Tuesday, 31 July 2018

Rescue From The Pit Of Despair

I am in this deep pit of despair these last few days, coupled with an exhaustion which does nothing but make me want to sleep. Sleep helps me avoid the terrible thoughts of the deep depression, so I guess it's a good thing. Today, I am trying to climb out, trying to wake up. Today, notwithstanding the tremendous difficulty, I am going to get out of my building, even if only to go buy milk and sandwich meat.

Yesterday my afternoon HCA, or some other evil spirit, left the spout open on my catheter bag. I called the agency, asking for her to return and wipe up the mess. She returned all right, angrier than a slapped bumblebee, indignantly telling me she didn't do it, that I shsould not have called the office saying she did it.

My resposne was simple. Someone did it, so  please clean up the floor. "If I do this, I will be late for other clients, and this is not another visit? Should I put you to bed now?" It was not even 7:30 PM, so of course I said no. I also said "We're not doing this. Get the mop and clean up this mess." She complied, grumpily and offended that she had to do this. In spite, she cleaned the dining area, but not the hallway nor my bedroom where my tires had laid down tracks of urine. No, she did the least possible, then got out of my apartment.

Then I tried to get dinner going. I wanted to get some pork chops out of the fridge. I opened the fridge door to discover my angle to the fridge shelves was such that I needed to turn 180 degrees to get a better angle for grabbing. Unforunately that turn somehow engaged the headrest of my wheelchair with the door of my freezer on the fridge, bending the headrest and ultimately pulling off the lower shelf of the freezer door, spilling the contents asunder.

The really sad part of all of this is that, even with good positioing, I waw still unable to pull the pork chops out of the fridge. Not enough strength. I sat there for a minute, contemplating where I was, how far I had come; wondering if I should  finally surrender to the inevitable.

I gave up. I called my friend Tonny. He came over and sized up the mess. He had it fixed in a matter of minutes, then asked me what I was doing. I said I want to cook those pork chops. So he did that too, making enough so that I could today as well.

Tony says I need to invite someone over every couple of days. Then they can help me cook dinners with enough leftovers for the next few days. The honest truth is I already have a few days of leftovers in that damned fridge. His idea is the right idea. I'm going to try it. So far I have a meal for today, Wednesday, Thursday, and Friday, except I will need help getting the pasta down for Thursday. I will ask Dion to take i down when he is here on Wednesday. Brian and Tanya are here on Saturday, so all is good for the rest of the week.

The first two events of my day could have driven me deeper into my wallow. Actually they did, especially the angry HCA. I don't need that shit. Then came Tonny, both with the fridge rescue and with cooking my pork chops. That deliverance from disaster made an amazing difference to me, affirming that I have friends who care, taking control of a situation where I had lost control. 

So today, things are looking up. I'm going to Safeway, maybe even Coop!

Monday, 30 July 2018


It's too hard to type today. My arms won't reach. My fingers are tired. I'm done.

Sunday, 29 July 2018

Should I Stay Or Should I Go Now

It's days like today that get to me. I have nothing on my agenda until my daughter Kate gets here with her two youngest boys. They are coming for dinner. I suggested I make pork chops but Kate insists on getting Chinese take-out. Yet here I am, wondering about what I will do for the next five hours, wondering about other days where I sit, doing nothing for long periods of time. The combination of boredom with a real sense of valuelessness in my life leads to dangerous thinking.

I do wonder why I continue to exist, why I fight to stay alive. It's not really much of a life. I am unable to do much, and even if I could I have no budget for it. If I was well, I would be working. That would take care of so much in my life. My work gave me purpose, and paid for all of my adventures. These days I need help paying for groceries.

I know I should be grateful for what I have. I am. There is not a moment when I am not reminded of how kind and helpful those around me are to me. I merely have to ask and there is someone to take me shopping, take me out for a drive, take me to the movies. Many times I don't even have to ask; it just happens, as if my magic.

Yet here I am, wondering if I should bother to keep going, wondering if perhaps I might have pushed this whole thing a bit to far. I can no longer open a door. I can no longer pull up, then put on, my seatbelt on my wheelchair. I can still cook a bit, but not much, not a great many things. My diet is becoming limited by my abilities. I want to make a Greek Salad, something I really like, something I make, or used to make, a lot of. Yet the mere thought of the exertion is too much for me. I close my eyes to rest even when I think about it.

Road trips are a distraction. Travel is a distraction. Shopping is a distraction. The problem is that when I have no distractions, when I am alone with nothing to do, I start to go dark, wondering if I really have any good reason for being here. So far it's a toss up; there might be reasons to stay, but there are lots of reasons to leave.

Saturday, 28 July 2018

Trapped Indoors

My arm and shoulder strength has fallen to the point where getting out of the doors on my building has become problematic. I have to lean forward, something that is hard to do when I am set back in my wheelchair. Then I have to move my hand forward to the door handle, another non-trivial task. Finally I have to push or pull as needed.

Pushing is not a real problem. I approach the door closely, putting pressure on it with my toes. This pressure, when applied properly, causes the door to pop open a bit once I get the lever handle down. I have to be careful, though. If I apply too much pressure with my toes, I am unable to move the lever. If I apply too little pressure, nothing happens, leaving me to start the whole process again with a bit more pressure on the door.

It's the pulling part that is most difficult. If I can position myself just slightly to the side of the door, usually I can open it enough to tuck my wheelchair foot pads inside the open door, then use my wheelchair to push the door open completely. However if I don't get that tuck quite far enough, the first movement of my wheelchair will lose the edge of the door, allowing it to close. I have to start again.

What's worse is when I am in an enclosed hallway where the door swings inward. I have to move as far as I can towards the wall where the door opens. Then I lean forward, doing my best to grab the lever or knob so I can pull it slightly towards me, until it hits the chair. After first contact, I back up while holding the lever, opening the door as I go, trying to make a turn such that I can move myself forward into the gap, finishing the job of opening the door. This, of course, assumes I don't lose my grip on the door knob while attempting this ballet of chair and door.

I've asked the condo board if they might consider putting handicapped buttons on the three doors I must use to exit the building. Their response, rightly so, is that it's not just three doors. If they do these three for me, they have to do all the exit/entry doors in the three buildings in our complex. That's about 10 - 15 doors. This doesn't include the inside fire doors which would also make the list at some point. So things are not likely to change here.

It's another reason to have a live-in, so I can have some help with the doors when I want to go out. For now, though arduous, it is a task I can complete most times, albeit with multiple attempts. I've already begun avoiding going out because of this. Soon, though, I will be unable to do doors, even my apartment door. Then I will be truly trapped without help.

Friday, 27 July 2018

Exhaustion Day

My exhaution level today is full-on, so much so that I just cancelled dinner with a friend. I am almost non-functional. I've been resting all day, hoping for my energy levels to rise to the point where writing this post would not wear me out. That has not happened, so this will be a short post.

I think the massive state of exhaustion is the result of all the stuff happening in the last few days. Shelby left. David and I are searching once again for a live-in. CBI is back, screw ups and all. I had a brand new HCA today who, along with her supervisor, had never handled a condom catheter. They went through three of them. The one they finally got attached has just come off at first use. We never did get to ROM exercises.

Sleep, or napping, or resting, whatever you want to call it, has been my sole activity up until now. In a few moments, it will once again be what I am doing.

Thursday, 26 July 2018

Shelby Quit

Shelby quit. Actually she's already left, headed back to PEI. It's a shame really; she was very good at her role as an HCA. Unfortunately she started to express some serious homesickness about a week after she was here, then spent that week struggling with the decision to stay here or to go home. By the end of the week, she had decided. She wanted to go, as soon as she could. Ulitmately she left before completing her two weeks notice period, she was so anxious to get back to PEI.

When she told me she wanted to leave, I said I wouldn't say anything publicly about her decision until after we came back from our visit to Vancouver. I also said I would not put anything in my blog until after she left. Hence what may seem a surprise to others is no real surprise to me. To her credit, while she was here she continued to do an excellent job of caring for me.

I feel like I have been left in the lurch. All of this has left me both emotionally and physically exhausted. The work in finding a live-in caregiver is extensive. David is once again taking the lead in all of this yet I still carry my own portion of interviews, decision making, online postings and such. Even the process of switching back to CBI and regular home care can be tiring. I was reminded at 9:00 AM this morning that they have their schedule; it will not bend to mine.

On the positive side, David and I have learned a great deal about this process, about the kind of person we are looking for. We have learned what we need to emphasize in the interview process, important questions we need to ask, information we need to provide before taking on a new caregiver. I am hopeful this interval will be short while at the same time one of the things I have learned most of all is to not rush things, to give everyone a chance to sleep on it.

Wednesday, 25 July 2018

I Don't Want To Eat

I hate feeling nauseous. It happens sometimes, for no apparent reason, that my stomach goes off. It's been happening now for a few days, inconsistently, along with a general feeling of unease in my lower bowel. Neither end is going crazy; both of them are making threatening gestures. I just feel really uncomfortable.

A part of this has to be the amount of time I spend sitting, or laying, idly, not moving any part of my body except my arms, hands, and head. Even though I still have some muscle strength in my back muscles, I can't really move much of anything below my shoulders. When my body doesn't move, other parts of me don't move so much either. It's so important to realize how much your core muscles contribute to your digestion and bowels.

The other really annoying thing about this feeling is what it does to my appetite in general. Last night I was talking about having Grilled Cheese Sandwiches along with French Onion Soup as a brunch today. This morning, when I got up, I realized that was definitely not going to happen. So, as she was dressing me, I suggested to Shelby that I might want something really simple, perhaps even breakfast cereal. Then, as she got out my breakfast cereal bowl, my stomach lept into my throat, demanding that all thoughts of food cease. I complied.

So here I sit, perhaps humgry, perhaps not. I'm certainly not up to eating. Water might be okay, perhaps a latte or coffee. Anything else is a mugs game. Even thinking about eating makes it worse.

Tuesday, 24 July 2018

Questions About Patreon

I was asked again what this "Patreon" thing was all about. So I thought I might explain the three different ways people can support me, and this blog.

First, for those of you who wish to make larger contributions, be they on a monthly basis or an ad hoc basis, I recommend you email them to me via an Interact bank transfer. However this kind of transfer is only available in Canada, so that limits things a bit. If you are in Canada and wish to support me in that way, please send it to "rmcbride@mcgi.ca". Yes, that's my regular email address. Yes, I did just intentionally publish that information in my blog. No, I am not worried about SPAM.

Second is the "Donate" button on the top right of my blog home page. This button works to deposit funds into my PayPal account. Once again this is best for single, lump sum contributions. Since it connects to PayPal, you can use all kinds of payment methods including PayPal itself, credit cards, and even pre-paid Mastercard debit cards. Note that PayPal charges me 3% as a handling fee, so if you donate $100, I get $97 and PayPal gets $3.00. This is an approximation. There is fine print on the PayPal site.

Third is the Patron approach through an organization called Patreon. You will find the link at the top right of my blog home page as well. This is the one most people are asking about. It is intended for those of you who wish to support me and my blog by making a small monthly contribution on a consistent basis. If you are one person who wishes do pledge $20 a month, terrific! If there are 10 people who can pledge $20 a month, that adds up. As with all these services, there are small fees associated with this method which are taken from the contribution. Also, as with similar services, you can make your pledge using your credit card or PayPal.

Of course all of this assumes you want to support me and contribute. If you don't, or can't, no worries. I understand completely. There are so many competing demands in our lives these days. Regardless, I hope you find something worthy here. I know I do. I'll keep writing as long as I can.

Monday, 23 July 2018

The Ride Home

We are back from the coast in a day long drive which exhausted Shelby, tired me out, and left David feeling fairly good. Neither Shelby nor I slept well last night, both of us haunted by our own individual demons. Today I can barely move my arms. I can type, so that's good. Duration of typing is another question.

The drive home yesterday was what you might normally expect of a drive from Vancouver to Calgary; 12 hours of everchanging and consistently beautiful scenery. We saw no large animals along the way. Thiis was mostly unfortunate for Shelby, as this was her first trip through the Rockies to the coast. I get the feeling she would rather have stayed home, or at least done shorter segments.

The only real excitement was when David had to make an emergency stop. It was at that moment I realized my seat belt had not been done up after a catheter check. My bad. That moment came with me sliding out of my wheelchair and into the small space between my wheelchair legs and the back of the seats in front of me. Shelby's response was to scream "Om My God!" David's response was to wait a moment then ask if I was okay. Other than being squished, I was fine.

We stopped the van. David and Shelby removed the power wheelchair. Shelby put the sling underneath me, then lifted my back into my wheelchair. I put my seatbelt on then rolled back into the van, whereupon David and Shelby secured the chair once again. Shelby said she had never seen such a "shit show". She's only 19; she doesn't have a lot of experience yet. I've seen much worse.

We ended up getting home at about 10:30 PM. After ablutions and clean underwear, both Shelby and I hit the sack by 11:30 PM. Neither of us slept well; I because the fan in my room was making this incredible noise, and Shelby most likely because of her reaction to me sliding by her in the van.

Saturday, 21 July 2018

Happy Birthday To Me.


Today is my 63rd birthday. It's another milestone, another marker I did not expect to make. When I was diagnosed with ALS, I was 57 years old. By that time I had been symptomatic for almost 2 years. Who knows, maybe there were symptoms before that, things I did not see or understand. When I was diagnosed, the doctor said I would likely live 36 months with ALS. Once I got over the shock, I did some research and confirmed that 36 months was the average life expectancy for someone with ALS. I also realized I had already been sick for 2 years. The numbers did not look good.

Then I did pretty much the only thing I could do; I got on with living my life. My goal was to get what I could out of life for as long as I was living. ALS was not a death sentence for me. It was a life sentence. I would have to live with this disease for as long as I was alive. I figured that even 60 would be a crap shoot. I never figured I would come up winning for this long.

Sixty came, and went. Sixty-one, then sixty two. Each year I wondered if I would see another. That has not changed. This year has been very cruel to me, stealing much of my arm strength, my ability to drive, my ability to even lift a bottle of wine. The collapse of my arms has been stunning to me. Maybe I am not so different from other PALS, except that instead of three years I might get six. That's all of it that I can see.

Will I make it to 64? Well for me life continues to be a crap shoot. Hell, I don't even know if I will make it to next month, let alone next year. All I can do is what I have done from the beginning. Wake up each morning. Live the day I am given. Go to sleep each night. It doesn't really matter if I make it to 64. What really matters is if I make it to tomorrow.

Friday, 20 July 2018

In Vancouver

One of the truly terrific things about coming back to Vancouver is visiting old haunts, seeing old friends and spending time with family. What's even better is when I get to share those haunts with others, especially those who don't understand that I had a life before ALS, that I did things before I was in a wheelchair. It was like that today.

After some indecision, we left the hotel and headed for Cypress Bowl. The lookout halfway up the hill offers a tremendous view, an amazing overlook of the city, English Bay, Burrard Inlet, and Georgia Strait. For people who have not been there, it kind of leaves them in awe of the scope of the city and its surrounds, the landscape, the mountains, the water. The list goes on and on. Shelby suddenly came to realize that Vancouver is nestled on the edge, hemmed in be ocean and mountains, the sprawl spreading out the Fraser Valley and south to the US border.

Our next stop was Horseshoe Bay and the Troller Pub, a traditional haunt of mine from my seagoing days. Megan Sewell was as wonderful as ever in her loving and effusive greeting. We talked for a bit, catching up. Then she let us have a key for the docks so I could show Shelby and David around, and check out Chris Gordon's boat Rainbow. It was a multiple picture opportunity. We just so happened to see a Catalina 27 which could very easily have been my boat in the past. I was happy to see it, remembering once again old days and old friends.

From there we drove Marine Drive all the way to the Lions Gate Bridge, then came off and up to Prospect Point in Stanley Park. It was nice the hear Shelby exclaim "Oh this is so pretty!" as we walked up to the lookout. Until then I wasn't sure the city had had much impact on her. Given the pictures she took, I'm pretty sure she was impressed by the park and the city.

Granville Island Market was our last stop. I must confess this was as much for me as for anyone else. I wanted my traditional coffee, or rather Caramel Machiotto, from the Blue Parrot Cafe. I wanted to sit by the window and watch the watercraft go by, to see the gulls stealing lunch from the tourists, to hear the sounds of the market. We weren't there long, but it was long enough to grab a loaf of Olive Bread from the Terra Bakery.

Then it was back to the hotel to drop off Shelby, and on to dinner with Chris, Jeanette, Chris, and Dianne. It was a great visit, although a bit difficult for me. Their lives continue onward while mine has been frozen in place, or at least somewhat frozen in place. I admit to being on a road trip. Yet their lives sound so much more active, so much more lively. It hurts a bit, especially when faced with needing help to eat, a straw to drink a beer.

Even with that bit of sadness, the visit, and the day, was terrific. I'm glad I could be there, glad I could visit. I am lucky to have such good friends.

Thursday, 19 July 2018

Out And About

I missed writing yesterday. It's because I am on a road trip, along with David and Shelby. It's so cool to be on the road again, watching the miles fly by, admiring the majestic mountains, the seemingly endless forests. To fly down the highway, from prairie to peak, overland, in and out of valleys, from pass to pass; it's an adventurer's life, one I miss so much.

It was the same with my boat, to get on board and go, simply to explore, to wonder about what was around the next bend in the shoreline, after the next narrows, beyond those islands up there. I am compelled to remind myself that I have had a lifetime of this, between waterway and highway, seeing what might be beyond whatever lay next in front of me.

Nonetheless, I am sad. On this trip David and Shelby are doing the driving. I am tucked away neatly in the back seat, out of conversational distance. Thanks to the van windows, I have a decent view, but only at essentially eye level. I can't look up, seeing the mountaintops off in the distance, barren of snow, shimmering in the summer heat. Now if only a bear, a deer, an elk, even a moose were to wander alongside the road. That would be something to see.

The effort involved in getting me road worthy is something to see too. These days it takes a portable lift, a sling, a full suitcase of medical supplies, and another small suitcase for my clothing. Eliminate all the acoutrements of illness. All you are left with are a few shirts, some pants, socks, underwear. Yet with ALS, it takes two other people to ensure I can travel, get into bed, get out of bed, do all the things I need to do. It is no easy task. I am grateful that David has made this work, that Shelby is continuing to care for me on the road. I can still get out and about. That's the good part.

Tuesday, 17 July 2018

I'm Tired

I'm tired. I was tired when I got up this morning. I was tired as I ate my breakfast. I was tired as I went out to get a replacement for the water jug I broke. I was tired when I stopped in the food court of the mall to rest up for a bit. I'm tired now, ready to nap, to sleep.

I'm tired of being tired. I'm tired of the exhaustion. I'm tired of the effort. I'm tired of the work, the weakness, the weariness of it all. I'm tired of dropping things. I'm tired of being unable to pick them up. I'm tired of things getting heavier and heavier as I get weaker and weaker. I'm tired of so many things being out of my reach, beyond my grasp, too far. I'm tired of shaking hands, trembling arms, losing muscles.

I'm tired of illness. I'm tired of every little thing that turns into a crisis or event. I'm tired of living with the ever-present threat of death. I'm tired of all the drugs, catheters, towels and wipes. I'm tired of having to have someone else wash me, clean me, wipe up after me. I'm tired of being sorry, embarrassed, humiliated. I'm tired of bowel issues, urinary issues, breathing issues, eating issues.

I'm tired of the fight. Each day I become less and less able, less and less willing. Each day the top of the mountain seems higher, further away, shrouded in mist, angular. Each day I become increasingly dependent, unable to do the least thing for myself. Each day I have to wake up and face this monster. Each day I have to will myself to live and go forward.

I'm tired of having ALS.

Monday, 16 July 2018

Effort And Planning

It's been tough the last couple of days. My arms have been especially weak, at times simply falling at my side, unable to raise even their own weight. When this happens my elbows lock, leaving me only my shoulder muscles to work with, weak as they are. What I end up doing is trying to fling my locked arm around, up far enough to hit the armrest on my wheelchair. This unlocks my elbow, allowing me to rest my arms until they are ready to go again.

There's a lot of this kind of stuff lately, where I have to use both hands to pick up a cup, where I have to rest my arms after a few bites of a meal, where I put myself on a slope to eat so I don't have to life straight up. Right now I want a cup of water. I'm stalling, not wanting to get it because of the work involved.

Those of you who ask where my caregiver is need to realize that she doesn't work 24 hours a day. She is out for a walk right now, rightly enjoying the pleasant, warm weather here in Calgary. She is here plenty. Last night I had a midnight catheter accident. She got out of bed at 5:00 AM, came into my room, fixed me up, then went back to bed. That's a bit of an interruption. So I want to be sure to interrupt as little as possible, to do as much as I can on my own.

In reality I could have asked her to fill my water cup as she went out. She walked right in front of me, stood there for a moment, then left. It would have been very easy to ask. The truth is that I didn't think about it. I was focused on the moment, not on the absence of water. I will get my own. It will just take some effort and planning.

That's what I need to make sure I have a bit of arm strength when I need it; effort and planning.

Sunday, 15 July 2018

What's Coming Up Next

I am having increasing problems lifting my arms. This means things like eating, drinking, picking stuff up; all kinds of things where I use my arms are now almost beyond me. A few months ago it was a periodic thing. Now the normal is where my arms have great difficulty; the exceptions are where things work at least halfway decently.

Another new norm; this last few months have seen a near total collapse in my arms and shoulders. They have been leaving me for a while. The only thing which has changed has been the pace of change. This disease forever leaves me struggling with the new normal. I read on Facebook today that ALS really stands for Always Losing Something. This is more than just a bit true. It is the foundation of the disease.

I wonder how long it will be before I am completely without arm strength? This is the place I said I would not go. Yet here I am, marching firmly towards having no useful arms at all. I am glad I have the MAID stuff in place although I wonder if I will really use it when the time comes. I suspect I will, even though I am in no hurry. I'm getting by. I'm mostly happy. My mood is generally good. I'm not sure it's time to leave yet.

Still, yesterday was kind of depressing. I went out for sushi with David. He had to help me eat a couple of times. I managed the rest, although I had to use a fork instead of chop sticks. What I have learned in the last few weeks is that if my arms give out, all I need to do is rest for a bit then try again. Usually them come back. The sad part is that I know for sure there will be a time when they won't come back, a time when they are done completely. That's what's coming up next.

Saturday, 14 July 2018

What Next?

This is just plain stupid. I now have a blockage in my urethra! Arrrrgh. It feels like a kidney stone, sharp and cutting as it sits in there stopping the flow of urine. When it gets really exciting is when we put in the in/out catheter. That's when it really hurts, as Shelby pushes past it, clearing the way to drain my bladder.

The only way to really deal with this is for me to drink plenty of fluids, perhaps as much as two or three liters a day, hoping that all of this will flush out the stone, or worse, stones. That also assumes that I will be able to pee it out. Since yesterday I've produce very little urine in my catheter bag, while draining my bladder has produced near record amounts of urine. Yet I don't think the stone, assuming that's what it is, will pass through the in/out catheter. It feels like it might, but it hasn't yet. This also assumes there is only one of these buggers in there.

This is the whole deal with ALS. Everything is a bit more complicated. Everything takes more out of me. Everything cause me more difficulty, more pain, more exertion, more exhaustion. Kidney stones are a tough thing for normal people. For me they seem to be more painful, thanks to pushing a catheter in there twice a day. For me they seem to be taking longer to pass, most likely because my bladder muscles are weak, making the urine stream to weak to push against them.

When will it be over? When is enough enough? Why do I keep fighting this war in the face of certain failure, steady pain, complete exhaustion? What next?

Friday, 13 July 2018

The Swelling Has Gone Down

The swelling on my lip is pretty much gone, as is the swelling in my throat. I seem to be past the point of crisis, where I risk throat closure or something like that. So now all I have to do is see what my medication routine will look like as I go forward. I suspect the Ramapril, a high blood pressure medication given automatically to people who've had heart attacks, will no longer be on the list.

Once I am done with the Prednisone, Zantac, and Benadryl, I will actually be taking fewer medications that before all this, something which makes me feel good. I have long suspected that many of the pills I take are "automatic", something doctors just assign when seeing a given set of symptoms. The only real problematic medication left is the Cipro, the antibiotic I will be taking one week on and one week off in an attempt to keep my bladder infections at bay.

These days I am a very expensive member of the health care system. My body is failing me in so many different ways. I'm having contnual problems with my bladder. I have allergic reactions to medications which I have not had in the past. I'm having trouble with all of the ALS damaged parts of me. In general, my body is just a wreck.

It's a good thing my mind is intact. At least I can enjoy life around me, fitting in what I can, when I can. At a minimum, there is still good food, good wine, good company. In that regard I am fortunate. It's what I focus on when the bad stuff comes along, as it will continue to do. It'[s all I have left. It will do for now.

Thursday, 12 July 2018

Fear Will Not Decide For Me

I, like so many others in this country, live on the edge. Not the ragged edge, not even the thin edge. Perhaps on the slightly thin edge, away from absolute danger yet near enough to wonder from day to day just what tomorrow will bring. Of course most of this "edge" is financial although a good amount of my edge has to do with my health.

My throat is still somewhat swollen from angioedema. My upper lip is still slightly oversized. It's not getting worse, which is a somewhat good sign. On the other hand if it is getting better, the rate of improvement is not substantial. I live with the constant concern now that my throat will suddenly close up due to some random reaction to the chemical stew of drugs I am taking right now.

My finances are like that too. I never know in the middle of the month if I can make it to the end. Good things happen yet I find myself in this place often, hoping for a monetary miracle to occur. They do. Often. I seem to make it through.

I refuse to let these fears dominate my life. I want to live as much as I can before I die, be that a financial or physical death. That's why I bought a wine kit today. It's my way of sticking up my middle finger at the threats. I will not stand still because something bad might happen. I will keep living day to day, as best I can, for as long as I can. Should the swelling of angioedema end my life tonight, someone will drink this wine. That I know.

Living in fear is no way to live. It is a burdensome jacket, sweltering in the summer heat yet failing to bring warmth against the winter cold. Fear simply weighs you down. It is not that I am not afraid. I most certainly am. I just refuse to let fear be the thing which makes my decisions for me. I trust in the good things. It always seems to work out somehow.

Wednesday, 11 July 2018

A Rough Couple Of Days

It's been a tough couple of days, what with hospital visits, wheelchair crashes, life-impacting decisions, and lots of crying. I don't really know where to begin, so I will begin at the beginning, yesterday morning.

I awoke yesterday with a fat lip and a swollen throat. That might seem unimportant normally however in light of the allergic reactions I have had lately, it was just the thing I had been warned about by EMT's and doctors. I was told if this happened, I should go immediately to ER. For me that means a call to EMS right away.

They EMS team arrived, quickly assessing me, quickly agreeing that  I needed to go to ER. They soon discovered their new, gas lift, larger stretcher did not fit into my building's elevator. After much discussion, it was decided Shelby would put me in the van and drive me to ER instead of me taking an ambulance trip.

Off we went, the two of us in the van, to the ER at Foothills Hospital. I had taken a couple of benadryl to calm what we all though was a continuing allergic reaction to the MacroBid I had taken a few weeks back. After checking in at the ER we went through the typical wait time for triage. Triage must not have thought much about my situation as our wait time was close to five hours. After waiting with me for four hours, Shelby and decided she should go home. After she left, I slept for another hour, at which time I was ushered into a private ER room, one with a sling and lift.

I spent a couple of hours there, waiting for the results of various tests. Then, with no warning, two HCA's showed up to put me into a sling and onto the hospital bed. I had stayed in my chair until then. I asked why, to which the professed no knowledge whatsoever. I said "no". So they called the nurse. She explained that the doctor wanted me in the hospital for an undetermined period of time. I said "no",

Finally the doctor showed up. He dropped the bombshell. I have angioedema, an inexplicable swelling under the skin which generally shows up around the lips and in the throat. That's the really dangerous part, swelling in the throat. It can happen in just a few minutes, choking off my airway completely, causing death through respiratory arrest. I would, or rather could, die at home before anyone could get me to the hospital.

He also told me the only response to this life threatening situation was intubation, putting a tube down my throat until the danger of swelling passed. If things went really badly, I could die. So I had a choice. Stay in hospital and get intubated, or go home and risk dying if things got bad in a hurry. I chose to go home. If I am going to die, I would prefer to do so in my own bed.

The immediate decision made, I chose to roll home rather than call Shelby for a ride. I needed time to think about my decision. I don't really want to die, especially from something with such a simple treatment. On the other hand, I really don't want to die in hospital. There is a treatment through Benadryl, Prednisone, and Zantac which could work well. The end target is four days. If the at home treatment does not significantly reduce my symptoms within four days, I will go back into hospital for intensive treatment. If my throat swelling gets worse, I will go back into hospital for intense treatment. Otherwise, I will stay at home and hope the drugs work.

Then, one the roll home, I fell over backwards in my power wheelchair while attempting to make a curb. My head was protected by my headrest. The rest of my body was protected by the wheelchair. Fortunately there were several people around who got me back upright. Unfortunately it looks like I bent the frame on my PWC. I've called my ALS Case Worker at the ALS Society. He will come over today to inspect it. I asked him to bring a replacement; my chair will have to go into the shop to get bent back into shape.

As I said, it's been a rough couple of days.

Monday, 9 July 2018

On Balance

It's not as simple as it might seem, living with a paid caregiver. She is a young person with wants and needs of her own. There are things she wants to do, things she doesn't want to do, times when she is tired. Insofar as is reasonable and possible, I need to respect these times. While she is technically "on the clock" for about 6 or 7 hours a day, six days a week, those hours are spread out. There are times in between when I really don't have the right to impinge on her.

Today has offered a couple of good examples. Her cousin texted her about going to a concert at the Stampede on Wednesday night. She wants to know if I would be willing to go to bed early, so she could leave me in bed and come back late, without having to worry about putting me to bed. I need to think on that. First, I don't really want to go to bed early; I would rather stay up late that night. Second, I don't want to be so inflexible as to drive a wedge in, making her want to leave.

The second one was when we were at Safeway. I wanted to go home through the mall to look at the Stampede decorations. It's not a big deal; I can do it any time this week. The mall even has a Stampede Breakfast tomorrow from 9:00 to 11:00 AM. I could go, eat some pancakes, then check out the mall. I don't really need Shelby for any of that. So I acquiesed today. We came straight home.

I want to be a good employer. I want to have a happy employee. In all of this, there must be balance. While my care must come first, her wishes must be respected as far as humanly possible. She can quit any time. I can let her go with two weeks notice. I have to ask myself every day if I want to go through the search and hiring process all over again.

Sunday, 8 July 2018

The Telephone Game

Have you ever played that game of Telephone, where you tell the person next to you something, and they tell the person next to them, and so on until the end of the line? In most cases the message at the start of the line differs dramatically from the message at the end of the line, except for very simple messages. The reality is that the more complex the message, the more likely it is to be completely garbled at the other end. This is what happened to me today.

Last week I was arranging the final days of care coverage with my AHS Case Manager. I wanted the normal routine on Monday, then for the rest of the week there was to be no afternoon coverage. Shelby was to take that on immediately. The morning and afternoon  services were to be provided all week, with the exception of Saturday night, as we were to be at my daughter's wedding that day. Finally, all CBI services were to be finished after Sunday evening. Sunday was to be complete services as that is Shelby's day off.

I know. It's a bit complicated, perhaps too complicated for AHS and CBI. The afternoon cancellations were the first challenge. On Monday I spoke with CBI to ensure they understood what was happening. Things went well for the rest of the week, with morning care and evening care coming as planned, mostly on time. By Friday Shelby had the routine down pat. We were good to go for Saturday, wedding and all.

Sunday is where the wheels fell off the cart. I have now come to learn that there is no difference between "after the last visit Sunday" and "Sunday." My AHS Case Worker put in a cancellation notice for "Sunday" notwithstanding my request for "after the close of business Sunday" and "after the last visit Sunday". So this morning there was no HCA to get me out of bed. By the time I realized this, Shelby was long gone on her day off, somewhere with her 9 year old twin nephews, seeing a movie matinee.

It was a mad scramble with AHS doing their best to heat up CBI to deliver a caregiver. CBI said they would get someone, which really meant they would try to get someone without much effect. So I lay in bed, hour after hour, waiting. Finally at about 1:30 PM I got a call from Ramilla, one of my regular CBI caregivers, telling me that she was scheduled for my 4:30 PM visit. I let her know what was happening, that I was still in bed. She said the earliest she could come would be 3:00 PM. For even that, I was grateful. She arrived on time. My day began about an hour later after completion of my morning routine.

I really do have to learn to keep things simpler. Complexity just does not work for most people, especially AHS and CBI.

Saturday, 7 July 2018

Kate's Wedding Party

It's been hot the last couple of days. When it is even a bit hot outside my apartment heats up like an oven. We've had the AC and fans working overtime just to keep things reasonably tolerable. Opening the windows actually makes things worse; it seems to concentrate the heat more than dissipate it. So I have awoken the last couple of days, early, covered in sweat, completely uncomfortable. Yesterday the heat was such that I showed lividity where the blood was pooling in my back and rear end.

The heat affects me in a couple of ways. It makes me weaker than normal. It ramps up my thirst so I drink more water, not a bad thing. It makes me nauseous when I first get out of bed. This morining my arms were so weak when I woke up, thanks to the heat primarily, that Shelby had to feed me some mango just to get the engines started. After that bit of coolness and sweetness, I managed to drink some water, and even a bit of a latte she made for me.

Still, I am sweating heavily right now. I've opened the front door to my building hallway just to improve the general airflow. The hall is air conditioned as well, so I am hoping the air exchange will generally cool things down for me.

Fortunately the day will not be spent at home. Today is the day of my daughter Kate's wedding celebration. She was actually married last November, but it's hard to throw an outdoor farm party in November in central Alberta. You may be all right; you may be snowed under. So she wisely decided on a mid-summer celebration.

We'll be headed out in an hour or so. David will be driving. Shelby will be in the front passenger seat, ready so spell David off if necessary. I will be in the back, hopefully napping away in my wheelchair. This will be kind of a trial run for upcomping road trips, a chance to see how it all works. I'm happy enough in the back; there are windows to see out of and the air conditioning works just fine.

I will see all of my children and grandchildren today. They all came out for Kate's party, to celebrate her marriage. I've even bought gifts for the kids. It should be a fun day. The only possibility for distress will be the presence of my ex-wife. I'm hoping David and Shelby will protect me from her, from her false sincerity, from her pious pity. When I needed her care, she wasn't there. I certainly don't need fake caring from her now.

Friday, 6 July 2018

Emotional Trainwreck Am I

I'm struggling with my emotions today. This happens fairly often to me these days, where I feel my emotions deeply, yet I am unable to separate the strands. Happiness is twisted up  with sorrow. Excitement is twisted up with fear. Anticipation and anxiety wraps the whole into a bundle, seemingly inseparable, lumped up in my core, threatening tears, bending me without breaking me.

Times like this are the worst. Usually they happen when something good comes into my life. I have so little to be joyful about that I fear any good thing will only be temporary, taken from me when I most have it settled within. I feel like I can't trust anything, that everything will be taken from me, just as it has been so far.

Right now the good thing happening is Shelby. So far she has fit right into my life, my lifestyle, my care, even my need for order and organisation. There has to be something wrong here. How can I trust something which seems to have worked so well, so quickly? I'm afraid she will decide that caring for me is too much, that I will have to start searching all over again. It was phenomenally difficult the first time; I doubt I could do it a second time.

My brother says I can find a cloud for every silver lining. He's right. I seem to be able to find anxiety, fear, sadness in almost every corner of my life. I've always been kind of this way, never truly trusting that I deserved anything good which might happen to me, never believing my worthiness for any upside, seeing only the lack of worth, seeing the downside, what bad thing could happen.

This whole emotional construct has been amplified by ALS. This is the worst dark cloud you can imagine. Every day I have something taken away from me. Every day this disease proves I am not worthy of any good thing. Every day this madness descends upon me in the form of pain, sorrow, almost perpetual loss. It's just too hard to deal with sometimes.

So I drink. I self-medicate. I work so hard to hide from these feelings, to chase away the clouds notwithstanding any silver linings there may be. To acknowledge what ALS has done to me is complete failure. I am not prepared to let it take hold of me, yet I am ill-prepared to do battle. There is little or no joy in this, with me so fearful of losing any joy I might find.

Thursday, 5 July 2018

Shelby Was Here

As noted yesterday, by the time we got home from shopping, I was beat. Not too beat, however, to be unable to consume a couple of  bowls of my homemade bean salad. Now, there is a risk with consuming bean salad just before bed, especially when, once in bed, you are unable to get out of bed to go to the toilet. That risk began to creep into life for me at about 7:30 AM this morning.

By creep, I really mean bubble. The bubbling and rolling in my colon forced me into wakefulness as I realized I would likely not make it until 10:30 AM before events came to a head, as it were. I worked manfully to contain the impending escape plans of the beans seeking freedom. I held on with every ALS weakened muscle I could.

Time passed. An hour, 7:30 AM becoming 8:30 AM, with the pace of my digestion ever quickeneing. More time; 8:30 AM becam 9:22 AM, at which point I could wait no longer. However, instead of releasing the hound of hell within me, I did something new and completely different. I called out for help from Shelby. She emerged through my door, still rubbing the sleep from her eyes. Since I don't wake up early, there is no need for her to do so either.

I explained the situation. Shelby quickly sprung into action. Now, before allowing me to relieve that portion of my anatomy, it was necessary to drain my bladder and remove my condom catheter. This, of course, takes time. I worked once again with all I had to contain events, not with complete success. As Shelby described it, "there's one little turd here." I could live with that.

Finally, after all other things seemingly took forever to complete, I was slung up in the air, ready to relieve myself. Relief came, pushed onward by the powerful gases released from within me.

The real thing to note here is that I was not compelled to wait for Home Care. Shelby was here. I was not compelled by time to soil myself and by bed. Shelby was here. I did not have to lay in my own mess for an hour, or perhaps hours on end. Shelby was here.

I could get used to this.

Wednesday, 4 July 2018

Again With The Exhaustion

I'm tired today. It would appear that exercises in the morning, then a doctor's visit followed by Costco in the afternoon is enough to wipe me out completely. I can feel it in my face, my arms, my core, even in my mind. I am worn through, from just the smallest amount of activity. This is what failing strength looks like.

Exercises this morning left me exhausted. Once complete, followed by breakfast, I napped in my chair for well over an hour. What finally got me going was the time it would take to get me into the van and over to the doctor's office. It was only half way there that I finally shook off the shrouds of sleep, waking myself completely.

Today Shelby did the driving, the lifting, the carrying, the pulling. All I had to do was sit in my chair, wheel around, and point now and again. Yet even within this narrow field of activity, my arms failed me. We got a hotdog at Costco, one of my favourite things to do there. I managed to eat pretty much all of it, except for the last little bite. Then my arm failed me. I had to resort to asking Shelby to help lift my arm.

Shopping at Costco was relatively easy, once again with me doing the pointing and Shelby doing the lifting. By the end of it all, however, all I could come to was that I was tired. I wanted to go home. Of course the wrapper was the final stop for drugs at Safeway. Once again I am battling, or continue to battle, a bladder infection. I'm not even sure anymore whether these things contribute to my exhaustion or whether ALS on its own is enough.

It doesn't really matter why I'm tired. I just am. That's what I have to live with.

Tuesday, 3 July 2018

I'm Discombobulated

I'm not sure what to do. I am... discombobulated. There were no crises yesterday. I had no reason to make plaintive posts on Facebook begging for help. Not once did I have to go knocking on a neighbour's door to ask for help. It was... calm, relaxed, easy, without stress.

This is, of course, the advent, the effect of having a live-in caregiver. Yesterday when I tried to put a fruit plate into the fridge, I couldn't. I did not have to drop it on the floor hoping it didn't spill, then go to a neighbour to ask for help. I simply called out to Shelby. She came and put the fruit plate in the fridge, smiling and telling me it was no problem. When I couldn't get something down or put something up, she did it.

She seems to be okay with all the million little things I am dying to have done. Yes, it's a pun. Nonetheless, my towels are all arranged the way I like them. My health care supplies are all stowed away neatly and properly. My files are getting filed. My dishes are getting properly stowed. She made breakfast for me yesterday and today, with some instruction required, which of course made me happy.

On first blush, after a day or two here, Shelby seems to be settling in nicely. She's taken up residence in her room, slowly arranging her things as she wishes. Actually I have no idea what she is doing in there; it's none of my business and not my place to look. I am very aware of the privacy needed by a young lady. I'm being careful to respect that.

Oh, she has a delightful sense of humour and enjoys a glass or two of wine with dinner. How can that be a bad thing?

Once the "honeymoon" is over, we'll see what happens then. For today, my apartment is clean, my life is calm, I can putter on what I like. I can live with that.

Monday, 2 July 2018


I'm struggling. I have some tremendous supporters, both financially and personally. Some provide direct financial support, others are here whenever I call, other pitch in however they can. Yet there are many people who have said they would like a way to pass a few bucks my way every month. These folks want to contribute, to support my efforts in writing my blog and other posts. Yet they cannot make the large contributions that some of you make.

Recently a site called Patreon was recommened to me. It allows just the kind of thing some people want, the ability to have a contribution made automatically, easily, without a lot of fuss and bother. I've added a link on m sidebar to Patreon. I want to see how it looks, if it works, if people want me to put this kind of thing on my blog site.

The reality is that I am always scrambling foir funds. Somehow things always seem to work out. This is only due to the generosity I recieve right now. I don't want to insult those who have been, and are, so kind to me. At the same time, I have to ask myself what's bettter; getting a periodic donation of $100 on an irregular basis, or trying to line up 5 people who can make a commitment to $20 a month, or perhaps 10 people who are willing to be a parton for $10 a month.

My worry is that I am sounding greedy, forever asking for money. I hate that feeling, yet it is how I now must survive. My continuing reality is a shortfall of over $500 a month. It's a hard nut to crack. It would be an impossible nut to crack without the amazing generosity I experience. So tell me, is this a good idea, or just more noise coming from the peanut gallery, with me being the main peanut?

Sunday, 1 July 2018

Changing Times

Well. This is it. This is the last day I will be living alone in my apartment. Today, at 4:30 PM, Shelby moves in. She is my new live-in caregiver. She will take up residence in my spare room, the room henceforth known as Shelby's room.

This, the addition of a live-in caregiver, will make some tremendous changes in my life. No longer will I be sending out plaintive requests on Facebook when I have a problem to solve. Making a meal should get a lot easier. I won't have to wait hours on end for help if I have a catheter problem or a midnight accident. I'll be able to lock my front door at night; I won't have to leave it open for a caregiver or EMS arrival.

Other changes will happen. I will certainly lose a level of privacy. I'll have a young lady living in my home, sharing my space. I'll have to start budgeting meals for two, purchasing groceries, sundry items, and such. Of course it will make a trip to Costco more interesting just as it will make it more expensive.

On balance, the positives far outweigh the negatives. I think I'll still be able to have the music blasting some days as I write. I think I will have the kind of help I need to maintain my limited independence. The only real issue is what I will have to do on Sunday's and holidays. Next Sunday is covered; I'm keepng CBI online until then.

Still, I'm nervous. This change is a real marker of how much help I need to keep living any sort of reasonable life. As Bob Dylan famously wrote, "The time's they are a-changin'."