not innately on the device. One of these scripts is called "Find My Phone". So I said "Hey Google, find my phone", The command was promptly accepted, whereupon I heard my phone ringing and felt it vibrating under my left thigh. I guess I fell asleep with the phone in my hand and it fell beneath or beside me. Then, at night, as I rolled from back to side, the phone slid further and further underneath me. I grabbed the phone and texted Sam that all was well.

So, Google Home to the rescue, not once, but twice, all while I was laying on my back in bed!

Tuesday, 19 June 2018

Goverments And Health Care

It's been a very busy day, at least from my perspective. I've had to get paperwork ready for my new hire. We've been emailing back and forth about start dates and what her first week will look like. Emily was over to clean my oven today, after the disaster of last week. I've been on the phone with the various agencies involved in my Self-Managed Care process. I haven't even had time to get over to Safeway for flour and bleach; I'm out of both.

The one thing that bothers me is that I have to set up a payroll account with Canada Revenue Agency. What if someone figures out I am still alive, and have enough money to pay an employee. Will they come after me for the few thousand I own in back taxes? Is it worth their time? If there is one government agency which scares the hell out of me, it's Revenue Canada. They are heartless, unchanging, and even brutal at times.

Government is necessary. Taxes are necessary. Taxes and death are the only two things you cannot avoid in life. Government substantially benefits me at this point in my life, especially a liberal socialist democracy like Canada enjoys. It may not be cradle to grave care, and I certainly wouldn't call it a Nanny State, programs like national Health Care, Employment Insurance, the Canada Pension Plan and so many others make Canada a much safter place to live.

What's interesting is that those parties who rail against government spending and wasteful government programs barely touch them once in power. For all the bluff and dander, the goal of most Canadian political parties is to grab the vote of the radical center. Various parties have declared they would dismantle our national Health Care system. The best they could ever do is whittle away around the edges. Health care in Canada is sacred, even if it makes me fill in call kinds of documents. It is only through this system that I can afford to hire a live-in caregiver. How can you argue against that?

Monday, 18 June 2018

Meet Shelby, My New Live-In

Houston. We have a live-in. That's right, I am pleased to announce that I have hired a live-in caregiver. She starts on July 1. Shelby is from PEI, has trained as an HCA, and wants to come out west for a while. She's young, only 19, but this may be a real advantage. She comes with few complications, a willingness to do the job, and the enthusiasm of youth. It could be very good for me.

This, of course, will mean some changes, and some challenges, in my life. The biggest challenge will be the one I have feared all along, the financial challenge. We are skinning this cat close; I'll be running a deficit of only $14 a month. The real challenge will be in feeding a youngster on $300 a month. On top of that will be my own food costs and other expenditures. Having a live-in by no means offers any financial benefit to me; quite the opposite.

With that said, dismissing any other challenges is easy. This situation is definitely a win for me in so many ways, from flexibiity of care, consistency of care to increased activity and more "getting out". David is going to put Shelby on the van as an additional driver. That means I will have a driver during my days anytime I need one. It means I will have someone to help me get in and out of the doors downstairs, someone to help with laundry on a steady basis, another pupil for my cooking instructions.

For her, I admit right now the money is not great. On the other hand her work hours are very flexible and she will have no living costs beyond the $400 for room and board. There will certainly be more household costs, beyond food, Those are all in for her, things like electricity, laundry soap, toiletries, and all that. Then there will be the adventure. David and I are already planning a trip to Vancouver next month, and another trip later this summer. With Shelby along, those things become possible.

This is going to be a wonderful new chapter to my life with ALS. Things are looking up.

Sunday, 17 June 2018

The Pre-Roll

David took me to my niece's concert last night. Chelsea McBride's Socialist Night School; that's her. It was an exciting evening of interesting, eclectic music. Chelsea has always been that way, using music to express what she see's, presenting compositions which take different pathways, non-traditional jazz routes. Probably the most exciting part was watching Chelsea perform, and knowing her Mom was in the audience. Alas my brother, Matthew, is up north skippering a ship up and down the Mackenzie River. We are an unusual family, with unusual talents.

The sad part about last night was having to leave halfway through the show. Home Care waits for nobody; I had to be home by 9:45 PM at the latest. All right, my HCA did wait an extra 15 minutes. Between the timing of the intermission in Chelsea's performance and the drive home, we made it here at 9:30 PM, the normal timing for putting me to bed.

Sleeping was easy last night; I was exhausted after all the activity, along with a pre-bedtime glass of Scotch. At least it was easy until about 5:00 AM. That's when I woke up and realized my HCA had not positioned me to turn easily. In fact I could not roll on my side at all, the common state of affairs these days. Now, in order to make that movement, I have to be "pre-rolled" to ensure my hips are slanted enough that I don't actually roll as much as I complete the prior positioning. So, on a proper night, I am not really flat on my back, but positioned more in a 1/4 turn. From there, I can complete.

So, at about 6:00 AM, after trying any number of maneuvres on my own, I called the night nurse. Fortunately she was not all that busy, so she had time to come and help me reposition. It is my hope that all of this goes away once I have a live-in caregiver. I don't mean that I will wake her up at 5:00 AM. My hope is that, like my other evening HCA, she will learn the pre-roll as part of the routine, an important part, not to be forgotten.

Saturday, 16 June 2018

Tired Hands, Weak Eyes, Aging

I'm having trouble typing today. My fingers feel ever so slightly uncoordinated. My arms don't want to stay in place, wandering away towards my sides, making itd difficult to hit the center keys consistently. There's a lot be backspacing and correction going on here.

The magnify function in Chrome is on as well, showing this page at 125%. You see, my vision is worsening as I age, having nothing to do with ALS that I am aware of. As I have said in the past, having ALS does not give me any exemption from the illness of age and living in general. Methinks another visit to the optometrist is in order soon. He will demand bifocals. I will continue to resist, instead using the magnify function where it exists, be it Chrome, my TV or when reading a book online.

Part of this weakeness today is another damned infection. It seems the typical time between ending a course of antibiotics and the return of the infection is about five days. I will head into the doctor on Monday and start another course of medication. This time, however, I think I might ask for a longer term, lower grade antibiotic treatment. If I can't kill this infection, perhaps I can make a truce, like they did in the Korean War. I'll still be at war with the infection. It will still be trying to kill me. All I can do is hold it at bay, a foe unwilling to end the conflict on both sides.

Friday, 15 June 2018

Runaway Train

Beware of getting locked into a train of thought without considering other tracks. This happens often to me, where I get an idea, look for a specific outcome, then head down a set of tracks which completely misses other ways of doing things. Some call it tunnel vision.

With ALS, you simply cannot live that way. With ALS, just as with so much of life, the way you planned is not the way it's going to go. Often times, when faced with a challenge, I want to solve it my way, regardless of impact or issue. Then someone comes along, often David, who says "there is a simpler way to do this". Inevitably the simpler, or simplest, way is the best way.

The problem for me is that the simplest way generally includes an innate concession to this disease. I can't do it the way I want, because I am unable to do it the way I want. I can only do what ALS allows me to do. If I can't lift it, I have to ask someone to lift if for me. If I can't work the tools the way I want them to work, I either have to work them a different way or ask someone to work them my way.

The only problem is that I am often home along when I get an idea about a project or a problem. Take towels for example. My towel shelf is a mess, something I clearly attribute to my home care workers. I want it organized in a certain way, where all the towels come off the shelf and are then put back in the proper arrangement. I don't have the energy for that, nor do I see away through on my own.

So I have to wait until the right person comes along and says, "I'll do it, but this way might work better." Maybe I don't need my towels organized in a specific way. Maybe it's just as easy to leave them disorganized. After all, I don't pick them up any more. So if the HCA's are the ones who have to deal with them, it makes little sense to get tunnel vision when it comes to their organization.

There are lots of ways to do things. Some are better than others. The best ones are the ones where I don't have to expend the energy, where I can just let the train make its way down the tracks without me being in control. I don't have to manage everything, even though I really, really, really, really want to.

Thursday, 14 June 2018

What Will Tomorrow?

I am not sure how much more of this I can take, how much farther I can go. As much as I want to live, this disease is making that increasingly difficult. Even with the advent of a live-in caregiver, a situation we are on the cusp of resolving, life is becoming increasingly difficult for me. These days my breathing is becoming increasingly shallow; I run out of breath on a regular basis, finding myself lacking the expulsive power even to finish a sentence or tow.

Six months? A year? I'm not sure. My brain is so active these days with both the challenges and learning with respect to automation of my home as well as the philosophical elements which I am compelled to confront and contemplate daily. Time becomes irrelevant, near unimportant as I face the expected outcome. My life is nearing its end. Unfortunately I am interested in so many things, so much, that dying simply seems out of the question.

It almost seems unfair to ask a live-in to step into this kind of situation. How long will this job last? What emotional toll will it take to walk these months along side of me? There is no doubt that caring for me, or anyone in my position, will take an immense emotional toll. On the other hand, anyone stepping in now will have a clear view of the potential timeline and the expected pathway to the outcome. If they sign up for the job, they must accept these things.

So this has been my day today, wondering about these things. Tomorrow I will arise, to wonder again. Will I wonder about living and dying? Will I wonder about the emotional cost of caregiving? Or will I, with any luck at all, focus on the requirements and tasks of getting switches to work in my apartment, automated switches? Switches I think it will be. After all, at least I can do something about them.

Wednesday, 13 June 2018


My daughter Kate came down from Eckville today, a two hour drive, to bottle the wine for her wedding. We had a good visit too. The only downside was my realisation of how little of this I can really do now, how much of what used to be a great hobby of mine is now handed off to others. It frustrates me that I could do virtually nothing to help her, not even provide the odd instruction or two. She knows pretty much how to do it all.

The other distresssor was that she couldn't stay for dinner. Turns out she is the coach for her step-sons soccer team, the Unicorn-Dragons, a mixed gender team for 8 - 10 year olds. Given that she knows almost nothing about soccer, it's a good thing her husband is her assistant coach. I think it's terrific that she has jumped into the role of being a mother for her husband's three sons.

I love children. I love my own children, and their children. I love the children of my friends. In fact, that is one of the things I miss most of all, having my children and grandchildren visit me. I anticipate with anxiousness their pending arrival. I hate it when they have to go. I would like to spend more time with them whenever possible. I don't mean the intense "activity time" that inevitably happens when they come to visit from so far away. I mean that calmer time which can only happen when there is a degree of settlement upon them. It's not always calm, but it is wonderful.

If you have children, I encourage you to think about this. All day long in your hustle and bustle, your children are around you, if you are lucky, an appendage often digging into your ribs or pulling at your pocket. Yet when you finally get them to bed at night, you watch them in their sleeping innocence. This is the repayment for all your work, those few moments between their sleeping time and yours, when you can look at them unhurriedly, wonderingly.

Of course that wonder ends when they wake up in the middle of the night, coughing and hacking, and just have to crawl into bed with you. But then again, that's just part of the deal. There will come a day, one day, when it will be the last time you pick up your child, the last time your child crawls into bed with you, the last time you hold their hand. That is the saddest thing.

Tuesday, 12 June 2018

More Things Gone

This whole "losing my arm strength" thing is getting very annoying. Not only is almost everything too heavy for me to pick up, even something as small as a dozen eggs, but now my fingers have taken to locking up consistently whenever I extend them to reach, grab, or push something. It's like the knuckle joint on each finger actually inverts and locks during the process. Then I have to stop whatever it is I am doing, release the hand in question, or both hands sometimes, then shake them to loosen my fingers.

It's all kinds of things, though. For example, not only can I not roll over in bed, I can't even roll onto on side these days. This means when I am put to bed, I need to choose my position carefully as I will likely be there for at least 12 hours. I'm going to start asking my HCA's to put me on my side. I'll sleep that way for a few hours, then roll onto my back for the rest of the night.

Then there's my jackets and hoodies. I simply am not strong enough to pick them up over my head. I need someone to help me put them on. These days I take them with me and ask the first person I meet to help me, even if it's a stranger. Actually I ask strangers for a lot of help these days. I find people are almost always both willing and cheerful. They seem to innately understand the issue.

I've also discovered that I can no longer open some of my pill bottles, expecially the larger ones, which really aren't that large. The child-proof caps are also ALS-proof caps. I know I can get my medications in blister packs, although I don't know what that will cost. My current worry is whether or not I will be able to tear open the packaging.

And that's another thing... packaging. But this is enough complaining for today. I have a lot of reasons to dislike packaging, so more on that another day.

Monday, 11 June 2018

Automating My Life

In a process initiated by a gift from my friend, and another PALS, David Brown, followed on by encouragment and support from my friend Chris Gordon, I am on a project to automate as much of my apartment as I reasonably can given costs and available devices.

It was all started when David sent me some Bluetooth outlets to allow control of some of my plugs. While I was unable to implement the devices he sent, it really opened my eyes to what was possible. I realized that I could actuallly set up most of my lights to be switched on and off by voice command. So, as in days gone by, I called Chris and said "I have this idea..." Again, as in days of old, he said "That's a really neat idea. Here's some money. Go make it happen."

So I bought a couple of Google Home Mini listening devices. These devices are far more than just listening devices. The Google Home devices run something called the Google Assistant, so I can ask it things about every day life. I've already started keeping my shopping list there, a paper based task which has become both tiring and difficult for me. Plus I can, using voice commands only, switch on my TV, play music through my living room sound system or in my bedroom, and a bunch of other neat stuff.

The real power in this technology, however, is in the combined voice control or device control of things like outlets, light switches, dimmer switches, even heavy appliances like my air conditioner. There are also devices for major adaptations, like closing curtains blinds, locking and unlocking doors; there's even talk about Wi-Fi controlled bathroom fixtures.

Oh, I need to mention this. It's all run over my apartment Wi-Fi. I only need the Internet to reach the cloud stored information on things like outlet configuration or shopping lists or contact; that kind of content heavy stuff. Now, admittedly I am giving more information about my life to vendors like Google and TP-Link and others, but my life is soooooo boring that it means little to me. Plus, it allows vendors to send me truly useful information, like when I need to get butter or milk. The reminders, those are very helpful.

All in all, I am very excited by both this project, and the technology. I am learning, something that is always exciting to me. I am trying something fairly new, even cutting edge. While it may not be the bleeding edge, it certainly is the leading edge. That's something I have done my whole adult life, lead the front edge useful, implementable technologies. Now, thanks to a few friends, I am doing it again.

This is so cool!

Sunday, 10 June 2018

Horses Jump; Betty's Run

I didn't write yesterday. Instead I put my energy into having a terrific day with David, checking out the Grand National Horse Jumping competition at Spruce Meadows. It's interesting. Despite the way the name sounds, nobody there was jumping over horses. Instead the horses did all the jumping. No matter anyway. I went to look at all the lovely horses, something much for fun to me.

The most interesting part of the day had nothing to do with horses and jumping. There were any number of displays from local first responders; fire, ambulance, police. David and I had a terrific time checking out all the cool displays; we even met some of the guys who had taken me upstairs when the elevator was out! Alas, I could not get into the various vehicle displays, but David sure did, every one he could.

Today was much more challenging. It was the day of Betty's Run. First and foremost, I want to thank those who walked with me today, both in person and in spirit. Thank you to those of you who donated, and a special thanks to David for staying overnight here to get me to the walk on time. Without the support of friends and family, without your help, my life would be a true misery. It is the people around me that make me want to keep living.

I will say, however, that living this morning was brutally interrupted. Home Care arrived at 7:00 AM. That's only half way through my night! I still had three and a half hours left in my slumber period. It's brutal on my body to get up at that time of night, or morning, or whatever you call it. After eating some breakfast, David loaded me into the van and drove me out into the pouring rain. It did not portend well.

The rain was solid, from the moment we got there to the moment we left; early I might add. It was cold, wet, and grumpy. Oh, that was me. Nonetheless, somewhere less than half way round the first circuit the common consensus was to bail. We did, just in time. I was beginning to become nearly physically ill from the cold and wet. It would seem that sitting in a chair, wheel or otherwise, not moving, getting rained one, all of this makes for a very cold Richard. I very much appreciated the consensus, very much wanted to get warm and dry.

Friday, 8 June 2018

Bad Exercises

This is a tough post to write. Not emotionally, but physically. My hands and arms are very sore and weak today. I see this as a result of my morning range of motion exercises. I am at the point where it is difficult to do them myself, so I ask for help. With help, however, my existing muscles still demand participation whether I like it or not. So they get tire, really tired.

That severe exhaustion, combined with the milder exhaustion that goes with having my legs exercises, leaves me almost incapable of eating any sort of breakfast. This is made moderately worse by the type of breakfast I get from my Friday morning HCA, Yvonne.

Yvonne seems fully incapable of getting my morning routine done with any time left for breakfast. My day is supposed to be one hour for personal care, one hour for exercises, and a half hour for preparation of a light meal, They've even added an extra 15 minutes for catheter time. So from start to finish, my Friday morning should be done at 1:15, including meal preparation.

Today's first meal of the day was breakfast cereal and a cup of coffee. Please note that my diet specifically calls for high protein and high fat. There was most certainly sugar in the breakfast cereal, so that might give me calories, but very little protien and almost no fat, at least none of the good fats I need.

So after I eat breakfast, my energy problem is not only not solved, but made worse. Today it has taken me from 1:15 PM until 4:00 PM just to start feeling capable of writing. Now it is true that I nap after breakfast every day, usuall until around 3:00 pm. But today is different. Napping has made no difference at all. I feel almost incapable of doing anything. Aa I said, it's tough work even writing this blog. And now I need to rest some more.

Wednesday, 6 June 2018

Laundry Day Blues

Doing the laundry is a task set which is rapidly leaving my repertoire. To those of you who say "hurray" to my loss of this essential part of living, just bear in mind that I have no way to "run a quick load through the machine". I can't wash my favourite shirt to get it ready for tomorrow, not can a launder the wine towels after we make wine.

The set of tasks which make up doing the laundry start with sorting. Bear in mind that I cannot pick up a full laundry basket from the floor, so I have to dump all the laundry on the floor, then sort it into the baskets on my bed. However my arms and core muscles are sufficiently weak that I am unable to directly pick up the laundry from the floor; I pick it up with a grabby stick. For me, this is a long and tedious task, one which has now gotten to the point where it is so tiring I can do it no longer. I get a quarter way in, then my arms give out. So Home Care does this now.

The next step is getting the laundry down the hall and into the laundry room. If I have only one basket of laundry, or if I leave the laundry unsorted, I can make this run quite handily. After all, the chair is doing the work while I go along for the ride. The doors are a challenge, but I'm still capable, mostly.

Once in the laundry room, I face the difficulty of starting the washing machine so I can toss in the soap pod, then opening the lid with proper gentleness so as to not shut off the machine. Sometimes I wait for a while, just so when I open the lid, if it hits the control button it doesn't really matter. The pod and water are in already. It is, however, becoming so much more difficult to lift the laundry out of the basket and into the machine, another tiring task.

When the laundry is done, I now have a wet load of laundry to put into the dryer. I can do it, with some struggle. In fact the most difficult part is those last few items at the bottom, inevitably small things where somehow I have to reach deep into the bowels of the machine to get them. These days I use the grabby stick, yet even that requires a level of lift and contortion that wears on me.

Once the laundry is in the dryer, I just hit the button and go away, except that the button is atop the dryer at the back of the machine, another rugged reach. Mostly I can still make it. Mostly. So I leave, and wait for an hour before going back. Alternatively, an HCA has done the washing and put the laundry in the dryer, all possible within a two hour visit. That leaves me with retrieving the dry laundry.

The challenge in retrieving the dry laundry is that I must get it out of the machine, a low and extended reach into the drum, after which I must lift it up, over the top of the dryer and into the basket. I lost the ability to do that long ago, so now I use a grabby stick. Unfortunately the weakness in both my arms is sufficiently profound that after a couple of lifts, my arms just give up. They don't work. I have to stop, sometimes for as long as a half hour, before I can try again.

All in all, I'd rather just leave this to health care. Alas my current time allotment just doesn't make for it, except on Monday's when Kathy does home making. Then the allotment is three hours. Thus Monday is laundry day, unless I need something. Then I have to ask for help. HCA or otherwise.

Tuesday, 5 June 2018

Swatting The Fly

There are times, plenty of times, with this disease where get to the point that you just want to give it all up and say "fuck it". No matter what words you use, no matter how pure you are, no matter what upbringing, your sentiment will be thus. It won't, however, be the life and death decision. That one takes a lot more than an angry moment. In fact that decision is most likely to happen when you are calm and resolved.

The moments I am talking about are those where the disease has created limitations, which in turn create challenges which will ultimately lead to frustration. The last hour or so has been a prime example of how this works. First of all, I went shopping today, so I had groceries to put in the fridge and the freezer. I know things are beyond me, like the case of beer, a 15 can case. There is no way I can put that in the fridge; I didn't even try. I might try putting singles into the drink rack later, but for now, not a chance. On the other hand, there is the 3 pounds of skinless chicken breasts.

I bought the chicken to mostly replace the stuff Anne and I had in our salad last week. It was on sale; that helped too. I brought the chicken, along with a pound of hamburger, also on sale, in my basket home with me. The first thing I did was empty as much of the basket as I could, putting the chicken an ground beef on the counter beside the fridge.

In order to put things in the freezer, I have to raise my wheelchair to full height. I did so, with the chicken and the ground beef settled into my lap so I could put them in the freezer without having to drop back down to counter height between processes. The first thing I noticed on opening the freezer is that there was probably enough room to put the chicken in, up between an ice cube tray and the package of two remaining chicken breasts from that salad.

So I tried. I lifted that 3 pounds of skinless chicken breast as high as I could, which was not much at all. Then I braced my right elbow into position where I could use the other things in the freezer to lever my hand heavenwards, to the point where finally I could touch the edge of the holding space with the edge of the skinless chicken breast package. It was at that moment that the Strawberry Shortcake Cups and the ice cube tray beneath it decided it might be fun to shift sideways ever so slightly, just enough to block my entryway into the intended landing zone.

Thus frustrated, I knew what I had to do; remove the ice cube tray and the Strawberry Shortcake cups. So onto my lap the 3 pound package of skinless chicken breasts fell. In the process the chicken knocked the pound of ground beef off of my lap and onto the floor. I left it there. I wanted to get done with the chicken first.

So I took out the Strawberry Shortcake cups and the ice cube tray out of the freezer. In the process, I also knocked a frozen, premade Onion Soup pack out of the freezer too, down to the floor where it could happily keep company with the ground beef. Unfortunately, by this time and through all this effort, my arms were too tired to even pick up the 3 pound package of skinless chicken breasts. I let the chicken fall to the stovetop. So; time to take a rest, then perhaps try something easier; the one pound package of ground beef. I did the first part; I took a rest.

After a few minutes I started my engines and put them into full power. I picked up the one pound package of ground beef from my kitchen floor using my grabby stick and my alternate hand, an non-inconsequential process. Yet it ended in victory; I had the meat in my lap. Then, using my grabby stick as a slideway path, I slid the ground beef into its intended holding groung in almost one fell swoop.


Did I mention that all the while I am trying to put stuff in the freezer, I am being dive-bombed by a persistent housefly who must have gotten in through a crack at the edge of the screen door. It seems Samhar is not bothered too much by these little buggers, perhaps a consequence of her being raised in Eritrea, on the east coast of Africa. This flighty little bastard just wasn't giving up, so all the while I am swatting at the fly. He attacked! I went to swat! Only this time I forgot that my grabby stick was in my swatting hand. The aluminum handle smacked onto my brow, knocking the grabby stick right out of my hands and onto the floor.

I looked for my other grabby stick. It was on the  dining table, the kitchen door blocking my path.

Fuck it! That was all I could say. I managed to close the fridge. I managed to pick up the Onion Soup pack. I left the ice cube tray on the counter where it is duly melting away. Perhaps I can make a Gin and Tonic before it melts completely. I put the chicken in the fridge, awaiting tomorrow when I will ask someone to put it in the freezer for me. The fruit and beer remain in the basket on the counter. Samhar will look after them in the morning.

As for me, I rolled out to the kitchen table, whereupon that bastard fly began once again to torment me. Have you ever tried to swat a fly when you arms can barely move!

Sunday, 3 June 2018

Becoming A Snake

My tummy hurts. I feel like I might need to go to the toilet, but not enough to call for help from home care. If I didn't have ALS, I would likely just go for a walk or do so other activity, and my whole system would feel better. But I have ALS, and I can't do that. So here I sit, just generally uncomfortable, with no plan for resolution.

This happens fairly often to me, where I have a little bit of stomach upset with no way of really resolving it. It's part of the general discomfort of being stuck in a wheelchair, not having even the ability to at least exercise my upper body. All I do is sit here, like a lump, napping for hours at a time, sleeping 10 to 12 hours in a stretch. It is truly more sedentary than the most sedentary existence that you can imagine.

It is becoming awkward to do even the simplest of things with my arms now, let alone not being able to do anything at all with my legs. My HCA made a terrific breakfast for me today, in spite of having to stay extra long to do it. She made Eggs Benedict California style with Avocadoe and Shrimp, along with hashbrowns with mushrooms and onions. You couldn't fnid a better breaakfast on any restaurant menu.  Sadly, I was unable to lift my fork to my mouth in order to eat. Nor could I cut the eggs and muffin without a good deal of effort.

I ended up eating sideways to the table, so I could lean back and not have to raise my arms to lift the fork. I stayed in that position while drinking my coffee too. In fact I stayed in that position after working my way through breakfast, leaning even further backwards to take a nap, sleeping for about three hours after my meal.

Maybe I'm like a snake, eating what might be a normal meal for others but that which has become a challenging meal for me. in size and in effort required to eat. Maybe, like the snake, the energy required in digestion itself makes me somnolent. Maybe snakes have a form of ALS too. After all, have you ever seen a snake walk or use arms? Maybe, somewhere back in time, their appendages just atrophied right off.

Oh my God! I'm becoming a snake!

Saturday, 2 June 2018

It's The Wait

There are two sides to the ALS longevity story. We all hear about the exceptional people who live for many years with this awful disease. People still ask me why Stephen Hawking lived for so long. The answer is simple; machines. That plus an excellent health care system and a reasonable bank account. Those are factors which lead to a longer life with ALS.

Yet we hear so litte of the other side of the story, the negative exceptionalism, the incredibly short life spans with ALS. I've heard many of these stories, yet so few are in the media. Today I read of another PALS who was diagnosed last June and passed away late this May. From diagnosis to death was a journey of less than a year. The shortest I have ever heard of was three months from onset of Bulbar ALS to death.

This is why the published expected life span with ALS is so variable. I've heard it expressed as 3 to 5 years from diagnosis, or as 5 years from initial symptom onset. In either case, I havc clearly surpassed my "best before" date. Others have done better, others have done much worse. It is the same with all things in life; those who do well, those who are average, and those who do poorly.

I'm still not sure which is better; slow, fast, or average. I think I might have preferred a rapid decline. It would have been much more dramatic, much more noticeable, harder to deny or ignore, and a whole lot less expensive. Yes, there are things I would have missed. I will start missing other things the very moment I die. Life will continue on without me, as it would have if I had died 3 years ago.

I don't mind being alive. I doubt I will notice being dead. It's really the wait that's killing me.

Friday, 1 June 2018

Calm? Who? Me?

OK. I'm back in my PWC. I am not exactly sure what they did with it, but I understand there are parts on order, so it looks like they will either be here to do more service work, or perhaps they will ask for it to come into the shop again. At least now I know I can survive in my manual chair. With help, perhaps I can even get out, either via a pusher or in the van, or some of both.

It certainly has been difficult in the manual chair. I discovered that I can barely make the slight incline into my bathroom, and I can forget altogether about going out on the deck, over the ramps on both sides. I also discovered I need to secure the indoor ramp before something truly serious happens. I did find I could still move with some ease around the apartment, excepting the ridge between the dining/kitchen and the rest of the apartment. I made it, but it was not easy.

The whole weakness in my arms and upper body has become significant. Feeding myself is continually becoming an increasing challenge. I no longer bother trying to pick most things up once I drop them on the floor, unless it is truly urgent. Even in these cases I get stumped sometimes; I end up waiting for an HCA to arrive and help me.

I am not sure how long this process in my arms and shoulders will take to be complete, where the upper part of my body is as paralyzed as the lower part. I have this calm sort of acceptance about it happening, oddly coupled with the deeply seated anger I have about having ALS. I'm good, until I snap. This situation has lead to one key decision on my part. I am increased my medications, the ones I have for depression and PBAFTD. Perhaps that's why I am so calm about it.