I'm feeling really down today. It's interesting that I can feel this way and not contemplate suicide. That's the medications working. I am allowed to be sad, to have a down day, without it turning into a drama filled, internal battle over whether or not life is worth living. I don't want to die, I just feel sad today.
It's that kind of day where I ask myself, "How the hell did I end up here?" How did I end up living on Disability and AISH when just a short few years ago I was doing well in a high paying career? How the hell did I end up with an illness nicknamed "the bankruptcy disease"? How the hell did I end up with Home Care Aides, nurses, doctors, therapists and all kinds of others looking after, and looking into, my life?
I'm getting weaker every day, and it really sucks. I exhaust faster and with much less effort than ever before, and it really sucks. I'm tired all the time, and it really sucks. I know there are good things in my life, and I work really hard to focus on them, to enjoy them. It is in my nature to find solutions, to make things work, notwithstanding what is happening to me every day.
Then, some mornings, some days, I wake up and the whole impact of ALS really slams into me. It's not the normal "ah shit" that I say every morning when I wake up; it's more. I wake up with a full, internal, gut wrenching sense of what I am truly living with, what I am truly going through.
It's not about "why me". Nor is it about "poor me". There is no reason why my life has turned out this way, nor is there anything I could have done to stop it, to prevent myself from getting ALS. As to "poor me", it's true that I engage in moments of self-pity; I have that right. What I don't do is live there. I just get up and keep going.
This morning is not a wonder about what I did to get here. This morning is not a self-pity party. It's just me wondering, thinking about how my life has turned out so much differently than I expected. I followed the rules, worked hard, paid my taxes, raised my children, gave to charity, was generous to all those around me. Yet here I am, dying slowly, this disease destroying my body, my life.
How the hell did I get here?
Monday, 29 February 2016
Sunday, 28 February 2016
Three Years In A Wheelchair
It's been more than three years since the last time I walked. Three long years; years where my mobility has been framed by wheelchair access, years where stairs have been beyond me, years where curbs on streets, sills on doorways, slopes in parking lots and so much more have conspired to wear me asunder. Three years have I been handicapped thus.
Over those three years my legs have died completely, or at least almost completely. It is the oddity of ALS that one muscle in my feet still works, the muscle that allows me to move my toes ever so slightly. Even that muscle, however, weakening. My legs have lost so much in other ways, even the ability to move blood up and down from my feet.
Yet all the while, even as my body has been slowly creeping towards complete inability, I have worked hard to maintain an active lifestyle, a life worth living. Losing the ability to walk, to stand, is not losing the ability to live. Losing the ability to jump, run, climb, and even make love, is not losing the ability to live. It's simply a thing in my life which forces me to live differently.
I think life is all the sweeter for losing it. I treasure so much of what I can do these days, look forward with excitement to those things which bring me pleasure. The loss of that which I could do pales in comparison with those things remaining. I can still laugh, talk, smile, eat a good meal, enjoy a good movie, I can still, amazingly enough, drive my truck, go shopping, explore the world around me. I can still travel, assuming I can afford it.
In fact the biggest thing I have lost in those last three years is my ability to afford things. Shortly after losing my ability to walk, I left my work life behind, and the income from that work life. For a while I had my savings, then my RRSP. Now I have nothing, except for a lot of debt. I would love to walk again. I would not sell my soul, but I would pay almost any price, incur any debt.
I've done the best I can in a difficult situation, a situation which would have caused a great many people to give up. I'm not a poster child for fiscal responsibility for sure, but I am fairly certain I am a decent role model for how to live with a brutal, debilitating, terminal illness. I can't walk, but I am still alive and kicking. That's what counts.
Over those three years my legs have died completely, or at least almost completely. It is the oddity of ALS that one muscle in my feet still works, the muscle that allows me to move my toes ever so slightly. Even that muscle, however, weakening. My legs have lost so much in other ways, even the ability to move blood up and down from my feet.
Yet all the while, even as my body has been slowly creeping towards complete inability, I have worked hard to maintain an active lifestyle, a life worth living. Losing the ability to walk, to stand, is not losing the ability to live. Losing the ability to jump, run, climb, and even make love, is not losing the ability to live. It's simply a thing in my life which forces me to live differently.
I think life is all the sweeter for losing it. I treasure so much of what I can do these days, look forward with excitement to those things which bring me pleasure. The loss of that which I could do pales in comparison with those things remaining. I can still laugh, talk, smile, eat a good meal, enjoy a good movie, I can still, amazingly enough, drive my truck, go shopping, explore the world around me. I can still travel, assuming I can afford it.
In fact the biggest thing I have lost in those last three years is my ability to afford things. Shortly after losing my ability to walk, I left my work life behind, and the income from that work life. For a while I had my savings, then my RRSP. Now I have nothing, except for a lot of debt. I would love to walk again. I would not sell my soul, but I would pay almost any price, incur any debt.
I've done the best I can in a difficult situation, a situation which would have caused a great many people to give up. I'm not a poster child for fiscal responsibility for sure, but I am fairly certain I am a decent role model for how to live with a brutal, debilitating, terminal illness. I can't walk, but I am still alive and kicking. That's what counts.
Saturday, 27 February 2016
Warmth
The sky is dull and grey today, overcast, a blanket of low cloud from horizon to horizon. Looking out my window, my world seems close and tight, claustrophobic. The air is still, the somber skies keeping sound in, amplifying the traffic noise from the street below. The air is cooler, the Chinook arch which has been giving us double digit temperatures lately has receded, northern air coming in to take its place, bringing this gloomy weather, the rain soon to fall.
Even though the air outside is cool, it's warm inside my apartment. My home is always warm, even hot sometimes, despite the season. In summer it becomes stultifying; in winter it's just mildly sweating. This excess of warmth inside my walls is thanks to my positioning in the building. There are heated spaces on five of the six sides of this constructed box in which I live. On the top, bottom, and both sides, there are other apartments. On the inner wall, there is a heated hallway. On my outer exposure, facing east, the sun beats warm against the windows, heating up the inside of my home no matter what the temperature outside.
To combat this incessant warming, I have completely turned off the heat in my apartment. It's a kind of a shame, because heating is included in my condominium fees, and I don't ever use it. In fact I use my portable air conditioner on more days, many more days, than I would ever consider turning on the heat. There are not more than a few days a year when I might refer to my place as being even close to chilly.
I don't mind being warm. It can be uncomfortable when we have a group here, especially more than three or four people. Many days it's warm enough that, even in the midst of winter, we need to open the sliding doors to my balcony to let in cooler air. Today, when the temperature is 7C outside, the window is open wide. Yet still I am warm, almost too warm, sitting here in my shorts and shirt.
The only time it can really cool down in here is at night, although often that refreshing chill does not arrive until the middle of the night, when my neighbours have turned down their heat and when the sun is long gone, when temperatures return to near freezing outside. By then I am curled up under my blanket, warm, waiting for the morning sun to start heating me up all over again.
Even though the air outside is cool, it's warm inside my apartment. My home is always warm, even hot sometimes, despite the season. In summer it becomes stultifying; in winter it's just mildly sweating. This excess of warmth inside my walls is thanks to my positioning in the building. There are heated spaces on five of the six sides of this constructed box in which I live. On the top, bottom, and both sides, there are other apartments. On the inner wall, there is a heated hallway. On my outer exposure, facing east, the sun beats warm against the windows, heating up the inside of my home no matter what the temperature outside.
To combat this incessant warming, I have completely turned off the heat in my apartment. It's a kind of a shame, because heating is included in my condominium fees, and I don't ever use it. In fact I use my portable air conditioner on more days, many more days, than I would ever consider turning on the heat. There are not more than a few days a year when I might refer to my place as being even close to chilly.
I don't mind being warm. It can be uncomfortable when we have a group here, especially more than three or four people. Many days it's warm enough that, even in the midst of winter, we need to open the sliding doors to my balcony to let in cooler air. Today, when the temperature is 7C outside, the window is open wide. Yet still I am warm, almost too warm, sitting here in my shorts and shirt.
The only time it can really cool down in here is at night, although often that refreshing chill does not arrive until the middle of the night, when my neighbours have turned down their heat and when the sun is long gone, when temperatures return to near freezing outside. By then I am curled up under my blanket, warm, waiting for the morning sun to start heating me up all over again.
Friday, 26 February 2016
There Is Nothing Anyone Can Do
I just poured a bowl of Alpha-bits for my breakfast. I went to put my spoon in the bowl and my hand shook sufficiently that I spilled half the bowl out while putting the spoon in. I've picked up the Alpha-bits. This kind of spillage is now a common occurrence in my life. Whether it's eating with a spoon, fork or even with chopsticks, dropping food as I eat it, thanks to shaking hands, is normal.
ALS is a tough disease. Even the anti-depressants can't take away that sad reality. It's hard to deal with the ever increasing weakness, the shaking, the exhaustion. It's a sad thing when the quality of my morning is measured on the quality and success of a bowel movement. It's distressing knowing that I will pee on myself at least once today for certain, and at some point will have wet underwear no matter what I do. They won't be really wet, just a drop or two. Just enough to remind me that I can't go pee the way I used to.
I have trouble chopping vegetables these days. Onions, peppers, garlic, carrots, potatoes; all of them present a challenge to me, not because I cannot cut through them, but because the repetitive action of cutting several of them tires me out. Mashing avocados for guacamole, mashing potatoes for dinner, kneading dough for baking; these things all force me to stop and take a break in the middle of the process. Katherine usually finishes them up for me.
These days even wheeling my wheelchair any great distance is difficult. Yesterday Katherine and I went shopping at the local Co-op. I wanted supplies for making lasagna this Sunday. I wheeled myself around the store while Katherine managed the shopping cart. By the time I got home, my body was so beat that I transferred to the couch and didn't move until bedtime. Katherine ate at the table while I ate dinner on the couch.
Like I said, ALS is a tough disease. It gets you a bit at a time, until one day you realize it has you completely. And there is nothing anyone can do about it.
ALS is a tough disease. Even the anti-depressants can't take away that sad reality. It's hard to deal with the ever increasing weakness, the shaking, the exhaustion. It's a sad thing when the quality of my morning is measured on the quality and success of a bowel movement. It's distressing knowing that I will pee on myself at least once today for certain, and at some point will have wet underwear no matter what I do. They won't be really wet, just a drop or two. Just enough to remind me that I can't go pee the way I used to.
I have trouble chopping vegetables these days. Onions, peppers, garlic, carrots, potatoes; all of them present a challenge to me, not because I cannot cut through them, but because the repetitive action of cutting several of them tires me out. Mashing avocados for guacamole, mashing potatoes for dinner, kneading dough for baking; these things all force me to stop and take a break in the middle of the process. Katherine usually finishes them up for me.
These days even wheeling my wheelchair any great distance is difficult. Yesterday Katherine and I went shopping at the local Co-op. I wanted supplies for making lasagna this Sunday. I wheeled myself around the store while Katherine managed the shopping cart. By the time I got home, my body was so beat that I transferred to the couch and didn't move until bedtime. Katherine ate at the table while I ate dinner on the couch.
Like I said, ALS is a tough disease. It gets you a bit at a time, until one day you realize it has you completely. And there is nothing anyone can do about it.
Thursday, 25 February 2016
Physician Assisted Dying
Physician assisted dying is all over the headlines here in Canada these days. It's a debate which has been going on for years; I remember it from news stories when I was much younger, before ALS had even entered my consciousness. In fact it was this very debate which brought me to awareness of ALS; the person challenging the law at that time had ALS.
It's an interesting thing, that this whole physician assisted dying issue has been driven in many cases by PALS. There are others with terminal, incurable illnesses. These others are certainly on the forefront of this debate. Yet I see an over-representation of PALS in these court cases, taking cases to the Supreme Court, bringing the challenge of their disease to the headlines.
I'm not sure if this over-representation is real, or if it is simply because I am personally more aware of ALS these days. What I do know, for sure, is that PALS are in perhaps the best position of all to understand why someone might legitimately seek to end their life with the help of a doctor. There is no other outcome for us other than a debilitating death. The process through which we go is humiliating, painful, disabling, and terminal. Quality of life diminishes as time goes on, until there is almost no quality to life at all.
Yet even with this, I see many PALS well into complete paralysis living interesting, fulfilled lives. They are out there, using the breathing machines and the feeding tubes, rolling around in their power wheelchairs assisted by care givers, communicating through speech synthesis, staying alive and living as best they can. Look at Stephen Hawking; he makes a tremendous difference with his life, even while fully frozen physically.
I suppose it all comes down to this. Some of us PALS want to stay as long as possible, others want to leave when it suits them. Who are we to judge which is better? Ultimately death comes to all of us. All I want, all any of us want, is a chance to lead a life with some dignity, and to have the same in death. Is that too much to ask?
It's an interesting thing, that this whole physician assisted dying issue has been driven in many cases by PALS. There are others with terminal, incurable illnesses. These others are certainly on the forefront of this debate. Yet I see an over-representation of PALS in these court cases, taking cases to the Supreme Court, bringing the challenge of their disease to the headlines.
I'm not sure if this over-representation is real, or if it is simply because I am personally more aware of ALS these days. What I do know, for sure, is that PALS are in perhaps the best position of all to understand why someone might legitimately seek to end their life with the help of a doctor. There is no other outcome for us other than a debilitating death. The process through which we go is humiliating, painful, disabling, and terminal. Quality of life diminishes as time goes on, until there is almost no quality to life at all.
Yet even with this, I see many PALS well into complete paralysis living interesting, fulfilled lives. They are out there, using the breathing machines and the feeding tubes, rolling around in their power wheelchairs assisted by care givers, communicating through speech synthesis, staying alive and living as best they can. Look at Stephen Hawking; he makes a tremendous difference with his life, even while fully frozen physically.
I suppose it all comes down to this. Some of us PALS want to stay as long as possible, others want to leave when it suits them. Who are we to judge which is better? Ultimately death comes to all of us. All I want, all any of us want, is a chance to lead a life with some dignity, and to have the same in death. Is that too much to ask?
Wednesday, 24 February 2016
No Free Passes
ALS attacks all kinds of people; every age group, every socioeconomic class, every political type, every race, colour and creed. It is an indiscriminate killer; a random, non-selective, capricious disease with no apparent reason behind it's choice of target. The means that people who get this illness can come from the best situations in life, to the worst situations in life.
Some time ago I heard from a woman about 10 years younger than me living in a clearly tragic situation. She has ALS; it is breaking her body and destroying her life. To make matters worse, her husband has a drinking problem. He had stopped for some time, but when she was diagnosed he started again. It had reached the point, when last I heard from her, that he was coming home every night drunk, and angry.
Alcohol and anger make for bad bedfellows, especially when a strong man confronts a failing woman in a wheelchair. She never mentioned physical violence, but there was certainly emotional distress. He blamed her for his life, for the fact that he was compelled to care for her, or, according to her, as he said it, "wait on her hand and foot." He was angry that her illness ruined his life, ruined their marriage, at least the way he saw it. He was completely unable to deal with her illness, and hated what she had become.
When I last heard from her, she also said that he had arranged to have her put in a care home. This was not hospice so much as one of those care facilities where we park failing seniors and people with Alzheimer's. I suggested to her that this might not be a bad thing, given her situation at home. As she rightly pointed out, she was about to lose her home, family, surroundings, and her life. It was all so terribly wrong.
She died yesterday. Another PALS let me know, sent me a note. She died in hospice, away from her home, in unfamiliar surroundings. She died. As to whether or not she was alone, I know not. As to whether or not her husband stopped drinking once she was out of his sight, I know not. I know one thing for sure. Her death will not ease his pain, just as the alcohol did not ease his pain. Nor will it remove his anger, just as the alcohol did not remove his anger. He's going to carry that weight for a long time.
ALS is a terrible disease. Not only does it steal your life, you don't get a free pass on all the other things which happen along the way. Shitty life situations remain shitty, perhaps getting worse. Financial worries still worry you, certainly getting worse. Drunks remain drunks. Abusers remain abusers.
Whenever I think about how bad my situation is, it bears remembering. I am in my own home. I have a woman who loves me beyond measure. I have an incredible support system, family and children who love and care for me, friends around me who want my life to be as good as it can be for as long as possible. I may have a terrible disease, but I have a good life.
Some time ago I heard from a woman about 10 years younger than me living in a clearly tragic situation. She has ALS; it is breaking her body and destroying her life. To make matters worse, her husband has a drinking problem. He had stopped for some time, but when she was diagnosed he started again. It had reached the point, when last I heard from her, that he was coming home every night drunk, and angry.
Alcohol and anger make for bad bedfellows, especially when a strong man confronts a failing woman in a wheelchair. She never mentioned physical violence, but there was certainly emotional distress. He blamed her for his life, for the fact that he was compelled to care for her, or, according to her, as he said it, "wait on her hand and foot." He was angry that her illness ruined his life, ruined their marriage, at least the way he saw it. He was completely unable to deal with her illness, and hated what she had become.
When I last heard from her, she also said that he had arranged to have her put in a care home. This was not hospice so much as one of those care facilities where we park failing seniors and people with Alzheimer's. I suggested to her that this might not be a bad thing, given her situation at home. As she rightly pointed out, she was about to lose her home, family, surroundings, and her life. It was all so terribly wrong.
She died yesterday. Another PALS let me know, sent me a note. She died in hospice, away from her home, in unfamiliar surroundings. She died. As to whether or not she was alone, I know not. As to whether or not her husband stopped drinking once she was out of his sight, I know not. I know one thing for sure. Her death will not ease his pain, just as the alcohol did not ease his pain. Nor will it remove his anger, just as the alcohol did not remove his anger. He's going to carry that weight for a long time.
ALS is a terrible disease. Not only does it steal your life, you don't get a free pass on all the other things which happen along the way. Shitty life situations remain shitty, perhaps getting worse. Financial worries still worry you, certainly getting worse. Drunks remain drunks. Abusers remain abusers.
Whenever I think about how bad my situation is, it bears remembering. I am in my own home. I have a woman who loves me beyond measure. I have an incredible support system, family and children who love and care for me, friends around me who want my life to be as good as it can be for as long as possible. I may have a terrible disease, but I have a good life.
Tuesday, 23 February 2016
I Can Be Me
It's funny how you realize some of the things which make a relationship work, or fail, only long after the moment has passed. It's interesting how the very behaviours that drove you crazy in one relationship seem perfectly acceptable in another, how the response to a situation and how it affects you can be so different in circumstances which are so similar.
Of course I am, in this moment, looking at how my first marriage worked, and how my relationship with Katherine works. It's fascinating to self-observe, to look at how I am different, and how Katherine responds to who I am. This is not comparison of one versus the other, it is an examination of how one relationship can fail while another can work, even with so much in common.
In my marriage, right from the beginning, I was so desperate for my ex-wife's love and approval that I would contort my thought and actions into a pretzel in order to be onside with her, that I would say or do all kinds of things diametrically opposed to my own personality in order to gain her love. This lack of truth to self inevitably comes to an end; after about 10 years of this I simply could not do it any more. But by that time, the damage was done.
With Katherine, I still want her love and approval. But this time it's different. Right from the get go, Katherine has decided she will love me for who and what I am, not for who and what she would like me to be. I don't have to lie about who I really am; either she loves me the way I am, or not. I would be unhappy if she did not, but the damage of truth is far better than living a lie.
In an odd way, one of the best things Katherine does to support our relationship is in the way she expresses her anger. She gets mad at me sometimes; I admit it, I can drive almost anyone crazy some days, even a saint. But when she gets angry, there is no hint of judgement in it. She gets angry with things I do, not with who I am. And she doesn't hold a grudge. Once the moment is gone, there are no lingering hatreds, no hidden agendas.
With Katherine, I can be who I am. This on it's own makes me a better person. I am supported in being who I am, except when my behaviour makes life difficult. Even then, disapproval is not about me, it is about the thing I did. It is such a wonderful thing to be loved, and not to be judged; to be accepted for who and what I am, and not to be found wanting.
That's the real difference in my relationship with Katherine versus my marriage. With Katherine, I can be me.
Of course I am, in this moment, looking at how my first marriage worked, and how my relationship with Katherine works. It's fascinating to self-observe, to look at how I am different, and how Katherine responds to who I am. This is not comparison of one versus the other, it is an examination of how one relationship can fail while another can work, even with so much in common.
In my marriage, right from the beginning, I was so desperate for my ex-wife's love and approval that I would contort my thought and actions into a pretzel in order to be onside with her, that I would say or do all kinds of things diametrically opposed to my own personality in order to gain her love. This lack of truth to self inevitably comes to an end; after about 10 years of this I simply could not do it any more. But by that time, the damage was done.
With Katherine, I still want her love and approval. But this time it's different. Right from the get go, Katherine has decided she will love me for who and what I am, not for who and what she would like me to be. I don't have to lie about who I really am; either she loves me the way I am, or not. I would be unhappy if she did not, but the damage of truth is far better than living a lie.
In an odd way, one of the best things Katherine does to support our relationship is in the way she expresses her anger. She gets mad at me sometimes; I admit it, I can drive almost anyone crazy some days, even a saint. But when she gets angry, there is no hint of judgement in it. She gets angry with things I do, not with who I am. And she doesn't hold a grudge. Once the moment is gone, there are no lingering hatreds, no hidden agendas.
With Katherine, I can be who I am. This on it's own makes me a better person. I am supported in being who I am, except when my behaviour makes life difficult. Even then, disapproval is not about me, it is about the thing I did. It is such a wonderful thing to be loved, and not to be judged; to be accepted for who and what I am, and not to be found wanting.
That's the real difference in my relationship with Katherine versus my marriage. With Katherine, I can be me.
Monday, 22 February 2016
Powerlessness
I am powerless. At least, I was supposed to be powerless, for the whole day. Enmax, the electrical supplier here in Calgary, had given us a notice that they would be cutting off the electricity to our block of buildings from 9:00 AM to 5:00 PM today. There are apparently upgrades or repairs needed for our neighbourhood.
As it turned out, the power went out at 10:15 AM and was back on by 11:00 AM, just enough time for me to use the bathroom and shower in the dark. By the time I no longer needed the lights, they were up and on. That's the way things happen in life. When you need something, it's usually not there. When you don't need something, there's plenty around you.
I actually had a plan for my whole day today. I was going to shower in the dark, as happened. I was going to have my exercises, as happened. I was going to write in my blog, thanks to battery power on my laptop and the Internet connection via my cell phone. I'm certainly writing, but there is no need for my phone. With the power back on, my home Internet is working just fine.
There are lights; it's no longer pitch dark in the bathroom once I close the door. My clock beside my bed dutifully reset it's time, slow by the four minutes it has ever been. The fan is once again blowing cool air across my unseasonably warm apartment. The fridge and freezer are whirring away. Katherine is using the stove to make a hot lunch.
Breakfast was to have been cereal and milk. The plan for the rest of my day was to spend my afternoon reading and napping. Even with the electricity back on, I can still have my cereal and read my book. It just doesn't seem like as much fun; it's not so much like camping anymore.
As it turned out, the power went out at 10:15 AM and was back on by 11:00 AM, just enough time for me to use the bathroom and shower in the dark. By the time I no longer needed the lights, they were up and on. That's the way things happen in life. When you need something, it's usually not there. When you don't need something, there's plenty around you.
I actually had a plan for my whole day today. I was going to shower in the dark, as happened. I was going to have my exercises, as happened. I was going to write in my blog, thanks to battery power on my laptop and the Internet connection via my cell phone. I'm certainly writing, but there is no need for my phone. With the power back on, my home Internet is working just fine.
There are lights; it's no longer pitch dark in the bathroom once I close the door. My clock beside my bed dutifully reset it's time, slow by the four minutes it has ever been. The fan is once again blowing cool air across my unseasonably warm apartment. The fridge and freezer are whirring away. Katherine is using the stove to make a hot lunch.
Breakfast was to have been cereal and milk. The plan for the rest of my day was to spend my afternoon reading and napping. Even with the electricity back on, I can still have my cereal and read my book. It just doesn't seem like as much fun; it's not so much like camping anymore.
Sunday, 21 February 2016
Bye, Bye, Biceps
Well, it's happened. For some time now I have been noticing the decrease in strength in my arms, my left arm in particular. Now, it's official. I can no longer flex the bicep in my left arm. I can try. Other muscles move in my upper left arm. But my bicep refuses to twitch, move, shake, shimmy, wiggle, whatever. It don't work no more.
I noticed it this morning while I was sitting in my wheelchair enjoying a coffee while not wearing a shirt. It's not the way I spent most mornings, so this final resting place of my left bicep may have happened a while ago without my noticing. I happened to pick up my cup, and as I did so, my left arm, the one doing the picking up in this case, moved funny, flexed oddly. Instead of my bicep moving up and down, it sort of rotated, making a dimple in the crook of my elbow. Upon further testing, instead of a bulge, it just sat there, flabby and unmoving.
The other muscles in my arms are taking up the slack. My right bicep seems to maintain some semblance of working order. My latissimus dorsi flexes a bit still, as one might expect. My deltoids are somewhat active, although nowhere near what they used to be. My triceps still seem fairly good, if not strong at least responding to an intentional signal to move.
This, of course, is a signal of what is to come. In a few months the other muscles in my arms will start to fail me. They will continue on their weakening path until, like my biceps, they fail to move much at all. My flexors and abductors in my lower arm will work for a while yet, then, ultimately they will go the path of my upper arms.
I'm still reasonably capable, still able to lift, pull, push and carry to some degree. I can still wheel myself to some degree, still make a transfer although not well, still drive my truck. This is a slow moving process, so slow that I don't notice it some times, like my left bicep. I hadn't noticed it failing to flex until this morning, although it has been failing for some time. That's the way ALS works.
I noticed it this morning while I was sitting in my wheelchair enjoying a coffee while not wearing a shirt. It's not the way I spent most mornings, so this final resting place of my left bicep may have happened a while ago without my noticing. I happened to pick up my cup, and as I did so, my left arm, the one doing the picking up in this case, moved funny, flexed oddly. Instead of my bicep moving up and down, it sort of rotated, making a dimple in the crook of my elbow. Upon further testing, instead of a bulge, it just sat there, flabby and unmoving.
The other muscles in my arms are taking up the slack. My right bicep seems to maintain some semblance of working order. My latissimus dorsi flexes a bit still, as one might expect. My deltoids are somewhat active, although nowhere near what they used to be. My triceps still seem fairly good, if not strong at least responding to an intentional signal to move.
This, of course, is a signal of what is to come. In a few months the other muscles in my arms will start to fail me. They will continue on their weakening path until, like my biceps, they fail to move much at all. My flexors and abductors in my lower arm will work for a while yet, then, ultimately they will go the path of my upper arms.
I'm still reasonably capable, still able to lift, pull, push and carry to some degree. I can still wheel myself to some degree, still make a transfer although not well, still drive my truck. This is a slow moving process, so slow that I don't notice it some times, like my left bicep. I hadn't noticed it failing to flex until this morning, although it has been failing for some time. That's the way ALS works.
Saturday, 20 February 2016
Balance; I'm Losing It
I've been tipping over more lately. No, it's not alcohol related. As my core muscles weaken, I am less able to hold my body upright without additional support. If I am directly vertical, I am, in general, okay. But if I move slightly off center, particularly forwards or backwards, I can tip over rather rapidly, especially if I have nothing to hold on to.
This morning Katherine came in to give me a hug as I sat on the edge of the bed. She leaned in slightly and I started to topple backwards. I made that fearful wheeze you make when you suck in air quickly. I grabbed the M-rail to stabilize myself. I held on tightly to her with my other hand. I did not fall, but I felt like I might.
A similar thing happened when I was making the transfer to my wheelchair from the couch last night. In order to make this transfer, I first slide myself forwards from the couch onto the long, leather bench that I use as both a footstool and pseudo coffee table. Then, once seated on the bench I position the transfer board so that one end is under my butt and the other end is on the edge of my wheelchair seat. It's a slight uphill climb on the board, a small slope from me to my chair; I have to tip myself ever so slightly sideways to get onto the board. In doing that tip, I started to fall sideways. I grabbed the bench and held myself up, doing that whole sucking in air out of fear noise again.
Then there was the wheelchair transfer on Thursday where Katherine helped lift me from a temporary chair at the wheelchair shop, into my own chair. She lifted and I almost fell forward. Once again, sucking noise and panicked grabbing for a hand hold. Once again, racing heart and fear.
The odd thing is that I can still sit upright. As long as I manage my center of balance I'm fine. It's just when I begin to lose that balance, lose that center point, that I begin to go over. The complete fall has happened a couple of times; once at my Mom's while I was visiting last summer, once on the bench where I landed on the couch, a few times on my bed where I have simply allowed myself to fall backwards rather than fight it.
Balance is a tough thing to keep, both physically and emotionally. I would be nice if I could have at least one of those two on a consistent basis,
This morning Katherine came in to give me a hug as I sat on the edge of the bed. She leaned in slightly and I started to topple backwards. I made that fearful wheeze you make when you suck in air quickly. I grabbed the M-rail to stabilize myself. I held on tightly to her with my other hand. I did not fall, but I felt like I might.
A similar thing happened when I was making the transfer to my wheelchair from the couch last night. In order to make this transfer, I first slide myself forwards from the couch onto the long, leather bench that I use as both a footstool and pseudo coffee table. Then, once seated on the bench I position the transfer board so that one end is under my butt and the other end is on the edge of my wheelchair seat. It's a slight uphill climb on the board, a small slope from me to my chair; I have to tip myself ever so slightly sideways to get onto the board. In doing that tip, I started to fall sideways. I grabbed the bench and held myself up, doing that whole sucking in air out of fear noise again.
Then there was the wheelchair transfer on Thursday where Katherine helped lift me from a temporary chair at the wheelchair shop, into my own chair. She lifted and I almost fell forward. Once again, sucking noise and panicked grabbing for a hand hold. Once again, racing heart and fear.
The odd thing is that I can still sit upright. As long as I manage my center of balance I'm fine. It's just when I begin to lose that balance, lose that center point, that I begin to go over. The complete fall has happened a couple of times; once at my Mom's while I was visiting last summer, once on the bench where I landed on the couch, a few times on my bed where I have simply allowed myself to fall backwards rather than fight it.
Balance is a tough thing to keep, both physically and emotionally. I would be nice if I could have at least one of those two on a consistent basis,
Friday, 19 February 2016
A Moment Of Forever
Most days with ALS, I have this constant awareness of what this disease is doing to me. Most of the time I can feel it, feel the loss and damage. This means that most days I sense the loss of my ability and I have a sense that my life is shortened by it. Then, every once in a while, for a short moment or sometimes for hours on end, I somehow get into a place where I forget about ALS, where I feel like I am going to live as full and as long a life as anyone else. I have moments where I feel normal.
Yesterday I had one of those moments, as I was driving down Blackfoot Trail here in Calgary. For a moment, for a few whole long minutes, I felt good, like ALS wasn't doing what it's doing, like I could live for a very long time, just the way I was. It was a wonderful feeling, if only for a moment, to forget my reality, to slip into an idyll of thought where I had not just a future, but a long future, where I thought, if only for a moment, that I could go on like this, no problem at all.
Most of the times when I get these moments, I'll admit they are behind the wheel, that place where I feel most normal, most like the thousands of others driving the roads along with me. When I sit there in my truck, moving down the roadway, my focus is on something other than my body and how it is failing me, I feel like nobody else can see me, see my wheelchair, see my handicap.
There are other times like this, times when I am not in the truck, times when a reverie takes me away from my own cares and into some other land of thought. There are times, while sitting on the couch, Katherine snuggled in beside me, a book in hand, where I can almost forget the pain and discomfort of this disease. There places, like sitting in a coffee shop beside the ocean, sitting beside a lake feeling the wind and smelling the water, rolling along a forest walkway and hearing the bush move and seeing the animals.
These places, these times, take me away for a moment, a respite. Then they are gone, shadows in the mist, replaced by a harsher reality. I treasure them in my mind, recalling them, once again to wander away from ALS, to a place where I feel like I could live forever. But alas, I cannot. I cannot stay, I cannot live forever, I cannot escape my illness. No matter, there will be other moments, other places in my mind, other reveries. I can wait.
Yesterday I had one of those moments, as I was driving down Blackfoot Trail here in Calgary. For a moment, for a few whole long minutes, I felt good, like ALS wasn't doing what it's doing, like I could live for a very long time, just the way I was. It was a wonderful feeling, if only for a moment, to forget my reality, to slip into an idyll of thought where I had not just a future, but a long future, where I thought, if only for a moment, that I could go on like this, no problem at all.
Most of the times when I get these moments, I'll admit they are behind the wheel, that place where I feel most normal, most like the thousands of others driving the roads along with me. When I sit there in my truck, moving down the roadway, my focus is on something other than my body and how it is failing me, I feel like nobody else can see me, see my wheelchair, see my handicap.
There are other times like this, times when I am not in the truck, times when a reverie takes me away from my own cares and into some other land of thought. There are times, while sitting on the couch, Katherine snuggled in beside me, a book in hand, where I can almost forget the pain and discomfort of this disease. There places, like sitting in a coffee shop beside the ocean, sitting beside a lake feeling the wind and smelling the water, rolling along a forest walkway and hearing the bush move and seeing the animals.
These places, these times, take me away for a moment, a respite. Then they are gone, shadows in the mist, replaced by a harsher reality. I treasure them in my mind, recalling them, once again to wander away from ALS, to a place where I feel like I could live forever. But alas, I cannot. I cannot stay, I cannot live forever, I cannot escape my illness. No matter, there will be other moments, other places in my mind, other reveries. I can wait.
Thursday, 18 February 2016
Changing Things Up
I think it's time for me to start going out in public again, to start trying to be social once again. I caught myself thinking this morning, while brushing my teeth, that my life was beginning to get mundane, tedious, and this after only two weeks at home without going out. I am truly a social creature.
I've also decided to change things up a bit. I can't go to my regular trivia group thanks to the stairs at the location. For the time being it's best for me to keep my distance from the Cat 'n Fiddle. So that leaves me free to make some new choices, to choose new venues, new nights, new people. There are a lot of possibilities, choices to make, places to go and see. It will take a while for me to find my footing in this new world, but life is, after all, just one big adventure.
There are a couple of things I am looking for in choosing a place to go. First, and foremost, any place I go has to work for my wheelchair. Secondly, it has to be a friendly place with a welcoming atmosphere, preferably something with character and history. Third, trivia, I don't care about what night of the week so much as I do about consistency, availability, and fun. Oh, and beer would help too.
There must be places like this in Calgary, places where I will fit in. With any luck, some of my friends will join me, assuming it doesn't conflict with Tuesday nights. Maybe something on a Monday night, or any other night but Tuesday. I still need to keep one night a week open for dinner with my daughter Kate. Fortunately Katherine is encouraging me to do this, so she is open to whatever nights work.
So it's up to me now. I'm off to find adventure, or at least a new trivia hangout. Given who I am and what I am, I have no doubt I will find something fun and interesting. The searching itself will be enjoyable. Who knows what might happen?
I've also decided to change things up a bit. I can't go to my regular trivia group thanks to the stairs at the location. For the time being it's best for me to keep my distance from the Cat 'n Fiddle. So that leaves me free to make some new choices, to choose new venues, new nights, new people. There are a lot of possibilities, choices to make, places to go and see. It will take a while for me to find my footing in this new world, but life is, after all, just one big adventure.
There are a couple of things I am looking for in choosing a place to go. First, and foremost, any place I go has to work for my wheelchair. Secondly, it has to be a friendly place with a welcoming atmosphere, preferably something with character and history. Third, trivia, I don't care about what night of the week so much as I do about consistency, availability, and fun. Oh, and beer would help too.
There must be places like this in Calgary, places where I will fit in. With any luck, some of my friends will join me, assuming it doesn't conflict with Tuesday nights. Maybe something on a Monday night, or any other night but Tuesday. I still need to keep one night a week open for dinner with my daughter Kate. Fortunately Katherine is encouraging me to do this, so she is open to whatever nights work.
So it's up to me now. I'm off to find adventure, or at least a new trivia hangout. Given who I am and what I am, I have no doubt I will find something fun and interesting. The searching itself will be enjoyable. Who knows what might happen?
Wednesday, 17 February 2016
I'm Tired
I'm tired, absolutely exhausted. I've barely been up for two hours and I am ready to go back to bed. Writing this entry is almost too much to do. My eyelids are sliding down as I type, my focus and attention minimal at best.
This all started yesterday afternoon. Katherine and I had gone to see my counselor at the ALS clinic. We were all pleased with how well the dosage increase in my anti-depressant had worked for me over the last few days. As Katherine put it, "He's back". After our session, we got a coffee downstairs in the hospital and sat for a bit, enjoying the slack time, looking out over the prairie south of this most southerly point in Calgary, the location of the South Health Campus.
I was feeling good, in good spirits, so I said "Let's go for a drive instead of going right home." We did, detouring well west of Calgary on Highway 22X, all the way out to Bragg Creek, then over to Highway 1, then back east into the city. It was on the drive that the tiredness started to get to me. By the time we had made it home, I was done, fully exhausted.
Katherine put together dinner, a collection of our very tasty leftovers along with some Seafood Risotto out of the freezer. We ate, although I barely did justice to her efforts. Almost immediately after dinner, I transferred to the couch and began to doze intermittently, vainly attempting to watch some TV and keep my eyes open. By about 8:00 PM, Katherine was ready to head home, advising me not to stay up too late.
I tried to watch a bit more TV, but once again fell asleep on the couch. I awoke again at 1:00 AM, made the transfer to my wheelchair, and headed to bed. Alas, when I got there, I could not get to sleep. I was awake until at least 2:00 AM before I finally slept, and even then I found myself awake almost hourly, trying to re-adjust myself in bed. It takes a lot of effort and wakefulness for me to turn over at night.
All in all, I know I have gotten a fair bit of sleep since yesterday afternoon, yet still I am tired. After this bit of writing, and a bit of breakfast, I think I will go back to bed. I need more rest.
This all started yesterday afternoon. Katherine and I had gone to see my counselor at the ALS clinic. We were all pleased with how well the dosage increase in my anti-depressant had worked for me over the last few days. As Katherine put it, "He's back". After our session, we got a coffee downstairs in the hospital and sat for a bit, enjoying the slack time, looking out over the prairie south of this most southerly point in Calgary, the location of the South Health Campus.
I was feeling good, in good spirits, so I said "Let's go for a drive instead of going right home." We did, detouring well west of Calgary on Highway 22X, all the way out to Bragg Creek, then over to Highway 1, then back east into the city. It was on the drive that the tiredness started to get to me. By the time we had made it home, I was done, fully exhausted.
Katherine put together dinner, a collection of our very tasty leftovers along with some Seafood Risotto out of the freezer. We ate, although I barely did justice to her efforts. Almost immediately after dinner, I transferred to the couch and began to doze intermittently, vainly attempting to watch some TV and keep my eyes open. By about 8:00 PM, Katherine was ready to head home, advising me not to stay up too late.
I tried to watch a bit more TV, but once again fell asleep on the couch. I awoke again at 1:00 AM, made the transfer to my wheelchair, and headed to bed. Alas, when I got there, I could not get to sleep. I was awake until at least 2:00 AM before I finally slept, and even then I found myself awake almost hourly, trying to re-adjust myself in bed. It takes a lot of effort and wakefulness for me to turn over at night.
All in all, I know I have gotten a fair bit of sleep since yesterday afternoon, yet still I am tired. After this bit of writing, and a bit of breakfast, I think I will go back to bed. I need more rest.
Tuesday, 16 February 2016
In And Out Of The Truck
ALS is making it tougher and tougher for me to get into, and out of, my truck. I am now almost completely unable to lift myself that last inch from my wheelchair seat to the truck lift seat. Fortunately Katherine, who is with me almost every time I go anywhere in the truck, helps me with this. She grabs the back of my pants and, when I am ready to do the transfer, lifts me up while I push and shift sideways.
This, unfortunately, is not where the difficulty ends. I'm having increasing difficulty making a clean shift sideways onto the driver's seat. Once again it's about lifting my body and transferring. I can still do it, but it takes longer these days, and usually more than one sideways adjustment is involved. Plus there is the usual nonsense of lifting my legs into place, only it takes more effort with weaker arms.
Adding to all of this are the changes we've made to my wheelchair to make it stronger and to ensure it provides me the support I need. The new X-frame on the bottom, added last year to replace the one which had broken, is not easy to fold. Often it only folds half-way. If I give it a really powerful pull, and the stars align properly, I can mostly close it. But really powerful is not a part of my repertoire these days, so usually I am not that fortunate; it takes a couple of tries to get it to behave.
Never mind the recalcitrant X-frame. We've added the hard back, and it needs to be lifted in and out of the brackets now attached to the handle frame at the back of the chair. There are two pins for the top, and two pins for the bottom. The idea is that you put the bottom pins in first, then rotate the upper pins into the upper clips. Unfortunately my backpack, a permanent part of my wheelchair life, always seems to be in the way, pulling down on the handle frames, making life difficult. Sometimes the back goes in easy, just as designed. Other times, it's not so easy.
So to get into the truck, first I must transfer. Then I must remove the seat back and my cushion. After removal of these parts, which I fling into the truck to rest on the console, I must fold the chair. With a few attempts at folding, it's ready for pickup by the lift, and in it goes. Then I can finish getting in.
To get out of the truck, first I must transfer to the lift seat and lower myself. Next, out comes the wheelchair, sometimes easily, in fact most times easily. I unfold it and fight to get the back into position. It's not easy very often. Then my cushion, a simple thing but still, it seems, always backwards or sideways or somehow out of form and needing re-positioning.
With everything in place, I can finish the transfer and, with great effort, lift my feet onto the footpads of the wheelchair, close my truck door, and roll away. It's almost ironic that the easiest part of driving my truck is the actual driving, and the hardest part, the longest part, is getting in and out. Thank goodness I am in Alberta, where it doesn't rain a lot. Imagine all that slow effort in a west coast downpour.
This, unfortunately, is not where the difficulty ends. I'm having increasing difficulty making a clean shift sideways onto the driver's seat. Once again it's about lifting my body and transferring. I can still do it, but it takes longer these days, and usually more than one sideways adjustment is involved. Plus there is the usual nonsense of lifting my legs into place, only it takes more effort with weaker arms.
Adding to all of this are the changes we've made to my wheelchair to make it stronger and to ensure it provides me the support I need. The new X-frame on the bottom, added last year to replace the one which had broken, is not easy to fold. Often it only folds half-way. If I give it a really powerful pull, and the stars align properly, I can mostly close it. But really powerful is not a part of my repertoire these days, so usually I am not that fortunate; it takes a couple of tries to get it to behave.
Never mind the recalcitrant X-frame. We've added the hard back, and it needs to be lifted in and out of the brackets now attached to the handle frame at the back of the chair. There are two pins for the top, and two pins for the bottom. The idea is that you put the bottom pins in first, then rotate the upper pins into the upper clips. Unfortunately my backpack, a permanent part of my wheelchair life, always seems to be in the way, pulling down on the handle frames, making life difficult. Sometimes the back goes in easy, just as designed. Other times, it's not so easy.
So to get into the truck, first I must transfer. Then I must remove the seat back and my cushion. After removal of these parts, which I fling into the truck to rest on the console, I must fold the chair. With a few attempts at folding, it's ready for pickup by the lift, and in it goes. Then I can finish getting in.
To get out of the truck, first I must transfer to the lift seat and lower myself. Next, out comes the wheelchair, sometimes easily, in fact most times easily. I unfold it and fight to get the back into position. It's not easy very often. Then my cushion, a simple thing but still, it seems, always backwards or sideways or somehow out of form and needing re-positioning.
With everything in place, I can finish the transfer and, with great effort, lift my feet onto the footpads of the wheelchair, close my truck door, and roll away. It's almost ironic that the easiest part of driving my truck is the actual driving, and the hardest part, the longest part, is getting in and out. Thank goodness I am in Alberta, where it doesn't rain a lot. Imagine all that slow effort in a west coast downpour.
Monday, 15 February 2016
Just Some Random Thinking
Some days I think I would like to have someone do a video of what I go through to get up, go to the bathroom, and get dressed each morning. I feel like writing about it doesn't do it justice. On the other hand, the video would probably be X-rated due to profanity and nudity. Nobody really wants to hear and see what mornings are like for me.
The only really good thing about a morning for me is that I get to live another day. It's another opportunity to feel the warmth of the sun on my face, the brisk winter wind on my cheeks. It's another opportunity to enjoy a hot cup of coffee, an orange, a slice of cheese. It's another chance to see humour, to laugh, to find something funny in my life. A laugh a day is what really keeps the doctor away.
Outside the sky is a soft, gentle blue, stretching, as it does here on the edge of the prairie, off to an invisible far and distant horizon, flocked with light, cotton batten clouds that slowly drift east and south, off across the great plains of North America. It is warm, at least in Calgary terms, in terms of a winter's day here in the great white north. The temperature right now is about 6C, or about 47F. It's been warm enough lately, thanks to the Chinooks rolling through, that the snow is gone from the parking lot across the street, from the crosswalk, from the roadway.
It's nice enough to entice me to make the transfer to my power wheelchair, to make the adventure out, across the street, to the mall. It's nice enough to make me once again want to be outside, enjoying the air, hearing the sounds of life. It's nice enough to make me want to go through the hassle of getting up and getting dressed. It's hard to enjoy life if you don't get out of bed. That's the first requirement.
The only really good thing about a morning for me is that I get to live another day. It's another opportunity to feel the warmth of the sun on my face, the brisk winter wind on my cheeks. It's another opportunity to enjoy a hot cup of coffee, an orange, a slice of cheese. It's another chance to see humour, to laugh, to find something funny in my life. A laugh a day is what really keeps the doctor away.
Outside the sky is a soft, gentle blue, stretching, as it does here on the edge of the prairie, off to an invisible far and distant horizon, flocked with light, cotton batten clouds that slowly drift east and south, off across the great plains of North America. It is warm, at least in Calgary terms, in terms of a winter's day here in the great white north. The temperature right now is about 6C, or about 47F. It's been warm enough lately, thanks to the Chinooks rolling through, that the snow is gone from the parking lot across the street, from the crosswalk, from the roadway.
It's nice enough to entice me to make the transfer to my power wheelchair, to make the adventure out, across the street, to the mall. It's nice enough to make me once again want to be outside, enjoying the air, hearing the sounds of life. It's nice enough to make me want to go through the hassle of getting up and getting dressed. It's hard to enjoy life if you don't get out of bed. That's the first requirement.
Sunday, 14 February 2016
ALS Is A Tough Disease
The anti-depressants are definitely doing their job. I can say, without equivocation, that I am feeling better, feeling more in control of my emotions, feeling more in control of my behaviour. This is a good thing. Medications are supposed to help with the side effects of this disease, and they are.
There are no medications to relieve the reality of ALS, no treatments to make the disease itself retreat. Taking medications for depression is like lighting a candle in the dark of night. It softens the darkness nearby, but the deep gloom of the midnight hour remains, just outside the reach of the candle. The physical damage of ALS continues, no matter what other medications I take.
Taking the anti-depressants does not take away my sense of this illness. What they do is take away the sense of helplessness, the sense that nothing is worth living for. If you had asked me just a few days ago if I had anything which brought me pleasure, anything which was worth living for, I would have said "very little". I was looking into the darkness and seeing only darkness in return.
Today I woke up with ALS. I still have those feelings at the start of the day, but they don't include the feeling of wishing I had died during the night. I can think of things I enjoy, think of things worth living for. I have Katherine. I have my children and grand-children. I have my friends. I don't feel like crying; mostly I am back to my normal self of seeing the humour in almost everything. I love to laugh.
Yet even in the midst of the light from that candle in the darkness, I can still see it out there, the damage wrought by this disease, the damage worsening every day. I can still see the increasing weakness in my arms. I can still sense the increasing inability to use my core muscles. My legs remain dead. These are facts, not emotions. These are reality, not some conjuring of an ill mind.
Anti-depressants don't cure ALS. They manage a symptom; depression. They manage other symptoms, those from FTD. Anti-depressants make my life better to live, but they don't make it easier to live. This is still a tough disease, no matter how you feel.
There are no medications to relieve the reality of ALS, no treatments to make the disease itself retreat. Taking medications for depression is like lighting a candle in the dark of night. It softens the darkness nearby, but the deep gloom of the midnight hour remains, just outside the reach of the candle. The physical damage of ALS continues, no matter what other medications I take.
Taking the anti-depressants does not take away my sense of this illness. What they do is take away the sense of helplessness, the sense that nothing is worth living for. If you had asked me just a few days ago if I had anything which brought me pleasure, anything which was worth living for, I would have said "very little". I was looking into the darkness and seeing only darkness in return.
Today I woke up with ALS. I still have those feelings at the start of the day, but they don't include the feeling of wishing I had died during the night. I can think of things I enjoy, think of things worth living for. I have Katherine. I have my children and grand-children. I have my friends. I don't feel like crying; mostly I am back to my normal self of seeing the humour in almost everything. I love to laugh.
Yet even in the midst of the light from that candle in the darkness, I can still see it out there, the damage wrought by this disease, the damage worsening every day. I can still see the increasing weakness in my arms. I can still sense the increasing inability to use my core muscles. My legs remain dead. These are facts, not emotions. These are reality, not some conjuring of an ill mind.
Anti-depressants don't cure ALS. They manage a symptom; depression. They manage other symptoms, those from FTD. Anti-depressants make my life better to live, but they don't make it easier to live. This is still a tough disease, no matter how you feel.
Saturday, 13 February 2016
Blood In The Toilet
When my Dad was in the end stage of his multiple cancers, shortly before he died, he was in the hospital for a short period of time. During that time he had a catheter inserted into his penis. They took it out when they sent him home. The first time he went pee, it was filled with blood. His hands were shaking, so it went all over the toilet and nearby floor. My brother, Adam, and I went in to clean it up. Adam said to me, "This isn't normal, is it?"
It isn't. It isn't normal with a healthy person. The catheter procedure in my Dad was the likely culprit. As far as I know, the problem went away soon after, but I never found out for sure. Seeing blood in your urine, or in your stool, is a clear sign of a serious problem.
As a man, it is a scary thing to look in the toilet after relieving myself of my colon contents only to see that the water is bright red with blood. I can only imagine what it must be like for a young girl going through menstruation for the first time, especially if she has not been educated in any way around the subject. For me, it's just plain wrong.
In my case that bright red blood is a sign of hemorrhoids, those thinned blood vessels or small lumps of skin just inside the rectum. I have them thanks to the wheelchair. I sit all the time, putting continuous strain on that part of my anatomy. My rear end hurts all the time from sitting. On top of that the loss of core muscle forces ever increasing strain when I void my bowels. This also increases hemorrhoidal tissues and the associated bleeding. Add to that the pressure of my additional weight plus the impact of the anti-coagulants and blood thinners I have to take, and you have a sure fire combination for blood in the toilet.
Katherine tells me it's time to get a donut cushion to relieve the sitting pressure; she also assures me I won't die from it. I think it's a sign that I need more fibre in my diet. Either way, it's another one of the indignities of this disease, at least the way it's working in me. I suspect other PALS go through this indignity too, as do pregnant women, people over 45, overweight people, and all kinds of other people. Since about half of Canadians will experience hemorrhoids at some time in their life, I guess I shouldn't be surprised that I get them.
It just freaks me out to see all that blood in the toilet.
It isn't. It isn't normal with a healthy person. The catheter procedure in my Dad was the likely culprit. As far as I know, the problem went away soon after, but I never found out for sure. Seeing blood in your urine, or in your stool, is a clear sign of a serious problem.
As a man, it is a scary thing to look in the toilet after relieving myself of my colon contents only to see that the water is bright red with blood. I can only imagine what it must be like for a young girl going through menstruation for the first time, especially if she has not been educated in any way around the subject. For me, it's just plain wrong.
In my case that bright red blood is a sign of hemorrhoids, those thinned blood vessels or small lumps of skin just inside the rectum. I have them thanks to the wheelchair. I sit all the time, putting continuous strain on that part of my anatomy. My rear end hurts all the time from sitting. On top of that the loss of core muscle forces ever increasing strain when I void my bowels. This also increases hemorrhoidal tissues and the associated bleeding. Add to that the pressure of my additional weight plus the impact of the anti-coagulants and blood thinners I have to take, and you have a sure fire combination for blood in the toilet.
Katherine tells me it's time to get a donut cushion to relieve the sitting pressure; she also assures me I won't die from it. I think it's a sign that I need more fibre in my diet. Either way, it's another one of the indignities of this disease, at least the way it's working in me. I suspect other PALS go through this indignity too, as do pregnant women, people over 45, overweight people, and all kinds of other people. Since about half of Canadians will experience hemorrhoids at some time in their life, I guess I shouldn't be surprised that I get them.
It just freaks me out to see all that blood in the toilet.
Friday, 12 February 2016
I'm Feeling Better
I've gone a full 24 hours without contemplating suicide. I've been busy, active, engaged in doing things. I've had conversations and, in the midst of active chatter, stopped myself and thought about whether a certain subject or choice of phrasing was appropriate. I've even had a quiet moment, where my mind was empty of thought, and it stayed that way for a few moments. I smiling as I write, even though I am alone, sitting in my wheelchair, in the lonely quiet of my small apartment.
I think the medication change is working.
It's an amazing thing, the way a simple drug adjustment can make such a difference in my mood, in my attitude, in my desire to be alive. The reprieve from depression, the relief from emotional stress, makes it possible for me to see the beauty in the fog outside my window, to see the wonder of a pine cone offering itself up as food for the magpies in my tree, to stop once again and remember that I am not just dying from ALS, but living with it.
Part of me wants to say that I should have seen this coming on, this slide into a black pit. In retrospect I can see events which should have warned me. But I didn't see them, not until it was so obvious that everyone else could see something was wrong with me. The reason is simple. I didn't see the changes for the same reason you don't see the physical changes associated with ALS; they are incrementally small, and you are in the midst of them while they are happening. It takes an event to let you know something bad has happened.
I'm not out of the woods yet. I have more apologies to make, more explanations to give. I have to give myself a while to get stable, to become less up and down. I have to see if this change takes hold, and stays with me for a while. If it does, great! If not, then we adjust the dosage once again.
I think the medication change is working.
It's an amazing thing, the way a simple drug adjustment can make such a difference in my mood, in my attitude, in my desire to be alive. The reprieve from depression, the relief from emotional stress, makes it possible for me to see the beauty in the fog outside my window, to see the wonder of a pine cone offering itself up as food for the magpies in my tree, to stop once again and remember that I am not just dying from ALS, but living with it.
Part of me wants to say that I should have seen this coming on, this slide into a black pit. In retrospect I can see events which should have warned me. But I didn't see them, not until it was so obvious that everyone else could see something was wrong with me. The reason is simple. I didn't see the changes for the same reason you don't see the physical changes associated with ALS; they are incrementally small, and you are in the midst of them while they are happening. It takes an event to let you know something bad has happened.
I'm not out of the woods yet. I have more apologies to make, more explanations to give. I have to give myself a while to get stable, to become less up and down. I have to see if this change takes hold, and stays with me for a while. If it does, great! If not, then we adjust the dosage once again.
Thursday, 11 February 2016
Forgiving Myself
I was going to write this morning about starting the new drug regimen for my FTD and depression. But I won't. It doesn't really matter. I've started it, and we will have to wait a few days to see if it makes a difference. What really matters is that I have a plan, an action to take control of my life once again, a chance to get past the psychological effects of this disease. At least this can be treated.
Instead, I want to talk about forgiveness. I am perhaps the hardest person I know when it comes to forgiving myself, and one of the easiest I know when it comes to forgiving others. Self-forgiveness takes so much time, and so much effort for me. I think, at the heart of it, is this base sense within myself that I am not worthy of forgiveness, that every error I make, every stumble in my life, is enormous, stupid, foolish, and so many other self-destroying terms.
I can recall errors from many years past and still feel the shame, the self-condemnation associated with them. I can still feel the powerful self-loathing, often over something so small, so simple, that other people will have long since forgotten the event. In spite of years going by, I can recall some event where I clearly embarrassed myself, or clearly hurt someone else, and feel myself judging myself and finding myself wanting, failed, damaged, or just plain stupid. I should have known better.
The thing is, I suspect I have made no more, nor fewer, mistakes than anyone else around me. I am most likely just sort of average when it comes to my life failings. Certainly there are those who have done better; certainly there are those who have done worse. In this area, I try very hard not to compare; it never comes out good for me. I have to just know that I am mostly a fairly ordinary person from this perspective, that I make mistakes as does everyone else.
All I really have to learn is how to forgive myself, just as I forgive others. I seem to be able to let go of others trespasses in life, now all I need to do is let go of my own. This "growing up" stuff never stops. Even at age 60 I am still working through things in my life. Having ALS just makes it a bit more complicated, a bit more challenging.
Instead, I want to talk about forgiveness. I am perhaps the hardest person I know when it comes to forgiving myself, and one of the easiest I know when it comes to forgiving others. Self-forgiveness takes so much time, and so much effort for me. I think, at the heart of it, is this base sense within myself that I am not worthy of forgiveness, that every error I make, every stumble in my life, is enormous, stupid, foolish, and so many other self-destroying terms.
I can recall errors from many years past and still feel the shame, the self-condemnation associated with them. I can still feel the powerful self-loathing, often over something so small, so simple, that other people will have long since forgotten the event. In spite of years going by, I can recall some event where I clearly embarrassed myself, or clearly hurt someone else, and feel myself judging myself and finding myself wanting, failed, damaged, or just plain stupid. I should have known better.
The thing is, I suspect I have made no more, nor fewer, mistakes than anyone else around me. I am most likely just sort of average when it comes to my life failings. Certainly there are those who have done better; certainly there are those who have done worse. In this area, I try very hard not to compare; it never comes out good for me. I have to just know that I am mostly a fairly ordinary person from this perspective, that I make mistakes as does everyone else.
All I really have to learn is how to forgive myself, just as I forgive others. I seem to be able to let go of others trespasses in life, now all I need to do is let go of my own. This "growing up" stuff never stops. Even at age 60 I am still working through things in my life. Having ALS just makes it a bit more complicated, a bit more challenging.
Wednesday, 10 February 2016
Venlafaxine And Therapy
I've been struggling with depression of late, very serious depression. Of course having ALS can depress the shit out of you, at least it does out of me. I wake up each day wondering if I should even bother. The struggle to sit up, the ache of failing muscles, the fight to dress myself; then there is the whole day in a wheelchair in front of me after that. Depression not only makes sense, I would be more than just a little odd if I didn't struggle with it.
I take medication for depression, but it seems to have failed me of late. I think of suicide almost constantly, planning how, wondering if tonight is the right night. I haven't done it yet, clearly, but these thoughts are rarely far from my mind, these ideas constantly percolating, waiting for the right moment. I haven't done it yet, but I want to. I simply lack the impulse at the right time.
Today I went to the ALS clinic and discussed this with the counselor and the neurologist. As expected we are increasing the depression medication I take on a daily basis. There are limits to the rate at which you can put this stuff into your system, so my dosage will go up slightly tomorrow, then, after two weeks, we will review it again to see if it still working. Hopefully the signal will be a lowered impulse to "off" myself.
This is the same medication which helps with impulse control, feeling like I want to cry all the time, and my emotional variability, all effects of FrontoTemporal Dysfunction. It's not really surprising if you think about it. These other issues are an outflow of my emotional and mental state associated with failing neurons. They are directly related to my depression as well.
I'm not crazy, or at least not any more than I am normally crazy. My physical illness has a mental component as well. Since it's taking place in my brain, that should come as no surprise. My hope is that my increase in Venlafaxine will take care of it all. Plus, a little therapy couldn't hurt. After all, we all need a little therapy, right?
I take medication for depression, but it seems to have failed me of late. I think of suicide almost constantly, planning how, wondering if tonight is the right night. I haven't done it yet, clearly, but these thoughts are rarely far from my mind, these ideas constantly percolating, waiting for the right moment. I haven't done it yet, but I want to. I simply lack the impulse at the right time.
Today I went to the ALS clinic and discussed this with the counselor and the neurologist. As expected we are increasing the depression medication I take on a daily basis. There are limits to the rate at which you can put this stuff into your system, so my dosage will go up slightly tomorrow, then, after two weeks, we will review it again to see if it still working. Hopefully the signal will be a lowered impulse to "off" myself.
This is the same medication which helps with impulse control, feeling like I want to cry all the time, and my emotional variability, all effects of FrontoTemporal Dysfunction. It's not really surprising if you think about it. These other issues are an outflow of my emotional and mental state associated with failing neurons. They are directly related to my depression as well.
I'm not crazy, or at least not any more than I am normally crazy. My physical illness has a mental component as well. Since it's taking place in my brain, that should come as no surprise. My hope is that my increase in Venlafaxine will take care of it all. Plus, a little therapy couldn't hurt. After all, we all need a little therapy, right?
Tuesday, 9 February 2016
Pots And Pans
My mind is a collection of random, disconnected thoughts this morning, rather like a kitchen cupboard in a mild earthquake, the pots and pans rattling and banging against one another, making a discordant noise, pointless, tuneless, loud. I'm having trouble pulling my thoughts together, gaining hold of any particular series of ideas or points. I'm tired. I'm sad. I'm in pain. I'm dodging Katherine's annoyance with me for drinking a whole bottle of wine alone at home last night.
At least I got the laundry done last night, if not folded. It takes a great deal of effort for me to do my own laundry these days. The act of sorting it before washing, hauling it down to the laundry room down the hallway in my apartment, forcing my way over the lip and through the heavy fire doors that bar the way between me and the promised land of a washer and dryer. Then I have to load the machines, lifting laundry high out of my basket and into the bin of my chosen target, followed by the long reach across the machine to the controls. After washing, there is the water loaded transfer of clothes from the depths of the washing machine, across the room to the bowels of the dryer, facing me there with another set of controls far across an enameled, steel frame.
Doing the laundry requires three long trips from my apartment to the laundry room, one for loading the washing machine, one for loading the dryer, and a return trip with completed laundry, each of those trips wearing on me like a marathon runner in an Olympic race. In between, while I wait for the machinery to do its stuff, all there is for me to do is watch TV and drink a glass of wine. It's a wonder that one bottle is my total consumption.
Katherine folded the laundry this morning, the whole task being too much for me in a single night. While she moves about, putting things away, glaring at me on the passage by, I sit and type, drinking my coffee, eating my Honeycombs breakfast cereal. I bought a box for fun the other day, the box with the Star Wars character of Kylo Ren on it. No reason, really. I just wanted some. No breakfast in bed for me this morning; she was busy folding my laundry.
There are so many other things rattling about inside my brain, many of them products of the deep depression I have been dealing with lately. Questions about the pointlessness of my life, thoughts about suicide, wondering if there is anything I can focus on today. Then I realize, my dishwasher is broken. The filter needs removal and cleaning. Of course I can't do it myself, but if I can convince Katherine to help me, I can once again feel useful, like I can accomplish something. That's something, at least for now.
At least I got the laundry done last night, if not folded. It takes a great deal of effort for me to do my own laundry these days. The act of sorting it before washing, hauling it down to the laundry room down the hallway in my apartment, forcing my way over the lip and through the heavy fire doors that bar the way between me and the promised land of a washer and dryer. Then I have to load the machines, lifting laundry high out of my basket and into the bin of my chosen target, followed by the long reach across the machine to the controls. After washing, there is the water loaded transfer of clothes from the depths of the washing machine, across the room to the bowels of the dryer, facing me there with another set of controls far across an enameled, steel frame.
Doing the laundry requires three long trips from my apartment to the laundry room, one for loading the washing machine, one for loading the dryer, and a return trip with completed laundry, each of those trips wearing on me like a marathon runner in an Olympic race. In between, while I wait for the machinery to do its stuff, all there is for me to do is watch TV and drink a glass of wine. It's a wonder that one bottle is my total consumption.
Katherine folded the laundry this morning, the whole task being too much for me in a single night. While she moves about, putting things away, glaring at me on the passage by, I sit and type, drinking my coffee, eating my Honeycombs breakfast cereal. I bought a box for fun the other day, the box with the Star Wars character of Kylo Ren on it. No reason, really. I just wanted some. No breakfast in bed for me this morning; she was busy folding my laundry.
There are so many other things rattling about inside my brain, many of them products of the deep depression I have been dealing with lately. Questions about the pointlessness of my life, thoughts about suicide, wondering if there is anything I can focus on today. Then I realize, my dishwasher is broken. The filter needs removal and cleaning. Of course I can't do it myself, but if I can convince Katherine to help me, I can once again feel useful, like I can accomplish something. That's something, at least for now.
Monday, 8 February 2016
Roast Lamb Leftovers
I had a dinner party last night; not a big party, just five guests plus Katherine and I. My plan is to have more, smaller groups over, more often, and to ask all of my friends to a smaller dinner at some point. I'll still have some big parties, but these smaller groups are better for me these days, as my ability to deal with the excitement and stimulation of a large group gets worse and worse.
When I say "I had a dinner party". it should really be "Katherine and I had a dinner party". While I can still do most of what is needed to make a decent dinner, the effort involved is substantial for me. I know as things get worse that I will need more help, but even now I appreciate all the work and help that Katherine puts into making these dinners work for me.
My friends help too. From the moment they show up, they ask what they can do to help. They bring food, lots of food. I have enough dessert in my fridge to feed a small army. I am at the stage where this is really the only way it can work. To make a whole dinner as well as a dessert, all on my own, would simply exhaust me to the point of tears.
I love having them over. I come alive in company. Even when it becomes too much, I don't want them to leave. Being with other people is what keeps me going. Being with Katherine is a big part of that. She keeps me going. I am an extrovert, through and through. I cannot imaging a solo life, a life without others in it, constantly.
Of course the real upside of a dinner party is leftovers. My breakfast today, so far, has consisted of three chunks of roast lamb, and a cup of coffee. Next I am going to have at least one helping of one of the three desserts remaining. I might even have two. It's a good thing, this eating, being able to enjoy good food and drink. When I lose that, all really will be lost.
When I say "I had a dinner party". it should really be "Katherine and I had a dinner party". While I can still do most of what is needed to make a decent dinner, the effort involved is substantial for me. I know as things get worse that I will need more help, but even now I appreciate all the work and help that Katherine puts into making these dinners work for me.
My friends help too. From the moment they show up, they ask what they can do to help. They bring food, lots of food. I have enough dessert in my fridge to feed a small army. I am at the stage where this is really the only way it can work. To make a whole dinner as well as a dessert, all on my own, would simply exhaust me to the point of tears.
I love having them over. I come alive in company. Even when it becomes too much, I don't want them to leave. Being with other people is what keeps me going. Being with Katherine is a big part of that. She keeps me going. I am an extrovert, through and through. I cannot imaging a solo life, a life without others in it, constantly.
Of course the real upside of a dinner party is leftovers. My breakfast today, so far, has consisted of three chunks of roast lamb, and a cup of coffee. Next I am going to have at least one helping of one of the three desserts remaining. I might even have two. It's a good thing, this eating, being able to enjoy good food and drink. When I lose that, all really will be lost.
Sunday, 7 February 2016
Home Alone, The Rum And Coke Version
I was home along yesterday. Katherine and I had lunch together, then she left for her day. She has a regular church fellowship activity on the first and third Saturday of each month. They are important to her, and that makes them important to me. What it means, though, is that my day alone started shortly after getting up, and just ended a few minutes ago when she came back.
It was a quiet kind of day, so quiet that at 2:35 PM I decided to take a nap. I remember the time because I looked at my clock as I lay down to sleep. I needed a nap. I was falling asleep at the table while reading on my computer. After laying down, the next thing I really remember is waking up at 9:00 PM in the evening. I had a 6 1/2 hour nap. I'm always tired. I'm always exhausted. I must have needed the rest.
When I finally got up, I started to watch TV. First it was the hockey game, the Vancouver Canucks losing badly to the Calgary Flames. The Canucks are definitely not a playoff team this year. Then I started to watch some of my shows on Netflix. I like Netflix. I like to binge watch shows. And I am not a fan of commercial TV, something I find an intellectual wasteland.
Last night it started with a documentary on the history of mathematics, rekindling in me a love for numbers lost long ago. It was kindled enough for me to send a message to a friend asking if he had a text on algebra and calculus which I might borrow, so I could play with some of those numbers once again. I'm more of a physics guy than a math guy, but it's really all about the numbers in the long run.
As I sat there, I drank Rum and Coke; the rum was the free bottle given to us at the hotel. I drank about half of a 750ml bottle over the next few hours. The Coke was purchased on sale at Co-op for $1.00 per 2L bottle. My whole evening cost me slightly over $2.00, if you count the leftover chili I ate for dinner.
Katherine doesn't like it when I drink that much. She worries about my well being, my health. Me? I don't worry so much. I was at home. I was alone. Nobody else was involved. Nobody else got hurt. Nobody was touched inappropriately. Maybe 6 or 7 Rum and Cokes might be too much if you drank them in a couple of hours, but over the space of 5 or 6 hours, it's not much at all. I had a nice, quiet night. I was safe at home. What's wrong with that? Nothing, as far as I can tell.
To all who might consider this a problem, I ask you this. What's worse? Staying home alone and spending an evening napping, watching TV, and drinking rum and coke for a total cost of about $2.00, or going to a bar and spending 15 times that much on beer, then driving home. To those who say I shouldn't drink at home alone, where were you last night when I needed you?
It was a quiet kind of day, so quiet that at 2:35 PM I decided to take a nap. I remember the time because I looked at my clock as I lay down to sleep. I needed a nap. I was falling asleep at the table while reading on my computer. After laying down, the next thing I really remember is waking up at 9:00 PM in the evening. I had a 6 1/2 hour nap. I'm always tired. I'm always exhausted. I must have needed the rest.
When I finally got up, I started to watch TV. First it was the hockey game, the Vancouver Canucks losing badly to the Calgary Flames. The Canucks are definitely not a playoff team this year. Then I started to watch some of my shows on Netflix. I like Netflix. I like to binge watch shows. And I am not a fan of commercial TV, something I find an intellectual wasteland.
Last night it started with a documentary on the history of mathematics, rekindling in me a love for numbers lost long ago. It was kindled enough for me to send a message to a friend asking if he had a text on algebra and calculus which I might borrow, so I could play with some of those numbers once again. I'm more of a physics guy than a math guy, but it's really all about the numbers in the long run.
As I sat there, I drank Rum and Coke; the rum was the free bottle given to us at the hotel. I drank about half of a 750ml bottle over the next few hours. The Coke was purchased on sale at Co-op for $1.00 per 2L bottle. My whole evening cost me slightly over $2.00, if you count the leftover chili I ate for dinner.
Katherine doesn't like it when I drink that much. She worries about my well being, my health. Me? I don't worry so much. I was at home. I was alone. Nobody else was involved. Nobody else got hurt. Nobody was touched inappropriately. Maybe 6 or 7 Rum and Cokes might be too much if you drank them in a couple of hours, but over the space of 5 or 6 hours, it's not much at all. I had a nice, quiet night. I was safe at home. What's wrong with that? Nothing, as far as I can tell.
To all who might consider this a problem, I ask you this. What's worse? Staying home alone and spending an evening napping, watching TV, and drinking rum and coke for a total cost of about $2.00, or going to a bar and spending 15 times that much on beer, then driving home. To those who say I shouldn't drink at home alone, where were you last night when I needed you?
Saturday, 6 February 2016
It's Time To Change My Meds
I've been crying a lot for the last few days. And when I am not crying, there are tears just below the surface. I'm sad, terribly sad. Even if you can't see it, it's there. I'm struggling with my behaviour, with impulse control, although I hide it well most of the time, sometimes it shows up in the most embarrassing of moments and ways. And I am forgetting things; for the last few days I've wanted to log into my laptop with my password from two years ago. I have to stop and think to remember my current password.
All of this is almost certainly a result of FrontoTemporal Dysfunction. I've written about it before, but it rears its ugly head once again. Studies show that up to 20% of ALS patients demonstrate dementia, roughly 30% of ALS patients develop impairment without dementia, and up to half of ALS patients are cognitively normal. I am clearly not normal; I wasn't normal before ALS so I certainly can't expect to be normal these days. Nor do I have demetia, That leaves me in the 30% who develop cognitive impairment without dementia. So I look and seem like I always am, yet I get to be even sicker than if I had just plain old, everyday ALS.
I have the most common expression of FTD, that of loss of executive function. This loss shows up as difficulties in judgment, regulating my emotions, a slow down in my memory recall, and a loss of my already weak ability to be self-aware. For me, you can see it in my increased anxiety, in how easily and how much I cry, in my tendency to engage in socially inappropriate touching, in my inability to recall something I am sure I know, and in my general depression level.
Fortunately, there is medication for this. Fortunately I can mostly live a life without constant embarrassment, without living on the edge of tears, without forgetting things all the time. Unfortunately that medication loses its effectiveness over time, or rather my body builds up an immunity to the drug. That means I can slowly slip back into this madness without even knowing it, all the while thinking I am medicating against it.
The slow slip into the grip of FTD is like the slow slip towards death from ALS. It happens so slightly, so minutely, that you don't even see it. Forgetful? Everyone is forgetful at my age. Depressed? Of course I am depressed. I have ALS. I'm dying slowly, cruelly. Inappropriate words or actions? That should be my middle name. Anxiety? Well, that one at least is a new one for me.
It's easy to see how I could get to what is essentially an un-medicated state without even know it. It's scary, it's frightening. Especially the suicidal part. Suicidal thoughts are a part of living with ALS. What you don't see is the increase in them. These days even the smallest distress makes me think of killing myself. Say something rude? I want to kill myself. Do something stupid? I want to kill myself. It's all about over-exaggeration of feelings and responses.
Of course I am headed back to see the doctor. It's time to change my medications, time to get this monster back into its cage. In the meantime, I have apologies to make. I'll probably stay at home for a while. Clearly I am not safe outside without supervision. I am once again a child.
All of this is almost certainly a result of FrontoTemporal Dysfunction. I've written about it before, but it rears its ugly head once again. Studies show that up to 20% of ALS patients demonstrate dementia, roughly 30% of ALS patients develop impairment without dementia, and up to half of ALS patients are cognitively normal. I am clearly not normal; I wasn't normal before ALS so I certainly can't expect to be normal these days. Nor do I have demetia, That leaves me in the 30% who develop cognitive impairment without dementia. So I look and seem like I always am, yet I get to be even sicker than if I had just plain old, everyday ALS.
I have the most common expression of FTD, that of loss of executive function. This loss shows up as difficulties in judgment, regulating my emotions, a slow down in my memory recall, and a loss of my already weak ability to be self-aware. For me, you can see it in my increased anxiety, in how easily and how much I cry, in my tendency to engage in socially inappropriate touching, in my inability to recall something I am sure I know, and in my general depression level.
Fortunately, there is medication for this. Fortunately I can mostly live a life without constant embarrassment, without living on the edge of tears, without forgetting things all the time. Unfortunately that medication loses its effectiveness over time, or rather my body builds up an immunity to the drug. That means I can slowly slip back into this madness without even knowing it, all the while thinking I am medicating against it.
The slow slip into the grip of FTD is like the slow slip towards death from ALS. It happens so slightly, so minutely, that you don't even see it. Forgetful? Everyone is forgetful at my age. Depressed? Of course I am depressed. I have ALS. I'm dying slowly, cruelly. Inappropriate words or actions? That should be my middle name. Anxiety? Well, that one at least is a new one for me.
It's easy to see how I could get to what is essentially an un-medicated state without even know it. It's scary, it's frightening. Especially the suicidal part. Suicidal thoughts are a part of living with ALS. What you don't see is the increase in them. These days even the smallest distress makes me think of killing myself. Say something rude? I want to kill myself. Do something stupid? I want to kill myself. It's all about over-exaggeration of feelings and responses.
Of course I am headed back to see the doctor. It's time to change my medications, time to get this monster back into its cage. In the meantime, I have apologies to make. I'll probably stay at home for a while. Clearly I am not safe outside without supervision. I am once again a child.
Friday, 5 February 2016
I'm Sorry
I try to be a good person. I try very hard. I work hard at caring for the needs of others, at listening to others, at considering other people in my decisions. Yet I so consistently fail at this, so consistently behave in ways or do things that make me ashamed of myself. I offer no excuse. I am simply imperfect, unable to be all that humanity would want of me.
I know I often speak before thinking, or at least I think I speak before thinking. It's interesting to watch others, people I know very well, to see them deliberate before they respond, to see them take time to formulate a response. These people do so much better in their relationships with others, yet it seems I am unable to develop this ability. I seemed destined to be the way I am, quick to respond, slow to think about the impact of my response.
All I can do at the end is say that I am sorry if I hurt you, sorry if my actions were inappropriate to the situation, sorry if my words were the wrong ones. I spend a lot of time saying I am sorry, feeling sorry for something I said. It beats down on me, yet I struggle constantly with changing my response patterns. I am getting a bit better, but one would have hoped that by age 60 I would have figured this out. It makes me feel like I have failed in life, to still struggle with such a basic thing after all these years.
I wish I could be a normal person, an ordinary person, a regular person. I know. There are no ordinary people. We live in a world full of people who are different, people who are not like one another, people who are unique. Still, I wouldn't mind being somewhat within the normal range. But I am not.
Perhaps the best thing I can say about myself is that I am unusual, different. I don't think like normal people. Sometimes I don't think at all. I am mostly unaware, or at least selectively aware of the feelings of others; I work hard to counteract this tendency, to make myself aware but it doesn't always work that way. My own emotions, my own feelings, often overwhelm any thoughts I have about the people around me. So I do things, react to situations, behave in ways that show limited concern, little caring for others. Then, sometimes in a few minutes, sometimes days later, I realize my stumble. By then the damage is done.
This is the way I am. I'm sorry. Please forgive my failures, my sins. I pray that God will.
I know I often speak before thinking, or at least I think I speak before thinking. It's interesting to watch others, people I know very well, to see them deliberate before they respond, to see them take time to formulate a response. These people do so much better in their relationships with others, yet it seems I am unable to develop this ability. I seemed destined to be the way I am, quick to respond, slow to think about the impact of my response.
All I can do at the end is say that I am sorry if I hurt you, sorry if my actions were inappropriate to the situation, sorry if my words were the wrong ones. I spend a lot of time saying I am sorry, feeling sorry for something I said. It beats down on me, yet I struggle constantly with changing my response patterns. I am getting a bit better, but one would have hoped that by age 60 I would have figured this out. It makes me feel like I have failed in life, to still struggle with such a basic thing after all these years.
I wish I could be a normal person, an ordinary person, a regular person. I know. There are no ordinary people. We live in a world full of people who are different, people who are not like one another, people who are unique. Still, I wouldn't mind being somewhat within the normal range. But I am not.
Perhaps the best thing I can say about myself is that I am unusual, different. I don't think like normal people. Sometimes I don't think at all. I am mostly unaware, or at least selectively aware of the feelings of others; I work hard to counteract this tendency, to make myself aware but it doesn't always work that way. My own emotions, my own feelings, often overwhelm any thoughts I have about the people around me. So I do things, react to situations, behave in ways that show limited concern, little caring for others. Then, sometimes in a few minutes, sometimes days later, I realize my stumble. By then the damage is done.
This is the way I am. I'm sorry. Please forgive my failures, my sins. I pray that God will.
Thursday, 4 February 2016
Armpit Wine
If you are afraid of creepy crawlies and weird things on your skin, then this is not the post for you. I'm going to talk about the human microbial system, the human microbiome. This is the incredible collection of creatures like mites, bacteria, fungi, and viruses that live on the human skin. These little critters live throughout our bodies; there are 20 times as many of these microscopic creatures in our bodies as there are cells in our body, rough 20 trillion of them in an average adult.
Your skin is the host to most of these teeny, tiny passengers; about half of them, roughly 10 trillion, live on the outside of your body. You can't see them, unless they get together in a gang and try to take over the neighbourhood. You can't feel them, except in your wild imaginings. And you need them. Without this microbial host, your body would quickly succumb to all kinds of illnesses and infections. By and large, these creatures are your friends, even if you have no choice in their existence.
One of the more common microbes on your skin is something called Candida albicans, more commonly known as yeast. This little fungus lives on you all the time, no matter how good you clean yourself, no matter how many showers you take, no matter what kind of soap you use. It's just there, like the mites that live in your hair follicles. It's a part of the human microbiome, whether you like it or not.
Sometimes, however, Candida albicans takes off. You get a yeast infection. This is so common in people that there are over the counter creams for taking care of it. In fact there are even TV commercials advertising these creams. This is ordinary stuff, most common in the folding areas of your skin. Women get them more than men, but men get them often enough. Yeast infections are most common in babies, overweight people, people with compromised immune systems, people who deal with constant wetness, plus a few others. I win on the immune system, overweight, wetness, and other stuff.
Yes, I have a persistent yeast infection in my armpits. There's no way around it. It has nothing to do with being unclean. In fact more showers might even make it worse, providing more wetness for the little friendly fungus to grow in. What I need is dryness, and a special under arm cream. It itches. It's red. It's a nuisance that points to other failures in my body, like becoming pre-diabetic thanks to being overweight, or the failure of my immune system in general.
It's not bad. It's just another annoying reminder that having ALS doesn't give me a free pass on other things. In fact it makes me a target for some of them. I just wish I could figure out a way to breed wine yeast on my skin. That way I could just grab some grapes, rub them in my armpits, and let it ferment. I suspect it might not taste all that good, but you never know.
Your skin is the host to most of these teeny, tiny passengers; about half of them, roughly 10 trillion, live on the outside of your body. You can't see them, unless they get together in a gang and try to take over the neighbourhood. You can't feel them, except in your wild imaginings. And you need them. Without this microbial host, your body would quickly succumb to all kinds of illnesses and infections. By and large, these creatures are your friends, even if you have no choice in their existence.
One of the more common microbes on your skin is something called Candida albicans, more commonly known as yeast. This little fungus lives on you all the time, no matter how good you clean yourself, no matter how many showers you take, no matter what kind of soap you use. It's just there, like the mites that live in your hair follicles. It's a part of the human microbiome, whether you like it or not.
Sometimes, however, Candida albicans takes off. You get a yeast infection. This is so common in people that there are over the counter creams for taking care of it. In fact there are even TV commercials advertising these creams. This is ordinary stuff, most common in the folding areas of your skin. Women get them more than men, but men get them often enough. Yeast infections are most common in babies, overweight people, people with compromised immune systems, people who deal with constant wetness, plus a few others. I win on the immune system, overweight, wetness, and other stuff.
Yes, I have a persistent yeast infection in my armpits. There's no way around it. It has nothing to do with being unclean. In fact more showers might even make it worse, providing more wetness for the little friendly fungus to grow in. What I need is dryness, and a special under arm cream. It itches. It's red. It's a nuisance that points to other failures in my body, like becoming pre-diabetic thanks to being overweight, or the failure of my immune system in general.
It's not bad. It's just another annoying reminder that having ALS doesn't give me a free pass on other things. In fact it makes me a target for some of them. I just wish I could figure out a way to breed wine yeast on my skin. That way I could just grab some grapes, rub them in my armpits, and let it ferment. I suspect it might not taste all that good, but you never know.
Wednesday, 3 February 2016
I'm Still Living With ALS
I'm back home, quickly settling into my normal routine. This morning my HCA was "The Shuffler" as she shall ever be known from this point on. I could also refer to her as the Minimalist, since she does the minimum possible to get past the work. She really is not into patient care all that much. There is food in my fridge, wine in the rack, coffee in the machine, and I am free to spend my day as I wish.
What I wish for most of all, is a return to routine for a couple of weeks. I need routine; it provides a series of safe cornerstones on which I can plant my life. It helps me remember the days of the week, the weeks of the month. Routine is predictable. That's what makes it safe for me. Unfortunately my routine also includes a lot of change, so even within that framework of stability, there is a lot that is unstable, changing in my life. That's why I need to cling all the more to those things which offer me a sense of safety, a feeling of still having life to live.
The last six months have been very difficult for me, moreso emotionally than physically. While I am certainly declining in strength and stamina, I'm not dead yet. Moreover, I'm quite lively, all things considered. However the emotional stuff is the hardest. It began with my UTI in August. Physically that set me back, but it seems to have had a powerful emotional impact.
Then it was the loss of my regular trivia group. The new location had stairs; I could not go. I miss them a lot. I moved to the Cat N Fiddle, and some of the regulars from my old group are there with me on a regular basis. I truly appreciate that. It's more the overall loss that gets to me, that the change in location meant I lost something important to me.
There were a number of smaller events which kind of got to me in the fall, none of which I will go into again. The big one, though, was reaching the three year mark, and reaching the end of my RRSP. All in all, I did pretty well in this. I was supposed to live about three years. My money lasted about three years. It seemed like a good plan. Then I lived longer. The psychological effect of losing the empowering capabilities of money has been difficult for me to get used to. I weighs on me.
Christmas was tough, not seeing my Mom and Ray, not seeing my children and grandchildren. I have second guessed my decision to stay here so many times it is countless. It's also pointless. The decision was made; the day is past. The whole Christmas and New Year's season was a rough ride. But I made it.
So here I am today, working hard to live in the moment, working hard to find new ways to stay social, stay active, stay alive. It takes a lot to live with ALS. But it's still better than dying from it.
What I wish for most of all, is a return to routine for a couple of weeks. I need routine; it provides a series of safe cornerstones on which I can plant my life. It helps me remember the days of the week, the weeks of the month. Routine is predictable. That's what makes it safe for me. Unfortunately my routine also includes a lot of change, so even within that framework of stability, there is a lot that is unstable, changing in my life. That's why I need to cling all the more to those things which offer me a sense of safety, a feeling of still having life to live.
The last six months have been very difficult for me, moreso emotionally than physically. While I am certainly declining in strength and stamina, I'm not dead yet. Moreover, I'm quite lively, all things considered. However the emotional stuff is the hardest. It began with my UTI in August. Physically that set me back, but it seems to have had a powerful emotional impact.
Then it was the loss of my regular trivia group. The new location had stairs; I could not go. I miss them a lot. I moved to the Cat N Fiddle, and some of the regulars from my old group are there with me on a regular basis. I truly appreciate that. It's more the overall loss that gets to me, that the change in location meant I lost something important to me.
There were a number of smaller events which kind of got to me in the fall, none of which I will go into again. The big one, though, was reaching the three year mark, and reaching the end of my RRSP. All in all, I did pretty well in this. I was supposed to live about three years. My money lasted about three years. It seemed like a good plan. Then I lived longer. The psychological effect of losing the empowering capabilities of money has been difficult for me to get used to. I weighs on me.
Christmas was tough, not seeing my Mom and Ray, not seeing my children and grandchildren. I have second guessed my decision to stay here so many times it is countless. It's also pointless. The decision was made; the day is past. The whole Christmas and New Year's season was a rough ride. But I made it.
So here I am today, working hard to live in the moment, working hard to find new ways to stay social, stay active, stay alive. It takes a lot to live with ALS. But it's still better than dying from it.
Tuesday, 2 February 2016
Lifeguards
I was going to write about the stupidity of the people at Park2Go at the Calgary Airport. I was going to tell how they assured me of wheelchair service yet completely failed at providing it. I was going to tell about how they left me and Katherine standing outside in the cold for a half an hour while not doing the pickup promised over the phone after we called right from the airport. I was going to rail about the statement from their supervisor that they had never helped someone with a wheelchair before, and would never do it again.
But I won't. They're not worth the effort.
Instead I want to tell the story of three young men, lifeguards on the beach at our resort in Cuba, the Blau Marina resort. The story begins with an understanding of beach access at the resort. There is a boardwalk down from the hotel to the sand. The sand, however, begins well before the beach area, through a cut in the dune that protects and separates the beach from the inshore area. What this meant is that I could get to the sand, but rolling through the sand to the beach was out of the question.
Given this difficulty, I spoke with the front desk. They shrugged and suggested their was little they could do. So I spoke to one of the real workers, one of the bell staff. He said "No problem. We'll get you to the beach." So we went to the end of the boardwalk, where he and a couple of other strong young men dragged me in my wheelchair down to the beach. This is when the beach staff noticed the situation, and jumped in to help.
The young men on the beach, the lifeguards, were terrific, learning quickly the best way to pull my wheelchair, leaning backwards, learning quickly the best way to lift me from my wheelchair to a beach chair, with three of them working as a team. All afternoon they were incredibly attentive; I barely had to finish a Pina Colada when they were asking if I wanted another. But it was more than "business as usual". I got the real and very sincere feeling that it actually mattered to them, that I, the man in the wheelchair, have the opportunity to enjoy their beach as much as possible.
The first day went so well that we went back for a second day on the beach. Instead of asking the bell staff, Katherine went straight to the boys on the beach. They seemed to come running from all directions to help. One of them was clearly off duty, but came anyway. They hauled me down, transferred me, got me drinks. When I wanted to go, they lifted me into my wheelchair and hauled me back to the boardwalk.
That's when the most interesting thing happened. I asked Katherine to give them a tip. She turned to give each of them a CUC peso, not an insubstantial tip but not gigantic either. Fair. The first took it. The second turned it down, as did the third. Then the first fellow, seeing what was happening, returned the tip to Katherine. We protested. They demurred. They smiled, shook my hand, and went back to the beach.
There is no moral here, no statement on the nature of humanity. I just thought of it as an incredibly kind and respectful gesture, to help someone in need with no expectation of return. We found this all over Cuba, but these three boys really demonstrated it. It wasn't big, but it sure impacted me.
But I won't. They're not worth the effort.
Instead I want to tell the story of three young men, lifeguards on the beach at our resort in Cuba, the Blau Marina resort. The story begins with an understanding of beach access at the resort. There is a boardwalk down from the hotel to the sand. The sand, however, begins well before the beach area, through a cut in the dune that protects and separates the beach from the inshore area. What this meant is that I could get to the sand, but rolling through the sand to the beach was out of the question.
Given this difficulty, I spoke with the front desk. They shrugged and suggested their was little they could do. So I spoke to one of the real workers, one of the bell staff. He said "No problem. We'll get you to the beach." So we went to the end of the boardwalk, where he and a couple of other strong young men dragged me in my wheelchair down to the beach. This is when the beach staff noticed the situation, and jumped in to help.
The young men on the beach, the lifeguards, were terrific, learning quickly the best way to pull my wheelchair, leaning backwards, learning quickly the best way to lift me from my wheelchair to a beach chair, with three of them working as a team. All afternoon they were incredibly attentive; I barely had to finish a Pina Colada when they were asking if I wanted another. But it was more than "business as usual". I got the real and very sincere feeling that it actually mattered to them, that I, the man in the wheelchair, have the opportunity to enjoy their beach as much as possible.
The first day went so well that we went back for a second day on the beach. Instead of asking the bell staff, Katherine went straight to the boys on the beach. They seemed to come running from all directions to help. One of them was clearly off duty, but came anyway. They hauled me down, transferred me, got me drinks. When I wanted to go, they lifted me into my wheelchair and hauled me back to the boardwalk.
That's when the most interesting thing happened. I asked Katherine to give them a tip. She turned to give each of them a CUC peso, not an insubstantial tip but not gigantic either. Fair. The first took it. The second turned it down, as did the third. Then the first fellow, seeing what was happening, returned the tip to Katherine. We protested. They demurred. They smiled, shook my hand, and went back to the beach.
There is no moral here, no statement on the nature of humanity. I just thought of it as an incredibly kind and respectful gesture, to help someone in need with no expectation of return. We found this all over Cuba, but these three boys really demonstrated it. It wasn't big, but it sure impacted me.
Monday, 1 February 2016
Parting Thoughts From Cuba
It's Cuba, where they will happily sell you a card to access the Internet, then have a non-functioning Internet for days at a time. I'm writing this post in the vain hope that I might, just maybe, get a working window with some sort of connectivity. On the other hand, I'm in Cuba. What do I have to complain about?
While I may be having a good time, Cuba presents some real challenges to me. By coming here, I am clearly supporting an oppressive regime, a security state. My hard currency is allowing the Cuban government to spend money on weapons and military. Yet at the same time there are a great many local people who benefit substantially from tourisim, not just through the meagre wages they earn from the government, but through the tips and through whatever gifts tourists like me might bring with them.
There are two schools of thought here in Cuba, as you might expect. There are those who want to leave this country, and there are those who want to stay and see it change, to work for change. I've had opportunities to talk with both; both points of view have their benefits. Those who want to leave are not willing to risk the dangers and time needed to build the Cuban economy. Those who want to stay would rather live with the devil they know rather than the devil they don't.
Overall the Cuban people seem happy enough. They are used to the frustrations and insanity of a government which promotes the raising of cattle for milk, so that every child can have milk, but then see no milk in the stores. They are used to rules which allow them to own a cow, but not to kill that cow. Meat can only be slaughtered with government permission, and then only for sale to the resorts. In Cuba, beef is for tourists. Pork is for the locals. Chicken is a rarity, but can be had either way.
Many of them are angry at what they call the "lies" of the government. Certainly the propaganda here is pervasive as the Castro's attempt to keep alive the myth of the revolution. Yet even in this "worker's paradise", there are those with the right connections, those within the ruling class, who have so much more than the average worker. Most of them are either cynical about it, dedicated to changing it, or desparate to leave it. I've found nobody yet who actually believes it.
As I leave, one thing strikes me clearly. Cuba is a country ready and waiting for change. You can smell it in the air. There are a great many people talking about what will happen over the next few years, as the embargo lifts, what will happen as the aging Castro brothers attempt to pass power to the next generation. Things will change, that's for sure. Just how is a bit of a crap shoot.
While I may be having a good time, Cuba presents some real challenges to me. By coming here, I am clearly supporting an oppressive regime, a security state. My hard currency is allowing the Cuban government to spend money on weapons and military. Yet at the same time there are a great many local people who benefit substantially from tourisim, not just through the meagre wages they earn from the government, but through the tips and through whatever gifts tourists like me might bring with them.
There are two schools of thought here in Cuba, as you might expect. There are those who want to leave this country, and there are those who want to stay and see it change, to work for change. I've had opportunities to talk with both; both points of view have their benefits. Those who want to leave are not willing to risk the dangers and time needed to build the Cuban economy. Those who want to stay would rather live with the devil they know rather than the devil they don't.
Overall the Cuban people seem happy enough. They are used to the frustrations and insanity of a government which promotes the raising of cattle for milk, so that every child can have milk, but then see no milk in the stores. They are used to rules which allow them to own a cow, but not to kill that cow. Meat can only be slaughtered with government permission, and then only for sale to the resorts. In Cuba, beef is for tourists. Pork is for the locals. Chicken is a rarity, but can be had either way.
Many of them are angry at what they call the "lies" of the government. Certainly the propaganda here is pervasive as the Castro's attempt to keep alive the myth of the revolution. Yet even in this "worker's paradise", there are those with the right connections, those within the ruling class, who have so much more than the average worker. Most of them are either cynical about it, dedicated to changing it, or desparate to leave it. I've found nobody yet who actually believes it.
As I leave, one thing strikes me clearly. Cuba is a country ready and waiting for change. You can smell it in the air. There are a great many people talking about what will happen over the next few years, as the embargo lifts, what will happen as the aging Castro brothers attempt to pass power to the next generation. Things will change, that's for sure. Just how is a bit of a crap shoot.
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