I'm sitting in my Ikea Phoang chair, writing my blog post. It's been a long time since I have done this, perhaps years. When I was first diagnose, when I could still get in and out of this chair on my own, I would settle here and write. Then, as transfers became more difficult and arms weakened, I rather gave up on it, deciding it was easier to sit at the table, to write on it's firm, steady surface.
Sitting here, in this chair, in this place, has always been one of the best parts of my day. From here the sky stretches to the prairie, today showing thin patches of blue smudge against thin patches of white; the wind restless, shifting from gust to still and back again; the air full and thick, humid, heavy. It's the breeze that makes the day today, the offer of cool air stripping away the clammy clutch of moisture. I can feel it, even here in my chair, courtesy of my open balcony door.
The hanging baskets and my tree make a dance of it, swaying with each gust. The small birds huddle into the tree, flitting in and out, living on the wind as an old friend and trusted ally. Every once in a while a crow or magpie will land on a branch, stare in my window, see nothing of interest, then bolt off for the next port of call. And always there is the noise of people and traffic below.
I'm tired today, unsure if I will get up out of this chair at any point, unsure if I will wander past my computer and my book today. I have water next to me, along with the ubiquitous jug. Of course the jug works poorly in this chair; I am no expert at peeing uphill into a container which points back downwards at me. Nor am I wearing a catheter, although the catheter would be a nuisance too, equally plagued by the vicissitudes of gravitation and slope. Bag below bladder, that's the rule. It makes it tough to sit with your feet up.
So, I suppose, at some point I will leave the comfort of this chair, once again engaging in the life of a man with ALS, a man in a wheelchair, a man tired of challenge. But not just yet. For a while, just a little while, I am going to watch the wind in the trees, listen to the chirps and squirps of the small birds, feel the air push past me. Just for a while.
Wednesday, 31 May 2017
Tuesday, 30 May 2017
Getting Worn Down, Over A Rib Roast
I have this nice little 2 pound rib roast I just took out of the freezer. I look at the price of it; $16.38. I think to myself how expensive that is for such a small bit of meat. Then I realize that I will barely be able to eat half of it, especially given how I am about the combination of cooking, followed by eating. It's entirely possible I will cook it, then eat none of it at all. That's the way it goes these days.
How I cook it will have some impact, not much, but a little. If I simply grill it, like a gigantic, thick steak, it won't be as much work. So perhaps I will eat a bit. If I oven roast it, with spices and all, and then make some gravy, I doubt I will each much, if any of it. I'll be too tired from the work. I could even do it on the BBQ, but again the work of it all will destroy my appetite.
Wine will help. It stimulates my appetite. But after a glass or two of wine, I'll just want to have more wine, and eat foods that require no preparation and little or no cutlery. I would likely chow down on my giant bowl of coleslaw rather than eat the steak. I might have a mouthful or two, maybe not. Plus there is the effort of cleaning up the BBQ, both before and after cooking.
Then there is the question of mushrooms. I love mushrooms, especially with a good cut of meat. This roast is one of the nicest cuts of meat going. I think Rib Roast is as good as it gets when it comes to beef. I am purely a carnivore on this front. Yet mushrooms make it so much better. So now I have to ask if I have the energy to go across the street, today or tomorrow, to get some fresh mushrooms. Will I feel like sauteing them? Will I want to clean and slice them? Is any of this worth the effort?
So the real questions are these. Who will come and help me cook? Who will eat with me? Who will bring mushrooms and help prepare them? Who will make the effort worthwhile. You see, I don't want to do any of this if I am left up to myself. It's too much work. Even now I'm thinking I should just put that Rib Roast back in the freezer and give up. The coleslaw will be enough, just like it will be tonight.
All of this, over a simple meal. It's the emotional side of ALS that really wears me down.
How I cook it will have some impact, not much, but a little. If I simply grill it, like a gigantic, thick steak, it won't be as much work. So perhaps I will eat a bit. If I oven roast it, with spices and all, and then make some gravy, I doubt I will each much, if any of it. I'll be too tired from the work. I could even do it on the BBQ, but again the work of it all will destroy my appetite.
Wine will help. It stimulates my appetite. But after a glass or two of wine, I'll just want to have more wine, and eat foods that require no preparation and little or no cutlery. I would likely chow down on my giant bowl of coleslaw rather than eat the steak. I might have a mouthful or two, maybe not. Plus there is the effort of cleaning up the BBQ, both before and after cooking.
Then there is the question of mushrooms. I love mushrooms, especially with a good cut of meat. This roast is one of the nicest cuts of meat going. I think Rib Roast is as good as it gets when it comes to beef. I am purely a carnivore on this front. Yet mushrooms make it so much better. So now I have to ask if I have the energy to go across the street, today or tomorrow, to get some fresh mushrooms. Will I feel like sauteing them? Will I want to clean and slice them? Is any of this worth the effort?
So the real questions are these. Who will come and help me cook? Who will eat with me? Who will bring mushrooms and help prepare them? Who will make the effort worthwhile. You see, I don't want to do any of this if I am left up to myself. It's too much work. Even now I'm thinking I should just put that Rib Roast back in the freezer and give up. The coleslaw will be enough, just like it will be tonight.
All of this, over a simple meal. It's the emotional side of ALS that really wears me down.
Monday, 29 May 2017
What Happens When?
I went shopping yesterday. I wanted some fruit, and another carton of milk. I also wanted to go up to Canadian Tire, ostensibly to purchase a watering can, but really just because I like going to Canadian Tire. Fortunately I didn't buy a watering can; I don't really need one. Nor did I buy any of the other fun stuff I was looking at.
My purchasing problems began at Safeway, not in terms of expenditure but in terms of ability. I discovered yesterday that I can no long pick up a mini-watermelon, nor can I lift up my shopping bag with a watermelon and cantaloupe in it. Even the 2 litre carton of milk is getting heavier for me these days. Perhaps becoming poor again in a few months will help with the situation; I'll no longer have the money for expensive fruits and vegetables. Instead, I will be on the path to becoming the vegetable.
Losing the strength in my arms is leading me to other concerns. For example, never mind not being able to pick up a glass of beer, what happens when I can't pick up my urine jug? At that point I will have to be permanently catheterised. I get a lot of help getting myself dressed these days. What will happen when I cannot get undressed by myself? It will mean having home care come in and put me to bed at night, another loss of independence and lifestyle. I won't be able to stay up late, bingeing on Netflix and wine. Perhaps this is a good thing, perhaps not.
Even my coffee cup is feeling heavy these days, tugging at my arm muscles as I pick it up for a sip between paragraphs or sentences. I can feel the pain of overwork in my upper arms, both left and right. I can no longer pick up my toolbox without some sort of help and it is almost impossible for me to put my drill kit up into the cupboard. Someone has to do these things for me now.
Losing my legs was easy compared to losing my arms. Losing my legs meant going into a wheelchair, changing my way of getting around, giving up some of my leisure activities. Losing my arm strength means giving up everything. There is no replacement, no wheelchair for the arms. This disease is getting very real right now, very potent in its impact. I suspect that my daughter is correct; once my arms are gone, I will go very quickly after that.
My purchasing problems began at Safeway, not in terms of expenditure but in terms of ability. I discovered yesterday that I can no long pick up a mini-watermelon, nor can I lift up my shopping bag with a watermelon and cantaloupe in it. Even the 2 litre carton of milk is getting heavier for me these days. Perhaps becoming poor again in a few months will help with the situation; I'll no longer have the money for expensive fruits and vegetables. Instead, I will be on the path to becoming the vegetable.
Losing the strength in my arms is leading me to other concerns. For example, never mind not being able to pick up a glass of beer, what happens when I can't pick up my urine jug? At that point I will have to be permanently catheterised. I get a lot of help getting myself dressed these days. What will happen when I cannot get undressed by myself? It will mean having home care come in and put me to bed at night, another loss of independence and lifestyle. I won't be able to stay up late, bingeing on Netflix and wine. Perhaps this is a good thing, perhaps not.
Even my coffee cup is feeling heavy these days, tugging at my arm muscles as I pick it up for a sip between paragraphs or sentences. I can feel the pain of overwork in my upper arms, both left and right. I can no longer pick up my toolbox without some sort of help and it is almost impossible for me to put my drill kit up into the cupboard. Someone has to do these things for me now.
Losing my legs was easy compared to losing my arms. Losing my legs meant going into a wheelchair, changing my way of getting around, giving up some of my leisure activities. Losing my arm strength means giving up everything. There is no replacement, no wheelchair for the arms. This disease is getting very real right now, very potent in its impact. I suspect that my daughter is correct; once my arms are gone, I will go very quickly after that.
Sunday, 28 May 2017
Crappy Parker
Last night I went out to a social event. I am no longer able to go solo in my truck, so I went in my power wheelchair, taking public transit to my destination, or as close as it would get me, then powering my way along the sidewalk to rest of the way. Alas, it was not a simple thing. Then again, with ALS, very little is simple. As I have said before; nothing is easy, nothing is fast.
The first part was relatively easy, after going the the process of preparing for a night out, putting on a catheter, putting on shoes, getting my coat on and getting out the door. I just powered my way over to a nearby C-Train station, the Brentwood station, about 15 minutes by power chair. I didn't bother with the bus; the weather was lovely and the fresh air was worth the extra few minutes.
I rolled onto the train almost as soon as I got to the station. It just worked that way. The train itself takes about 40 minutes. Then there is about a 15 minute walk, or 10 minute roll, along the sidewalks to get to the pub where we were all meeting. Unfortunately, about half way along the way, there was a car parked right in front of the sidewalk access ramp where I needed to cross the street. No access. None. Totally blocked.
I turned around and went to the patio of a nearby restaurant where it looked like there might be a candidate, and shouted out, asking if anyone owned the car blocking the wheelchair access ramp to the sidewalk. No luck with the owner, but whom should I see there? Mickey Hays, one of my co-workers when I was at the CBE! He, along with a couple of other guys, came and helped me muscle my power wheelchair up the curb, onto the grass, and then onto the sidewalk on the other side of that badly parked car.
Mickey and I said our hellos. I expressed my gratitude, and was on my way. I had a great time at the pub, enjoying good company, celebrating the 40th anniversary of the release of Star Wars. Next thing I know, it's 10:00 PM and I am exhausted. So, after bidding my leave of all, I powered out once again, into the night, onto the sidewalk, only to encounter, once again, that accursed car, still blocking the access ramp two hours later.
I had had enough. I called the cops. 911 and all. While this may not have been an emergency, it was certainly important, perhaps even urgent. The only way for me to get around the car was to take my power wheelchair into the middle of a busy street, going off the sidewalk and into potential harm's way in traffic. I didn't want to do that. The 911 operator agreed wholeheartedly. However I did opt to go around the block the long way on a back road where there was less traffic, just to get past the obstacle.
An officer arrived within minutes, about as long as it took me to get around the block. As he got out of his truck, I apologized for being a nuisance. It was just too much for me, I said. He replied "No. This is exactly what you need to do. I understand completely. That's why I came so quickly. This is just wrong."
I teared up. I'm still tearing up a bit as I write about it. To have my feelings of frustration so validated, to have someone able bodied see the challenge from my perspective, to have him able to do something about it, that meant so much to me. It's tough enough being in the chair, but when idiots thoughtlessly block the way with no regard for anyone but themselves, that's plainly wrong.
I'm not sure what happened to the car. I'm pretty sure the officer planted a very expensive ticket on it. I'm also reasonably certain he called a tow truck to unblock the sidewalk access. I feel no shame in all of this; quite the reverse. I feel vindicated. I know I did the right thing. I don't feel badly for the driver, not even one little bit. He or she is just lucky they didn't show up while I was around. Then the officer might have had to restrain me. I'm sure none of us needed that.
The first part was relatively easy, after going the the process of preparing for a night out, putting on a catheter, putting on shoes, getting my coat on and getting out the door. I just powered my way over to a nearby C-Train station, the Brentwood station, about 15 minutes by power chair. I didn't bother with the bus; the weather was lovely and the fresh air was worth the extra few minutes.
I rolled onto the train almost as soon as I got to the station. It just worked that way. The train itself takes about 40 minutes. Then there is about a 15 minute walk, or 10 minute roll, along the sidewalks to get to the pub where we were all meeting. Unfortunately, about half way along the way, there was a car parked right in front of the sidewalk access ramp where I needed to cross the street. No access. None. Totally blocked.
I turned around and went to the patio of a nearby restaurant where it looked like there might be a candidate, and shouted out, asking if anyone owned the car blocking the wheelchair access ramp to the sidewalk. No luck with the owner, but whom should I see there? Mickey Hays, one of my co-workers when I was at the CBE! He, along with a couple of other guys, came and helped me muscle my power wheelchair up the curb, onto the grass, and then onto the sidewalk on the other side of that badly parked car.
Mickey and I said our hellos. I expressed my gratitude, and was on my way. I had a great time at the pub, enjoying good company, celebrating the 40th anniversary of the release of Star Wars. Next thing I know, it's 10:00 PM and I am exhausted. So, after bidding my leave of all, I powered out once again, into the night, onto the sidewalk, only to encounter, once again, that accursed car, still blocking the access ramp two hours later.
I had had enough. I called the cops. 911 and all. While this may not have been an emergency, it was certainly important, perhaps even urgent. The only way for me to get around the car was to take my power wheelchair into the middle of a busy street, going off the sidewalk and into potential harm's way in traffic. I didn't want to do that. The 911 operator agreed wholeheartedly. However I did opt to go around the block the long way on a back road where there was less traffic, just to get past the obstacle.
An officer arrived within minutes, about as long as it took me to get around the block. As he got out of his truck, I apologized for being a nuisance. It was just too much for me, I said. He replied "No. This is exactly what you need to do. I understand completely. That's why I came so quickly. This is just wrong."
I teared up. I'm still tearing up a bit as I write about it. To have my feelings of frustration so validated, to have someone able bodied see the challenge from my perspective, to have him able to do something about it, that meant so much to me. It's tough enough being in the chair, but when idiots thoughtlessly block the way with no regard for anyone but themselves, that's plainly wrong.
I'm not sure what happened to the car. I'm pretty sure the officer planted a very expensive ticket on it. I'm also reasonably certain he called a tow truck to unblock the sidewalk access. I feel no shame in all of this; quite the reverse. I feel vindicated. I know I did the right thing. I don't feel badly for the driver, not even one little bit. He or she is just lucky they didn't show up while I was around. Then the officer might have had to restrain me. I'm sure none of us needed that.
Saturday, 27 May 2017
This Gardening Thing
I have a garden on my balcony! It's not quite done yet; the last couple of planters need to be filled in and put in place. Andrea and Dan are coming over this afternoon to help with that. I am so excited to see them in place that I don't know if I can wait until 3:00 PM for them to show up. I might just sit out there and enjoy what is done already, perhaps with a Gin and Tonic.
Gardening is not, nor never really has been, a thing for me. I've always enjoyed the idea conceptually, planting a seed, watching it grow, enjoying the harvest. It's just that the whole dirt and flowers and weeds and watering stuff never really held much pleasure for me. It just seemed like a lot of work. Yes, gardens look lovely, and I truly appreciated the work my ex-wife did with flowers and plants. She was the natural gardener in our house. I was the heavy lifting kind of helper.
Something happened last year. I got a hanging basket or two, really enjoying the flowers and sunshine while sitting on my balcony. This year I decided to go to town with the project. There are now four box planters on my balcony railing, two complete and two for completion today. There are also two hanging baskets with a variety of flowers, hung low from the ceiling on chain so they are easy to see. There is a third one which I don't quite know what to do with. I'll decide that today. Finally, there is a pepper plant, complete with a pepper, and a beefsteak tomato plant, both set into the end of the balcony against a climbing trellis.
If I am still alive next year, and capable of doing or directing the work, I'm already thinking of doing something different, perhaps a potted clematis for that trellis, and maybe cherry tomatoes in one of the rail planters. It has gotten me, this gardening thing. I kind of like it.
Gardening is not, nor never really has been, a thing for me. I've always enjoyed the idea conceptually, planting a seed, watching it grow, enjoying the harvest. It's just that the whole dirt and flowers and weeds and watering stuff never really held much pleasure for me. It just seemed like a lot of work. Yes, gardens look lovely, and I truly appreciated the work my ex-wife did with flowers and plants. She was the natural gardener in our house. I was the heavy lifting kind of helper.
Something happened last year. I got a hanging basket or two, really enjoying the flowers and sunshine while sitting on my balcony. This year I decided to go to town with the project. There are now four box planters on my balcony railing, two complete and two for completion today. There are also two hanging baskets with a variety of flowers, hung low from the ceiling on chain so they are easy to see. There is a third one which I don't quite know what to do with. I'll decide that today. Finally, there is a pepper plant, complete with a pepper, and a beefsteak tomato plant, both set into the end of the balcony against a climbing trellis.
If I am still alive next year, and capable of doing or directing the work, I'm already thinking of doing something different, perhaps a potted clematis for that trellis, and maybe cherry tomatoes in one of the rail planters. It has gotten me, this gardening thing. I kind of like it.
Friday, 26 May 2017
Too Tired
I'm tired, too tired to write. I'l see how I feel later in the day.
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It's later in the day. I'm still fairly much exhausted, even though I slept will last night. I think it might be a hangover from the Zopiclone. This would be my second night in a row where I have taken one and a half tablets. Sure, it knocks me out, but it continues to have an affect even this afternoon.
I'm kind of emotionally tired and upset as well. I sent out an invitation to my "gang" asking if anyone wanted to come help me with planting up my planters, and then staying for a BBQ. I got no answers. Nobody wanted to come. It was bound to happen sooner or later. After all, it's summer. People have gardens of their own, plans for their weekends. I am the only one with nothing but free time on my hands.
Oh well, onward and upward. At least I can putter away on these things on my own. Instead of a BBQ, I am going to go out to a 40th Anniversary Star Wars party with some other friends at a local pub.
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It's later in the day. I'm still fairly much exhausted, even though I slept will last night. I think it might be a hangover from the Zopiclone. This would be my second night in a row where I have taken one and a half tablets. Sure, it knocks me out, but it continues to have an affect even this afternoon.
I'm kind of emotionally tired and upset as well. I sent out an invitation to my "gang" asking if anyone wanted to come help me with planting up my planters, and then staying for a BBQ. I got no answers. Nobody wanted to come. It was bound to happen sooner or later. After all, it's summer. People have gardens of their own, plans for their weekends. I am the only one with nothing but free time on my hands.
Oh well, onward and upward. At least I can putter away on these things on my own. Instead of a BBQ, I am going to go out to a 40th Anniversary Star Wars party with some other friends at a local pub.
Thursday, 25 May 2017
No Breakfast Today
On Tuesday, Wednesday, Thursday, and Friday, my HCA, Micheal arrives at 9:00, in theory. In practice, he usually gets here about 10 to 15 minutes early, so I wake up at 8:45 or so. Saturday through Monday start at 10:30 AM. I made this schedule change in the forlorn hope that I might get more useful stuff done in the earlier parts of my day. The truth is that these are the days where I tend to have a long nap in the afternoon.
These are also the days with Micheal. He is a reasonable care aide, his biggest asset being his reliability. While the nature of the job means there will be so irregularity in his arrival and departure, he is almost always here when he says he will be here, and when he is late I know something serious has happened.
Micheal has his limitations. Part of his job is to make me breakfast. If I am lucky, I get a fried egg sandwich once out of the five days he is with me. More often I get myself a bowl of cereal or some fresh fruit, perhaps both. Today I got nothing; I have to fend for myself. He simply doesn't cook. He says I am like a woman because I cook, and I prefer to have my laundry folded and put away, rather than just dumped into a drawer or left in the basket. I will be discussing this with his supervisor in the next few days.
His other challenge is initiative in being helpful. He will do exactly what it says on his list of things to do. No more. Today I had plants in the sink from watering them last night. He calls to me and asks me to take the plants out of the sink. I asked him about help with watering and he said "No. I am not a horticulturalist." Given that he is here five days out of seven, this could be a problem.
Today I am going to meet with my Home Care Coordinator Nurse, Dani. I am going to talk to her about help with my laundry and help with watering my flowers. I am also going to discuss getting a therapy pet, one to keep me company and perhaps help pick things up when I drop them, or do light switches when I forget. My thought is to have a doggy pad on the deck. I wonder how Micheal will respond if and when theses things are added to his duties. I suspect he will do them, reluctantly, just like making breakfast for me.
These are also the days with Micheal. He is a reasonable care aide, his biggest asset being his reliability. While the nature of the job means there will be so irregularity in his arrival and departure, he is almost always here when he says he will be here, and when he is late I know something serious has happened.
Micheal has his limitations. Part of his job is to make me breakfast. If I am lucky, I get a fried egg sandwich once out of the five days he is with me. More often I get myself a bowl of cereal or some fresh fruit, perhaps both. Today I got nothing; I have to fend for myself. He simply doesn't cook. He says I am like a woman because I cook, and I prefer to have my laundry folded and put away, rather than just dumped into a drawer or left in the basket. I will be discussing this with his supervisor in the next few days.
His other challenge is initiative in being helpful. He will do exactly what it says on his list of things to do. No more. Today I had plants in the sink from watering them last night. He calls to me and asks me to take the plants out of the sink. I asked him about help with watering and he said "No. I am not a horticulturalist." Given that he is here five days out of seven, this could be a problem.
Today I am going to meet with my Home Care Coordinator Nurse, Dani. I am going to talk to her about help with my laundry and help with watering my flowers. I am also going to discuss getting a therapy pet, one to keep me company and perhaps help pick things up when I drop them, or do light switches when I forget. My thought is to have a doggy pad on the deck. I wonder how Micheal will respond if and when theses things are added to his duties. I suspect he will do them, reluctantly, just like making breakfast for me.
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