Sunday, 23 July 2017

36 Hours Of Sleep

I'm out of bed, finally. I've been in bed since 11:00 PM on Friday. I stayed in bed literally all day yesterday, sleeping. Yesterday evening I sort of woke up, sort of. I didn't have the energy to get out of bed at all. Come 11:00 PM yesterday, after a full 24 hours sleeping on and off, I went back to sleep again.

It was about 8:00 AM when I finally awoke this morning. Even so, I was able to doze off and on until Home Care arrived at 10:30 AM. Sunday is one of my three sleep in days each week, where the Home Care Aide arrives at 10:30 AM instead of 9:00 AM. Even so, all three of my HCA's knows that coming late on the early days is not considered a bad thing. I am always ready to sleep in.

What I was not ready for was my exhaustion of yesterday. There is no explaining it. I've been getting decent nights of sleep lately. I've not been overdoing it in my days. I will admit to having had a bottle and a half of wine two nights running, not that this is an onerous thing for me. All in all, I'm fairly sure that my exhaustion has not been related to something I am doing.

There is the very real possibility that I am fighting another low grade bladder infection. This is how it goes when I'm in this situation. My body is even weaker than usual. I am more tired than usual. I've had little sign of the incontinence which goes with a bladder infection, so I have my doubts there too. I don't want to slap an antibiotic into my system as a preventative; it's another drug I don't need for something unclear in origin.

The best way, perhaps, to deal with something like this is to listen to my body, to rest as it needs rest, to eat as it needs sustenance, to stay hydrated. I'll try getting out for a bit today, to be a bit active. Then, if I am exhausted tomorrow again, I'll go see the doctor, even with the one week lead time for an appointment. Or maybe I'll just go to the hospital again. They can test and treat me right there.                                                      

Friday, 21 July 2017

It's My Birthday

I've waited, intentionally waited, before writing today. You see, today is my birthday. Today I turned 62 years old. Today was a day I never expected to see, never thought would arrive for me. When I was 57 and newly diagnosed with ALS, I would not have given a plug nickle for anything past 60, and not much more for 60 itself. The statistics said it. I had ALS. I had been symptomatic for at least two years. My life expectancy, at best, was 36 months. That's what the neurologist said.

The problem is that life expectancy is all about statistics. My statistic of one has not followed the pattern of the norm. My progression has been slower than expected, causing me to endure this disease for longer than expected. So this birthday is both a marker of an unexpected gift, and an unexpected curse. It seems I will, once again, outlive my money and my plans.

For some people, each and every birthday is something to celebrate. This celebration of birthdays is not something universal, however. Our modern celebrations have more to do with our wealthy society than with any real tradition of celebration. On top of that, a great many cultures celebrate the births of boys while mourning the births of girls. I am fortunate to have been born in a time and place where birthday celebrations happen.

If anyone should be congratulated for this day, it should be my Mom. She is the one who carried me for nine long months, the last two of them deep into the heat of summer. She is the one who delivered me in a hospital room populated by nuns who had never had a child telling her what to do, and a doctor who was really only there for the final event. Birth in the 1950's was fully medicalized, leaving no respect for the woman in charge of delivering herself a child.

I call my Mom on my birthday. I did that today. I thank her for going through those nine months, that tough delivery, and being there for the rest of my life right up until this day. If anyone has a right to be congratulated, it is her. If anyone should be celebrated it is her. All I did on this day was get hauled out of a warm, moist womb into a cold, sterile world, once there to be slapped such that my first utterance was a cry of pain.

So happy birthday to me. I shall celebrate quietly, with a glass of wine and a plate of pasta. I'm not a cake fan, perhaps I might have an ice cream bar. I will watch a movie or two. I will go to bed at an indecent hour. In other words, today will not be all that different than other days. I'll just have completed another orbit around the sun, as so many have done before me, as so many will do after me.

Thursday, 20 July 2017

Upside, Downside

Each morning I awake. From that instant on, my day is filled with ups and downs, both literally and figuratively. There's the sling. Both up and down. This morning there were no events with the sling, which leads me to believe that the last couple of mornings were events driven by my consumption of beer. Will this stop me from drinking beer? Not likely. What I will have to do is ensure I used the toilet before bed on those days when I drink beer.

There are lots of other upsides for each and every day. Here is the upside list. It's longer than what is presented. This blog has to have a certain brevity to it.

UPSIDES

  1. I woke up today. I get to see another day of the world go by. I get to enjoy another glass of wine, another meal. I get to feel the sunshine, laugh at something, continue to hope for love.
  2. I got to use my sling without filling my underpants first. There was no mess today. No muss, no fuss. I was clean without needing a shower.
  3. Sam just folded my laundry. It is one less thing for me to do, so today I can focus on making spaghetti sauce with meatballs. I'll have that with rigatoni tonight, likely tomorrow night too.
There are plenty of other upsides. I just wanted to express a few of the good things that start my days. There are also downsides to every day, difficult things which enter my life, things over which I have no control.

DOWNSIDES
  1. I woke up today. It means another day of dealing with pain and struggle. It means I get to witness more loss in my muscles, more challenges. The wine glass is getting heavier. It's getting more difficult to get outside in the sunshine. It's another day in which I will discover disappointment.
  2. My neck is cramping today, making it difficult to hold my head up straight. This would be less of an issue if I had stayed in bed, less of an issue if I simply laid flat for the day.
  3. It's cold outside today. I put shorts on this morning, or rather Sam put shorts on my this morning, thinking I would not be going outside. Now I will either stay indoors, or change to long pants.
You know, I can find both good and bad things in every day. Sometimes the good outweighs the bad. Sometimes the bad outweighs the good. What I know is this. One day I will realize that the downsides have been more than the upsides for a long time. That will be the day I decide. For now, not today. There's plenty of upsides.

Wednesday, 19 July 2017

A Messy Change

I look at changes in the way my body works very closely. I work hard to identify if they are are part of aging, a part of normal life, or a part of ALS. Sometimes it's a part of all three. The last couple of mornings, on transfer from bed to sling, my bowels seems to have felt the need for immediate release. There was nothing I could do to stop it, nothing I could hold. I didn't have the muscles needed. The sling squeezed and forced the necessary openings; stuff came out.

My first thought is beer. For both Monday evening and Tuesday afternoon, beer represented a reasonable portion of my non-dietary intake, Kilkenny Irish Ale on Monday and an Milestones Red Ale on Tuesday. Beer, especially draft beer, seems to make my tummy rumble. Perhaps it is time for me to switch from draft to bottled beer. Perhaps I need the pasteurization.

Then there is the dietary component. Both days consisted of irregular eating. On Monday it was wing night at the pub. Then, after a night out, I came home and ate a half sandwich Kathy had made me earlier in the day along with a small can of smoke oysters. Kathy said she though the oysters might be the culprit. Yesterday I went to a matinee at the movies with Tonny where I consumed a large bag of popcorn. Then I met friends at Milestones for beer. My dinner was ColeSlaw and canned Ravioli. Okay, not my best dietary efforts. Perhaps it was the popcorn.

The worst case scenario, from my perspective, is loss of muscle tone in my perineum. I still have sphincter control; that muscle is not affected by ALS. It's the other muscles "down there", gluteus muscles, abdominal muscles. Those are the ones I need to aid in both the process of holding in and of pushing out. When the sling spreads my cheeks, those muscles are no longer strong enough to come to the aid of the one muscle holding back the mudslide.

It's another thing I will have to learn, another change. My hope is that it is just the beer or food. My fear is that I may have to make another adjustment in my routine, going to the toilet at night as well as in the morning, or just going at night altogether. I wonder what the sling will have to say about that!

Tuesday, 18 July 2017

Tough Tuesdays

While Monday may be one of the best days of my week thanks to the ministrations of Kathy, my HCA, Tuesday is not typically a good start. First of all, on Monday's I get to sleep while Kathy cleans my apartment. I wake up to a nice, clean smelling home. Second, Kathy arrives at 10:30 AM on Monday, but arrives at 9:00 AM on Tuesday. This is a result of an experiment on my part which has become permanent. I wanted to try getting up earlier. Kathy was available and now I don't want to lose her by changing things.

So I live with tough Tuesdays. Today was tougher than most. Last night I went to bed late and slept poorly. I was off to a rough start right away. Then this morning my bowels decided that being in the sling was close enough to being over the toilet. I spoke to them harshly, using all the inappropriate language I could, reminding them that I was still wearing underwear. Alas, all to no avail. By the time I made it to the toilet, I was a shitty mess.

Once again, Kathy help rescue me from this mess, helping me get my underwear off, helping clean up the mess. My bidet spray helped a bunch, as did my shower; it was the clean up of underwear and commode chair where I needed some help. She takes these disasters completely in stride, a part of her daily work, without making me feel bad or helpless or anything like that. She often comes up with good reasons for why these bad things happen to me.

What make this Tuesday even more challenging is that Kathy is now off for two weeks, on holidays, headed to see her family in Edmonton, then in Radium. I have this deep and selfish worry about who will take over for her, who will fill in the gaps next Monday and Tuesday. On top of this, Olga is away this weekend, on vacation with her husband and children. So I have holiday fill ins for Friday, Saturday, Sunday, Monday and Tuesday. I wonder what I will eat!

Monday, 17 July 2017

Welcome To My Home

A number of people have asked, over time, if I could talk about the layout of my apartment, or perhaps do a video tour. I've done just that. The video today is about 8 minutes long and covers my whole apartment, from the dining table where the magic happens to the Door of Doom protecting the wine rack. I expect there will be questions about what is what. Feel free to ask away.

Welcome to my home.



Sunday, 16 July 2017

The Price of Pride

I am a fiercely independent man, especially since I left my wife. When that happened, I promised myself I would never again subjugate myself in trade for some falsely perceived benefit, nor agree or conciliate when I differed in position or attitude. I committed to being me, all the time. It was time for me to say what I thought, regardless of outcome; to be who I was, regardless of response.

Of course this attitude has its downside. I have, more than once, said things which set off a firestorm. My refusal to give up a female friend let to the breakdown of my last relationship. My willingness to express my attitude has most certainly upset more than one person. Yet I have found that those who like me, really like me; and those who aren't sure become certain in a hurry. It saves time, something that I don't have a lot of.

Yesterday is a good example of the price I pay for maintaining freedom. I declared that I would not ask for help, at least for a while. Asking for help puts the person asking at the will of the person giving; it creates a dependent subjugation. These days my emotions are fragile enough that I just don't want that in my life. If you offer, I will accept. If there is no offer, then I will have to decide how I can do it myself, or if I need to do it at all.

Costco. I went yesterday. By myself. I took the bus there, shopped, and called a wheelchair cab for a ride home using my Access Calgary Extra card. That card subsidises cab rides up to $56 a month as long as I pay the meter charge of $3.60. Yesterday the ride was $21.90; I paid $3.60, which is essentially bus fare, something I pay with any Access Calgary ride.

Getting there was fairly easy, just one transfer. Shopping had its challenges with lifting heavy things onto my lap and negotiating the crowds in my power wheelchair. Checkout was a breeze; the checked me out at the service counter thanks to my wheelchair. Getting home simply meant waiting for the cab. Once I was home, however, the real work began.

First, it was getting the boxes of groceries up to my apartment. I managed it, barely, in one trip. It took some doing to balance two large boxes on my lap, holding them with my left arm as I drove with my right hand. I made it, thankfully, with no loss of contents. Unfortunately I missed one of the turns just a bit, tearing off my side pack in the process. It's another thing to fix; I need a sewing machine. I am fairly sure my HCA can help with this, or the ALS Society. It will happen.

Putting the groceries away was the real challenge. Having taken them down from the shelves or out of the bins at Costco, I now had to put them high up on shelves or into the freezer here at home. I didn't realize how much it exhausted me until I slept in today. I ended up with 16 hours of sleep!

I need to be aware of my "one thing per day" rule. Doing laundry is one thing. Folding and putting away is another. Going to Costco is one thing. Putting stuff away is another. The freezer stuff has to go away, but most of the rest could have waited until today when I had help from an HCA. I wore myself out, needlessly. Help was on the way, if I had bothered to wait.

Today I am doing laundry. I am committed to not folding it tonight. I know Kathy will do that tomorrow. In fact she would do the laundry too, if I asked. I just don't want to ask anymore. The price for that is this. Exhaustion. Everything has its price, even my pride and independence.

Saturday, 15 July 2017

Need And Sorrow

I have decided not to ask anyone for help for anything, for a while. I just feel like I am constantly asking for help, begging for support, needing, needing, needing. If I want to get in the truck, I need help. If I want to do something on the BBQ, I need help. I ask for help with my laundry. I ask my guests to help in the kitchen, to cook, to clean. I ask my friends to take me places, to pick up things, to help with repairs in my home. I ask. I ask. I ask. I get turned down, or I feel like people are helping out of some sense of obligation, some sense of pity.

It is the most difficult thing with this disease, this constant need for more and more help. I no longer dress myself. I no longer clean my own home. I no longer visit friends in their homes. Everything revolves around my inability, my need for concession, my need for help.

Each day is a bit of grieving for a loss, sometimes a big one, sometimes a small one. This grief, this sadness, never goes away. This is not depression; it is sorrow. As the song says "I feel like a part of me is dyin'." Except this is no song, this is my everyday reality. A part of me actually is dying. With each of these small deaths, I need more help. I become more needy; physically, emotionally, financially.

What have I become? What kind of man am in now, afraid of so much, asking for so much? My image of myself has become so lost in this cruel reality, my mind and spirit detached from my failing body. I am not depressed right now, not over this. I am just sad at what I have turned into. I look in the mirror, seeing someone I don't know, someone I don't recognize. I don't know that person, not at all.

So, for a while, I am simply going to throw my needs into ether, asking nobody, expecting nothing, waiting for nothing. I will do what I can. What I cannot do, I will find other ways of doing, other approaches to living, other ideas to get what I want. This is as good as it gets these days. Until something else is taken from me. Then, I will need even more. Then I will be sad again, lonely again, afraid again. And I will have to start all over, again.

Friday, 14 July 2017

Truck Service

I'm just back from taking my truck in for servicing. The morning was so tightly scheduled that I didn't even have time for coffee, but I am enjoying one now. I am, however, exhausted from the effort of getting in and out of the truck, twice. Driving was, as usual, a pleasure, a relaxation. I love my truck. I love driving it. I love having it. When I lose it, that will be a sad day for me. I may keep it longer, much longer, than I can drive just so others can drive me somewhere in it.

To say that "I" took my truck in for servicing is a bit of a misrepresentation. While I drove and paid, I could not have done it without the help of my friend, Ryan. As usual, getting in and out was the real problem today. I am no longer strong enough to even position myself properly in my seat. I can't move my hips against the friction of the lift seat or chair cushion. It's a function of the loss in my upper arms and shoulders. I need help.

I paid very close attention to the effect of my driving, my ability to control the truck, the level of exhaustion in my lower arms and hands, as well as my upper arms and shoulders. I noticed a few interesting things. First of all, since I did not get square into the seat, I was at a bit of a twist for the whole of the drive. I didn't bother saying anything to Ryan; the drive was all of 20 minutes. I can take it.

What was more interesting to note was that I was almost unable to maintain that twist, my core muscles weak enough that I had to relax back to a somewhat offset driving position. At first it was annoying, but I got used to it. Were I on a longer trip, I would have asked Ryan to help me square up in the seat.

It was also interesting to note the increase in my slouch vis a vis the seat of the car. Once again my core muscles are failing at their task. Fortunately the truck seat takes away most of that problem; my truck seats are the most comfortable vehicle seat I have ever had.

Then there is the aftermath. I can feel it in my arms. My hands are a bit shaky; I am not sure if that is the driving or the Starbucks coffee. I am tired; then again I am almost always tired, especially at this time of day.

All in all, I would call it a success. It has been a month since I last drove my truck. With assistance getting in, I was able to safely drive through city traffic without incident. I wonder how long I can keep going?

Thursday, 13 July 2017

Post Clinic Depression

It's official. I am living with a nasty, ugly, debilitating, destructive, cruel illness. I have ALS. That was confirmed, once again, yesterday at the ALS Clinic down in the South Health Campus here in Calgary. I'm not really sure why I go to the clinic anymore. Pretty much everything they tell me is something I already know. The only real outcome is adjustments to medications, something which could just as easily happen in the office of any family doctor.

There was a medication adjustment yesterday. I take something called Efexor, also known as Venlafaxine. This drug is actually an anti-depressant, however it is also very effective in handling some of the more visible symptoms of Frontal Temporal Dysfunction. This is the part of the disease which leads to uncontrolled emotional outbursts; for me that was uncontrollable crying. It also helps with impulse control, not normally a good area for me regardless.

The increase this time had nothing to do with FTD. These days I am struggling with good old fashioned depression, situational though it may be. So for the first time we have increased my dosage of Efexor to a level suitable for treating depression. Prior to now I was on what might typically be considered somewhat below a half dosage. The typical dosage for this anti-depressant is between 250 and 300 mg per day. My dosage is 112.5 mg per day, and that's after increasing it due to a behavioural incident last year. We are moving it to 150 mg for a couple of weeks to get me used to the increase, and then to 187.5 mg after that. This is still a fairly modest dosage. I hope it will help with the worst of the depression, however not living with ALS would be better.

My weight was another focus in the clinic yesterday. After my complaints about diminishing arm and leg muscle mass, the folks at the clinic wanted to ensure I was eating well and maintaining my weight. I am, and I am. My weight has been constant for a couple of years now, other than a scare last January were I was down a bunch. I have it back now. Unfortunately the weight I have is all round my belly, not in my arms and legs. My appendages continue to shrink; my belly continues to grow. My weight remains constant, or at least nearly so.

Yet another focus was my respiration and lung volume capacity. As it has over time, my lung volume continues to diminish very slowly. When diagnosed, I had 85% of normal lung capacity. This is now down to 79%, not much of a decline after the initial slide. The more significant issue is increasing weakness in my diaphragm and general respiratory system. I run out of breath more easily these days.

In discussion with the respirologist, I suggested that after I lose my arms, I might succumb to Bulbar ALS. She said she didn't think so. I asked what it might be that would finish me off, if not that. She said I was more likely to die from respiratory failure. She didn't express a timeline, but I am failing in that regard so it will come eventually. I am not sure I want to wait it out. We'll have to see how it looks when I get there.

The final conversation of the day revolved around my truck. I was telling the neurologist how I was thinking about selling my truck, since I cannot get into it, and buying a van that I could get into. He suggested that the logistics of selling the truck to buy a van might be a lot of work from which I wouldn't get a lot of benefit. His intimation was that I would not be driving for as long as I thought. I'm not surprised. My shoulders and upper arms are just about done. My fingers and lower arms will stay with me for a while, but I need upper body strength to drive that truck.

The conclusion on the truck was that I not sell it, that I keep it and ask friends to help me get in and out. When I am completely unable to drive, then I should simply sell it and accept that new reality. Either that or make my last drive through the Rockies and miss a turn along the way.

There is nothing in all of this that I did not know. There are no surprises here. As my neurologist said to me a couple of years back, "If you think it is happening to you, it probably is."

Wednesday, 12 July 2017

Access Calgary

I've got about five or ten minutes to write. Then I have to go pee and get ready to go to the ALS Clnic. This entails putting shoes on, changing over to my PWC, then going outside at 12:20 at which point I will wait for up to 20 minutes for the Access Calgary bus to arrive. I find it frustrating that I am compelled to give them a 20 minute pickup window, but I am told if I am not out there by 12:20 and the bus should arrive, it will not wait for me. As well I will in some other fashion be penalized.

Sure, there are lots of reason which might impact their arrival time. There are potentially other passengers, some of whom might be difficult. After all, it is a service for handicapped people. There is also traffic to consider, especially since the Access Calgary service is point to point; you can't calculate traffic without a consistent route. So I understand they might need a bit of flexibility. But why not me? Perhaps I mean to get downstairs at 12:20 but I have to go pee at the last minute. Perhaps the elevator is busy, or jammed, or whatever. Perhaps I have trouble with my shoes.

Of course the theory is that I can plan for all of these things, allowing extra preparation time so I can be ready when they finally arrive. But if you know anything about ALS, you know that my body just doesn't work that well. On the other hand, none of the other passengers on this share service have well functioning bodies either. It is, after all, a handicapped service.

So why am I not taking my truck? The simple truth is that I have nobody to go with me to the clinic today, and I can no longer get in and out of my truck without help. If there was somebody here, Access Calgary would not be needed. But I live alone. I am independent, sort of. And that means finding different ways to do things when I need help.

Oops. It's 12:02. Gotta go.

Tuesday, 11 July 2017

Nothing

It's raining outside.

I've got nothing to say.

I've got nothing to do.

I don't even know why I am still here. I should have left long ago.

I think I will go back to bed.

Monday, 10 July 2017

Continuing Exhaustion

I'm tired, lethargic. I continue to struggle with exhaustion, my body demanding sleep while all the while do little but sit in my wheelchair. I want to do something, but I don't know what to do. My fingers are tired. My hands are tired. My arms are tired. I can barely lift them.

Maybe that's it. Maybe the weakness in my arms and body is at the point where even small moves require large amounts of energy. I know that typing wears out my hands fairly quickly, as does holding on to my cell phone, whether talking or texting. I certainly can't carry anything for any distance without putting on my lap or into a bag.

I forget sometimes that the power of this disease is often hidden in plain sight. If my muscles are weak, it takes more to get even the simplest things done. That extra work makes me tired, just like it would make anyone else tired. I am no different that anyone else. If I work hard, I get tired. The problem is that the activities of daily living are becoming increasingly difficult.

I want to try to get outside today, in my power wheelchair, if only to get some fresh air and a sense of escape from my apartment. That might actually perk me up, fresh air and the ease of using my power chair. I have to do something. Sitting here, falling asleep, having done nothing today; I see that as the worst possible outcome.

Sunday, 9 July 2017

Sleeping All Day

It's hard to believe it's 6:00 PM and I am finally at a place where I feel like I can write. Of course the fact that I stayed in bed until 4:00 PM might have something to do with it. It was that kind of day today, where I needed rest, lots of rest, where I told my HCA to leave me in bed to sleep rather than getting me up at 10:30 AM. Even still, I feel somewhat tired and weary. It's just one of those days.

These kinds of rest days usually happen once or twice a week. Often they can be easily linked to some activity in my life. For example, yesterday I had company over for dinner. When they all left at 10:00 PM, I grabbed another beer and watched something on Netflix. By the time I finished that beer, tidied up the last few things, and was ready for bed, it was 12:30 AM. Add 12 hours to that, and I would sleep until well past noon today.

There are days, however, where there is no reason for my need for rest, or at least none that I can identify right away. Some days my body just craps out, fails to get motional, and all I can think of is sleep. I am not really sure why days like this happen, they just do.

Then there is the combo plate, a bit from column A and a bit from column B. That's what today was really all about. Yesterday I struggled. I was tired yesterday for no apparent reason. I've been sleeping well this week, recovered from any jet lag as far as I can tell. I've not been terribly busy; mostly just regular daily living, laundry and such. Still, I got out of bed yesterday because I had company coming. I needed a few more groceries, some adult beverages, and a few other odds and ends. Shopping was in order. Then came preparation, although Brad came and did most of that.

So with having company over and having been only modestly busy yesterday, I would expect to need a bit of extra sleep. It was the carry over of general fatigue that really hit today, along with needing a bit more sleep. Even now I could readily go back to bed. The problem is, if I sleep all day, will I sleep at night? Does it really matter? I'm not sure. I just know I am still tired, despite sleeping until dinner time.

Saturday, 8 July 2017

Living With Less

It's a tough ride sometimes. I've lost a lot because of ALS. I've lost mobility. I've lost independence. I've lost strength, muscles. I've lost income. I've lost financial ability. I've lost emotional control more than once. There is only one way to deal with all of these losses. I am learning to live with less, making the most of what I still have, preparing for the losses yet to come.

It's an interesting thing, learning to live with less. It doesn't always mean living poorly, nor does it always mean a miserly existence. I live with less, there is no doubt about it. Yet I eat well, I drink well, I still get about, I still have people over. What living with less means for me is not having all the things, or abilities, I had in the past.

Living with less has been forced upon me by ALS. Some of the "less" in my life is obvious. Less walking, less mobility, less choice, less access. Some of it is not in the least visible. I live with a less positive view of myself and my body, struggling with my physical limitations and form. I live with less spontaneity, once the hallmark of my life, now almost completely gone. I live with less affection and human contact, although some might argue that this might be true without ALS. I don't know, because I live with less certainty about things.

Oddly enough, living with less in the physical realm is one of the least of my problems. Thanks to some lucky breaks I still have a bit of money left to travel or to buy something special. When that ends, as it has in the past, I know that others will still help me. Living in an apartment instead of a house with a garage and workshop, something I had looked forward to in my retirement years, is not all that bad.

Over the next while I will once again be reducing the contents of my closets. I don't wear suits anymore. I don't need ties. Well, perhaps one. I doubt that I will ever wear my kilt and jacket again, but I need to be sure that my son doesn't want it before I get rid of it. There are all kinds of other odds and ends I can dispose of, minimizing my life, my world footprint.

Living with less, whether forced upon me or not, is not such a bad thing. I am finding happiness in what I have left, in all areas of my life. I cannot defeat ALS, nor what it will do to me. What I can do is live in the moment, living with what I have, giving due regret to what I have lost, moving forward each day. I may be living with less, but I am also living more.

Friday, 7 July 2017

No Mirrors, Please

As my upper body continues to lose muscle strength, it is also changing shape. My arms are getting skinnier, but upper and lower. My shoulders seem slighter as well, but that might just be how I feel versus what is really happening. It sounds strange, but even my hands feel skinnier, more gangly than they were in the past.

There is no doubt that I am losing muscle mass. The folks at the ALS clinic are worried about my weight. I am fairly sure I am not losing a lot of weight. My belly is getting bigger. I've had to go up a size in underwear and four inches in jeans, just to keep things loose and comfortable. It's not my waistline that's big, it's the belly on top of it.

There are a couple of truly unfortunate things happening here. First of all, muscle mass is the first thing to go when you don't eat properly. It gets burned before fat. Secondly, muscle mass is substantially heavier than fat, so losing muscle mass will be more significant to my body, but will not help at all with my belly. No matter what happens, without aerobic and cardio exercise, my belly will remain and most likely get bigger.

My gut will get bigger because that's where the calories will go. My body is not using calories to maintain muscle mass, let alone build new muscles. The only way to build muscles is to exercise them. Alas, exercise of almost any type is out of the question for me. I wish I could exercise, at least my upper body. However that exercise will not build new muscles. All it will do is exhaust my remaining muscles and accelerate my progression. Of course it does create a situation where I could exercise myself to death. That would be different.

So my legs and arms will continue to shrink. My belly will continue to grow. Eventually I will look like a blob on a chair. I kind of look like that already. ALS is so much more than a muscle wasting disease. It is a full body destructive force, destroying who you once were in body, in mind, and even in spirit. I've stopped looking in the mirror. I don't want to see it anymore.

Thursday, 6 July 2017

A Beautiful Thing

Two and a half years ago my friend Mike and my brother Jim renovated my apartment for me, making it wheelchair accessible. We put down laminate floors, put in wider doors, enlarged the bathroom, added a roll-in shower, and added a nook for shelves. Picture it this way. The shower takes up about six feet along the outer wall. The last two feet out of the eight foot wide bathroom is a slot for shelving.

When we built it, back in January of 2014, there were two principal issues. One, expressed well by my brother Jim, was "be sure you live long enough to get good use out of this." I have. The other issue was the shelves. We managed to get two of them installed but not the third. It has been, for two and a half years, a project awaiting time and helpers.

These are not simple shelves. The slot for the shelving is about 44" deep, far deeper than the normal 18" shelf. In addition the slot is only 24" wide, so I cannot get deep into that space in my wheelchair. That eliminate the idea of a 12" shelf set sideways. So we made large, deep shelves and put them on drawer slides, the kind used on office desks. The slides are only 24" long, but with a block brace at the rear of the shelf and a setback at the front, we could use a 40" shelf which would slide out to where I could reach the contents.

We managed to get two of the shelves in place. Then we simply ran out of time. Also, shelf number three would be too high for me to reach easily, so it was logical that we should leave it out. Unfortunately that logic did not sit well with me, so I kept all the parts and pieces, hoping one day someone would help me put in shelf number three.

It has finally happened, not with just one helper but with several. At the same time as I wanted to install shelf number three, I saw that the original shims used to adjust for the non-square wall of my apartment were pulling out. They had to be replaced. I did shelf number one, all on my own. It took me about three days, but I got it done. Dan and Anisa came over and helped me with shelf number two; it took them just a couple of hours. We also increased the shelf gap from 12" to 15" between shelves. More room, more storage.

Then came shelf number three. Kate's partner, Phil, took the various bits and pieces I had, cut the shelf to size, and assembled it all. My friend Andrea came and picked up the shelf as David and I were headed off to the UK. While we were gone, she put two coats of bathroom paint over the shelf, sealing it and making it look pretty. The day after David and I returned, Andrea brought the shelf over. Finally, over the last couple of days, Dan has been over once again, this time to install shelf number three.

We finished last night. The sight of this small project completed almost brought me to tears. It was, it is, important to me. The shelves look terrific. The spacing is right. The balance with the room is right. Already I have put back my linens and towels, yet there seems to be plenty of room, even more than before. As an added plus, I can reach the top shelf from my wheelchair, especially with the help of a grabby stick. Even more, if I need to get right up there, I can do that with my power wheelchair.

There is a lot more going on here than a simple shelf project. I've lived long enough to see it complete. My daughter, her partner Phil, Anisa, Dan, and Andrea all helped to make this possible. It happened quickly once we finally got it started. It fits and it works. The project is complete. It is a beautiful thing.

Wednesday, 5 July 2017

New HCA

I have a new Home Care Aide today. Micheal has left me. He said that working with me was hurting his back. I can understand that. He is tall and was constantly bending over to do something, and bending over incorrectly. I did what I could to make it easier on him, but in the end, he has taken light duties as an alternative. So from Micheal, I go to Semhar, an Eritrean woman who has lived in Canada for 8 years. She's a Mom with kids aged 2 and 4.

One of the rough things about having a new HCA is the learning period. She has to get used to me, and I have to get used to her. She needs to learn all about my routines, my exercises, where things go in the kitchen or around the apartment, plus a whole host of other minor things. It means working out schedule flexibility, timing, when it's okay to be late, when it's not okay to be late. It all takes time.

On the plus side, Semhar cooks! I got a nice breakfast today; cheesy eggs, bacon, toast, and coffee. She seems more than willing to ensure I get a good breakfast, is comfortable using the various spices and such in my kitchen, and is not afraid of olive oil. In fact, when first confronted with the choice of olive oil or canola oil for cooking, she choose olive oil. That wins points with me.

Of course it will be a long time before I know for sure if she will stick around. The situation for HCA's can be quite fluid, thanks to the nature of their work. Clients come and go, some pass away others transfer to homes. In some cases the HCA and client are not a good fit. I try on my side, yet there are still times when I have to ask for a change.

Today, as a first day, went fairly well. I got my shower. She helped me dress. We did my exercises as best we could for a first time. She made me breakfast, then mopped the floor in the bathroom and bedroom. My water jug did not get filled, but it's already half full so no big deal. My bed is properly made with the lift in accessible position. The dishwasher was emptied with me showing where dishes went, then refilled and it's now running. The garbage did not need to be taken out, so that will be for tomorrow. Not a bad start.

Tuesday, 4 July 2017

I Can't Take Off My Underwear

Have you ever had to physically fight with something so much, struggle with it so hard, push or pull with so much might that you peed your pants in the process. This has become an almost daily occurrence for me, where I deal with something requiring so much out of me that my bladder lets go. These days, most often, it's getting my underwear off when I go to the toilet.

There are things in my progress which I define as situational losses, and others which I define as permanent losses. A situational loss is one where a given method of doing something fails me part of the time, or requires I change the situation and do something differently in order to accomplish the task at hand. Sitting up is one of these situational losses. I can still do it, if the situation is right. If not, then I cannot sit up. Picking up laundry is another; if I keep the laundry basket on top of another basket, I can slide it into my lap. I cannot pick it up off the floor unless I empty it about halfway. Then, once I have lifted the basket, I use my grabby stick to pick up that which I dropped.

All situational difficulties become permanent. This is ALS. Everything is lost, over time. Today it is my ability to take my underwear off while seated on the commode chair. When I get up, I use the sling to transfer to the commode chair. I then roll into the bathroom and over the toilet. At that point, up until the last few days, I slide my underwear off. Unfortunately my arm strength has diminished such that I can no longer do this without help. I am not strong enough to take off my underwear.

I tried it today. The last few days I have had to ask for help, either from David or Kathy. Today I was alone when I needed to use the toilet. So I tried it, with all my might, fight, and strength. I tried so hard I peed myself. Yet I could not get them off. Unless...

It is still within my ability to take my underwear off while laying down on my bed, using the side by side roll method. So, I used the sling to put me back on the bed, took my underwear off, and got back onto my commode chair sans boxers. I was able to go to the bathroom, and, with some major struggle, able to dress myself. I managed to finish the project without peeing myself again. So that's a plus. Not being able to take of my own underwear unless laying down is another loss. This is what it is like living with ALS. Situational to permanent. Ability to disability.

Monday, 3 July 2017

Home Days

Wow! Today was the perfect day for my first day home from our trip. Kathy was here, working her magic as she does, cleaning up my messy apartment, helping me clean myself up, making a terrific breakfast for me. She's taken to using herbs from my herb garden along with tomatoes and peppers from their respective plants on the deck. It was a fabulous breakfast and a great start to my day.

I'm going to need a couple of great starts. The change from road rules to home rules is already upon me. I have to go grocery shopping. I have to do laundry. I need summer shorts, so a trip to WalMart or Costco or something of that order is necessary soon. I am compelled to clear my own table after eating, make my own coffee, tidy up and set up and take down and put away as required. There is no room service, no helper on hand. It's quite the shift.

Yet still, as much as I love travel, I am happy once again to be home, to fall into my safe and steady routine. I am happy to use the slings and commode chair that work for me. I am happy to be in my queen sized bed with two M-rails, one on either side. I can roll over in bed safely. I am happy to have my bidet seat on my toilet along with a shower well designed for my needs. I am happy that I can get a drink of whatever I have whenever I want, although I do wish I could get beer on tap, particularly an Irish Ale.

It looks like travel may not be much of my future in the future. I will fight that, working tirelessly to keep active and alive. The problem is that it takes so much to help me, so much to care for me, that one person is probably not enough any more, unless I take a portable sling and such. I'm not okay with this. On the other hand, I am happy here at home, so I really don't have much to complain about. Instead of going to see people and places, I will have to ask people to come and see me, and watch documentaries about places I would like to go. Thus is life, for me, living with ALS.

Sunday, 2 July 2017

WestJet and David; Heroes

Home. It amazes me to say that, to be able to wake up in Dublin and go to bed in Calgary, to cover thousands of miles by air, change planes three times, wheel around different airports, all to arrive with myself, David, and luggage intact here at home.

The day started out with a near disaster. David set the alarm last night, in Dublin, for 5:00 AM, giving us an hour to dress and pack, a half hour to get the shuttle to the airport, arriving in time for a 6:30 check in. Unfortunately the alarm failed us. David bolted out of bed once he realized we were late, a whole hour late, in getting up. We did the fastest dress and pack routine you can imaging, going so far as to leave the arduous task of putting on compression socks to be done at the airport, once we were checked in.

We made it to the airport at 7:00 AM. Thanks to the efficiency and preparedness of WestJet, we made it through check-in and security in jig time, with no crisis or disaster holding us up. In fact this whole flight experience with WestJet was better than just good. It was stellar. They anticipated needs, had equipment ready on time, understood my personal issues, helping all the way.

There are a couple of things which truly stood out to me. First, nobody asked if I could stand up and walk. Not one person. Everyone had notes, sufficient that were ready even to know me by name as I arrived. The read their notes. They were all singing from the same song sheet. I felt truly respected in the process. The other thing that really stood out with me was their willingness, almost to a person, to do the extra thing to make my trip comfortable, right down to getting Timmies for me because I had to be taken on to the plane before I could get it for myself. WestJet truly impressed me.

Now that I am home, I am having a glass of Scotch and slowly unpacking. There are gifts for grandchildren, fridge magnets for myself, bottles and momentos beyond measure. I have laundry, lots of it, all headed to the basket. I have knick-knacks to set up and travel gear to put away. I am not sure what I will get done tonight, but it is enough to be home.

Thank you to David. He was a champion through the whole trip. He deserves a medal, or at least a thank you.

Saturday, 1 July 2017

Going Home

This is my last blog post from Ireland, likely my last blog post from anywhere rather than home or near to it. This trip has exposed the true extent of the advances of ALS. It has worn me down substantially, David too. While we have worked hard at getting along, nerves are getting frayed, differences are showing up plain and clear. It's tough enough to travel with someone, travel with someone who has ALS is even more difficult.

It should come as no surprise that pushing me around, hefting luggage, transfers, all have contributed to the exhaustion David clearly feels at night. On top of that, my style as a night owl is cramping his sleep style as an early riser. It's been a wonderful holiday, but it's time to go home. Fortunately that is exactly what is happening tomorrow morning.

Our flight is at 8:30 AM. That means we have to be at the airport at 6:30 AM. While we booked at an "airport hotel" with a shuttle, the hotel, a mere five minutes from the airport, demands that we be in place for the shuttle a full  30 minutes ahead of our required departure time. That means we have to be downstairs at 6:00 AM. We would have left our hotel in Drogheda at around the same time were we to have stayed there and driven. The only plus is that we don't have to worry about the car in the morning, although David tells me the drop-off is very efficient at the airport.

The other problem is the late hour right now. I am not ready for sleep yet it is almost 10:00 PM. I can't take a sleeping pill tonight; we are getting up at 5:00 AM and I cannot afford to be groggy from Zopiclone. So tomorrow morning will be rough. I plan on sleeping on the plane for the five hour flight to Gander, NL. After that we have a 3 hour hop to Toronto and a 4 hour hop home to Calgary. Sleep will factor largely, as much as it can, but I can see the day being arduous.

Tomorrow I will sleep in my own bed. I will have a good washroom, a good bed, double M-rails, and slings. It will be nice to be home, at least from a mechanical point of view. Still, this adventure has been good. If David could do it, I would happily spend another week here in Ireland.