Sunday, 31 July 2016

Weekend Over

Home, a couple of hours late but no worse for the wear. The original plan was for us to leave Jim's place, about a 4 1/2 hour drive, putting us home at 5:20 PM. Then I would write. As it happened, we had a small issue with my truck, a dead battery, which delayed us for a couple of hours. It seems my lift seat, when in the mid-way up position, pushes on the seat adjustment button once the door is closed. This meant my truck seat, while in the fully down position, kept working away at getting lower. The electric motor used to make this adjustment simply consumed all the battery power over night.

You might well wonder how the seat got in the halfway up position. Simple, I put it there to get from the front seat into my power chair. I had no idea this would trigger the constant running of the adjustment motor. Nor could I, or anyone else, hear that motor. It is very quiet, even quieter after the battery is dead.

You might also wonder why I didn't write my blog while waiting for the battery charger to resolve this issue. That too is a fairly simple thing. Katherine said "I packed everything, including your computer, and I am not going to unpack it again." I have come to learn that a statement like this from Katherine is non-negotiable. So I sat, enjoyed the sun, rested, and waited.

At about 2:30 PM we got under way. The drive home was uneventful except for the storm lingering still over Calgary. We stopped for coffee a couple of times, taking about a half hour longer than the base drive time. Adam drove. I rested. Katherine rested too. I was an easy day, once the truck got going. Just the kind of way you want to end a weekend of camping.

Saturday, 30 July 2016

Camping Weekend

I'm camping! This is not glamping, not staying in some fancy lodge beside a lake with firewood provided and mosquitoes destroyed by spray. I'm camping out on Jim's property about an hour north-east of Edmonton, about 15 minutes away from the nearest town, Smoky Lake. There are critters wandering about, bugs flying about, birds flying about.

Jim has for or five trailers and RV's parked in the central meadow of his 80 acre block. Adam is in one, Katherine in another, and Jim in his own trailer, a really nice trailer. Yet all of these trailers, with their indoors safe from bugs and beds with mattresses, have doors which are only 24" wide. My wheelchair needs a 28" door.

Jim tried putting up a tent for me; it might sort of work, except once you get my sleeping cot, my wheelchair, an air mattress for Katherine and the rest of our gear into that tent, there is no room for anyone or anything to enter or leave. So we took a look at the back of my truck. we parked it beside the RV in which Katherine was sleeping, so if I needed help, I could call out loudly and she would hear me.

We opened up the back of the truck and took the last few items of gear out of it. Then we inflated the air mattress and set it up in the back of the truck. Once the air mattress was in place, I drove my PWC next to the tailgate and transferred. From there, Adam and Katherine dragged me up and onto the mattress with my sleeping bag in place. In the excitement, they over-pulled, so Jim grabbed my feet and pulled back, making the final adjustment. They closed me in, and there I slept.

There were a couple of minor overnight issues. Going pee on an air mattress which slopes to me middle, without being able to properly turn sideways, is a bit of a crap shoot. I messed up a couple of times, so ended up stripping out of my clothing in the middle of the night. Fortunately my sleeping bag missed the worst of it. And rolling over on this sloped, spongy, soft surface was just too much more me, so once in place I stayed there.

On the whole I continue to be reminded of how fortunate I am. I'm here, camping. I have Katherine with me. Adam is more than just a little bit helpfu. Jim is a great host. We sang Karaoke last night until nearly 2:00 AM. I'd call that a good start to a camping weekend.

Friday, 29 July 2016

Lego - A Good Idea

We are headed off to Edmonton, to my brother Jim's place, Adam, Katherine and I. It will be about a 4 hour drive to get to Jim's 80 acre site north of Edmonton, a drive that will take us up the middle of Alberta, through Red Deer and north, through Fort Saskatchewan. It should be a wonderful drive.

This will be a three day excursion, with us returning here on Sunday night. I'm hoping for Internet. Jim has a connection, but remote connections are always difficult. There are other difficulties too. This trip sees me taking my commode chair, my power wheelchair, my manual chair, plus a cot, a sleeping bag, and all my regular travel gear. It's a full load.

The wheelchairs have become so central to my life these days that I can neither imagine nor remember what it is like to live without them. I have this love/hate relationship with my chairs. They immeasurably improve my quality of life, giving me a range of mobility and freedom which would otherwise be lost to me.

Recently I saw a Lego figure in a wheelchair. I was quite captured by it, by the idea that someone in a wheelchair would be normal enough that Lego would make it a staple of their collection. I decided I would like to give one of these figures to each of my children and to each of my grandchildren. That's a total of 8 figures. Then I started thinking about the potential for future grandchildren, so I decided that 15 would cover all future possibilities.

It's kind of cool to think about it, that a grandchild possibly born after I die, or perhaps even a great-grandchild, might get this memento of me, long after my life has ended. So I sent an email to Lego. They will give me the figures for free, but would prefer that I purchase the wheelchairs. To purchase 15 wheelchairs, with the figures, it will cost me $115.00 plus another $5.00 for shipping and handling.

My only concern is that this might be USD, which would mean a 30% increase. Nonetheless, it seems like a very special idea, a very special way for my children, and their children, and perhaps their children's children, to remember that I was once here, that I once lived. I think I am going to do this. It just seems like a good idea.

Thursday, 28 July 2016


It's been a very busy day today. Almost as soon as I was up and dressed, my friend Bobbi stopped by for a visit. After she left, Adam, Katherine and I started to load the truck in preparation for out weekend up at my brother Jim's place north of Edmonton. First we got the cot, sleeping bag and air mattress out of storage to put in the back of the truck.

This part is interesting. We had to measure the height of the entry into the back of my truck bed. That entry is 38". Next we measured the height of my PWC; it's 41". However if we lean the chair back, we can get the height down to the required 38". We knew it would fit. Then we got to work on acquiring a system to get my PWC into the back of my truck.That's when the fun began.

First, at my insistence, we went to Canadian Tire to look at ramps. My idea was to get a simple set of loading ramps, the kind I've used for loading a quad into the back of a truck in the past. After all, my PWC weighs a heck of a lot less than a quad. We purchased, and came home with, a set of ramps at a cost of $150. Both Katherine and Adam said I should call the ALS Society first to see if they had something, but I wanted to do this my own way with my own stuff. I can get that way sometimes.

As it turned out, the Canadian Tire ramps were completely unsuited to the operation. After several rather risky tests with Adam at the controls of the PWC, we determined that that slope was too steep and the access to the ramp too narrow. So we returned the ramps, and I called the ALS Society of Alberta.

Jeremey, the equipment manager, immediately knew what I was trying to accomplished once I described my situation. Not only that, but he had an immediate solution for me, a folding ramp that is designed for power wheelchairs and wheelchair access. It's a one piece ramp which folds up when not in use, with safety edges on the side. While not perfect, it seems to work pretty well.

All I have to do is get my emotions out of the way and learn to call the ALS Society first whenever I need a piece of equipment. After all, I'm not the only person in southern Alberta with ALS. If I need it, odds are someone else has needed it too. But I really do want to look after myself as much as I can. Oh well, another emotional conflict within me. That's not really all that new.

Wednesday, 27 July 2016

Richard Is Living With ALS - The Movie

We had a guest for dinner last night, a young man called Chad Tweten and his girlfriend Nicole. Chad is the fellow who has been working on my video for Rock Out ALS, an ALS fund raising concert in Woodinville, WA. He has finished the video, and you can find a link here, or at the top of the column on the right of my blog. I encourage you to watch it.

The goal of this video, intended as it is for a fund raising effort, is three fold. First, I wanted people to know what it's like to go from a vibrant, active life to dealing with, and living with, ALS. Second, I wanted people to see, graphically, how hard it is to live with ALS, both physically and emotionally. Finally, third, I wanted People with ALS, especially newly diagnosed PALS, to know that there is life after diagnosis, and that having a terrible disease does not mean you should roll over and die. As I say in the video; your going to live until you die, make sure you live before you die.

Here is what I would like you to do. First, watch the video. Then...

  1. If you are anywhere near Woodinville, WA., head over to the Rock Out ALS Concert this coming Saturday. While you are there, make a donation to help PALS, and to aide in research into a cure for ALS.
  2. If you want to support ALS locally, make a donation to your local ALS Society. To donate to my local ALS Society, go to The ALS Society of Alberta and click on the donate button. Make sure you tell them you saw my video and that you are donating in support of me, or whomever you are supporting.
  3. If you want to support me personally, as I work and fight to live with ALS, you can click the Donate button at the top of my blog. Give what you can. I appreciate it. A hundred dollars will help with household expenses. Five hundred dollars will allow me to go visit my Mom in Vancouver. Two thousand dollars will help me take another road trip. If you are really wild, you can help me raise $5,000 USD  so I can take a cruise to the southern tip of South America, one of my bucket list items. 
More importantly than all of this, watch the video. Learn about ALS. Then share this post, or the video, with everyone you know. The more that people know about ALS, the sooner we will find a cure to this awful disease.

Tuesday, 26 July 2016

It's A Tough Day Today

One of the markers I have for my own progression is stolen from the book, Tuesdays With Morrie. It's where Morrie says to his friend, "I know this disease doesn't have me as long as I can wipe my own ass." It like that line. It points out with crystal clarity a breaking point, a place where I will have to recognize that living with ALS has overtaken me.

This morning I could not wipe my own ass. I tried. I did a fairly good job, but I just couldn't seem to get it clean. I had to ask Katherine to help me finish the job. This is disappointing, devastating in some ways. It's only a one off, but that's how everything happens with ALS. It happens once, then it doesn't happen for a while. Then it happens again. Then the intervals get shorter and shorter until that failing becomes the new norm.

On top of needing help with cleaning myself today, I needed help sitting up. I've been wobbly for a while now, uncertain when pulling on a shirt, fearing that I might tumble sideways. Today it wasn't uncertainty. I was certain I would fall sideways while pulling on my shirt. I did. I also fell sideways when pulling on my compression socks and when pulling on my underwear. My balance just seems to have escaped me today.

In the end, Katherine once again came to my rescue, stabilizing me, steadying me as I dressed. I still managed to tip over a couple of times, even with her there. I'm a big guy, and like the giant tree at the hands of the lumberjack, once my base is gone I start to tip, and once I start to tip I keep going.

My emotions are fraught as well. I am barely holding it together today. There have already been a couple of bouts of tears, frustration that not only do I have to deal with ALS but I have to deal with the rest of life too. It's such a difficult thing. I really am ready to give up. But then again, no I am not. I just wish all of this were easier.

Monday, 25 July 2016

Cursed Extroversion

It's been a busy few days, and a busy week to come. I'm not sleeping enough, and not sleeping well. It's just the way it is when I get too excited. Having my friends Chris and Dianne staying over is very exciting for me. Chris has been my friend for more than 30 years. I doubt if any of my children, except perhaps for Mary, can remember a time when Chris was not my friend.

He and Dianne are out today, visiting Dianne's family here in Calgary. This area is her home town, so she has lots of family nearby. In fact she and Chris could stay any number of places, so I am honoured and happy to have them here. They will stay until Wednesday.

My brother Adam is coming here as well, either tomorrow or Wednesday. I have managed to mess that up on my calendar. My original notes said he was coming on the 27th, but my follow up notes say he will be here on the 26th. No worries. I am sure we can work something out either way. Regardless of outcome, I am looking forward to Wednesday, with both Adam and Chris here. It will be a good day for me.

It continues to be the people in my life that make a difference to me. My quality of life is continuously deteriorating, but the enjoyment I get from friends and family, especially those who come to stay for a day or two, continues as a highlight of my life. These days my world is getting ever and ever smaller, like the concentric rings on a record, the needle of my life moving ever inward.

I need these people in my life, these people who have been with me for years. I need their companionship, their support, their love and caring. I need to know that my life means something, that I am not an empty shell on the vast beach of humanity, that I am more than just an old man dying of a sad disease. I need to be a person, and for me, that only really happens when others are with me. Oh curse this extroversion which is my life. It seems I need others to make me feel that life is worth living.

Sunday, 24 July 2016

Managed Emotions

I have limits. There is only so much I can take, both physically and emotionally. Those limits are fairly close. Reaching them is easy; a busy day, a late night, a strong emotional interchange, even just sitting and thinking sometimes. In fact some of my worst time emotionally is when I am home along at night, just thinking about stuff, my life, what's happened to me.

This week I have a run of very busy days. Somewhat like a small child, I get over-excited by these days, over-stimulated. I run out of energy, and emotional capacity, very quickly. So I need a break, a real break, in between things. That's what yesterday was, a break. It wasn't a complete day off. I did go shopping, and Dion came over to help straighten things up after the party on Friday. But it was a break.

The emotional stuff can tear a lot out of me. This has had the unfortunate effect of making me careful around committing those emotions. Plus I take medications these days to keep my emotions in check. This means I cannot express what I feel as well as I used to. Perhaps I don't even feel what I used to feel as well as I used to. This disease has really messed up a lot of stuff in my life.

Add to that that being tired makes me cranky, and all of a sudden you have a guy who seems hard, mean, and even cruel at times. It doesn't happen very often. Most people never see it at all; it looks more like humour and my usual inappropriate behaviour. Nonetheless, I can feel it on the inside. I can feel those walls protecting my emotions, my emotional state. I know that I am limiting myself, managing what I have to use it where I need it the most.

I wish I could give more, more of myself, more of my emotions. I can't. They're pretty much all tied up in dealing with ALS. What's left are not always the good ones. And that means I have to manage them even more.

Saturday, 23 July 2016

Aches And Pains

The whole region of my left shoulder is hurting me today. Right under my ear the muscle cramp begins. It's not a tight cramp, just a sort of slow binding which hurts when I move it. The pain sort of slides down my neck and into my shoulder muscles, further making its way into the upper part of my left arm. The whole area is reluctant to move, aching with every clinch and twitch.

I don't think it's the way I slept. Nor do I think it's the amount of time I spend in my power wheelchair yesterday versus my manual chair. There is no individual action to excuse away what is happening. This is just another reminder of the slow muscular deterioration which is going on in me. It's ALS, but it looks like it could be so many other things.

In fact it actually could be other things. But how would I know? How do I tell when an ache or a pain is simply part of life, or part of ALS? There is no distinguishing marker, no sign that this is different than that, no way of determining if this is progression, or just getting older, or how I slept, or anything else. In the absence of further proof, I will just go with the disease. Eventually it's always the disease, if not for today, at least for some day in the future.

A friend of mine asked me what I would do if a treatment were suddenly discovered with could stop the progression. Existing dead motor neurons would remain dead, but no more would die. It's a tough question. Right now I am living a fairly decent life. If I were to remain this way, I could probably live with it. On the other hand, I am coming to a tipping point, a place in my life where I probably wouldn't want to remain. Then it would be a tougher decision.

It's not just the state I am in now that matters. It's the ongoing progression, the clear and present proof that I will get worse. It's not just the loss of muscle strength, it's the aches and pains that go with over-working what I have left. If the disease were stable, would I have to live with this pain and soreness for the rest of my life? If this disease were stable, would I be able to strengthen those muscles with still worked?

Of course, it doesn't really matter. This is mere speculation. I doubt there will be a treatment in my lifetime, let alone a cure. No, I suspect progression will remain for me, the black demon on my horizon, forever approaching, forever destroying. It does no good to think otherwise.

Friday, 22 July 2016

The Last One To Die

Private George Lawrence Price was the last soldier of the British Empire to be killed in World War 1, a Canadian born in Nova Scotia and conscripted, forced to go to war. He was shot by a German sniper at 10:58 on November 11, 1918, a mere two minutes before the armistice went into effect.

On August 18, 1945, U.S. Army Sergeant Anthony J. Marchione died during a reconnaissance flight over Tokyo. Marchione actually died two weeks after the Japanese had accepted the Allied terms of surrender, but two weeks before the formal cessation of hostilities. He was the last American killed in air combat in World War II.

Charles McMahon and Darwin Lee Judge were the last two US soldiers killed in Vietnam during the Vietnam War. The two men, both U.S. Marines, were killed in a rocket attack one day before the Fall of Saigon on April 30, 1975, an event that marked the end of the Vietnam War.

History records, time and again, the names of those who were the first to die, and the last to die, in the innumerable wars which have plagued the history of mankind. History also fails to record so many who died in between. Only in recent history, perhaps in the last 200 years, have we posted memorials to the lost, noting the time and date of their demise. There are even more who lived in died in wars past whose names are recorded nowhere, who remain unknown.

I am a soldier in a war, a war which claims casualties every day. Their passing is not marked by any form of memorial, by any form of celebration or remembrance. They are those lost to ALS, a disease with no cure and no treatment, a disease which claims its victims relentlessly, without compassion or cause.

There was a first person and a last person to die from AIDS, at least here in North America. There will be a last person to die from ALS, perhaps worldwide. One day there will be a treatment. One day there will be a cure. Like polio or whooping cough or tuberculosis, one day there will be simple treatments to prevent death or to prevent the disease altogether.

I do not wish to be that person. I want to be the first person cured of ALS. One of the reasons I am so reluctant to leave this life is that I keep hoping, all the while knowing that there is a very real chance that I might be the last person to die from ALS. With my luck, the day after I take the pills and go to sleep forever, some pharmaceutical company will announce a successful treatment, followed soon thereafter by an announcement of a cure. I sure as hell hope it works out better than that for me. I am not all that hopeful, yet I still hope.

Thursday, 21 July 2016

Happy Birthday To Me

It's my birthday today. I'm supposed to be happy, and in many ways I am. I'm alive, something I would have bet against when I was diagnosed 44 months ago. I am loved, loved by many people near and far. I am well fed, well dressed, and well cared for. I have a lovely home, a wonderful woman, and, still today, the freedom to come and go as I please.

So why have I been struggling with sadness and depression these last few days, and especially last night?

First of all, depression is simply a part of ALS. Having this disease, without any of the mental stuff that goes with it, can be pretty depressing. So no matter what, you can always expect a layer of sadness within me. It's just a part of living with ALS. But there is much more than that going on with me right now, and, as you might expect, this current bout of sadness is more than just one thing. It's many things, besides the personal sadness I experience in life.

I think the big one is the new equipment that has come into my life over the last few days. Notwithstanding that this gear makes my life easier, it is yet another reminder of where I am headed, of how different my future looks as opposed to what I expected. This has happened before, that a major addition in equipment has hit me hard. This time it's no different. I have a short future, and it's filled with ever increasing amounts of medical equipment.

It's more than that, though. Oddly enough, my birthday is kind of sad for me too. I think of all the other people I know with ALS, the ones who are at their life's end, the ones who are struggling to keep going, the ones in hospitals or care homes. I feel guilty, in a way, perhaps a kind of survivor guilt. Why am I still here when so many other good people have gone? My birthday reminds me that I am still alive. Why aren't they?

Then there are the personal things in my life, the myriad issues small and large which seem magnified by this disease. I am constantly shaking, dropping stuff, breaking things. It's getting worse. Some would say that everyone goes through this, and they would be right. It just seems magnified for me, larger, a bigger issue, thanks to ALS. I struggle with aches and pains, some from ALS, some from life. There are so many other things, too many to list here.

Today is my birthday. Katherine has already given me a wonderful gift. Dozens of people have wished me well online. I expect to hear from my children today, always a highlight for me. In fact I've already had a birthday wish from one of them. I'm alive. I'm mobile. I'm even going to get my driver's licence renewed. I have a lot to be thankful for. It's just hard to get past the gloom sometimes.

Wednesday, 20 July 2016

I Have A Headache

I have a headache, the kind that starts at a point source and radiates outward. This one started about a quarter of the way up my skull above my right eye, and felt like a nail being hammered into my head.

I have a headache. And my left hand hurts, below the thumb where I am almost certain I have a broken scaphoid bone but the doctor said otherwise when I went to the ER.

I have a headache. My left hand hurts. And my left shoulder hurts too, starting deep inside the joint and creeping its way down to the top of my bicep, all a function of overworked muscles slowly failing on me.

I have a headache. My left hand hurts. My left shoulder hurts. So does my right shoulder, only not as bad as the left. My right side is generally better than my left, but those muscles are wearing out too, as ALS slowly takes over my upper body.

I have a headache. My left hand hurts. My left shoulder hurts. My right shoulder hurts. Oh, and my left bicep has this sort of nearly imperceptible yet consistent ache, an annoyance really, but there you go, another pain, another day.

I have a headache. My left hand hurts. My left shoulder hurts. My right shoulder hurts. My left bicep aches. And the muscles in my butt, the ones on either side of the base of my tailbone, sting from the constant pressure of sitting, this in spite of the $600 specialized wheelchair cushion beneath me.

I have a headache. My left hand hurts. My left shoulder hurts. My right shoulder hurts. My left bicep aches. My butt muscles sting. And my feet feel like someone is shoving pins and needles against the skin, constantly pricking, ever so lightly, just enough to be a distraction but not enough to be truly painful.

I'm going to take a couple of Tylenol. It's the breakfast of champions, right? And ALS is a painless disease, right? God made a mistake when he made man, or at least me. He should have made it so that, after you get a disease like ALS, you get a pass on all other aches and pains. But this is the way it is. Today.

Tuesday, 19 July 2016

Atrophy Is Happening

Yesterday was a tough day. Not physically. It was an emotionally tough day. In the physical sense it was a great day. I got out with Katherine, got some needed errands done, stopped at the Dairy Queen for a treat, and went to trivia. All good.

The emotionally tough day started on one of the errands. Every year in July, I get new compression socks. Alberta Aids To Daily Living, or AADL for short, gives me three pair of compression socks per year. I got three pair two years ago, three more pairs last year, and I get three pairs this year. This is an important progression. Two years ago I was washing compression socks by hand pretty much every other night. Last year I went to washing them in with the other laundry, only twice a week. This year, with even more socks, the pressure is off when it comes to washing them.

We went into the KenRon Pharmacy for a fitting, something they do each year to ensure that the socks are the right size. For the last two years, I have taken a Large. This year the told me I needed a Medium. My legs are shrinking.

Every morning when I get up, I look at my body in the full length mirrored closet doors a few feet from my bed. I gaze while sitting, not because I want to, but because I am seated, resting between getting up, getting dressed, or getting into my wheelchair, or now my commode chair. As I sit, I notice the massive bulk of the core of my body, the obesity which cannot be denied. I also notice my legs and arms. I've noted small changes in their size as time has gone by.

Just the other morning I grabbed my leg to lift it and put it into the leg hole of my underpants. As I grabbed it, I thought to myself how skinny it looked. Then I reminded myself that I might be over-estimating this change. Others often tell me they really can't see the difference. Except for my belly. Some like to tease me, saying that I might think my arms look smaller but they aren't, and that my belly is the only part of me changing size, in the wrong direction. They don't often see my legs.

The trip to KenRon changed that. My legs are really getting smaller. Atrophy is really happening, although very slowly. I notice it because I am most intimate with my body. My neurologist once said the best thing possible to me; "If you think it is happening, it probably is." I thought my legs were getting skinnier. They are. I think my arms are getting smaller. They are.

When you get that this disease is taking its toll, physical proof, it's not your body that feels the pain. It's your emotions, your spirit. Feeling like something is happening, you can dismiss that feeling. Knowing for a fact, seeing it in black and white, that you cannot ignore. Atrophy is happening.

Monday, 18 July 2016

Commode Success

I can remember the first time I chose to use my wheelchair. It really was a choice. Since this disease doesn't happen in dramatic stages, I didn't have to use the wheelchair all at once. There just came a time when using it was easier than using a walker. I also remember that once I chose to use it, I never chose to walk, ever again. It was just easier to use the wheelchair.

Today I chose to use the commode chair. I transferred to the now correctly adjusted chair and wheeled into my bathroom. I rolled up to the sink and brushed my teeth. I emptied and cleaned my jug. I positioned the commode chair over the toilet and waited, fortunately not for too long, for things to happen. And finally, I rolled into the shower and cleaned myself.

The shower was wonderful, luxurious. For the first time in a very long time, I was able use the rain shower head, letting the deliciously warm water course over me. I was able to shift, to move about, so that I could wash my back as well as my front. I even had both shower heads, the hand wand and the overhead, going at the same time.

I could not do this while seated on the shower bench. As I have become weaker, there is less and less room for movement while seated. The position of the rain shower head meant that it mostly just showered my knees unless I leaned forward, something I can no longer do. The risk of tipping over is just too great. But in the commode chair, that risk is dramatically reduced. Not only can I move to where the water from the shower head has the best reach, but I can also use the hand wand to better effect on my nether regions.

The use of the commode chair was sufficiently positive that I don't see myself going back to my old method. I have eliminated four transfers from my toilet routine, so I am not so exhausted by the end of it all. I have more time, since I am not using the time to transfer, more time to enjoy my shower. I can still do all my other routine stuff, without any real changes to how and where.

The only real downside is the loss of the bidet seat. While the need for this cleanse is not desperate on shower days, on those days without the shower, I am going to have to find a way to clean myself. Given that I sit on my rear end all day, having a clean bum is really important to me. I am sure I can figure something out. Of all of the possible issues in my life, wiping my own ass is still an important goal post for me.

Sunday, 17 July 2016

It's 50% Physical And 100% Mental

I grow increasingly tired and weak these days. My left shoulder is next to useless, although in the oddest of progressions, my lower left arm is just fine, and my upper left arm, while weakening, can still compensate for the loss of strength in my shoulder. But then there is my left hand. That thumb injury continues to plague me, painful and persistent. There is little I can do about it, so basically it means my left side is slow and difficult.

My right shoulder is still better than my right, but it too is showing signs of weakening. The biggest thing is the pain. Almost every time I do something the muscles in my shoulders and upper arms feel like they have been "pulled", overworked. There is no time, absolutely no time, when something isn't hurting me.

Oddly enough, I don't think it will be the physical stuff which drives me over the edge. I think it is the relentless feeling of loss, and of failure. The continual sense that I am less and less each day, my dependence on others increasing constantly, my abilities diminishing even as I watch them. This disease is as much mental as it is physical. In fact, the mental part is probably even more impactful than the physical part.

Let's face it, having someone do all your housekeeping and cleaning is certainly not a curse. Getting to sleep whenever I want for as long as I want is certainly not a challenge. The fact that someone helps me with showers or other bodily functions is just an inconvenience, something you get used to very quickly.

But you never get used to the feelings.

Saturday, 16 July 2016

Filling The Void

I find myself vacant today, empty of wisdom or wit. I simply have nothing I want to say.

It's not that nothing has happened in the last 24 hours. It's just that it all seems so repetitious, so mundane. Sometimes living with ALS is pretty much no different than living without it, if you take away the perpetual weakness, the wheelchair, and the distress. And some days those elements become so common, so regular, that they too take on the mask of mundanity.

Ordinary is ordinary is ordinary is ordinary. The rain falls, splattering on the streets, the car tires squishing it sideways, making tracks of water which drys quickly, leaving the streets once again a sombre surface. There are clouds above, the same as yesterday, likely to be the same tomorrow. The noises of life outside my window continue unabated.

I'm not bored. although I am, as always, tired. I have no energy, no enthusiasm for much of anything. I don't want to put out the effort to get into my truck. I don't want to bother with the transfers in and out, should I go somewhere. I don't want to get into my power chair; being outside in the rain is not as much fun as it used to be.

Like an old dog, laying on the porch of the rattling old shack beside some dusty rural pathway, I am too much gone to do too much at all. That's the day today. Void, empty, motionless.

Friday, 15 July 2016

Bravery Unto Death

Generalizations are dangerous, especially this one. When I was diagnosed with ALS, one of the generalizations I heard was that when you get it younger, it goes slower. I know this is true in some cases, but it is certainly not true in others, especially for those with Familial ALS. I also know that my ALS has not been all that fast. Perhaps the only real predictor of progression is where it starts. If it starts in your throat, it goes fast.

I saw a post in one of the ALS forums right now about someone losing a father to ALS, and how it was progressing. It made me think of my own progression, they way it has been more aggressive of late. As the person railed against the losses, the difficulties, and the guilt, I could easily identify with her. Her father was younger than me, diagnosed at a younger age, living with ALS longer. It seemed to be moving along slowly, until the disease went after his bulbar regions. Now the PALS is struggling to breathe, facing a life ending decision.

Last night I was thinking about this too. These days when I think of ending my life, it's more about how, than when. The "if" of it all doesn't even enter the picture anymore. Like that man in the forum post, I've had a slow progression, but it's been speeding up lately. I know it is going to go after my throat and neck eventually; it's already started there, slowly but steadily.

As I thought about this last night, one thought stood out in my thinking. It was about having some scotch to get up the courage to end it all. I didn't want to last night, that's for sure. But I thought about the impact of alcohol on my thought process. I am not going to take my life because alcohol will make me depressed. I will take my life because alcohol will take away the fear, the inhibitions around it. It's a form of self-medication.

Alcohol has long played a part in raising the bravery component. It's not called liquid courage for nothing. But I don't think it makes you braver; it just reduces your fears of what might happen. I know what will happen, or at least I think I do. I will have a few glasses of scotch, take a few extra sleeping pills, and call it a day. Just not today.

I want to live, for as long as I can. And when the time comes, I want to die gracefully, with some degree of dignity, not in a drunken stupor. I want to be aware of what is happening, of why I am doing what I am doing, of those around me. I want to be thinking, acting instead of reacting. Like the man in the forum post, there are thing which will force my hand, things which will make my decision. I just hope I am brave enough when the times comes.

Thursday, 14 July 2016

Katherine The Commode Chair Engineer

Who would have thought that Katherine could be such a great commode chair engineer? I mean, I know she knows her home care stuff. After all, it was her profession. On the other hand, after all of my troubles yesterday, she took one look at what was going on with the chair and came up with a couple of viable solutions.

First of all, we are going to have to lower the chair back down to its lowest seating position. This will mean that I am forced to find a solution to make my Toto Washlet E200 toilet seat bidet function work, even with the toilet seat up. Somewhere in there is a seat lift sensor, and I am certain that, between my brother Jim and myself, we can find a way to turn it off. That way the commode seat truly becomes the toilet seat, leaving me still able to clean myself up afterwards.

She also made pretty short work of my feeling that I was going to tip forward in the chair. She simply loosened all the seat webbing, allowing me to slouch well back. That way my centre of gravity was suddenly well over my rear end, and even back of it a little. Now going up that slope into the bathroom was easy, no longer frightening. Furthermore the adjustment in my centre of gravity means I can take a bit of a run at the lip in the doorway, eliminating it as a blockade, just as I do in my regular wheelchair.

Not all the problems are gone. There are still issues with reaching in to clean myself, and positioning of the chair so that I don't pee all over the floor. The first problem is mostly solvable by placement of my rear end on the chair. The second problem may involve acquisition of some sort of pee shielding device.

There is one last thing. I was showing Katherine how the chair moved when I went to take off my underwear. She simply reached down and locked the front wheel, and voila! I saw how difficult it was for her to set that lock, and said "What am I going to do when I'm not strong enough to do that, when I am home alone." She got a sad look in her eye and said "When you can't do this, you won't be strong enough to do anything. You can't be home alone."

When Katherine made that statement, my inner voice screamed. She knew it; I could tell by the way she was looking at me. She said it again. My inner voice screamed again, only not quite as loudly this time. Then she said "That's the fact. There is nothing you can do." I changed subjects. I left the room. I went to my bed to dress, while she went to make me some breakfast. Then, by the time I had had something to eat, a bit of coffee, and some help from her, I realized she was right. I've started that adjustment now, even though I am okay for today. It's just another thing, another thing in the future.

Wednesday, 13 July 2016

Commode Chair Failure

Well, my new commode chair was a disaster today; not quite an unmitigated disaster, but a disaster nonetheless. It was supposed to make things easier for me, supposed to reduce the number of transfers I had to make. I did none of that; it just made things more difficult.

Yesterday, Alan from the ALS Society came over and adjusted the commode chair so it would fit over the toilet. It did. We checked, sort of. We didn't actually run through a test utilization of the chair, one that would have required me to get undressed and actually use the toilet. Instead we did a positioning check, and eyeball look at things. It fit, so the real test was to be this morning.

It all started out looking good. The transfer from my bed to the commode chair went fairly well, until I got halfway and my right leg, the first one in the transfer, slid into the butt hole in the middle of the chair. I kind of got stuck trying to move it out, but Michael was there to help. Lesson learned. I have to be careful in the transfer.

Then came the roll into the bathroom. Before I go too much further, it's important to know that the wheels on the commode chair are solid plastic, not flexible rubber. So they don't flex and flow with the bumps on the floor. Also, the chair is set higher so as to go over the elevated handicapped toilet that I have in my bathroom. This means I don't get a good grip on the wheels, and they tend to slip very easily. Then there is the slope, a very slight slope, up into my bathroom.

I can make the slope in my regular wheelchair and PWC with no difficulty at all. However the raised seat on the commode chair also raises my centre of gravity, so when I hit the slope at the door, I started to feel like I was tipping over backwards almost immediately. Then, as the front casters on the wheelchair hit the top lip of the slope, they failed to rise to the challenge. The chair stopped.

There I was, leaning over backwards with a high centre of gravity, stopped by a door lip I'd never even noticed before. I tried edging forward. This is when I discovered that the hard, plastic tires on the commode chair have absolutely no grip on my laminate floor. They simply spun when I tried to roll forwards.

At this point I called Michael, my Home Care Aide, to help me get into the bathroom. He tried pushing forward but the lip still held back, and I felt like his pushing would tip me forward, out of the chair. So we changed tack; he pulled me into the bathroom instead. I thought I should try this myself, so I went out and came at it in reverse. Sure enough I could get there, but it was very difficult, and risky.

Once in the bathroom I found that I could, sure enough, get the chair over the toilet. However I also found that the non-stick tires of the commode chair moved with every movement I made. This made getting my underwear off a challenge, and made positioning a multi-stage event. It finally all came together, and I relaxed and began what needed to be done.

This is when I discovered that the position of the commode chair accommodated rear action, but not front action. As I sat there, restfully enjoying the release of my bladder, I heard a splatter. I looked down to see a stream of urine going through the commode chair, bouncing off of the front of the toilet seat, and making a large, yellow puddle on my bathroom floor. Unfortunately at this point there was little I could do. I grabbed for my jug, and dropped it in the excitement. The puddle got bigger. I gave up, tossed down some readily available paper towels, and called Micheal for help.

Michael cleaned up the mess. Then I tried to complete the task at hand. Unfortunately by this time my colon was sufficiently frightened that it closed up tighter than a Mennonite's wallet. There would be no poo today. That's when I realized that if I could not use the commode chair for the toilet, there was really no use in trying it for the shower. Using a regular chair for the toilet, with the required transfer, then using the commode chair for the shower, with another two required transfers, simply increased the work of my morning instead of lessening it.

I rolled back into the bedroom, transferred to the bed, then transferred back onto my regular chair. I was beat. Nonetheless the bathroom called to me, so off I went. I tried to transfer from my regular chair to the toilet. Only this time I was bare-assed naked. I had no cloth between me and the toilet seat to ease the slide. Instead my bare skin grabbed onto the toilet seat, the surface tension clamping like it was a magnet, a very powerful electro-magnet.

Instead of me sliding onto the toilet seat, the toilet seat almost immediately popped its couplings and rotated in the direction of my slide. I ended up at about 30 degrees off centre, the seat beneath my rear, but the hole to the bowl of the toilet well south of the intended target. Try as I might, I was unable to reasonably re-position while seated on board. So back into my wheelchair, my colon still refusing to release, only this time I was grateful. Instead I went directly into my shower, after which I got dressed and did exercises with my HCA.

Here I am now, sitting at the table, wondering when my cowering colon will recover sufficiently to allow me to do what I know I will need to do. I am also wondering if things will happen slowly, giving me time to do my part, or if there will be a repeat of Friday's debacle. Either way, something's gotta give. Ah the joys and excitement of my deteriorating life with ALS.

Tuesday, 12 July 2016

Bad Night

I'm tired. I'm exhausted, weary, beat, drained, bushed, bag, worn out. And all of this is after sleeping for the night, or rather, not sleeping for much of the night. Last night I went to bed at 11:00 PM, read for about 45 minutes, then went off to sleep. I awoke at 3:00 AM to pee, and then, for the life of me, I could not get back to sleep. It was well past 5:00 AM before sleep returned to me.

Even after slumber once again settled into my realm, I was up every hour thereafter, either to pee or to rotate my body, or just because, for no good reason. Six, seven, eight, nine, ten, eleven. By noon I was still in bed, still trying to get a decent sleep. At 1:30 PM I finally came to the conclusion that this was as good as it was going to get. Staying in bed would bring me no further rest. The only benefit to be derived from remaining prone would be to not use any additional energy, to preserve whatever benefit I could derive from my losing battle with solemnence last night.

I hate days like this, or nights like that. They happen on an irregular basis. I don't sleep well; I don't get much rest. I wake up more tired than when I went to sleep. The next day, the morning after, is like I hadn't slept at all. I won't be rolling about in a fog all day, but I will be constantly on the edge of needing a nap. In fact Katherine has already proposed that idea, taking a nap.

Unfortunately the reason I got out of bed, other than wanting to use the toilet, is that I am expecting Alan from the ALS Society here at 4:00 PM to adjust my commode chair. Plus I have promised to make Katherine's favourite dinner tonight. I know Katherine would forgive me for bailing on dinner, but Alan from the ALS Society is heading off on vacation tomorrow, away for a few weeks, so if I don't get the commode chair fixed today, it won't happen for nearly a month. And I need that chair.

So I'm up. Whoopee. I think I will go to bed early tonight. And try to sleep, or not.

Monday, 11 July 2016

Always Losing Something

It's creeping incrementalism, the slow and steady loss. That's what is getting to me most these days. Some PALS refer to ALS as "Always Losing Something". They're right. That's exactly what it is. A while ago one of the people in my trivia group noted that getting into the truck seemed a lot more difficult now than it did last year. He seemed quite shocked about it. Of course he hadn't seen me make that transfer in a year, so he had the time differential to notice the change. But it doesn't all happen in one day. It creeps.

The transfer to my bed is another good example. This morning my Home Care Aide was helping me with that transfer, keeping me from sliding back down the transfer board as I made the move off of my wheelchair. It was the first time I felt like I really needed that help. This is not a sudden development. There is a whole, sad story of loss that gets me to this point.

Three years ago, even though I had recently gone into a wheelchair, I could push myself vertical and my legs would still bear the weight. So to get into my bed, all I did was the forced vertical and a quick rotation into a sitting position. As time went by, I lost the ability to do the forced vertical, so I started doing a simple pivot transfer, lifting myself out of my wheelchair, twisting my body sideways, and sitting on the bed. Time passes. Eventually I found I could no longer lift myself in one go, so I split the difference and sat on the wheel of my wheelchair at the halfway point.

More time passed. I found that a stop in the middle was not enough. I had to stop once more, with one cheek on the bed and the other on the wheel. Even that discomfort was soon lost to me. I had to start using the transfer board.

The first time I used the transfer board to get my my wheelchair to my bed, all I did was slide up sideways. It was one clean movement. Time passed again. One day I found it took me two pushes to get up the transfer board, then one day it took three pushes. Now I am up to four and even five pushes to make the complete trip from wheelchair to bed. Plus I tend to slide backwards these days, thanks the the very slight slope on the board.

Soon no amount of pushes will get me across that board. I will simply not be strong enough. It won't happen all at once; it will happen a little bit at a time. When I reach that tipping point, I will start using my transfer sling full time. It will be another change. Some will see it as dramatic; it isn't. It's a slow, steady, losing process. Always Losing Something.

Sunday, 10 July 2016

Can I Complain, Please?

I awoke this morning feeling almost normal, or as normal as one can feel with ALS. My lower regions seemed to be settling down; no emanations, no cramps. I did the toughest thing I have to do each day. I got out of bed and went to the bathroom. While seated there, I thought to myself how good it is to feel better. And I asked myself, "What do I have to complain about?" After all, I was eating, drinking, breathing, passing waste; I'd met all the requirements for living. That's good. Right?

No, I really don't have all that much to complain about; unless you count being terminally ill with an incurable disease, trapped in a wheelchair, unable to move my legs, increasingly becoming weaker in my arms. I guess I could complain about purple, swollen feet and the bleeders that sprout on me on a regular basis. Then again, that's not really something to complain about. It's just life, and the way it works for me now with ALS.

Of course there is the money side of things, something I feel I can complain about often. After all, I'm living on $1,600 a month, and my mortgage, condo fees, taxes and insurance come to about $1,400 a month. Then again, I have a roof over my head and, by virtue of going in arrears on my condo fees, I have enough for groceries, most times. With the help of Katherine and others, I make ends meet. It's just life, and the way it works for me now with ALS.

Now I really could complain about the limitations of life with ALS, about how I can't reach dishes past the first shelf, about how I need help to pick up even the least article off of the floor, about how my tailbone hurts from sitting on it all day, about how its becoming increasingly difficult for me to get in my truck and drive. But why? It's just life, and the way it works for me now with ALS.

So what can I complain about? I have a full wine rack, a full food cupboard, a full fridge, and a full freezer. I have a roof over my head, at least for now. While it's getting harder, I still can drive in my truck, still can get about in my power wheelchair, still can eat an ice cream and drink a beer. And it really doesn't do me a lot of good to complain. It's just life, and the way it works for me now with ALS.

I guess I really am just stuck with it, life with ALS. I could complain, but it won't do any good. Nothing will change if I complain, nothing will get different. Life with ALS will continue to be life for me. But sometimes, I really, really, really, really, feel like I might have something to complain about. And I want to complain. It's just life, and the way it works for me now with ALS.

Saturday, 9 July 2016

Imodium In Bulk.

Let me start by saying I am feeling better. Not ALS better. No my current complaint is much more mundane, much more ordinary. For the last few days I have been having tummy trouble, and by tummy trouble I really mean diarrhea. I've had an ass like a shotgun and the primary ammunition has been nearly liquid ejecta. It ain't pretty, and it rhymes with that too.

Yesterday was the worst. Before home care arrived, I called and cancelled. I was afraid of any movement, especially any movement of the exercise kind. Remember, when your body moves, so does your bowel. Instead I stayed in bed, hoping beyond hope that things would get better, that this feeling would go away.

I finally did get up. I tried to get dressed but halfway through my stomach began its performance. It was all "Double, double toil and trouble; Fire burn, and caldron bubble." My rumblings abdominal were truly phenomenal, the base emanations sufficient to disturb furniture nearby. I prayed. Although I wonder about god as our architect. His design seems insufficient, having left me in this position. If I am made in his image, he must have spent a good deal of time on the toilet. Surely, he could have done a better job.

The transfer to my wheelchair was uneventful. Hallelujah! I made it to the kitchen, made some coffee, and ate a small piece of fish I made last night. It sat, mostly, for a while. Then it happened. Unfortunately it started to happen while I was in the kitchen. By the time I made it to the bathroom, the contents of my lower bowel had begun to make their announced arrival. By the time I transferred to the toilet, I realized my underwear would be lost to the process. By the time I got them off, my life was shitty mess.

I finished what I had started, or rather what my stomach had started. At that point I cleaned up what I could, then slid through the greasy remnants and onto the towel which I used to cover my wheelchair seat. I rolled to the shower and transferred once again. This time there was less goo, but I still needed the equivalent of a fire hose cleaning. So shower I did, as I surveyed the damage to the toilet, to my now disposed of underwear, to the towel, to me.

After the lengthy process of cleaning up, I returned to the kitchen. This time I did not bother with clothing, except for a shirt. If this were to happen again, I wanted to minimize the damage. Katherine arrived, reminding me that I had some Imodium. I am reminded once again of how crappy a job I do of looking after myself without her around. She rustled up the Imodium, then hustled me off to my bed so that I could dress myself.

Now for most people, the distress of diarrhea is troublesome and tiring. For me it is exhausting, thanks to the general weakness of ALS. Add to that the energy required for multiple transfers, for showering off the shit, for changing clothes, and finally for attempting to dress once again. I got underwear on. I got compression socks on. I got my shirt on. But as I was pulling my shirt on I fell backwards. At that point I said "to hell with this." In that very same moment, Katherine walked in, looked at me and said "go to sleep". I did. It was 5:30 PM.

I awoke this morning at 11:00 AM. The Imodium has done its work. My tummy is still sore, but my bowels are no longer explosive. I have taken the risk, not only of dressing but of putting on my blue jeans. Katherine is doing the laundry, recuperating the damages of yesterday. We are washing it twice. I've had some coffee with what appears to be little ill effect. I think I may be through the worst of it.

I've been thinking about what might have caused this little incident. I come up with two very clear possibilities. It might just be a bug, some sort of stomach virus that I've had for several days now. Or, a much worse possibility, I may be developing a reaction to red wine. It's the only difference for Katherine and me over the last few days; I've had a lot more wine than her. If this is situation, I'm going to have to start buying Imodium in bulk, at Costco.

Friday, 8 July 2016

Five Dead In Dallas

I'm trying to wrap my mind around the events in Dallas, TX last night, the planned and orchestrated shooting of 5 police officers during a Black Lives Matter protest. No matter how I look at it, this tragedy will offer no good. I do not believe it will be a turning point, nor do I believe it will shock the USA into any sort of logical sense. It is just another in a long string of terrible shootings that have become a normal part of life in this once safe and proud nation.

I look at things like education in the USA, where children are being taught that science is bad and the only source of truth is the Bible. I look at the lack of knowledge around history, even their own history, which is so prevalent there. I watch as this once great nation destroys itself on a headlong march to theocracy and, dare I say it, fascism. I have to ask myself, where did this love of ignorance start, and when did it start?

Do children in American schools learn about the "Know Nothing Party", a political movement from the 1850's decrying immigration and the impact of German and Irish Catholics on American society? Do they learn that the people in this party were "nativist", wanting voting rights only for native born Americans, by which they meant Protestant white men?

Do students in America learn about the impact of money on the use of power? Do their history classes teach about the dangers of wealth concentration and the potential for violence, the kind of violence we see in America today?

When teachers teach that the Bible is an accurate description of how life came to be on this planet, when religionists build replica's of the fabled ark of Noah, when leaders use churches and synagogues and mosques and temples as tools for election, when people are armed to the teeth and given a boogyman as a target; when these things happen, social structures slowly and inexorably fail.

Dallas is not new. Orlando is not new. Sandy Hook is not new. Watts is not new. Detroit is not new. America, once a land of opportunity, has become a land of danger where it takes less information to buy a gun that it does to buy cigarettes, where shooting is common and where the Wild West is considered normal, even glorified.

Where will it lead? I don't know. Seeing it from the safety of Canada gives me some protection, but when your neighbours house is burning down, you'd better get a hose ready for your own. Flames spread, even when there is no need. And we, we Canadians, don't get to point a finger and "tut tut". We have our own problems, albeit not as dramatic as those below our border. We must keep our own house in order, before we tell our neighbour what to do.

But it is leading somewhere, somewhere frightening.

Thursday, 7 July 2016

Barbaric Medical Practices

In Star Trek, The Original Series, the pilot episode, not seen until many years after TOS was done, was called "The Cage". It was basically about aliens who could control minds, making people see and feel what the aliens want them to see and feel. This episode actually became a two part show in the very first season. It was called "The Managerie".

In that two part episode, the original captain of the Enterprise, Captain Pike, has been seriously deformed and burned in an accident. He is trapped in a fancy looking wheelchair with a red and green light. Red for no, green for yes. That's it. The Star Trek crew, now lead by Captain Kirk, take Captain Pike to Talos, where the Talosians affect Pike's mind so he looks and feels strong and healthy once again, to both the crew of the Enterprise, and to himself. But Pike has to stay in his cage, in the managerie.

A few years later, in 1986 to be exact, the movie, Star Trek IV; The Voyage Home came out. In that movie, Chekov is hurt and has a possible epidural hematoma, a bleeder in his brain. The 20th century doctors want to drain it using trepanation. Dr. McCoy sneeringly describes their attempts to save Chekov as "barbaric", and uses his tricorder to resolve the problem. In the same episode he gives a woman a pill to help her grow a new kidney, eliminating the need for dialysis or a transplant.

There are a few really interesting things about the maturing view of technology from 1966 to 1986. It's interesting that all they could come up with in 1966 for Captain Pike was a fancy wheelchair. It was up to the aliens to come up with some sort of resolution, and even that wasn't a physical change, but an illusion, the maintenance of which required that the good Captain stay in what was essentially a cage where he could keep his healthy image of himself.

Then, 20 years later, the ideas of non-invasive solutions to both a kidney problem and a brain injury were the standard, if not in the present at least in 2286, the home setting for the crew of the Enterprise. In those years, medicine matured sufficiently in present times for people to postulate something truly different 200 years in the future, and the audience was able to see it not only as possible, but to see the humour contained within the sneer of Dr. McCoy. I remember the audience laughing as he snorted "barbaric".

We are barbaric, and remain barbaric, especially when it comes to ALS. A broken bone cannot be healed. All we can do is set it, cast it, and wait for nature. A kidney cannot be healed. All we can do is replace a bad one with a healthy one from another person. There has been progress in the last 200 years, for sure, with most medicine. There has been almost no progress with ALS. We are in the same place as we were 200 years ago, except we understand the process a little better.

Doctors don't heal much of anything. They look at x-rays, they poke where it hurts, they make educated guesses. Then they try to create a situation where the body can heal itself. All they really are is highly paid technicians with a modestly workable understanding of most serious illnesses. They are barely beginning to understand neurological processes. I expect we will have to wait for a long time yet until something comes of that understanding. Most certainly with ALS. I hope it's not 200 years.

Wednesday, 6 July 2016

Ah, What The Hell

Ah, what the hell. You can write your own blog post today. I'll just provide an outline and you can fill in the blanks, find the words, craft the story as you will. How does that sound? Good? Well, here's the outline.

The first segment should be about having consistent pain in your left hand at the base of your thumb, very much like you had 35 years ago when you broke your scaphoid bone in your right hand. The pain started a few weeks ago when you slipped transferring from your power wheelchair to your manual wheelchair. So you decide to go to the local ER for x-rays and likely for a cast. Be sure to discuss your emotions around life with ALS, life in a wheelchair, and life with a cast on your left arm.

The next part is about how you spent almost 4 hours in the hospital, most of it waiting for porters to escort you from department to department. Don't forget the part where you had to go for x-rays twice because the doctor requested the wrong ones the first time.

Then comes the diagnosis, where a doctor who is younger than most of your children tells you the x-rays were "negative"; they can't see a break. And then he tells you that there could be many reasons for the pain, that you should take pain medications like Tylenol, and avoid using your left hand. A sarcastic comment about not using your left hand while in a wheelchair would fit quite nicely here.

There is yet another segment you need to tell, the one about how you went to the mall so Katherine could buy you an ice cream as a reward for being patient while being a patient. That's where, while waiting in your truck, you had to go pee. While doing so, you have an accident with the jug, and now your pants and the truck seat are wet.

Finally the last paragraph, where you go home and park. Be sure to tell the part about getting out of the truck, your face tortured with the discomfort of wet pants and a painful left hand. But there is a twist. The last sentence should be how you see Katherine out of the corner of your eye, smiling and waving a Peanut Buster Parfait for you to see. That's where you laugh and think, "Ah, what the hell..."

Tuesday, 5 July 2016

Little Things

Little things. The biggest part of the whole ALS challenge is the small stuff.

Yesterday was trivia night. I wanted to go, but ended up staying home because of the weather. The forecast called for thunderstorms with heavy rain and hail. Even as I looked out my window, I could see the rain. For most people this is not an issue. You park close to the pub. You run indoors. You dry off quickly. For me, there is no such thing as run, nor can I park close. I have to park down the block where I can get out of my truck safely. Then I have to make the arduous transfer to my wheelchair, followed by the not-so-trivial task of wheeling a half a block, all in the thundering rain.

Today I wanted to do a wine inventory. I find I can no longer lift the boxes of wine, no longer stack and re-stack them. It means they are all in a bit of a jumble, and I can't sort them out. I could call someone over to help; I've done this in the past. But I just want to know what wine I have and when it was made. Unfortunately I can't remember on either count. So I've asked Dion to go buy some wine racks for me so that I can rack the wine bottles one at a time, so that I can put dates on the rack to remind me of when it was made. It'll cost money for the racks, money I will have to come up with somewhere. It's just another thing, little or no.

I'm getting perpetually worn with all the small things, circumstances and happenstances which would mean nothing, and cost nothing, for most everyone else. Most people can handle a bit of rain, or an umbrella. Most people can move a box of wine, and remember when it was made. Most people can drink coffee without spilling it, most of the time. Most people can walk, stand, sit, move.

Perhaps it's more than the little things, but it's the little things that keep happening every day. It's wearing me down.

Monday, 4 July 2016

Six Months

I've been struggling with feeling sad lately. This is not depression, or at least not full blown depression. It's more like an ongoing feeling of sorrow. It is with me all the time, no matter what I am doing. Even when I am having fun, enjoying myself with Katherine or with others, doing something I love to do, this feeling drapes itself over me, making my heart heavy, weakening my spirit.

Yesterday we started a new batch of wine. This particular red wine is one which needs to mature for at least 6 months in the bottle before it will start to get really good. It's a French Cabernet Sauvignon which, when mature, will be soft and mellow, with a pleasant fruity flavour and very little punch in the back end. It will be wonderful to drink, easy on the palate, and good with just about everything.

As I thought about the timeline, I realized that this might just be the first batch of wine I make where I might possibly not get to drink it. I made it yesterday, June 3rd. We will bottle it sometime in late August, most likely on the 20th. This means the earliest consumption date should be about March 1, 2017. That's an awful long way away for me, possibly too long.

There is, of course, a solution to this, in fact a couple of solutions. I could drink the wine early. It will taste "fresh", carrying a bitter aftertaste. Or I could stop making the high quality wines I like, changing over to wine kits which only need to mature for a month or so. These kits lack the rich, full flavour that I like, but are certainly drinkable. Either choice is less than fulfilling, less that optimal, but they are choices nonetheless.

This is not the cause of my sadness. It is a reflection of it. Sadness like this makes me see the world differently, makes me think about timelines and losses. I am not sure which comes first, if I am sad because I think about these things, or if I think about these things because I am sad. Either way, it is burdensome, wearying. It tires me, at a time when I am tired from so much else. All I want is to make wine, to enjoy the fruits of my labours, and to forget about what might happen in six months. But there you go.

Sunday, 3 July 2016

Messy And Difficult

I woke up hungry today. Or perhaps if I didn't wake up that way, by the time I was finished my morning routine, I was certainly hungry. Not famished, but hungry enough to be willing to make my own brunch. Yes, it was well after noon by the time I was dressed and ready to cook, so I am loathe to claim it as breakfast, notwithstanding that I am breaking my fast.

So I decided I would make myself some breakfast, a real breakfast. Bacon, eggs, an orange broken into segments, some prosciutto and swiss cheese, and of course, a coffee. This is not a trivial task for me. My limitations with respect to the stove, moving about in the kitchen, and handling fine motor tasks make it a bit of a challenge. But I was up for the challenge.

Making breakfast was mostly uneventful, unless you count the small burn on the end of my thumb, the eggshells in the frying pan, and then those self-same eggshells on the floor, and the general level of mess. The burn on my thumb was a function of taking the frying pan from the stove to the sink in order to wipe it clean from grease after frying the bacon. In order to make a move like this, I need to brace one hand on the counter as I turn in my wheelchair from facing the stove to facing the sink. My hand slid down the frying pan handle, ending up with my thumb pressing against the pan itself. Nothing serious, just a little thing.

The eggs were a challenge on two fronts. First, cracking the eggs into the pan is difficult for me. I have to hold one hand on the stove front to make sure I don't fall over into the stove itself. I crack the eggs with the other hand. I've pretty much always cracked eggs one handed so this is not a big deal. On the other hand, my hands have weakened enough, just barely enough, that I have to push a bit harder to crack an egg. This inevitably over-cracks them, putting eggshells in the pan along with the egg. So I did my best to pick out the bits and pieces.

Then I turned to throw the eggshells into the garbage. The problem is that my fine motor skills have deteriorated, so I am a very bad shot these days. The only way I can hit the garbage can for sure is to have my hand, contents loaded, right over the top. I failed in this respect, missed the can, and ended up having the pick the shells up off the floor.

There are lots of little things like this which happen every day. Imaging every time you picked something up or put something down, you stood the chance of shaking, breaking, or missing altogether. I would love to have a day where I didn't spill something, knock something over, or drop something on the floor. But this is my life now, messier and more difficult.

Saturday, 2 July 2016

Wine Kits

I am headed over to the Wine Warehouse in about a half hour to pick up a couple of wine kits. Most likely I will purchase one high quality kit along with one medium quality kit. All in all I expect to spend about $210 on those two kits, perhaps a bit less. I can only do this because of the generousity of family, friends, and those friends who donate on my blog.

You might ask yourself, given how short I am of money these days, if this kind of expenditure is appropriate. First of all I have to say that without the help of others, this kind of expenditure would be impossible. Secondly, most of that help from others comes from those who either drink the wine with me, or know how much the process of making the wine means to me. While I do spend some small amount of my own money on supplies and such, I would not have the money without the wine, and I would not have the wine without the money.

The gross amount of $200 might seem a bit much, so let's look at what I get and how much it really costs me for a bottle of wine, notwithstanding that others are paying for it too. The two wine kits I buy today will produce, theoretically, 60 bottles of wine, but realistically, it's more like 55; that's just how it works. Now I usually give away at least 10% of the wine at bottling time to those who are helping me, so that leaves 50 for me. My wine cost per bottle is $4.00, and this is for good quality wine, as good and better than most wine you might buy in the store.

There is also the cost of the bottles; each wine bottle costs about $1.25, however I can use them multiple times. If we assume that I get 5 uses for each bottle, a very conservative estimate, then I spend $0.25 per bottle of wine. On top of that there are corks and labels, which cost about $15.00 per kit, or about $0.50 per bottle of wine. So far we are up to $4.75 for a bottle of wine.

Finally there is the wine making equipment itself, about $400 worth of it, including the gear on loan from Brad. We refer to him as storing his wine making stuff at my apartment, but really it's here because I can't afford to buy the filter machine or the corker. Now I made literally thousands of bottles of wine with this gear, so at best I can estimate that I might have an associated cost of $0.25 per bottle in equipment costs. We've made it to $5.00 a bottle, a generous cost estimate.

Now lets look at what I get for this expenditure. First of all, it's not the wine that is most important. Where I really gain the most pleasure is in the social aspect of making the wine, the fact that it draws people together, bringing joy into my life. I love to have people over to help make it, to help rack it, to help bottle it, and yes, to help drink it. The wine is gone in a moment, but the joy lasts forever. Making a $5.00 bottle of wine brings me a priceless amount of happiness. Drinking it ain't bad either.

So if you want to make my life better, buy me a wine kit. You are really purchasing happiness and memories for me. That's the best gift of all.

Friday, 1 July 2016

Living On Camera

"Look, Ma! No hands!" Or rather, "Look, Ma. I'm on TV." The video camera is tracking me today, following my every move, recording how I live, how I get about, how I get dressed, make coffee, even how I write this blog. It's an odd feeling, knowing I am on camera, yet doing nothing different. I'm not acting; this is real life.

The rest of the day will be easy for me. It's Canada Day. All the stores are closed, so I'm not going shopping. The wine is all bottled, except for Katie's Peach Chardonnay. Maybe I'll bottle that today. It will keep me busy, keep me from sitting on the couch, doing nothing all day. In fact that is my challenge of late. I have too many days where I have neither the energy nor the desire to do anything at all. Sitting on my couch, drinking wine and watching TV seems like a good option.

It's not though. Pointlessness in my life is deadly. Even something as seemingly pointless as sitting on my balcony, drinking a coffee and watching the world go by can bring meaning to me. Seeing activity, seeing life in motion. In a way, that's what the camera is doing too. It's bringing meaning to my life, showing it in action, showing me in motion.

This is something I really want to do; I want to share my story in all its ugliness and difficulty. I want people to know what it's like to have ALS, not just in those late pathetic stages where I will look all crippled and hunched over, or laying in bed completely unable to move, locked into my body. I want people to see that this disease is progressive, that it took me from walking to a wheelchair, and is now taking me from having strong arms and shoulders to weakness throughout my upper body. I want people to see that ALS isn't just the end, that the slow dying starts right from the beginning and keeps on going, right to the end.

I am going to die; it may be from ALS or something else entirely. I may die soon, or I may live for another couple of years. It really doesn't matter. What matters is living. That's the ALS story I want to tell.