Wednesday, 31 May 2017

Just For A While

I'm sitting in my Ikea Phoang chair, writing my blog post. It's been a long time since I have done this, perhaps years. When I was first diagnose, when I could still get in and out of this chair on my own, I would settle here and write. Then, as transfers became more difficult and arms weakened, I rather gave up on it, deciding it was easier to sit at the table, to write on it's firm, steady surface.

Sitting here, in this chair, in this place, has always been one of the best parts of my day. From here the sky stretches to the prairie, today showing thin patches of blue smudge against thin patches of white; the wind restless, shifting from gust to still and back again; the air full and thick, humid, heavy. It's the breeze that makes the day today, the offer of cool air stripping away the clammy clutch of moisture. I can feel it, even here in my chair, courtesy of my open balcony door.

The hanging baskets and my tree make a dance of it, swaying with each gust. The small birds huddle into the tree, flitting in and out, living on the wind as an old friend and trusted ally. Every once in a while a crow or magpie will land on a branch, stare in my window, see nothing of interest, then bolt off for the next port of call. And always there is the noise of people and traffic below.

I'm tired today, unsure if I will get up out of this chair at any point, unsure if I will wander past my computer and my book today. I have water next to me, along with the ubiquitous jug. Of course the jug works poorly in this chair; I am no expert at peeing uphill into a container which points back downwards at me. Nor am I wearing a catheter, although the catheter would be a nuisance too, equally plagued by the vicissitudes of gravitation and slope. Bag below bladder, that's the rule. It makes it tough to sit with your feet up.

So, I suppose, at some point I will leave the comfort of this chair, once again engaging in the life of a man with ALS, a man in a wheelchair, a man tired of challenge. But not just yet. For a while, just a little while, I am going to watch the wind in the trees, listen to the chirps and squirps of the small birds, feel the air push past me. Just for a while.

Tuesday, 30 May 2017

Getting Worn Down, Over A Rib Roast

I have this nice little 2 pound rib roast I just took out of the freezer. I look at the price of it; $16.38. I think to myself how expensive that is for such a small bit of meat. Then I realize that I will barely be able to eat half of it, especially given how I am about the combination of cooking, followed by eating. It's entirely possible I will cook it, then eat none of it at all. That's the way it goes these days.

How I cook it will have some impact, not much, but a little. If I simply grill it, like a gigantic, thick steak, it won't be as much work. So perhaps I will eat a bit. If I oven roast it, with spices and all, and then make some gravy, I doubt I will each much, if any of it. I'll be too tired from the work. I could even do it on the BBQ, but again the work of it all will destroy my appetite.

Wine will help. It stimulates my appetite. But after a glass or two of wine, I'll just want to have more wine, and eat foods that require no preparation and little or no cutlery. I would likely chow down on my giant bowl of coleslaw rather than eat the steak. I might have a mouthful or two, maybe not. Plus there is the effort of cleaning up the BBQ, both before and after cooking.

Then there is the question of mushrooms. I love mushrooms, especially with a good cut of meat. This roast is one of the nicest cuts of meat going. I think Rib Roast is as good as it gets when it comes to beef. I am purely a carnivore on this front. Yet mushrooms make it so much better. So now I have to ask if I have the energy to go across the street, today or tomorrow, to get some fresh mushrooms. Will I feel like sauteing them? Will I want to clean and slice them? Is any of this worth the effort?

So the real questions are these. Who will come and help me cook? Who will eat with me? Who will bring mushrooms and help prepare them? Who will make the effort worthwhile. You see, I don't want to do any of this if I am left up to myself. It's too much work. Even now I'm thinking I should just put that Rib Roast back in the freezer and give up. The coleslaw will be enough, just like it will be tonight.

All of this, over a simple meal. It's the emotional side of ALS that really wears me down.

Monday, 29 May 2017

What Happens When?

I went shopping yesterday. I wanted some fruit, and another carton of milk. I also wanted to go up to Canadian Tire, ostensibly to purchase a watering can, but really just because I like going to Canadian Tire. Fortunately I didn't buy a watering can; I don't really need one. Nor did I buy any of the other fun stuff I was looking at.

My purchasing problems began at Safeway, not in terms of expenditure but in terms of ability. I discovered yesterday that I can no long pick up a mini-watermelon, nor can I lift up my shopping bag with a watermelon and cantaloupe in it. Even the 2 litre carton of milk is getting heavier for me these days. Perhaps becoming poor again in a few months will help with the situation; I'll no longer have the money for expensive fruits and vegetables. Instead, I will be on the path to becoming the vegetable.

Losing the strength in my arms is leading me to other concerns. For example, never mind not being able to pick up a glass of beer, what happens when I can't pick up my urine jug? At that point I will have to be permanently catheterised. I get a lot of help getting myself dressed these days. What will happen when I cannot get undressed by myself? It will mean having home care come in and put me to bed at night, another loss of independence and lifestyle. I won't be able to stay up late, bingeing on Netflix and wine. Perhaps this is a good thing, perhaps not.

Even my coffee cup is feeling heavy these days, tugging at my arm muscles as I pick it up for a sip between paragraphs or sentences. I can feel the pain of overwork in my upper arms, both left and right. I can no longer pick up my toolbox without some sort of help and it is almost impossible for me to put my drill kit up into the cupboard. Someone has to do these things for me now.

Losing my legs was easy compared to losing my arms. Losing my legs meant going into a wheelchair, changing my way of getting around, giving up some of my leisure activities. Losing my arm strength means giving up everything. There is no replacement, no wheelchair for the arms. This disease is getting very real right now, very potent in its impact. I suspect that my daughter is correct; once my arms are gone, I will go very quickly after that.

Sunday, 28 May 2017

Crappy Parker

Last night I went out to a social event. I am no longer able to go solo in my truck, so I went in my power wheelchair, taking public transit to my destination, or as close as it would get me, then powering my way along the sidewalk to rest of the way. Alas, it was not a simple thing. Then again, with ALS, very little is simple. As I have said before;  nothing is easy, nothing is fast.

The first part was relatively easy, after going the the process of preparing for a night out, putting on a catheter, putting on shoes, getting my coat on and getting out the door. I just powered my way over to a nearby C-Train station, the Brentwood station, about 15 minutes by power chair. I didn't bother with the bus; the weather was lovely and the fresh air was worth the extra few minutes.

I rolled onto the train almost as soon as I got to the station. It just worked that way. The train itself takes about 40 minutes. Then there is about a 15 minute walk, or 10 minute roll, along the sidewalks to get to the pub where we were all meeting. Unfortunately, about half way along the way, there was a car parked right in front of the sidewalk access ramp where I needed to cross the street. No access. None. Totally blocked.

I turned around and went to the patio of a nearby restaurant where it looked like there might be a candidate, and shouted out, asking if anyone owned the car blocking the wheelchair access ramp to the sidewalk. No luck with the owner, but whom should I see there? Mickey Hays, one of my co-workers when I was at the CBE! He, along with a couple of other guys, came and helped me muscle my power wheelchair up the curb, onto the grass, and then onto the sidewalk on the other side of that badly parked car.

Mickey and I said our hellos. I expressed my gratitude, and was on my way. I had a great time at the pub, enjoying good company, celebrating the 40th anniversary of the release of Star Wars. Next thing I know, it's 10:00 PM and I am exhausted. So, after bidding my leave of all, I powered out once again, into the night, onto the sidewalk, only to encounter, once again, that accursed car, still blocking the access ramp two hours later.

I had had enough. I called the cops. 911 and all. While this may not have been an emergency, it was certainly important, perhaps even urgent. The only way for me to get around the car was to take my power wheelchair into the middle of a busy street, going off the sidewalk and into potential harm's way in traffic. I didn't want to do that. The 911 operator agreed wholeheartedly. However I did opt to go around the block the long way on a back road where there was less traffic, just to get past the obstacle.

An officer arrived within minutes, about as long as it took me to get around the block. As he got out of his truck, I apologized for being a nuisance. It was just too much for me, I said. He replied "No. This is exactly what you need to do. I understand completely. That's why I came so quickly. This is just wrong."

I teared up. I'm still tearing up a bit as I write about it. To have my feelings of frustration so validated, to have someone able bodied see the challenge from my perspective, to have him able to do something about it, that meant so much to me. It's tough enough being in the chair, but when idiots thoughtlessly block the way with no regard for anyone but themselves, that's plainly wrong.

I'm not sure what happened to the car. I'm pretty sure the officer planted a very expensive ticket on it. I'm also reasonably certain he called a tow truck to unblock the sidewalk access. I feel no shame in all of this; quite the reverse. I feel vindicated. I know I did the right thing. I don't feel badly for the driver, not even one little bit. He or she is just lucky they didn't show up while I was around. Then the officer might have had to restrain me. I'm sure none of us needed that.

Saturday, 27 May 2017

This Gardening Thing

I have a garden on my balcony! It's not quite done yet; the last couple of planters need to be filled in and put in place. Andrea and Dan are coming over this afternoon to help with that. I am so excited to see them in place that I don't know if I can wait until 3:00 PM for them to show up. I might just sit out there and enjoy what is done already, perhaps with a Gin and Tonic.

Gardening is not, nor never really has been, a thing for me. I've always enjoyed the idea conceptually, planting a seed, watching it grow, enjoying the harvest. It's just that the whole dirt and flowers and weeds and watering stuff never really held much pleasure for me. It just seemed like a lot of work. Yes, gardens look lovely, and I truly appreciated the work my ex-wife did with flowers and plants. She was the natural gardener in our house. I was the heavy lifting kind of helper.

Something happened last year. I got a hanging basket or two, really enjoying the flowers and sunshine while sitting on my balcony. This year I decided to go to town with the project. There are now four box planters on my balcony railing, two complete and two for completion today. There are also two hanging baskets with a variety of flowers, hung low from the ceiling on chain so they are easy to see. There is a third one which I don't quite know what to do with. I'll decide that today. Finally, there is a pepper plant, complete with a pepper, and a beefsteak tomato plant, both set into the end of the balcony against a climbing trellis.

If I am still alive next year, and capable of doing or directing the work, I'm already thinking of doing something different, perhaps a potted clematis for that trellis, and maybe cherry tomatoes in one of the rail planters. It has gotten me, this gardening thing. I kind of like it.

Friday, 26 May 2017

Too Tired

I'm tired, too tired to write. I'l see how I feel later in the day.


It's later in the day. I'm still fairly much exhausted, even though I slept will last night. I think it might be a hangover from the Zopiclone. This would be my second night in a row where I have taken one and a half tablets. Sure, it knocks me out, but it continues to have an affect even this afternoon.

I'm kind of emotionally tired and upset as well. I sent out an invitation to my "gang" asking if anyone wanted to come help me with planting up my planters, and then staying for a BBQ. I got no answers. Nobody wanted to come. It was bound to happen sooner or later. After all, it's summer. People have gardens of their own, plans for their weekends. I am the only one with nothing but free time on my hands.

Oh well, onward and upward. At least I can putter away on these things on my own. Instead of a BBQ, I am going to go out to a 40th Anniversary Star Wars party with some other friends at a local pub.

Thursday, 25 May 2017

No Breakfast Today

On Tuesday, Wednesday, Thursday, and Friday, my HCA, Micheal arrives at 9:00, in theory. In practice, he usually gets here about 10 to 15 minutes early, so I wake up at 8:45 or so. Saturday through Monday start at 10:30 AM. I made this schedule change in the forlorn hope that I might get more useful stuff done in the earlier parts of my day. The truth is that these are the days where I tend to have a long nap in the afternoon.

These are also the days with Micheal. He is a reasonable care aide, his biggest asset being his reliability. While the nature of the job means there will be so irregularity in his arrival and departure, he is almost always here when he says he will be here, and when he is late I know something serious has happened.

Micheal has his limitations. Part of his job is to make me breakfast. If I am lucky, I get a fried egg sandwich once out of the five days he is with me. More often I get myself a bowl of cereal or some fresh fruit, perhaps both. Today I got nothing; I have to fend for myself. He simply doesn't cook. He says I am like a woman because I cook, and I prefer to have my laundry folded and put away, rather than just dumped into a drawer or left in the basket. I will be discussing this with his supervisor in the next few days.

His other challenge is initiative in being helpful. He will do exactly what it says on his list of things to do. No more. Today I had plants in the sink from watering them last night. He calls to me and asks me to take the plants out of the sink. I asked him about help with watering and he said "No. I am not a horticulturalist." Given that he is here five days out of seven, this could be a problem.

Today I am going to meet with my Home Care Coordinator Nurse, Dani. I am going to talk to her about help with my laundry and help with watering my flowers. I am also going to discuss getting a therapy pet, one to keep me company and perhaps help pick things up when I drop them, or do light switches when I forget. My thought is to have a doggy pad on the deck. I wonder how Micheal will respond if and when theses things are added to his duties. I suspect he will do them, reluctantly, just like making breakfast for me.

Wednesday, 24 May 2017

Arms and Clowns

I couldn't sit up in bed this morning. I don't mean it took me several tries. Several tries is how every morning goes these days. I am having increasing trouble getting from a laying position to a sitting position. This morning, after several tries, I couldn't do it at all. I wore myself out, fell backwards from my partial attempt, and just laid there, wondering what I might do.

So I made a couple of phone calls, looked at the nasty weather outside, and rested. Then, after about 15 minutes, I tried it again. This time I repositioned my body a bit, adjusted my angle to the M-rail a bit, and, after two or three attempts, managed to get upright. It's all about the physics, the placement of my lifting arm and bracing arm, where my center of mass and balance are, and how I feel in my arms.

When I first wake up, or when I first try to sit up, I am fairly sure that all the muscles involved are not involved, even though they should be. I think it takes my body a while to become fully functional, or as fully functional as it can get these days. The continual loss of strength in my arms is what is causing me so much trouble with sitting up. I can no longer just pull myself upright. I am too weak. These days I have to wake up, rest up, then, hopefully, get up.

Even after doing all this, it wasn't enough when my day started. I had to wait, and go through a whole other round of attempts and struggles. Now that I am up, in my wheelchair, dressed, my arms are aching and sore from the effort, especially my left upper arm, right next to my shoulder. This is the worst area of failure right now.

I've felt this coming. I've seen this coming. I've known it would happen. It is the precursor to the final event, where I will be completely unable to do this alone, where I will need help in even the simple act of getting upright. When? I don't know. The parade has begun but the clowns haven't shown up yet. When they do, I won't be laughing.

Tuesday, 23 May 2017

My Green Thumb

It's late. That's how it goes some days. I've spent most of my day today, of all things, gardening. You need to know that I am not naturally a gardener. I can barely tell an azalea from a zinnea, a vegetable from a fruit, a herb from a weed. In truth, my ex-wife was the gardener, one of her talents that I continue to admire. She could take all these plants and work them into something beautiful. Mine? The would mostly die.

I'm hoping that won't happen to me this year. I'm hoping the hanging baskets and herb garden and tomato plant and pepper plant all survive my clumsy hand. I'm hoping the ledge baskets will thrive in spite of my inability to know what one is from the other. I am putting my faith in those who help me, regular watering, and the power of nature.

I cannot give a real reason why I want a garden on my balcony this year. I've not had one in years past. I've spent my summers doing things that took me away from my apartment, busy with social activities and road trips. This year won't be all that different. I am away for a couple of weeks in June, with other plans for a variety of short trips in July and August. On top of that I am expecting visitors during that time, a time far too busy for me to fuss over a garden.

The need for a volunteer gardener has been noted in previous entries to this blog. Well things just got real. I apparently have a balcony filled with members of the Kingdom Plantae, all needing loving care and attention. This is not one of my skills.

So far, today, I have managed to put together the Herb Garden. This involves the potting of five plants from the nursery. I setup the hanging herb basket, filled it with moistened potting soil, and transferred the plants from their nursery pots into the herb garden basket. Yay!! I am a gardener. The hanging baskets are up. I've put the tomato and pepper plants against the far wall of the balcony with a fancy metal trellis behind them. Next comes the four rail mounted potting frames.

Of course none of this would happen without the extensive help of so many people. Dion helped me pick the plants. Anisa helped me modify the rail boxes so they would fit on the rails. Anne helped me with positioning the pepper and tomato plants, along with hanging the hanging baskets. She also set me up to do the Herb Garden.

Let's see what tomorrow brings. More gardening I suspect. I cannot do this quickly, but I can do it. That's what matters.

Monday, 22 May 2017

Feeling Good

I feel good today. I got plenty of sleep last night. Kathy, my HCA, has cleaned my apartment top to bottom. She made me sandwiches, the kinds she makes that I really like. I've had a shower and used the bathroom with no issues. I just feel good.

This doesn't mean any sort of sudden strength. Nor does it mean the pain stops or the body exhaustion goes away. It's a mental thing, where my spirits are up, where I emotionally feel good. Even as I write this, my eyelids are heavy with body exhaustion. In spite of 12 hours of good, solid sleep, I am still tired. My shoulders are hurting along with my upper arms. My body aches, everywhere, even in the dead muscles.

But here I am, saying I feel good today.

It's the strangest thing to live in this body, to feel my mind separate from it on such a regular basis, to know that there is never a good day for my body when it comes to ALS. The secret to life, mine, yours to any life really, is to recognize that you are not your body, that the person you are is held within your emotions, your attitudes, your spirits. Your body will fail you, I guarantee it. Your mind is yours to keep, regardless.

I suppose that's why I think Alzheimer's is so much worse than ALS. We are intellectual creatures, simply inhabiting a physical body. To lose the mind and keep the body seems far more unfair than to lose the body and keep the mind. I enjoy so much in my life with the help of others, so many things where devices replace legs and arms. I have an active mind, in spite of a failing body. And every once in a while I get to feel good, really good. Like today.

Sunday, 21 May 2017

To Sleep, Perchance To Dream

I dislike days like today, days where I feel tired, where I am tired, but I can't sleep. It started last night, after an absolutely terrific get together with friends. We visited, had great food and wine, laughed and talked. Then everybody went home. That's my worst part of every evening, when everybody leaves and I am once again home alone. Then I decided to watch a bit of Netflix. Next thing I know it's 3:00 AM and I am still wide awake.

I remember seeing the sunrise on the horizon as I finally fell into a fitful sleep. I woke up every hour, whether I wanted to or not, not having to pee or anything, just waking up so I could look at the clock and wonder if I had actually slept. I must have, at least for some of it. Then, after about six hours of nonsensical psuedo-resting, my Home Care Aide arrived to help me get up and get dressed.

She is a 30 something young Mom from Byelorus. Her English is not all that good, but we get by when she has to fill in, generally for Micheal. He likes to take the odd Sunday off, especially if he is lightly booked. Olga, yes that's her name, is chipper and hard working, wanting to do her best and do it well. There's not a lot of nonsense about her, but she can smile and appreciate the humour in some parts of my life.

When she walked into my bedroom this morning, she looked at me and grinned. She knew I hadn't slept much. She knew I was on the edge of sending her away. It wouldn't matter; the HCA's get paid for their time here whether I accept their help or not. Regardless, she looked at me and we exchanged the usual morning pleasantries, though not always pleasant from me. Then she said, "Where you want me to start?"

I must have looked confused, because she repeated herself with some clarification. "Where you want me to start? Here or kitchen?" I realized she was offering me an extra hour of rest, which I gladly took. Off she went to the kitchen, tidying and, at the end of her efforts, cooking an omelette for me. When she returned to me, slumped as I was on the bed, she helped me into my sling. While I went to the washroom, she did more tidying. After I was done, she helped me onto the bed and began to help me dress.

Then her time ran out. I am certain she expected me to stay in bed. The omelette would have gone in the fridge. She would have gone on her way. I would have gone back to sleep. I kind of did that. I was partly dressed when I sent her on her way. As she closed the door, I lay down once again, for yet another couple of hours faking sleep, dozing lightly, feeling the sun heating my room, feeling sleepy but not sleeping.

I am up now, still feeling sleepy. I ate my omelette, my eyes still demanding closure while my brain demands that I be alert. I didn't bother with the rest of dressing; no pants, no compression socks. I'm just going to sit around today and do as little as possible. Then, in about six hours, I will go to bed again, this time with a double dose of Zopiclone. I will sleep tonight.

Saturday, 20 May 2017

Campfire Blues

My friend Mike I coming for dinner today. He moved away to Kamloops for work last year, so we only get to see him here in Calgary once it a while. It's a seven hour drive. I've made that drive a fair bit, going down to the coast to see children, grandchildren, and my parents. It can be a really tough drive, especially in the dead of winter. I'm glad he can make it this weekend.

It's a long weekend, the official start of outdoor season in Canada. Summer frivolity has begun, with camping trips, road trips to the mountains or lake or seashore, or just hanging around of the deck enjoying friends and family, a beer in hand. Gardening has begun in earnest, planted patches appearing in neighbours yards reminding you that you should do one of your own this year. Even apartment balconies are getting decked out, trimmed with hanging baskets and herb trays.

It would be nice to participate in this season with some enthusiasm. Alas the weakness in my arms and hands makes many activities far to difficult these days. People I would have gone with at one time are off with other friends, unable to deal with the difficulties of travel with me and my many required devices. Thank goodness for David, taking me to Scotland and Ireland in a few weeks. These will be hotel nights, not camping nights, so life will be a bit easier. Still, it takes commitment to travel with me.

I wish I could go camping once again, at least for a night or two. I would like to sit around the fire, eat a charred hot dog cooked over an open fire, drink a few and tell a few stories, all under the sky spread above, glowing with a million stars like the stretched embers of the fire at my feet. This part of my life is gone, or at least out of reach. I cannot do it alone. I have my cot. I have my sleeping bag. I also have my wheelchair, my commode chair, my grabby sticks, my medications, my compression stockings, my M-rail. In other words, I have a lot of stuff, and that is what makes it tough.

It would be nice, though. Just once again. To sit by the campfire and watch the night go by.

Friday, 19 May 2017

Pain. Gain.

ALS has been at war inside of me in some sort of massive battle for my arms and shoulders over the last week. My left arm is just about ready to give up; not completely, but enough that it will make a substantial difference in my functioning. My right side is still fighting the battle, but it is a battle which is leaving me exhausted, completely.

I noticed it a few days back, when I did all that work on the one bathroom shelf. That work day, and the small amount I did the following day, simply tore the daylights out of the muscles in both arms and in my shoulders. The problem is that doing this kind of thing makes the destructive power of ALS magnify. The muscles that I damaged in the work are not going to repair, or at least not come back to the same condition as before. The last few days they have been proving that to me, simply not handling even the lightest of tasks without massive complaint and tiredness.

This is what is happening to me in general, as I creep down this road to decrepit, sliding down the hill into complete disrepair. It's not one big thing, nor is it a bunch of little things. It is a combination of everything; the loss of strength, the loss of energy, the exhaustion involved with mere activities of daily living.It's all becoming too much for my upper body.

This is also why I am having trouble motivating myself to be social. It takes so much work to get into my power chair and go out. It's not just the chair. It's the catheter, the coat, the gloves, the shoes. It's getting ready and getting going, all of which tires me out. If I want to do something, I have to push past that tiredness, which demands more on my body, which wears me out even more. For every action, I pay a price, a very high price.

I've been exhausted the last few days. More rest does little more good; I've been getting more rest. I just have to keep going, regardless, accepting the limits of my physical self while pushing the boundaries of my spirit and willingness. This is not an easy illness. Nor does it have to be a hard one, unless you want some sort of quality in your life. I will take the pain. Life is my gain.

Thursday, 18 May 2017

Carpe Diem

The sunshine came blasting through my windows this morning. Our star has transited its massive arc across our sky, or rather we have made the 10 month journey around the sun to where it's arc now shines directly into my window once again. This arc will continue for another month, at which point it will reverse its eternal march across the heavens, eventually going far enough south so that my window, once again, is out of direct reach.

My apartment is warm. It's position against the sun means the windows are almost always bathed in its warmth. I have neighbours on all sides, providing more heat and insulation. The thermostat in my apartment is almost never turned up. Perhaps there were two or three days in the darkest, deepest cold of this winter where the radiators were radiating. Beyond that, I need the windows open most days to keep it cool in here.

It always amazes me how quickly winter turns to spring, and spring to summer, here in Calgary. Of course the truth is that winter can make a snap appearance almost anytime. This is the only place I know of where they talk about a late summer snow storm, or where spring snow is not only expected, but surprising in its absence. Still, it was winter a couple of weeks ago. There was snow on the ground; the trees still barren; the grass still shrouded in the dusty brown of winter. Then, a couple of days back, it started to change. Trees began to bud. Grass greened. Snow melted.

The warmth of summer won't last long. In less than 120 days we will be well into September, possibly seeing the first of the autumn snows. We will have a month of spring, two months of summer, a month or so of autumn, then the chill winds of winter will once again blow down from the mountain slopes.

While summer is here, I will revel in it. I'm already planning an excursion out in my power chair today, for nothing other than some time in the sun. I'll do some mindless shopping; swiss cheese, bell peppers, watermelon, cucumbers. I'll go to the shop furthest away, so I can spend more time outside. I might head over to Tim Horton's for a coffee to go, then sit in the sun, sipping, and basking in the warmth. I will seize the day.

Wednesday, 17 May 2017

A Dry Well

I'm having a tough day today. My arms hurt, especially my right arm. My hands hurt, especially my left hand and thumb. My mid to lower back hurts, the kind of hurt I get from being in a wheelchair too long. On top of the aches and pains, I did not sleep well last night. The Zopliclone did not work; I wonder if I a developing a tolerance for it. Regardless, as I sit here now I am tired, droopy, worn, slow and struggling. And I've already had a 2 hour nap!

It would be such a joy to imply these days don't happen very often, so treasureful to shove it off as an oddity, a rarity. Alas days like today are now the normal in my life. They have been for some time. The other day I was thinking that the lack of energy in my body might have something to do with the lack of focus. Certainly working on that shelf gave me some focus. It did not, however, stimulate any renewed energy from within me. All I did was steal strength from today in order to use it yesterday.

What makes these real tired days worse is the low grade nausea, just enough to convince me that eating would not necessarily be a bad thing, but it might not be a good thing. Given my overall tendency these days to avoid eating, this would be the kind of day where the bowl of cereal I just finished would be my full dietary intake for the day. The energy needed to put food out simply exceeds my level of available energy.

What's worse is that I have company coming for dinner tonight. I am making salmon, a fairly simply meal. While it may be simple, the processing of all the bits and pieces takes time and energy, something I resent giving up right now. On top of have to prepare dinner, I have laundry to do, laundry which cannot wait another day. Thanks to a couple of inauspicious moments with my pee jug, all my jeans in are in the laundry except the pair I am wearing.

I don't want to do any of this. I want it to stop. I want other people to cook. I want someone to do my laundry. Home care will do this, but they don't make "major meals". Salmon is a major meal. And they don't do anything on short notice, especially laundry. For those who tell me to "suck it up", from where shall I magically create that nonexistent energy? From where will arise the sucking up power?

There is no reserve. The well is dry.

Tuesday, 16 May 2017

Shelf Time

Last Sunday I declared my boredom. There are so many things I cannot do, compounded by my general ennui these days. Instead of just sitting there, wallowing, I decided to do something, to take on a project which has been bothering me for more than a year.

I want a third shelf in my bathroom alcove. I have this nook at the end of my shower. It is 27" wide. This statistic will become important shortly. In addition I want to move the second shelf upwards by three inches, making the shelf spacing 15" instead of 12". Since the bottom storage area is 30" tall, there will be a certain symmetry in the shelves. The top one will be a 60", that's five feet. It's high enough that using it for limited access is fine, but low enough that I can reach it from the lift function of my power chair.

The start of this project was to remove and re-shim the first shelf. This also includes putting in additional support screws. The reasoning is simple. If I make the shelf space three inches higher, more stuff will be put on the shelf. More stuff equals more weight. More weight requires more supporting screws. The shim part is simply to align the front of the shelves so they don't bump the wall as they slide forward from their recessed position. Yes, these are slide-out shelves.

In order to do the work on shelf one, I had to remove all the towels on the shelf, then remove the shelf itself. Now, in a wheelchair this kind of task presents some substantial challenges. The shelves themselves are roughly two feet wide and over three feet deep. They are not overly heavy, just really, really awkward. They have to be lifted in and out of the drawer rail, a task which is completely beyond me.

So I thought about different ways to handle that shelf. After a variety of failed methods, I ended up using the rolling stand from the bathroom topped by the booster seat that I use to get into my truck, along with a couple of large, heavy books on the top. This made a rolling cradle, wobbly as it was, from which I could move the shelf in and out of its drawer rollers. Once out, I would lift it down to the ground, all the while seated in my wheelchair.

Then came the next challenge. The alcove is 27" wide. My wheelchair is 28" wide. So much for getting in close to things. What I had to do instead was lean in precariously, using various other walls and shelves for bracing, and undo all the screws past the first 12" of the drawer rails. The rear screws, the ones I would never reach, did not need shims. I am thankful for that. So, with all the requisite grunting and straining, something I usually do other places in the bathroom, I managed to get the screws out what needed getting out.

Next came the shims. The first time I did these shelves, I cannot remember who was helping me. At that time I didn't put too much thought into the shims. Even now I think they were fine, but the additional weight requirement was enough to concern me. This time I had made shims which exactly followed the outline of the drawer rail. This would make the shims less obvious. I also split the shims, some on one side and some on the other, further making them less obvious.

When I say "made the shims", I mean hand made them with a wall cutting knife and some thin board material I have left from another project. Each shim takes about half an hour to make. I needed two last night. I will need four over the next two phases of this project, plus a couple of spares for breakage.

Finally I was ready to re-assemble. It took two or three tries to get the shims, shelves, and screws all set properly. Even now there is one screw where the head is at an angle and it is impacting the drawer rail. making the shelf tough to pull. I need to fix that one.

Once I was sure all the shims were set, that I had enough wall anchors in place to support the drawer rails, and all the screws were in, I put the drawer back in. Then I put back all the towels on the first shelf. When you look at it, you can hardly tell I did anything at all. Then again, it was such a simple task that it should have taken about two hours.

For me? I started on Sunday evening, working until 11:00 PM. Then I worked some more yesterday afternoon and evening, finally finishing about 10:00 PM. Two days elapsed with somewhere in the order of 16 hours of effort. For me. For just one shelf adjustment. Fuck, I hate this disease.

Monday, 15 May 2017

Garden Angel

I need a gardener. To be completely honest, I need a volunteer gardener. I can't afford to pay for one. The reason I need a gardener is to help pretty up my small balcony. It's very small, just a perfect size for sitting on, enjoying a Gin and Tonic. However I have no flowers or baskets this year.

Last year, Katherine did the gardening. It was small, just a single hanging basked on a stand, one which I managed to kill while she was away in Hong Kong. I forgot to water it. These days it's more than just forgetting to water any plants. It's getting out there with a watering can, reaching whatever baskets, hanging or otherwise, that are in place. While I might be able to do it, I am just as likely to not, simply to save the effort for something else.

This would not be an onerous task, this temporary gardener. It would involve going with me to Canadian Tire to pick out the various hanging baskets and rail baskets, then picking out the contents for said baskets. I would love to have a small herb garden out there, along with some pretty, blooming flowers. I have always loved hanging baskets, a couple of them would be nice too. Then, once the garden was in, I would need help with the watering, perhaps once or twice a week.

This would not be an entirely volunteer assignment. There would be compensation in the form of wine, perhaps dinner now and again, and my gratitude. Plus there would be the results of the herb garden. So who out there is willing to help, willing to make my balcony something more than dust and a BBQ? Who would help me choose the stuff, setup the garden, and help me water it now and again? Are you out there, oh garden angel?

Sunday, 14 May 2017

I'm Bored, AKA My Energy Bank Is Empty

I'm bored. I'm home alone, tired, nothing to do. Actually there is lots to do in my apartment, starting with cleaning it up. It's a mess after a very busy yesterday with Kate, Phil and the boys over. Things are too heavy for me to move, to big for me to pick up, to hard for me to push back into place. Kathy will come tomorrow and fix it all.

There is laundry to fold, and another batch to wash. Laundry is, for me and everyone else, a perpetual motion machine. Today I will do laundry. Tonight there will be new laundry in the basket, waiting for the Wednesday wash, which sometimes doesn't get done until Friday. Yet even laundry is an exhausting task for me. A great many times I avoid it, delay it, stay away until compelled by my empty dresser. Soon I will be asking Home Care to do it for me; the energy cost is starting to get up there.

I could go out, but where? I can't use my truck solo thanks to weak arms and an elevated lift seat. If I use the ramp here at home, how to I get out of the truck somewhere else? I was thinking of setting up a permanent ramp here at my apartment so I could at least get in and out at home. Then, when I go out, I can ask people to help me with my folding ramp. But I don't have the energy or strength to build the permanent ramp. I'm too far gone.

It might have been fun to get out in my power wheelchair. Ironically, the batter charger for the lift I used to get into the PWC is broken. I found that out when I went to charge the batteries so I could use the lift. There is a way around this. I could use the attendant drive to move the PWC into my bedroom, then use the bedroom sling to lift myself into the chair. First I would have to move the laundry baskets and the commode chair. Then I could relocate the PWC and myself. As well, when I got home I would have to relocate the various bits and pieces. That's a lot of energy.

There is always Netflix, although most of it is tedious and boring for me these days. There are not a lot of really interesting documentaries; I've watched most of them, some twice. Much of the entertainment production is little better than what you see on TV. Even the much vaunted British televisions shows are lagging in quality these days, or at least that's how it seems.

So here I am. Bored, tired, lonely, alone, lacking the enthusiasm to even grab a bottle of wine. I suppose laundry is my best bet. it will keep me going for an hour or two. Then comes the next struggle. What do I make for a dinner I don't actually feel like eating.

Saturday, 13 May 2017

It's Still My Kitchen

I'm halfway through my day, or well into it anyways, and I am only now finding a few moments to do some writing. My HCA, Micheal, arrived late today. Saturdays are always difficult for him; they cram his schedule and leave it up to him to make it work. Fortunately he knows that an extra half hour of sleep in a Saturday mornings is something I rarely complain about. If it gets to over an hour or so, then I might have issues, but not if its only 30 minutes.

About 15 minutes after Micheal arrived, so did my friend Tonny. He came to make breakfast for me today. He does this periodically, ever few weeks or so. Whenever I try to tell him how much I appreciate it, he reminds me that he has to eat too. It's both fun and upsetting to me to see how quickly he settles into my kitchen, how quickly he can get things done in there. I used to be like that. Alas, no more.

It's odd how so many people know their way around my kitchen. It was once a territory I defended furiously. It was my castle, where I ruled the kingdom of cooking. I was the one who organized the meals. I was the one who did the dishes. I was the one who put stuff away. These days I can to almost none of this. When Brad was over last night, dominating the kitchen as he does, I asked what I could do to help. He said I could issue orders, but as usual nobody would pay much attention to them. Basically everybody else takes over the galley while I pretend to sail the ship.

I am fortunate in this regard. Most of my friends are very comfortable in the kitchen, and more that willing to listen to my experience. At times, when I mistake "my way" for the only way, they will remind me, or ignore me. Mostly, though, they understand, they help, they take care of things. Sometimes they even do what I tell them.

Friday, 12 May 2017

Big Silver

It took me almost 2 1/2 hours to get up, go to the bathroom, and get dressed today. There were difficulties and a tremendous lack of motivation blocking my way. I spent most of the time between struggles and strains thinking about suicide. I think about it a lot these days.

There is a place, high up in the coastal mountains, call Nahatlatch. Most people who know if it at all, know of the Nahatlatch Lake Park, or the Nahatlatch River. They come there across the bridge from Boston Bar to North Bend, deep in the walls of the Fraser Canyon, north of Hope, BC. I've never come at it that way.

Many years ago, you could drive up the East Harrison Logging Road, out of Harrison Hot Springs, BC. That road would take you to Big Silver Creek. From there you could follow the logging roads high into the mountains, right up to the glacial tops, squiggle over the rocks and ice, then drive down the Nahatlatch road, right down to the Fraser River. From there, you could follow Highway 1 down to Hope, and Highway 7 right back to Harrison, making it a big circle of adventure. My Dad and I did it a couple of times in my little Ford Ranger.

It was a beautiful drive, or clamber if you will, up steep mountainsides where water dribbled and dripped and creeked and cracked its way down the western slopes, off of the glacier and snow melt, into a deep canyon, steep sided, slicing its way down the mountain into the soft marsh where Big Silver Creek runs into Harrison Lake. It is a land of massive trees, plentiful deer and bear, incredible waterways, and danger.

A few years back, perhaps 25 or so, four boys in big a 4X4 truck tried to muscle their way across the slick surface of the smooth rocks at the top. They didn't understand the physics of moving water. They were full of themselves and their truck and their youth. A couple of the boys got out to take pictures while the other two horsed the truck across the high creek and rock face. They didn't understand that big tires don't bring big friction on that surface. The truck went sideways, down the 1,000 foot drop at the edge of the rocks. Two boys died. Two walked out. The government completely closed the road in another example of protecting the stupid at the cost of the intelligent.

About halfway up that Big Silver Creek Road, coming from the Harrison side, the logging road cuts across that water, that driblet and pool at the top becoming a raging torrent, cutting through a vertical sided canyon, crashing over a round of giant boulders pushed out by the water, smashing into another thin crack of rock, only to pound into a deep, swirling pool of black, perpetual motion. The water is hypnotizing as you sit on that bridge, watching it crash and carom through the granite sides, into that deep pool, then down even more falls as it collapses down the mountainside. The spray rises to the decks of the bridge above; you can smell the iron and other minerals in the water, feel the rinse of ice still within the droplets. Sometimes the mist would be thick enough that you could wash your face in it.

The bridge across is a logging bridge, laid of nearby timbers, nothing but a couple of 12X12 in beams on either side to stop the wheels of logging trucks from straying to far to the left or right. In all my life, I never approached the edge of that bridge, never took the risk that some did of sitting on the beam, dangling my legs into the swirling dark below. I am not that brave. Yet now I think, that would be a lovely place to die, and so easy for me.

I could take one last drive into the BC wilderness, up the East Harrison Lake Forestry Service Road. I could look for bear and deer. I may yet again see a cougar stalking a deer in the wild, dense temperate rain forest. I could stop for a while and gaze at the broad, smooth outflow of the Big Silver as it neared its junction with Harrison Lake. I could put my truck into four wheel drive and muscle up that mountain road, something I have long wished to do. Then, when I got to the bridge, I could park right up close to the edge. I could open my door, slide onto my transfer seat, then simply push off, down a hundred feet, into the dark, churning waters below.

I don't know if they would ever find my body; that water has a way of pushing downward eternally, especially in the black pool below the rocks. Certainly they would know what happened, simply by looking at the truck position. It wouldn't take long to determine that I was missing; I might even leave a note. But maybe not. It is a story that would tell itself.

It would be over. I would be gone, to become one with the water and mountain, to become one with the land and sky. It would be done.

Thursday, 11 May 2017

Working To Live With A Monster

This disease can be really confusing sometimes. First of all, I am feeling generally good today. I'm up-beat, well fed, reasonably ready for the day. It was one of those mornings were everything worked, where dressing went easily, where Mike made a Fried Egg Sandwich for me. Yet in the midst of all of this, the pain in my right arm, from the shoulder down to the base of my fingers, is enough to cause me to take a couple of Tylenol. I'm even considering Naproxen! It hurts.

So why does the rest of me feel okay, even good, when my right arm, not my left arm, hurts so much? Of course I have one answer for this, a logical one. Given the weakness in my left arm, my right arm is working harder to compensate. I've seen this show before, in my legs as well as in my arms. I'm not sure I know what I was doing yesterday that wore on my so much, but there it is.

I also have an illogical answer for this situation. ALS hates me. It hates me so much that when I have a good day it will do something, anything, to remind me of who is in charge of my body. And it ain't me. I anthropomorphize this disease on occasion. It helps me dislike it even more.

How I spend my day will depend on where I place my focus. If I focus on the pain in my arm, my day will not go well. If I say "to hell with it", and keep going in spite of the pain, it could be a very good day today. I have things planned, things I want to do. I am going out this evening to an event where I will get to see many of my friends. I'm going to stop for Sushi along the way. I'll be using my power chair, so if someone suggests going for a beer afterwards, I'm not worried about driving. My only concern would be wheelchair access at the pub.

I plan on having a good day. As Micheal said this morning, there is strength in my heart as well as in my arms. I don't get a lot of good days, especially as I slide into home base. I'm like a shattered bomber trying to land after getting all shot up in a night raid over Berlin during WWII. Nothing on me works all that well, and most of me is damaged pretty badly. So it has a lot more to do with attitude today, and pretty much every other day.

There are some who mistake this attitude for wellness. They see me active, happy, enjoying myself. They assume it must not be that bad, that I have a long time yet to live. What they don't know is that the effort of having a good day is, in and of itself, monstrous. It would be much easier if I just laid in bed, looking sick, feeling rotten. But what kind of life is that? I choose to enjoy, for as long as I can. Soon enough that will end. I would rather that not happen today. I work hard at being happy. It's worth it in the end. I get a better life.

Wednesday, 10 May 2017

Bank Balance Fears

I have to confess to being a bit frightened right now. For the last 5 months I have enjoyed seeing the balances of my bank accounts and feeling a certain security in knowing that I had money. That money meant I could buy things, enjoy things, travel, be generous with my children and grandchildren. It also meant I could pay off some past due bills, like my overdue condo fees. So I've been doing just those things.

Then, yesterday, I booked a trip to Scotland and Ireland with David. Once again he is taking me, along with my wheelchair and commode chair, on an adventure, this time a driving holiday of a week in each place. David put the tickets on his credit card; I am to email him the money for my part of the trip today. This will make a substantial dent in my bank balances, especially my travel fund balance.

It has been a terrific year so far this year. I've been able to pay all mys bills, buy whatever food I wanted to eat, buy decent wine kits, travel on road trips and adventures to resorts far off. I've been able to entertain, to take my grandchildren toy shopping when they visit, to offer my children support that might allow them to come and visit me. I have loved every minute of it.

Alas, this must come to an end. This trip with David will be my last major expenditure. I know there are so many other things out there. I wanted to go on a cruise. I would like to do at least one more road trip. I had hoped to drive the Dempster Highway once more, this time all the way to the Arctic Ocean on the new highway from Inuvik to Tuk.

On the plus side, I have never been to Ireland, north or south. While I have been to Scotland, I've never been north of Edinburgh. I've long wanted to get up into the highlands, long wished to see the Spey River, Loch Ness, Loch Lomond. I've dreamed of driving about the soft, green hillsides of Ireland, round old roads, stopping by pubs where Gaelic is the language of the day. Now, with David's help, I get to do this.

My bank account is draining. That is scary. My life is draining. That is even scarier. I find myself, once again, worrying about which will run out first, money or life. In the end it doesn't really matter all that much. Given my loss of arms and upper body, I won't be able to travel all that much longer, at least not without substantial medical support. No, it looks like this is it. So, while I may be afraid to look at my bank balance, I'm more afraid to thing about what I will miss if I consider money alone. I don't have much life left. I want to live it as much as I can.

Tuesday, 9 May 2017

Betty's Run... Again

It's that time of year, the running and fund-raising season. Mine is Betty's Run for ALS. As in years past, I am seeking donations and people to do the run with me. I almost feel guilty about asking again. After all, according to prognosis, the run in 2015 should have been my last. I'm supposed to be dead now. I'm not sure if this continued living is a good thing, or if people simply think I'm running some sort of scam.

Of course this is humour. I know full well what this disease can do and the vagaries with which it does it. There are many good things about being alive, not the least of which is my ability to get out and do this kind of fund-raising for ALS. As my son says, just because there's no ice bucket doesn't mean we can forget about this terrible scourge.

The issues is one of donation fatigue. With so many organizations, both large and small, vying for donor dollars, it's hard to be heard above the din. Cancer is the big one, especially breast cancer. Childhood diseases are way up there too. Nothing like a sick kid to get people out and running. Then there are the other rare illnesses, the ones with long names and difficult diagnoses. All of them are asking you for money.

So how do you decide where to put down your donation? For me, it's simple. I have ALS. That's where all my money goes. For those immediately close to me, it's also fairly simple. They know what ALS is doing to me, and they support me, both in fundraising and in life. The problem is that the further away from the source you get, the more likely you are to see other things as more important. After all, curing cancer is way up there, since there are so many affected by it.

I'm not going to go into the logic and detail of why one disease should get relatively more than another. It's an unfair and unkind contest. Instead, I am going to ask, once again, for another year, that you support me and Team Terrific in Betty's Run for ALS. Click here.

Monday, 8 May 2017

36 Hours In Bed

I didn't write yesterday. The reason is very simple. I didn't get out of bed yesterday. I stayed in bed from Saturday night until Monday morning, spending most of my time sleeping. It wasn't a planned event. I went to bed on Saturday, after an evening of looking at pictures, reminiscing with myself, and drinking Gin and Tonic; it was about midnight when I went off to try and sleep. I took my pills, including a Zopiclone, but it was slow cutting in, so I think I finally slept sometime around 2:00 AM.

At 10:00 AM my HCA came, the one who fills in when Micheal or Kathy can't be here. She arrived early, about a half hour early, not that it mattered a great deal. When she came in, I found myself having great difficulty shaking off the grogginess of the Zopiclone. It happens sometimes. So I told her I just wanted to sleep. She went about tidying up things and making me a sandwich, leaving it wrapped on the dining table. Then she left.

The next thing I knew, it was 3:00 PM in the afternoon, and I was still sleepy.  I didn't fight it. I just lay back down and went to sleep. From then, I would wake up intermittently, needing my jug. There was no other biological urge. So I slept some more, until at about 6:00 PM I woke up enough to think about what I was doing. At that point I said "to hell with it", and decided to stay in bed for the rest of the evening and right through until this morning.

It's been an interesting experience, spending 36 hours in bed doing nothing but sleeping on and off. First of all, I feel no better for it. Getting out of bed this morning, I feel the same tiredness I feel all the time. There is no reward of refreshed body. Also, nobody seemed to notice, or care that much, that I was in bed all day. I would say the worst outcome of this is that I didn't feel at all bad or uncomfortable, perhaps quite the reverse. It would be easy for me to spend a lot more days like this, doing nothing by laying in bed. I don't know that this is a good thing.

My experience with ALS is that once I stop doing something, I am unlikely to go back to it willingly. It becomes too difficult. So if I stop getting out of bed each day, at what point will laying in bed become the norm, and moving about will become the difficult? Still, it was sure easy, just laying there, drifting in and out of sleep. I hate to say that I liked it, but I liked it. I didn't want to get up this morning either.

Saturday, 6 May 2017

Spring, For Today Only

I've been up and our of bed for all of two hours, yet here I am ready for a nap. There is a certain unfairness in the exhaustion of ALS. I recently saw a quote where it said people with ALS use 3 to 5 times the energy to accomplish the same task as healthy people. I cannot verify the source for this claim, but my own experience certainly supports it.

Today is a perfect day for being alive, being out and about. The prairie sun is shining strong, warm and bright. There is a light breeze, just enough to cut the heat every now and again, yet not enough to cool completely the touch of heat that comes with just enough sun. Spring is here in Calgary. The small birds are back in the tree outside my window. The deciduous trees are in bud; in just a few days all about me will be a riot of greens of every possible shade and hue. People are out in shorts and t-shirts, revelling in their ability to stroll neath a clear blue sky.

Even I have joined the mood, wearing shorts and a T-shirt for the day. I spent the first hours of my day sitting on my patio, absorbed in the sights and sounds all round me, looking upward into a blue Alberta sky worthy of a song. Micheal brought my coffee to me, along with some Macaroni Salad and grapes. It was a picnic on the patio. From there, I could watch the world go by, although participation is beyond me right now.

Spring is a fickle thing in Alberta, as are all the seasons. It is only in Calgary where I have heard the term "late summer snow storm". Tomorrow temperatures will tumble. The rain will set in. For the next week or two, temperatures will remain cool, with the threat of rain, or even  thunder storm, almost constant. Today is the day to enjoy it, to enjoy life, as much as you can. Even if it means taking a nap. Not even ALS can change the weather. I have to live with what I get, and get what I can out of living with it.

Friday, 5 May 2017

Silver Linings And Clouds

It has been suggested to me of late, more than once, that perhaps I have been writing a bit much, perhaps a bit too graphically, about some of my bodily functions. I get it. This is messy, yucky stuff. Who wants to hear about that. Except, of course, that messy, yucky stuff is what living with ALS is all about these days, given that my core and arms are losing or have lost so much. It is the core muscles that control or aide in so many of those bodily functions.

It has also been suggested, more than once, that I might write a bit more about some of the good things going on in my life. There are, after all, so many good things happening for me in terms of support, family, friends, travel and life in general. This I can understand. It falls under the category of "nobody likes a crybaby" or "laugh and the world laughs with you."

The problem is that my life is largely dominated by difficulty these days. Even when nice things happen, they so often happen in the midst of challenge. It is in my nature to more note the challenge than the ease, more note those difficult things rather than the nice things. It's just who I am. As both my daughter and my brother have said of me, I can find a cloud for every silver lining.

Yesterday was a great example of this. Without going into the kind of gory detail which constitutes too much information for so many of you, I spent three hours on my commode chair trying to pass a particularly hard stool. Three hours, trying to poop. The one blessing in all of that difficulty is that my commode chair has wheels. At least I wasn't stuck on the toilet. I could move out of the bathroom and sit at my table, waiting for action to take place, then do a quick roll back to the toilet as needed.

The other nice thing that happened was that Kate came over to visit. Unfortunately her initial arrival took place in the midst of my three hour tour. She took that moment, and wisely so, to head over to the mall to do some shopping. She came back when I sent her the all clear. Then she did what I enjoy most, sat and chatted for a bit, did some sewing for a bit, tidied a few things up. As she left, she took my GPS and Back Up Camera, along with my truck, so Phil could put it together for me this weekend.

You see, there are good things that happen to me. So often, though, they seem wrapped in difficulty. There are silver linings. I just happen to have a cloud for every one.

Thursday, 4 May 2017

My Arms Have Gone Away

I am struggling with a deep depression as I write this post today. My arms have been failing me for the last year, the last six months at an increasing pace, towards a tipping point where a great many things would become impossible for me. I seem to have passed that tipping point. Today, while getting dressed, I was unable to sit up solo. My HCA had to help me sit up straight. In addition, I was unable to maintain that position unless I held onto my M-rail, lest I tip and tumble backwards.

Yesterday, while trying to transfer from the bed to my wheelchair, I had some issues with the guard rail on my chair snagging the back of my jeans. No problem, just a slight forward lean, the thing I have done hundreds of times before. Only this time, I kept on going, right down to my bedroom floor. It wasn't a long drop; I was relatively unhurt. It just hurt my pride, or rather confirmed in my spirit what I already know is going on.

There are so many small things I can no longer do. I can't pick up a full laundry hamper from the floor. That's why I keep one atop the taller hamper in my bedroom, so I can just slide it into my lap. If there is one on the floor, and there usually is one on the floor, I must first empty about half of the laundry from the basket, lift it, then pick up the laundry and return it to the basket. I couldn't lift my bag of groceries the other day; I had to half empty it from the back of my power wheelchair, then untwist it and lift it onto the counter.

Transfers in general are impossible without assistance these days. Yesterday's episode with the transfer board and the subsequent fall demonstrate the risk and danger. I'm now using my sling to both get into bed and to get out of bed, unless I have someone helping me who is aware of what might happen. Even Micheal, my HCA, has trouble with the transfer process these days, although Kathy, my other HCA, seems to do it just fine. But doing it solo is now fraught with difficulty and danger.

There are so many things; doing wine, roasting a turkey or even a lamb of leg, wheeling over the carpet in the spare room, moving my table and chairs, picking up stuff from the floor, arranging groceries in the pantry or freezer. It's all becoming too much, well past the abilities in my now totally weakened arms.

The next marker point for this process is when it becomes too difficult to life a cup of coffee or a glass of wine. I hope that's a while off yet. That will be the worst tipping point of all.

Wednesday, 3 May 2017

Bladder Clinic

I went to the Bladder Clinic yesterday. It's not as exciting as it sounds. I've been getting bladder infections on a persistent basis since last October. We, the various doctors and I, do not think this is a good thing. We need to find out why. While, as with all things ALS, there is not certainty, we think we know what is going on.

First of all, it is definitely ALS related. This is not simply a function of aging or some other side effect of life. What the urologist thinks is happening is that when I pee, my bladder is not emptying completely. This is a function of two things combined. First of all, I am sitting down all the time, even when I pee. My bladder is resting in there, not draining to the bottom as I stand or walk. So there is a small bit of urine almost permanently captured in there. Second, my core muscles have failed enough that I cannot squeeze out my own bladder anymore. That means the small amounts that remain can be bigger than small.

At first I thought this had to do with my condom catheters. In fact I was certain it had to do with them. The urologist doubts that. It is possible, but unlikely. What is more likely is that small amount of urine remaining in my bladder is prone to developing bacteria, the kind naturally found in the human gut. So my bladder is very nicely providing a warm, moist, nutritious habitat for nasty bugs.

The solutions are much more complicated. Basically it falls into three choices. One: learn to use a Foley catheter, one that reaches well into my ureter, one that will "tickle" my bladder into squeezing out any remaining urine. I would have to do this every time I go pee, or at least fairly often. Two: have a permanent, in-dwelling catheter attached directly to my bladder with a tube poking out of my lower abdomen. It would have a permanent bag attached. If I wanted, or needed, to take the bag off, I would have to put a clamp on the tube. Three: live with getting infections periodically and keep a steady supply of antibiotics, really powerful antibiotics, on hand for when they start up.

I've decided for option three. It is the least invasive, least intrusive method. It is also the most convenient. It's not as if this is going to be a long term issue, at least not for me. These days I choose comfort and convenience over anything else. It sucks, being a chronic antibiotic user. This may be what takes me, an untreatable, antibiotic resistant infection. But something's going to take me, so I might as well be comfortable along the way.

Tuesday, 2 May 2017

Digital Pictures

I bought one of those digital picture frames yesterday, the kind where you can take the photos off of your camera or computer and it will display them as a slide show, with background music if you want. I brought it home, plugged it in, and immediately transferred a couple thousand pictures onto a USB stick, put it in and started watching pictures.

Pictures of my kids. Pictures of sailing. Pictures of mu adventures in the UK, Europe, the Middle East, around the US, even to South Africa. My digital picture file goes all the way back to 2002, when I was just 47, right after my first heart attack. My children are mostly teenagers then, except Ricky, who was 12 and almost a teenager. I am definitely younger, stronger, but I still seemed to have a decent sized belly, especially when the picture is at just the right angle, and my body is slouching.

What does it mean, that I spend so much time thinking of the past, remembering those days with my children, the family adventures. These mean even more to me that the large amount of international travel I have had in my life. I look at these pictures with so much love, such tender memories. I live in this place of seemingly endless sentimentality.

They say when you die that your life flashed before your eyes. I see absolutely no sense in waiting until then. I want that life to not flash before my eyes, but to roll slowly, a giant, epic motion picture, with drama, excitement, love, pain. I want the movie of my life, the slideshow of my children, the photographs of adventure all to be there, so I can see them often, remember them much, and hold them in my heart daily.

I have had a wonderful life. These pictures remind me of that. I only wish I had others, from when my children were truly small, from when they first learned to walk, to talk, to laugh. I wish I had them from when they played with each other in the back yard, climbing the fort. I wish I had the pictures from when they rode their bikes, played on swings, jumped in the snow.

The pictures I have are wonderful. But they only tell the story of the last 15 years. I want more, so many more memories. I suspect I will never get them.

Monday, 1 May 2017

ALS Awareness Month

If you are on Facebook, or engaged in US social media in any way, it is unlikely you will get by the next few weeks without being told the May is ALS Awareness Month in the USA. You will likely see Facebook posts and posters, frames, memes, heart rending or compassion building news reports, special bulletins, whatever. Or, you may miss it all. It may drift by you in the cosmic flood of online and direct media, buried amongst the millions of other Awareness Months or special Days.

Friday is No Pants Day. Will that garner more attention that ALS Awareness Month? I suspect so. The idea of seeing pretty people in their underwear is sure to peak prurient interest. A barely functional human being, kept alive by tubes and wires, supported by care workers and family for all of his or her waking day; there's nothing attractive about this. It's just not sexy.

For me, and for so many around me, every day of every month is ALS Awareness. I decline the opportunity to fuse my message into a single month of commentary. There are no days, no times, better than this day, this time, to tell someone you know about someone else you know with ALS, what it has done to his or her life, how it is an "orphaned" disease, how researchers know so little because we spend so little on research.

You may be surprised at the level of disinterest or lack of knowledge you encounter. After all, ALS is not common enough to attract daily attention. It sits there with a hundred other human ailments, disabilities, syndromes, diseases. The emotional space for learning and caring about something so rare as ALS is limited, until it touches you personally. Why would you care about ALS when you have almost certainly been touched by cancer, either in person or in a person near to you? Why would respond to ALS having seen the pathos of childhood diabetes, leukaemia, liver disease, and on, and on?

It's a crowded compassion marketplace out there. The world has a great many ways to take the lives of we simple creatures. We will never prevent death. We will never eliminate disease. Our task, as cruel as it may seem, is to invest as best we can to ensure quality of life until life ends. We need a cure for so many things. ALS is just one of them.

It's good to see ALS Awareness Month in the US. Perhaps it will do more to make people aware of how this disease destroys lives, families. My wish that it is more than a simple meme on Facebook or a tweet on Twitter. The ALS story most be told daily, every day. It must be proclaimed on the mountain tops, given to every town crier, screamed to the gathered masses.

Everyone knows, and fears, cancer. Most people don't know, and don't fear, ALS. It's rare. It could never happen to me, right? Then, it does. Then you become aware, in that moment, your ALS awareness moment. Then you will want treatment. Then you will want a cure. Until then, I will continue to tell you what it is like to live with ALS. Share this blog, this message, this awareness with everyone. First comes awareness, then research, then treatment, then a cure. We are on step one.