Irritation And Annoyance

Home care came early today, a full 40 minutes early. It was a new person, not Micheal, my regular Home Care Aide. That early arrival cost me a precious 40 minutes of sleep, stacked up with a night where I barely slept at all. If I got a couple of hours of true sleep last night, that would be a generous count. Her early arrival annoyed me.

A lot of things annoy me these days. A lot of things irritate me these days. As my illness progresses and my body recedes I find the frustration and my inborn impatiences bubbling up to the surface much more easily. On top of that, the disease itself has increased my sensitivity to stress and decreased my tolerance levels for almost any emotional distress. It's a lot to manage, a lot to deal with.

It's understandable, this emotional deficit, the easy irritation. After all, I've lost most of my ability, agility, and freedom. I depend more and more on others, people whose lives don't always work on my schedule. Home care workers come early because that works for their schedule. While I may have a time sensitivity in terms of getting out of bed, they too have a time sensitivity in terms of other clients and other demands.

The most upsetting part for me these days is the cognitive impact. I find myself forgetting even the simplest of things these days; not Alzheimer's forgetfulness, just aging and cognitive impact of ALS. I used to carry multiple schedules around in my head. I used to be able to juggle many things at once; dates, times, locations, people, resources. Now I have trouble remembering if someone is coming for dinner or not.

Okay, perhaps it's not as bad as all that. After all, I am under a completely new kind of stress these days, a different emotional and intellectual regime. There has been regime change, and I have to get used to it. The problem is that this kind of fundamental change in body and mind takes time, time I don't have. And that irritates and annoys me too.

The Dreaded Word

What is it that makes people so afraid of using the real words for real body parts? What's wrong with saying penis, or vagina, or rectum? Almost everyone I talk to, myself included at times, uses euphemisms for what are natural body parts. Are we afraid that if we speak of them out loud, the Garden of Eden will be closed to us and people will know of their shame once again?

I was just talking to the pharmacist at the pharmacy which will be providing my condom catheters. I have already sent them the required measurements, the size of my penis in girth. Yet the woman on the phone needed to ask more questions. Her first was to "confirm the measurement of your... ah... " I couldn't stand it. I said "penis?" "Yes."

I pointed out that I had already done the measurement and called it in to someone in her department. She found the measurement and said  "It says '30', but it doesn't say 30 what." Unless I am an elephant, I am pretty sure it would be millimeters. Nonetheless she talked to her counterpart and confirmed the sizing.

Then I seized my opportunity and asked "Why did you send me five of those penis size measuring things anyway?" I could hear her ask her co-worker; "Why did you send him five of those things?" Apparently, once again, the word penis was too hard to say, let alone the word measurement. I wonder how she would have handled it if length were involved, or, if for some bizarre reason, the size of an erect penis were involved? My God, the world would grind to a stunning halt; immediately.

Euphemisms and appropriated pauses were used a few other times in the conversation as we discussed placement of urine bags and catheter tubes, along with instructions for installation. Yet not once did she say the dreaded word. Penis.

As my ALS progresses, I am becoming increasingly comfortable with my body as a thing distinct from me. It has parts. Some parts work. Some parts don't. Some parts are visible to the outside world. Other parts are not often seen, however these days a lot more people see me naked. None of it is shame worthy, not even the sexual parts. They are just parts, working or otherwise.

I'm Tired

I'm going back to bed. That is all.

** I'm finally feeling ready to write, but I want to do something different. So I am going to try doing a video entry to my blog. I am thinking about doing one of these each Monday, instead of doing a written entry. Please use the comments to tell me what you think of this idea. Thanks.

Making Snacks Is My Job

Food poisoning. Yuck. It completely knocks the crap out of you, or at least it does to me. Both literally and figuratively.

I am pretty sure that's what's been going on all week with my body. The intense feeling of a cement in the pit of my stomach, the nausea, the violent expulsions from my lower bowel, the shaking, the headaches, the weakness, not just ALS weakness but beyond that; in all of this there has been no cough, no mucus, an a very low if any fever. I've even picked out candidate but I am loathe to discuss it here, lest I be wrong and get sued.

More importantly, most of that feeling has passed, as has most of my stomach content. I still feel rough, but I am on the mend. That means today can be at least one day of my cleaning weekend. I've asked me friends to get together and help me with the deeper cleaning tasks which are simply beyond me, things like washing walls and doors, moving furniture and cleaning under it, and wiping out cupboards, all the kinds of things which you should do periodically yet I cannot do at all.

Yesterday was sort of cancelled. I sent out a weakly worded email saying I was sick and I wasn't sure what to do. Bobbi showed up regardless, working hard while I moaned away in bed. Andrea and Elizabeth came later in the day; Andrea because she didn't read my email and Elizabeth because I didn't explicitly say cancel. They worked while I continued to rest, but at least I got out of bed and had dinner with them.

Today perhaps a half a dozen people will show up during the course of the day to help with the various tasks on the list; yes, there is a list. I am, after all, a project manager. Some of them are already here, busy working while I type. My chore, about to begin shortly, is making snacks. That I can do, handily.

I am once again struck by how fortunate I am to have this group of people around me, people who care deeply about my well-being, people who don't mind doing some of the dirty work. These are the same people who like wine bottling, football games and just plain having a good time. It is a precious combination, for which I am truly grateful. Now, one to slicing fruit!

Sick Again

This is the second day running where I feel like a truck is parked inside my head backfiring, where the muscles in my lower back hurt like hell, where I am so dehydrated I feel like onion powder. You can make all the jokes you want about Man Flue and my inability to deal with what must be a cold, but it's getting worse day by day.

It's incredibly bad timing, the onset of this nasty little virus. The is my cleaning weekend, where I have asked a bunch of people over to help me clean my apartment, to do the kind of cleaning that Home Care will not do. Yet I feel completely incapable of functioning properly. Right now I am struggling simply to type.

I have to be very careful in situations like this. If this cold develops into something in my chest, it could be fatal. My immune system is already impaired and my breathing capacity is diminished thanks to ALS. An serious infection will almost certainly put me in the hospital, and could quite possible kill me.

My biggest fear is not dying. My biggest fear is that people won't come to help me, that my apartment will remain dirty. I know they don't want to catch anything from me. I don't blame them. So maybe I should postpone all of this. Maybe that's the best thing to do.

I'm Sick. Not ALS Sick.

I'm sick. No, not the ALS kind of sick. I seem to have some sort of lower intestinal bug, something causing gurgling and liquifaction deep in the pit of my gut. This, whatever it is, slammed me hard in the small hours of Thursday morning, resulting in a complete  change of linens and a complete shower when I finally made it out of bed in the morning. Yesterday I seemed fine, at least until bed time. Then the bug came back.

I took a couple of Imodium along with as sleeping pill. Plus I made a late night trip to the toilet just in case; the rumbling seemed truly sincere. By the time I was done with the toilet, the sleeping pill cut in. I can't remember anything past 11:30 PM. I saved the anguish for when I awoke this morning.

My day started with a non-productive trip to the toilet, a shower where I felt tremendously weak, and a seeming inability to make the transfer back to my bed. My HCA even had to help me dress. My head was spinning, the inside drumming as if my brain was bouncing. I was shaking, far more than my normal shaking, and my inability to use almost any muscle I had was profound.

I took a couple of Tylenol Extra Strength. At least that has taken care of my headache. But I cancelled on my exercises. Just as my HCA was putting me back to bed, Katherine arrived; she was to go shopping with me for a few bits and pieces, and then help me with some baking. So far she has spent the last few hours looking after me, making sure I was okay.

She thinks this is not a bug, but a reaction to my "cleaning weekend". I've asked my friends to come over this weekend, as they can, to help do a deep cleaning of my apartment, the kinds I can no longer do. A number have signed up, but I have to confess I high level of stress over who will be here to help. Then there was the cleaning supplies, fluids, mops, washcloths, rubber gloves, all acquired of the last couple of weeks. I want to be sure I have everything anyone could ask for.

Finally there is the food. I believe you should never ask anyone to help you unless you are prepared to feed them. They are giving their time to me. It's the least I can do to give them a meal in return. So for the last few days I have been fussing over what to cook, when to cook it, what to do about snacks, what to do about this or that or then next thing.

Perhaps Katherine is right. Perhaps I am making myself sick with the stress. Or perhaps some nasty little critter has take up residence in my tummy. Either way I was sick this morning. Add that to my normal ALS nonsense and it's not fun. I'm feeling a bit better now, but I am worried about tonight, and the way my tummy feels right now. This could be exciting.

The Worst Week Of My Life - Day 7

On the seventh day, I rested. I slept in that Saturday morning, November 24, 2012, the combined effects of emotional exhaustion and too much Scotch the night before. I'm fairly sure that there were equal amounts of both liquids, Scotch and tears, involved in the night. When I did finally awaken, it was to the sounds of people chattering and clattering in the kitchen, either making breakfast or clearing it up. What they were talking about I don't know, my hearing has been bad for years. But they were laughing too.

How could they laugh? Didn't they get it? My life had come to an end not 48 hours earlier. I wasn't dead. I had gone from the theoretical thought of my death to the reality of its imminent arrival. What right did they have to be happy?

I lay there for a minute thinking of other things. This day was the last anniversary of my marriage, at least the last one where I would be married. I was in the middle of a difficult divorce, and I had just been diagnosed as terminally ill. How would I live when I could no longer work? Did I want to work anymore? What good was a life with this kind of disease?

I lay there a bit longer, thinking of other things. I thought of my brother Peter. He had a saying. "Your going to live until you die." Eventually I would steal that part and add my own clause. "Make sure you live before you die." But right then, all I knew for sure is that I was still alive, still living, and I had a choice to make. I could get up and live, or lie there and die.

I will not say the day was easy. It wasn't. It was, however, the first step in what has now become a four year journey, a full year past my expiry date. It started with me deciding that I would live with ALS, not die from it; that I would still be me, terminally ill or not; that I was still here. So I did what I had to do. I got up. I got dressed. And I walked, a talent soon to be lost to me, out from the land of the dead and into the land of the living. Living with ALS.

The Worst Week Of My Life - Day 6

In 1972, the movie The Poseiden Adventure came out. The theme song for the movie, The Morning After", sung by Maureen McGovern, was perhaps a better song than the movie was a movie. It's opening lyrics are "There's got to be a morning after, if we can hold on through the night." That could have been my song on the morning of November 23, 2012. I had held on through the night, not sleeping all that much.

The rest of the lyrics of that song are moderately trite, alluding to metaphors and links to the movie itself, but the tune was catchy and the singing was terrific.  It won the 1972 Academy Award for Best Original Song in March 1973. I wish my morning after song could have been that successful. Nonetheless, as with the song lyrics, I awoke with at least a minimal, miniscule sense of hope that day.

The Neurologists at Foothills had called in an ALS specialist to confirm their diagnosis. They wanted to be certain, leaving me with the faint hope of a mistake, a hope that maybe it was something which they could treat, or even cure. The ALS Neurologist, a doctor doing brain research at the University campus nearby where Elizabeth worked, arrived at about 9:00 AM.

There was talk of another Nerve Conductivity test, however the doctor opted for a simple EMG, the test with the immensely long needles used to tickle your nerve endings. He was much more adept at these tests than the technician from the day before. He was also very efficient. In what seemed like a matter of moments, he stopped, looked at me, and said "I'm sorry. You have ALS."

I started crying, unable to hold back any longer. After a moment I regained my composure and said "At least it's a relief to know for sure." We talked for a moment. I asked him about various kinds of ALS and if there was any chance of a different diagnosis in the future. He said "You have plain old, ordinary, run of the mill ALS. Sorry."

Then he gave me the best piece of advice anyone ever receiving this diagnosis could get. "If there's anything you want to do, do it sooner rather than later." I've taken that advice for the last four years, doing what I wanted as soon and as often as I could. My limitations today would have prevented me from doing much of what I did a couple of years ago.

As we walked back to my hospital room, he said "There's no sense in us keeping you for the weekend. There's nothing we can do for you here." And with that, I was released from the hospital. My friend Bobbi happened to arrive for a visit just then. She helped me get ready to go. I had another tearful meltdown, crying and declaring "I don't want to die." I still feel that way.

Dion came to pick me up. We were headed for the 4,000 square foot log "cabin" we had rented for the weekend. Most of my group of friends were there for Friday night, as well as my brother, Peter. As each of them arrived, I took them aside for a moment to tell them about my diagnosis. I wanted to avoid whispered questions and answer all night, and all weekend. Just get it out there and deal with it.

As the evening wore on and the emotions set in, there were tears, a great many tears, so many that my friend Mike George refers to that Friday as "the night of crying". He's right. It was. On the plus side, by the next day there were no more tears to be had. I went to bed that night thinking that my life was ending. I was to wake up in the morning thinking it was just another day in what had been, so far, an interesting life. It's like the Chinese curse. "May you live in interesting times".

There is always a morning after. There's got to be a morning after. Otherwise you're dead. I wasn't dead yet. A part of me was, but not all of me. I was going to die from ALS. I had to live with it until then.

The Worst Week Of My Life - Day 5

Thursday. November 22. 2012.

Thursday, Thursday, Thursday. I only remember three significant things from that fateful day. One in the morning. One at midday. And one in the aftermath.

I remember standing beside the window in the hospital room, there on the fifth floor, in the Neurology ward. I had eaten breakfast. Nothing was happening that morning. So I stood and looked out the window, picking out my apartment from the cluster of rooftops in the distance. I was trying to figure out where mine was, specifically in the building, by looking at the roof line and trees. I was really just staring, wondering what was happening to me.

Then it was lunch time. I called Dion and asked him to raid my fridge, to take out the food that mght be going bad, since I hadn't been there all week. The Neurologist was talking about keeping me in over the weekend. I argued against that. After all, I had a cabin booked for the weekend with about a dozen or more of my friends. It was the celebration of the last anniversary of my married life. It was to become something very different.

David came to visit me. Elizabeth had a gap in her work schedule so she came too. It was at about 2:00 PM when the Neurologist showed up in my room and said she had to speak with me. She looked at David and Elizabeth, and I said they should stay. I knew I would likely need someone around me in a few minutes, but not why. The Neurologist said "We think you have ALS."

I will never forget that sentence, the speaking of it, the place of it, the people there with me. David slumped against the wall. Elizabeth sat in the chair, emotionless. I switched into "fact mode", that place where my feelings are all shoved aside so I can deal with the issue at hand, even if it was my issue.

"How long?"

"We think about 36 months."

There was a lot of other discussion about what would happen next, about the ALS Clinic, about the contact person who would reach out to me. I asked a few more pointless questions, then the big one.

"Is there a chance you could be wrong?"

"There is always a chance of a mistake, but it's not likely."

"Have you been wrong before?"

"No. Not yet."

Shock set in. Faced with the certainty of progression and the likelihood of death within 36 months, I just sat and thought for a bit. David and Elizabeth both had to leave, to go back to their real world work and lives. I sat alone, in my room, thinking about what I had to do. There were calls to make. I had to take a few more days off work to go to BC and tell my Mom, Ray, and my kids. Kate was in Toronto; I would have to phone her.

Then I did something perhaps unwise. As evening set in, I called my ex-wife to let her know. I wanted her to know before the kids, in case one of them came to her for emotional support. It was not a great call. When I told her I had ALS, she responded by saying "You sound like you've been drinking." If I had, would that have made the news any different, any less tragic? I told her this would likely change our divorce and financial settlement. She said "I don't understand." Of course she didn't, she didn't want to.

She did make one attempt, although perhaps less than sincere. She said "Do you want to call off the divorce and come home?" I said no, knowing that going back to her and that house would simply make things worse, not better. Her closing words were, "Then good luck, and good bye." Click.

Those final words cinched the deal. I knew I was done. I was headed from the peak of my life to the bowels of disaster. My life had changed forever. I had ALS.

The Worst Week Of My Life - Day 4

I've heard war described as hours and hours of boredom followed by moments of incredible terror and panic. I wouldn't go that far, but Wednesday, November 21, 2012 had that kind of feel to it. Boredom, nothing to do. Then the worst kinds of tests you could ever imagine. Then more boredom. Thank goodness I managed to get Dion to smuggle in a bottle of Scotch for me.

Most of Wednesday morning was spent laying around doing nothing. The Neurology team was trying to get me in for Nerve Conductivity tests and an EMG. They were waiting for a specialist, a Senior Neurologist, to be available for the tests. Unfortunately that was not to be. Instead they ended up with a very qualified technician, but it meant the results would have to be interpreted by the resident Neurologist. It's not a real issue, but I have figured out over time is that they wanted an ALS Neurologist to do the test, not a regular Neurologist.

That would have to wait until Friday morning. For Wednesday, the technician would have to torture me. Torture is what I mean. This is not joke. For the Nerve Conductivity Test, they attach nodes to the top and bottom of the nerve range in question. For me, this meant electrical nodes on my thighs and ankles. Then, nodes in place, they shock you from the top to see how long it takes for the electricity to get to the bottom.

These shocks are highly localized. I'm not sure how they do it, but they were shocking my legs. Therefore the muscles in my legs responded, but not the muscles in my arms, at least not directly. The pain from these electrical shocks caused my upper body to tense, but the real action was from my waist down. There my muscles contracted like there was no tomorrow. My legs jumped and cramped, suddenly immobilized by the shock. My rear end sucked up all surrounding sheets in its mad rush to close faster than a retail store at end of day on Christmas Eve. Skid marks? I left a semi-trailer sized set of tracks on those sheets.

Then came the slightly less painful test, but certainly not an enjoyable test; the EMG. The Electromyography test is where they take long needles and stick them into your muscles. These needles, at least the ones I was enjoying, are used stimulate the ends of your motor nerves, to see if they will respond. The needle itself sends a signal to a device which converts the contact to a sound, as well as plotting it on a graph. The technician had to wiggle the needle a bit to find the ends of the respective nerves. This was a very long, skinny needle; shoved into my thigh, being wiggled around to find a nerve ending. I now realized why they wanted a special Neurologist to do this. The technician spent a lot of time wigging that needle, in about 10 different locations.

These tests lasted about a week. Yet when I came out of the shock and scramble of it all, I noticed the clock had only advance by about 90 minutes. I sat up and noticed what my rear end had done to the sheets on the testing cot. I was embarrassed by the stains, so much so that I stripped the bed while nobody was looking and stuffed the sheets into the dirty linens bin. It has since occurred to me that this must happen a lot, that my response to being electrocuted may not have been all that unusual. Regardless, I will never forget that pain.

Once back in my room, nothing happened. I waited. People visited. I looked out the window at the roof of my condo. And, as night fell, I even managed to sneak a glass of Scotch. But I still had no answers.

The Worst Week Of My Life - Day 3

It's a bit difficult for me to write today. In part it is my own fault. We had a wine bottling party last night. Wine is the essential ingredient in that kind of party. Then I stayed up after everyone left, finishing off the leftovers and, more importantly, settling down after a busy day. The other part is the topic. Writing about that week is hard, emotional.

On Tuesday, November November 20, 2012, I didn't see the sun when I woke up. I was in a hospital bed, deep in the bowels of the ER at Foothills Hospital. I was not able to sit in my chair, enjoying my coffee while watching the birds in my tree. I was given an ER hospital breakfast along with a brown liquid which may or may not have had actual coffee in it. Then it all started.

You need to be wary when Neurologists arrive at your bedside in clusters. I was just laying there, minding my own business, waiting for something to happen when it did. Four Neurologists, including the head of the hospital Neurology unit, showed up beside my bed. The asked me questions, lots of questions, then asked me to take off my pants. I complied.

This was the first time I had been able to show someone fasiculations in my leg. As they doctors were poking and inspecting, they began. I turned to the Head Neurologist and said "What is that? Why are my legs doing that? It seems to happen mostly when I am tired." I still remember the urgency and distress in my voice, but I cannot seem to recall her response. I remember her talking about X-Rays and an MRI. I remember her talking about more blood tests. And then she said "We are going to admit you."

I had not yet seen the sunshine yet the day was getting darker by the minute. I had more visitors. Someone, perhaps Anisa, Dion, or Elizabeth, brought me a Timmies breakfast sandwich and a coffee. I was taken for X-rays, my back I think. I was taken for a full body MRI, and more blood tests. Then, finally, I was taken out of the ER and up to a room in Neurology. Ironically, I could see the roof of my condo building from my hospital room, but it might just as well have been on another planet. I was trapped.

And I still had not heard those three letters which would change my life, permanently. Those letters had not even entered my mind. ALS was present with me. I just didn't know it yet.

The Worst Week Of My Life - Day 2

Monday, November 19, 2012 broke as most November days do here in Calgary, partially cloudy and cold. There was snow on the ground, as you might expect for this time of year, and a chill wind was gusting from the northwest. I got up as I did most days, at 7:30 AM, had my light breakfast and a cup of coffee, and headed off to work.

The day at work was uneventful, a normal kind of day for me. Meetings, follow-ups, writing plans and doing paperwork for the two projects I had underway at the CBE. One of the directors once asked me what I did all day. I told him I came in each day and nudged these projects towards the edge of a cliff. When they fell off, I was done. It was another day of nudging.

It was after work where the real fun began. Perhaps that's too light-hearted. There was no fun in this at all. I went straight from work to the Foothills Hospital ER. I checked in and explained that I had fallen on Saturday and was having trouble standing up and walking. The Triage Nurse asked me to wait, and I did, for four hours. I sat there doing little to nothing, making the odd phone call, thinking about how much it was costing to keep my truck parked there.

After four hours, I finally became a bit upset. I know my condition was not an emergency, but surely something could be done. So I went back to the Triage Nurse again, this time a different one, and explained more fully my symptoms. As I explained my slow loss of muscle tone in my legs, my increasing difficulty with stairs and steps, my constant risk of falling, something changed in her demeanor. She looked at me intensely and said "We're going to get you in right away."

And so it began.

The first thing to happen was more waiting, but at least I was in the ER. Then a young ER doctor interviewed me, immediately ordering blood tests. He also mentioned that he was going to ask for a Neurology consult, but it might take a couple of hours. I went and had blood drained from my arm. I should have been suspicious right then, because no sooner than I got back to my bed the on call Neurologist showed up. It was fast, too fast.

We had a long discussion, talking about symptoms and possible causes. Things like Guillain-Barre syndrome or other possible nerve damaging things came up. I mentioned my accident with the motor but he seemed to dismiss that fairly quickly. No pain. Once again I should have been suspicious, but ALS never even came close to entering my thoughts.

The Neurologist said he wanted to keep me for an MRI, but it wasn't likely to happen that night. Would I mind waiting "in chairs" for a while? "In Chairs" is an area in the ER filled with La-Z-Boy type reclining chairs. This was to be my home for much of the night. I called a few people to let them know what was happening. Dion came to take my truck home. Anisa came to bring me some snacks. Others came, and went. I fell asleep.

In the wee small hours of the night, I was awoken and once again asked to move to a bed in the ER. What I now know is they were getting me ready for the morning Neurology shift. All I knew then was I had a bed, and then morning was coming soon. And I still didn't know what was going on with my legs.

The Worst Week Of My Life - Day 1

November 18, 2012 was a Sunday. It was, as this coming Sunday will be, the Division Finals for the CFL. I had arranged for my new friend, Bobbi, to come over and watch the game with me. I had made snacks, set out some wine, and was ready for a good day. Little did I know that it was to be the last good day of my life, or rather of my old life. It was my last day of freedom from ALS.

I had fallen the day before, even with my cane in hand and while gripping the door handle of my truck. It was in the Costco parking lot, the one I still go to today. I can even point out the spot where I was parked when it happened. The fall itself was fairly dramatic, a complete backwards spiral and collapse. People came running to help, but I was fine. Except that I wasn't. It was that moment when I decided I would go into the ER at Foothills Hospital the following Monday.

My doctor and I had been trying for a while to get me into the Neurology Clinic, and into the Back Clinic. There were the usual Canadian medical system waits for these things. Both my doctor and I knew there was something seriously wrong with me. I was still convinced it was a back problem; he was unsure and said nothing. He wanted me to see a specialist. I think he had a pretty good idea of what was wrong, but didn't want to say anything lest he was wrong.

I had asked him just a few days before if there was any way to speed up the process. He said "Go into the emergency ward, fall on the floor, scream in pain and pee your pants. They will see you immediately. They have to." The "pee your pants" parts was meant as humour. The rest was completely serious. The main lesson I drew from this is that I had to go into the ER.

So Sunday, November 18, 2014 came. Bobbi came over. We had a great day, watching football, talking, enjoying wine. Then she went home, and thus ended the last day of my normal life. The next day would bring the beginning of a process which would end in the destruction of every hope and dream I had had for my peak living years. It's sad to think that the worst week of my life started out so well.

I was only 57 and four months years old. I was in the peak of my career. I had left behind a bad marriage and was in my first real steps of starting a new life, a life with real freedom and potential. And, unknown to me, it would all come to a crashing halt, starting with what would be my fateful visit to the ER the following day.

The Walking Dead

One of the ultimate ironies in my life is that I watch The Walking Dead. It's a show where even dead people can get up and walk. I can't, and I'm not dead yet. I realize it is a fantasy show based on a comic book. I know that once I am dead I will stay that way. Yet I wonder, in the mythology of the show, what would happen to me if I died with the zombie virus? Would I reanimate, able to walk once again?

Speaking of mythology, Christmas is coming soon. All I want for Christmas is to be able to walk once again. I want to be able to sit down and stand up from my own toilet. I want to be able to move from one room to another without using slings and wheelchairs and lifts. I want to go outside, standing upright, and feel tall once again, be vertical instead of sitting.

I doubt that this can happen by Christmas. It would take a true, inexplicable miracle. This may be the season when Christians believe in miraculous gifts, but I am fairly certain the ability to walk once again will never come to me, at least not this year. The problem is I don't have many years left, perhaps one at best.

This is the sense I get from my arms. They are failing fast, like my legs did once the process of atrophy truly got underway. My left arm is substantially weakened; I am having ever more trouble with it. My right side will follow, slowly, but soon enough. This will be the last Christmas where I will be able to drive, the last Christmas where I will be able to transfer at all, and quite possibly the last Christmas where I will be able to feed myself a Christmas dinner.

I need a miracle. Even zombies get to feed themselves, albeit in a raging, uncontrollable thirst for living flesh. I'm not so much into that. All I want for Christmas is a treatment, maybe even a cure, for ALS.

Always Look On The Bright Side Of Life

So far this morning I've managed to drop two oranges and spill a cup of coffee. Yes, it was two different oranges. No, I did not spill the whole cup of coffee, just about a quarter of it, enough to call for a clean up on Aisle 6. I suppose I shouldn't complain. I picked up the oranges with my grabby stick and cleaned up the coffee with a nearby towel. It could have been worse. The oranges could have rolled into a place where I couldn't reach them. I could have spilled the whole cup of coffee.

There is always a bright side to these things, although I am at a loss to find it a great many days. For example, today I am having a lot of pain in my left shoulder and weakness on my left side from my neck right down to my fingers. My left thumb is having trouble with the spacebar. It's not too much trouble; I am still typing. But my fingers ache and my shoulder hurts and my neck is sore. And I am tired. So where is the bright side?

I could say that the bright side is that I am still alive, and doing quite well. That's true. Most PALS who were diagnosed at the same time as me are dead now, some having gone in months, others making it to the three year mark. That's the median. Half of PALS die within 36 months of diagnosis. I am a full year past that in another week. Is that the bright side?

You see, I'm not so sure. Quality of life has come to mean a great deal to me these days. I am becoming increasingly willing to stay at home, to stay in bed, to be alone. Everything tires me out; I'm too tired to even have sex, were that opportunity even available. I am unable to complete any task without taking a rest, or giving it up altogether, leaving it half done until tomorrow. Is living like this really the bright side?

My two big goals today are to re-package a large package of ground beef into smaller pieces, and to boil some eggs before they expire. I got the ground beef on sale in the larger pack, but I have a Food Saver to help with the downsizing. These eggs have a best before date of October 29th, a full two weeks ago. If I boil them, they will keep in the fridge a bit longer. Maybe I will make Devilled Eggs for the football game this Sunday.

These low ambitions are my focus for today. That and my daughter Kate is coming for dinner. I am making Chili in Bread Bowls. It's a simple meal, but healthy and filling. I made the chili a couple of days ago, so I don't have to do that. I just have to heat it up, empty the bread bowl, and fill it with chili. And that, these few tasks, are what I now consider a full day. I'm still looking for the bright side.

Winter Is Coming

My goodness the weather here in Calgary is miserable today. You would think we were in Vancouver with the drizzle creeping into everything and a temperature just slightly above freezing. All we need is that bitter wind which blows off the winter sea to make it truly unlike Calgary. It's supposed to be snow, but we are a couple of degrees too high. Just a few miles west, closer to the mountains, snow fell in abundance. Here, rain.

Weather affects my moods. One of the great things about Calgary is the number of clear and sunny days we get here, all year round. It is the sunniest city in Canada, by any measure. It has more sunny days and more hours of sun versus any other city in the country. Yet a day like today, rare as they are, impacts me directly, dragging down my mood and attitude.

I look out the window at a grey, sullen sky. I see the trees drooping with moisture, droplets dripping from needles or the last desperate leaves still clinging to branches. The roads and sidewalks are soaked, passing traffic squishing and splashing along its way. The rain, too heavy to be a mist and too light to be true falling rain, sort of settles its way onto everything.

Fortunately this will pass. Already the roads are drying, both from the traffic moving over them, and the air above them, despite a relative humidity of nearly 100%. That's high, reflecting the rain and residual moisture in the air, moisture which will bring us fog as night settles in. Dampness, clinging cold, misery.

Things look better for tomorrow. The sun will peek through the clouds. The rain will pass, or perhaps change over to snow. It will be cold, but it should be. It's late November in Calgary. Winter is coming.

The Worst Way To Die

I'm having trouble writing today. I'm shaking badly. My hope is that this will settle down shortly and I can move forward with my day. I've been waiting a couple of hours now; soon, please, soon.

Today as I lay in bed, I was watching the fasiculations in my left arm ripple the muscles up and down underneath my skin. I made no effort to stop them; there is no point. I have little or no control over them regardless. They start when they start and they stop when they stop. The only time I don't really see them is when I am actually using my muscles for something, for example, typing. When my arms are at rest, I get fasiculations. That's it.

The other day I was reading an online article in Vice Magazine about the best way to die. The article immediately took suicide off the table. The author was focusing on natural death. Before getting into his rather ridiculous list of the ways we most commonly die, he took the time to note the worst way to die. He referenced an earlier Vice article covering that subject, with the conclusion that the worst way to die is slowly, with something that leaves you in hospital care for your final days.

That's ALS. I get to live while I watch my muscles slowly succumb to the loss of motor neurons. I get to experience the pain of muscle cramps over and over again. I get to suffer through the shaking, time after time. I get to do this for years on end, without redemption or relief. The only time I truly escape this disease is when I sleep. Perhaps that's why I sleep so much.

Some would suggest that the amount I sleep is indicative of depression. Well, I sure as shit have something to be depressed about. However most PALS go through this constant exhaustion, this constant need for sleep. Most of us are worn out completely by this disease. So for entertainment, we stay in bed and watch our fasiculations, wonder about our shaking, and hope time goes by quickly.

I am not depressed. I have ALS. That's why I stay in bed. The effort of getting out of bed takes so much out of me that, once complete, I simply want to go back to bed. At least there I can watch my arm muscles jerk under my skin. At least there I can close my eyes and try to calm the shaking. At least there I can rest, perhaps sleep, and for a moment at least I can pretend I am not dying the worst way possible.

FootBall Day

It's a CFL Football day today, the Quarter Finals for the Canadian game. Our league is so much smaller than the NFL, but the game is much faster, and much more exciting in my opinion. With a larger field and larger ball, the game requires speed and the ability to change plans suddenly. With only 3 downs, as opposed to the NFL 4 down game, it is a much more offensive game with lots of passing.

Today we have both the East and West Quarter finals. Yet, in the oddity of a nine team league, today we have the western team of Edmonton playing the eastern team of Hamilton for the Eastern division. This is due to those nine teams. In years past, with a 5 and 4 split, west to east, it was possible for a very poor team in one division to get to the playoffs while a very good team in the other division might miss the playoffs. So they instituted the "crossover" rule.

The crossover has only happened a few times over the years, but it makes for some interesting possibilities. For example, Edmonton is the crossover team this year. It had a more winning record than either of the bottom two teams in the east. Calgary, on the other hand, is the winningest team in the CFL this year. If Edmonton wins against Hamilton this week, and against Ottawa next week, it would win the Eastern Division. If Calgary, who gets this week off because they won the West, beats the winner of today's game between BC and Winnipeg, we could see an All Alberta Grey Cup, something never before seen in CFL history.

While those of us in Alberta would love this, it would definitely displease the Governors of the CFL. Canadians are notoriously parochial. It is almost a certainty that eastern Canada would tune out an all Alberta Grey Cup, even though it will be played in Toronto. I know who the governors are rooting for.

Then there is me. I went to my first BC Lions game at aged 9, with my Uncle Peter. I have been a lifelong BC fan, having lived most of my life within an hour's drive of the stadiums, both the old Empire Stadium and the new Stadium at BC Place. I even had seasons tickets for a few years.

So today is a football day. Beer, snacks, chili for dinner. I can take it!

Is This Enough?

I don't feel like writing today.

It's a sign of the slump I am in right now, an almost perpetual slump. The next 10 days will be rough, saddening me as I approach the anniversary of my diagnosis. Four years ago, about this time, I was talking to my GP about getting into the neurology clinic. It was a long wait and neither of us thought I had a lot of time to wait. We were both right and wrong.

I don't feel like writing today.

This is when the discipline cuts in, when I realize that there is more of my tale yet to be told, more of my story yet to be captured. Four years ago at this time I wouldn't have believed you if you had told me I had a blog to write, a blog with almost 1,500 entries, a blog with half a million page views, a blog followed by people around the world. People want to read my writing. I must write.

I don't feel like writing today.

I spent most of the day in bed, dozing on and off, thinking thoughts which should not be thought, asking myself questions which I cannot answer. I've not even put on pants today. I am unmotivated to cook, but that's okay. I have plenty of leftovers in the fridge. I will eat, sullenly, forced by physical requirement. Or maybe not.

I don't feel like writing today.

But I did. Is this enough?

Remembrance Day

My paternal Great Grandfather - Adam McBride
My paternal Grandfather - Adam McBride
My paternal Uncle - R. Adam McBride
My Father - Richard T. McBride
My Brother - R. Adam McBride
My Brother - Matthew G. McBride
My Nephew - Richard T. A. McBride

My maternal Grandfather - C. Robert Keller

These are the names I remember on Remembrance Day. These are the men I knew, or knew of through them. These are the ones in my family who served their country proudly and, in all cases, came home after their wars to build a life, a society, a community, a family. These are the men for whom service was the simple act of following a long family tradition.

My name is not on that list. I did not serve. As an avowed pacifist, I am not ashamed of my decision to not join a branch of the Canadian military service. If I had joined up, though, it would most likely have been into the Navy, as did my Dad and brothers.

My Great Grandfather and both of my Grandfathers fought in the First World War, the war to end all wars. My Uncle Adam lied about his age, signed up at 15, and went off to fight in the Second World War. My Dad, along with my Uncle Doug Wessel, the man who ultimately married my Aunt Diane, both fought in the Korean War, a war so political it wasn't even called a war. It was technically a UN Police Action. Yet still men died, serving as their governments directed them.

I admire these men, their courage and bravery in the face of terrifying battle. I have a copy of my Grandfather Keller's remembrances of the WWI, written long after the war, a collection of memories, some cruel, some funny, some ironic, all of them demonstrating once again the arbitrariness of life and death, war or no. My Uncle Adam told a great many stories, so many we often wondered which were true and which were exaggerations, which really happen to him and which he lifted from the lives of others.

My Dad rarely spoke of his war experiences, except to tell the funny stories or to reminisce about his time as a young man on leave in Tokyo. The one story he did tell me was of the fight in Inchon Harbour, South Korea. He was on a Canadian destroyer, well into the bay. There was an oil installation on shore going up in flames, spilling a slick on the water. A Korean solder was desperately swimming away from the now burning slick. My Dad and a group of sailors on deck started making bets as to whether or not he would get away.

When Dad was telling me this story, he stopped at this point. I asked him what happened. My Dad, in a dull and unemotional voice said "He died." No additional comment. Nothing else to add. He did not say which way he had bet, nor express any sympathy for that ugly death. I wondered what his feelings were about this, but after a moment of silence my Dad changed the subject, moving on to fishing or hunting or something else in the current world, no longer interested in the past.

War is an ugly business, made uglier by modern technology. Yet it seems to be our most impressive skill, this killing of one another. We have made war since mankind began. We are currently at war, against the ideas of ISIS and the war lords of Afghanistan. Young men and women will surrender their lives at the behest of old men sitting in rooms far away from their sacrifice. I wonder how long wars would last if we only sent old men to do the fighting, leaving the young men to build lives, futures, and families without the emotional damage of battle.

Or perhaps we can live with the hope that one day, one future day, war will be just a memory. Remembrance Day will be a reminder against war, rather than a memorial to those who died in war.

Predicting Good Things

We are having the most incredible month of November so far here in Calgary. Today was another warm, sunny day. Clear skies of powder blue reached endlessly to some far and distant horizon, wisps of cotton batten clouds slowly sliding forever eastwards, pushed by the unseen gentle winds higher in the sky. Here below the breezes remind me of being onboard ship, sailing the open waters of Georgia Strait, a light westerly running down, having been squeezed through the channels and passes of the Discovery Islands.

This will end, all too soon. This is, of course, southwest Alberta, an area known for its rapid changes in weather. Already the days have started to cool and the nights flitter against the freezing mark. Next week the forecast calls for snow; even the daytime temperatures will be near zero. It teaches us to enjoy today's weather, never knowing for certain what tomorrow will bring.

My life is like this too. I have no certainty about tomorrow, let alone a few weeks or months from now. I am compelled by circumstance and position to enjoy today. This is a good thing, this learning to live for the moment, to live for right now. It may not be ALS that takes me. I could get hit by a car while crossing the street in my wheelchair. I might have a heart attack tonight in my sleep.

This doesn't free me from thinking about tomorrow. I looked at the weather forecast for next week; I must be thinking about it. But I don't know for sure if that forecast is accurate. I had a weather forecaster say to me once that he could usually get the next few days right and after that it was a bit of a crap shoot. So why not predict nice whether whenever possible?

If I'm going to worry about tomorrow, why not predict good things? There is enough going on with my body to give me plenty of bad things to worry about. I can worry about losing my strength, my mobility, my breathing. I can live in fear of losing my independence, even my home. Those things might happen; some of them will most certainly happen. But like that weather forecaster, everything after next week is a bit of a crap shoot. I might as well predict good things whenever I can.

Not A Great Morning

It's been a difficult start to my day this morning. It began with the transfer to my commode chair; not so much the transfer itself but what that transfer signaled to my lower colon. Freedom! Basically the commode chair is a toilet seat on wheels, so it is no surprise that sitting on a toilet seat should stimulate my bottom end. I have learned to control that process, in most cases. This morning it caught me by surprise. I managed to control the great escape, but some of the inmates got free, there, while I was sitting on the commode chair next to my bed.

Fortunately this incident was contained by my underwear; there was no spillage. I managed to get into the bathroom and positioned over the toilet before anything else bad happened. Unfortunately I was then forced to remove the enclosing article of clothing. Somehow I managed to do this without smearing myself. Unfortunately, once free of my body, the contained articles continued their path to escape, landing directly in front of me on the floor.

I stopped everything and cleaned up the mess, including rinsing my underwear and the cloth I used to wipe myself down. Then, after a brief and unsuccessful continued visit to the throne, I decided to shower. This went well, although my bladder was acting up while showering. No worry; it all goes down the same drain. Once finished, I returned to my bed so my Home Care Aide could apply the needed creams and powders in the areas required.

It was during this process that my bladder once again sprang to life. I was ready. I knew this might happen. I grabbed my jug and aimed, all while laying on my back, my belly blocking my view. I got it right, mostly. The part I didn't get right soaked my bath towel beneath me, leaving me damp in a couple of places. My HCA got a washcloth and towel, and cleaned me up.

The rest of my morning routine was without further incident. I dressed with no further need for release. I did my exercises, as did my HCA. I got out of the bedroom and into the kitchen to make coffee. What I have not mentioned is that I am out of Keureg pods, so I have reverted to using my French Press for coffee. This requires that I boil water in the kettle.

I grabbed the kettle and realized is was almost empty. I pulled the lid off. At the same time my hand holding the handle spasmodically released, the kettle slipping and falling onto my lap before I could re-establish my grip. The resulting splash soaked my shirt and pants... and my groin once again. Right now I am hoping that the air dry process is sufficient.

Please note that I blame none of this on the election of Donald Trump. I have no doubt that this is simply a result of ALS attacking various parts of my body. The fact that I had a shitty, pissy, soaking wet morning should in no way imply any opinion on my part with respect to politics in the USA. It couldn't, could it?

Isolation

I struggle with aloneness these days. Not loneliness, although there is a bit of that tossed in. My struggle is with a sense of being alone no matter what I do, of isolation. It's important to note that I am not actually alone all that much. It is a rare day where I don't have a visitor, or find myself going out to something social. Certainly I don't get out much anymore, but my friends increasingly bring that socialness to me, as does my daughter Kate.

The struggle that I have, that sense of isolation, is not all that uncommon for people in my position, people dying from slow, debilitating illness. Whether it is true or not, I and many others like me, live with the constant feeling that nobody gets it, that nobody really understands what it is like to go through this illness. You see, there is nobody on earth who can say "I had ALS once. I understand." They're all dead.

There are those who say they have ALS now, and are still living with it. The problem is that everybody experiences this disease in a slightly different way. There are no typical PALS; we are all unique. Part of that uniqueness is a function of how ALS works within us. Part of that uniqueness is our mere humanity. There is nobody quite like me; there is no disease quite like mine.

On top of the psychological sense of isolation and aloneness, there is the reality of what this disease does physically. Each day it limits me more and more. Each day it increasingly difficult to share in the human experience. It's too hard to do so many things. Going to the mall takes effort, too much effort. Transferring to my power chair takes effort, too much effort. And all along, there is nobody there to share this burden, nobody to encourage me, to help me understand, to hold my hand along the way.

The thing is, even with somebody there to give my that physical comforting, to take away the physical side of loneliness, there will always be the sense of aloneness in this disease. It is always with me, in a crowd, with a special person, with family, with anyone. No matter what happens, my disease happens to me alone.

Of course this is true for everyone. Everyone experiences their own life, through their own lens, alone. Everyone dies, and everyone experiences death individually. My problem is not dying alone, it's living alone, living through this illness alone, even when I am not alone. I live perpetually with the feeling that nobody gets it. That's what the aloneness really is. That's the isolation.

Toenails

I tried cutting my toenails this morning; it was your basic shit show. First of all, I had a heck of a time lifting my foot up onto my knee so I could see my toes. That's also when I got to see just how purple my feet can get; deep, deep purple. I managed to cut half the toenail on my right big toe when I lost my grip on my foot and it slipped off my leg, banging its way down to the floor.

Fortunately my Home Care Aide was there to help. She is not permitted to actually clip my toenails. It is considered a medical treatment, requiring a Podiatric Nurse. To have the home care company deliver that care it would cost $50 a visit along with an initial assessment for $60. These costs are not covered by my medical insurance. AISH will cover $45 a month, but first I have to get a referral from my GP to a Podiatrist, then a letter from the Podiatrist saying my feet need this medical care. Hoop after hoop; I am tired of hoops.

So my HCA lifted my foot back up for me, at which point I tipped over backwards, my balance not sufficient to hold the nail clippers in one hand and grip my foot in the other hand. At that point my HCA took pity on me and helped with the general process, notwithstanding the regulations. I tried; I was not completely successful.

It's these little kinds of things which can be most frustrating; not being able to cut my toenails, not being able to generate a decent sneeze, not being able to lift my leg up and hold it on my knee. My toenails ended up trimmed this morning, a team effort. Still, what happens next time? Sooner or later this will be completely beyond me. At that point I will just have to jump through the hoops for what will then be truly necessary health care on my feet. Or I could just have them amputated. It's not like they are doing anything for me.

Starving On Wine

Yesterday my only meal was breakfast, the one that Tonny and Elizabeth made for me. Today my only meal will be dinner; I'm doing Roast Beef and Yorkshire Pudding. The only thing of real note with this is that I am not eating much else along the way. No lunch or dinner yesterday, no breakfast or lunch today. In fact my current total dietary intake today is a cup of coffee.

I'm not hungry, not at all. In fact I am having trouble compelling myself to get dinner started. The thought of food is only marginally appealing to me. I'm down to what I call "compulsive eating", where I eat small snacks or bits of food, not because I am hungry but because I feel like I really should eat something, just not a real meal.

You would think with this odd diet of hunger and then not hunger, snack and meal, that I would lose some weight. My calorie intake is certainly not all that high, until you start counting the wine I drink on a near daily basis. The problem with wine calories is that there is no real nutritional value in them. There may be calories in wine, but you can starve to death if that's all you take in.

I'm not losing weight, at least not off my belly. I am losing it elsewhere, in my arms and legs mostly, but the fat around my waistline stays with me, the least healthy place for it to be. Even my ass has lost most of its fat, or rather most of its muscle. It's just my belly that's fat, like the Michelin Tire Man, rounder and rounder as you approach my centre. I look like a limp Buddha. It's not a pretty site in the mirror.

Oh well, at least I will get some protein today, just as I did yesterday. For the moment, I have some grapes beside me to go with my coffee. I'll eat some cole slaw with dinner. I'll be okay.

Breakfast With Tonny

A few days ago my friend Tonny called to ask if he could come over to make breakfast for me today. Of course I said yes, as fast as I could. When friends do things like this for me, it has a number of positive effects. It gives me a reason to get out of bed in the morning, or at least nearly in the morning. It means I get a solid breakfast to start my day, giving me more energy. It brings them into my life at a time when I really need their company.

When Tonny showed up, he brought Elizabeth with them. I was slow in getting started, still in the bathroom when they came in. I called out, letting them know I would be out soon. Tonny told me not to hurry. He and Elizabeth got started in the kitchen right away. It's worth noting that both of them knew where everything was, what they needed and how to find it. I wonder whose kitchen this really is anymore.

By the time I was dressed and ready to start my day, Tonny and Elizabeth had prepared sausage, eggs and hash browns, with coffee and orange juice on the side. It was Dennny's at home! I enjoyed a terrific breakfast with wonderful conversation. It was a great start to my day. Then Elizabeth and I noticed that there was a CFL game with Edmonton and Toronto today, so she has stayed behind to watch the game with me.

I love this, that friends would come and see me, explicitly saying that we hadn't seen enough of each other lately. It's true. I've missed a lot of trivia lately. Others have been busy, not making it either. So Tonny made a point of coming to see me, as did Elizabeth. This extra effort means a great deal to me, truly making me feel loved and cared for. Sometimes it doesn't take a lot to make me happy. Breakfast is a great way to start.

Aching Arms

My arms hurt today, especially my left bicep. I've been having a fair bit of trouble with my arms lately, not in terms of weakness, although that is certainly happening, but in terms of aches and pains. These are not the aches and pains of aging. These are the aches and pains of what remains of my muscles working extra to make up for those which have been lost.

Consider it this way. Suppose that every day you pick up a jug of milk. Then, each day, it gets replaced with a jug that is slightly larger and slightly heavier; not enough so you notice immediately, just enough so that it's a bit heavier. Now consider that after a week or so. You might notice that your arm is hurting from picking up that increasingly heavier jug. Then after a month or so, you discover that you can't pick it up with just one hand; you need both. So now both arms are hurting from the ever increasing weight of that jug.

That's kind of what it's like for me, except instead of things getting heavier, I am losing muscle ability. The muscles remaining are working overtime to keep up, and failing constantly at their tasks. So my arms hurt. Not just today. They've been seriously bothering me for about a week now. The real problem is that it's not only my arm muscles working overtime. I have the same issue in my neck and all down my back. It's not a pain which needs medication; it's just sore enough to be annoying.

Now add to all of this that I did exercises this morning. I do Range of Motion exercises every Monday, Wednesday and Friday. These exercises are not intended to stress my muscles. In fact they are done mostly on my legs. Since I can't move my legs, the Home Care Aide does the exercise for and with me. My arm exercises I do for myself; I still have arm muscles. As such the arm exercises to tire me a bit, and do add to the muscle stress.

So here I sit, aching, sore, and tired. No wonder I want to go back to bed.

Small Appliances

It's not just the big appliances that I need for living with ALS, not just things like the wheelchair, commode chair, power wheelchair, slings, lifts and so on. There are lots of small appliances I am beginning to need more and more, the kind a great many people have in their homes, yet I have never had in mine.

The other day I was peeling potatoes. It's that time of year, time for big dinners with plenty of mashed potatoes. Except it took me a heck of a long time to peel those potatoes, and I was pretty much worn out by the end of the exercise. So I thought about it. Why do I have to do all that work? There are electric potato peelers out there. So I went out and bought one, a "Rotato" by Starfrit.

This is something I would have called an unnecessary gadget in the past, a piece of plastic junk designed to litter a counter or sit in a cupboard unused. It isn't. not for me. I've had an apple in the fridge for a week but haven't eaten it because I didn't want to put the work into peeling it. No, I'm not lazy. Well, perhaps a little. In the end, it wasn't worth it for me. Yet my little Rotato peels apples, oranges and all kinds of things. So I used it, along with my manual corer and slicer, and ended up with apple slices to eat.

Opening cans is getting pretty tough too, so a few weeks back I got one of those little can openers, the kind that sits on top of the can and rotates around it, opening it without leaving edges exposed. I don't know why I waited so long to get something like this. I suppose, once again, I saw it as an unnecessary piece of gadgetry, offering me no value, until now.

The other small appliance I purchased yesterday was a replacement for my hand mixer, the wand kind that you hold with one hand. My old one broke and I've been hand whipping for a while. I simply cannot keep it up anymore, so I bought the needed replacement. Only this time I bought one with a small chopping attachment. Chopping onions and peppers is getting to be quite a task, so I thought this might be a better option. We'll see.

I like doing a lot of my kitchen stuff by hand. I have an electric hand-held beater which rarely comes out of the cupboard. Instead I have a couple of different hand whisks and mixing spoons for various beating and blending tasks. I don't have a big mixer with bread kneading blades. Before today I didn't have any sort of a chopper or food processor. I preferred to do it by hand.

But my hands are getting weak. My arms getting weaker still. I get tired easily and can't finish the bigger jobs. The truth is that I need these small appliances just as much as I need the big ones; that is if I want to continue cooking and baking. I do. It's something I love to do. So I will take these gadgets, gone from unnecessary to probably useful, and do what I can to keep going.

Nothing Exciting

I think I complain too much. I know for some people I do. Even my daughter, Kate, on a regular basis while visiting me will ask that we change the subject so we don't have to talk about what I am going through, what the latest frustration is. It's easy for me to understand why people would get tired of hearing me talk about toilet troubles, dietary dilemmas, financial frustrations, and the general exhaustion and struggle of ALS.

Here's the problem. This blog is intended to tell the story of what it has been, or what it is like, for me to live with ALS. It is intended as a place for me to share my experiences with people who know me and don't know me, people who know about ALS and don't know about ALS. I started it as a cathartic, a way of releasing some of the pain and frustration of my daily existence. Given how hard that daily existence is becoming, there seems to be more and more to complain about, an increasingly large pool of negative experiences. It's getting hard to find the rose in amongst the thorns.

It's also the tediousness of this disease. There are only so many times I can talk about how tired I am, or how it is getting increasingly difficult to transfer into bed, or frustrating it is to keep my home clean. There's a limit to the number of ways I can tell the story of living with ALS. After that, it becomes repetitive. I've already been told that my blog repeats itself.

I guess the truth is that every situation, when drawn out long enough, goes from being a crisis to being normal, boring, tedious. Every situation must be seen though the lens of "urgent" and "important". These days ALS is certainly important in my life, but there is no sense of urgency. I'm not likely to die this week, or this month, perhaps not even this year. So there is nothing dramatic. It's just the never ending grind of a little bit more each day, and me complaining about it. No matter how much you care about me, ultimately that gets boring, a bit stale.

Being Tall

Help! I need a tall person!

There are so many times in my day these days when I cannot reach, when something I want is just above my reach, just beyond my stretch. The bowl I want is on the second shelf. The plate I want is above the fridge. The towels I want are at the back of the shelf. I can't reach these places anymore.

Being short is new to me. Before ALS, I was 6 feet tall, a decent sized man. Now, after ALS, my body length nearly the same, slightly shorter due to atrophied muscles and constant sitting. However my height is now 4.5 feet, shorter than even the shortest of my friends and family. My Mom towers over me. My kids are all way up there. Even some of the younger children who come into my life periodically are taller than I am, can reach higher than I can.

This inability to reach puts so many things into perspective. At least for much of my life, I was the tall one, the person who short people asked when they needed something from high in the cupboard. My ex-wife used to ask me all the time to get things down for her. Now I know what it feels like to have to ask when you want something which is simply too high to reach.

I do have a solution to this, to some of this anyways. I have a combination of my power chair, which will lift up about a foot or so, and my "grabby stick", one of those tools for reaching and grabbing things. This solution is useful when I can reach the cupboards. The problem is that kitchen cupboards  are set well back from the counter edge, meaning I often cannot get close enough to reach what I want. Then it is a combination of grabby stick and letting things fall into my hands, with any luck.

There is also my hand held, plastic colander. With this, and the grabby stick, I can pull things to the edge of the shelf and let them fall safely into the colander. mostly. Sometimes I miss. Other times the flexibility of the colander handle give things a bit of a bounce and out they go. So this is not without its risk.

The simplest solution would be to keep a tall person on hand at all times. It's not realistic, just simple. Alternative I could move everything down to lower shelves. But that would require getting rid of a great many things I use on a regular basis, like pots and pans and bowls and my colander. Or I could just start storing things in boxes on the floor of my spare room. Unfortunately that would remind me of the home I used to share with my ex-wife, every space available covered with boxes. In her case, ti was books. I my case it would be pots and pans.

Nope. I'm pretty much where I have to be. When I really need help, I can call a tall person. Otherwise I have to make do with the tools at hand. And I have to get used to dropping things, and breaking things every once in a while.