I didn't write yesterday. Instead I put my energy into having a terrific day with David, checking out the Grand National Horse Jumping competition at Spruce Meadows. It's interesting. Despite the way the name sounds, nobody there was jumping over horses. Instead the horses did all the jumping. No matter anyway. I went to look at all the lovely horses, something much for fun to me.
The most interesting part of the day had nothing to do with horses and jumping. There were any number of displays from local first responders; fire, ambulance, police. David and I had a terrific time checking out all the cool displays; we even met some of the guys who had taken me upstairs when the elevator was out! Alas, I could not get into the various vehicle displays, but David sure did, every one he could.
Today was much more challenging. It was the day of Betty's Run. First and foremost, I want to thank those who walked with me today, both in person and in spirit. Thank you to those of you who donated, and a special thanks to David for staying overnight here to get me to the walk on time. Without the support of friends and family, without your help, my life would be a true misery. It is the people around me that make me want to keep living.
I will say, however, that living this morning was brutally interrupted. Home Care arrived at 7:00 AM. That's only half way through my night! I still had three and a half hours left in my slumber period. It's brutal on my body to get up at that time of night, or morning, or whatever you call it. After eating some breakfast, David loaded me into the van and drove me out into the pouring rain. It did not portend well.
The rain was solid, from the moment we got there to the moment we left; early I might add. It was cold, wet, and grumpy. Oh, that was me. Nonetheless, somewhere less than half way round the first circuit the common consensus was to bail. We did, just in time. I was beginning to become nearly physically ill from the cold and wet. It would seem that sitting in a chair, wheel or otherwise, not moving, getting rained one, all of this makes for a very cold Richard. I very much appreciated the consensus, very much wanted to get warm and dry.
Sunday, 10 June 2018
Friday, 8 June 2018
Bad Exercises
This is a tough post to write. Not emotionally, but physically. My hands and arms are very sore and weak today. I see this as a result of my morning range of motion exercises. I am at the point where it is difficult to do them myself, so I ask for help. With help, however, my existing muscles still demand participation whether I like it or not. So they get tire, really tired.
That severe exhaustion, combined with the milder exhaustion that goes with having my legs exercises, leaves me almost incapable of eating any sort of breakfast. This is made moderately worse by the type of breakfast I get from my Friday morning HCA, Yvonne.
Yvonne seems fully incapable of getting my morning routine done with any time left for breakfast. My day is supposed to be one hour for personal care, one hour for exercises, and a half hour for preparation of a light meal, They've even added an extra 15 minutes for catheter time. So from start to finish, my Friday morning should be done at 1:15, including meal preparation.
Today's first meal of the day was breakfast cereal and a cup of coffee. Please note that my diet specifically calls for high protein and high fat. There was most certainly sugar in the breakfast cereal, so that might give me calories, but very little protien and almost no fat, at least none of the good fats I need.
So after I eat breakfast, my energy problem is not only not solved, but made worse. Today it has taken me from 1:15 PM until 4:00 PM just to start feeling capable of writing. Now it is true that I nap after breakfast every day, usuall until around 3:00 pm. But today is different. Napping has made no difference at all. I feel almost incapable of doing anything. Aa I said, it's tough work even writing this blog. And now I need to rest some more.
That severe exhaustion, combined with the milder exhaustion that goes with having my legs exercises, leaves me almost incapable of eating any sort of breakfast. This is made moderately worse by the type of breakfast I get from my Friday morning HCA, Yvonne.
Yvonne seems fully incapable of getting my morning routine done with any time left for breakfast. My day is supposed to be one hour for personal care, one hour for exercises, and a half hour for preparation of a light meal, They've even added an extra 15 minutes for catheter time. So from start to finish, my Friday morning should be done at 1:15, including meal preparation.
Today's first meal of the day was breakfast cereal and a cup of coffee. Please note that my diet specifically calls for high protein and high fat. There was most certainly sugar in the breakfast cereal, so that might give me calories, but very little protien and almost no fat, at least none of the good fats I need.
So after I eat breakfast, my energy problem is not only not solved, but made worse. Today it has taken me from 1:15 PM until 4:00 PM just to start feeling capable of writing. Now it is true that I nap after breakfast every day, usuall until around 3:00 pm. But today is different. Napping has made no difference at all. I feel almost incapable of doing anything. Aa I said, it's tough work even writing this blog. And now I need to rest some more.
Wednesday, 6 June 2018
Laundry Day Blues
Doing the laundry is a task set which is rapidly leaving my repertoire. To those of you who say "hurray" to my loss of this essential part of living, just bear in mind that I have no way to "run a quick load through the machine". I can't wash my favourite shirt to get it ready for tomorrow, not can a launder the wine towels after we make wine.
The set of tasks which make up doing the laundry start with sorting. Bear in mind that I cannot pick up a full laundry basket from the floor, so I have to dump all the laundry on the floor, then sort it into the baskets on my bed. However my arms and core muscles are sufficiently weak that I am unable to directly pick up the laundry from the floor; I pick it up with a grabby stick. For me, this is a long and tedious task, one which has now gotten to the point where it is so tiring I can do it no longer. I get a quarter way in, then my arms give out. So Home Care does this now.
The next step is getting the laundry down the hall and into the laundry room. If I have only one basket of laundry, or if I leave the laundry unsorted, I can make this run quite handily. After all, the chair is doing the work while I go along for the ride. The doors are a challenge, but I'm still capable, mostly.
Once in the laundry room, I face the difficulty of starting the washing machine so I can toss in the soap pod, then opening the lid with proper gentleness so as to not shut off the machine. Sometimes I wait for a while, just so when I open the lid, if it hits the control button it doesn't really matter. The pod and water are in already. It is, however, becoming so much more difficult to lift the laundry out of the basket and into the machine, another tiring task.
When the laundry is done, I now have a wet load of laundry to put into the dryer. I can do it, with some struggle. In fact the most difficult part is those last few items at the bottom, inevitably small things where somehow I have to reach deep into the bowels of the machine to get them. These days I use the grabby stick, yet even that requires a level of lift and contortion that wears on me.
Once the laundry is in the dryer, I just hit the button and go away, except that the button is atop the dryer at the back of the machine, another rugged reach. Mostly I can still make it. Mostly. So I leave, and wait for an hour before going back. Alternatively, an HCA has done the washing and put the laundry in the dryer, all possible within a two hour visit. That leaves me with retrieving the dry laundry.
The challenge in retrieving the dry laundry is that I must get it out of the machine, a low and extended reach into the drum, after which I must lift it up, over the top of the dryer and into the basket. I lost the ability to do that long ago, so now I use a grabby stick. Unfortunately the weakness in both my arms is sufficiently profound that after a couple of lifts, my arms just give up. They don't work. I have to stop, sometimes for as long as a half hour, before I can try again.
All in all, I'd rather just leave this to health care. Alas my current time allotment just doesn't make for it, except on Monday's when Kathy does home making. Then the allotment is three hours. Thus Monday is laundry day, unless I need something. Then I have to ask for help. HCA or otherwise.
The set of tasks which make up doing the laundry start with sorting. Bear in mind that I cannot pick up a full laundry basket from the floor, so I have to dump all the laundry on the floor, then sort it into the baskets on my bed. However my arms and core muscles are sufficiently weak that I am unable to directly pick up the laundry from the floor; I pick it up with a grabby stick. For me, this is a long and tedious task, one which has now gotten to the point where it is so tiring I can do it no longer. I get a quarter way in, then my arms give out. So Home Care does this now.
The next step is getting the laundry down the hall and into the laundry room. If I have only one basket of laundry, or if I leave the laundry unsorted, I can make this run quite handily. After all, the chair is doing the work while I go along for the ride. The doors are a challenge, but I'm still capable, mostly.
Once in the laundry room, I face the difficulty of starting the washing machine so I can toss in the soap pod, then opening the lid with proper gentleness so as to not shut off the machine. Sometimes I wait for a while, just so when I open the lid, if it hits the control button it doesn't really matter. The pod and water are in already. It is, however, becoming so much more difficult to lift the laundry out of the basket and into the machine, another tiring task.
When the laundry is done, I now have a wet load of laundry to put into the dryer. I can do it, with some struggle. In fact the most difficult part is those last few items at the bottom, inevitably small things where somehow I have to reach deep into the bowels of the machine to get them. These days I use the grabby stick, yet even that requires a level of lift and contortion that wears on me.
Once the laundry is in the dryer, I just hit the button and go away, except that the button is atop the dryer at the back of the machine, another rugged reach. Mostly I can still make it. Mostly. So I leave, and wait for an hour before going back. Alternatively, an HCA has done the washing and put the laundry in the dryer, all possible within a two hour visit. That leaves me with retrieving the dry laundry.
The challenge in retrieving the dry laundry is that I must get it out of the machine, a low and extended reach into the drum, after which I must lift it up, over the top of the dryer and into the basket. I lost the ability to do that long ago, so now I use a grabby stick. Unfortunately the weakness in both my arms is sufficiently profound that after a couple of lifts, my arms just give up. They don't work. I have to stop, sometimes for as long as a half hour, before I can try again.
All in all, I'd rather just leave this to health care. Alas my current time allotment just doesn't make for it, except on Monday's when Kathy does home making. Then the allotment is three hours. Thus Monday is laundry day, unless I need something. Then I have to ask for help. HCA or otherwise.
Tuesday, 5 June 2018
Swatting The Fly
There are times, plenty of times, with this disease where get to the point that you just want to give it all up and say "fuck it". No matter what words you use, no matter how pure you are, no matter what upbringing, your sentiment will be thus. It won't, however, be the life and death decision. That one takes a lot more than an angry moment. In fact that decision is most likely to happen when you are calm and resolved.
The moments I am talking about are those where the disease has created limitations, which in turn create challenges which will ultimately lead to frustration. The last hour or so has been a prime example of how this works. First of all, I went shopping today, so I had groceries to put in the fridge and the freezer. I know things are beyond me, like the case of beer, a 15 can case. There is no way I can put that in the fridge; I didn't even try. I might try putting singles into the drink rack later, but for now, not a chance. On the other hand, there is the 3 pounds of skinless chicken breasts.
I bought the chicken to mostly replace the stuff Anne and I had in our salad last week. It was on sale; that helped too. I brought the chicken, along with a pound of hamburger, also on sale, in my basket home with me. The first thing I did was empty as much of the basket as I could, putting the chicken an ground beef on the counter beside the fridge.
In order to put things in the freezer, I have to raise my wheelchair to full height. I did so, with the chicken and the ground beef settled into my lap so I could put them in the freezer without having to drop back down to counter height between processes. The first thing I noticed on opening the freezer is that there was probably enough room to put the chicken in, up between an ice cube tray and the package of two remaining chicken breasts from that salad.
So I tried. I lifted that 3 pounds of skinless chicken breast as high as I could, which was not much at all. Then I braced my right elbow into position where I could use the other things in the freezer to lever my hand heavenwards, to the point where finally I could touch the edge of the holding space with the edge of the skinless chicken breast package. It was at that moment that the Strawberry Shortcake Cups and the ice cube tray beneath it decided it might be fun to shift sideways ever so slightly, just enough to block my entryway into the intended landing zone.
Thus frustrated, I knew what I had to do; remove the ice cube tray and the Strawberry Shortcake cups. So onto my lap the 3 pound package of skinless chicken breasts fell. In the process the chicken knocked the pound of ground beef off of my lap and onto the floor. I left it there. I wanted to get done with the chicken first.
So I took out the Strawberry Shortcake cups and the ice cube tray out of the freezer. In the process, I also knocked a frozen, premade Onion Soup pack out of the freezer too, down to the floor where it could happily keep company with the ground beef. Unfortunately, by this time and through all this effort, my arms were too tired to even pick up the 3 pound package of skinless chicken breasts. I let the chicken fall to the stovetop. So; time to take a rest, then perhaps try something easier; the one pound package of ground beef. I did the first part; I took a rest.
After a few minutes I started my engines and put them into full power. I picked up the one pound package of ground beef from my kitchen floor using my grabby stick and my alternate hand, an non-inconsequential process. Yet it ended in victory; I had the meat in my lap. Then, using my grabby stick as a slideway path, I slid the ground beef into its intended holding groung in almost one fell swoop.
Almost.
Did I mention that all the while I am trying to put stuff in the freezer, I am being dive-bombed by a persistent housefly who must have gotten in through a crack at the edge of the screen door. It seems Samhar is not bothered too much by these little buggers, perhaps a consequence of her being raised in Eritrea, on the east coast of Africa. This flighty little bastard just wasn't giving up, so all the while I am swatting at the fly. He attacked! I went to swat! Only this time I forgot that my grabby stick was in my swatting hand. The aluminum handle smacked onto my brow, knocking the grabby stick right out of my hands and onto the floor.
I looked for my other grabby stick. It was on the dining table, the kitchen door blocking my path.
Fuck it! That was all I could say. I managed to close the fridge. I managed to pick up the Onion Soup pack. I left the ice cube tray on the counter where it is duly melting away. Perhaps I can make a Gin and Tonic before it melts completely. I put the chicken in the fridge, awaiting tomorrow when I will ask someone to put it in the freezer for me. The fruit and beer remain in the basket on the counter. Samhar will look after them in the morning.
As for me, I rolled out to the kitchen table, whereupon that bastard fly began once again to torment me. Have you ever tried to swat a fly when you arms can barely move!
The moments I am talking about are those where the disease has created limitations, which in turn create challenges which will ultimately lead to frustration. The last hour or so has been a prime example of how this works. First of all, I went shopping today, so I had groceries to put in the fridge and the freezer. I know things are beyond me, like the case of beer, a 15 can case. There is no way I can put that in the fridge; I didn't even try. I might try putting singles into the drink rack later, but for now, not a chance. On the other hand, there is the 3 pounds of skinless chicken breasts.
I bought the chicken to mostly replace the stuff Anne and I had in our salad last week. It was on sale; that helped too. I brought the chicken, along with a pound of hamburger, also on sale, in my basket home with me. The first thing I did was empty as much of the basket as I could, putting the chicken an ground beef on the counter beside the fridge.
In order to put things in the freezer, I have to raise my wheelchair to full height. I did so, with the chicken and the ground beef settled into my lap so I could put them in the freezer without having to drop back down to counter height between processes. The first thing I noticed on opening the freezer is that there was probably enough room to put the chicken in, up between an ice cube tray and the package of two remaining chicken breasts from that salad.
So I tried. I lifted that 3 pounds of skinless chicken breast as high as I could, which was not much at all. Then I braced my right elbow into position where I could use the other things in the freezer to lever my hand heavenwards, to the point where finally I could touch the edge of the holding space with the edge of the skinless chicken breast package. It was at that moment that the Strawberry Shortcake Cups and the ice cube tray beneath it decided it might be fun to shift sideways ever so slightly, just enough to block my entryway into the intended landing zone.
Thus frustrated, I knew what I had to do; remove the ice cube tray and the Strawberry Shortcake cups. So onto my lap the 3 pound package of skinless chicken breasts fell. In the process the chicken knocked the pound of ground beef off of my lap and onto the floor. I left it there. I wanted to get done with the chicken first.
So I took out the Strawberry Shortcake cups and the ice cube tray out of the freezer. In the process, I also knocked a frozen, premade Onion Soup pack out of the freezer too, down to the floor where it could happily keep company with the ground beef. Unfortunately, by this time and through all this effort, my arms were too tired to even pick up the 3 pound package of skinless chicken breasts. I let the chicken fall to the stovetop. So; time to take a rest, then perhaps try something easier; the one pound package of ground beef. I did the first part; I took a rest.
After a few minutes I started my engines and put them into full power. I picked up the one pound package of ground beef from my kitchen floor using my grabby stick and my alternate hand, an non-inconsequential process. Yet it ended in victory; I had the meat in my lap. Then, using my grabby stick as a slideway path, I slid the ground beef into its intended holding groung in almost one fell swoop.
Almost.
Did I mention that all the while I am trying to put stuff in the freezer, I am being dive-bombed by a persistent housefly who must have gotten in through a crack at the edge of the screen door. It seems Samhar is not bothered too much by these little buggers, perhaps a consequence of her being raised in Eritrea, on the east coast of Africa. This flighty little bastard just wasn't giving up, so all the while I am swatting at the fly. He attacked! I went to swat! Only this time I forgot that my grabby stick was in my swatting hand. The aluminum handle smacked onto my brow, knocking the grabby stick right out of my hands and onto the floor.
I looked for my other grabby stick. It was on the dining table, the kitchen door blocking my path.
Fuck it! That was all I could say. I managed to close the fridge. I managed to pick up the Onion Soup pack. I left the ice cube tray on the counter where it is duly melting away. Perhaps I can make a Gin and Tonic before it melts completely. I put the chicken in the fridge, awaiting tomorrow when I will ask someone to put it in the freezer for me. The fruit and beer remain in the basket on the counter. Samhar will look after them in the morning.
As for me, I rolled out to the kitchen table, whereupon that bastard fly began once again to torment me. Have you ever tried to swat a fly when you arms can barely move!
Sunday, 3 June 2018
Becoming A Snake
My tummy hurts. I feel like I might need to go to the toilet, but not enough to call for help from home care. If I didn't have ALS, I would likely just go for a walk or do so other activity, and my whole system would feel better. But I have ALS, and I can't do that. So here I sit, just generally uncomfortable, with no plan for resolution.
This happens fairly often to me, where I have a little bit of stomach upset with no way of really resolving it. It's part of the general discomfort of being stuck in a wheelchair, not having even the ability to at least exercise my upper body. All I do is sit here, like a lump, napping for hours at a time, sleeping 10 to 12 hours in a stretch. It is truly more sedentary than the most sedentary existence that you can imagine.
It is becoming awkward to do even the simplest of things with my arms now, let alone not being able to do anything at all with my legs. My HCA made a terrific breakfast for me today, in spite of having to stay extra long to do it. She made Eggs Benedict California style with Avocadoe and Shrimp, along with hashbrowns with mushrooms and onions. You couldn't fnid a better breaakfast on any restaurant menu. Sadly, I was unable to lift my fork to my mouth in order to eat. Nor could I cut the eggs and muffin without a good deal of effort.
I ended up eating sideways to the table, so I could lean back and not have to raise my arms to lift the fork. I stayed in that position while drinking my coffee too. In fact I stayed in that position after working my way through breakfast, leaning even further backwards to take a nap, sleeping for about three hours after my meal.
Maybe I'm like a snake, eating what might be a normal meal for others but that which has become a challenging meal for me. in size and in effort required to eat. Maybe, like the snake, the energy required in digestion itself makes me somnolent. Maybe snakes have a form of ALS too. After all, have you ever seen a snake walk or use arms? Maybe, somewhere back in time, their appendages just atrophied right off.
Oh my God! I'm becoming a snake!
This happens fairly often to me, where I have a little bit of stomach upset with no way of really resolving it. It's part of the general discomfort of being stuck in a wheelchair, not having even the ability to at least exercise my upper body. All I do is sit here, like a lump, napping for hours at a time, sleeping 10 to 12 hours in a stretch. It is truly more sedentary than the most sedentary existence that you can imagine.
It is becoming awkward to do even the simplest of things with my arms now, let alone not being able to do anything at all with my legs. My HCA made a terrific breakfast for me today, in spite of having to stay extra long to do it. She made Eggs Benedict California style with Avocadoe and Shrimp, along with hashbrowns with mushrooms and onions. You couldn't fnid a better breaakfast on any restaurant menu. Sadly, I was unable to lift my fork to my mouth in order to eat. Nor could I cut the eggs and muffin without a good deal of effort.
I ended up eating sideways to the table, so I could lean back and not have to raise my arms to lift the fork. I stayed in that position while drinking my coffee too. In fact I stayed in that position after working my way through breakfast, leaning even further backwards to take a nap, sleeping for about three hours after my meal.
Maybe I'm like a snake, eating what might be a normal meal for others but that which has become a challenging meal for me. in size and in effort required to eat. Maybe, like the snake, the energy required in digestion itself makes me somnolent. Maybe snakes have a form of ALS too. After all, have you ever seen a snake walk or use arms? Maybe, somewhere back in time, their appendages just atrophied right off.
Oh my God! I'm becoming a snake!
Saturday, 2 June 2018
It's The Wait
There are two sides to the ALS longevity story. We all hear about the exceptional people who live for many years with this awful disease. People still ask me why Stephen Hawking lived for so long. The answer is simple; machines. That plus an excellent health care system and a reasonable bank account. Those are factors which lead to a longer life with ALS.
Yet we hear so litte of the other side of the story, the negative exceptionalism, the incredibly short life spans with ALS. I've heard many of these stories, yet so few are in the media. Today I read of another PALS who was diagnosed last June and passed away late this May. From diagnosis to death was a journey of less than a year. The shortest I have ever heard of was three months from onset of Bulbar ALS to death.
This is why the published expected life span with ALS is so variable. I've heard it expressed as 3 to 5 years from diagnosis, or as 5 years from initial symptom onset. In either case, I havc clearly surpassed my "best before" date. Others have done better, others have done much worse. It is the same with all things in life; those who do well, those who are average, and those who do poorly.
I'm still not sure which is better; slow, fast, or average. I think I might have preferred a rapid decline. It would have been much more dramatic, much more noticeable, harder to deny or ignore, and a whole lot less expensive. Yes, there are things I would have missed. I will start missing other things the very moment I die. Life will continue on without me, as it would have if I had died 3 years ago.
I don't mind being alive. I doubt I will notice being dead. It's really the wait that's killing me.
Yet we hear so litte of the other side of the story, the negative exceptionalism, the incredibly short life spans with ALS. I've heard many of these stories, yet so few are in the media. Today I read of another PALS who was diagnosed last June and passed away late this May. From diagnosis to death was a journey of less than a year. The shortest I have ever heard of was three months from onset of Bulbar ALS to death.
This is why the published expected life span with ALS is so variable. I've heard it expressed as 3 to 5 years from diagnosis, or as 5 years from initial symptom onset. In either case, I havc clearly surpassed my "best before" date. Others have done better, others have done much worse. It is the same with all things in life; those who do well, those who are average, and those who do poorly.
I'm still not sure which is better; slow, fast, or average. I think I might have preferred a rapid decline. It would have been much more dramatic, much more noticeable, harder to deny or ignore, and a whole lot less expensive. Yes, there are things I would have missed. I will start missing other things the very moment I die. Life will continue on without me, as it would have if I had died 3 years ago.
I don't mind being alive. I doubt I will notice being dead. It's really the wait that's killing me.
Friday, 1 June 2018
Calm? Who? Me?
OK. I'm back in my PWC. I am not exactly sure what they did with it, but I understand there are parts on order, so it looks like they will either be here to do more service work, or perhaps they will ask for it to come into the shop again. At least now I know I can survive in my manual chair. With help, perhaps I can even get out, either via a pusher or in the van, or some of both.
It certainly has been difficult in the manual chair. I discovered that I can barely make the slight incline into my bathroom, and I can forget altogether about going out on the deck, over the ramps on both sides. I also discovered I need to secure the indoor ramp before something truly serious happens. I did find I could still move with some ease around the apartment, excepting the ridge between the dining/kitchen and the rest of the apartment. I made it, but it was not easy.
The whole weakness in my arms and upper body has become significant. Feeding myself is continually becoming an increasing challenge. I no longer bother trying to pick most things up once I drop them on the floor, unless it is truly urgent. Even in these cases I get stumped sometimes; I end up waiting for an HCA to arrive and help me.
I am not sure how long this process in my arms and shoulders will take to be complete, where the upper part of my body is as paralyzed as the lower part. I have this calm sort of acceptance about it happening, oddly coupled with the deeply seated anger I have about having ALS. I'm good, until I snap. This situation has lead to one key decision on my part. I am increased my medications, the ones I have for depression and PBAFTD. Perhaps that's why I am so calm about it.
It certainly has been difficult in the manual chair. I discovered that I can barely make the slight incline into my bathroom, and I can forget altogether about going out on the deck, over the ramps on both sides. I also discovered I need to secure the indoor ramp before something truly serious happens. I did find I could still move with some ease around the apartment, excepting the ridge between the dining/kitchen and the rest of the apartment. I made it, but it was not easy.
The whole weakness in my arms and upper body has become significant. Feeding myself is continually becoming an increasing challenge. I no longer bother trying to pick most things up once I drop them on the floor, unless it is truly urgent. Even in these cases I get stumped sometimes; I end up waiting for an HCA to arrive and help me.
I am not sure how long this process in my arms and shoulders will take to be complete, where the upper part of my body is as paralyzed as the lower part. I have this calm sort of acceptance about it happening, oddly coupled with the deeply seated anger I have about having ALS. I'm good, until I snap. This situation has lead to one key decision on my part. I am increased my medications, the ones I have for depression and PBAFTD. Perhaps that's why I am so calm about it.
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