Monday, 16 October 2017

A Cure Is What Really Matters

It's frustrating how a day of activity can wear me out so much. I didn't do a lot yesterday; coffee at the mall, a quick run up to Walmart. Yet even that low grade activity left me tired last night, and still tired this morning. I am beginning to feel like my best activity these days is simply staying in bed, sleeping. There is no doubt I can sleep a day away, perhaps even a couple of days.

I am up now, in my PWC, waiting for the wheelchair repair person to do the maintenance on my manual chair. The brakes need work. The tires need replacing as do the casters, those small wheels up front. This is something which has to be done every year, at a cost of around $300 or so. It's always amazed me that my annual wheelchair maintenance costs every bit as much as service on my truck. Then again, I don't replace the wheels on my truck every year.

AISH pays for this maintenance, one of the many services and benefits provided by the Alberta Health Services system. Without this kind of socialized health care support I would be in truly dire straits. On top of this kind of thing, AHS covers my prescriptions, glasses, dental care and a great many other things. Almost all I need is covered. It doesn't mean I get away scot free. There are still plenty of things I need which are not "medical" in nature.

It's not just the wheelchair this morning. Home Care, another funded service, was in this morning and will be in every morning until I die. This week we are going to look at adding evening visits too. This week I have also been fighting some sort of infection, eventually showing up as a bladder infection. So rather than rush to the hospital, or see a doctor unnecessarily, I took the prescription medication provided to me "just in case". In a non-profit system, doctors can treat patients without making them come in for every little thing. I didn't need the doctor; I just needed the medication.

Of course non of this will cure ALS, or even slow it down. I am progressing more rapidly these days than I have in the past. While it is good to have health care, I would rather have a cure. That would be the ultimate positive outcome. I don't see it happening for me, but our health care system helps many people stay alive longer, and one day there will be a cure. That matters.

Sunday, 15 October 2017

Another Reality Check

I have arrived at a couple of difficult decision for my life, aside from the big one which has already been made. No, these decisions have more to do with how I live my life day to day, not how it will end. I have decided that I will scale back my social activities, giving up going out as much, spending more time at home, likely by myself. I have also decided to give up completely on the idea of dating or any kind of intimate relationship.

With respect to social activities outside my apartment, the biggest issue is exhaustion, followed shortly thereafter by mobility and access. I think the defining issue for any social event these days will be whether or not I can get there in my power wheelchair. This means not only to the location, but into and around the location as well.

Doing things in my manual chair outside of my home has become too tiring. This is especially true now that I am no longer driving. While I can use a heavily subsidized cab system to get to and from events, there is still the issue of the large amount of energy spent wheeling myself about while out somewhere. It's just too much. So, unless there is true access for my power wheelchair, I am going to stay away.

Of course my social life has been naturally on the decline for some time. I go out far less than I used to. I no longer go to trivia nights, something which used to be at the core of my social activities. There are a limited number of venues these days, and few of them are truly accessible. I might start going back to the Cat n Fiddle, but even that will be challenging with winter coming on. Other things, like going to parties or social events has pretty much fallen away of its own accord. I just can't do it anymore.

Then there is my "love life". It's pretty much done with. Let's face it, nobody wants to start a relationship with someone having such a short life expectancy, or whose life is so constrained by illness. Even I wouldn't do it, so how can I expect anyone else to do it? No, it's a reality. I will be alone from here on out in that respect. It doesn't mean I am completely alone. I have friends and family all round. I am going to focus on that for what remains of my life.

Days alone are tough. Mostly what I want to do when I am home alone is go to sleep. I'm not gettng out much. I don't have a lot to do here at home. So sleeping as much as I want seems to work for me. That means getting up later, writing my blog in the afternoons or evenings, and not really making meals as often. All of these are already a part of my reality, so it's not a real change. It's more of a full realization of what has happened to me, to my life. It's sad. It's upsetting. It's depressing. It's also the reality for me, living with ALS.

Saturday, 14 October 2017

Another Bad Night

I am up at a normal hour, or at least normal for me. There is no reason for me to get up early in the morning. I don't have to go to work or be somewhere. So my morning doesn't usually start until about 10:30 AM when Home Care gets here. Today it started even earlier; Olga arrived at 10:09 AM, 20 minutes early. It didn't matter much. I was awake already.

Last night was tough, another one of those challenging evenings where my body simply refuses to behave. First of all, I have been having Gastro-Intestinal problems intermittently for about a week now. One day I will be fine. The next day I will be struggling with toileting, making a mess, cleaning it up. Last night I went through two sets of bed linens and ended up calling EMS at around 2:00 AM to come and help me.

I was a mess. I made a mess. There was mess everywhere, and this was the second time round. It was bad enough, then, while I was hanging in my sling, ass dripping and flailing in the wind, the EMS folks sent two female EMT's. If my embarrasment wasn't complete, this did it. I just gave up and let them help me get cleaned up and back into bed.

Today I have to deal with the aftermath, a couple of loads of laundry. My HCA did some of the cleaning in the bathroom. She was not here long enough to do laundry. The EMT's had helped with the clean up as well. It's all down to the laundry now. Nothing left but the crying.

This kind of problem is something most people get on occasion. For me the challenge is more significant. I can't just get up and run to the bathroom. The sling usually accelerates events in the most unhelpful manner. So no matter what, the outcome is fraught. Today I have taken the precaution of wearing a diaper. It's just another fact of my life with ALS. It's something I have to live with. That, and the ever increasing weakness in my arms, aggravated by the energy consumed by this issue and the effort it takes to get through it.

Friday, 13 October 2017


It's been a rough couple of days for me, and it's another late night blog posting. I don't have much to say, except that falling out of my wheelchair yesterday left me in bad shape this morning. Every muscle that worked, hurt. My head hurt. I was beat.

So I stayed in bed. I am only up now because of toilet demands and a bit of humger. In a few minutes I will be back in bed again. Tomorrow should be better. I hope so.

Thursday, 12 October 2017

Tomorrow Is Another Day

It's 10:00 PM. I am finally getting to writing in my blog. Of course, as with so many things, I have a reason, or at least an excuse. First of all, I didn't wake up until aroun 2:00 PM, at which time I promptly went back to sleep until around 4:00 PM. I dawdled for a bit, just to get used to the idea of being awake. Then at around 5:00 PM, things started getting... interesting.

First of all, I texted my friend Anne to see if she was coming for dinner today. She replied at 5:11 PM, whereupon I confirmed her attendance at 6:00 PM for dinner, telling her that I would get up shortly. About 4 minutes later I got up, using my sling, having had placed it under during the HCA's morning visit. I slung over to the commode chair. I was getting up for the first time today, and that means other things happen. I carefully placed myself over the commode chair, then lowered myself down.

When I the chair I was a bit off centered, both front and back and sideways. I adjusted while still in the sling, meaning I was supported, unable to fall. Once settled, I removed the front sling straps from their hook. It was then that I felt a bit awkwardly seated. I wanted to move backwards a bit, so I leaned forward ever so slightly, using my commode chair handrail as a grip. Alas, it was a grip to weak. I fell.

Everything slows down for me in times like this. It all becomes slow, perpetually memorable, motion. It started out as a weak stuttered sloping forward, me grasping desparately to renew my grip on the handrail, only to realize that it was too late. The forward list was about to become a full pitchpole. My core and lower muscles, unable to move due to paralysis, did nothing but go along for the ride. On that ever faster journey, I realize, perhaps a millisecond before collision that my face was headed straight for the floor.

I paused for a moment to save the memory, strong into the firmament of my mind. Perhaps I even thought rather than reacted. Either way, my face turned right, its strongest side, and, by the way, best profile. I was not quite through the turn when my orbital bone, right where it meets the zygomatic arch, hit. My face squished downwards like an octopus head. I powered my left upper lip into the effort as well. There was a thud.

Then the room got really quite. Either that or my right ear went deaf for a few minutes, just to match the left. My face hurt, from lips to crown. There were no apparent injuries other than a fat lip getting steadily fatter on my upper left. My shoulders and arms hurt from their collective efforts, futile in the end, to soften the fall. I fell, and hit, hard. Not hard enough to break anything, other than my pride. Just hard enough to do a bit of facial bruising and fatten my upper left lip.

I lay there for about 10 minutes, sizing things up. My next thought was my phone, on the dresser above. I was down, solid. I would need help to get back up, help with sling, help with wheelchair positioning, help with emotions. So I put a towel underneath myself, sliding myself just far enough to reach my phone's power charger, a substanial effort consuming about 10 - 15 minutes. Fortunately my phone was plugged in. I pulled the cord. Down came the phone. Nothing broke. I called 911,

The ambulance crew arrived. On their arrival Excitement all round, this was their first time in attendance in my apartment. I doubt it will be the last. First they got me back into my sling from whence I transferred myself back into the commode chair. They took vital signs. You'll all be happy to know that my blood pressure is fine, my cranial bones are stable and attached, and that I don't have diabetes. Once all that was done, they ensured I got safely to the bathroom, even going so far as to help get my pants off. They left and I restarted my plan from an hour ago. No harm, no foul.

Except there was one, very real casuality of this calamity. Me. No, not me in the person sense; me in the metaperson sense. Not my pride so much, but my self-confidence. "I did this last month. Why can't I do it this month? How can I live like this? Why?" Of course there is no why. Things just are, or are not. I've got ALS. I am getting weaker by the day. I will die, soon, because of this disease. That's just the way it is.

I will recover. I always do, until that time I don't. I am going to bed shortly, well medicated. I will sleep soundly tonight. "After all, tomorrow is another day."

Wednesday, 11 October 2017

Over And Over And Over

Believe it or not, there are some things going on in my life with ALS that I don't share in the blog. I've been asked by some to limit my posts regarding bodily functions. Some things are just too personal for me to post here; my children read this blog. Some things are repetitive, happening all to often with ALS, like falling down or dropping things or exhaustion. You can only tell those stories so often. After a while, they become the background noise, like a political speech on TV while you eat lunch. The lunch is far more interesting, even if the political speech has a substantial long term impact.

So, all of the said....

The last few days have been really difficult for me. Not difficult because they were hard to do; difficult because they wrenched away my last bit of dignity. I've been having tummy troubles for a few days now. There have been accidents along the way. My tummy continues to rumble. It still hurts a bit. However I think the worst of it is over.

I have to be careful when I talk about "the worst of it". That really happened yesterday and last night. First of all, shitting myself is what happens at times like this. It's messy, dirty, stinky and nasty. Now add tummy troubles and diarrhea. When nature calls, I am not in a position to effectinvely respond in a timely manner. Last night, thanks to my tummy trouble, I soiled myself not once, but twice. By the way, did I mention that I had an ass like a shotgun, or perhaps the spray nozzle of a hose, during this time of great activity?

These events are nothing if not undignified. For me, it takes a long time and a lot of effort to deal with, including getting into my commode chair, removing offensive clothing, cleaning myself and my clothing afterwards. By the time I have dealt with an event like this, I am exhausted. I need to rest.

Yesterday it happened twice, within a couple of hours of each other. That wasn't even the worst event. On Tuesday morning I was laying on my bed as my HCA, Kathy, dressed me. The activity of dressing me stimulated things; I didn't even make it off the bed. That goodness Kathy was there to help clean me up. On the other hand, this was another one of many humbling things which make up my life these days. Over and over and over and over...

Tuesday, 10 October 2017

Winter Boots

I've written before about the extra, added costs which come along with having a substantial illness like ALS. There are all kinds of things you don't think about until you get there. Then you get upset, mad, angry, pissed, whatever. Why do I have to spend money on things I will need for such a short time?

It's winter boots this time. I used to have a full collection of footwear; sports shoes, hiking boots, winter boots, motorcycle boots, dress shoes, casual shoes, even slippers! Now not a one of those pieces of footwear fit me, thanks to the swelling from edema. Even if they did fit, I would not be able to put most of them on; my toes curl under as I slide any shoe on my foot. So, for what will likely be the last winter of my life, I am looking for new winter boots.

I have running shoes I can wear, but they aren't all that warm. I could put on heavy wollen socks, but then I can't put on shoes overtop. It bothers me even more that I can't just buy any old boot or shoe. I've never been that fussy about footwear. If it worked, I would wear it. Now, with paralyzed toes and swollen feet, I need to get winter boots that zip up the side and have a larger shoe size than I typically wear. Once again, clown shoes.

I've already done some online shopping but I won't purchase online. I need to try to see if what looks like it might work really does work. The boots I have been looking at range between $100 and $200. I'll probably only wear them a dozen times. I could go to the thrift store and see what they have; I might get lucky. In the end, however, it just bugs me that I need new winter boots.

Never mind boots. None of my winter shirts, the pullover knitted long sleeve underwear style shirts that I find so comfortable, fits me any more. My waistline is just too much for them. So now I have to look at shirts too. Even if I get cheap ones, they will cost about $20 each. So now it's boots and shirts. Last month it was pants of all kinds. Some would think it paradise, to have to shop so much. Me? I wish I didn't have ALS. None of this would be a problem.