I'm going across the street to the mall today, using my power wheelchair. That may not seem like much of an adventure, until you realize that the city of Calgary is in the midst of a cold snap. Only it's not so snappy. The icy freeze of the cold north rolled down onto our fair city on Sunday, with temperatures plummeting from +10C to -25C in just a couple of days. Unfortunately this weather front has settled upon us; it looks like it will be here for a week or two.
Right now the temperature outside is -19C. That's -2F, for those of you living in the only major nation in the world still using Fahrenheit, or one of the three other minor nations. The -19 Celcius isn't so bad until you factor in the wind chill. We are having a breezy few days this week, with the wind steadily at 9 km/h. That wind chill cools open skin even more, making the cold feel like its more along the lines of -28C.
It's cold. It's bloody cold. It's freezing cold. It's cold enough to make crossing the street in my power wheelchair a chilling, thrilling experience. Yet go I must. I have medications to pick up and letters to mail. Fortunately for me the biggest part will be getting across the street and parking lot. Market Mall has heating, and all the stores I want have entrances into the mall. All I have to do is make it to the closest entrance.
My biggest concern is the power wheelchair itself. I have never before taken it out into such cold temperatures. I don't know how the battery will be affected by the cold, nor how the operational gears will run in such cold temperatures. I don't want to get halfway there and have the thing freeze up. I could take my truck and park downstairs at the mall but that would mean having someone go with me, in which case I would just ask them to go instead of me.
I really don't want to go outside today.
Wednesday, 7 December 2016
Tuesday, 6 December 2016
Another Commode Chair
I've somehow managed to break yet another commode chair, in the same way as I broke the previous one. The bearing has slipped out of its pressure fit seat, leaving the axle free to extend and the wheel free to fall off. It did so while I was in the shower yesterday, or rather almost in the shower. As the wheelchair wheel slid off, the commode chair rested on the smaller inner wheels, so disaster did not befall me. The stress of the incident, however, convinced me that a shower was not necessary just right then.
The ALS Society of Alberta, in the person of Rob Lognon, my Client Coordinator, is delivering another commode chair to me today. This will be the third chair from the Society, or perhaps more likely the third wheel. The parts on these chairs are interchangeable. With the new wheel on the chair, I can retain the same chair, already adjusted to fit over my toilet seat such that my bidet spray works. This is important to me.
A fair bit of the equipment which makes my life functional comes from the ALS Society. My slings, the lift in my living room, my power chair, even the grabby stick I got on Saturday to replace the one I broke getting my cordless drill kit out of the cupboard last week. The ALS Society has provided me with temporary equipment, such as the hospital table I needed when I was ill last year, and longer term equipment such as the shower bench. Both of these items have been returned, there in the inventory for other PALS to use.
That's the great thing about the ALS Society. We all know I won't need this equipment for long, perhaps a couple or three years at best. We all know that others will come along who need it. This equipment is expensive. It consistently outlives the PALS using it. With the Society it gets handed along, sharing the expense amongst multiple recipients, saving me in the money from buying it, allowing me to spend more on meaningful things like food and wine.
My biggest concern these days is the financial viability of the ALS Society of Alberta. As with all these kinds of organizations, it runs on the knife's edge when it comes to money. You might the the Ice Bucket money was there, but all that money went directly into the research pool. Virtually none of it stay with the Society for local operations. So they are left with fundraising in a poor economy. It's a tough situation, yet still they provide me with equipment, advice, information, and, most importantly, hope. Hope for a cure, hope for a treatment, hope for quality of life.
The ALS Society of Alberta, in the person of Rob Lognon, my Client Coordinator, is delivering another commode chair to me today. This will be the third chair from the Society, or perhaps more likely the third wheel. The parts on these chairs are interchangeable. With the new wheel on the chair, I can retain the same chair, already adjusted to fit over my toilet seat such that my bidet spray works. This is important to me.
A fair bit of the equipment which makes my life functional comes from the ALS Society. My slings, the lift in my living room, my power chair, even the grabby stick I got on Saturday to replace the one I broke getting my cordless drill kit out of the cupboard last week. The ALS Society has provided me with temporary equipment, such as the hospital table I needed when I was ill last year, and longer term equipment such as the shower bench. Both of these items have been returned, there in the inventory for other PALS to use.
That's the great thing about the ALS Society. We all know I won't need this equipment for long, perhaps a couple or three years at best. We all know that others will come along who need it. This equipment is expensive. It consistently outlives the PALS using it. With the Society it gets handed along, sharing the expense amongst multiple recipients, saving me in the money from buying it, allowing me to spend more on meaningful things like food and wine.
My biggest concern these days is the financial viability of the ALS Society of Alberta. As with all these kinds of organizations, it runs on the knife's edge when it comes to money. You might the the Ice Bucket money was there, but all that money went directly into the research pool. Virtually none of it stay with the Society for local operations. So they are left with fundraising in a poor economy. It's a tough situation, yet still they provide me with equipment, advice, information, and, most importantly, hope. Hope for a cure, hope for a treatment, hope for quality of life.
Monday, 5 December 2016
No More Baby Powder
I'm tired. I just got up and already I am thinking I might go back to bed. Well, I didn't "just" get up. I got up a couple of hours ago, went to the bathroom, tried to have a shower, then did exercises, getting lessons on how to properly attach this stupid catheter. I did learn something important in the process, how to reduce the chances of disattachment such as happened on Saturday evening.
But first, that whole thing about trying to have a shower. I have a brand new commode chair. It would appear that the bolts holding the axle sleeve in place are a bit loose. This means the axle itself does not lock into place. This morning, while wheeling about to get into the shower, the right wheel, the one with the loose bolts, detached completely. Fortunately this new commode chair has small wheels on it as well so it can convert from self-propelled to a push chair. When the big wheel fell off, the small wheel was there to stop a calamity.
Nonetheless, I forwent the shower and opted for a hand wash of critical areas. During this process I discussed the condom catheter with my HCA. Kathy is an experienced woman, about my age, and has been doing Home Care for a decade or so. She's seen it all. As she washed and dried me, she talked about the way they were supposed to stick and options for making it stick on better. Then, as she went to apply creams, she skipped Baby Powder, telling me it would interfere with the glue that holds on the condom part.
That was my mistake on Saturday. After a thorough cleaning, I put Baby Powder on myself. It helps reduce the dampness and potential chafing. However that powder interfered with the glue, allowing my catheter to come loose right in the midst of dinner with David. Catheters don't come loose when they are idle; the explode off under pressure, as did mine. I uttered an expletive. David looked at the look on my face and laughed. He was amused. I was not amused.
Kathy stepped me through the proper method of attachment. She pointed out a couple of pitfalls and assured me I had the right size. She also explained that the green collar on the device was for protecting it before application, and could be disposed of. I did not need to wear that collar anyplace at all. She also suggested getting a blow dryer for my groin as a way of ensuring no moisture got into the glue that holds things in place.
So no more Baby Powder for me. I guess the expectation is that I will be dry anyways. And now I need to look for a blow dryer, but not one for my hair. Today I put on another of these monsters. Let's see how it goes.
But first, that whole thing about trying to have a shower. I have a brand new commode chair. It would appear that the bolts holding the axle sleeve in place are a bit loose. This means the axle itself does not lock into place. This morning, while wheeling about to get into the shower, the right wheel, the one with the loose bolts, detached completely. Fortunately this new commode chair has small wheels on it as well so it can convert from self-propelled to a push chair. When the big wheel fell off, the small wheel was there to stop a calamity.
Nonetheless, I forwent the shower and opted for a hand wash of critical areas. During this process I discussed the condom catheter with my HCA. Kathy is an experienced woman, about my age, and has been doing Home Care for a decade or so. She's seen it all. As she washed and dried me, she talked about the way they were supposed to stick and options for making it stick on better. Then, as she went to apply creams, she skipped Baby Powder, telling me it would interfere with the glue that holds on the condom part.
That was my mistake on Saturday. After a thorough cleaning, I put Baby Powder on myself. It helps reduce the dampness and potential chafing. However that powder interfered with the glue, allowing my catheter to come loose right in the midst of dinner with David. Catheters don't come loose when they are idle; the explode off under pressure, as did mine. I uttered an expletive. David looked at the look on my face and laughed. He was amused. I was not amused.
Kathy stepped me through the proper method of attachment. She pointed out a couple of pitfalls and assured me I had the right size. She also explained that the green collar on the device was for protecting it before application, and could be disposed of. I did not need to wear that collar anyplace at all. She also suggested getting a blow dryer for my groin as a way of ensuring no moisture got into the glue that holds things in place.
So no more Baby Powder for me. I guess the expectation is that I will be dry anyways. And now I need to look for a blow dryer, but not one for my hair. Today I put on another of these monsters. Let's see how it goes.
Sunday, 4 December 2016
I Fell Off My Bed
I fell off my bed this morning. This was no soft slide sideways. This was a full on, force forward, body weight pitch to the front. Fortunately, thanks to an unusual conflation of circumstances, my manual wheelchair was in just the perfect position to block my fall, my head bouncing onto the armrest and my arms grabbing the wheel, luckily locked at the time, to hold myself into a seated jackknife position. Once steady, I slowly worked myself back into a vertical position with only a slight headache for a moment, and a pull on the soft tissue injury in my left shoulder, the one that just doesn't want to get better after the hotel tumble. One thing leads to another.
The reason for the fall is simple; Christmas. In order to get ready for Christmas decorations, I have moved my power wheelchair into my bedroom. It will come out once Christmas decorating is complete. Dion is coming over today to help with my Christmas lights. My hope is that Kate will come today and help me decorate my tree. Once that is done, the power wheelchair can go back into the living room.
With the power wheelchair in the bedroom, there is less room for my manual chair and my commode chair when I get up in the mornings. So what I have taken to doing is putting the manual chair beside my power chair, parked like cars in a lot, nose in towards my dresser. Then I can bring my commode chair close enough to transfer for morning needs. That is what I did this morning.
I got the commode chair, put the transfer board in place, then, using my left arm as a brace against the M-rail, I started to slide down the transfer board. Then my left arm buckled completely. My legs used to do that. Put under strain they would buckle. Now it's my arms. When my arm buckled, my hand came free of the M-rail. My head, hitting the armrest on my manual chair, gave me just enough pause for both hands to grab the manual wheelchair wheel. Fall arrested.
Now all I have to show for this effort is more soreness in my left shoulder. And a continuing mistrust of my own body. That's living with ALS.
The reason for the fall is simple; Christmas. In order to get ready for Christmas decorations, I have moved my power wheelchair into my bedroom. It will come out once Christmas decorating is complete. Dion is coming over today to help with my Christmas lights. My hope is that Kate will come today and help me decorate my tree. Once that is done, the power wheelchair can go back into the living room.
With the power wheelchair in the bedroom, there is less room for my manual chair and my commode chair when I get up in the mornings. So what I have taken to doing is putting the manual chair beside my power chair, parked like cars in a lot, nose in towards my dresser. Then I can bring my commode chair close enough to transfer for morning needs. That is what I did this morning.
I got the commode chair, put the transfer board in place, then, using my left arm as a brace against the M-rail, I started to slide down the transfer board. Then my left arm buckled completely. My legs used to do that. Put under strain they would buckle. Now it's my arms. When my arm buckled, my hand came free of the M-rail. My head, hitting the armrest on my manual chair, gave me just enough pause for both hands to grab the manual wheelchair wheel. Fall arrested.
Now all I have to show for this effort is more soreness in my left shoulder. And a continuing mistrust of my own body. That's living with ALS.
Saturday, 3 December 2016
The Condom Conundrum
I've got a new excuse for tardiness in my life. "Sorry for being late. I had some trouble with my catheter." I tried it out for the first time yesterday, attaching it and setting it up with little difficulty. It works just fine. Of course it would work for me just fine; it's worked for millions of men before me. The manufacturer has had a long test cycle.
This morning, however, did not go so well.
To attach this piece of personal low technology to my body takes a bit of effort. First of all, there is the attachment of the condom catheter itself. As the name suggests, it fits over the penis like a condom. However the beast under attack is not all that cooperative. To use the medical term, it is flaccid. Like a child on the mall floor not wanting to cooperate, it simply plays the "I'll go limp" game and disrupts by default.
The design of the condom catheter is excellent, with a long, loose capture sleeve at the end of the portion which you must wrestle down a loose and floppy target. At first contact, the target retreats inwards, seeking the shelter of its natural resting place. So you kind of have to pull it out, long and skinny, and place the cap over your cap. Then you have to roll the condom portion down while attempt to retain some form of a grip over your pocket snake.
If you want to understand how this might be difficult, go try putting a regular condom over an non-erect penis. Sometimes it works perfectly. Other times it is a challenge. That is all I have to say about that.
The next step is attaching the tubing, a fairly simple process. The equipment is designed with the appropriate attachment ports and comes with the appropriate tubing. Once again the manufacturer has had many years to perfect this little tool for your tool. It all fits together well.
Finally you strap the bag at the end onto your lower leg. This might seem simple enough. It would be simple enough if I had control over my legs. To attach the bag with the included velcro straps, I have to lift my leg onto my bed. Unfortunately if I lift it to an angle and rest it on the bed, it slides off unless I can hold onto it. But I need two hands to attach the bag. If I lift my leg and lay it on the bed straight, turning my body sideways, I run the dual risk of falling sideways off the bed and of not being able to reach down to the lower strap, the one near my ankle.
What I finally did was both. I pulled my leg up in the angular position to strap on the lower part of the bag, trapping it in place with my M-rail. Then I stretched my leg out straight, once again using the M-rail as a brace and attached the upper strap. This, of course, all happened while switching my hands between doing the straps and balancing myself while sitting upright. It's a bit of a circus act.
All in all, this new device adds about 30 minutes to my dressing time, assuming I put it on first thing in the day. I can do it later in the day while sitting in my wheelchair; it takes about the same amount of time. This means my total waking and dressing time can now easily run into about 90 minutes if things go poorly, or be as short as 60 minutes if things go well. No wonder I am late today.
Now all I need to do is head out into the world and hope my bad job this morning doesn't result in wet pants later today. It's a risk. It's always a risk.
This morning, however, did not go so well.
To attach this piece of personal low technology to my body takes a bit of effort. First of all, there is the attachment of the condom catheter itself. As the name suggests, it fits over the penis like a condom. However the beast under attack is not all that cooperative. To use the medical term, it is flaccid. Like a child on the mall floor not wanting to cooperate, it simply plays the "I'll go limp" game and disrupts by default.
The design of the condom catheter is excellent, with a long, loose capture sleeve at the end of the portion which you must wrestle down a loose and floppy target. At first contact, the target retreats inwards, seeking the shelter of its natural resting place. So you kind of have to pull it out, long and skinny, and place the cap over your cap. Then you have to roll the condom portion down while attempt to retain some form of a grip over your pocket snake.
If you want to understand how this might be difficult, go try putting a regular condom over an non-erect penis. Sometimes it works perfectly. Other times it is a challenge. That is all I have to say about that.
The next step is attaching the tubing, a fairly simple process. The equipment is designed with the appropriate attachment ports and comes with the appropriate tubing. Once again the manufacturer has had many years to perfect this little tool for your tool. It all fits together well.
Finally you strap the bag at the end onto your lower leg. This might seem simple enough. It would be simple enough if I had control over my legs. To attach the bag with the included velcro straps, I have to lift my leg onto my bed. Unfortunately if I lift it to an angle and rest it on the bed, it slides off unless I can hold onto it. But I need two hands to attach the bag. If I lift my leg and lay it on the bed straight, turning my body sideways, I run the dual risk of falling sideways off the bed and of not being able to reach down to the lower strap, the one near my ankle.
What I finally did was both. I pulled my leg up in the angular position to strap on the lower part of the bag, trapping it in place with my M-rail. Then I stretched my leg out straight, once again using the M-rail as a brace and attached the upper strap. This, of course, all happened while switching my hands between doing the straps and balancing myself while sitting upright. It's a bit of a circus act.
All in all, this new device adds about 30 minutes to my dressing time, assuming I put it on first thing in the day. I can do it later in the day while sitting in my wheelchair; it takes about the same amount of time. This means my total waking and dressing time can now easily run into about 90 minutes if things go poorly, or be as short as 60 minutes if things go well. No wonder I am late today.
Now all I need to do is head out into the world and hope my bad job this morning doesn't result in wet pants later today. It's a risk. It's always a risk.
Friday, 2 December 2016
More Change
As I move further into this illness, as I get closer to the end of it all, I become more change resistant. I find myself not wanting anything different, anything new, or at least unexpected. It's fairly simple; there's a lot going on inside of me, a lot going on with my body. I don't need a lot going on outside of me, a lot going on in my life. I need stability and safety, not drama and change.
But I'm not necessarily right about this. While changes in my body are inevitable and inevitably bad, changes in my life don't have to be frightening. I just need time to get used to the idea.
My condom catheters arrived on Wednesday; that's right, Wednesday. I put them in the corner at the end of my dresser and left them there. I didn't touch them on Wednesday, nor on Thursday. I put the bag in the corner and continued to live with the mess of my daily life. We've seen this happen before, where a new thing is injected into my life and it takes a while for me to get up the courage to use it.
I finally tried, unsuccessfully, putting one of these things on last night. I failed miserably. You would think this would be a simple thing for me, but remember, this is not your typical prophylactic. It apparently takes some skill and practice to properly enclothe one's male member, aka penis, in one of these things. Today the bag remains in the corner; I will have to try again.
Then there was this morning, a new HCA arrived, with the supervisor. Michael, my regular HCA, has gone home to Nigeria for a couple of months, back to see his Mom and other family members. So in his stead, the agency and I have to train a new Home Care Aide. We don't have to teach her how to do her job in general; it's more about the specifics of caring for me.
This meant going through my whole routine this morning while explaining at each step of the way the reason and purpose for something. I find that if the HCA's know why they are doing something, they tend to be more diligent in doing it. It is another change, another day of finding dishes in the wrong place, another day of directing exercises.
It's probably the toughest thing to deal with these days, the instability of my life. There is very little consistency in things, while what I need most of all is that consistency. I need to feel safe, to feel cared for. I need to feel like I can trust my world to change as little as possible, while I know for a fact that my body is changing constantly. It's one of the things that I can hold on to.
But I'm not necessarily right about this. While changes in my body are inevitable and inevitably bad, changes in my life don't have to be frightening. I just need time to get used to the idea.
My condom catheters arrived on Wednesday; that's right, Wednesday. I put them in the corner at the end of my dresser and left them there. I didn't touch them on Wednesday, nor on Thursday. I put the bag in the corner and continued to live with the mess of my daily life. We've seen this happen before, where a new thing is injected into my life and it takes a while for me to get up the courage to use it.
I finally tried, unsuccessfully, putting one of these things on last night. I failed miserably. You would think this would be a simple thing for me, but remember, this is not your typical prophylactic. It apparently takes some skill and practice to properly enclothe one's male member, aka penis, in one of these things. Today the bag remains in the corner; I will have to try again.
Then there was this morning, a new HCA arrived, with the supervisor. Michael, my regular HCA, has gone home to Nigeria for a couple of months, back to see his Mom and other family members. So in his stead, the agency and I have to train a new Home Care Aide. We don't have to teach her how to do her job in general; it's more about the specifics of caring for me.
This meant going through my whole routine this morning while explaining at each step of the way the reason and purpose for something. I find that if the HCA's know why they are doing something, they tend to be more diligent in doing it. It is another change, another day of finding dishes in the wrong place, another day of directing exercises.
It's probably the toughest thing to deal with these days, the instability of my life. There is very little consistency in things, while what I need most of all is that consistency. I need to feel safe, to feel cared for. I need to feel like I can trust my world to change as little as possible, while I know for a fact that my body is changing constantly. It's one of the things that I can hold on to.
Thursday, 1 December 2016
Cold And Snow
It's snowing today; not the real, icy kind of snow that will stay around, just another reminder from the Sky Gods that winter will soon be here in full force. The snow today is already disappearing. Too bad. I like the snow. I like the gentle covering it provides for the sharp edges of life, the sense of silence it gives to the world around me. I don't mind the cold so much. I must be a Northern spirit.
When I was a young teenager, nothing could have been further from this feeling. As a youngster, I hated the cold. It was a misery to me. I can still feel the chill of having to get up in the mornings, the house cold from the air outside, moisture from the snow and rain creeping into every part of me. Those mornings of chill misery started with having to go outside, further driving the icicles into me, so I could head into the dark, dank gloom of the basement where the ignominy called central heating lived in the devil's embodiment, a wood and coal furnace which perpetually resisted the process of being lit in the mornings, or, for that matter, of staying lit all evening.
That first heat of the day, getting the cold kindling and damp wood to burn, that was warmth. It was that same damp warmth which often flooded the kitchen and living room upstairs with wet smoke and the smell of half burned wood. Success with the hell-fire demon we called a furnace was achieved only with great battle and incredible patience.
I remember bringing wood in from the snow, in from the ice, wood encased in water frozen hard as a rock. I remember smashing at the woodpile, breaking logs loose from their winter binding, readying them to once again dampen the fire and drive more smoke upwards into our tiny house. While I was doing this task of misery, my siblings were enjoying a moment of warmth as my step-mother lit the oil stove in the kitchen. I was not the only one performing this task; my brothers will remember it as well. The odd thing is I don't really remember my Dad doing this, just us boys.
The cold of winter went from being miserable to enjoyable when I was able to see it from the warmth of the living room, from comfort looking through the front window out to the flakes settling slowly earthward. Once I had the option, not driven by the foul furnace necessity, I could sit, cuddled into a blanket, and see the beauty of it all. Then, slowly, I came, over time, to enjoy it both indoors and outdoors. The only thing, the thing which remains important right to this very moment, is having warmth as my settling point, to have a place pre-warmed, ready to take of the chill. And I don't have to light that God damned furnace anymore.
When I was a young teenager, nothing could have been further from this feeling. As a youngster, I hated the cold. It was a misery to me. I can still feel the chill of having to get up in the mornings, the house cold from the air outside, moisture from the snow and rain creeping into every part of me. Those mornings of chill misery started with having to go outside, further driving the icicles into me, so I could head into the dark, dank gloom of the basement where the ignominy called central heating lived in the devil's embodiment, a wood and coal furnace which perpetually resisted the process of being lit in the mornings, or, for that matter, of staying lit all evening.
That first heat of the day, getting the cold kindling and damp wood to burn, that was warmth. It was that same damp warmth which often flooded the kitchen and living room upstairs with wet smoke and the smell of half burned wood. Success with the hell-fire demon we called a furnace was achieved only with great battle and incredible patience.
I remember bringing wood in from the snow, in from the ice, wood encased in water frozen hard as a rock. I remember smashing at the woodpile, breaking logs loose from their winter binding, readying them to once again dampen the fire and drive more smoke upwards into our tiny house. While I was doing this task of misery, my siblings were enjoying a moment of warmth as my step-mother lit the oil stove in the kitchen. I was not the only one performing this task; my brothers will remember it as well. The odd thing is I don't really remember my Dad doing this, just us boys.
The cold of winter went from being miserable to enjoyable when I was able to see it from the warmth of the living room, from comfort looking through the front window out to the flakes settling slowly earthward. Once I had the option, not driven by the foul furnace necessity, I could sit, cuddled into a blanket, and see the beauty of it all. Then, slowly, I came, over time, to enjoy it both indoors and outdoors. The only thing, the thing which remains important right to this very moment, is having warmth as my settling point, to have a place pre-warmed, ready to take of the chill. And I don't have to light that God damned furnace anymore.
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