Friday, 31 March 2017

Just Not Me

There will be two people specially remembered in the world of ALS; the last person to die from this disease, and the first person to be cured of this disease. These two people, and their two individual events, will likely not happen at the same time. People will die from ALS for many years after there are treatments. It will take a long time before there is a cure. It will happen, some day, most likely too late for me. But it is possible that those people who will be cured are amongst us right now.

There have been a couple of interesting developments in the ALS treatment arena, and one very disturbing change. The disturbing change is in the area of stem cell treatment. There is no proven correlation between stem cell treatment and recovery from ALS. I know PALS who have spent the tremendous amounts of money needed to go abroad for these treatments. They are all dead now, or they have had no change in their ALS and are on the same path as before.

What is disturbing these days is a series of ads I have been seeing on Facebook which make it look like this is a working treatment. These ads tell the stories of people who are trying to raise money for treatments at a clinic in Bangkok; this is not a place noted for its research and treatment into ALS. The ads are very professionally done, made up to look like news stories, implying a breakthrough in ALS treatment, carefully worded to avoid the promise of a cure, worded well enough to instill hope, and, most importantly, create new customers. This is the worst kind of preying on the sick, the most venal of attempts to sell an unproven, snake oil treatment. I fear these ads the most.

Then there are the legitimate drug companies seeking permission to enter North America with new treatments, a process which can take many years. One of these is a company from Isreal called BrainStorm, with a drug called NurOwn, which in turn is a part of a legitimate stem cell treatment process. This drug creates a special kind of cell, based on the patients spinal cord stem cells, in the blood which can protect neurons from toxins. It has shown effectiveness in animal models of ALS, sciatic nerve injury, Parkinson’s disease, multiple sclerosis, optic nerve ischemia and Huntington’s disease. The drug has been tested on people and has been shown to slow ALS progress.

A second drug seeking human trials in North America is Masitinib, made by AB Pharmeceuticals in France. According to AB Pharmeceuticals, Masitinib helps to slow progression of ALS by reducing inflammation. A kinase inhibitor, masitinib blocks mast cell-mediated degranulation, the release of cytotoxic substances that might further damage the motor nerves. In other words, it won't cure ALS, but it might slow it down a bunch.

The problem with both of these drugs is the need for Phase 3 Clinical Trials. This is the phase where a new drug has already been demonstrated as safe for human consumption and potentially effective in treating the targeted disease. Both NurOwn and Masitinib are ready for stage 3 in North America. They are waiting for government approval. The problem now is simply one of time.

It often takes up to two years for the US government to approve a Phase 3 Clinical Trial. These clinical trials are large, consisting of hundreds and perhaps thousands of people. So once the Phase 3 Clinical trial is approved, a process which might be foreshortened for an ALS treatment, the trial itself must be completed, a process of up to 3 years. After all of that, the drug must be submitted for FDA approval in the US, and Health Canada approval in Canada. In the US, these approvals can take a year or two. In Canada they take even longer; Canada adds the additional wrinkle of each province having its own approval process as well.

So even though there are viable treatments on the horizon, treatments which have a pretty fair chance of slowing, or even stopping, ALS progession, they are years away from getting to me, mostly thanks to slow and insensitive government organizations. They are, in battling disease, the same as in battling wars, inefficient and arbitrary.

All of this is to say that there are a great many things out there which could get my hopes up, discoveries which "should" make me excited. Except I know the process. It is highly unlikely that I will be the first to be cured. It is decidedly likely that I will not be the last to die. At least the progress being made will help someone, someday. Just not me.

Thursday, 30 March 2017

Selling My Truck

I'm thinking it might be time to sell my pickup truck. My body has reached the point where getting into and out of the truck solo is a non-starter. Even with help, recent changes to the seat, for safety purposes, make is impossible for me to get into the truck without a ramp and helper. So, for a certainty, there are no more solo rides in the truck.

Kate has been suggesting I get a minivan for quite some time now. She probably remembers the one her uncle had for her cousin with Rhett's Syndrome. She certainly thinks of the one her you friend had, a friend who was paraplegic, like me. These two represent the two approaches to wheelchiar vans. The first choice is where the person in the chair never drives. The second choice is where the person in the chair always drives.

With the first type of van, there are no hand controls. The focus is on wheelchair ramp along with straps and tie downs for safety. The wheelchair passenger may be facing the front, and often is. Sometimes the passenger seat is taken out so the wheelchair passenger can sit up front. Other times the rear seats are take out so the wheelchair passenger is always at the back, and the ramp is on the back too. Taxis are almost always like this.

With the second type of van, the driver's seat is removed and hand controls are put in place for the driver. The driver comes up the ramp into the van, then rolls into the driver's seat. This means only the wheelchair passenger can drive, unless you put the driver's seat back in. In my case this would definitely cut down on the long haul road trips.

There is a hybrid of these two, much like my truck. It's where a transfer seat, like my truck seat, is put in at the driver's seat. Similar to my pickup, you transfer to the lift seat. In some cases the whole front seat swings out as the lift seat. I would mind having this for my truck. You transfer to the seat and it lifts you into the truck or van. The only difference with the van is it can also be configured for the wheelchair to be either the passenger seat, which is unlikely, or for the wheelchair to go into the back seat, perfect for my roll as a back seat driver.

I love my truck. What I would ideally love is on of those swing out and drop seats. With that seat, I could transfer from my wheelchair and the sea would lift me in. I would need some sort of change to my wheelchair lift apparatus as well. This kind of seat would mean I could drive, others could drive, and I could keep my truck. I love my truck. It's a big deal.

It's also an expensive deal. I don't even know if it could happen, but I suspect the price tag would be somewhere between $15,000 and $20,000. That's the price of a used van in good shape. If I sold my truck for somewhere around $7,500, I could probably get a well used wheelchair van for an additional $10,000 to $20,000. I just have to make sure it is the right kind.

All it would take is the willingness for me to sell my truck, and a bunch of money. Hmmmm.

Wednesday, 29 March 2017

What Then?

I didn't want to get out of bed this morning. I admit it. I stayed up late last night and had a bottle of wine. But it wasn't that late, and one bottle of wine has almost no affect on me these days. I've been building up my resistance for a while now. No, the reason I didn't want to get up was simply one of energy. Getting up, even with the assistance of my Home Care Aide, requires energy. I just didn't feel like expending that energy this morning.

Almost everything these days is an energy trade-off. I'm having my own, personal energy crisis. Typing this blog requires energy. Making food requires energy. Getting dressed requires energy. Even going to the toilet requires energy. Unfortunately, toileting is something I am compelled to do, whether I am on the toilet or not. That energy use falls in the "required" category. However, almost all other energy use is optional. And some days I just don't want to use it.

Elizabeth is coming for dinner tonight. She is the real reason I got out of bed today. Yesterday it was Anne, Gabriela, and Kate, all in their turns. In fact the only reason I get out of bed on a great many days is because people are coming to visit. Sometimes I am up before they get here, other times I am not. Mostly my guests prefer that I am dressed before their arrival. On occasion the odd one has to help, but rarely.

It's probably the only thing which really keeps me going, truly gives me a reason to live, to function. The people in my life are doing more and more for me, most often just by showing up. I come to life in the company of others; I slide into morosity if I spend too much time alone. That's when the wine comes out, to self-medicate away the loneliness. I am so grateful for them.

I am compelled, however, to ask myself what will happen when I truly cannot get out of bed, when I am unable to greet them with a lively hello and a nice meal? What will happen when their visit is interrupted my home care taking me to the toilet or changing a catheter bag? What will they do when I don't call them, instead depending on them to simply come and visit? I suspect I will have a lot fewer guests. I am not sure what I will do then. The loneliness will get pretty bad.

Tuesday, 28 March 2017

Tired Again

How is it that I can be out of bed for all of 90 minutes, and feel like I could go right back to sleep right now? I've had some breakfast, a good breakfast. I've had my coffee. Yet here I am, ready to close my eyes and sleep right here in my chair. Fortunately for me, the work of getting into bed or onto the couch is such that I will likely just stay in my chair. That will keep me mostly awake until this exhaustion spell passes.

It's the kind of day where I should feel great. I went to bed at 9:30 PM last night, nothing to drink. I took a sleeping pill, assuring a full 8 hours or uninterrupted sleep, except for  the weird dreams these sleeping pills induce in me. I slept even longer than that, not waking until just before 9:00 AM, although I was up every hour or so from about 5:00 AM on, sometimes to go pee, other times because I thought I heard something in the kitchen. Still, it was a full night of sleep, a theoretical restful night.

The spring weather outside should be enough to shake this off of me. The sky is a soft blue, mottled by gentle strips of gauze thin cloud. The breeze is easy, the air is warming as spring reaches across the landscape. Soon the trees will bud. It's the kind of day that makes you want to get out, to feel the sun on your face, to taste the fresh breeze, knowing that summer is on its way.

Yet here I am, looking more for sleep than anything else. I know this will pass. My friend, Anne, has stopped by. Her company will keep me going, stimulating my energy levels to at least non-nocturnal. She's brought her dog, Echo, a virtual puppy love machine. Her demands for treats and petting will keep me going. I'll be tired. I just won't give in to it.

Monday, 27 March 2017


I am becoming quite concerned about what will happen to me and when it will happen. There have been a number of minor changes in my abilities, all of which are hardly noticeable by anyone else but me. For example, I am having increasing difficulty getting my compression socks on, and off. This morning I had to ask Kathy, my HCA, to help me with them. I've also seen a decrease in my ability to roll from side to side a I pull up my pants. Lately I've been asking the HCA's to help me with the roll and the pull.

There is no doubt that I am well into decline in my upper body. The visible loss of muscle is just one indicator. There's also my need for help to get into the truck, my ever increasing use of the sling instead of the transfer board, the substantial difficulty I now have getting my underwear off while sitting over the toilet in my commode chair. Things which once were not heavy are now impossible for me to lift. I no longer buy milk in the large jugs; they are almost too difficult for me to lift.

Of course all of this is to be expected. I have a deteriorating, terminal illness. Notwithstanding the impressive research going on with respect to ALS, and the new treatments in the pipeline, it is unlikely that I will see a cure or treatment in my lifetime. That, however, is because my lifetime is expected to be fairly short. If I had more time, perhaps.

So I face the next months looking at what I will lose along the way. I worry about what I will do when I can no longer dress or undress, when I can no longer make the transfer to my wheelchair without help, when I am unable to manage the sling and lift on my own. Part of me says not to worry, just to deal with it when it happens. That is what I am most likely to do, regardless. On the other hand, thinking, worrying about things, wondering what will happen? This is who I am. I will worry. It's in my nature.

Sunday, 26 March 2017

My Knickers Are In A Twist

You know in those TV shows where the detective or coroner can tell if someone was dressed by another person after death? I can tell you for a fact, it's not only possible to tell, but fairly real when they do it. It's usually the pants which are a dead giveaway. They get a twist in them. It happens to me too.

When I dress, be it my underwear or pants, I need help these days. The process is that the HCA generally helps me get them on over my feet and up as far as the edge of the bed. Remember that I am sitting through this process; there is no standing up for adjustments. Once my pants or underwear are up the the edge of the bed, I roll to one side so the HCA, or myself if I am up to it, can pull one side up. Then I roll to the other side to pull that side up. Rinse and repeat until underwear or pants are completely up, or at least mostly up.

The trouble comes with the HCA doesn't really understand what they are doing. My regular HCA's, Kathy and Micheal, are pretty good at it. They've learned what it takes to get my pants and underwear on straight, without a twist. The trick is learning to center the front before you start pulling them up at the sides. It's not as easy as you might think, since both underwear and pants will twist as they are pulled over dead feet and legs. So adjustments must be made.

The real secret is learning where the rear seam is, especially on my jeans. If the rear seam lines up with my butt crack, the jeans will go on straight. If that seam is at an angle or twisted in any way, my jeans will end up with the top button off one side or the other, requiring a great deal of tugging and rolling to re-center them, a task which often does not succeed.

As with most things, it is the pre-work, the preparation, which drives success. Get the pants or underwear going straight in the beginning, when they are pulled over my feet, then the odds of having untwisted knickers improves greatly. Get a twist in them down there, and the twist goes all the way through.

Of course there is more to this task, especially with jeans. That involves getting them all the way on while they are underneath my now loose and flabby ass. That, however, is a task for a different day. Thanks to a new, untrained HCA today, my knickers and my jeans both have a twist in them. It will take me all day to work this out. I suppose that could be my goal for today, to get my knickers out of a twist.

Saturday, 25 March 2017

Getting Out, Two Days Running

I want to get out today, out to do something interesting and different. Normally I would look to any number of friends for help with this. Short notice makes this a challenge today. The odd thing is that there are at least two different things I am interested in doing. One is going to "Pizza In A Ghost Town", out at Rowley, a ghost town about two hours away. The other is going to Rock-A-Palooza, a local gem and mineral show, in the exhibition hall, down at the Spruce Meadows Horse Center.

I've been to Rowley before. It was great fun last time and I expect it could be the same today. I would be attending with the same folks as last time, although this time I do not have a designated driver along with me. My beer consumption would be dramatically reduced. Still, the setting is fun and the pizza is great.

Rock-A-Palooza is a new thing for me. I just want to see what kinds of rocks and minerals are there. I suspect they are selling lots of rocks of all types. I might even want one or two, for my bookshelf. The advantage of Rock-A-Palooza is that I can get there by C-Train and bus, using my power wheelchair instead of my manual chair. It also means I can go solo, not needing a companion.

There is little doubt that I will meet people I know while I am there. It's bound to happen. I could also stop off on the way home for sushi with any number of people I know who live in the south part of the city. There's bound to be someone, even on short notice.

What's really cool about all of this is that I am going to get out today, or at least I want to get out today. I got out yesterday too, heading about 2 KM to the Co-op grocery store to pick up a few things. This would make it two days in a row where I am escaping my apartment. This is a good thing.

Friday, 24 March 2017

I Cut My Hair

I woke up this morning shortly before 9:00 AM, feeling fresh and ready. I wasn't ready to get up necessarily, but I was ready to begin the process of trying to get up. My Home Care Aide arrived. While he did some initial setup in my room, I slowly went through the stages of laying down to sitting up. Then I cut the bandage off of my foot, a task which will likely end on Monday.

What I noticed this morning was that I wasn't feeling the anger, the bitterness, the sadness which I have felt over the last couple of weeks. For the first time in a while, I feel sort of okay. I'm not perfect. I'm certainly not healthy. Let's just say I feel less bad today than I have felt in a while, bordering on the edge of good.

Cutting my hair is a good example of how this kind of feeling precipitates out. I have been meaning to cut my hair for some weeks now, even before David and I hit the road. I've let myself get all scraggly and unkempt. I just didn't care all that much. A few days ago I was tempted, but in the end I didn't feel like I wanted to make the effort. This morning, however, I look at myself in the bathroom mirror, and in a moment realized I wanted to cut that scraggle off of my head and face. So I did.

Of course I have been struggling with a bit of mini-depression, especially since coming home from the road trip. I love travel, escaping from the prison of ALS in my home here in Calgary. It's not that I am forced to stay in, caged inside my apartment, during the winter. It's that I don't have the energy to fight the weather. So coming back from the road trip, back from the freedom of travel, I was in a slump.

That slump seems to be coming to an end. While I am certainly tired right now, after a nap I will get in my power wheelchair to go do some shopping. The Coop has their 10-for-10 sale on now, a favourite of mine, since many of my staples like beans and tomato sauce go on sale, cheap. Actually, though, I just feel like getting outside. It's about time.

Thursday, 23 March 2017

Living A Violin String

Yesterday I wrote about bitterness; today I will write about anger. What I know is that bitterness is a result of anger, something which does no good, not for me, not for those around me, not for anybody. Yet I am angry. I'm angry that I got ALS. I'm angry that I don't get these years which I had hoped for. I am angry that my life didn't turn out the way I wanted.

All of that anger is pointless, most of it a result of frustration. While I may have something to be angry about, I most certainly have a great many other things which bring me happiness and joy. The only thing I can say is that the anger passes, as do all the stages of grief, for grief is what is behind all of this. I grieve constantly. Every day I die a little. For each loss, for each change, for each increment of decline, I grieve.

Like everything else with ALS, grief tires me out. It wears away at my emotional fabric, tearing bits and pieces off of me, rending my emotions, fading out my joy, replacing it with the anger and bitterness which remains. This is not just a physical illness; it is a psychological death as well. It kills to see myself die a little each day. Of course I am angry. Of course I am bitter. Who wouldn't be?

Yet still I wake up each day. Still I live life as much as I can. Still I keep going, not knowing how to stop, not wanting to stop, all the while wishing it would stop or I could stop. This too wears on me. Every emotion is stretched, like violin strings. Wearing on them rarely makes beautiful music. It is more likely to cause them to snap, twanging awkward, sour notes.

I am tired. I am perpetually tired. I am always tired. I am tired of being tired. My emotions are worn thin. My strength is leaving me. My ability to live life as I would like is diminishing constantly. Am I bitter? You bet I am. Will this bitterness pass? Yes, until it comes around again. When will that be? I don't know. Most likely when another violin string breaks.

Wednesday, 22 March 2017


This is an advance warning to my children. You may not want to read this blog posting. It has to do with how I feel about my marriage and my ex-wife.

Several people have commented lately on how I talk about my marriage with such bitterness. It's true, I do. This comment has come from friends online, from home care workers, and from counseling professionals. It's true, I am bitter. I was so unhappy for so many years. I was such a fool to stay in a bad marriage simply because I believed that marriage should be for life.

I spent a lot of years convincing myself that I was doing the right thing, the responsible thing. It would have been far more responsible to admit the failure, deal with the anger, and leave. I even did that once, but like a fool I went back for more. She told me we would go to counseling and things would change. What she meant is I would go to counseling and I would change. I did, then I left her for good.

My marriage was a 32 year disaster. After a few years of reflection, I am at a point where I realize that my ex-wife didn’t really love me as much as she saw me as a revenue source. She was certainly loving, at least some of the time, in our marriage. We were certainly sexually compatible; in fact the sex was great and I miss it constantly. We did lots together with each other and as a family. But there was always a layer of judgementalism. I was never good enough for her.

Then I had some financial troubles, a period of under-employment, where money was tight. I don’t think she ever forgave me for this. I was responsible for being the economic engine of the family. I failed. The whole “for richer or for poorer” thing went right out the window. I failed, and our life situation was my fault. It was my job to fix it, my responsibility alone to make more money.

Over the years she got more and more controlling about money and just about everything else in our life. She basically taught the kids to not respect me or listen to what I had to say. In the end, when I left, she actually told the judge in divorce court that I had contributed nothing to the marriage and deserved nothing out of it. In court she said I was lying about having ALS so I didn’t have to work and pay alimony. Yes, she demanded alimony in court. She ended up with about 75% of our family assets. I ended up with ALS, and freedom.

So yes, I am bitter about wasting most of my life with someone who didn’t love me. That is my one true regret in life, that I have never been loved by a woman for who I am, without condition or correction. I was a fool. I left her after 20 years. I went back when she said things would change. They didn’t. Another 10 years later I left for good. I had been having symptoms of ALS for almost a year by then, but I didn’t know what it was. So here I was going through a very nasty divorce and the diagnosis stage of ALS, both at the same time.

These days even sex is out of my reach. Both of my Health Care Nurses have said I just need to get used to that idea, that I would likely never find a woman willing to look past the ALS, the short life span, the lack of body capacity. That makes me bitter too. If I am angry about one thing most of all, it is the loss of this one thing, this part of my life where I had a chance for real intimacy.

Like most men, I equate intimacy and closeness with sex. It's where we get to be vulnerable. Yet here I am, at a time when I am most vulnerable, when I most need intimacy and closeness, and the woman I devoted my life to is not here. I did my part, far more than just my part. I am going through this and she gets of scot-free, with a house, with grandchildren right there at hand, healthy and active. This is how it ends for me. No wonder I am bitter.

Tuesday, 21 March 2017

A Stranger In A Strange Land

I want to follow up on yesterday's post where I talked about how little effort it takes for me to become exhausted. Today I've spent most of my day in bed. When Home Care came this morning, Kathy, my Home Care Aide, left me in bed at my request. She did, however, make a couple of terrific sandwiches, prepped the coffee machine, peeled and segmented an orange for me, and set out a container of wafers on the table. I was sound asleep when she left.

That whole state of being sound asleep went on only for an hour or two. By 10:00 AM I was mostly awake, yet drifting in and out of sleep, dozing along. I stayed in bed longer. I would look at my phone periodically, reading Facebook postings, reading news, responding to messages. The effort of doing that would cause me to tire, so I would doze off again, until my phone drew me once again into its spell.

The reason behind this sloth and indolence is simple. I am at the point where it is just plain easier to stay in bed unless I have a reason to get up. Today, fortunately, I had a real reason. One of the messages today was a friend asking me to meet for a drink at Milestones across the street. It was perfect timing; it gave me cause to act. That's the only reason, besides toileting, for me to get out of bed today.

It's sad that I have come this far in progression and loss, to the point where sitting up in bed takes so much effort that I would rather not do it, to the point where getting dressed takes enough effort to make me want to go back to bed. If there is anything where I could say I am "fighting" ALS, it is in these kinds of daily efforts, these normal things which take so much out of me now. Even the help and encouragement of my HCA isn't enough some days.

Then it is the reverse at night. I am comfortable when seated in my wheelchair. It takes very little effort for me to move, to get a glass of wine or Scotch. It's easier for me to stay up than it is to get into bed and get undressed. Eventually my body takes over. Eventually sleep demands that I go to bed, or at least fall asleep in my wheelchair with my head resting on my table. So I often stay up late simply to avoid the effort of the transfer and work of undressing.

It's a strange life, a strange land in which to live, and here I am a stranger, so unready, so unprepared, so lost in it all.

Monday, 20 March 2017

Made Weary By Work, Just A Little Work

My jaws are tired from chewing, from eating a couple of sandwiches. My Home Care Aide made me these terrific sandwiches, and it is real work to actually eat them. I did it; never let it be said that I give up easy, especially when it comes to really great food. Yet it took real, focused effort towards the end of eating them, effort to life the sandwich, effort to chew, effort to swallow.

This is not true bulbar ALS. It is the generalized exhaustion of ALS. I am not too weak to eat. Eating makes me tired, that's all. There is perhaps a bit more to it that I should explain. Last night I put out a call to my friends for someone to come and help me make a ramp for getting me into my truck. My friend Ryan offered to make it. He came today to get things going.

In preparation for his arrival, my HCA made sandwiches, theoretically a part of meal preparation for me. Trust me, she can whip up a pretty good sandwich in almost no time. So she did. When Ryan got here, we each had a sandwich and a coffee before starting work. We did some measurements of my wheelchair. We went down to the truck and did some measurements there. We went into the storage room for saw horses. We got tools down from the spare room shelf. Then we stopped for more sandwiches and some water.

That's when the exhaustion set in for me. Actually it set in as we were going through the storage locker, but I held it at bay until we got upstairs. Ryan looked at me at that point and said he was going to take the tools and drawings home. He would work on it there, bringing it back tomorrow when he was done building. It's a much more realistic approach given that I need a nap after 20 minutes of effort on something.

My lack of endurance at any heavy physical task is frightening. Light work, especially something like driving, can make me weary after a couple of hours. Heavy work, like lifting and wheeling about, can wear me out in a matter of minutes. It's just so unfair.

Sunday, 19 March 2017

Technology Failure

My phone just posted an alert for a dangerous storm in my area. I checked with Environment Canada; there are no warnings. The weather is clear and sunny, only light clouds in the sky. I think my phone is confused as to where I am right now. I can understand that. It is, after all, only a phone. As a long time user and early adopter of most technologies, I truly understand how unreliable they can be.

On the other hand, once set up properly, single use technologies and even multi-use technologies can be highly reliable. How often does your toaster break? What about your coffee maker? Now ask yourself how often you use your coffee maker to toast bread? That's what makes it so highly reliable; one use, one function, again and again and again.

I depend on a lot of technology these days. It's important to understand what I mean by that. Technology is a lot more than computers and programs. At its root, technology is the collection of techniques, skills, methods and processes used in the production of goods or services. The use of tools is at the heart of technology. Tools themselves are a technology. I use an awful lot of tools in my daily life, so many more than most people.

Never mind the simple implementation of things like a transfer board or an M-rail on my bed. The technology that helps me live right now includes lifts and slings and wheelchairs and grabby sticks. It includes multiple technologies, like in my Power Wheelchair. As I progress, there will be more technologies turning my home into a hospital room. It's well on its way already.

As ALS continues to destroy my body, I will need assistive technologies like voice recognition, something I already use with my phone. These days I "ask" Google a lot more questions than I type. The same is true with Google Maps. I will confess, however, that these areas are more susceptible to error. This lies in the way we us our phones; they are now a computer, a GPS, a communications device, an internet access portal, and so many other things. The more things there are, the more likely one of them is to go wrong.

Right now I am grateful I can still type. At least this tool driven process has been around long enough to be relatively error free. Most of my typing errors occur at the user end, not the machine end. Still, auto-correct is a bit of a terror. Speech recognition for my laptop will be the next thing, hopefully some time away, once my hands grow too weary for typing.

Technology can keep me going for a while. I suppose the real issue is whether I want to rely on technology to keep me alive, moreso than the rest of the world. I still think the answer is no, but as that line in the sand gets closer, I move further back from it. Technology; it's a blessing and a curse.

Saturday, 18 March 2017

Wheelchair Lift Repairs

Yesterday I took my truck in the Accessible Vehicle Solutions shop. The wheelchair lift and seat lift system both needed some repair work. The shop is right next to the wine store, so I figured I would know what to do while I waited. My friend, Anne, came along to help me in and out of the truck.

There were three things which needed to be repaired or maintained on my truck; the lift seat itself, bent low from the last four years of my weight, the wiring cable for the wheelchair lift which had been crimped and frayed from use, and the hand controls which need lubricating every couple of years.

The lift chair was the biggest thing. When it was new, it was level and fairly easy for me to sit on. As time has gone by, two things have happened. First, my weight has caused the holding bracket to bend downwards. This means the seat points downwards now, sloping in a way to make it unsafe for me unless I am holding a safety bar or some other grip. Then there was the seat to chair gap, about 4 inches where the seat was higher than my wheelchair. As I have weakened, this has gone from inconvenient to impossible for me to traverse.

In order to stabilize the lift chair, the mechanic simply put a lift screw in the bottom of the seat. This screw lifts the angle of the seat to compensate for the drop in the holding bar underneath. At the same time this lift screw can be, and is, adjusted to make the seat slope inwards rather than outwards. I felt it immediately, the increased safety, the loss of need for a grip. It will make it tremendously easier when adjust, readying to transfer, getting the wheelchair into the back.

What I know for sure is that fixing problem almost always exposes another. This is true with the truck seat. The upward angle of the seat now makes that gap of four inches into something like six inches.  That four inches was already getting tough for friends boosting me upwards. At six inches, it is pretty much impossible except for the strongest of them. On top of this, my continuing weakness in my arms and shoulders means I can offer no help whatsoever with that transfer. In years past I could aid in the lift. No more.

So what to do? I have a safe truck made unusable by the elevation of the seat. The solution to this is a folding, portable ramp that will go right next to my truck. I have designed it in my mind already, a box frame made of 1 X 6" pine with a 5/8th " plywood deck, about 30 X 30 inches square. One end will be open underneath and a ramp will be attached with a piano hinge, such that when I pick it up the ramp will fold underneath and into the box. I'll have some sort of handle attached to I can easily pick it up once the chair is in the truck.

But first I have to make this sucker. I will need help, a fair bit of help, to do the measuring and construction, from cutting the box frame to cutting the deck to assembly and finally to testing. I could take a day or so to build, all in. It won't be really light weight, which is unfortunate. I was wondering if there was a way to build it with plastic to make it lighter, but I have neither the tools nor the skills to make that happen. So wood it must be.

All I need to do now is ask someone to help me. This is where the problem lies. I don't want to ask for help. I don't know who to ask for help. I don't want to hear the no or suffer the denial. I can count on myself. I just don't think I can do it myself. That's the biggest barrier.

Friday, 17 March 2017

What Remains, Remains

I've got a busy day today, along with having fallen behind on the tasks from the last few days. There is laundry to be folded and put away. Both laundry baskets are full, one with folded clean laundry and the other with unfolded clean laundry. New laundry is piling up on the floor where the laundry baskets should be. My kitchen is sort of semi-tidy but the sink is full of dishes soaking after having been used in yesterday's lasagna making exercise. There are empty wine bottles on the table that need to be rinsed along with a dozen or so on the counter which need to be re-rinsed and put away.

I am finding it more and more difficult to even accomplish the one thing per day which is my usual goal. I am to the point where one basket of laundry is enough for a day. If there are two, one of them has to wait for another day. The same with folding; if I do laundry today, folding will have to wait until tomorrow, until I recover my energy. Wine bottles now sit on the counter for weeks at a time, waiting for my energy and enthusiasm to rise to a point where I can actually work with them.

There are all kinds of tasks like this. I have a wine kit in the spare room which I have been meaning to start for the last couple of weeks. The energy to attack this task is plain and simply lacking. I have paperwork to attend to, bills to pay, online tasks to complete with my email change. None of these is getting done in a hurry, except with some of the bills. They get paid. Others, not so much.

Then there are the real jobs, the stuff where I not only need help, but need multiple people to help. I want to raise one of my bathroom shelves and put a third shelf in there. I've wanted that to happen for a year or so now. In fact I still have the board from when I did the renovations, always planning at some point to add shelf number three. Yet there it is, still sitting behind the couch, the new shelf un-made, the existing shelf un-raised. It's just too much to handle.

Today I have to take my truck in to get the wheelchair lift and seat lift repaired. That means being at the repair shop by around 1:00 PM. In the wait time, I was thinking I could do some shopping at the wine store. Anne suggested we go see a movie. Right now all I can think of is taking a nap somewhere while they work on the truck. Either way, that task will fill my afternoon. I'll come home, make dinner, rest, and suddenly my day will be over, me having accomplished none of my backlogged assignments.

I wish I had more energy to do these things, or perhaps more enthusiasm for the tasks themselves. I need to put that laundry away, or perhaps I don't. Those towels won't fold themselves, but perhaps a Home Care Aide will do it for me. The bottles won't rinse themselves; maybe someone will come and clean them for me, putting them away too. In the meantime, I will do what I can. What remains undone simply remains. That's the way it is these days.

Thursday, 16 March 2017

Changing Email

The king is dead. Long live the king!

After more than 26 years, I no longer own the RAMA.COM domain. It has been transferred to new owners and I no longer have my old, original email address. I first acquired this domain in 1995, shortly before the arrival of Windows95. Already but this time I had been using this new “Internet” for research and email. Over the years I have used Uniserve for email routing as well as hosting my own email for a long time. At the peak of my technology usage, I had a full server room in my basement with multiple servers and full backup systems, all racked up neat and tidy.

Alas, times have changed and so has my life. Forced retirement thanks to ALS has meant I no longer need, nor have need of, major technologies. The value of the RAMA.COM domain, given my financial state, was such that selling it was the smart thing to do. So I did. My original agreement with the purchasers was that I would have access to for the remainder of my life. However there is no contract for this; it would appear their server side has changed, meaning I no longer have access to that email. So I am compelled to change.

This is a challenging change in some ways, one of so many in my life. It is another example of how having ALS has forced me to make changes I would otherwise not have to make. Without ALS, I would still be working and would not be interested in selling my RAMA.COM domain, regardless of price, until price got ridiculously stupid high. Now, however, the money is more important than the domain. I am living longer than expected; that costs money.

The reason behind the challenge in this change is that after so many years, "" is embedded almost everywhere in my online life. It is my login for many accounts. It is my online presence, even for this blog. I have changes all over the place which will have to be made over time. Things will break. Things will fail. Corrections will have to be made. Lots of them. It's work and effort I don't need.

The emotional stuff is secondary in this case. Yes, has been me for a long time. But not really. I am still who I am. Only my online name is changing. I will still be Richard McBride. I will still be "rmcbride" in my email address. Only my domain has changed. But that's it, really. It used to be MY domain. Now it is no longer. It seems I am losing something else which has been mine for a long time, thanks to this damned disease. I am so tired of this process.

On the plus side, my new email address is in place and working. I have contacted those people in my email address book who need the new address. My blog will still be here. Facebook will need only a minor change, along with NetFlix and a few other online accounts. Everything else will change organically. When it breaks, I will fix it, most likely with only a few keystrokes. At least this change is virtual, not physical. Once I get the corrections done, it will remain stable. I am grateful for that.

Wednesday, 15 March 2017

I'm Having A Bad Day

I am having a really tough morning, one of those mornings where the weakness seems so much worse than other days, where the tiredness is Mt. Everest, where the aches and pains are draining me. My arms were too weak to pick my legs today; I needed a lot of help getting dressed. Chewing a grilled cheese sandwich for breakfast seemed like a lot of work for little reward. My water mug, even my coffee cup, felt too heavy to lift.

This is really a sad, shitty way to go. It's even worse to do it alone, without emotional or physical intimacy. The tediousness of a slow, painful descent unto death, the weariness of a soul simply seeking rest, a respite from life; I am so done with with disease, yet I am in no way ready to die. I love life too much, yet I find myself thinking more and more that dying sooner, rather than later, would be a good thing.

I am at an angry place right now, frustrated by all that ALS has destroyed in my life. I'm tired of people telling me to be grateful for what I have instead of complaining about what I've lost, especially people who have lost nothing at all. Those with true life losses understand much better what I am going through. Of course I am angry. It's natural.

These are the last weeks and months of my life. I am starting to think seriously about my exit plan, even an exit date. I am wondering how long my arms will hold out, what I will do after they have failed me completely, how I will live then. I think about what will happen when I am in bed at night, alone, unable to roll over or shift, unable to adjust a pillow or lift a sheet. Already my quilt is getting to be too much to lift, too heavy for me to move.

Today is a bad day, and I will face it solo. There is nobody here to hold me, to show me the affection and intimacy that will swallow up these tears of pain. There is nobody here to help me up or down, one or off my couch, in or out of my wheelchair. I do this all alone. I'll tell you, it takes a shitload of courage and strength to keep going in the face of these insurmountable odds. I don't know why I do it, except I see no other way. I just have to keep going, for a little while. Then I will rest.

Tuesday, 14 March 2017

I Need A Haircut

I've been up and out of bed for over an hour now. This is my new regime, my new schedule. It's going to take me a while to get used to it. I want to get used to it. I want more life in my life, and sleeping at night seems the best way to enjoy more of the day, even though I seem to be naturally a night time person, like my brother Jim.

Now I have to figure out what to do with all these extra hours. Maybe having more naps? Maybe doing more shopping? I have to face the reality that I have very little in my life to keep me active. I know I "should" do something like volunteering or going to "day programs". The problem is I don't have the energy for concentrated activity, and I am not yet into basket weaving or making silly crafts.

Maybe I can work on getting someone new in my life, someone who wants to spend time with me, who can spend time with me, especially in the evenings. If anything is going to get me with this illness, it will be the loneliness. It's not just being physically alone, it is the lack of emotional companionship, the absence of someone beside me. With Katherine gone, all of that is gone.

I've said it before. I am a man who does best in the context of a committed one-to-one relationship. It's who I am. I do not do well single. I am not really up for playing the field or the dating game. I'm the kind of guy who likes cuddling up on the couch and watching a movie, especially these days. I'm the guy who likes to wake up to the same person each morning, sharing the same space, enjoying the same things as my partner. Just to be clear, that partner will be female.

These days I feel I have so little to offer. At least a couple of years ago, when I began my relationship with Katherine, I was stronger and had more endurance. The last couple of years have changed all that. I confess that I am not a highly marketable product. I am weak in body, although not in mind and spirit. I have a belly, thanks to spending all my time in this damned wheelchair. I tire easily, thanks to ALS.

Oh, and my hair needs cutting. Maybe that will be my goal for the day, cutting my hair. I can do that.

Monday, 13 March 2017

Vacation Booked

Booking a vacation is a whole lot more difficult for me than it is for most of you. There are many more things to think about.

Sunday, 12 March 2017


I had a new Home Care Aide today. This is not surprising, having gone from three day care to seven day care. The two HCA's I have already cannot cover all the days of the week. For now it looks like Cathy will stay with Monday, Micheal will do Tuesday through Saturday, and this new HCA will cover Sundays or those Saturdays when Micheal is not working. I expect there will be other changes over the next week or two as the Home Care agency gets the scheduling worked out.

Today's new addition to the team is a young lady from Belarus. She, her husband, and their two daughters came to Canada about five years ago, part of a general flow of immigrants from Eastern Europe which has been going on in Canada for well over 100 years. She was a nurse in Belarus however her English is not all that good. When they first came here, they settled in Quebec and learned French. Now she has moved to Calgary and must learn yet another language, English.

It is unfortunate for her, this language problem. She is well educated yet cannot put her nursing skills to work in Canada without Canadian certification. Getting that certification will require a substantial improvement in her ability to speak English. This kind of challenge is faced by all kinds of professionals coming to Canada from non-English speaking backgrounds. Fortunately her children will not face this challenge quite as much, having learned French in Quebec and now learning English in school here in Calgary.

The immigrant experience is a fascinating thing. To leave one's homeland for whatever reason, to try to make a new home in a country where you must learn not one but two languages, to fall backwards in life and career, all so that you can improve your life for yourself and your children; this takes incredible courage. Life in Belarus was likely difficult; it's one of the most authoritarian and corrupt countries falling out of the collapse of the old Soviet Union. Canada differs so much from that kind of background, and here they are trying to make it work.

She seems like a truly nice young lady, slender and blonde haired, smiling, gentle, working hard to ensure I am well looked after. I hope she works out. It would be nice for me, and for her too.

Saturday, 11 March 2017

Light At The End Of The Tunnel

I hate trying to describe the state of my strength in a blog post or in a comment to someone. Often the response is something to the effect of "you're still stronger than I am" or "you still get along well". This kind of feedback completely denies what I am trying to express, what this illness is doing to me. I want to talk about hand strength today. Remember, this is not a comparison with anyone else. It is a comparison with myself, from six months ago until today.

ALS has been roaring through my upper body for the last year or so, most notably since last August. My core muscles are virtually unusable these days; I need to be braced to sit up for any length of time. I tip over easily, so I am constantly seeking a hand-hold to stabilize myself. While my diaphragm is working, I now run out of breath after a mere moment of effort at something strenuous. Picking something up from the floor requires tremendous effort, not just to get down there but to get back up again. Thank goodness for the grabby sticks; I am using them more and more these days.

As to my shoulders and arms, I am noticing big changes in my hands of late. It's not that they are weak, per se. It's that they are not as strong as they used to be. They ache with almost every use. Even the simplest things are getting to be difficult. A cup of coffee seems heavier than ever. I cannot put the large bleach jug in my backpack for doing laundry so I transfer it to a smaller jug. The same with vinegar; buy large and transfer. I don't actually even do the transfer that often. Usually it's Home Care or a visitor who does this for me.

I can no longer pick up a box of full wine bottles although I can still pick up a box of empties, barely. Rather than pick them up, I sort of drag them up my legs and onto my knees, hoping the box doesn't tear along the way. I know have quite the collection of wine boxes with torn corners. Even the quilts and sheets on my bed are becoming too heavy to move at a single fling. Who would think of a bed quilt as being too heavy to move? Me, these days.

The toughest part, I suppose, is the constant ache and pain. My hands hurt. My fingers ache. My shoulder has this stabbing pain in the muscles near my bicep. Even my dead parts ache. My legs stiffen up overnight. Gas builds up behind my knee cap, making it severely painful to move it for the first time in the day. My poor, swollen, purple feet sting with paresthesia, that burning, prickling sensation you get sometimes when your foot falls asleep. Mine feels like that pretty much all the time.

All in all, it still pretty much sucks to be me. The only thing I have going for me is friends, family, and caregivers. I'm not done yet, but I am pretty sure the light at the end of this tunnel is not the sun.

Friday, 10 March 2017

My Nigerian Prince

It would appear that I am being cared for by a Nigerian prince! My Home Care Aide, Michael, revealed to me today that his is from a local royal family in Nigeria. He is, in fact, first in line for the throne. His cousin is the current "Oba", their local equivalent of a king. Michael, it seems, came to Canada to escape the responsibilities of his role, his own father being the first prince to the "Oba". He saw what it did to his father's life and decided he didn't want that, as a young man.

This "kingdom" of Micheal's is no small matter. In Nigeria there are a great many petty kings, each ruling a town or village of varying size. The position is hereditary and works within the construct of local government, bridging the gap between tribalism and democracy. As the wars within the regions have shown, it can be a shaky bridge. More than once Michael has suggested that returning to live in Nigeria has risks for him; now I understand better what they are.

Today we were talking about his plans. There is some pressure on him from family and local government to return to Nigeria and take up his position in the royal family. This is no small kingdom; it is a region about the size of Calgary, with about the same population.  He is thinking of going back, uncertain as to whether or not he wants to.

I ask him why not. He went on to describe a complex life where he would have to deal with the issues of witch doctors and superstition, corruption, and constraints on his own lifestyle. "If I wanted to go into MacDonald's for a burger, I could not, because that would not be right as the prince." He told me the story of another Oba in another town who tried to change the old ways and was killed for his efforts. Superstition dies hard in any culture, especially an uneducated one.

He is not sure if he will go. He is in his mid-fifties. He says he has had his opportunities in life. He is getting tired of the cold in Calgary and he misses his family in Nigeria. He has substantial property there. It would be a good way of life, except for the job of being next in line for the throne. Oh, and the possibility of getting killed if he steps too far out of line.

You see, we all have constraints on our lives. We all have opportunities in our lives. We all have choices to make. Mine are, in so many ways, simple choices. Micheal's choices are much more complex. Yet here we are, both trying to figure out what to do with our lives.

Thursday, 9 March 2017

Getting Up Early

It's 10:00 AM. It's Thursday. Why am I out of bed and dressed already? Oh, right, this was my own stupid idea, to have Home Care come at 9:00 AM and get me up, on Tuesday, Wednesday, Thursday, and Friday. I get to sleep in until 10:30 AM on Saturday, Sunday and Monday. Once again, my stupid idea to build some sort of normal life schedule, a regular daily routine.

While the first week or two of this new schedule will hurt, in the long run I think it will do me some good. Waking up earlier than late afternoon, having some daytime hours to do the things most people do, things like going to the doctor, or going to my ALS clinic, all before lunch. Having lunch instead of breakfast at 3:00 PM, that will be a good thing.

I already have plenty of plans for my day. I want to take my truck into the mobility shop where I have asked them to re-level the lift seat, it having bent from my weight over the last few years, and repair the frayed cable for the winch to lift my chair. That appointment is at 1:00 PM, a mere three hours from now. I'll need to leave by 12:30 PM, so I need to start getting ready by noon. That leaves me barely enough time to do a desperately needed load of laundry. You see, I'm already using this time wisely.

This evening company is coming. We are going to bottle a bit of white wine, just one set, about 30 bottles. This is my commitment to having smaller groups and different people over for dinner. Today, or rather this evening, lamb is on the menu. Between dinner and wine bottling, I have a lot to prepare for. It's going to be a busy day. Will they all be like this? Is this what happens when you get up early?

Wednesday, 8 March 2017


It looks like I have to go to Ikea soon. I managed to drop three small ice cream bowls from the first shelf of my cupboard as I was reaching for a cereal bowl behind them. The process of dropping them is irrelevant; the fact that this is another challenge for me, getting a bowl from the first shelf of my cupboard, shows where things are at these days. And it's another of the hidden costs of ALS.

Even my breakfast bowls have taken a beating over time. They are chipped and cracked, hanging on for dear life. I've already broken one, and replaced it. There are so many other of my dishes I have dropped that I am surprised I have a full set of anything left. Fortunately my dinnerwear is sturdy; I bought it that way on purpose. My coffee cups are fairly strong too although it only takes one fall at just the right angle to break off a handle. I'm talented that way.

It is this talent, this ability to lose, drop, and break things which leaves me with a cupboard full of odds and ends on a regular basis. Oddly enough, the damage and loss does not diminish my dish count; in fact it seems to grow larger day by day. The reason is simple enough. If I break or lose something out of a set, especially when I get past the second one, I often replace the whole set.

Periodically I just go through the cupboards and donate the odds and ends to the local thrift shop. If they can make a few cents selling it to someone who needs it, good for them. If they can't sell it, it will end up in the same place I would be putting it eventually. I am odd that way. I am perfectly willing to donate to the second hand shop, but I hate buying things there. My children love thrift shopping; they learned from my ex-wife. Yet I have always disliked it.

Oh well. Breakfast is over. My home care aide retrieved a bowl for me, one which is chipped twice along the edge, though not yet cracked. He even swept up the broken glass. I've had my cereal. Nothing else has been dropped, but the day is yet long. Next, grab the Swiffer mop and see if I can pick up those tiny, shiny particles glinting at me off my floor.

Tuesday, 7 March 2017

Who Will Care For Me?

I'm up, finally, at least for an hour or two, probably not much more. The virus which has, for the last 48 hours, been attempting a hostile takeover of my body seems to be losing, thanks to the miracle of even my severely compromised immune system. The raging sore throat is down to a minor tickle. The swollen feeling in and about my left ear has diminished, marginally. The headache is still here, less present than yesterday.

Today I did not have the energy or strength to get out of bed at all. It wasn't until about an hour ago that I thought it might happen. The combination of bodily need and hunger finally convinced me that the effort was worth the outcome. Since then I have managed to use the bathroom, make a cup of coffee, and warm up some leftover chicken dinner. It seems silly to be proud of this small bit, yet I am, having done it in the face of a tough virus and advanced ALS.

It does bring up a difficult question. Who will care for me? In this last couple of days, Jessica has spent a few terrific hours looking after me. My daughter dropped by for bit to make sure I was still alive and well. Home Care was here yesterday morning, when the worst of the virus set upon me. She completed her tasks and was on her way; I am a client, one of many. I spent most of the time alone, in my bed, sleeping on and off, wondering when my urine jugs would get so full that I would have to get up and empty them, wishing I had my laptop so I could write in bed, wanting something to eat while not wanting to get up and get it.

One change is happening tomorrow. Home Care will now come every morning, however their role is limited. The will do their tasks and leave. If I am sick, they are not here to nurse me back to health. If I am too sick to get out of bed, like yesterday and even today, they will leave me there, alone, to deal with my life as I must.

Who will care for me? I have no live-in care; I don't really need that yet. The proof is in the fact that I am up and about right now. I have no wife or partner. I messed that up a bit by leaving my wife and asking for a divorce 10 months before my diagnosis. Regardless, even had I her care I suspect I would not be doing as well as I am right now. All the care in the world won't compensate for a poisonous marriage situation.

My children do not live with me; my ex-wife won that battle in the divorce, with my daughter and her family living downstairs in what was once our family home. My daughter and ex-wife are living out the model of my ex-wife's mother and sister, the sister who gave up her life to stay at home with her widowed mother, never leaving home, never building any life of her own. At least my daughter has married and had children, a process she started while I was still married. I am glad for that.

Even if my daughter here in Calgary lived with me, she has a busy career and social life of her own. She is involved in a committed relationship which has all the signs of leading to marriage. I cannot ask her to give up her life for mine; that's just wrong and unfair.

It would be nice if I had the money to buy full-time, live-in care. Maybe I could get a trophy wife like all the rich men do. Of course then I would end up with a wife who is in it for the money, not for me. That would likely end badly. Divorce is messy and expensive. I wonder how Donald Trump works it out. It's interesting to note that he and Ronald Reagan are the only two US Presidents who have been divorced, and both of them are Republicans. Oh well, enough of that.

The reality is that I am the only one, when all is said and done, who will care for me. That is until I can no longer care for myself. Then I must choose between institutionalization or death. Do I accept the strictures and constraints of living in care, or do I choose that as my final scene? It's not a decision I have to make today, although I was wondering last night as I worked to breathe. It is, however, one of the many questions that I ponder on a steady basis, questions about how I live and how I die, all brought on by ALS.

Monday, 6 March 2017

Jessica Was Here

I am unwell again. I don't know if it is a new virus, or the same one which has been haunting me all winter. I awoke this morning with a raging sore throat, a low grade headache, and pain in my inner ear. This, along with the tremendous weakness that went further than simple ALS, was enough to keep me in bed, unmoved by the passing hours.

Where this renewed illness comes from, I know not. It might be that I have been very busy ever since coming back from the road trip. It might be that I have been entertaining for a few nights in a row, consuming more wine than I should. It might be that this damn virus has locked on to my ever weakening body, opportunistic enough to break me down but not strong enough to do me in. Regardless, it's back.

This morning, when my Home Care Aide finished cleaning my apartment she asked if I wanted to get up. I said no. That was at 11:00 AM. Next thing I knew it was 2:15 PM. My friend Jessica was due at 4:30. We were going to do dinner and a move. I texted her to let her know that there would be no dinner or movie. She came over regardless.

When Jessica arrived I was still mostly asleep, unable to rouse myself even for a decent greeting. Then she did something amazing, something which had an incredible therapeutic effect on me. She curled up on the bed beside me and told me I was going to be okay. She lay there with me for an hour or more, holding me, letting me absorb her energy and strength. Finally I felt like I could get up.

At that point, she became Nurse Jessica, helping me get up, get into my commode chair, get into the bathroom. While I was in the bathroom she changed the sheets on my bed and set it up so that I could go right back to bed if I wanted. I didn't. Her warmth and caring made me feel like I could handle being up for a while. She helped me dress, my energy level still so low that almost everything felt like climbing a mountain.

We had something to eat, the remnants of my fruit plate from Saturday night. She made me coffee. We talked. We ate the cannoli she had picked up on her way. Then she suggested we watch a movie. She helped me transfer, then curled up beside me as we watched Dirk Gently on Netflix. Again she energized my enervated soul. My body is still exhausted, but my spirits were incredibly comforted by her simple act of sitting with me, holding me, listening to me.

I am still and once again exhausted, ready for sleep after only four hours awake. Jess has gone home to her husband, Todd. Yet in the few hours she was here she gave me so much. She made me feel safe, warm, enveloped. She listened to my weariness, cared for my weakness, shared my space quietly. For this, I am completely grateful.

Sunday, 5 March 2017

How Long?

I'm thinking a lot about "how long" these days; not so much about how long I will live, there are too many variables for that, but "how long" about other things. For example, this morning I was going to go to the toilet, but I had a heck of a lot of trouble pulling my underwear off. It's getting near impossible. I wondered how long it would be until I couldn't do it at all. That's the kind of "how long" that dominates my ALS thinking these days.

Yesterday I found that another ability had been lost to me. For some time now I have been having more and more difficulty transferring myself from my manual chair to my bed using the transfer board. I've taken to using the sling and lift more and more. When I tried it yesterday, using the transfer board, I couldn't do it at all. The uphill slope was just too much for me. I can do it if someone helps me, like David did so much of on our road trip. Alone, I cannot do it at all.

I wonder how long I will be able to drive. It's already near impossible for me to get into the truck without help, but there are a couple of workarounds I am working on. Regardless, getting into the truck is only half the battle. I know that driving is still possible for me, but I can see a difference in how things are going. I am getting worried, wondering when that difference will be such that I truly hang up my keys.

What about cooking? How long will I be able to cook my own meals? Right now I can do a pretty decent job of it, as long as I take my time. It is, however, getting tougher and tougher to do all that is needed to make a decent meal. It is especially difficult first thing in the day, when I am exhausted from getting dressed. So how long will it be until I have someone help me make breakfast? Not long, I think.

Speaking of getting dressed, I am already allowing Home Care to help me dress. It's a question of energy usage. Yet again I ask myself, is this the end of it? Have I reached that "how long" point? When will I no longer be able to dress myself at all? There will come a day, sooner that I would like.

Those are the endpoints I worry about these days. I am certain I will die; when doesn't matter. I am uncertain if I will ever lose my ability to eat. Breathing problems might get me first, or I might die from a heart attack. You never know. But I know that, at some point, my arms will grow so weak that feeding myself will be a challenge. How long will that be?

Saturday, 4 March 2017

Now You See It

My hands and fingers hurt today, that aching kind of feeling I get in my muscles thanks to ALS. My arms too, both left and right. This is kind of problematic, as it means there is loss taking place on my right side, in my right arm, very clearly now. This is what happened to my legs. The left went first, followed almost immediately by the right. The difference was subtle; I'm probably the only one who noticed it.

It's really difficult to understand this disease, to see if for what it is, for when it comes, unless you are paying very close attention. For me the progress has been so subtle that I have been the first to feel it, long before the neurologist, and well before any lay person. I feel it much more than I see it. I can tell when something is changing, even when others are not so sure. Of course it's easy to peg some of these changes as the simple effects of aging. I know my body pretty well. Aging may play a part. Perhaps my arms and fingers are sore today because of age and arthritis. I doubt it. I can tell the difference.

I have a friend who has terminal cancer, treatable, they can slow it down, but terminal in about 8 - 10 years. It will never be stopped. That same friend has two replacement hips and one replacement knee. She is younger than me. Today I saw a picture of her out on the ski slopes. There she is, terminally ill, filled with replacement parts, able to hit the slopes for a terrific day. Oh how I envy her.

My terminal illness does not work that way. It cannot be slowed, treated, ignored, replaced. I can't hope to get back on the slopes one day, although cross country was always my thing. As I looked at her, I thought once again to myself how a nice, simple, terminal cancer would be so much better than this. Regardless, with my luck I would get one of the nasty ones with lots of pain and suffering.

So I go out into my world today, alone in my pain, alone in my suffering. Of course, so does everyone else. We all carry our own suffering with us, be it physical or mental. Mine is just made manifest in a failing form. In my suffering, I find little or no hope. I cannot look forward, there is nothing to see. All I can do is try to enjoy what I can from today. I enjoyed seeing that picture of my friend skiing. I enjoyed hearing from my daughter. I am going shopping for a few things, something I always enjoy.

That enjoyment will be as private, as hidden as ALS. Some parts will show. Some smiles will be obvious. Some of the joy will dwell deep within me, reminding me that life is still worth living, in spite of the suffering and pain. That joy is mine. I plan on keeping it.

Friday, 3 March 2017

Dream Chair

Last night was not a good night, at least not for sleep. It was a great evening before bedtime, with Dan and Anisa here to do a little wine bottling and to enjoy dinner. I'm trying to do more small group things. It's easier on me. It also means no more big wine bottling parties; just parties. The wine bottling will become a small group thing done with a lot less pressure.

It was afterwards that last night got difficult. I managed to get to sleep okay, but I was up every hour or two, not to pee, just awake for no good reason. Actually there might have been a good reason. I was having bad dreams again last night, the confusing ones that are difficult to explain and even more difficult to understand. The only real significant part of my dreams last night is that I had one where I was in a wheelchair.

This wasn't a one shot deal. In this dream I was in a wheelchair and my older brother, Adam, was wheeling me into a bank where we were doing a project involving network and other wiring. Why he was there, I don't know. Not his kind of project. Why I was there, also I don't know, since I did nothing but sit, slumped down, in the chair. That is, until I had to go pee. Then the dream went off on a tangent and I woke up, to go pee.

The whole wheelchair thing, the whole dream, repeated itself when I went back to sleep. Me, slumped in my wheelchair, Adam pushing me into the bank to see someone important, me waking up to go pee, only this time I didn't wake up and didn't have to pee, so the dream went off on a tangent again.

For me the whole issue is that I am in a wheelchair in my dream. This is a first for me. Never before have I been in a wheelchair in my dream. I've had the cane in a dream, but not the chair. I think my subconscious is finally integrating the idea of me being in a chair. On the other hand, I did not stay in the chair; I got up and walked out of the bank meeting to find a bathroom, while in my dream. My thinking is my subconscious may realize I am in the chair, but really doesn't like it. My conscious mind feels that way too.

Thursday, 2 March 2017

The First Hour Of Each Day

What if I told you that, every day, for the rest of your life, the most difficult hour of your day would the first hour of your day? What if I told you that during those first 60 minutes you would break into a full sweat from exertion at least three different times, doing three different things, yet accomplishing nothing more that going to the toilet and getting dressed? What if I told you that, at least two different times, you would experience a panic fear of falling over, tipping over, tumbling over, whatever? How would it impact you if I told you that, in spite of all of this emotional and physical exertion, you would get weaker and weaker each day?

That is what the first hour of every day is like for me. The simple act of sitting up in bed takes multiple tries, pulls on my bed rail, twists to get my body into position. The transfers to my commode chair causes both fear of falling and sweat from exerting. Getting my underwear off so I can go to the toilet is exertion enough to make me break into a full sweat once again. Then I have transfer back onto my bed and go through the toil and trouble of getting myself dressed. Along the way are the exercises in washing, brushing teeth, rolling from bathroom to bedroom, and the inevitable picking up of things I drop.

The outcome of all of this exertion is that by the time I get to my kitchen, I am too exhausted to bother making anything to eat. Even getting breakfast cereal down from its place of easy reach on top of my freezer is fraught. Thanks to the mornings activities, my hands are shaking. Grabbing a box and pulling it down often leads to dropped cereal. Toast in the toaster? Requires opening the fridge where I keep the bread, opening the bread bag, rolling over and reaching for the toaster, pushing down the handle. All of these things have become increasing difficult of late. My upper body is failing me completely.

Home care is some help with this. In fact they are about to become an increasing help. It's getting too hard for me to do it alone. Right now I run this morning gauntlet solo four days out of seven. My hope is that, by the end of next week, I will have morning help for the full seven days. I am at the place in this disease where I need it.

This next paragraph is all about what I want; selfish but true. My goal is to have home care come in earlier Monday through Friday, or more likely Tuesday through Friday, say at 9:00 AM or so. I want to sleep in at least until 10:30 on Monday; Sunday evenings are often spent with guests, and more likely noon on the weekends. I want them to come and help me on those days too. When they are here, I want them to help me get up and onto my commode chair. While I am in the bathroom, I want them to make me some breakfast. Then I will need them to help me dress and make the transfer to my wheelchair. All of this, of course, is on top of my regular shower routine on Monday, Wednesday and Friday.

I am asking for a lot, all of it to ensure that I don't start my day exhausted, that my first hour is not my worst hour. It's where I am these days.

Wednesday, 1 March 2017

Time To Ask

I'm in a good mood. Turns out my life may be getting back to something resembling normal. Today my Home Care Aide, Michael, came back to me. He had gone on vacation to Nigeria in late November. When he returned in early February, I was away on my road trip. So this is the first time he has been here for three months. It was nice to see him.

I've come do a decision about home care. I am going to ask for home care five mornings a week. I would like to keep my Monday, Wednesday, and Friday shower and exercise routines in place. I would also like to add someone to come in and help me dress on Tuesday and Thursday. Getting dressed in the morning is one of the most exhausting things I do. With someone to help, it will leave me with a bit more energy for doing something like making breakfast.

I'm also going to ask if the HCA's can either make breakfast for me or help me with my breakfast. It's not a lot of work for me, but once again it's about energy. In the mornings I have some energy, but I need food energy. On the other hand, after dressing I am usually to tired to bother to cook, or eat. If I get some help with this, I may eat a bit more, and feel a bit less exhausted.

The final change I am going to ask for is in timing, but without losing my regular care givers. I'm beginning to think that getting up at 8:30 AM might not be such a bad thing, especially if I go to bed around 10 PM at night. That gives me 10 hours of sleep plus a bit for settling down. I can take a two or three hour nap in the afternoon, and still have a full day and evening.

This may expand to include Saturdays and Sundays, but probably with later times, perhaps not until noon. Also, I need to coordinate it with my existing HCA's. I don't want to lose either of them. This may not all work, but I am going to ask. It's getting to where I need more help. It's time to ask.