If I could go back and change anything in my life, it would be the way I acted as a father. I must confess that, while I tried my best, I often think my kids could have done a lot better in the Dad department. This doesn't mean I think I was a bad father, or that my kids were hard done by. I just know that my relationship with them, to this day, is tainted by things I did when they were young and struggles we had when they were teenagers.
The strange thing is that throughout my life I have, first and foremost, defined myself as a Dad. Even to this day, if you ask me what my life has been about, it has been about my kids, doing right by them, helping them, being there for them when they needed me. I wanted to be the kind of Dad that my kids would call when they were in trouble, no matter what that trouble was. I wanted to be the kind of Dad who my kids could come to for advice, guidance, counsel. I wanted to be the kind of Dad my kids trusted.
There is no doubt in my mind that my children love me. I know that they care for me, and about me. I am honoured by they way the have helped me so much in dealing with what life has given me lately. I am also saddened that I was not as much of a Dad to them as they wanted, as much as I wanted to be.
Ultimately my goal as a Dad was to provide a home where they were safe, a home with plenty to eat and warms beds to sleep in, a home where they were happy to invite their friends over, a home where the could grow up knowing that if they screwed up, there was always another chance. I failed to reach all of these goals all of the time, but I like to think, even perhaps lie to myself, that I reached them most of the time.
I miss my children these days, a lot. Kate is here in Calgary and I simply cannot get enough time with her. She is a busy career woman with a life of her own. She tries to see me at least twice a week. I plan my weekly schedule with her in mind, wanting to be sure that I can be there when she is. Ricky, Meaghan, and Mary all live down on the coast. They are quick to remind me that I am the one who moved to Calgary; they're right, I did.
I wish I could be in both places at once, but these days I have to stop thinking like a Dad and start thinking like a man who needs medical and community care. Calgary is the best place in the country to live if you have ALS, and I have no doubt that my longer life has a lot to do with that. But I will never stop being a Dad, thinking like a Dad. I will always want to live up to those standards which I set for myself and yet failed to reach. I love my kids.
Wednesday, 31 August 2016
Tuesday, 30 August 2016
Focus On Living
I you want to be depressed, read this. I have, over time, made it a goal of mine to read as little clinical literature about ALS as possible. In many ways it is like going down a rabbit hole. I will admit that when I was first diagnosed, and for some time after, I wanted to know everything there was to know about this disease. Then, after a while, I realized that knowing all of this would do nothing for my life. Now that I have ALS, I have to learn to live as well as I can with this disease, rather than any of that clinical stuff.
Living with ALS can be very difficult some days. Not all days, but some days. Yesterday was the kind of day where living with ALS not only didn't feel bad, but it felt kind of good in an odd way. Yesterday I had Home Care. She cleaned my apartment, made my bed, took out my garbage, and I didn't have to pay. How many others would like someone to come in every Monday and do that for them, as a part of their regular health care, covered by government medical? Since I have lived in this apartment, almost four years now, I have taken the garbage out perhaps twice. That's it.
Yesterday I transferred into my PWC to go to the train station. I rolled along in the clear summer air, warm breeze pushing past me, moving with no more effort than a push at my wrist. Right turn, twist a bit. Left turn, twist a bit. I know so many people for whom a walk of this length would leave them in great pain. I know people whose work and life have left their bodies almost unworkable. Certainly mine is too, yet here I am, happily rolling along with the wind in what remains of my hair.
When I got to trivia, after sitting at the table for a bit, my feet started to hurt. They do that almost constantly, usually after being in one position for a while. So I used the lay-back function of my PWC to give my feet a lift, to re-position my body to the point where I could almost take a nap. I have, as a part of my daily life, a mobile reclining chair!
One my way home I rolled along Calgary's Riverside Trail. It's amazingly beautiful to see the water rush by, glinting and reflecting the lights of the city; the sound of bushes rustling as the river moved them aside, ever pressing in its desire to reach the sea, at some unseen river mouth far off in Hudson's Bay. I know there are fish in that water; I can't see them but I know they are there. Other people are making this walk with me, even though it is 10:30 PM at night. They feel safe here, and so do I.
Even though it was well after 11:00 PM when I got off the train at Brentwood station, I felt no fear in making the 3 kilometer roll in my PWC. I live in a safe city where most of the sidewalks have wheelchair ramps. It's not perfect, but it is liveable. When I got home to my warm, safe apartment, there was food and drink in the fridge, clean sheets on my bed, air conditioning should the evening become to warm, and Internet, that miracle of the modern era, allowing me to remain connected to all those in my life where distance keeps us apart.
ALS is a terrible disease. I know far more about it that anyone should know. I deal with its devastation every day. I don't want to read about it. I don't want to learn about anything except possible treatments or a cure. I also don't want to let it be the only thing in my life. Living with ALS is not easy, but thanks to so many and so much, I live a pretty decent life. That's what I want to focus on.
Living with ALS can be very difficult some days. Not all days, but some days. Yesterday was the kind of day where living with ALS not only didn't feel bad, but it felt kind of good in an odd way. Yesterday I had Home Care. She cleaned my apartment, made my bed, took out my garbage, and I didn't have to pay. How many others would like someone to come in every Monday and do that for them, as a part of their regular health care, covered by government medical? Since I have lived in this apartment, almost four years now, I have taken the garbage out perhaps twice. That's it.
Yesterday I transferred into my PWC to go to the train station. I rolled along in the clear summer air, warm breeze pushing past me, moving with no more effort than a push at my wrist. Right turn, twist a bit. Left turn, twist a bit. I know so many people for whom a walk of this length would leave them in great pain. I know people whose work and life have left their bodies almost unworkable. Certainly mine is too, yet here I am, happily rolling along with the wind in what remains of my hair.
When I got to trivia, after sitting at the table for a bit, my feet started to hurt. They do that almost constantly, usually after being in one position for a while. So I used the lay-back function of my PWC to give my feet a lift, to re-position my body to the point where I could almost take a nap. I have, as a part of my daily life, a mobile reclining chair!
One my way home I rolled along Calgary's Riverside Trail. It's amazingly beautiful to see the water rush by, glinting and reflecting the lights of the city; the sound of bushes rustling as the river moved them aside, ever pressing in its desire to reach the sea, at some unseen river mouth far off in Hudson's Bay. I know there are fish in that water; I can't see them but I know they are there. Other people are making this walk with me, even though it is 10:30 PM at night. They feel safe here, and so do I.
Even though it was well after 11:00 PM when I got off the train at Brentwood station, I felt no fear in making the 3 kilometer roll in my PWC. I live in a safe city where most of the sidewalks have wheelchair ramps. It's not perfect, but it is liveable. When I got home to my warm, safe apartment, there was food and drink in the fridge, clean sheets on my bed, air conditioning should the evening become to warm, and Internet, that miracle of the modern era, allowing me to remain connected to all those in my life where distance keeps us apart.
ALS is a terrible disease. I know far more about it that anyone should know. I deal with its devastation every day. I don't want to read about it. I don't want to learn about anything except possible treatments or a cure. I also don't want to let it be the only thing in my life. Living with ALS is not easy, but thanks to so many and so much, I live a pretty decent life. That's what I want to focus on.
Monday, 29 August 2016
A Road Trip Dream
I want to go on a road trip. It's an anxiety building within me, a kind of urgency to escape my daily life and become once again an adventurer on the road and sea. Being on the road brings a kind of freedom from ALS though not an escape from the wheelchair. For a bit, for a part of each day, I can forget about the disease as the miles wash away the coat of despair upon me.
The single reason I cannot go is financial. No, this is not a request for help or a setup for a Go Fund Me campaign. It's simply the reason I cannot go. On average, a road trip day costs about $250, depending on where I eat, what I eat, the cost of a wheelchair accessible motel, and the fuel consumed. So the base cost of a two week road trip is around $3,500. Add some extra for special events and such, and you are looking at an easy $4,000 for two weeks. And it's about the same whether you have one person or two or three or even four!
The trip I want to do these days would take me from Calgary to Bella Coola, then on the ferry to Port Hardy. I would like to stay a couple of days in Telelgraph Cove, where I could take a whale watching boat trip for an afternoon, and perhaps a charter fishing trip for another afternoon. It might even be possible to go into the Broughton Islands, possible to Echo Bay, for a side trip. I would love to see those islands and coves again before I die.
Next it would be down to Campbell River for a night, then on to Victoria to visit my son-in-law, my daughter and her two kids. A couple of days in Victoria would be fun. I might even finally get to see Craigdarroch Castle. In all my time in Victoria, I've never visited, although I doubt that it is wheelchair friendly. Even so, just to see the outside would be fun.
The next leg would be a backwards leg, driving up to Port Renfrew, then over the logging roads to Bamfield. I am not sure about accommodations there, but I have already proven that I can sleep in the back of the truck if necessary. I just have to have help getting in there. Or if I am alone, I can also sleep in the front of the truck. I'll just slide over to the passenger seat and lean back.
From Bamfield it would be off to Port Alberni and over to Nanaimo. I'd stay there for the next day, taking the ferry to Gabriola Island and going for dinner in Silva Bay. It's one of loveliest ports in the Gulf Islands, and is another place I would like to see once more. After that, it's off to Vancouver to visit my Mom and Ray, Rick, and Meaghan and family.
The trip home is only a day. However if the right person was with me, and we had the money, I would detour through Seattle for a couple of days, then backtrack to Sedro Wolley. From there I would take the highway through the Cascades to the Washington town of Okanagan, and then head up to Osoyoos for the night. From there, I would wiggle my way home somehow, perhaps with a stop in Nelson or Cranbrook.
I haven't counted the days on this trip. I haven't counted the miles. I haven't done a budget or made a plan or even looked at the ferry schedule. I've done none of this, because I know I can't go. I need two things; money, and a travel partner or partners with a sense of adventure and a willingness to help.
NB. I made a speadsheet. Of course I made a spreadsheet. I have to make a spreadsheet. It's the rule!
The single reason I cannot go is financial. No, this is not a request for help or a setup for a Go Fund Me campaign. It's simply the reason I cannot go. On average, a road trip day costs about $250, depending on where I eat, what I eat, the cost of a wheelchair accessible motel, and the fuel consumed. So the base cost of a two week road trip is around $3,500. Add some extra for special events and such, and you are looking at an easy $4,000 for two weeks. And it's about the same whether you have one person or two or three or even four!
The trip I want to do these days would take me from Calgary to Bella Coola, then on the ferry to Port Hardy. I would like to stay a couple of days in Telelgraph Cove, where I could take a whale watching boat trip for an afternoon, and perhaps a charter fishing trip for another afternoon. It might even be possible to go into the Broughton Islands, possible to Echo Bay, for a side trip. I would love to see those islands and coves again before I die.
Next it would be down to Campbell River for a night, then on to Victoria to visit my son-in-law, my daughter and her two kids. A couple of days in Victoria would be fun. I might even finally get to see Craigdarroch Castle. In all my time in Victoria, I've never visited, although I doubt that it is wheelchair friendly. Even so, just to see the outside would be fun.
The next leg would be a backwards leg, driving up to Port Renfrew, then over the logging roads to Bamfield. I am not sure about accommodations there, but I have already proven that I can sleep in the back of the truck if necessary. I just have to have help getting in there. Or if I am alone, I can also sleep in the front of the truck. I'll just slide over to the passenger seat and lean back.
From Bamfield it would be off to Port Alberni and over to Nanaimo. I'd stay there for the next day, taking the ferry to Gabriola Island and going for dinner in Silva Bay. It's one of loveliest ports in the Gulf Islands, and is another place I would like to see once more. After that, it's off to Vancouver to visit my Mom and Ray, Rick, and Meaghan and family.
The trip home is only a day. However if the right person was with me, and we had the money, I would detour through Seattle for a couple of days, then backtrack to Sedro Wolley. From there I would take the highway through the Cascades to the Washington town of Okanagan, and then head up to Osoyoos for the night. From there, I would wiggle my way home somehow, perhaps with a stop in Nelson or Cranbrook.
I haven't counted the days on this trip. I haven't counted the miles. I haven't done a budget or made a plan or even looked at the ferry schedule. I've done none of this, because I know I can't go. I need two things; money, and a travel partner or partners with a sense of adventure and a willingness to help.
NB. I made a speadsheet. Of course I made a spreadsheet. I have to make a spreadsheet. It's the rule!
Sunday, 28 August 2016
I Am Not Strong
I'm sitting here in my wheelchair wearing nothing but a polo shirt from the Port of Sidney, BC. My rear end is resting on a pair of underwear to protect my wheelchair seat. The reason for my distressful state is the toilet. When I go to the toilet, I essentially have to disrobe my lower half. Then, once complete, I can no longer dress on the toilet. So I make the very difficult transfer to my wheelchair, using my underwear as a protective cover for the seat. I'm not wearing compression socks today; I've spent most of my day in bed so I didn't really need them. Eventually I will have to re-dress myself.
This shirt makes me think of the days and months in years gone by which I would spend aboard my sailboat, visiting and re-visiting ports and towns along the south coast of BC, in the Gulf Islands, around Vancouver Island and right up to Bella Coola. I know that coast so well, I can still see so much of it in my mind, fresh breeze blowing, clouds drifting by, seagulls screaming, whales blowing, fish jumping.
These days the ship of my life is directionless. It possesses no latitude nor longitude, only lassitude. It has no compass heading, no point for which I am making except perhaps death. I am drifting only with the tide of happenstance, no wind in my sails, making no headway. I make only leeway and setting aback. I exist merely to eat, breath, sleep, and go to the toilet. And only eating is easy for me now.
Someone asked me recently where I got my strength from. I answered that it came from the friends and family around me, helping me, giving me a reason to keep going. Yet I don't think of myself as strong. If anything I feel like I am one of the weakest I know. I have no strength of my own. I am essentially incapable of caring for myself. I am reduced to begging for help in so many ways. My emotions are beaten by this disease, this loss of self empowerment, this inability in so many ways. I am not strong just because I fulfill those four basics of life. That is just surviving. I want to be more than a survivor, but I cannot bring myself to that emotional effort. It's all just too tiring.
The strangest thing about being bodily exhausted all the time is that my mind just can't figure it out. I can be up for hours on end, moving little, doing little, slouched on my couch, My body is safe from the effort of movement. I am tired, yet I cannot sleep. My mind keeps going, even though my body has stopped. When my brain gets tired enough to sleep, it is so often completely out of step with my body, with my circadian rhythm, with day and night.
Yet I sit there, lacking the strength to go to bed, to make that transfer, lacking the willpower to force my body to comply. I am weak physically. I am weak in will. I am weak in emotion. I have no strength, not of my own. There is no reason for me to move, yet eventually I do. I'm not strong; by this time I am just so bored that my mind actually is ready to release me to something else. And then I sleep. Or eat. Or go to the toilet. Breathing is constant.
This shirt makes me think of the days and months in years gone by which I would spend aboard my sailboat, visiting and re-visiting ports and towns along the south coast of BC, in the Gulf Islands, around Vancouver Island and right up to Bella Coola. I know that coast so well, I can still see so much of it in my mind, fresh breeze blowing, clouds drifting by, seagulls screaming, whales blowing, fish jumping.
These days the ship of my life is directionless. It possesses no latitude nor longitude, only lassitude. It has no compass heading, no point for which I am making except perhaps death. I am drifting only with the tide of happenstance, no wind in my sails, making no headway. I make only leeway and setting aback. I exist merely to eat, breath, sleep, and go to the toilet. And only eating is easy for me now.
Someone asked me recently where I got my strength from. I answered that it came from the friends and family around me, helping me, giving me a reason to keep going. Yet I don't think of myself as strong. If anything I feel like I am one of the weakest I know. I have no strength of my own. I am essentially incapable of caring for myself. I am reduced to begging for help in so many ways. My emotions are beaten by this disease, this loss of self empowerment, this inability in so many ways. I am not strong just because I fulfill those four basics of life. That is just surviving. I want to be more than a survivor, but I cannot bring myself to that emotional effort. It's all just too tiring.
The strangest thing about being bodily exhausted all the time is that my mind just can't figure it out. I can be up for hours on end, moving little, doing little, slouched on my couch, My body is safe from the effort of movement. I am tired, yet I cannot sleep. My mind keeps going, even though my body has stopped. When my brain gets tired enough to sleep, it is so often completely out of step with my body, with my circadian rhythm, with day and night.
Yet I sit there, lacking the strength to go to bed, to make that transfer, lacking the willpower to force my body to comply. I am weak physically. I am weak in will. I am weak in emotion. I have no strength, not of my own. There is no reason for me to move, yet eventually I do. I'm not strong; by this time I am just so bored that my mind actually is ready to release me to something else. And then I sleep. Or eat. Or go to the toilet. Breathing is constant.
Saturday, 27 August 2016
Not A Good Day
It's wine bottling day today. I am almost ready. Bottles are mostly cleaned and sorted. Supplies have been purchased. Food for the BBQ is in the fridge. Most importantly, the wine is ready for bottling and friends are coming to help. Yet I am not excited, not even very happy. I am tired, so tired of this disease. I am angry, frustrated, exhausted. I am past the tipping point. The only thing that keeps me from ending my own life is this weird combination of fear, courage, hope and curiousity about tomorrow.
I'm angry that I have lost so much, come so far down. I am angry that I can't go to the toilet without the effort causing me to break out in a full sweat. I am frustrated with the many things I drop during the day where I have to work so hard to pick them back up. I am exhausted by the 30 minute effort it takes to empty my dishwasher on my own, assuming I can actually get things into the cupboards without dropping them and breaking them. I am just plain worn out, finding too many things to be too much of an effort.
It's not that I am ready to quit. There will be no suicide note today. It's that almost everything these days seems barely worth the effort. I'm not starting any wine today; it was too expensive to buy and too much to carry. I'm not preparing any food today; I'm leaving that to others. I'm not really making any sort of plan for the day; it's too much effort. I just don't want to do any of it.
Yesterday I put myself through an emotional roller coaster, up and down, high and low, twisted and fast. There was no real reason for it; it began with me imagining, simply imagining that I had made one of my friends angry. There is no reason behind this; it's all in my own mind. Yet my mind rattles on, unconstrained, rolling from stable to tearful, from happy to miserable, and then from miserable to horribly self-condemning. All from nothing.
This emotional roller coaster is a sign perhaps, a sign that my meds are wearing off again. I am going to have to watch myself. On the other hand, it's no surprise that I am tired of all this. It's just too much, too hard, and it's taking way to long.
I'm angry that I have lost so much, come so far down. I am angry that I can't go to the toilet without the effort causing me to break out in a full sweat. I am frustrated with the many things I drop during the day where I have to work so hard to pick them back up. I am exhausted by the 30 minute effort it takes to empty my dishwasher on my own, assuming I can actually get things into the cupboards without dropping them and breaking them. I am just plain worn out, finding too many things to be too much of an effort.
It's not that I am ready to quit. There will be no suicide note today. It's that almost everything these days seems barely worth the effort. I'm not starting any wine today; it was too expensive to buy and too much to carry. I'm not preparing any food today; I'm leaving that to others. I'm not really making any sort of plan for the day; it's too much effort. I just don't want to do any of it.
Yesterday I put myself through an emotional roller coaster, up and down, high and low, twisted and fast. There was no real reason for it; it began with me imagining, simply imagining that I had made one of my friends angry. There is no reason behind this; it's all in my own mind. Yet my mind rattles on, unconstrained, rolling from stable to tearful, from happy to miserable, and then from miserable to horribly self-condemning. All from nothing.
This emotional roller coaster is a sign perhaps, a sign that my meds are wearing off again. I am going to have to watch myself. On the other hand, it's no surprise that I am tired of all this. It's just too much, too hard, and it's taking way to long.
Friday, 26 August 2016
Ten Foot Henry
It's not very often I get to go out with two people I really like, and go to a fabulous restaurant at the same time, plus have them treat me! I managed the trifecta last night, great company, great food, and, well, they paid. I mean, in the grand scheme of things, this is a pretty big deal for me, especially when it all comes together. I don't get out much anymore, and I certainly can't afford the kinds of meals I could at one time in my life.
Todd and Jessica took me out last night. I've known Jessica since I came to Calgary. She was one of the original group of trivia players who ultimately evolved into "the gang". She is a terrific girl, smiling, sensuous, walks like a dancer. She has a terrific sense of humour, one that matches mine almost word for word. My favourite from her was about my Belle Fleur china set. I am quite proud of it. I like it. We were talking about it one day and I told her, again proud of myself, that I picked it out back before I got married. Her response was. "So you had bad taste back then too." Ouch. Funny, but ouch.
Todd is equally funny. I can remember her talking about him when they first met at a board games night, and about her first day skiing with him. She said, even then, that this one had potential. I soon learned why. Todd has a great sense of humour too, plus he can cook. Man can he cook. However he is judicious with this skill. As Jess said last night, "When we go out and Tod says he can make this at home, I know the food is okay. But when he says he won't even try to make this at home, it's because he loves the food and wants to come back here to have them make it for him."
Between the two of them, dinner is always delightful, whether in their home, or, as last night, in a local restaurant. I need to stop for a minute and say something about the restaurant. It's called "Ten Foot Henry", based on the Henry comic character created by Carl Anderson. One day, back in 1981, a local artist did a 10 foot cut out cartoon of Henry on plywood. It's been a fixture in the Calgary scene ever since then. The proprietor of this restaurant has the cut-out, and named the restaurant after it.
The restaurant itself is very different. You don't order a meal; everything is based on share plates. You order the stuff you want to share as a meal, and there are some terrific choices. Now, I don't want to upset the planetary rotation or anything, but last night I tried their Roasted Carrots, and just about stole the whole plate from Todd and Jess.
I couldn't stop raving about them all night long. The chef roasted these large carrot chunks to perfection, served them over some sort of avocado puree, and lightly topped it with a walnut cream sauce. Perfection! Then we had the beef, which was amazing, the pasta, the chicken and the asparagus. Oh, and butterscotch pudding for dessert. All plates had enough for four. I ate some of everything, and lots of the carrots.
As you can see, I had a great dinner and wonderful time out last night. I am lucky to have friends who will do this for me, and with me. Todd is a lucky man, and Jessica is lucky too. They found each other, and they took me to dinner. Not bad.
Todd and Jessica took me out last night. I've known Jessica since I came to Calgary. She was one of the original group of trivia players who ultimately evolved into "the gang". She is a terrific girl, smiling, sensuous, walks like a dancer. She has a terrific sense of humour, one that matches mine almost word for word. My favourite from her was about my Belle Fleur china set. I am quite proud of it. I like it. We were talking about it one day and I told her, again proud of myself, that I picked it out back before I got married. Her response was. "So you had bad taste back then too." Ouch. Funny, but ouch.
Todd is equally funny. I can remember her talking about him when they first met at a board games night, and about her first day skiing with him. She said, even then, that this one had potential. I soon learned why. Todd has a great sense of humour too, plus he can cook. Man can he cook. However he is judicious with this skill. As Jess said last night, "When we go out and Tod says he can make this at home, I know the food is okay. But when he says he won't even try to make this at home, it's because he loves the food and wants to come back here to have them make it for him."
Between the two of them, dinner is always delightful, whether in their home, or, as last night, in a local restaurant. I need to stop for a minute and say something about the restaurant. It's called "Ten Foot Henry", based on the Henry comic character created by Carl Anderson. One day, back in 1981, a local artist did a 10 foot cut out cartoon of Henry on plywood. It's been a fixture in the Calgary scene ever since then. The proprietor of this restaurant has the cut-out, and named the restaurant after it.
The restaurant itself is very different. You don't order a meal; everything is based on share plates. You order the stuff you want to share as a meal, and there are some terrific choices. Now, I don't want to upset the planetary rotation or anything, but last night I tried their Roasted Carrots, and just about stole the whole plate from Todd and Jess.
I couldn't stop raving about them all night long. The chef roasted these large carrot chunks to perfection, served them over some sort of avocado puree, and lightly topped it with a walnut cream sauce. Perfection! Then we had the beef, which was amazing, the pasta, the chicken and the asparagus. Oh, and butterscotch pudding for dessert. All plates had enough for four. I ate some of everything, and lots of the carrots.
As you can see, I had a great dinner and wonderful time out last night. I am lucky to have friends who will do this for me, and with me. Todd is a lucky man, and Jessica is lucky too. They found each other, and they took me to dinner. Not bad.
Thursday, 25 August 2016
Wheelchair Repair Day
It's wheelchair repair day for me today. I've known this day was coming for a while now. It was originally supposed to be months ago, but parts were delayed. Then it was supposed to be last month, later in July, but there were more problems with parts. Finally I got a call last week saying all the parts were in. So today I go to the wheelchair shop where they will take my chair from me for a couple of hours, while I sit and wait, to put on new parts and adjust existing parts.
The bill for all of this will range in the $600 area. The seat sling itself will be almost $200, the arm replacements will be $300, and there are a couple of other minor things which need fixing. Fortunately AISH will pay all but $246 of these costs. I am grateful for this. I've been saving up lately for two major financial issues at the end of this month. The first is my mortgage; this is a three payment month, with the last one coming out on Monday. The second is these repairs.
Sometimes, though, life comes along a kicks you in the ass no matter how prepared you are for it. Last night my daughter, Kate, came over to take me to the wine making shop. She was going to help me buy the supplies for wine making this Saturday. While on our way, I thanked her and told her how much it meant to me to be able to make wine, and to have the social life that it brings me. I said "it's a wonderful hobby for me." She replied, "I understand, but can't you get a cheaper hobby like doing puzzles or painting?" Kate's practical. Generous, but practical, and that generousity was about to be put to the test.
We had gotten downstairs and were all ready to get into my truck. That's when we found out the truck battery was once again dead. This is still part of the trouble from the camping weekend at Jim's. Kate has AMA coverage; that's the Alberta Motor Association, just to be clear. Instead of calling the auto club folks right away, we changed plans and took Kate's car. I can transfer into it using a transfer board. After our shopping spree at the wine store, Kate called the auto club. They gave us a three hour wait time. Kate's chin dropped. She had already worked a full day, taken me to the wine store, and now here she was having to wait another three hours.
I made dinner for us both, and suggested that Kate call them back and explain the situation more clearly, that I was in a wheelchair and that she was with me, but it was my truck we were calling about. They said "It's okay, the driver will put it your your account." So Kate got to go home, and I waited.
When the auto club driver arrived, he did some tests on my battery. It seems we fried it when I let it go dead, two days in a row. It would no longer hold a charge. I needed a new battery. The cost? $150. I started to cry, but managed to catch myself. I said yes and asked if they could use my debit card. The driver said they couldn't, and started to see if they could send me the bill instead. I almost started to cry again, but instead I called Kate to see if she could put it on her credit card.
You see, I have no credit left. I have no room on a credit card, and soon will be in default on said card. I am, plain and simply, unable to pay. That's the way it is. It was also the way that Kate did not get my call; she was driving and her phone was put away. I sent her a text, but she didn't pick that up until she got home. So now, not knowing what to do, I called my Mom. Fortunately she and Ray both agreed that I needed to get this battery, and without even blinking Mom used her credit card to pay for it.
Both Mom and Ray, and Kate too, know I will never be able to repay them. I know it, and I am humbled and broken by my inability to do so. This is not how I planned my life. This is not what I had in mind for the closing days, to be dependent on my Mom and Ray, to need help from family and friends, to be unable to pay my debts. But this is what life is like when it kicks you in the ass.
The bill for all of this will range in the $600 area. The seat sling itself will be almost $200, the arm replacements will be $300, and there are a couple of other minor things which need fixing. Fortunately AISH will pay all but $246 of these costs. I am grateful for this. I've been saving up lately for two major financial issues at the end of this month. The first is my mortgage; this is a three payment month, with the last one coming out on Monday. The second is these repairs.
Sometimes, though, life comes along a kicks you in the ass no matter how prepared you are for it. Last night my daughter, Kate, came over to take me to the wine making shop. She was going to help me buy the supplies for wine making this Saturday. While on our way, I thanked her and told her how much it meant to me to be able to make wine, and to have the social life that it brings me. I said "it's a wonderful hobby for me." She replied, "I understand, but can't you get a cheaper hobby like doing puzzles or painting?" Kate's practical. Generous, but practical, and that generousity was about to be put to the test.
We had gotten downstairs and were all ready to get into my truck. That's when we found out the truck battery was once again dead. This is still part of the trouble from the camping weekend at Jim's. Kate has AMA coverage; that's the Alberta Motor Association, just to be clear. Instead of calling the auto club folks right away, we changed plans and took Kate's car. I can transfer into it using a transfer board. After our shopping spree at the wine store, Kate called the auto club. They gave us a three hour wait time. Kate's chin dropped. She had already worked a full day, taken me to the wine store, and now here she was having to wait another three hours.
I made dinner for us both, and suggested that Kate call them back and explain the situation more clearly, that I was in a wheelchair and that she was with me, but it was my truck we were calling about. They said "It's okay, the driver will put it your your account." So Kate got to go home, and I waited.
When the auto club driver arrived, he did some tests on my battery. It seems we fried it when I let it go dead, two days in a row. It would no longer hold a charge. I needed a new battery. The cost? $150. I started to cry, but managed to catch myself. I said yes and asked if they could use my debit card. The driver said they couldn't, and started to see if they could send me the bill instead. I almost started to cry again, but instead I called Kate to see if she could put it on her credit card.
You see, I have no credit left. I have no room on a credit card, and soon will be in default on said card. I am, plain and simply, unable to pay. That's the way it is. It was also the way that Kate did not get my call; she was driving and her phone was put away. I sent her a text, but she didn't pick that up until she got home. So now, not knowing what to do, I called my Mom. Fortunately she and Ray both agreed that I needed to get this battery, and without even blinking Mom used her credit card to pay for it.
Both Mom and Ray, and Kate too, know I will never be able to repay them. I know it, and I am humbled and broken by my inability to do so. This is not how I planned my life. This is not what I had in mind for the closing days, to be dependent on my Mom and Ray, to need help from family and friends, to be unable to pay my debts. But this is what life is like when it kicks you in the ass.
Wednesday, 24 August 2016
More Quacks
I just deleted a comment from yesterday's blog post. In that blog I was discussing the struggles of budgeting and how grateful I was for the help of others. The comment, unfortunately, in no way spoke to the struggles of living with ALS. This post was a lengthy diatribe by a fellow who claims his mother had ALS, and that she was cured by the special medicine from this doctor I have never heard of.
I know it was an outright scam, but it reminds me of the numbers of people out there with cures, treatments, and all kinds of others things if PALS can only pay for them. Some of these treatments, like the Deanna Protocol, have achieved near clinical status thanks to the people behind them and the fervent belief of those taking them. Then there is the fellow who regularly screams into the ALS support groups on Facebook about how ALS is really Lyme Disease and if we only treated it that way, everyone could be cured. And let's not forget the stem cell clinics of dubious origin in countries lacking in medical standards, proclaiming unprovable cures. Every PALS I've ever talked to online has had little or no benefit from stem cell treatment, and costs that range in the tens of thousands of dollars.
We are a target, some intentional and some truly dedicated in their belief that this particular diet or that particular toxin cleanse will lead to improvement. Yet I see no medical research supporting these claims. There are unique studies going on in legitimate medical centers, yet they do not proclaim miracle results in significant numbers, sometimes not even in small numbers. A single patient who response well to a given protocol does not a cure make.
I think the saddest case I have seen is those who believe that mercury in their teeth fillings is the cause of ALS, and by removing all their fillings they will slow or eliminate their symptoms. They are do desperate to find a cause that even limited coorelations will drive them to strange behaviour. If dental fillings caused ALS, then virtually every person in North America would have the disease.
The truth is that we still don't know what causes this disease. What's more, we still have no viable treatments, nor a cure. No magic doctors with secret potions, no miracle diets, no toxin cleanses, no dental fillings, none of these and so many others things are at the root of this evil. The most powerful thing you can do if you get ALS, is to determine that you will live with it, as well as you can for as long as you can. Wasting money and limited life cycles is not just foolish, it's criminal.
I know it was an outright scam, but it reminds me of the numbers of people out there with cures, treatments, and all kinds of others things if PALS can only pay for them. Some of these treatments, like the Deanna Protocol, have achieved near clinical status thanks to the people behind them and the fervent belief of those taking them. Then there is the fellow who regularly screams into the ALS support groups on Facebook about how ALS is really Lyme Disease and if we only treated it that way, everyone could be cured. And let's not forget the stem cell clinics of dubious origin in countries lacking in medical standards, proclaiming unprovable cures. Every PALS I've ever talked to online has had little or no benefit from stem cell treatment, and costs that range in the tens of thousands of dollars.
We are a target, some intentional and some truly dedicated in their belief that this particular diet or that particular toxin cleanse will lead to improvement. Yet I see no medical research supporting these claims. There are unique studies going on in legitimate medical centers, yet they do not proclaim miracle results in significant numbers, sometimes not even in small numbers. A single patient who response well to a given protocol does not a cure make.
I think the saddest case I have seen is those who believe that mercury in their teeth fillings is the cause of ALS, and by removing all their fillings they will slow or eliminate their symptoms. They are do desperate to find a cause that even limited coorelations will drive them to strange behaviour. If dental fillings caused ALS, then virtually every person in North America would have the disease.
The truth is that we still don't know what causes this disease. What's more, we still have no viable treatments, nor a cure. No magic doctors with secret potions, no miracle diets, no toxin cleanses, no dental fillings, none of these and so many others things are at the root of this evil. The most powerful thing you can do if you get ALS, is to determine that you will live with it, as well as you can for as long as you can. Wasting money and limited life cycles is not just foolish, it's criminal.
Tuesday, 23 August 2016
Budgeting
August has been a month filled with generousity for me. I have once again been help in so many ways, ways which I had not expected. This kindness and generousity takes an incredible amount of pressure off of me, freeing me from worry over not just the bills, but some of the extras which mean a great deal to my quality of life.
It started off early in the month, where a family member gave me $400 and said to me that I should spend it on whatever I like. I took his advice, purchasing some treats for myself, paying for my drivers's licence, and using the rest for groceries and typical spending. Then another person, a regular reader of my blog, helped me purchase gifts for my grandchildren, the Lego characters in wheelchairs. I expect them to arrive any day and look forward to giving them to my children and grandchildren. I realize it may not make much of an impact on the young ones right now, but there will come a day in the future when they will look at that toy, that little Lego character, and remember that I once was here.
Just a few days ago another friend took me grocery shopping, and paid for my groceries. And the other friend who showed up for dinner with a big package of Sirloin Steak and another package of Tuna Steaks. My freezer is near full. Then there is the friend who slips me $40 every week or so, allowing me to go to Trivia nights on Mondays or perhaps out to a social event every now and again. This doesn't mean I get to life a wild life of parties and bars; I still have to make careful choices. It means that I get to be social, as much as I can. That matters a great deal to me.
All of the generousity means that I have saved enough this month to make the "third" mortgage payment of the month. If it wasn't for this third mortgage payment, I might actually have been able to pay my condo fees this month, something I worry about every month, something I have fallen far behind in paying. It is a wonderful thing to have such help.
This is not to say my life is all wonder and fun, a life long shopping spree. I've had to make a couple of tough choices this month, like the decision not to get the radio in my truck fixed. The $175 for diagnosis and the potential $800 for a replacement Auxiliary Power Control Module was enough to convince me I didn't need a radio, or hands free for my phone. I can live without it.
What's more troublesome is the bill for my wheelchair repairs. The wheelchair is something I cannot live without, and since it is "my" wheelchair, the government will not pay for repairs, at least not the Alberta Activities of Daily Living fund. The bill will run around $600, but fortunately the Assured Income for the Severely Disabled has a subsidy for this, so the end bill to me will be around $250.
So I didn't go to Trivia last night. That saves me $25. If I avoid buying fresh stuff from the grocery store and don't go to trivia next Monday, I should just make it. I'll ask my daughter Kate to buy the wine bottling supplies and extra bottles. Then I'll take the $250 from the money intended for my mortgage, pushing that deficit into next month; I'll have to deal with it then. And I have $18 in my wallet for emergencies. Fortunately payday is this Friday from AISH and next Monday from CPP. This is what my life is right now, living from paycheque to paycheque.
Budgeting has become a big part of my life now. I can live with it. It's not easy but I can live with it. The help from others makes a dramatic difference in my life. I just need to find a job where I can work with my mind, work from home, and make about $500 a month. Surely that must be out there somewhere.
It started off early in the month, where a family member gave me $400 and said to me that I should spend it on whatever I like. I took his advice, purchasing some treats for myself, paying for my drivers's licence, and using the rest for groceries and typical spending. Then another person, a regular reader of my blog, helped me purchase gifts for my grandchildren, the Lego characters in wheelchairs. I expect them to arrive any day and look forward to giving them to my children and grandchildren. I realize it may not make much of an impact on the young ones right now, but there will come a day in the future when they will look at that toy, that little Lego character, and remember that I once was here.
Just a few days ago another friend took me grocery shopping, and paid for my groceries. And the other friend who showed up for dinner with a big package of Sirloin Steak and another package of Tuna Steaks. My freezer is near full. Then there is the friend who slips me $40 every week or so, allowing me to go to Trivia nights on Mondays or perhaps out to a social event every now and again. This doesn't mean I get to life a wild life of parties and bars; I still have to make careful choices. It means that I get to be social, as much as I can. That matters a great deal to me.
All of the generousity means that I have saved enough this month to make the "third" mortgage payment of the month. If it wasn't for this third mortgage payment, I might actually have been able to pay my condo fees this month, something I worry about every month, something I have fallen far behind in paying. It is a wonderful thing to have such help.
This is not to say my life is all wonder and fun, a life long shopping spree. I've had to make a couple of tough choices this month, like the decision not to get the radio in my truck fixed. The $175 for diagnosis and the potential $800 for a replacement Auxiliary Power Control Module was enough to convince me I didn't need a radio, or hands free for my phone. I can live without it.
What's more troublesome is the bill for my wheelchair repairs. The wheelchair is something I cannot live without, and since it is "my" wheelchair, the government will not pay for repairs, at least not the Alberta Activities of Daily Living fund. The bill will run around $600, but fortunately the Assured Income for the Severely Disabled has a subsidy for this, so the end bill to me will be around $250.
So I didn't go to Trivia last night. That saves me $25. If I avoid buying fresh stuff from the grocery store and don't go to trivia next Monday, I should just make it. I'll ask my daughter Kate to buy the wine bottling supplies and extra bottles. Then I'll take the $250 from the money intended for my mortgage, pushing that deficit into next month; I'll have to deal with it then. And I have $18 in my wallet for emergencies. Fortunately payday is this Friday from AISH and next Monday from CPP. This is what my life is right now, living from paycheque to paycheque.
Budgeting has become a big part of my life now. I can live with it. It's not easy but I can live with it. The help from others makes a dramatic difference in my life. I just need to find a job where I can work with my mind, work from home, and make about $500 a month. Surely that must be out there somewhere.
Monday, 22 August 2016
Another Bad Night
I'm tired today. I did not sleep well last night, and thanks to a broken dryer in the laundry room, my laundry didn't finish in the dryer until 12:30 AM. So I had a short night, and a bad night. Of course, I shouldn't complain. I got 9 hours of sleep for sure, and when my Home Care Aide came this morning, she spent her first hour cleaning instead of getting me up. That meant another hour of sleep for me, or at least rest; I didn't actually sleep that last hour.
Exhaustion is just a part of the deal with ALS. I don't know how other PALS do it. For me, it's just more sleep. Yet no matter how much sleep I get, I am still tired all the time. I've experimented, trying a variety of sleep times and patterns. I've gone to bed early. I've stayed up late. I've slept 16 hours at a stretch. I've slept 8 hours and then had a nap in the afternoon. It seems no matter what I do, I get to be tired all the time.
This is especially challenging when going through a difficult stretch in your life, as I have been for the last couple of weeks. Relationship changes are hard, no matter how they work out, and that emotional effort is as exhausting as physical work for me. I am adjusting, working at life as it is for me now. That adjustment means I need more rest, more sleep than whatever the hell normal is for me.
The other challenge with constant exhaustion is depression. I'm not sure if I am tired because I am depressed, or depressed because I am tired. Either way, I don't have a lot of energy and I don't see a lot for me to be energetic about. Let's see. I'm not eating well. I'm not sleeping well. I'm struggling with being interested in anything. That might look like depression to you. To me it just looks like another day with ALS. I hate this fucking disease. It's an awful way to live, and a terrible way to die.
Exhaustion is just a part of the deal with ALS. I don't know how other PALS do it. For me, it's just more sleep. Yet no matter how much sleep I get, I am still tired all the time. I've experimented, trying a variety of sleep times and patterns. I've gone to bed early. I've stayed up late. I've slept 16 hours at a stretch. I've slept 8 hours and then had a nap in the afternoon. It seems no matter what I do, I get to be tired all the time.
This is especially challenging when going through a difficult stretch in your life, as I have been for the last couple of weeks. Relationship changes are hard, no matter how they work out, and that emotional effort is as exhausting as physical work for me. I am adjusting, working at life as it is for me now. That adjustment means I need more rest, more sleep than whatever the hell normal is for me.
The other challenge with constant exhaustion is depression. I'm not sure if I am tired because I am depressed, or depressed because I am tired. Either way, I don't have a lot of energy and I don't see a lot for me to be energetic about. Let's see. I'm not eating well. I'm not sleeping well. I'm struggling with being interested in anything. That might look like depression to you. To me it just looks like another day with ALS. I hate this fucking disease. It's an awful way to live, and a terrible way to die.
Sunday, 21 August 2016
Living Normally
There is a lot of "normal stuff" in my life, stuff that has nothing to do with ALS. It's the kind of day to day normalcy that most of us take for granted. I don't. I don't take it for granted. Even the normal stuff is exciting to me, most often because it's something I can still do, or something that makes me feel like my life is normal.
Today, for example, is "cleaning out the fridge" day. I'm not going to wipe it or wash it out. Today I am going to take all of my leftovers and convert them into a really terrific meal. I plan on taking the leftover pork roast and serving it as an open faced sandwich with gravy. I plan on taking the mushrooms I forgot to eat the other day and putting them on the sandwich too. Then there is the chorizo sausage; I can't eat it, it's too spicy for me these days. But I can serve it to my guests for dinner tonight. I am sure they will love it, just as they will love the Jambalaya that Adam made for me when he was here. It's out of the freezer and I've added a bit of rice, some of that chorizo that I won't eat, and some Cajun spice mix to stretch it all a bit.
There are a few meatballs left, with some beans, and I am saving those for myself, just in case the pork roast doesn't go far enough for everyone. I am fine with a few meatballs, some Jambalaya, and some gravy. I'm using up an opened package of frozen mixed vegetables to top it all off, or I might use the cucumber and tomato in the fridge to make a bit of a salad.
I'm pretty sure there will be plenty to go round, perhaps even leaving me a bit for tomorrow so I can eat before I go to Trivia. Regardless, all of this is so normal, so regular. It has nothing to do with ALS. It has everything to do with living, living normally. That's why I like it. That's why it is interesting.
Today, for example, is "cleaning out the fridge" day. I'm not going to wipe it or wash it out. Today I am going to take all of my leftovers and convert them into a really terrific meal. I plan on taking the leftover pork roast and serving it as an open faced sandwich with gravy. I plan on taking the mushrooms I forgot to eat the other day and putting them on the sandwich too. Then there is the chorizo sausage; I can't eat it, it's too spicy for me these days. But I can serve it to my guests for dinner tonight. I am sure they will love it, just as they will love the Jambalaya that Adam made for me when he was here. It's out of the freezer and I've added a bit of rice, some of that chorizo that I won't eat, and some Cajun spice mix to stretch it all a bit.
There are a few meatballs left, with some beans, and I am saving those for myself, just in case the pork roast doesn't go far enough for everyone. I am fine with a few meatballs, some Jambalaya, and some gravy. I'm using up an opened package of frozen mixed vegetables to top it all off, or I might use the cucumber and tomato in the fridge to make a bit of a salad.
I'm pretty sure there will be plenty to go round, perhaps even leaving me a bit for tomorrow so I can eat before I go to Trivia. Regardless, all of this is so normal, so regular. It has nothing to do with ALS. It has everything to do with living, living normally. That's why I like it. That's why it is interesting.
Saturday, 20 August 2016
Ask Me Anything
I said you could Ask Me Anything, and I would answer. Well, today is the day, so here goes.
Before getting into any specific individual answers, there were lots of questions about me and Katherine. I am still hoping that Katherine might once again become a close part of my life. She is a very special woman, a "gem" as my brother says, and I will not say anything here which might get in the way. What I will say is that ALS had nothing to do with our parting. Katherine is far too kind, generous, and honorable to let something as simple as an illness get in her way.
So, as to the rest...
Michelle14 August 2016 at 08:00
Richard...what was your occupation before this horrible disease? Concerning Katherine..why did she leave you? She seemed to love you very much..get back together possibly?can you still eat regular foods without choking?would you consider a peg or in the future be on vent? I read your blog every day and hope for happiness we all deserve and am so sorry you are going through this..not fair..I do care
Before ALS I was a Project Manager and Project Management Trainer/Consultant. My field of specialty is technology. If you ask me to fix your computer, I likely cannot do that. If you ask me to fix 100,000 computers, that I can manage. As to a peg or vent, no to both. I plan on letting nature take its course. If nature gets too nasty, I will help it along.
Denise Jordan14 August 2016 at 12:55
Are you still making wine? Have you ever considered a communal living situation? Why did you and Katherine split.....you guys seemed so good for each other? From where do you draw your strength? You are my hero!
Yes, I am still making wine, and loving it. The two major challenges I have these days is the cost of it all, and the heavy lifting. Thanks to support from friends and family, the heavy lifting and the bottling is pretty much looked after. Thanks to donations to the blog and from others, I can still afford the wine making kits and supplies. As to my strength, I draw it from those around me, the friends and family who make my life worth living. They are the reason I keep going, that and my curiousity about what will happen tomorrow.
Eva14 August 2016 at 16:15
Have you considered that now might be the time to move into a home. I know it's not the same situation at all, by my elderly inlaws left moving into a nursing home until there really was no other choice and consequently that event happened with much less of their input and control than they would have wished for. Little things
like choosing how to dispose of their belongings ( there is only so much you can bring) were left to the kids to deal with. Also the more care you require when you move in the less you are able to take part in the community aspects of nursing home living.
Lastly I don't know about Alberta but the sooner you get yourself on the waiting lists here the more choice you have in what the eventual placement will be, and trust me not all homes are created equal.
I will never move into a home. I will die in my apartment, in my home. If that means making a difficult choice at some point, I will make it. Of course, as will all things related to this disease, it is possible this line in the sand will move. I'll let you know if it does.
Fred Nurke14 August 2016 at 16:46
How do magnets work?
The north pole of one magnet attracts the south pole of a second magnet, while the north pole of one magnet repels the other magnet's north pole. So we have the common saying: like poles repel, unlike poles attract. A magnet creates an invisible area of magnetism all around it called a magnetic field. Enough? Or shall I get into atomic alignment?
MrMat14 August 2016 at 21:39
Is the amount of sleeping you do "typical" for those with ALS? Does it vary from person to person as well as stage of the disease?
I have not real good measure on what amount of sleep is "typical" for people with ALS. I know we need more sleep than most, and that exhaustion is a very common part of the disease. I also know that as the disease progresses, most of us need increasing amounts of rest. But if you think about it, the harder it becomes for us to do so many things, the more exhausted we become in doing them. Even more, remember that my brain is still working hard to get those muscles moving, even though they don't respond, so there is exhaustion there too.
In your opinion, which is better for those with a slowly progressing disease? Canada or the United States? Why?
For almost any medical situation, my vote will almost always go to Canada. This is particularly true for a debilitating and progressive disease. I believe our health care and social care systems a superior to those of the US. General health outcomes, childhood mortality, and survival rates from disease all support my view.
If you could have 3 wishes, what would they be (and you can't wish for unlimited wishes).
1. A cure for ALS
2. A cure for Alzheimer's.
3. Enough money to help myself and others who have lost everything to this disease get back to where they were before they got sick, and then a bit more for their other losses.
Let's assume ALS was 100% cured tomorrow. What superability would you prefer? To be like Superman? Or telepathy (mind control)? Or another ability? And WHY? :-)
I want no superpowers at all. None. "With great power comes great responsibility." Voltaire/Ben Parker. I just want to be a regular person, a normal guy.
How long do you think it will be before you are done driving?
I'm not really sure about this, given the nature of progression for me, but I suspect this is my last year of driving. I don't see myself renewing my insurance next February.
Is there a particular milestone you have in your mind where you think it will no longer be "worth the effort?" If so, what is that milestone?
There used to be, but then I learned how hard it is to do the deed. I like what my friend Mike says. "One morning, Richard, you will wake up and just decide you've had enough." However losing the ability to eat or breathe might be pretty tough to get past.
If you could time travel, where & when are the top three places you would visit?
1. 1770's - At sea with Captain James Cook and later with Captain George Vancouver
2. 65 Million Years ago - anywhere on the planet where I could see the dinosaurs
3. Tomorrow - always tomorrow, just one step ahead of death.
If you could send back a note or bit of advice to yourself when you were very first diagnosed, what would that note say?
It looks pretty grim right now, but there are still plenty of good things to come. And you're going to live a lot longer than that 36 month prognosis, so take it easy with your money.
Are you watching the Olympics?
No. Not all that interested.
jo15 August 2016 at 05:40
How do you handle day to day things now without help? What do you do when you fall without anyone around?
My arms are still reasonably functional, although increasingly weaker. So I do much of my "normal" stuff as usual. There are things, like sweeping the floor or cleaning the bathroom which I cannot do. These I leave to home care. I make use of my PWC lift function to get up to things high in the cupboards. I use my grabby stick to pick up things I drop. I use the various slings and lifts in my apartment to move my body around as needed. I ALWAYS keep a sling powered up with the controls near the floor so that when I fall, I can slide over to a sling and pick myself up. Either that, or I call 911. Both have happened.
Patty15 August 2016 at 16:43
Curious how you are getting along without Katherine? Was it an amicable parting? I know from your blog, she helped you in many ways. You mentioned she also helped financially. Will you get along okay without the financial help?
Also curious about long term care in Canada. Here in the states it is very very costly to go into an assisted living facility or hire "in house" help ($20-30/hour; $150-$200 for 24 hour help). I actually felt quiet sad when I read your post about you and Katherine.
Yes, Katherine helped me a great deal, but I will be fine without that financial help. That's not what I want, or wanted, from Katherine. Now I am being forced to turn to family more, and I am looking for some sort of work that I can do from home which is not too stressful. I don't know a lot about the long term care situation here in Canada, although I know that subsidized cases, like I would be, take about 2/3 of your income, leaving the rest to you. As to in house care, my home care is completely funded, so I have no idea with respect to costs.
Mary Toki16 August 2016 at 06:41
Hi richard. You mentioned that your als has not progressed in the last 12 months and that you have remained fairly stable. You also mentioned you think slow progression could be because you are carrying extra weight. Do you also think there is any link in alcohol consumtion slowing the progress of als being that it is a cns depressant? Strange question i know, but ive read you like to drink and thought perhaps there could be something to it..
My ALS has progressed, slowly. I have no idea how alcohol consumption affects progression, but wouldn't it be ironic and wonderful if excessive drinking slowed the progression of ALS. I would so laugh out loud at that. I just drink because I like it; not every day, sometimes too much in a day.
jo16 August 2016 at 11:55
How is your speech effected with ALS? My friend has PLS and as affected his swallowing and speech.
Most people think my speech is not affected by ALS, but I can tell that there are some changes. I have trouble now and again with word formation, plus my tongue gets in the way at times. What's more I tend to bite my inner lip and tongue on the left side, and that just plain hurts. Oh, and I tend to run out of breath after a long sentence or in the middle of a paragraph of speaking.
Betty Marxen16 August 2016 at 13:28
Hi Richard, I really appreciate this blog you share with us. It has helped me to understand some things the doctors don't answer. I am curious about several things, in your earlier writings you seemed to want to be in your manual chair more than your power chair - I would think it would be easier in your power chair. what are the pros and cons? You also talk about your plans to end your life. Right now my husband is refusing a feeding tube. I think there could be a chance of quality of life with it, and he doesn't have to use it but at least it could be an option that he might keep hydrated... have you made a decision on those issues? thanks...
When my arms were stronger, I preferred my manual chair; more agility, more freedom, easier to access. As I have weakened in my arms, the power chair just makes more sense. But I can't use my PWC when I want to go out in my truck, at least not without someone to load it in the back for me.
Let your husband make his own decision, and support him in that decision. This is a tough enough illness without fighting over it with someone you love. Some find quality of life with intervention, others come to despise it. I will not use a feeding tube, or a vent. I want nature to take it's course. I suspect that is how he feels too.
Elizabeth Feltham16 August 2016 at 18:44
Do you use antidepressants? Yes, for depression and for FTD
Would you consider mechanical intubation, or stop at BIPAP, or neither? No. When I'm done, I'm done.
Why did you and your wife divorce? Irreconcilable differences. Too many to mention.
Is there ANY chance you and Katherine can reconcile? Yes
Is there any decent seafood to be had in Calgary? Perhaps in one or two places, but not many and none which I would care to recommend.
Do you own a cowboy hat? No
Have you tried any alternate therapies like hypnotherapy? No. I do what my medical team says. They are trained, experienced, and fully up to date with the current research.
Have you tried following the Lunasin Duke protocol, or the Deanna Protocol? No. My medical team has not recommended it.
Have you been to Drumheller? Yes, several times. Love it.
What is your favourite cut of beef? Cow. Oh, wait. Prime Rib or a really thick Rib Steak.
Boxers, briefs, or commando? Boxers unless commando is called for.
Tara17 August 2016 at 17:40
I'd like to know more about your children.
I intentionally don't say much about my children in this blog, out of respect for their privacy. I will ask them what they think about me saying more about them. It's up to them.
TNA17 August 2016 at 20:06
Where r u going for your next vacation?
I doubt there will be another "major" vacation. I'm out of money. In terms of short trips, I hope to get down to Vancouver to see my Mom and Ray, along with my children and grandchildren. That might happen later this summer, or perhaps this fall. I'm also headed to a friends wedding in Saskatoon in October, assuming I can get the money together.
TNA17 August 2016 at 20:08
You have 4 brothers, but you only write about 3. What about the 4th one?
My youngest brother and I do not talk much. I have only spoken with him once or twice since my diagnosis. Nor do we see each other much, only once since diagnosis.
TNA17 August 2016 at 20:10
Keep on blogging... Do other members of your fam write as well? Would love to hear what they have to say about living with or having a family member with als.
My daughter Meaghan is an excellent writing. She has a food blog she updates periodically. The others have creative talents in different directions. I will ask them if they might be willing to write something for the blog now and again. It's up to them.
jo19 August 2016 at 23:28
Do you any medical facility in your area that is knowledgeable on ALS? Are you at all religious ?
I am tremendously fortunate to live in Calgary, AB, one of Canada's leading centers for neurological research and one of Canada's leading centers for the treatment of ALS, such as it is. As to religion, I am not religious, but I do believe in God, just not the way most people do. Click to this post and might help you understand.
TNA20 August 2016 at 00:59
As your
condition progresses, is you family closer to you? Has your ex-wife called you concerned about your health?
My ex-wife has not spoken to me since I was diagnosed, nor have I attempted to speak to her. My family, especially my daughter Kate, has grown much closer to me of late. I am grateful for her and my other children, for my brothers, for my Mom and Ray. My friends have grown closer too.
TNA20 August 2016 at 01:04
Have you paid off your truck?
I worked out a deal with Ford and I now own my truck. I am grateful to Ford Canada for all their help with this. My truck is my lifeline.
Michelle20 August 2016 at 05:52
You have traveled quite a bit.....what is the one place you have visited that is a must see for everyone to vacation ? Mine was the grand canyon. And what would you say is your biggest regret and what would you have changed in your life if anything? Next question is personal....would you consider wearing an adult diaper?
To have a "must see" for everyone assumes everyone is interested in the same things I am interested in. There are amazing places on this planet, like the Grand Canyon, or the coast of BC, or the sands of the Arab desert. There are wonderful buildings, like the London Natural History Museum or the Duomo in Milan. But my favourite place of all was on the back of my sailboat, in the Broughton Archipelago, fishing for salmon. Regrets? I've had a few, but then again too few to mention. I regret returning to a bad marriage for another decade of unhappiness. I would change that if I could. But very little else. I've had a pretty good life, all things considered.
TNA20 August 2016 at 13:17
Sounds like you like to cook. Can you share some of your fave dishes/baked goodies? Who taught you these skills?
I love to cook. I like baking too, but not as much. My favourite dishes? I love to grill up a good steak, or pan fry some chicken. I make a mean Seafood Risotto and Caprese Salad. Lasagna always stands up well in my kitchen. I roast a fine turkey, and lamb too. Plus I love to make Lamb Shank in my slow cooker. As to who taught, my Mom will admit it was not her. I mostly taught myself.
Greg Fusco20 August 2016 at 13:50
If someone wanted to send you somethings in the mail. What address should they use?
Suite 309B - 3719 49th St., Calgary, AB T3A 2E3
No religious materials please. No treatment or cure suggestions please. No solicitations please.
TNA20 August 2016 at 13:56
Do you ever say "why me?'? Do you ever
blame something that may have happened to you in the past that "caused" you to have als?
I often ask, "Why me?" But then I remind myself of how pointless that question is. Nobody knows the answer, and even if we did, it won't make any difference. I don't bother looking for things in my past which might have caused ALS either. My life is like so many others that if we look at what happened to me, then the whole world should have ALS.
Before getting into any specific individual answers, there were lots of questions about me and Katherine. I am still hoping that Katherine might once again become a close part of my life. She is a very special woman, a "gem" as my brother says, and I will not say anything here which might get in the way. What I will say is that ALS had nothing to do with our parting. Katherine is far too kind, generous, and honorable to let something as simple as an illness get in her way.
So, as to the rest...
Michelle14 August 2016 at 08:00
Richard...what was your occupation before this horrible disease? Concerning Katherine..why did she leave you? She seemed to love you very much..get back together possibly?can you still eat regular foods without choking?would you consider a peg or in the future be on vent? I read your blog every day and hope for happiness we all deserve and am so sorry you are going through this..not fair..I do care
Before ALS I was a Project Manager and Project Management Trainer/Consultant. My field of specialty is technology. If you ask me to fix your computer, I likely cannot do that. If you ask me to fix 100,000 computers, that I can manage. As to a peg or vent, no to both. I plan on letting nature take its course. If nature gets too nasty, I will help it along.
Denise Jordan14 August 2016 at 12:55
Are you still making wine? Have you ever considered a communal living situation? Why did you and Katherine split.....you guys seemed so good for each other? From where do you draw your strength? You are my hero!
Yes, I am still making wine, and loving it. The two major challenges I have these days is the cost of it all, and the heavy lifting. Thanks to support from friends and family, the heavy lifting and the bottling is pretty much looked after. Thanks to donations to the blog and from others, I can still afford the wine making kits and supplies. As to my strength, I draw it from those around me, the friends and family who make my life worth living. They are the reason I keep going, that and my curiousity about what will happen tomorrow.
Eva14 August 2016 at 16:15
Have you considered that now might be the time to move into a home. I know it's not the same situation at all, by my elderly inlaws left moving into a nursing home until there really was no other choice and consequently that event happened with much less of their input and control than they would have wished for. Little things
like choosing how to dispose of their belongings ( there is only so much you can bring) were left to the kids to deal with. Also the more care you require when you move in the less you are able to take part in the community aspects of nursing home living.
Lastly I don't know about Alberta but the sooner you get yourself on the waiting lists here the more choice you have in what the eventual placement will be, and trust me not all homes are created equal.
I will never move into a home. I will die in my apartment, in my home. If that means making a difficult choice at some point, I will make it. Of course, as will all things related to this disease, it is possible this line in the sand will move. I'll let you know if it does.
Fred Nurke14 August 2016 at 16:46
How do magnets work?
The north pole of one magnet attracts the south pole of a second magnet, while the north pole of one magnet repels the other magnet's north pole. So we have the common saying: like poles repel, unlike poles attract. A magnet creates an invisible area of magnetism all around it called a magnetic field. Enough? Or shall I get into atomic alignment?
MrMat14 August 2016 at 21:39
Is the amount of sleeping you do "typical" for those with ALS? Does it vary from person to person as well as stage of the disease?
I have not real good measure on what amount of sleep is "typical" for people with ALS. I know we need more sleep than most, and that exhaustion is a very common part of the disease. I also know that as the disease progresses, most of us need increasing amounts of rest. But if you think about it, the harder it becomes for us to do so many things, the more exhausted we become in doing them. Even more, remember that my brain is still working hard to get those muscles moving, even though they don't respond, so there is exhaustion there too.
In your opinion, which is better for those with a slowly progressing disease? Canada or the United States? Why?
For almost any medical situation, my vote will almost always go to Canada. This is particularly true for a debilitating and progressive disease. I believe our health care and social care systems a superior to those of the US. General health outcomes, childhood mortality, and survival rates from disease all support my view.
If you could have 3 wishes, what would they be (and you can't wish for unlimited wishes).
1. A cure for ALS
2. A cure for Alzheimer's.
3. Enough money to help myself and others who have lost everything to this disease get back to where they were before they got sick, and then a bit more for their other losses.
Let's assume ALS was 100% cured tomorrow. What superability would you prefer? To be like Superman? Or telepathy (mind control)? Or another ability? And WHY? :-)
I want no superpowers at all. None. "With great power comes great responsibility." Voltaire/Ben Parker. I just want to be a regular person, a normal guy.
How long do you think it will be before you are done driving?
I'm not really sure about this, given the nature of progression for me, but I suspect this is my last year of driving. I don't see myself renewing my insurance next February.
Is there a particular milestone you have in your mind where you think it will no longer be "worth the effort?" If so, what is that milestone?
There used to be, but then I learned how hard it is to do the deed. I like what my friend Mike says. "One morning, Richard, you will wake up and just decide you've had enough." However losing the ability to eat or breathe might be pretty tough to get past.
If you could time travel, where & when are the top three places you would visit?
1. 1770's - At sea with Captain James Cook and later with Captain George Vancouver
2. 65 Million Years ago - anywhere on the planet where I could see the dinosaurs
3. Tomorrow - always tomorrow, just one step ahead of death.
If you could send back a note or bit of advice to yourself when you were very first diagnosed, what would that note say?
It looks pretty grim right now, but there are still plenty of good things to come. And you're going to live a lot longer than that 36 month prognosis, so take it easy with your money.
Are you watching the Olympics?
No. Not all that interested.
jo15 August 2016 at 05:40
How do you handle day to day things now without help? What do you do when you fall without anyone around?
My arms are still reasonably functional, although increasingly weaker. So I do much of my "normal" stuff as usual. There are things, like sweeping the floor or cleaning the bathroom which I cannot do. These I leave to home care. I make use of my PWC lift function to get up to things high in the cupboards. I use my grabby stick to pick up things I drop. I use the various slings and lifts in my apartment to move my body around as needed. I ALWAYS keep a sling powered up with the controls near the floor so that when I fall, I can slide over to a sling and pick myself up. Either that, or I call 911. Both have happened.
Patty15 August 2016 at 16:43
Curious how you are getting along without Katherine? Was it an amicable parting? I know from your blog, she helped you in many ways. You mentioned she also helped financially. Will you get along okay without the financial help?
Also curious about long term care in Canada. Here in the states it is very very costly to go into an assisted living facility or hire "in house" help ($20-30/hour; $150-$200 for 24 hour help). I actually felt quiet sad when I read your post about you and Katherine.
Yes, Katherine helped me a great deal, but I will be fine without that financial help. That's not what I want, or wanted, from Katherine. Now I am being forced to turn to family more, and I am looking for some sort of work that I can do from home which is not too stressful. I don't know a lot about the long term care situation here in Canada, although I know that subsidized cases, like I would be, take about 2/3 of your income, leaving the rest to you. As to in house care, my home care is completely funded, so I have no idea with respect to costs.
Mary Toki16 August 2016 at 06:41
Hi richard. You mentioned that your als has not progressed in the last 12 months and that you have remained fairly stable. You also mentioned you think slow progression could be because you are carrying extra weight. Do you also think there is any link in alcohol consumtion slowing the progress of als being that it is a cns depressant? Strange question i know, but ive read you like to drink and thought perhaps there could be something to it..
My ALS has progressed, slowly. I have no idea how alcohol consumption affects progression, but wouldn't it be ironic and wonderful if excessive drinking slowed the progression of ALS. I would so laugh out loud at that. I just drink because I like it; not every day, sometimes too much in a day.
jo16 August 2016 at 11:55
How is your speech effected with ALS? My friend has PLS and as affected his swallowing and speech.
Most people think my speech is not affected by ALS, but I can tell that there are some changes. I have trouble now and again with word formation, plus my tongue gets in the way at times. What's more I tend to bite my inner lip and tongue on the left side, and that just plain hurts. Oh, and I tend to run out of breath after a long sentence or in the middle of a paragraph of speaking.
Betty Marxen16 August 2016 at 13:28
Hi Richard, I really appreciate this blog you share with us. It has helped me to understand some things the doctors don't answer. I am curious about several things, in your earlier writings you seemed to want to be in your manual chair more than your power chair - I would think it would be easier in your power chair. what are the pros and cons? You also talk about your plans to end your life. Right now my husband is refusing a feeding tube. I think there could be a chance of quality of life with it, and he doesn't have to use it but at least it could be an option that he might keep hydrated... have you made a decision on those issues? thanks...
When my arms were stronger, I preferred my manual chair; more agility, more freedom, easier to access. As I have weakened in my arms, the power chair just makes more sense. But I can't use my PWC when I want to go out in my truck, at least not without someone to load it in the back for me.
Let your husband make his own decision, and support him in that decision. This is a tough enough illness without fighting over it with someone you love. Some find quality of life with intervention, others come to despise it. I will not use a feeding tube, or a vent. I want nature to take it's course. I suspect that is how he feels too.
Elizabeth Feltham16 August 2016 at 18:44
Do you use antidepressants? Yes, for depression and for FTD
Would you consider mechanical intubation, or stop at BIPAP, or neither? No. When I'm done, I'm done.
Why did you and your wife divorce? Irreconcilable differences. Too many to mention.
Is there ANY chance you and Katherine can reconcile? Yes
Is there any decent seafood to be had in Calgary? Perhaps in one or two places, but not many and none which I would care to recommend.
Do you own a cowboy hat? No
Have you tried any alternate therapies like hypnotherapy? No. I do what my medical team says. They are trained, experienced, and fully up to date with the current research.
Have you tried following the Lunasin Duke protocol, or the Deanna Protocol? No. My medical team has not recommended it.
Have you been to Drumheller? Yes, several times. Love it.
What is your favourite cut of beef? Cow. Oh, wait. Prime Rib or a really thick Rib Steak.
Boxers, briefs, or commando? Boxers unless commando is called for.
Tara17 August 2016 at 17:40
I'd like to know more about your children.
I intentionally don't say much about my children in this blog, out of respect for their privacy. I will ask them what they think about me saying more about them. It's up to them.
TNA17 August 2016 at 20:06
Where r u going for your next vacation?
I doubt there will be another "major" vacation. I'm out of money. In terms of short trips, I hope to get down to Vancouver to see my Mom and Ray, along with my children and grandchildren. That might happen later this summer, or perhaps this fall. I'm also headed to a friends wedding in Saskatoon in October, assuming I can get the money together.
TNA17 August 2016 at 20:08
You have 4 brothers, but you only write about 3. What about the 4th one?
My youngest brother and I do not talk much. I have only spoken with him once or twice since my diagnosis. Nor do we see each other much, only once since diagnosis.
TNA17 August 2016 at 20:10
Keep on blogging... Do other members of your fam write as well? Would love to hear what they have to say about living with or having a family member with als.
My daughter Meaghan is an excellent writing. She has a food blog she updates periodically. The others have creative talents in different directions. I will ask them if they might be willing to write something for the blog now and again. It's up to them.
jo19 August 2016 at 23:28
Do you any medical facility in your area that is knowledgeable on ALS? Are you at all religious ?
I am tremendously fortunate to live in Calgary, AB, one of Canada's leading centers for neurological research and one of Canada's leading centers for the treatment of ALS, such as it is. As to religion, I am not religious, but I do believe in God, just not the way most people do. Click to this post and might help you understand.
TNA20 August 2016 at 00:59
As your
condition progresses, is you family closer to you? Has your ex-wife called you concerned about your health?
My ex-wife has not spoken to me since I was diagnosed, nor have I attempted to speak to her. My family, especially my daughter Kate, has grown much closer to me of late. I am grateful for her and my other children, for my brothers, for my Mom and Ray. My friends have grown closer too.
TNA20 August 2016 at 01:04
Have you paid off your truck?
I worked out a deal with Ford and I now own my truck. I am grateful to Ford Canada for all their help with this. My truck is my lifeline.
Michelle20 August 2016 at 05:52
You have traveled quite a bit.....what is the one place you have visited that is a must see for everyone to vacation ? Mine was the grand canyon. And what would you say is your biggest regret and what would you have changed in your life if anything? Next question is personal....would you consider wearing an adult diaper?
To have a "must see" for everyone assumes everyone is interested in the same things I am interested in. There are amazing places on this planet, like the Grand Canyon, or the coast of BC, or the sands of the Arab desert. There are wonderful buildings, like the London Natural History Museum or the Duomo in Milan. But my favourite place of all was on the back of my sailboat, in the Broughton Archipelago, fishing for salmon. Regrets? I've had a few, but then again too few to mention. I regret returning to a bad marriage for another decade of unhappiness. I would change that if I could. But very little else. I've had a pretty good life, all things considered.
TNA20 August 2016 at 13:17
Sounds like you like to cook. Can you share some of your fave dishes/baked goodies? Who taught you these skills?
I love to cook. I like baking too, but not as much. My favourite dishes? I love to grill up a good steak, or pan fry some chicken. I make a mean Seafood Risotto and Caprese Salad. Lasagna always stands up well in my kitchen. I roast a fine turkey, and lamb too. Plus I love to make Lamb Shank in my slow cooker. As to who taught, my Mom will admit it was not her. I mostly taught myself.
Greg Fusco20 August 2016 at 13:50
If someone wanted to send you somethings in the mail. What address should they use?
Suite 309B - 3719 49th St., Calgary, AB T3A 2E3
No religious materials please. No treatment or cure suggestions please. No solicitations please.
TNA20 August 2016 at 13:56
Do you ever say "why me?'? Do you ever
blame something that may have happened to you in the past that "caused" you to have als?
I often ask, "Why me?" But then I remind myself of how pointless that question is. Nobody knows the answer, and even if we did, it won't make any difference. I don't bother looking for things in my past which might have caused ALS either. My life is like so many others that if we look at what happened to me, then the whole world should have ALS.
Ask Me Anything
Special Note
On Saturday, August 20th, 2016, I would like to do an "Ask Me Anything" blog post. On that day I will respond to any questions asked, regardless of how personal or inane. No matter what you ask, I will answer it as best I can, as honestly as I can. It can be about ALS. It can be about writing. It can be about my personal life. It can be about my career. You can ask me anything.
To pose a question, simply make a comment on this post. This will stay at the top of my blog until August 20th.
Friday, 19 August 2016
Never Again
Last night was what I might call one of those "nights of discovery". I was in my power chair, having been out and about during the day. I had just finished writing my blog when I felt a disturbance in the force, centered somewhere just below my navel. I felt this seething pressure, slowly rising as a single mass within me, warning me of something about to come. I know from experience that when this kind of thing happens, time is of the essences, and farting is verboten.
As all of these thoughts came together in my mind, I suddenly realized I was in my PWC. In order to get onto the toilet, I could not be in my PWC. It's too high. I could, if needed, fall out of the PWC and onto the toilet. But once down there, getting back up would be an impossibility. So I would have to do what I would have to do, and make the transfer to my manual chair.
Quickly I sped to the transfer point. I flung off my seatbelt, adjusted my footpads, rolled up my manual chair and went to put my transfer board in place. Now, putting the transfer board in place requires that I slide it under one cheek of my rear end. That means rolling slightly to the side, creating a gap between said cheeks, and sliding in the board. It also means releasing control over the muscles that were holding in that Death Star which had announced its intent to release itself. Let the games begin!
The cheek movement had the expected effect. I could feel substantial moisture beneath me as I quickly made the transfer and headed for the toilet. Now I had to do another transfer, once again the shift loosening muscles, allowing my body to release the hounds, howling and snarling as they smelled victory. All I could smell was defeat.
Without going into great detail, it was a mess. After finally getting into position and finishing what was left of the semi-liquid mass exodus from my body's nether region, I cleaned myself up. I cleaned my clothes. I cleaned the toilet. I cleaned the floor. And then I turned to flush. It was there I saw it, leering back at me, undigested, laughing at how it had gained its ultimate revenge, it's final destruction of my dignity. It was a Popcorn Twist. I flushed, and as I did so the two words which I shall carry with me forever whispered across my lips. "Never again. Never again."
As all of these thoughts came together in my mind, I suddenly realized I was in my PWC. In order to get onto the toilet, I could not be in my PWC. It's too high. I could, if needed, fall out of the PWC and onto the toilet. But once down there, getting back up would be an impossibility. So I would have to do what I would have to do, and make the transfer to my manual chair.
Quickly I sped to the transfer point. I flung off my seatbelt, adjusted my footpads, rolled up my manual chair and went to put my transfer board in place. Now, putting the transfer board in place requires that I slide it under one cheek of my rear end. That means rolling slightly to the side, creating a gap between said cheeks, and sliding in the board. It also means releasing control over the muscles that were holding in that Death Star which had announced its intent to release itself. Let the games begin!
The cheek movement had the expected effect. I could feel substantial moisture beneath me as I quickly made the transfer and headed for the toilet. Now I had to do another transfer, once again the shift loosening muscles, allowing my body to release the hounds, howling and snarling as they smelled victory. All I could smell was defeat.
Without going into great detail, it was a mess. After finally getting into position and finishing what was left of the semi-liquid mass exodus from my body's nether region, I cleaned myself up. I cleaned my clothes. I cleaned the toilet. I cleaned the floor. And then I turned to flush. It was there I saw it, leering back at me, undigested, laughing at how it had gained its ultimate revenge, it's final destruction of my dignity. It was a Popcorn Twist. I flushed, and as I did so the two words which I shall carry with me forever whispered across my lips. "Never again. Never again."
Thursday, 18 August 2016
Taking It Easy
It's 8:15 PM; a late blog. I didn't mean to do it this way today. It's just how it worked out. In fact I was still in bed at about 3:00 PM, laying there not knowing what to do with myself. It's happening more and more to me these days, that laying in bed is easier than getting up, that getting up must be driven upon me by outside circumstances. Today it was encouragement from a friend and the offer of a Magnum Ice Cream bar if I got up and got out.
I did both, in a hurry. Ice cream is a tremendous lure for me. I rarely turn it down. Getting dressed was done with its usual trials and tribulations. Getting out meant getting into my Power WheelChair, a transfer which I can still do manually, or using the sling in my living room. Today I did a manual transfer; I had a bit more energy. Tonight, when all is said and done, I will more likely use the sling. I won't have a lot of energy left by then.
Getting outside was good for me. I need to get out of my apartment periodically, not just in my truck but out in my PWC, out to feel the sun and wind, to hear the noise of people and traffic, so smell the grass and trees. I need to get out so I don't feel so much a shut-in. It would be very easy for me to withdraw completely indoors, to sit behind my windowpane, watching the world go by, doing nothing, slowly subsiding into emptiness. I don't want that. I want to get outside. So I did that today.
My life is actually very simple these days. I have few appointments, few social engagements. Mostly I sleep a lot, watch Netflix a lot, read a lot. Mostly I am inactive. There are some things I can get to, some things I can do, but in the end a lot of activity just wears me out. So I try to pace myself, try to manage the energy that I use. While there was certainly activity today, most of it was low impact thanks to the PWC. I just have to take it easy. That's my life these days.
I did both, in a hurry. Ice cream is a tremendous lure for me. I rarely turn it down. Getting dressed was done with its usual trials and tribulations. Getting out meant getting into my Power WheelChair, a transfer which I can still do manually, or using the sling in my living room. Today I did a manual transfer; I had a bit more energy. Tonight, when all is said and done, I will more likely use the sling. I won't have a lot of energy left by then.
Getting outside was good for me. I need to get out of my apartment periodically, not just in my truck but out in my PWC, out to feel the sun and wind, to hear the noise of people and traffic, so smell the grass and trees. I need to get out so I don't feel so much a shut-in. It would be very easy for me to withdraw completely indoors, to sit behind my windowpane, watching the world go by, doing nothing, slowly subsiding into emptiness. I don't want that. I want to get outside. So I did that today.
My life is actually very simple these days. I have few appointments, few social engagements. Mostly I sleep a lot, watch Netflix a lot, read a lot. Mostly I am inactive. There are some things I can get to, some things I can do, but in the end a lot of activity just wears me out. So I try to pace myself, try to manage the energy that I use. While there was certainly activity today, most of it was low impact thanks to the PWC. I just have to take it easy. That's my life these days.
Wednesday, 17 August 2016
Twists Of Not Popcorn
Today's blog post is brought to you by the letters "R" for Richard, I" for is, and "S" for stupid. I admit freely and openly that all I am about to describe in the following sentences, or portions thereof, is my own doing, a self-inflicted wound, a crime against myself for which today I am paying the punishment. And by today, I mean since around 4:00 AM this morning.
I will admit that there are areas in my life where I completely lack self-control. Some would say a great many areas. Let them have their foolish opinion and lightly veiled jealousy. I, with a great deal of modesty, suggest that there are just a few areas like this, wherein I enter abandoning behind me all pretense of common sense and self-limitation. Last night I happily galloped, full tilt, into one of those areas. Popcorn Twists.
Last night I was watching a series of documentaries about British commandos during the Second World War. It was fascinating, reminding me of one of my favourite actors, Christopher Lee. In his lifetime he played a great many movie roles, including Count Dukoo in Star Wars, and Sauruman in Lord of the Rings. Peter Jackson, the director of the Lord of the Rings trilogy was trying to tell Christopher Lee what to do when he got stabbed in the back. Christopher Lee replied "Have you any idea what kind of noise happens when somebody's stabbed in the back? Because I do." Besides acting like a badass in movies, he was also a badass commando in the Second World War, charged with hunting down, interrogating, and turning over Nazis to local officials. Apparently it did not end well for some of his captives.
While watching this truly engaging documentary series, I decided to engage in my own battle with a large bag of Popcorn Twists. In my defense, this was not the Family Size bag, but your ordinary, run of the mill large bag of doom. I attacked, opening the bag with Christopher Lee dexterity and power. I dove into my battle, downing those twisted pieces of fatty, popcorn tasting goodness. By the way, there is no actual "popcorn" in popcorn twists. Read the ingredients next time you feel tempted by this fatty funfest. Cornmeal, salt, and vegetable oil. That is all.
I demolished the bag, watched my Netflix series, and to top it all off, had a couple of Rum and Cokes, not too many because I had homecare coming this morning. And then I went to bed, satisfied that I had won the battle of the bag, destroying all those nasty popcorn-less popcorn twists. I slept, my belly bloated with victory. Until about 4:00 AM. That's when the popcorn twists rose from the depths of my belly to fight their denouement. They started with simple gas attacks, moved towards stomach cramping, and made their final attack in a threat to regurgitate themselves from within me.
I slept poorly, bucket beside me. The combination of cornmeal, salt, vegetable oil and sugar from the Coke molded itself into a solidified lump within me, periodically attempting another escape from the prison of my stomach, pushing bile ahead of itself as a warning to all who might resist. When my HCA arrived at 10:30 this morning I wasn't really all that tired, but my belly continued to reflect my poor judgement from the night before.
I went to the toilet... three times. All told I spend almost 45 minutes sitting over the porcelain throne of justice, attempting to expel all that which was within me. I did well, but not well enough. It still hurt. I had my shower and returned to my bedroom where my HCA helped me with powders and ointments, then handed me my clothes. During the motions of dressing, I realized that too much of this would only aide the enemy within me. There would be no exercises today.
My HCA went home. I returned to a prone position where, if needed, I could grab my bucket quickly. I remained thus prone until just a few moments ago, when I needed to use the bathroom once again. I am now sitting in my wheelchair, my stomach still punishing me for those damned salty goodies called Popcorn Twists which have no popcorn in them. I will live. I will fight another day. However I doubt I will engage those twists in battle again. I have defeated that demon, bested that beast. All I have to do is get through the rest of the day without puking.
I will admit that there are areas in my life where I completely lack self-control. Some would say a great many areas. Let them have their foolish opinion and lightly veiled jealousy. I, with a great deal of modesty, suggest that there are just a few areas like this, wherein I enter abandoning behind me all pretense of common sense and self-limitation. Last night I happily galloped, full tilt, into one of those areas. Popcorn Twists.
Last night I was watching a series of documentaries about British commandos during the Second World War. It was fascinating, reminding me of one of my favourite actors, Christopher Lee. In his lifetime he played a great many movie roles, including Count Dukoo in Star Wars, and Sauruman in Lord of the Rings. Peter Jackson, the director of the Lord of the Rings trilogy was trying to tell Christopher Lee what to do when he got stabbed in the back. Christopher Lee replied "Have you any idea what kind of noise happens when somebody's stabbed in the back? Because I do." Besides acting like a badass in movies, he was also a badass commando in the Second World War, charged with hunting down, interrogating, and turning over Nazis to local officials. Apparently it did not end well for some of his captives.
While watching this truly engaging documentary series, I decided to engage in my own battle with a large bag of Popcorn Twists. In my defense, this was not the Family Size bag, but your ordinary, run of the mill large bag of doom. I attacked, opening the bag with Christopher Lee dexterity and power. I dove into my battle, downing those twisted pieces of fatty, popcorn tasting goodness. By the way, there is no actual "popcorn" in popcorn twists. Read the ingredients next time you feel tempted by this fatty funfest. Cornmeal, salt, and vegetable oil. That is all.
I demolished the bag, watched my Netflix series, and to top it all off, had a couple of Rum and Cokes, not too many because I had homecare coming this morning. And then I went to bed, satisfied that I had won the battle of the bag, destroying all those nasty popcorn-less popcorn twists. I slept, my belly bloated with victory. Until about 4:00 AM. That's when the popcorn twists rose from the depths of my belly to fight their denouement. They started with simple gas attacks, moved towards stomach cramping, and made their final attack in a threat to regurgitate themselves from within me.
I slept poorly, bucket beside me. The combination of cornmeal, salt, vegetable oil and sugar from the Coke molded itself into a solidified lump within me, periodically attempting another escape from the prison of my stomach, pushing bile ahead of itself as a warning to all who might resist. When my HCA arrived at 10:30 this morning I wasn't really all that tired, but my belly continued to reflect my poor judgement from the night before.
I went to the toilet... three times. All told I spend almost 45 minutes sitting over the porcelain throne of justice, attempting to expel all that which was within me. I did well, but not well enough. It still hurt. I had my shower and returned to my bedroom where my HCA helped me with powders and ointments, then handed me my clothes. During the motions of dressing, I realized that too much of this would only aide the enemy within me. There would be no exercises today.
My HCA went home. I returned to a prone position where, if needed, I could grab my bucket quickly. I remained thus prone until just a few moments ago, when I needed to use the bathroom once again. I am now sitting in my wheelchair, my stomach still punishing me for those damned salty goodies called Popcorn Twists which have no popcorn in them. I will live. I will fight another day. However I doubt I will engage those twists in battle again. I have defeated that demon, bested that beast. All I have to do is get through the rest of the day without puking.
Tuesday, 16 August 2016
The Long, Long Trail
I had an adventure yesterday, some of it planned, some of it unplanned, all of it interesting. I took my power wheelchair to trivia last night, a voyage across the city using the chair and local transit. I did this for two reasons. First, I needed to get outside. Going to trivia in my truck is not getting outside, per se. I go to the garage. I get in the truck and drive to trivia. I park next to the pub. I go in. Not a lot of nature time. Second, I know that soon enough the PWC will be my main transport; I am not sure how long I can go on driving, both in terms of cost and in terms of ability. So I am practicing, practicing longer trips, diverse transport, different routes for getting around.
The plan was for me to leave home at 6:00 PM, allowing 90 minutes for the trip in total. The first leg was to power over to the Brentwood C-Train station, about a 20 minute run. Then I was going to catch the C-Train down to City Hall, also about a 20 minute trip. Finally I was going to roll along the Riverside Trail to the Swan's Pub in Inglewood, a last leg of 20 minutes. Planned run time was 60 minutes; I allowed another 30 minutes for "just in case". I needed it.
I started out in great form, on time and on target. However I needed to stop at Safeway to pick up a prescription that was supposed to be ready, emphasis on supposed. I crossed the street, went into the store straight to the pharmacy and discovered it wasn't ready yet. It would be another 10 minutes. No problem, I had time. I waited and got my drugs.
Then I headed for Brentwood. No trouble here. The weather was good, the sidewalks were mostly clear. I arrived in 20 minutes, just as planned. I took the outside elevator up to the station and crossed the tracks on the elevated walkway. I went into the station and powered right up to the inside elevator. Which was closed for repairs. No notice. No alternative method. I drives me nuts that able bodied people get two staircases, both with up and down pathways, while handicapped people get one elevator, which, when not working, screws us completely.
I left the Brentwood station and headed for the Banff Trail Station, completely forgetting that the University station was closer. I was angry, tweeting my frustration to Calgary Transit. I was moving, wanting to get where I was going. I had tactics, but not strategy. Although I think I might have saved about 10 minutes by going to University instead of Banff Trail. Oh well. I made it to the station and got aboard.
The trip downtown was uneventful, although I began to look at the time required to roll along the Riverside versus what it might take to get the bus a few blocks away. It was faster to take the bus, so I did. Also uneventful. And I had fun at Trivia, our team once again coming in second. We have been in second place for several weeks in a row. This is getting expensive, this not winning.
On the way home I did the Riverside and caught the C-Train without incident. Instead of getting off at Brentwood, I got off at Dalhousie. Once again, University would have been quicker, but I wasn't thinking that well. From the Dalhousie C-Train station it's about 20 minutes through the very pleasant Varsity neighbourhood to my apartment. It's an older area, with wonderful homes and terrible sidewalks, many of which don't have ramps. I stayed on the road, avoiding getting stuck, which actually happened once, causing me to go a block and a half out of my way just to get off the sidewalk. Hence my road decision.
I got home eventually, only about an hour after leaving Swan's. So my trip plan was on target. I used up all my "what if" time, and I still had a great time with friends at trivia. I'll probably do it again, but this time I will tweet Calgary Transit to see which elevators are not working. It's important.
The plan was for me to leave home at 6:00 PM, allowing 90 minutes for the trip in total. The first leg was to power over to the Brentwood C-Train station, about a 20 minute run. Then I was going to catch the C-Train down to City Hall, also about a 20 minute trip. Finally I was going to roll along the Riverside Trail to the Swan's Pub in Inglewood, a last leg of 20 minutes. Planned run time was 60 minutes; I allowed another 30 minutes for "just in case". I needed it.
I started out in great form, on time and on target. However I needed to stop at Safeway to pick up a prescription that was supposed to be ready, emphasis on supposed. I crossed the street, went into the store straight to the pharmacy and discovered it wasn't ready yet. It would be another 10 minutes. No problem, I had time. I waited and got my drugs.
Then I headed for Brentwood. No trouble here. The weather was good, the sidewalks were mostly clear. I arrived in 20 minutes, just as planned. I took the outside elevator up to the station and crossed the tracks on the elevated walkway. I went into the station and powered right up to the inside elevator. Which was closed for repairs. No notice. No alternative method. I drives me nuts that able bodied people get two staircases, both with up and down pathways, while handicapped people get one elevator, which, when not working, screws us completely.
I left the Brentwood station and headed for the Banff Trail Station, completely forgetting that the University station was closer. I was angry, tweeting my frustration to Calgary Transit. I was moving, wanting to get where I was going. I had tactics, but not strategy. Although I think I might have saved about 10 minutes by going to University instead of Banff Trail. Oh well. I made it to the station and got aboard.
The trip downtown was uneventful, although I began to look at the time required to roll along the Riverside versus what it might take to get the bus a few blocks away. It was faster to take the bus, so I did. Also uneventful. And I had fun at Trivia, our team once again coming in second. We have been in second place for several weeks in a row. This is getting expensive, this not winning.
On the way home I did the Riverside and caught the C-Train without incident. Instead of getting off at Brentwood, I got off at Dalhousie. Once again, University would have been quicker, but I wasn't thinking that well. From the Dalhousie C-Train station it's about 20 minutes through the very pleasant Varsity neighbourhood to my apartment. It's an older area, with wonderful homes and terrible sidewalks, many of which don't have ramps. I stayed on the road, avoiding getting stuck, which actually happened once, causing me to go a block and a half out of my way just to get off the sidewalk. Hence my road decision.
I got home eventually, only about an hour after leaving Swan's. So my trip plan was on target. I used up all my "what if" time, and I still had a great time with friends at trivia. I'll probably do it again, but this time I will tweet Calgary Transit to see which elevators are not working. It's important.
Monday, 15 August 2016
Leave My Diet Alone!
Right from the beginning of my diagnosis, I was told that heavier people survive longer with ALS. While the doctors could not express a comprehensive reason why, there were suggestions that it might have to do with ketones and mitochondria, or it might have to do with body reserves when you could no longer eat. All we know for sure is that being fat is a predictor of longer survival times. It's not always true, but it's true often enough to be statistically significant.
I get a lot of crap from people who tell me I am not eating properly. They want me to eat more vegetables. They want me to have a better diet. When I went to my first ALS clinic I weighed 215 pounds. The medical team suggested I gain weight. I took them at their word and very quickly went from 215 pounds to 240 pounds. It only took about 3 months to put on that weight. The next big leap came last year on the road, where I went from 245 pounds to 260 pounds.
That's when people around me started to make "suggestions". The suggestion was that if I lose a bit of weight, it would be easier for me to make my transfers, especially as my arms got weaker. The suggestion was that the body fat around my waist just wasn't good for me, and losing 10 or 20 pounds might not be such a bad idea. The suggestion was made that my diet should have less meat, more veggies, fewer carbohydrates, more fibre.
The problem is that NOBODY gets it. Everything you think is right for your health is wrong for mine. There are any number of ALS related health and exercise studies, studies like this one from the Harvard Gazette which clearly states that PALS on a high protein, high fat, high carbohydrate diet live longer, on average, that those who eat to maintain weight and especially those who lose weight, regardless of reason. Other studies have found links between Ketogenic Diets and improved survival rates in mouse models.
The doctor doing the Harvard study concludes his article by saying "I’m optimistic that interventions designed to maintain or increase weight could be even more effective if started before patients have lost a significant amount of weight." That's what I did. My doctor got me on a weight gain diet immediately. He didn't have to tell me how; I knew what to do. I gained weight. My progression slowed.
Maybe I should go on a diet now. Maybe I should lose some weight. Maybe I should eat less meat, less rice, less pasta. Maybe it will help me die sooner. I'm beginning to think that's not such a bad idea, dying sooner. I'll tell you though, given that I love food and wine, it's not likely my preferred way to go. It's one way, but I doubt it will be my way. And once I can no longer eat, it won't matter anyway. I'll go quickly then.
I get a lot of crap from people who tell me I am not eating properly. They want me to eat more vegetables. They want me to have a better diet. When I went to my first ALS clinic I weighed 215 pounds. The medical team suggested I gain weight. I took them at their word and very quickly went from 215 pounds to 240 pounds. It only took about 3 months to put on that weight. The next big leap came last year on the road, where I went from 245 pounds to 260 pounds.
That's when people around me started to make "suggestions". The suggestion was that if I lose a bit of weight, it would be easier for me to make my transfers, especially as my arms got weaker. The suggestion was that the body fat around my waist just wasn't good for me, and losing 10 or 20 pounds might not be such a bad idea. The suggestion was made that my diet should have less meat, more veggies, fewer carbohydrates, more fibre.
The problem is that NOBODY gets it. Everything you think is right for your health is wrong for mine. There are any number of ALS related health and exercise studies, studies like this one from the Harvard Gazette which clearly states that PALS on a high protein, high fat, high carbohydrate diet live longer, on average, that those who eat to maintain weight and especially those who lose weight, regardless of reason. Other studies have found links between Ketogenic Diets and improved survival rates in mouse models.
The doctor doing the Harvard study concludes his article by saying "I’m optimistic that interventions designed to maintain or increase weight could be even more effective if started before patients have lost a significant amount of weight." That's what I did. My doctor got me on a weight gain diet immediately. He didn't have to tell me how; I knew what to do. I gained weight. My progression slowed.
Maybe I should go on a diet now. Maybe I should lose some weight. Maybe I should eat less meat, less rice, less pasta. Maybe it will help me die sooner. I'm beginning to think that's not such a bad idea, dying sooner. I'll tell you though, given that I love food and wine, it's not likely my preferred way to go. It's one way, but I doubt it will be my way. And once I can no longer eat, it won't matter anyway. I'll go quickly then.
Sunday, 14 August 2016
Energy Loss
I'm up. Barely. It's a close run thing today, me getting out of bed. I am exhausted, really tired. This is one of the biggest changes I have noticed in the last year or two, my energy level. I just don't have one anymore. Pete Seeger did a song where he lamented; "How do I know my youth is all spent? My get-up-and-go has got up and went!" I feel that, like all kinds of others my age, only it's worse, more dramatic a loss.
I used to have lots of energy, even in my first couple of years with ALS. I could go on day after day, seemingly with only limited sleep. I could do social engagements five or six nights in a row, and still have energy for life at home. Now, alas, it is no longer so. I went out to watch meteors on Friday night, went to a BBQ party yesterday afternoon and evening, and today I can barely function. My eyes are screaming at me to close, even as I sit here and type.
It's tragic to think that my favourite activity of late has become sleeping. I'm like a very old man who simply wants nothing more than to rest, dozing his days away in bed. Yet even so, here I am, up, typing, soon to dress and do at least something with what remains of my afternoon. My brain does not believe that my body can be this tired, this easily worn out. My brain and body have this clear disconnect, this plain disagreement on what I can and should be able to do. My body is winning.
It's much more than the larger picture. While at the BBQ yesterday, we were playing charades. While this is admittedly not my favourite game, I was in. I was playing. I lasted for about two rounds, at which point my mind was in but my body was out. I lost the ability to focus. My breathing got difficult. My body did not want to move. After about 10 minutes of low impact activity, I was done.
I did recover. It took about a half an hour. By this time the gang wanted to play a different game, one where using your mind and wit was more important. I did really well with that, participating, engaged, talking, laughing. The only thing to wear out was my voice; it's not as strong as it used to be. I did fine, as long as my body wasn't involved.
So both on the large scale, the scale of daily life, and the small scale, the scale of a game of charades, energy is my issue. It's as much a part of the losses of ALS as is the wheelchair, the arm strength, the core muscle loss. I need to rest more. So I cancelled out of the picnic I was going to this afternoon. I just can't do it anymore.
I used to have lots of energy, even in my first couple of years with ALS. I could go on day after day, seemingly with only limited sleep. I could do social engagements five or six nights in a row, and still have energy for life at home. Now, alas, it is no longer so. I went out to watch meteors on Friday night, went to a BBQ party yesterday afternoon and evening, and today I can barely function. My eyes are screaming at me to close, even as I sit here and type.
It's tragic to think that my favourite activity of late has become sleeping. I'm like a very old man who simply wants nothing more than to rest, dozing his days away in bed. Yet even so, here I am, up, typing, soon to dress and do at least something with what remains of my afternoon. My brain does not believe that my body can be this tired, this easily worn out. My brain and body have this clear disconnect, this plain disagreement on what I can and should be able to do. My body is winning.
It's much more than the larger picture. While at the BBQ yesterday, we were playing charades. While this is admittedly not my favourite game, I was in. I was playing. I lasted for about two rounds, at which point my mind was in but my body was out. I lost the ability to focus. My breathing got difficult. My body did not want to move. After about 10 minutes of low impact activity, I was done.
I did recover. It took about a half an hour. By this time the gang wanted to play a different game, one where using your mind and wit was more important. I did really well with that, participating, engaged, talking, laughing. The only thing to wear out was my voice; it's not as strong as it used to be. I did fine, as long as my body wasn't involved.
So both on the large scale, the scale of daily life, and the small scale, the scale of a game of charades, energy is my issue. It's as much a part of the losses of ALS as is the wheelchair, the arm strength, the core muscle loss. I need to rest more. So I cancelled out of the picnic I was going to this afternoon. I just can't do it anymore.
Saturday, 13 August 2016
Sometimes
I went out last night. Quite literally, it was well into the night when I went out, out to see the Perseid meteor shower. I went with some friends, all of us gathering together at a friend's place first, then driving out to an old church in the countryside. We got to our meteor watching spot at about 11:30 and, after about a half an hour letting our eyes adjust to the darkness, we set about to watching the skies.
Most were in chairs, I in my wheelchair, but a lucky two were able to lay on the ground and look straight up. I so much wanted to do this, to escape my chair and lay back on the ground like I used to do. I can remember, both as a kid and as an adult, laying backwards, looking upwards, watching shooting stars and satellites cross the sky.
I imagined myself last night laying on the ground, blanket beneath me, blanket atop me, snug and warm against the cool night air, coyotes yipping in the distance, a lonesome train whistle blowing far off, the breeze rustling the leaves and branches somewhere off in the darkness. I imagined being able to get up, sit up, get down, and even get back up again. It's been a few years now since I was able to do these things. I remember them. I ache to have them back again.
Still, even from my wheelchair, sitting as others were sitting, it was a nice light show. There weren't the numbers of plummeting meteors as promised by the media, but there were enough to make it interesting. Every once in a while a big one would leave a streak across the sky. Once or twice that streak appeared coloured, not quite a rainbow but with distinct red and blue lines.
We sat, we watched, oohing and awing in delight with the good ones, remarking on the passage of the smaller ones. We chatted about meaningless things; what we would do if we won the lottery, how rude it was of the other people to drive in slowly with their bright headlights shining on us, the sounds we heard, life in general. It was a pleasant, easy night, late enough to make me tired for real today, interesting and enjoyable enough to make me want to do it again.
Sometimes you get lucky. Sometimes you get wonderful evenings with friends. Sometimes you get to see a shooting star. Sometimes you get to lay in the grass and watch the sky. Sometimes.
Friday, 12 August 2016
Faster Is Better
I don't always say what I truly feel in this blog. The truth is that I often dampen it, soften it, so that those close to me don't despair, are not put in pain. There are things I feel, things which are deep within me, which just seem too dangerous to say out loud, to likely to provoke protest or denial or dismissal.
This kind of thing happens often enough already. This whole discussion about slow progression, so many people saying it's terrific that things are going slowly, that I have more time to live, more time to do the things I want to do. This slow progression is not a blessing. It's a curse. It means I have longer to live with the terrifying thoughts about what will happen to me, with the pain of daily life, with the slow incrementalism which I know can only end in complete debilitation and death. I don't get to do more; I am forced to do less. I don't have more time to live; I'm taking longer to die. I am being tortured to death. Almost universally within the ALS community, fast is considered the blessing and slow is considered the curse.
My friend Sarah Coglianese wrote about this in her blog yesterday, wrote about how her slow progression has made her feel. I want every one of you read it, and remember as you do that this is a young woman with a beautiful daughter and loving husband. Read it, and remember that no matter how many reasons you have to live, eventually your quality of life gets to a point where you can't go on. Then, some day when it's all just too much, I assure you, you will die.
I feel what she feels. She writes what I wish I could say more often. I am in a place where, like Sarah, I am surrounded by death, surrounded by people who are becoming more and more crippled each and every day. This is why I attend so few of the local ALS support group meetings. I don't need to be reminded of what is happening, and what will happen to me. What Sarah says is truth. Even her last paragraph, her apologia, is tinged with her painful reality, and her reality is my reality.
I don't want to die, but I will. I want to live, but I cannot even yet while I breath. This is a shitty, horrible monstrosity of a disease. Slow is no blessing to me. I wish I had died on schedule, or even a bit sooner. It would have been so much easier. There would have been so much less pain, so much less struggle, so much less of this feeling of failure and burdensomeness, so much much less of having to ask for others and depending on their help. And a lot fewer death announcements in my Facebook feed.
This kind of thing happens often enough already. This whole discussion about slow progression, so many people saying it's terrific that things are going slowly, that I have more time to live, more time to do the things I want to do. This slow progression is not a blessing. It's a curse. It means I have longer to live with the terrifying thoughts about what will happen to me, with the pain of daily life, with the slow incrementalism which I know can only end in complete debilitation and death. I don't get to do more; I am forced to do less. I don't have more time to live; I'm taking longer to die. I am being tortured to death. Almost universally within the ALS community, fast is considered the blessing and slow is considered the curse.
My friend Sarah Coglianese wrote about this in her blog yesterday, wrote about how her slow progression has made her feel. I want every one of you read it, and remember as you do that this is a young woman with a beautiful daughter and loving husband. Read it, and remember that no matter how many reasons you have to live, eventually your quality of life gets to a point where you can't go on. Then, some day when it's all just too much, I assure you, you will die.
I feel what she feels. She writes what I wish I could say more often. I am in a place where, like Sarah, I am surrounded by death, surrounded by people who are becoming more and more crippled each and every day. This is why I attend so few of the local ALS support group meetings. I don't need to be reminded of what is happening, and what will happen to me. What Sarah says is truth. Even her last paragraph, her apologia, is tinged with her painful reality, and her reality is my reality.
I don't want to die, but I will. I want to live, but I cannot even yet while I breath. This is a shitty, horrible monstrosity of a disease. Slow is no blessing to me. I wish I had died on schedule, or even a bit sooner. It would have been so much easier. There would have been so much less pain, so much less struggle, so much less of this feeling of failure and burdensomeness, so much much less of having to ask for others and depending on their help. And a lot fewer death announcements in my Facebook feed.
Thursday, 11 August 2016
I Stayed In Bed All Day
It's almost 11:00 PM here in Calgary, but it is still Thursday so I am confident that this constitutes my Thursday blog entry. If you are interested, this is blog entry #1352. I've most certainly beat Ann of a Thousand Days. I just got out of bed a few minutes ago, the first time I've gotten out of bed today. I stayed in bed all day.
It started out like any other day. I woke up near noon after my requisite 10 to 12 hours of sleep. As I sat up I said to myself, "I don't want to do this." And this time, I didn't. For the first time since the beginning of all this nonsense, I gave it to the feeling that getting out of bed was just too hard, too much to do. I fell back down and closed my eyes. I thought about things. I had no plans for today. Nobody was coming to visit, no guests for dinner. There were no wine making tasks, no shopping needs, no social engagements. There was nothing in my day. So I stayed in bed.
After a while, I thought again about getting up, yet still that exhaustion was upon me. I had slept more, longer, and still I was tired. Of course this is normal with ALS. I am constantly tired. The exhaustion of this illness means I am never refreshed, never "not tired". So again, I just stayed in bed. Nothing changed. Nothing happened.
As the day wore on, the sun rose high and worked its way across to the western horizon. The city crew worked on paving the street out front of my apartment. Buses came and went, engorging and disgorging as they do. Every once in a while the departing passengers would be loud, shouting, laughing, living their lives as they went. The traffic rose in noise and volume, then slowly, as the sun setting in the west, quieted again, settling into peace, only the odd bus making the rain squish beneath its tires.
The world went on while I lay in my pseudo-death, drifting in from sleep to awakeness, moving from slumber to alert, every few hours taking a sip of water or going pee in my jug. I checked Facebook now and again, texted my daughter to move our Skype appointment to tomorrow from today, read the news on my phone. I had all I needed. I was not hungry, in fact I am still not hungry. Apparently not moving out of bed all day is a good appetite suppressant. It seems backwards, but everything about this bloody disease is backwards. Perhaps it's because I am rarely truly hungry, and surprised when that happens.
Finally, a few minutes ago, the two most persistent things in my life convinced me to get out of bed, at least for a while. I have to use the toilet. It's not urgent. I could just leave it until the morning, but urgent events in the middle of the night usually turn out badly for me. I could trust a Zopiclone to shut down my bowels, but not completely. Caution is the watchword here. Secondly, I wanted to write in my blog for today, for post number 1352.
Even now, even this getting out of bed, I am tired, ready to go back. I had no other reasons for getting up. This is it. Going to the toilet, and writing in my blog; it's a hell of a life.
It started out like any other day. I woke up near noon after my requisite 10 to 12 hours of sleep. As I sat up I said to myself, "I don't want to do this." And this time, I didn't. For the first time since the beginning of all this nonsense, I gave it to the feeling that getting out of bed was just too hard, too much to do. I fell back down and closed my eyes. I thought about things. I had no plans for today. Nobody was coming to visit, no guests for dinner. There were no wine making tasks, no shopping needs, no social engagements. There was nothing in my day. So I stayed in bed.
After a while, I thought again about getting up, yet still that exhaustion was upon me. I had slept more, longer, and still I was tired. Of course this is normal with ALS. I am constantly tired. The exhaustion of this illness means I am never refreshed, never "not tired". So again, I just stayed in bed. Nothing changed. Nothing happened.
As the day wore on, the sun rose high and worked its way across to the western horizon. The city crew worked on paving the street out front of my apartment. Buses came and went, engorging and disgorging as they do. Every once in a while the departing passengers would be loud, shouting, laughing, living their lives as they went. The traffic rose in noise and volume, then slowly, as the sun setting in the west, quieted again, settling into peace, only the odd bus making the rain squish beneath its tires.
The world went on while I lay in my pseudo-death, drifting in from sleep to awakeness, moving from slumber to alert, every few hours taking a sip of water or going pee in my jug. I checked Facebook now and again, texted my daughter to move our Skype appointment to tomorrow from today, read the news on my phone. I had all I needed. I was not hungry, in fact I am still not hungry. Apparently not moving out of bed all day is a good appetite suppressant. It seems backwards, but everything about this bloody disease is backwards. Perhaps it's because I am rarely truly hungry, and surprised when that happens.
Finally, a few minutes ago, the two most persistent things in my life convinced me to get out of bed, at least for a while. I have to use the toilet. It's not urgent. I could just leave it until the morning, but urgent events in the middle of the night usually turn out badly for me. I could trust a Zopiclone to shut down my bowels, but not completely. Caution is the watchword here. Secondly, I wanted to write in my blog for today, for post number 1352.
Even now, even this getting out of bed, I am tired, ready to go back. I had no other reasons for getting up. This is it. Going to the toilet, and writing in my blog; it's a hell of a life.
Wednesday, 10 August 2016
I Don't Wanna Write
Maybe later.
It's later. I am a bit more functional. The sleeping pill I took last night has finally left me. Some days those Zopliclone seem to do nothing, other days I wake up almost unable to function. It's just the way they work. It's not the pills that are random, it's my body.
Somedays I think that if it wasn't for bad luck, I wouldn't have any luck at all. A few months after my diagnosis, my son was with me and he said "You should have bought a lottery ticket that day." He was thinking about the odds of getting ALS. What he didn't know that the odds of getting ALS are far higher than the odds of winning the lotterly. The odds of a single ticket winning the Lotto 6/49 here in Canada are about 1:14,000,000. Odds of getting ALS vary, but the run between 2 and 5 out of every 100,000 people depending on which study you look at and where the study was completed.
Nonetheless, I took his advice the next time I went to the ALS Clinic. It was "Hospital Lottery" time, and given my situation I thought this might be a good omen. So I bought the full battery of tickets, $300 worth. I won nothing, nothing at all, not even a miniscule consolation prize. No luck at all.
That was a few years ago. The other day, feeling foolish and willing to prove once again that lotteries are just a tax on people who can't do math, I did the whole lottery thing again. Only this time my finances are significantly more constrained, so I spent the vast sum of $10 on two tickets, one for Lotto Max and one for 6/49. The 6/49 was drawn that night. I didn't get a single number, not one.
The Lotto Max is on Friday, I have that ticket. The odds of winning are around 1:28.000.000; that's twice as worse as the 6/49. I can't even imagine myself winning, not like my Dad could. He used to say that he bought his tickets on Monday so he could spend the week dreaming about what he would do if he won. He saw it as entertainment. I'm not built that way. I think I could probably have had more fun spending the $5 on beer. But then again, with my luck, I'd be arrested for DUI on the way home from the pub.
It's later. I am a bit more functional. The sleeping pill I took last night has finally left me. Some days those Zopliclone seem to do nothing, other days I wake up almost unable to function. It's just the way they work. It's not the pills that are random, it's my body.
Somedays I think that if it wasn't for bad luck, I wouldn't have any luck at all. A few months after my diagnosis, my son was with me and he said "You should have bought a lottery ticket that day." He was thinking about the odds of getting ALS. What he didn't know that the odds of getting ALS are far higher than the odds of winning the lotterly. The odds of a single ticket winning the Lotto 6/49 here in Canada are about 1:14,000,000. Odds of getting ALS vary, but the run between 2 and 5 out of every 100,000 people depending on which study you look at and where the study was completed.
Nonetheless, I took his advice the next time I went to the ALS Clinic. It was "Hospital Lottery" time, and given my situation I thought this might be a good omen. So I bought the full battery of tickets, $300 worth. I won nothing, nothing at all, not even a miniscule consolation prize. No luck at all.
That was a few years ago. The other day, feeling foolish and willing to prove once again that lotteries are just a tax on people who can't do math, I did the whole lottery thing again. Only this time my finances are significantly more constrained, so I spent the vast sum of $10 on two tickets, one for Lotto Max and one for 6/49. The 6/49 was drawn that night. I didn't get a single number, not one.
The Lotto Max is on Friday, I have that ticket. The odds of winning are around 1:28.000.000; that's twice as worse as the 6/49. I can't even imagine myself winning, not like my Dad could. He used to say that he bought his tickets on Monday so he could spend the week dreaming about what he would do if he won. He saw it as entertainment. I'm not built that way. I think I could probably have had more fun spending the $5 on beer. But then again, with my luck, I'd be arrested for DUI on the way home from the pub.
Tuesday, 9 August 2016
I'm Looking For Work
I started looking for work yesterday, something I could do from home, something I could do on my own schedule, something I could do without too much pressure. My first thought was to look at writing jobs, in particular report writing and editing. There actually is work like that, much of it done from home. I thought this kind of thing would be good for me.
Before going further, I should explain why I left work three and a half years ago. I was diagnosed in November, in the midst of a fairly rapid slide, losing my legs. This was a fairly traumatic time, but I got over it. Nonetheless it affected my work, and the people working with me. There was a lot of emotion involved, along with a lot of stress. I began to notice the impact of all of this on my ability to work, my ability to do good work, and how I impacted my co-workers.
After considering all the factors, I submitted my resignation. I simply did not feel my employer was getting good value from my work, nor did I believe it was helping me all that much. At the time my condition was deteriorating quickly; I was losing about one FRS point a month, right on track with an expected lifetime of 36 months. I planned a budget with an expected expiry of fall of 2015, on target with my expiry date. I got rid of most of the stress in my life, especially once I finally settled my divorce, and went on to live as much and as best I could in the time I had left.
Now, well past my expiry date, I find myself running consistently about $400 - $600 short each month. I've been making up this shortfall by not making my condo fee payments, by running up my credit cards, and by begging from friends and family. It's not elegant, nor sustainable. So I started looking for something where I could use my writing skills, my career experience, and technology skills, my PM skills, and my life experience.
I was fine while reading the posted requirements for some of these jobs, then I started noticing some of the statements in the details. "Must be able to work under pressure." "Must be able to meet tight timelines." All of a sudden, for the first time in a great many months, I started to have a panic attack. My stomach got all queasy. My hands started shaking, even worse than normal. My mind started racing with thoughts of conflict and failure. I came up with a thousand reasons why I couldn't do this.
So I set it aside, after all of 15 minutes of reading job ads. I'll try again today; maybe the panic attack will be less severe. I'll read more job ads. I'll look at other opportunities. My only problem is dealing with the stress. I feel confident I can conquer it. I just don't know what it will do to my health. That scares me a bit. Still, there are a lot of people who put their health at risk for their work. Why should I be any different? I need the money, just like them.
Before going further, I should explain why I left work three and a half years ago. I was diagnosed in November, in the midst of a fairly rapid slide, losing my legs. This was a fairly traumatic time, but I got over it. Nonetheless it affected my work, and the people working with me. There was a lot of emotion involved, along with a lot of stress. I began to notice the impact of all of this on my ability to work, my ability to do good work, and how I impacted my co-workers.
After considering all the factors, I submitted my resignation. I simply did not feel my employer was getting good value from my work, nor did I believe it was helping me all that much. At the time my condition was deteriorating quickly; I was losing about one FRS point a month, right on track with an expected lifetime of 36 months. I planned a budget with an expected expiry of fall of 2015, on target with my expiry date. I got rid of most of the stress in my life, especially once I finally settled my divorce, and went on to live as much and as best I could in the time I had left.
Now, well past my expiry date, I find myself running consistently about $400 - $600 short each month. I've been making up this shortfall by not making my condo fee payments, by running up my credit cards, and by begging from friends and family. It's not elegant, nor sustainable. So I started looking for something where I could use my writing skills, my career experience, and technology skills, my PM skills, and my life experience.
I was fine while reading the posted requirements for some of these jobs, then I started noticing some of the statements in the details. "Must be able to work under pressure." "Must be able to meet tight timelines." All of a sudden, for the first time in a great many months, I started to have a panic attack. My stomach got all queasy. My hands started shaking, even worse than normal. My mind started racing with thoughts of conflict and failure. I came up with a thousand reasons why I couldn't do this.
So I set it aside, after all of 15 minutes of reading job ads. I'll try again today; maybe the panic attack will be less severe. I'll read more job ads. I'll look at other opportunities. My only problem is dealing with the stress. I feel confident I can conquer it. I just don't know what it will do to my health. That scares me a bit. Still, there are a lot of people who put their health at risk for their work. Why should I be any different? I need the money, just like them.
Monday, 8 August 2016
PWC or Truck?
I'm thinking of doing some errands today, and then heading off to Trivia afterwards, all in the arms of my power wheelchair, or with my truck. This is not a simple choice. It's a toss up between the PWC and my truck. With my PWC, I can't go as far, or as fast. With my truck, I have to get in and out, transfers that are challenging for me when I am solo.
I am increasingly using my PWC for excursions, going as far as I can with battery and transit. I am at the point where "quick errands", while slower with the chair, are easier when I don't have to transfer in and out of the truck. Given the time it takes to transfer, get my manual chair into the truck, get buckled in, then go, sometimes it's even faster to use the PWC over the truck.
The most significant issue with the PWC is that I am exposed to weather. Given the way things have been going with thunderstorms and winds in Calgary lately, this is a very real concern. I don't mind a little rain, but on Saturday I was over at the mall across the street when the heavens opened up. I tried braving the rain, but the mere crossing of the parking lot road saw me so soaked that I knew I needed to head back. I went into Starbucks, had a coffee, and waited for the squall to pass.
That's not to say I would have been "golden" with the truck. The transfer into the truck takes a few minutes. Doing that transfer in the pouring rain is equally challenging. On the other hand, there is underground parking at Market Mall; more than once I have saved myself from weather by parking downstairs both here at home and across the street. But then again, transfers are difficult, especially when I am alone.
What I think I might do today is split the difference. I will use my PWC to do my errands. Then I will come home and use my truck to go to Trivia. Or vice versa. Either way, in all ways, I am spending more time in that chair. It's the way things will go, eventually. At some point I won't have a choice, so learning to do it now is better that being forced into it.
I am increasingly using my PWC for excursions, going as far as I can with battery and transit. I am at the point where "quick errands", while slower with the chair, are easier when I don't have to transfer in and out of the truck. Given the time it takes to transfer, get my manual chair into the truck, get buckled in, then go, sometimes it's even faster to use the PWC over the truck.
The most significant issue with the PWC is that I am exposed to weather. Given the way things have been going with thunderstorms and winds in Calgary lately, this is a very real concern. I don't mind a little rain, but on Saturday I was over at the mall across the street when the heavens opened up. I tried braving the rain, but the mere crossing of the parking lot road saw me so soaked that I knew I needed to head back. I went into Starbucks, had a coffee, and waited for the squall to pass.
That's not to say I would have been "golden" with the truck. The transfer into the truck takes a few minutes. Doing that transfer in the pouring rain is equally challenging. On the other hand, there is underground parking at Market Mall; more than once I have saved myself from weather by parking downstairs both here at home and across the street. But then again, transfers are difficult, especially when I am alone.
What I think I might do today is split the difference. I will use my PWC to do my errands. Then I will come home and use my truck to go to Trivia. Or vice versa. Either way, in all ways, I am spending more time in that chair. It's the way things will go, eventually. At some point I won't have a choice, so learning to do it now is better that being forced into it.
Sunday, 7 August 2016
Marilyn and Kurt
“Ever notice that ‘What the hell’ is always the right decision?” - Marilyn Monroe
I like that quote. It speaks of a willingness to take risk, to live life fully. It speaks of a certain solipsistic approach to life, one she certainly live, where she seems to not care about the thoughts of others, yet deeply cares about them underneath it all. Note that she poses this as a question, as if to seek the approval of the questioner, to have someone confirm that her recklessness is appropriate and acceptable.
In many ways Marilyn, born Norma Jeane Mortenson in 1926, represents a lot of what I am dealing with these days. At the surface, I fight to live my own life, fight to do that which I think is best for me, while underneath it all I have this constant insecurity, seeking the approval of others, if not for my actions then at least for my intent. And, oddly enough, just as she ended her life early with a drug overdose...
The other phrase that runs constantly through everything I do is "Why bother?" The most famous user of that quote, in my mind, is Kurt Vonnegut, the famous American writer of Slaughterhouse Five. Vonnegut goes on with this quote to offer an explanation of why you should bother, even if you don't want to. Sans explanatory notes, I often think that. Why bother?
This morning was a great example. I went to bed a midnight last night, finally took a sleeping pill at around 1:00 AM, and slept until about 11:00 AM. When I woke up, I did not get up. Why bother? There was no compelling reason. I lay in bed until about 3:00 PM. When I finally did get up, I didn't bother with pants. Why bother? Except that my daughter will be here at 5:00 PM and I am pretty sure she would prefer to see me in pants.
"What the hell?" "Why bother?" Both questions which speak to motivation, a reason for going things. Sometimes you do things because you just can't think of a good reason not to, or even if you could, you don't really care. Sometimes you don't do things because the effort and outcome just don't seem like a fair exchange. Neither is a good answer, yet both are regularly the only answer I have for almost everything I do in my life. It's kind of sad, really.
I like that quote. It speaks of a willingness to take risk, to live life fully. It speaks of a certain solipsistic approach to life, one she certainly live, where she seems to not care about the thoughts of others, yet deeply cares about them underneath it all. Note that she poses this as a question, as if to seek the approval of the questioner, to have someone confirm that her recklessness is appropriate and acceptable.
In many ways Marilyn, born Norma Jeane Mortenson in 1926, represents a lot of what I am dealing with these days. At the surface, I fight to live my own life, fight to do that which I think is best for me, while underneath it all I have this constant insecurity, seeking the approval of others, if not for my actions then at least for my intent. And, oddly enough, just as she ended her life early with a drug overdose...
The other phrase that runs constantly through everything I do is "Why bother?" The most famous user of that quote, in my mind, is Kurt Vonnegut, the famous American writer of Slaughterhouse Five. Vonnegut goes on with this quote to offer an explanation of why you should bother, even if you don't want to. Sans explanatory notes, I often think that. Why bother?
This morning was a great example. I went to bed a midnight last night, finally took a sleeping pill at around 1:00 AM, and slept until about 11:00 AM. When I woke up, I did not get up. Why bother? There was no compelling reason. I lay in bed until about 3:00 PM. When I finally did get up, I didn't bother with pants. Why bother? Except that my daughter will be here at 5:00 PM and I am pretty sure she would prefer to see me in pants.
"What the hell?" "Why bother?" Both questions which speak to motivation, a reason for going things. Sometimes you do things because you just can't think of a good reason not to, or even if you could, you don't really care. Sometimes you don't do things because the effort and outcome just don't seem like a fair exchange. Neither is a good answer, yet both are regularly the only answer I have for almost everything I do in my life. It's kind of sad, really.
Saturday, 6 August 2016
Single Again
I am going to keep this short. It's tough to say. Katherine and I are no longer a couple; we have parted ways. I am tremendously saddened by this. She has brought a great deal of joy into my life over the last 18 months. As my brother said recently, "she is a gem". It is my sincere hope that this situation can be changed, and that we can once again be a couple, but I do not know what the future holds.
My relationship difficulty highlights another much larger problem for People with ALS. There seems to be a higher rate of relationship failure with PALS. This disease does so much more than destroy the person. It destroys families. It destroys finances. It destroys relationships. In another ALS blog, I recently read the statistic that the divorce rate in couples with a disability in the family hovers around 90%. I'm not sure about that number, but the failure of relationships in ALS is certainly higher than most.
There are a couple of basic reasons for this high failure rate. First of all, ALS and other debilitating illnesses create an incredible amount of pressure and stress on a relationship. If there are any weak seams, the fabric of the relationship will quickly be torn asunder. Secondly, the relationship of a caregiver versus a lover is drastically different. It is inevitable that the relationship will change with ALS, and once one thing changes, all others are called into question.
It's not ALS that breaks up a relationship, or at least not very often. There are cases where partners simply cannot deal with the disease. More often though it's the typical things; money issues, jealously, trust issues, faithfulness, even violence both emotional and physical. These things may or may not have happened without ALS; they just happen more with ALS.
My relationship status has changed. I'm not going to blame it on ALS. I will say this. It's a lot harder to maintain things in life with the added burden of this illness. I just don't have the strength for so many things. I'm deeply saddened, and single once again.
My relationship difficulty highlights another much larger problem for People with ALS. There seems to be a higher rate of relationship failure with PALS. This disease does so much more than destroy the person. It destroys families. It destroys finances. It destroys relationships. In another ALS blog, I recently read the statistic that the divorce rate in couples with a disability in the family hovers around 90%. I'm not sure about that number, but the failure of relationships in ALS is certainly higher than most.
There are a couple of basic reasons for this high failure rate. First of all, ALS and other debilitating illnesses create an incredible amount of pressure and stress on a relationship. If there are any weak seams, the fabric of the relationship will quickly be torn asunder. Secondly, the relationship of a caregiver versus a lover is drastically different. It is inevitable that the relationship will change with ALS, and once one thing changes, all others are called into question.
It's not ALS that breaks up a relationship, or at least not very often. There are cases where partners simply cannot deal with the disease. More often though it's the typical things; money issues, jealously, trust issues, faithfulness, even violence both emotional and physical. These things may or may not have happened without ALS; they just happen more with ALS.
My relationship status has changed. I'm not going to blame it on ALS. I will say this. It's a lot harder to maintain things in life with the added burden of this illness. I just don't have the strength for so many things. I'm deeply saddened, and single once again.
Friday, 5 August 2016
Self-Destruction
I didn't go to the Ford dealership yesterday. I went down to get into my truck, had some trouble, and just decided to forget about it. It wasn't worth the effort, not to mention the $175 which I can't afford, to get my radio and SYNC working. I just didn't want to do it.
I get into phases like this, where all kinds of things simply don't seem worth the effort. It's almost a kind of self-destructive behaviour, where I drink too much, eat badly if at all, stay up all night watching Netflix, and spend most of my day in bed. It's a kind of "self-pity" mode where I just feel like nothing is worth the effort, since nothing is going to get any better for me.
It's one of the most destructive parts of having this incessant, persistent, creeping incrementalism of a disease. It can, and does on a regular basis, steal your will to keep going. It overloads you, breaking your spirit and enthusiasm for life. You find yourself in a place where you just want to do nothing. It's almost like giving up, except you keep on breathing. I'm not ready to give up, but I feel pretty sad about my life right now, and sorry for myself.
People will chastise me for this. More than one person will likely advise me to "suck it up, buttercup". That's rather pointless. Perhaps the only people who will understand what I am going through are other PALS, others who struggle with the same challenges, losses, and deprivations which I struggle with.
This morning I was brushing my teeth. Well, not this morning so much as this afternoon when I finally got up. While brushing away, I developed a severe cramp in the flexor muscle of my lower arm. It was so bad that I could not move my arm, nor could I continue brushing my teeth with my right hand. I adjusted. I changed hands. I tried brushing without using that muscle, brushing even though the cramp hurt like hell. In the end, I stopped. My teeth are clean enough for right now.
My only thought after this happened was that it is a precursor to losing my arms. Try sucking that up. It's a son of a bitch. So it's no wonder I feel sorry for myself on occasion. My emotions will improve; they always do. But for now, it really sucks to be me.
I get into phases like this, where all kinds of things simply don't seem worth the effort. It's almost a kind of self-destructive behaviour, where I drink too much, eat badly if at all, stay up all night watching Netflix, and spend most of my day in bed. It's a kind of "self-pity" mode where I just feel like nothing is worth the effort, since nothing is going to get any better for me.
It's one of the most destructive parts of having this incessant, persistent, creeping incrementalism of a disease. It can, and does on a regular basis, steal your will to keep going. It overloads you, breaking your spirit and enthusiasm for life. You find yourself in a place where you just want to do nothing. It's almost like giving up, except you keep on breathing. I'm not ready to give up, but I feel pretty sad about my life right now, and sorry for myself.
People will chastise me for this. More than one person will likely advise me to "suck it up, buttercup". That's rather pointless. Perhaps the only people who will understand what I am going through are other PALS, others who struggle with the same challenges, losses, and deprivations which I struggle with.
This morning I was brushing my teeth. Well, not this morning so much as this afternoon when I finally got up. While brushing away, I developed a severe cramp in the flexor muscle of my lower arm. It was so bad that I could not move my arm, nor could I continue brushing my teeth with my right hand. I adjusted. I changed hands. I tried brushing without using that muscle, brushing even though the cramp hurt like hell. In the end, I stopped. My teeth are clean enough for right now.
My only thought after this happened was that it is a precursor to losing my arms. Try sucking that up. It's a son of a bitch. So it's no wonder I feel sorry for myself on occasion. My emotions will improve; they always do. But for now, it really sucks to be me.
Thursday, 4 August 2016
Solo Truck Repairs
I am going solo today, taking my truck in to have the sound system and hands free system analysed, in order to determine what repairs are needed. From that point I will have to make a decision, as this could get very expensive in an awful hurry. Katherine will not be with me today, so I will have to get in and out of the truck on my own. This could be exciting.
This whole problem, the issue of the failed radio and SYNC systems, is due to ALS. All you have to do is follow the trail of why things happened. The radio was damaged when the battery failed on the truck. The process of complete failure, or the process of jump starting the truck; one of these things caused the damage. This is not a fault of anyone. It is a fault of having ALS.
The battery died because I had the lift seat half way up in position. If I didn't have ALS, I would not have that lift seat. It's really that simple. You might think that there are plenty of other ways this happened, and there are plenty of other reasons for the lift seat, and it didn't really need to be half way up. It doesn't really matter about all the rest of the stuff. I have the lift seat because my legs don't work. My legs don't work because of ALS.
What's more, the lift seat was up because my arms are no longer strong enough to push myself around on the rough ground at my brother's property. I needed the power chair. The power chair's base is higher than the manual chair; it sits about half way up the lift seat track. So in order to get from my truck, I needed the lift seat about half way up.
It is possible that I might have been able to check this problem when I transferred, or put the seat in the lower position regardless. But why do I even have the damned thing. I only need the lift seat because my legs don't work. And my legs don't work because of ALS.
In the end, this is just another cost of living with this damnable disease. It's another thing I cannot afford, another thing I have to deal with, another problem in a life with plenty of things that are problematic. So today, without help from Katherine, I will have to figure out how to get in my truck, figure out what to do with myself while I wait for the repairs, figure out how to get back into my truck afterwards, and just figure out how to live in general. I really hate this disease.
This whole problem, the issue of the failed radio and SYNC systems, is due to ALS. All you have to do is follow the trail of why things happened. The radio was damaged when the battery failed on the truck. The process of complete failure, or the process of jump starting the truck; one of these things caused the damage. This is not a fault of anyone. It is a fault of having ALS.
The battery died because I had the lift seat half way up in position. If I didn't have ALS, I would not have that lift seat. It's really that simple. You might think that there are plenty of other ways this happened, and there are plenty of other reasons for the lift seat, and it didn't really need to be half way up. It doesn't really matter about all the rest of the stuff. I have the lift seat because my legs don't work. My legs don't work because of ALS.
What's more, the lift seat was up because my arms are no longer strong enough to push myself around on the rough ground at my brother's property. I needed the power chair. The power chair's base is higher than the manual chair; it sits about half way up the lift seat track. So in order to get from my truck, I needed the lift seat about half way up.
It is possible that I might have been able to check this problem when I transferred, or put the seat in the lower position regardless. But why do I even have the damned thing. I only need the lift seat because my legs don't work. And my legs don't work because of ALS.
In the end, this is just another cost of living with this damnable disease. It's another thing I cannot afford, another thing I have to deal with, another problem in a life with plenty of things that are problematic. So today, without help from Katherine, I will have to figure out how to get in my truck, figure out what to do with myself while I wait for the repairs, figure out how to get back into my truck afterwards, and just figure out how to live in general. I really hate this disease.
Wednesday, 3 August 2016
My Truck Is Broken
Before I say anything about what I am going through with my truck right now, I want to say how much I like that truck. I love my truck. I love the freedom it gives to me. I love the reliability of it. I love the comfort and design of the cab and seats. I love the feeling of driving it, how it handles the road, how easy it is to drive.
I have a 2012 Ford F-150, one of the modern breed of vehicles with so many interconnected systems it takes multiple computer modules to make them all work together. It would appear that when I inadvertently ran the battery down on the weekend, it damaged the Accessory Protocol Interface Module, or APIM. This is the module which interconnects the SYNC system, the system which connects via Bluetooth to my phone, with the radio and entertainment system.
This means my radio doesn't work, nor does my hands free phone system. We are not sure why they don't work. With all these computer modules, it's hard to tell. In the old days, you connected your radio. If it didn't work, you checked the fuses. If they were fine, you tried a different radio to make sure. These days it's a lot more complicated.
To find out what component of the system has failed, the Ford folks need to do a systems analysis. This will take about an hour. At $175 per hour. That's a very highly paid technician. After the analysis, the folks at Marlborough Ford will be able to tell me, probably, whether the fault lies in some power connection system, the APIM, or the radio itself. There is a small possibility that the systems reset needed for the analysis may even resolve the problem, but nobody really knows for sure. After all, it's a computer.
I long for the simpler days, for the days when I could fix a car, analyze the electrical issues, rebuild parts on my own. Oh, who am I kidding. No I don't. I love my truck. I love the modern technology, the fuel efficiency, the ability to interconnect with my phone, the ease of driving. I just don't like the cost of it when things go wrong.
I have a 2012 Ford F-150, one of the modern breed of vehicles with so many interconnected systems it takes multiple computer modules to make them all work together. It would appear that when I inadvertently ran the battery down on the weekend, it damaged the Accessory Protocol Interface Module, or APIM. This is the module which interconnects the SYNC system, the system which connects via Bluetooth to my phone, with the radio and entertainment system.
This means my radio doesn't work, nor does my hands free phone system. We are not sure why they don't work. With all these computer modules, it's hard to tell. In the old days, you connected your radio. If it didn't work, you checked the fuses. If they were fine, you tried a different radio to make sure. These days it's a lot more complicated.
To find out what component of the system has failed, the Ford folks need to do a systems analysis. This will take about an hour. At $175 per hour. That's a very highly paid technician. After the analysis, the folks at Marlborough Ford will be able to tell me, probably, whether the fault lies in some power connection system, the APIM, or the radio itself. There is a small possibility that the systems reset needed for the analysis may even resolve the problem, but nobody really knows for sure. After all, it's a computer.
I long for the simpler days, for the days when I could fix a car, analyze the electrical issues, rebuild parts on my own. Oh, who am I kidding. No I don't. I love my truck. I love the modern technology, the fuel efficiency, the ability to interconnect with my phone, the ease of driving. I just don't like the cost of it when things go wrong.
Tuesday, 2 August 2016
Living Without ALS
I had a dream last night, one of those tremendously lucid dreams, a dream where I wasn't certain if I was asleep or awake. But it had to be a dream. I dreamt that my fall out of my wheelchair on Sunday night had done something to my brain, or my spine, or my muscles. I dreamt that I was stronger, that I was getting better. I even tried a movement to test my left arm strength, one of my exercises. Sure enough, I could do it without help. Sure enough, I was stronger.
That exercise remains untested. I'll be doing it soon enough, tomorrow when Home Care comes. It's not the exercise which matters, it's the dream. Deep inside of me, despite my intellectual knowledge to the better, I still dream that I might get better one day, that I might recover from ALS. I still hope for a cure that returns me once again to strength and ability.
The other day at the ALS Clinic, the neurologist pronounced that I was essentially unchanged since last year, or that any changes were minor. He then signed off on my driver's license and said he didn't want to see me for another six months; things were moving that slowly. When I got the license, it was issued for four years, not the one year that I got last year. When my brother Adam and I were talking last night, he said he thought I could easily be here for another four years. He noted my slow progression, the typical survival times for people with the Progressive Muscular Atrophy kind of ALS, the kind I have, and my general state of health and well being right now.
Maybe I could. Maybe I could live for another four years, or even more. The question is not if I will live, but how I will live. If my symptoms stay as they are, if progression halts completely, would I want to live the rest of my life like this? Probably. If I have slow progression, when will it get to the point where it just becomes too much? I don't know. And when will the quality of my life, my ability to do things, to enjoy things, or even to pay for things, reach a point where I've just had enough? Again, I don't know.
All I know for sure is that somewhere inside me there is a dream, a dream of a life without ALS, a dream of a return to normalcy. All I know for sure is that I don't want to get worse, nor do I really want to stay like this. I want to get better. I want to live without ALS.
That exercise remains untested. I'll be doing it soon enough, tomorrow when Home Care comes. It's not the exercise which matters, it's the dream. Deep inside of me, despite my intellectual knowledge to the better, I still dream that I might get better one day, that I might recover from ALS. I still hope for a cure that returns me once again to strength and ability.
The other day at the ALS Clinic, the neurologist pronounced that I was essentially unchanged since last year, or that any changes were minor. He then signed off on my driver's license and said he didn't want to see me for another six months; things were moving that slowly. When I got the license, it was issued for four years, not the one year that I got last year. When my brother Adam and I were talking last night, he said he thought I could easily be here for another four years. He noted my slow progression, the typical survival times for people with the Progressive Muscular Atrophy kind of ALS, the kind I have, and my general state of health and well being right now.
Maybe I could. Maybe I could live for another four years, or even more. The question is not if I will live, but how I will live. If my symptoms stay as they are, if progression halts completely, would I want to live the rest of my life like this? Probably. If I have slow progression, when will it get to the point where it just becomes too much? I don't know. And when will the quality of my life, my ability to do things, to enjoy things, or even to pay for things, reach a point where I've just had enough? Again, I don't know.
All I know for sure is that somewhere inside me there is a dream, a dream of a life without ALS, a dream of a return to normalcy. All I know for sure is that I don't want to get worse, nor do I really want to stay like this. I want to get better. I want to live without ALS.
Monday, 1 August 2016
I Fell
I fell last night. I fell out of my wheelchair. Yes, it is possible. No I was not drunk. Yes I was sober. Even in the best of conditions, this kind of thing can happen, and last night it did. I had just made the transfer from my couch to my manual wheelchair. I was not quite squarely in position. I can't get squarely into position until my feet are up on the pads of the leg rests on my chair. So I leaned forward to adjust the foot pad, something I do several times every day. This time, however, I was wearing my sports pants, not my jeans. My sport pants are slippery. My balance is bad. Between the two of them, I went forward full tilt and onto the floor.
I wasn't injured, although my pride took a hit. As I was falling I yelled loud enough that Adam thought there might be a fight on the street below. Then I called him for help. He bounded out of his bed, onto the scene, and asked the most important question first. Was I hurt? No. I was a bit twisted up and my head hurt a little from the jarring, but I was basically unharmed. So I slide over to my sling track and we used the sling to lift me back into my wheelchair, whereupon we both returned to our evening of rest.
This incident, though, is important for reasons beyond a bit of an over-reach and slippery pants. For some time now I have been talking about the hidden progression of ALS, the loss of muscles unseen. This is particularly true with the loss of my "core muscles". These are the muscles in the middle of my body, the trunk. My version of ALS has been moving upwards from my lower legs to my thighs. It has wreaked havoc on my core muscles, leaving them substantially weakened, and is now moving into my shoulders.
These core muscles, and the loss of them, are hidden to most. They are the muscles that help hold you upright, that stop you from tipping over. They are the muscles that help you defecate, and for women they push out babies. Essentially they are everything between your shoulders and your legs. Major muscles included are the pelvic floor muscles, transversus abdominis, multifidus, internal and external obliques, rectus abdominis, erector spinae (sacrospinalis) especially the longissimus thoracis, and the diaphragm. Minor core muscles include the latissimus dorsi, gluteus maximus, and trapezius.
These are the muscle that hold your posture. I can just hear my Dad in my head these days saying "Sit up straight." I can't. Nor can I stop myself from falling over once I am past my center of balance. Those muscles are no longer strong enough to stop me. And that's what happened last night. I moved past my tipping point, and over I went, out of the chair and onto the floor. No stability, No strength. No balance.
I wasn't injured, although my pride took a hit. As I was falling I yelled loud enough that Adam thought there might be a fight on the street below. Then I called him for help. He bounded out of his bed, onto the scene, and asked the most important question first. Was I hurt? No. I was a bit twisted up and my head hurt a little from the jarring, but I was basically unharmed. So I slide over to my sling track and we used the sling to lift me back into my wheelchair, whereupon we both returned to our evening of rest.
This incident, though, is important for reasons beyond a bit of an over-reach and slippery pants. For some time now I have been talking about the hidden progression of ALS, the loss of muscles unseen. This is particularly true with the loss of my "core muscles". These are the muscles in the middle of my body, the trunk. My version of ALS has been moving upwards from my lower legs to my thighs. It has wreaked havoc on my core muscles, leaving them substantially weakened, and is now moving into my shoulders.
These core muscles, and the loss of them, are hidden to most. They are the muscles that help hold you upright, that stop you from tipping over. They are the muscles that help you defecate, and for women they push out babies. Essentially they are everything between your shoulders and your legs. Major muscles included are the pelvic floor muscles, transversus abdominis, multifidus, internal and external obliques, rectus abdominis, erector spinae (sacrospinalis) especially the longissimus thoracis, and the diaphragm. Minor core muscles include the latissimus dorsi, gluteus maximus, and trapezius.
These are the muscle that hold your posture. I can just hear my Dad in my head these days saying "Sit up straight." I can't. Nor can I stop myself from falling over once I am past my center of balance. Those muscles are no longer strong enough to stop me. And that's what happened last night. I moved past my tipping point, and over I went, out of the chair and onto the floor. No stability, No strength. No balance.
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