Today, here in Canada, is a day dedicated to increasing awareness around mental health issues. It's ironic, as my mental health has taken a beating in the last few days. I think the realization that ALS is now clearly attacking my hands and fingers has something to do with my mild depression and general feeling of sadness, and, dare I say it, self-pity. It may not be socially acceptable to say it, but these last few days I have been feeling downright sorry for myself.
I don't think this feeling of self-pity is entirely condemnable. Let's face it; I'm in a fairly pitiable spot. Advanced ALS is no dance at the Roxy, no walk in the park. This is a tough spot to be in, especially for someone as dependent on hands and fingers as I am. What's going to happen when I can no longer type, no longer dial the phone, no longer pick up a glass? So, yes, I'm feeling a bit sorry for myself. Wouldn't you?
There are those who will remind me to find joy in what I have, or rather, what I have left. For those who have not suffered this suffering, that is, at best, a specious comment. I have, for seven years now, been working hard to find joy in my ever diminishing life. The first two years I didn't know what was wrong, so it was possible to pretend I could be fixed. After diagnosis, with reality firmly stomping on my hopes and dreams, I learned to live with what I could, when I could. I have to say, though, that this requires effort, work. Self-pity requires no effort at all; it's just there to take over me.
Stop and think for a minute. I, acutely aware of the process, am losing my body, slowly inexorably. My intellect is intact, such as it is. My mind is relatively intact, although my emotional core is taking a real beating. Psuedo Bulbar Affect is having an impact on some cognitive functions, but it is not harming my intellect. Some days I wish it would, taking me to a place where I was not only unaware of the changes, but unconcerned about them too.
I am fairly and firmly tired of this disease. I'm not dead yet, but the life is slowly being sucked out of me, ounce by ounce, milligram by milligram. It's wearing, grinding. If you want to give me grief for a bit of self-pity now and then, consider trading places with me. Then again, maybe not. I wouldn't wish this on anybody.
Wednesday, 31 January 2018
Tuesday, 30 January 2018
The Pill Bottle
I hate writing about what is happening to my body, especially when so many other things in my life are going so well. Thanks to support from all of you, I have been able to start not one, but two batches of wine. I've been able to meet my extra mortgage payment this month as well. I've managed to get out this last weekend and David is planning other outings for me. He is even looking at insuring my truck rather than have me sell it, so he can take me on a few more road trips!
Yet, all the while surrounded by these good things, I am constantly faced with the challenge of ALS, the continuing loss of ability. Lately I have been noticing the increasing weakness in my fingers. It's not a lot, just enough to let me know what will happen in a few months or so. I'm having just the slightest bit of trouble opening my pill jars. Not enough trouble that I need help, not even enough that I would consider changing to easy-open blister packaging. No, it's just enough to make me know it's happening.
That's how it works with ALS. You can see the train coming. You can see it a long way off, watching it get closer and closer. Then, as it nears you, you realize fully how completely helpless you are, trapped in its path, unable to move out of the way. You know it's going to hit you. You know you are going to lose every bit of muscle and strength you have. And as you wait, you can feel its vibrations, feel the reduced strength, see the atrophy, sense the total loss to come.
This is the terror of ALS; the waiting and knowing. The hopelessness lies in knowing that there is nothing you can do, no treatment, no cure, nothing but wait for the end of it all. Along the way you can experience moments of joy, times of happiness, but in the end, as you try to open a pill bottle, or pick up a towel, or turn over in bed, you realize what is happening to you, how it will all end.
I am not afraid of ALS. I am ready to face whatever it will do to me, but only for so long. At some point it will be enough. My hope is that day is not too soon. After all, I just started a couple of batches of wine; I need to be around for at least a few months. But that damned pill bottle has me worried.
Yet, all the while surrounded by these good things, I am constantly faced with the challenge of ALS, the continuing loss of ability. Lately I have been noticing the increasing weakness in my fingers. It's not a lot, just enough to let me know what will happen in a few months or so. I'm having just the slightest bit of trouble opening my pill jars. Not enough trouble that I need help, not even enough that I would consider changing to easy-open blister packaging. No, it's just enough to make me know it's happening.
That's how it works with ALS. You can see the train coming. You can see it a long way off, watching it get closer and closer. Then, as it nears you, you realize fully how completely helpless you are, trapped in its path, unable to move out of the way. You know it's going to hit you. You know you are going to lose every bit of muscle and strength you have. And as you wait, you can feel its vibrations, feel the reduced strength, see the atrophy, sense the total loss to come.
This is the terror of ALS; the waiting and knowing. The hopelessness lies in knowing that there is nothing you can do, no treatment, no cure, nothing but wait for the end of it all. Along the way you can experience moments of joy, times of happiness, but in the end, as you try to open a pill bottle, or pick up a towel, or turn over in bed, you realize what is happening to you, how it will all end.
I am not afraid of ALS. I am ready to face whatever it will do to me, but only for so long. At some point it will be enough. My hope is that day is not too soon. After all, I just started a couple of batches of wine; I need to be around for at least a few months. But that damned pill bottle has me worried.
Sunday, 28 January 2018
Good Things In Every Day
It's been a busy day or two, which for me can be both a good thing, and a bad thing. I prefer to look at the good, especially when there is lots to be had in it. I think that's one of the secrets, or not so secrets, about dealing with ALS, or for that matter any serious medical condition. Finding the light, hidden in the darkness; that's the best way to approach all of this.
I've been dealing with a new HCA, both yesterday morning and this morning. Yesterday, for her first visit, she came with an LPN. In light of the challenges of my care, I have told the agency that no untrained person will be permitted into my home without either an LPN or an RN Supervisor. It's simply safer for me, both physically and emotionally. On the other hand the LPN yesterday knew very little about attaching a condom catheter, so I did most of the instructing, actually attaching the catheter myself, a real exercise when you can't see down there.
On the other hand the new HCA seems to be pretty good. She seems unfazed by the intimacy of my care, unworried about handling my penis properly, and confident in everything else that's required to get me going in the mornings. She's 28, so not so young as to be inexperienced. She's done the HCA role for a while, and is working towards her LPN, graduating in a year, so she could be a part of the care team for a while yet.
Last night was good too; David took me out to a place here in Calgary called "The Rec Room". It's a gigantic arcade parlour for all ages, with a bar and restaurant. The food was reasonably priced, as was the beer. We hung out there for a couple of hours, checking the place out for future MeetUp events. It was great for me to get out.
Today has been a bit quieter; nothing bad about that. I've had a visitor. I'm making spaghetti sauce for Tortellini; I feel up to cooking and that's always a good thing. Then I have two wine kits to get started. The gear is all set up, thanks to my guest. There will be nothing too heavy for me to do, so I can start these kits on my own, once again making me feel like I am still at least somewhat capable of caring for myself.
It's important for me to find success where I can. My life is becoming more limited, day after day. Taking a lesson from something my brother Adam said to me when all this started, I try to find the good thing in each day. It keeps me going. Then again there are days like today, with lots of good things going on. I'll be tired, and even that is a good thing. I'll sleep well tonight.
I've been dealing with a new HCA, both yesterday morning and this morning. Yesterday, for her first visit, she came with an LPN. In light of the challenges of my care, I have told the agency that no untrained person will be permitted into my home without either an LPN or an RN Supervisor. It's simply safer for me, both physically and emotionally. On the other hand the LPN yesterday knew very little about attaching a condom catheter, so I did most of the instructing, actually attaching the catheter myself, a real exercise when you can't see down there.
On the other hand the new HCA seems to be pretty good. She seems unfazed by the intimacy of my care, unworried about handling my penis properly, and confident in everything else that's required to get me going in the mornings. She's 28, so not so young as to be inexperienced. She's done the HCA role for a while, and is working towards her LPN, graduating in a year, so she could be a part of the care team for a while yet.
Last night was good too; David took me out to a place here in Calgary called "The Rec Room". It's a gigantic arcade parlour for all ages, with a bar and restaurant. The food was reasonably priced, as was the beer. We hung out there for a couple of hours, checking the place out for future MeetUp events. It was great for me to get out.
Today has been a bit quieter; nothing bad about that. I've had a visitor. I'm making spaghetti sauce for Tortellini; I feel up to cooking and that's always a good thing. Then I have two wine kits to get started. The gear is all set up, thanks to my guest. There will be nothing too heavy for me to do, so I can start these kits on my own, once again making me feel like I am still at least somewhat capable of caring for myself.
It's important for me to find success where I can. My life is becoming more limited, day after day. Taking a lesson from something my brother Adam said to me when all this started, I try to find the good thing in each day. It keeps me going. Then again there are days like today, with lots of good things going on. I'll be tired, and even that is a good thing. I'll sleep well tonight.
Saturday, 27 January 2018
Friday, 26 January 2018
The Morning Dirge
The expected event occurred. It did not occur when expected. It did not occur as expected. Yet occur it did, the first grace notes of the slow dirge which was to follow rising within me, expelling without me, at around 5:00 AM. This was to be no single explosive crescendo, but a series of subtle escapes, each carrying with the the indications that there would be more to follow.
This discomforture was to continue its slow march to its inevitable end, a steady drum beat of ponderous perterbation, interrupted by brief snatches of rest where my rumblings abdominal released the bass drum and settled for a simple snap on the snare. Then, finally, at about 6:30 AM, my innards determined themselves to deliver unto me the final stage of my folly. I shit myself, fully and completely. The prunes and laxative had worked.
There I lay, wondering what to do next. I pondered. In fact I even fell back to sleep for a bit. I awoke, pondering once again. I could call Alberta Health Services Home Care Emergency Support Team. But the timing was key. It would likely take them at least an hour or two to respond, or, if busy, they might ask me to call the Home Care agency, CBI. If I just called CBI directly, they might respond by saying that they were going to take an hour or so, but they would just go into my regular morning routine, meaning I would be up and in my wheelchair at 9:00 AM, a truly horrendous outcome for me. I could just lay there and wait until 10:30 AM, settling into some sort of semi-sleep state until my regular HCA arrived.
I opted for calling CBI. It was 7:18 AM, an unGodly hour in my book. The CBI Coordinator was good about things, assuring me that they would send a special Care Aide to help me with my immediate need, but also send a Care Aide for my regular morning visit. I could sleep some more after the mess was cleaned up. She warned me it might take a half hour or more to get a Care Aide to me, but also assured me she would call back once she had someone on the way. So I settled in for a bit of a wait.
Then, not 15 minutes after completion of the call, my phone rang. I thought it was the Coordinator calling with an update, something of a surprise since they rarely call back when they say they will. To my surprise, it was the Front Door, the HCA awaiting, ready to come to my aid! It was Edith, cheery and chipper, having started her day at 5:00 AM. She tore into the challenge before her, cleaning up everything which needed cleaning, then hung me in my sling to encourage further activity from the operatic horror at my rear end. It worked. There was more. She cleaned me up again, going so far as to do a bit of digital extraction to get a small bit that was blocking the exit path. She had arrived at 7:37 AM. She was gone by 8:10 AM. I was clean, warm, and dry, ready to sleep again.
I did sleep, until she arrived as planned, even a bit late, to take me through my morning routine. I showered. I tried to use the toilet to no avail; troublesome elements within me refused to coopertate, so we forced the issue with the sling. She catheterized and dressed me. She put me in my wheelchair and made the bed for me. She even put my shoes on! Then, once again she was gone, returning to the fray, the neverending battle with dirty diapers, condom catheters, socks and shoes, medications and food. No, we are not children, but our needs are much the same. The only I have that holds it all together is humour. On the other hand even a child will tell you that shitting yourself at 5:00 AM is not fun, unless you make it fun somehow.
This discomforture was to continue its slow march to its inevitable end, a steady drum beat of ponderous perterbation, interrupted by brief snatches of rest where my rumblings abdominal released the bass drum and settled for a simple snap on the snare. Then, finally, at about 6:30 AM, my innards determined themselves to deliver unto me the final stage of my folly. I shit myself, fully and completely. The prunes and laxative had worked.
There I lay, wondering what to do next. I pondered. In fact I even fell back to sleep for a bit. I awoke, pondering once again. I could call Alberta Health Services Home Care Emergency Support Team. But the timing was key. It would likely take them at least an hour or two to respond, or, if busy, they might ask me to call the Home Care agency, CBI. If I just called CBI directly, they might respond by saying that they were going to take an hour or so, but they would just go into my regular morning routine, meaning I would be up and in my wheelchair at 9:00 AM, a truly horrendous outcome for me. I could just lay there and wait until 10:30 AM, settling into some sort of semi-sleep state until my regular HCA arrived.
I opted for calling CBI. It was 7:18 AM, an unGodly hour in my book. The CBI Coordinator was good about things, assuring me that they would send a special Care Aide to help me with my immediate need, but also send a Care Aide for my regular morning visit. I could sleep some more after the mess was cleaned up. She warned me it might take a half hour or more to get a Care Aide to me, but also assured me she would call back once she had someone on the way. So I settled in for a bit of a wait.
Then, not 15 minutes after completion of the call, my phone rang. I thought it was the Coordinator calling with an update, something of a surprise since they rarely call back when they say they will. To my surprise, it was the Front Door, the HCA awaiting, ready to come to my aid! It was Edith, cheery and chipper, having started her day at 5:00 AM. She tore into the challenge before her, cleaning up everything which needed cleaning, then hung me in my sling to encourage further activity from the operatic horror at my rear end. It worked. There was more. She cleaned me up again, going so far as to do a bit of digital extraction to get a small bit that was blocking the exit path. She had arrived at 7:37 AM. She was gone by 8:10 AM. I was clean, warm, and dry, ready to sleep again.
I did sleep, until she arrived as planned, even a bit late, to take me through my morning routine. I showered. I tried to use the toilet to no avail; troublesome elements within me refused to coopertate, so we forced the issue with the sling. She catheterized and dressed me. She put me in my wheelchair and made the bed for me. She even put my shoes on! Then, once again she was gone, returning to the fray, the neverending battle with dirty diapers, condom catheters, socks and shoes, medications and food. No, we are not children, but our needs are much the same. The only I have that holds it all together is humour. On the other hand even a child will tell you that shitting yourself at 5:00 AM is not fun, unless you make it fun somehow.
Thursday, 25 January 2018
Constipation And Solutions
I hate being constipated. It's a feeling I suspect a great many of you share with me. It is, however, a feeling which is relatively new to me. Up until last January, I had never experienced any sort of constipation, let alone a serious bout of it. That episode last January was hospital worthy, a process I don't want to repeat.
Unfortunately what has been happening is that as my core muscles have failed me, these bouts of constipation have become worse and worse, such that I am contending with this condition on a regular basis, my own regularity being replaced by this newfound irregularity. What used to be a predictable morning event has become a morning hope with no predictive capacity.
I sit. I wait. I hope. I push with whatever musculature I have left. We've taken to bypassing the commode chair and just using the sling on the second or third mornings of continuing discomfort. Even with the squishing effect of the sling, it just doesn't work some days. Like today. So I sit some more, wait some more, hope some more. Then I finally just give up, accepting that I will have to live with stomach discomfort and rectal pressure throughout my day.
The final insult is that I am sitting all day, that pressure just building with no release. I can't just get up and try again. I am no longer able to undress and re-dress myself. while I might be able to sling myself onto my commode chair, I am unable to get my pants off. So, if I want a do-over, if I want to try again in a few hours, I am out of luck. I can call for home care; they are reluctant to come out "on spec". Their response is to call them after the fact and they will come, usually an hour or two later, while I sit in my own shit.
So today my diet is mostly fruit. David is coming over for dinner so steak is a must. It's Robbie Burns Day, so ample Scotch is definitely on the menu. I feel sorry for whomever is my evening HCA tonight. One never knows the outcome if a day of fruit and an evening of Scotch. If nothing, it will be even worse for my morning HCA tomorrow, for my nightcap will be prunes and a laxative. It could be an explosive morning.
Unfortunately what has been happening is that as my core muscles have failed me, these bouts of constipation have become worse and worse, such that I am contending with this condition on a regular basis, my own regularity being replaced by this newfound irregularity. What used to be a predictable morning event has become a morning hope with no predictive capacity.
I sit. I wait. I hope. I push with whatever musculature I have left. We've taken to bypassing the commode chair and just using the sling on the second or third mornings of continuing discomfort. Even with the squishing effect of the sling, it just doesn't work some days. Like today. So I sit some more, wait some more, hope some more. Then I finally just give up, accepting that I will have to live with stomach discomfort and rectal pressure throughout my day.
The final insult is that I am sitting all day, that pressure just building with no release. I can't just get up and try again. I am no longer able to undress and re-dress myself. while I might be able to sling myself onto my commode chair, I am unable to get my pants off. So, if I want a do-over, if I want to try again in a few hours, I am out of luck. I can call for home care; they are reluctant to come out "on spec". Their response is to call them after the fact and they will come, usually an hour or two later, while I sit in my own shit.
So today my diet is mostly fruit. David is coming over for dinner so steak is a must. It's Robbie Burns Day, so ample Scotch is definitely on the menu. I feel sorry for whomever is my evening HCA tonight. One never knows the outcome if a day of fruit and an evening of Scotch. If nothing, it will be even worse for my morning HCA tomorrow, for my nightcap will be prunes and a laxative. It could be an explosive morning.
Wednesday, 24 January 2018
A Health Care Advocate
There are days, like today, where I get really tired of the exercise of being an advocate for my own care. I don't have anyone, beyond myself, who is in a position to navigate the web of processes and people involved in the various elements of my care. I'm not sure which is worse to manage, the process or the people, but doing them both tires me out, wears me out, at a time when I have so little energy for it.
My comments below should not, must not, be taken as complaint. They are just examples of the various kinds of things I have to manage these days. They all take energy out of me, be they good or bad. Even the best of things can make me tired, things which benefit me. It's just the way it is. They may not seem like a lot to some of you, but they are a lot to me.
Today I am navigating issues with the Home Care agency as they try to resolve their issue of not having appropriately trained people on the weekends, especially when one of my regular care givers is away for any reason. I think, in the final analysis, the agency is going to tell me they will have to send a Licensed Practical Nurse, since the LPN's are supposed to be trained in all care needs, especially my more complicated and personal care needs. However they are also going to tell me that if they have to go that route, I will have to accept lengthy delays in care on those days when my regular care givers are not available. In short, if they don't have the coverage, I'll have to wait in bed until they get to me.
Another issue I am dealing with today is my move towards Self-Managed Care. Alberta Health Services has "changed their process" for applying for self-managed care. In addition to re-applying I will have to retake their "special seminar" on Self-Managed Care. They are booking seats into March right now, so no matter what I do it will be at least three months before I can even begin to look at a live in care aide or other modes of care delivery. This, of course, assumes that my already over-burdened AHS Nurse Case Manager is able to get them the message that I need to get to Self-Managed Care as quickly as possible.
And then...
Today the wheelchair technician from the Alberta ALS Society came by to make adjustments to my power wheelchair. I have my "old" chair back and I am thrilled. The adjustments were needed and, as usual, the ALS Society was right on top of it. Alan, the technician, came in and spent a couple of hours adjusting the seat back, seat depth, foot angle and any number of other smaller things. All that time I was basically trapped in the chair, as he adjusted it to my own needs. I am very happy to have a chair that fits me and happily sat while he did the work.
But I am exhausted now. I need a nap, a long rest. Being my own health care advocate is exhausting.
My comments below should not, must not, be taken as complaint. They are just examples of the various kinds of things I have to manage these days. They all take energy out of me, be they good or bad. Even the best of things can make me tired, things which benefit me. It's just the way it is. They may not seem like a lot to some of you, but they are a lot to me.
Today I am navigating issues with the Home Care agency as they try to resolve their issue of not having appropriately trained people on the weekends, especially when one of my regular care givers is away for any reason. I think, in the final analysis, the agency is going to tell me they will have to send a Licensed Practical Nurse, since the LPN's are supposed to be trained in all care needs, especially my more complicated and personal care needs. However they are also going to tell me that if they have to go that route, I will have to accept lengthy delays in care on those days when my regular care givers are not available. In short, if they don't have the coverage, I'll have to wait in bed until they get to me.
Another issue I am dealing with today is my move towards Self-Managed Care. Alberta Health Services has "changed their process" for applying for self-managed care. In addition to re-applying I will have to retake their "special seminar" on Self-Managed Care. They are booking seats into March right now, so no matter what I do it will be at least three months before I can even begin to look at a live in care aide or other modes of care delivery. This, of course, assumes that my already over-burdened AHS Nurse Case Manager is able to get them the message that I need to get to Self-Managed Care as quickly as possible.
And then...
Today the wheelchair technician from the Alberta ALS Society came by to make adjustments to my power wheelchair. I have my "old" chair back and I am thrilled. The adjustments were needed and, as usual, the ALS Society was right on top of it. Alan, the technician, came in and spent a couple of hours adjusting the seat back, seat depth, foot angle and any number of other smaller things. All that time I was basically trapped in the chair, as he adjusted it to my own needs. I am very happy to have a chair that fits me and happily sat while he did the work.
But I am exhausted now. I need a nap, a long rest. Being my own health care advocate is exhausting.
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