The best thing I can say about the decline in my arm strength in the last couple of weeks is that is has been remarkable. My legs went like this, going along with seemingly no change then a sudden drop in ability or capability. One week I could walk a block or two, the next week I would be unable to make it across a Canadian Tire parking lot.
Over the last week or so, I seem to have almost completely lost the ability to lift myself free of my wheelchair. It's almost as if my arms have gotten shorter. I can lock them and lift, but the clearance is less and less. It's gotten to the point where I cannot reasonably lift and transfer myself from my wheelchair to any bed at all, let along a high hotel monstrosity. I just cannot seem to lift off.
This is all a part of the continuing, invisible decline that I am going through right now. When people are with me a lot, they see it in the exhaustion and inability. For those who are just casual observers, they would not see much of a change, if any at all. For those who help me, they see the slow way I deal with hallways in hotels and sidewalks outside, the difficulty I have with lifting even smaller things, my complete inability to lift myself.
This part of my decline is so insidious that I appear unchanged; I still hear the occasional "other than the wheelchair" comment, although they are getting fewer and farther between. When it is finally noticeable, people will ask what happened, thinking I was doing so well. I am not doing well. My arms hurt constantly and they are increasingly weaker and weaker.
I am pretty sure I have reached the point where solo travel is no longer a possibility; we'll have to see. I am pretty sure that the boundaries of ALS are catching up with my boundless desire to live independently. I'm not giving up, not by any means. I am being forced, arm wrestled, into the acknowledgement of my condition. I can still do stuff, lots of stuff. It's just getting to another, more limited place.
The odd thing is that my arms are still probably stronger than a great many people I know. I can still drive, easily. I can still twist the top of a screw cap beer bottle where others cannot. I can still type. I'm not done yet.
Wednesday, 7 January 2015
Tuesday, 6 January 2015
Desparately Longing
"Have you ever found yourself surrounded by people somehow desperately longing for some sort of human connection? Knowing that your life is full of friends and family who care about you, but also knowing that you are actually utterly and completely alone? It's sort of debilitating in a way that allows you to keep moving. No matter how far I reach, there is no one within arms length."
I did not write this. It wasn't written by someone with ALS, nor even someone struggling with the kinds of physical or emotional challenges those of us cursed with some kind of illness face. No, it was written by a young person who struggles with something else entirely, that kind of aloneness we face in our modern, active world, someone who is surrounded yet alone, someone who has much in life, yet is missing that last, most important piece; a personal love relationship with that one special individual.
It's an easy feeling for many of us to understand, we singles who are seeking that other half, that person who makes us feel complete and whole. We struggle to find that right person in a world filled with "almost", or more likely "not even close." We, the single, seek to find Mr. or Mrs. Right, or even Mr. Right Now, without great success. It just seems we are surrounded by those who love us in the purest, filial sense, yet we are incapable of uncovering that person with whom we want to spend all of our time.
I see this around me a lot; I hang out with a lot of single people. Trust me, those in solid, working relationships would rather spend time with each other than hang around with singles. Those couples who enjoy the same pastimes and pursuits as I do, such as Trivia and Name That Tune, come as a pair. Even when one comes alone, you know they are there because they simply cannot be with that other special person right now; he or she is at work, or out of town, or otherwise unavailable.
It's a kind of tragedy, to be surrounded yet feel so alone; to be within a phone call or a visit from any number of people, yet to feel like your outstretched hand is untouched. It hurts to waken in the middle of the night to realize the other side of your bed is empty, to get up in the morning and make coffee for one, to sit at home in the evening getting ready for bed knowing that your last thoughts will be of loneliness, of desperate longing.
This is not a condition of illness. It is a human condition. We seek that which fulfills us. This is why I believe we were meant to be in relationships, for that unique kind of fulfillment you can only get through a truly loving relationship. We want it; we yearn for it. Yet for so many of us it remains completely, utterly, thoroughly elusive.
I did not write this. It wasn't written by someone with ALS, nor even someone struggling with the kinds of physical or emotional challenges those of us cursed with some kind of illness face. No, it was written by a young person who struggles with something else entirely, that kind of aloneness we face in our modern, active world, someone who is surrounded yet alone, someone who has much in life, yet is missing that last, most important piece; a personal love relationship with that one special individual.
It's an easy feeling for many of us to understand, we singles who are seeking that other half, that person who makes us feel complete and whole. We struggle to find that right person in a world filled with "almost", or more likely "not even close." We, the single, seek to find Mr. or Mrs. Right, or even Mr. Right Now, without great success. It just seems we are surrounded by those who love us in the purest, filial sense, yet we are incapable of uncovering that person with whom we want to spend all of our time.
I see this around me a lot; I hang out with a lot of single people. Trust me, those in solid, working relationships would rather spend time with each other than hang around with singles. Those couples who enjoy the same pastimes and pursuits as I do, such as Trivia and Name That Tune, come as a pair. Even when one comes alone, you know they are there because they simply cannot be with that other special person right now; he or she is at work, or out of town, or otherwise unavailable.
It's a kind of tragedy, to be surrounded yet feel so alone; to be within a phone call or a visit from any number of people, yet to feel like your outstretched hand is untouched. It hurts to waken in the middle of the night to realize the other side of your bed is empty, to get up in the morning and make coffee for one, to sit at home in the evening getting ready for bed knowing that your last thoughts will be of loneliness, of desperate longing.
This is not a condition of illness. It is a human condition. We seek that which fulfills us. This is why I believe we were meant to be in relationships, for that unique kind of fulfillment you can only get through a truly loving relationship. We want it; we yearn for it. Yet for so many of us it remains completely, utterly, thoroughly elusive.
Monday, 5 January 2015
It's Cold Outside
It is winter in Canada. This massive land, beset with ice and snow, is once again huddled and bundled against its only true natural enemy, the cold. This is a land where weather begins in the cold, Arctic north, over the frozen wasteland of a vast northern sea, sweeping across the massive expanse of permafrost supported tundra. The Arctic air masses that form in our great, white north move southward, most often pushed east by the high peaks of the Canadian Rockies, yet often enough even moving over their massifs, high enough to carry their cold load down to the warmths of the Pacific coast, there to bring winter even to those who rarely see snow or ice.
These winds which begin in the north easily sweep down across the Canadian prairies, then further on eastward to the Great Lakes, where they pick up more moisture, delivering their load as snow, ice pellets and freezing rain on what are inevitably the ill-prepared below. No matter how many winters we have here, we all seem surprised at the first great gush of winter precipitation. It happens year after year after year. The problem is, of course, that we know it will come; just not exactly when. It is the great Canadian guessing game. Will it snow this weekend?
That is the other great truism in this country. Bad weather almost always begins on a Friday night, working up its energy and blowing out its contents over the weekend, with the worst of it happening on Sunday night. That way the Monday morning commute couldn't possible get worse. This includes the requisite power outages from lines broken by falling trees and school bus accidents on roads which host merely a suggestion of a plowed surface.
I don't mind the cold, or the snow, or the ice... mostly. I usually hide out indoors, or take it easy and use my truck to get around. In most cases my most difficult passage is across a parking lot filled with slushy ice and snow. Sometimes I park underground, making the whole process easier. Most times I am above ground, exposed to the sub-zero freeze as I struggle my way from my truck lift system, then get my wheelchair and finally close all doors. After this fight, I can head for the doors of the place where I plan to find warmth. I get there; it's just a bit chilly at times.
My only problem today is that I am in Toronto, trapped in a hotel room while Dan is off exploring coin shops in the area. He has his hobbies; I have mine. I have no car, at least not one with hand controls. I have no specific place to go or be. Instead I plan on watching the Junior Hockey Championships today, enjoying a cold beer, perched up on my bed here in my hotel room. My plans for travel today involve going absolutely nowhere. After all, oh baby, it's cold outside.
These winds which begin in the north easily sweep down across the Canadian prairies, then further on eastward to the Great Lakes, where they pick up more moisture, delivering their load as snow, ice pellets and freezing rain on what are inevitably the ill-prepared below. No matter how many winters we have here, we all seem surprised at the first great gush of winter precipitation. It happens year after year after year. The problem is, of course, that we know it will come; just not exactly when. It is the great Canadian guessing game. Will it snow this weekend?
That is the other great truism in this country. Bad weather almost always begins on a Friday night, working up its energy and blowing out its contents over the weekend, with the worst of it happening on Sunday night. That way the Monday morning commute couldn't possible get worse. This includes the requisite power outages from lines broken by falling trees and school bus accidents on roads which host merely a suggestion of a plowed surface.
I don't mind the cold, or the snow, or the ice... mostly. I usually hide out indoors, or take it easy and use my truck to get around. In most cases my most difficult passage is across a parking lot filled with slushy ice and snow. Sometimes I park underground, making the whole process easier. Most times I am above ground, exposed to the sub-zero freeze as I struggle my way from my truck lift system, then get my wheelchair and finally close all doors. After this fight, I can head for the doors of the place where I plan to find warmth. I get there; it's just a bit chilly at times.
My only problem today is that I am in Toronto, trapped in a hotel room while Dan is off exploring coin shops in the area. He has his hobbies; I have mine. I have no car, at least not one with hand controls. I have no specific place to go or be. Instead I plan on watching the Junior Hockey Championships today, enjoying a cold beer, perched up on my bed here in my hotel room. My plans for travel today involve going absolutely nowhere. After all, oh baby, it's cold outside.
Sunday, 4 January 2015
Morning Sickness
I think I might be pregnant. I know there are obvious reasons why this diagnosis might not be true. I am male. I am nearly 60, clearly within andropausal and menopausal range. I haven't had sex in well over a year, which, in a coincidence which hasn't escaped me, is about how long I have been feeling this way. Certainly all of these things would mean I mustn't be pregnant.
Yet consider the symptoms. This morning I woke up slowly, with difficulty, and the mere thought of food nauseates me. Right now, as I sit here typing, I am looking for a nearby bucket just in case. Brushing my teeth makes me feel like I want to vomit. My belly is swollen and I feel bloated. Plus there must be something going on with my hormones because I feel like crying so often and I get upset so easily.
Those who know me well enough might try to suggest that this has something to do with over-consumption of wine. Alas, yesterday I didn't drink a drop; I was tired and didn't feel like it. Also, the whole food thing is annoying in that in my mind I am hungry but in my stomach I am not. On top of that, I ate yesterday, although lightly, plus had the requisite amount of water and even some orange juice.
Usually on mornings when I feel this way I simply go back to bed for another hour or two. The extra rest seems to give hunger sufficient time to overtake nausea. Plus it is not every morning I feel this way, just most of them. I think I am reaching the stage where eating is more of a chore than the joy I get from food. I love to eat; this is such a sad stage for me.
My real hope lies in the day. As the hours pass I will become hungrier and more willing to tolerate the discomfort of eating. As the hours pass I will become more alert, more awake, more willing to take risks. As the hours pass, I surely will smell the smell of food from somewhere, triggering the craving within me. At least I hope so. This morning sickness sucks.
Yet consider the symptoms. This morning I woke up slowly, with difficulty, and the mere thought of food nauseates me. Right now, as I sit here typing, I am looking for a nearby bucket just in case. Brushing my teeth makes me feel like I want to vomit. My belly is swollen and I feel bloated. Plus there must be something going on with my hormones because I feel like crying so often and I get upset so easily.
Those who know me well enough might try to suggest that this has something to do with over-consumption of wine. Alas, yesterday I didn't drink a drop; I was tired and didn't feel like it. Also, the whole food thing is annoying in that in my mind I am hungry but in my stomach I am not. On top of that, I ate yesterday, although lightly, plus had the requisite amount of water and even some orange juice.
Usually on mornings when I feel this way I simply go back to bed for another hour or two. The extra rest seems to give hunger sufficient time to overtake nausea. Plus it is not every morning I feel this way, just most of them. I think I am reaching the stage where eating is more of a chore than the joy I get from food. I love to eat; this is such a sad stage for me.
My real hope lies in the day. As the hours pass I will become hungrier and more willing to tolerate the discomfort of eating. As the hours pass I will become more alert, more awake, more willing to take risks. As the hours pass, I surely will smell the smell of food from somewhere, triggering the craving within me. At least I hope so. This morning sickness sucks.
Saturday, 3 January 2015
Not Ready For Action
I am beat, absolutely bushed. IT's already 4:30 PM here in Waterloo, Ontario. My day started at 9:00 AM although I did manage to beg for another half our of sleep from Dan. We were expected at the church by 11:00 AM. Dan wanted to have breakfast and he wanted to be sure I was up and about. I understand his concern; I had been up until about 3:30 AM the night before and there was certainly no guarantee that I would get going all on my own.
If you do the math on sleep and wake-up, you will find that I got about 6 1/2 hours of sleep last night, about half of my daily average. All day today I have been sluggish, slow to go and quick to stop. Even my typing right now is slower than normal. As a healthier man, or perhaps just a younger man, I could easily handle a busy day after a short night. No more. Now I need that 12 hours or so of rest each night if I plan on functioning effectively the next day.
The day itself was busy enough that a nap was a near impossibility. I did manage to sneak away from the luncheon; fortunately it was being hosted at the hotel where we are staying right now. I headed up to my room to use the washroom and thought to myself "Sure, just climb into bed and have a nap." Unfortunately the lack of sleep has affected my strength and when the time came, my arms were too weak to lift me up to the high mattress, the pillow top kind that is high enough where I can only get in if I work hard at it. I am too tired to work hard, so I just went back to the reception.
Now that it is over, Dan is here in the room too. He will help me get into bed, something others have had to help me with when traveling. It's part of the deal these days; I simply cannot do everything for myself any longer. There are a few things like that when I travel, like wanting a push rather than pushing myself, or asking others to carry my luggage. I am getting weaker; it is becoming more obvious and is impacting me more significantly.
Fortunately through all of this I have my friends, those who stand beside me, walk beside me, push me in front of them, as I make my way through this journey. I just can't do some of this stuff alone anymore. I'll go to bed early tonight. I suspect I will sleep about 16 hours or so. Then tomorrow will come and I will be ready for action once again.
Friday, 2 January 2015
Travel Limitations
I've been traveling a lot over the last couple of years, since I was diagnosed. Travel, whether by road or air or boat, is something I have always loved to do. Given that I have been given a rough bill of goods to handle lately, I've been doing what I love most, travel. I like to see new places, to revisit old places, to experience life differently. It also allows me to run away from home for a bit, to pretend that ALS really doesn't matter to me all that much.
This trip is different. I am here in Waterloo, Ontario for a purpose, for the funeral of a friend, Marianne, mother to Anisa, one of the close friends in my inner circle. As such, certain parts of this trip are proscribed and other are prescribed. Today I am to attend at the funeral home for the "visitation". Tomorrow will be the funeral mass at a local Catholic church. After these required events, Dan, the fellow I am traveling with, and I have an open schedule until Wednesday evening, the nearest time we could get a flight back to Calgary.
Dan will want to spend as much time as possible with Anisa; they are a couple. That leaves me with a lot of free time here in Waterloo, or possibly up in Mississauga. Once the funeral is over, there is really no need for me to stay here; I can get a hotel closer to Toronto, perhaps even in Toronto. One the other hand, if Dan and Anisa have time and want to explore the local area, I am all for that too. It's one of the great things about free time, be it traveling or at home; I can do something unexpected.
There is one small fly in this ointment. Transportation. Dan and I have rented a car, one with standard controls. We tried to rent one with hand controls but there was nothing available on short notice, that short notice being demanded by the timing of Marianne's funeral. While I am certain I can depend on Dan to be good and polite about driving me from place to place, he is here for Anisa, not for me. There will almost certainly be moments of compromise and crossed purposes.
This morning was a great example. He was up and ready to go while I had not yet written or had a cup of coffee. I need both of these things to start my day properly. It's more want than need, more habit than necessity, yet they are important to me. By way of compromise, he went on ahead to the funeral home and will come get me afterwards. I am sure there will be other things.
I hate to be a nuisance like this, especially at a time like this. Those who travel with me understand, and get to see, the challenges for me these days. I try not to let them get in the way. I am going to try harder over the next few days. It will still be a good trip, if started for a sad reason.
This trip is different. I am here in Waterloo, Ontario for a purpose, for the funeral of a friend, Marianne, mother to Anisa, one of the close friends in my inner circle. As such, certain parts of this trip are proscribed and other are prescribed. Today I am to attend at the funeral home for the "visitation". Tomorrow will be the funeral mass at a local Catholic church. After these required events, Dan, the fellow I am traveling with, and I have an open schedule until Wednesday evening, the nearest time we could get a flight back to Calgary.
Dan will want to spend as much time as possible with Anisa; they are a couple. That leaves me with a lot of free time here in Waterloo, or possibly up in Mississauga. Once the funeral is over, there is really no need for me to stay here; I can get a hotel closer to Toronto, perhaps even in Toronto. One the other hand, if Dan and Anisa have time and want to explore the local area, I am all for that too. It's one of the great things about free time, be it traveling or at home; I can do something unexpected.
There is one small fly in this ointment. Transportation. Dan and I have rented a car, one with standard controls. We tried to rent one with hand controls but there was nothing available on short notice, that short notice being demanded by the timing of Marianne's funeral. While I am certain I can depend on Dan to be good and polite about driving me from place to place, he is here for Anisa, not for me. There will almost certainly be moments of compromise and crossed purposes.
This morning was a great example. He was up and ready to go while I had not yet written or had a cup of coffee. I need both of these things to start my day properly. It's more want than need, more habit than necessity, yet they are important to me. By way of compromise, he went on ahead to the funeral home and will come get me afterwards. I am sure there will be other things.
I hate to be a nuisance like this, especially at a time like this. Those who travel with me understand, and get to see, the challenges for me these days. I try not to let them get in the way. I am going to try harder over the next few days. It will still be a good trip, if started for a sad reason.
Thursday, 1 January 2015
Another New Year
It is the first day of a new year, or at least according to our Julian calendar. In my mind, this is just another one of those artificial marker posts we, as human beings, seem to need in our life. Watching the calendar, especially in an agrarian society, is a significant and important task. This date, January 1st, while long being celebrated as the start of a new year in western culture, is as artificial as any other year. The closest thing we can attach it to is the winter solstice, a day when days start getting longer; only that happened almost two weeks ago.
Perhaps the most significant thing about today for me is that it marks the fifth calendar year in which I am living with ALS. My symptoms, subtle as they were, first started to appear in early 2011. I was diagnosed in late 2012. Then came 2013, followed by 2014 and now on to 2015. In each of these years I have seen marked change in my physical strength and abilities. I don't doubt that this year will be the same.
There are already two frightening elements I am having to contend with in this calendar year. First, and most significantly, this is what I call my 80% time. The end of this year marks the year in which, with ALS, roughly 80% of PALS would be dead. It's kind of a count down year. I might make it longer, in fact I hope to make it a lot longer. The reality, of course, is unknown; I am just going to have to see what happens.
The next worrisome element, the more practical element, is money. In a few months my RRSP will run out. It was kind of the plan that it would last about 3 or 4 months shorter than my projected life expectancy. To be honest, by this time I was expecting to be in far worse shape than I am. I should be glad that things are moving along slowly, although they are most certainly moving along. It's the vagaries of life that would have me get this one wrong.
I don't think I would change that plan all that much. I have lived a terrific couple of years. I hope to live another interesting year. I know the challenges, or at least some of the challenges, it will put before me. I may have to sell my home. I will almost certainly lose my truck. I will be compelled to reduce my lifestyle. My quality of life will continue to decline.
Even with these challenges, I still plan on living as much of life as I can. After all, the other choice is not all that appealing yet.
Perhaps the most significant thing about today for me is that it marks the fifth calendar year in which I am living with ALS. My symptoms, subtle as they were, first started to appear in early 2011. I was diagnosed in late 2012. Then came 2013, followed by 2014 and now on to 2015. In each of these years I have seen marked change in my physical strength and abilities. I don't doubt that this year will be the same.
There are already two frightening elements I am having to contend with in this calendar year. First, and most significantly, this is what I call my 80% time. The end of this year marks the year in which, with ALS, roughly 80% of PALS would be dead. It's kind of a count down year. I might make it longer, in fact I hope to make it a lot longer. The reality, of course, is unknown; I am just going to have to see what happens.
The next worrisome element, the more practical element, is money. In a few months my RRSP will run out. It was kind of the plan that it would last about 3 or 4 months shorter than my projected life expectancy. To be honest, by this time I was expecting to be in far worse shape than I am. I should be glad that things are moving along slowly, although they are most certainly moving along. It's the vagaries of life that would have me get this one wrong.
I don't think I would change that plan all that much. I have lived a terrific couple of years. I hope to live another interesting year. I know the challenges, or at least some of the challenges, it will put before me. I may have to sell my home. I will almost certainly lose my truck. I will be compelled to reduce my lifestyle. My quality of life will continue to decline.
Even with these challenges, I still plan on living as much of life as I can. After all, the other choice is not all that appealing yet.
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