I Have A Baby-Sitter Now

Home care came this morning. It was Michael, one of my regular Home Care Aides. He was not here to help me with my shower, nor to put on various creams and powders in places I can no longer easily reach. He was not here to do my exercises, to help me maintain flexibility in the dead and dying muscles of my body. He was here, essentially, to baby sit me; to ensure I was up and dressed and to make me some breakfast.

The truth is that I probably need a bit of baby-sitting while Katherine is out of town. If I have no reason to get up in the mornings, I will often stay in bed until well past noon, dozing on and off. Once I do get up, there is the effort of going to the bathroom, followed by the even greater effort of getting dressed. After all that I usually look at my bed and think about returning to sleep. The other failing for me in solo mornings is eating; by the time I am up and dressed I am far too exhausted to bother with making breakfast. I usually just have a coffee and, if I have the energy, perhaps something cheese from the fridge.

I am not lazy. It's not that I don't want to get up, go to the bathroom, get dressed, start my day. It's not that I don't want to make a simple meal for myself. It's that I am exhausted by the time I get to it. ON days when I don't have exercises, Katherine is usually here, making breakfast for me. On days when I have exercises, I rarely have a proper breakfast. Often I don't eat until Katherine shows up, often not before dinner. I'm just to worn out to bother.

So while she is away for another 22 days, I will have exercises on Monday, Wednesday, and Friday. On Tuesdays and Thursdays, I will have a light breakfast. And on weekends I will sleep in, resting until it's far to late in the day to contemplate anything other than perhaps making dinner. Or maybe I'll have company, as I do this weekend. Or maybe a party, as I did last Saturday. You see, I can keep myself busy once I am up and about. It's the mornings that sap my energy. So perhaps I do need a baby-sitter a couple of times a week.

Donation Fatigue

Donation fatigue. It's what we all feel with the bombardment of advertising, telephone calls, personal appeals; all designed to make us feel like this is a cause we should support, all of them working on our emotions, tugging at our heartstrings, pulling at our wallets, all saying "give now". I suffer from it. You suffer from it. The needs are all around us, and constantly clawing for our attention.

So here I am, adding to that cacophony, that cloud of sound and interruption, asking for a donation to Betty's Run again this year. Some of you have already done so, and for that I thank you. Some have other causes which they feel they must support first, and I understand that. There are a lot of charitable choices out there, and mine is just another one.

Or is it? I am not going to make the case about how ALS needs your money more than cancer. Nor will I attempt to pluck away at your soul by telling you that at least there is a cure for heart disease, or a treatment in many cases. I won't play the game of how my disease is worse that anyone else's. The only true differentiator between anything else and donating to Betty's Run is me. I have ALS. I am going to Betty's Run. I am asking for your support.

This is perhaps the only distinction. ALS is not an incurable disease; it's an underfunded disease. We are getting closer to a cure, slowly but surely. When we arrive at that day, I suspect we will find that a great many other neurological diseases are cured as well. It just takes time, and money. Lots of money. Lots of time. And I don't have much time left.

So please; if you can find it in your heart to support this cause, I would greatly appreciate it. If you have already, I offer you all I can, my sincere thanks. And if you simply cannot, if donation fatigue has gotten to you, if other causes take priority, I understand. We all struggle with the challenge. Even me.

I'm Going Out

I need to get out of here. I've spent my whole day so far just laying about doing nothing. I didn't even make it into a sitting position until well after 1:00 PM. There is no Katherine here to encourage me. There is no reason for me to be up at a particular time, nor any reason to go to bed at a particular time. But sitting around all day is not good for me.

The biggest distance I have gone, the biggest movement of the day, has been to the bathroom. That, of course , takes energy on my part, so it is not to say that I have not exerted myself. I've even managed to make it into the kitchen and make a cup of coffee for myself. But I am, basically, moribund, laying in terminal decline, totally lacking in vigour.

So in a few minutes I am going to make the rather arduous transfer to my power wheelchair. I am going to head out for a 30 roll across to an area nearby known as Brentwood. I will reward myself by purchasing a bottle of my favourite Scotch, from which I may or may not imbibe this evening. It matters little. Then I will make the return trip, down sidestreets, through parks, passing pleasantly kept homes and gardens along the way.

I will breath in the air, fresh from a passing rainstorm. If the rain returns, I will get wet. If the sun is hot, I will be wearing a cap. If the wind blows, I will have my hoodie. I will, most importantly of all, be outside, free from the encapsulating four walls of my small apartment, free to feel the open sky above me and the solid ground below me, free to roam at will, at least until the battery in my wheelchair compels me to return home.

There are limitations in every life, boundaries of ability and time, which compel us down certain paths, empower certain decisions. It is not only me who needs to get outdoors. It is not only me who needs to feel the wind, rain, and sun. It is not only me who needs to be free of four walls, even if only for a brief halcyon moment which I will store in my memory. We all need these things, these moments of escape, liberation from the limitations we imagine are there. I'm going to go out, not for anything in particular, but just to remind myself that I can.

Suicide

Since doing the interview on Physician Assisted Suicide recently, I've had a few people ask me about the specifics of my plan. I've been asked this in the past as well, but generally I give a fairly vague response in order to minimize reactions. In one case a medical professional asked me what I planned to do, and I told her in some detail. She responded by saying it was all she could do to stop herself from grabbing my "supplies" and making off with them. Unfortunately for her, those supplies are legally mine, medically prescribed, and hidden. Fortunately for me she was a true professional, admitting to her feelings but not acting on them.

Before I go much further with this, let me make this perfectly clear.

I.DON'T.WANT.TO.DIE.

I am no different that virtually every other healthy person on this planet. I want to live. I want to see my children all married with children of their own. I want to see my grandchildren grow up and go to college, get married, and perhaps even have their own children. I want to live a long and happy life.

Unfortunately it's looking more and more like I will not get what I want, so I have to be happy with what I have gotten so far. I will confess that the idea of ending it all is in my mind on a regular basis. I wake up a great many mornings asking myself why I keep going. Then Katherine comes into my room and says "get up", and I cannot help but smile at her. Or I remember that my daughter, Kate, is coming for dinner in a couple of days, and surely I can wait that long. While my quality of life is tumbling, my reasons for living are still strong enough to outweigh it. That will change one day, but not this day.

As for taking my own life, this is a fairly easy thing. Information abounds on the Internet with lots of ideas for quiet, painless departure. The key ingredient, it seems to me, is courage. You have to be willing to leave and have the courage to do something about it, something I am not willing to do yet. My specific plan involves about 8 Zopiclones and a half bottle, or perhaps a full bottle, of my favourite Scotch. Online research tells me that should do the job just nicely. I will fall asleep, and I am extremely unlikely to wake up.

Of course, that's why I am in favour of Physician Assisted Suicide. I might be wrong. It's unlikely, but something might go wrong in the process. More importantly, the above plan involves having the full use of my arms and a full ability to swallow. If I wait too long, that will be lost to me and this plan will fail. So doing it myself means I have to leave early, something I clearly do not want to do. As I have said before, it's a timing issue, and a near run thing. It will be a whole lot easier if I don't have to do this myself.

Day 1 Without Katherine

Day 1 without Katherine. I took her to the airport this morning, early, where she boarded a plane to Vancouver. Then, after a three hour layover, she once again boarded a plane, this one headed for Hong Kong. As I write this, she is somewhere over the Pacific, hopefully with a glass of wine and a comfortable seat. She is tiny; almost every seat is a good seat for her.

I will miss her, no doubt. But it is an important thing for her to have this 25 day break, a chance for her to catch up with family, to explore old haunts and take a trip to new places. My only concerns are those of most who know about travel; lost luggage, cash on hand, trouble with customs, airport line ups. She is an experienced traveler, and old hand at international destinations. This should be no problem for her. She is going to have a great time with family and friends.

It will be more of a problem for me. Besides those desires which rest in pure selfishness, there are a great many ways in which she makes my life so much more livable. For the next 24 days, since day 1 is almost over, I will have to live without her. I will have to go shopping on my own. I will have to make meals on my own. I will have to sit at home at night and watch TV all on my own.

We have plans in place for me to have company. I have people coming over tomorrow. I will be busy on Monday. Kate will come over on Wednesday. But without Katherine, a lot of this stuff will seem empty. She really has be come an integral part of my life. On the other hand, I was alive before her, and I will be alive while she is away. I can manage my life.

On the plus side, for a week of her vacation I will be down in Vancouver. We have now made arrangements. Ricky, my son, is flying here for Betty's Run, then driving me down to the coast. I will stay with my Mom and Ray for four or five days. Then my friend Chris Gordon will drive me back. So really the 25 days is more like 18, and one of those is gone already. I'll be fine.

Interview With CTV, Again

I've just completed an interview with CTV News Calgary about Physician Assisted Dying. It's left me shaking and exhausted, not because of emotion, but because of the physical exertion of actually doing the interview. It's a lot more than just sitting there answering questions. They want shots of me moving about, transferring from my wheelchair to my couch, rolling in from my deck. All of this takes effort and energy. Then, on top of it all, I need to appear composed and intelligent while on camera.

It's another reminder of both how far I have come down this road, and how short the road is in front of me. Each activity feels like I am running a marathon, or at least a mile or two. By the time I make a transfer, I am in a full sweat. After working over the ramps to get in from the deck, my arms are shaking from the effort. And even as I talk, my voice becomes weaker the longer the sentence. Maybe that's a good thing; I am forced to speak in sound bites.

Doing these kinds of interviews is much more than my natural tendency to seek media attention. Yes, I am a media whore. I love being on camera. I actually think I have something useful to say. But there is much more to it than that. What I am living through is drastic, a story in itself. Yet the other issues around it, things like Physician Assisted Dying, or access to social resources, are in themselves issues that reach far beyond living with ALS. There are things that need to be heard, stories which need to be told. I can tell them.

These interviews raise public awareness, not just of ALS but of the plight of so many people living on the margins of life, living with terrible illness, living in poverty. These interviews allow me to put what I think is a reasonably intelligent face, if not a pretty face, to the challenges of living with limited resources and with a limited life expectancy. These interviews allow me to share my story, as story shared again by so many others in our world. I am not unique; I am one of many.

I will keep doing media interviews as long as I can, and for as long as they will have me. At some point I will no longer be a part of any story. My story will no longer be relevant and the media will move on to the next shiny object. That's okay with me. I'll be done by then too.

Not Negative

I'm feeling good this morning. I am going to try very hard not to let any negative thoughts enter my head today.

Well, so much for that. It's funny how the second sentence destroyed the first. The minute I thought about not having negative thoughts, I had a negative thought. It's how the mind works. Try telling yourself not to think about a white elephant, or not to worry about where your kids are, or not to care about something. The mind eliminates the "not" in every case. We are hard wired to focus on the subject, and to ignore the modifiers.

This is how I think about the fellow who defrauded the good folks of Claresholm, Alberta. He arrived in town, healthy looking and fit, and declared that he was an evacuee from the fires in Fort McMurray. He had a sad story, where he and his wife, the woman with him, had fled the fires, seeing their house catch fire in the mirror as they drove away.

As with all small towns, Claresholm welcomed them, helped him, fed them, clothed them. Then the townsfolk began to notice that his behaviour did not line up with his story, that there were too many "modifiers". When offered a free meal at a local restaurant, he chose the most expensive steak on the menu. When offered a job, he turned it down, citing stress as his reason for not working. Yet he was certainly fit, active, able to move into the mobile home offered to him as a temporary place to live.

People focused on him, the subject, and not on all his "modifiers", all his excuses and stories. And when they figured out the truth, they called the cops. The fraudster, like all low level crooks, was not smart enough to get away before capture. He will do jail time, but probably not enough.

As far as I am concerned, he is the lowest form of criminal, or nearly the lowest. He takes advantage of people's generosity, the willingness help a stranger in need. Men and women like him abound after a disaster, seeking to prey on the good will of others. They have no shame, no sense of the harm they do. All they want is what they can get. After that, they don't care. They represent the worst of humanity, they take when others are so much in need.

Choosing To Stay

I have to be careful when I read what other people write or post, especially on social media. I tend to use it to shine a light on my own decisions and thinking, usually coming away feeling like I made a bad decision. Rarely do I come out well in this internal evaluation; I am far too critical of myself.

This morning my brother, Peter, posted about looking for work and whether or not he should move to Victoria or Kelowna, both places where there were opportunities. He also said that Calgary was out of the question. My niece, in a lengthy response, made a comment about being far from grandchildren. And then I thought about my own decision to stay here in Calgary. Maybe I made a mistake, especially when it comes to my grandchildren.

I can understand Peter's decision. He and his wife have children and grandchildren near them. To move to Calgary would put too great a distance between them. I liken it to the comment made by the Queen Mother during the Blitz of London. When asked why she didn't evacuate the princesses, she replied, "The children won't leave without me. I won't leave without the King. And the King is certainly not leaving."

We have these emotional entanglements which keep us in place, and often in a place. When I was diagnosed, I made my choice around medical care, financial support, social support, and even family support. My brother, Peter, was living here in Calgary at the time. Yet in making the decision to stay in Calgary, I lost my connection with my BC bound children and grandchildren. Kate has moved here, something for which I am truly grateful. But the others remain out on the coast, near to their Mom, to other family, to friends.

So I sat there, on my bed, looking out my window, thinking; once again second guessing my decision to stay. I'm not leaving now; I have too much here. Katherine is here. Kate is here. The financial and medical support I need is here. I have friends here. Torn between is enough to bring tears to my eyes, if I had enough strength to actually cry. Yet without the decision to stay, I would never have met Katherine.

Really, I am no different than Peter, or even the Queen Mother. I am tied to things here in Calgary, no matter what emotional bombs fall into my life. But that doesn't stop me from wondering. Did I make the right decision? I've made so many mistakes in my life. Is this just another one of those many? Yes, it was my choice, but it was not an easy one.

Constantly Grieving

In one of the online ALS groups I follow, a Caregiver for ALS, CALS for short, posted a note about his PALS having emotional difficulty. The PALS said he could feel ALS progressing in his body. The PALS was crying constantly for days on end, and had no joy in his life. I can understand these feelings; I take medications to keep these very feelings under control in myself. It's very easy to feel the progression in real terms. It's very hard to keep the grief at bay.

Human beings are not designed to be in a constant state of grief. It's supposed to be a short term thing, and emotional state that helps deal with tragic loss, a string of feelings felt both progressively and concurrently, all at the same time, that help us internalize dramatic change within our lives. We grieve at the death of a loved one, at the loss of a marriage, even at the loss of a job. We grieve, and then we move on.

Unfortunately PALS like me, and many others, never get to move on. As soon as one loss is internalized, we have another to grieve. As soon as one change is understood and accepted, another change comes along to put us through that whole process again. We are in a constant state of grief until the day we die. It is exhausting, defeating, wearing.

For some, it is just too much. The grief takes over their lives. It spills out in a never ending fount of tears and sorrow. Others, and I count myself fortunate to be in this group, use medication to make things easier. Still others, once again a group I am happy to be in, are the type who do not grieve over long, who move on quickly to the next thing in their lives.

This last part, moving on quickly from grief, is a survival mechanism, one which I think evolution has favoured. Image if we spent months and years grieving, as some do. We would not, could not, get on with our lives. We would forever be in grief stasis, stuck in an emotional wasteland. It may seem kind of shallow, to be happy about not grieving, but it keeps me reasonably sane. If it were not for my ability to rapidly accept change, and loss, I would be immobile in emotion as well as in body.

It's hard to be in grief full time. With ALS, it's what happens. Even though I handle it well and feel it lightly, it's still there, still bubbling in the background. Grief is a permanent part of my life. No matter what I do, no matter how I try, I just have to live with it. That's ALS in action.

The Cost Of Wine

It was going to be one of my lazy sleep-in days today, the kind of day where I would lay in bed until sometime in the mid-afternoon, where Katherine would bring me coffee and lunch, where I would do nothing but nap and rest for the whole of it. I knew that we were expecting company sometime in the afternoon; my thought was that they might arrive at around 3:00 or 4:00 PM.

Then my phone rang. It was 1:45 PM. Katherine announced to me that our company was going to be at my place at 2:00 PM, and I needed to get up and get dressed immediately. Now, doing anything "immediately" for me is an unlikely possibility. However I did dress as quickly as I could, skipping my normal bathroom routine, just a quick toothbrush and my medications. But I was ready when they called to get in, ready when the phone rang for the front door.

Cindy and Daniel are friends of Katherine's. They are a lovely, funny couple, about our age. He is an engineer with the local power company; she is an at home Mom, although the home is now empty of children. Katherine had mentioned that I make wine. Daniel and Cindy had said they tried it once but it turned out badly. One thing lead to another, and they started coming over a few weeks back to go through the process of making a couple of batches of wine, with appropriate guidance and supervision.

I hear this a lot, people making wine and it turning out badly. I asked Daniel about his first experience and he said "We didn't want to spend a lot for our first experiment." For me, making wine is no experiment. It's a precise bit of chemistry and natural magic. But their experience is something else I hear a lot, people buying cheap wine kits and not liking the wine. The other two killers in this process are not following the instructions precisely, and not being absolutely scrupulous about sterilizing things and keeping them clean.

As with so many things, you cannot get good wine from a cheap wine kit. Cheap kits give you cheap wine, expensive kits give you good wine. It's no major challenge. Yet it happens so often. People are afraid of the process, so they buy cheap in case it doesn't work. Then they wonder why the wine tastes so bad.

There are so many things in life that are like that, where we put in a minimum of effort and yet complain when we get a minimum of results. There are very few things in life where you get your best results when you put in your poorest effort. There are very few things you can purchase where a lower price does not mean lower quality.

I am not a fan of spending money on something without getting what I want, but I know that there is a price to everything, and a cost for everything. I know that if I try to cheap out, I will get cheap results. I also know that it's often better to spend a bit more, and to get a bit less, with higher quality. I understand that relationship, especially when it comes to wine.

Excutite Ergo Sum

I'm a little late in writing; not a lot, just a little. In part my tardiness is related to the shaking and weakness I am feeling in my hands. That same feeling is taking place in my arms, both upper and lower, and even in what remains of my legs and feet. Yes, I am shaking all over. This shaking is not related to diet; Katherine made me a full breakfast this morning and we had a terrific dinner last night. Nor is it related to alcohol; I barely had a couple of sips last night. Nor is it related to exhaustion; I slept well last night, for 12 full hours.

I've had days like this before, days where the shakiness and weakness seemed more intense than others. It's hard to type on days like this; not in the physical sense of moving my fingers, but in the sense that I keep making typographical errors. My typing is hit and miss. So I spend a fair bit of time stopping, correcting, going back.

The really odd thing is that I don't feel particularly weak at this moment. I can still do whatever it is that I need to do. What I really feel is unsteady, unbalanced, as if I am going to shake constantly in the middle of whatever it is I am doing. I just held my hand out and it looked like there was a small earthquake going on at the end of my arm, but I had no trouble picking up my coffee cup.

Speaking of coffee cups, it's a good thing mine was only half full. The shaking of the cup did not bring on a spill; it wasn't quite violent enough. It was clearly noticeable, and if that cup had been truly full, it would have truly runneth over, not through volume but through spillage. I have to be careful today, careful to minimize the slop and drop as I move along.

This is not new. This will pass. I am not sure if it is truly a part of ALS, a reaction to my medications, or some other mystery within me. It doesn't matter. It's just another part of life, my life. I shake, therefore I am. "Excutite Ergo Sum"; perhaps that should be my new motto, assuming my Latin is correct.

Elbowgate?

I've been watching the kerfuffle in the Canadian Parliament over the last few days regarding "Elbowgate". Now before even getting into the serious discussion about Prime Minister Trudeau's unintentional bump into the boob of an NDP MP, I want to ask a basic question. At what point did we decided that appending "gate" to anything makes sense for everything. Watergate, the fount of this expression, was a deeply covered up conspiracy. There is no cover up here. It's all on video! Live!

Now down to the more significant issue. Lost in all of this nonsense about an inadvertent brush to a breast, is the fact that it happened during one of the most significant debates we are likely to see in our legislature in this decade, perhaps in this generation. The true cover-up is that the media seems more interested in a tit-for-tat touch, as Elizabeth May calls it, than they are in the underlying debate around Physician Assisted Dying.

As one of the people very intimately impacted by this bill, I am deeply offended that something so trivial as an arm bump could draw so much attention away from this most significant of issues before the house. I am even more offended that people are playing politics with it, at a time when truly deep and thoughtful debate is needed on the bill at hand. What gives politicians the right to play petty with something so important?

Let me say this. Nobody is right here; nobody is wrong here. Nobody was assaulted anymore than they would be in a crowded elevator or during the rush for a super deal on Boxing Day, perhaps even less so. Now, thanks to a foolish media and an even more foolish Parliament, critical issues are being lost to the Canadian public. The NDP were wrong, horribly wrong, to use simple, childish tactics to delay debate on Bill C-14. The Conservative Whip was wrong to go along with such tactics. And the Liberal leader, our Prime Minister, frustrated all to hell with this stupidity, was wrong to go in and elbow him out.

Here is my last question. ARE YOU PEOPLE OUT OF YOUR FUCKING MINDS? Stop playing silly games. Stop blowing a simple bump all out of proportion. And stop fucking around while debating a bill which will directly, and powerfully, impact my life, and my death. GET IT!!

Remembering The Music

Music has always been a part of my life. I can vividly remember my Mom, sitting at her piano, playing and singing away in the back parlour of our small house in East Vancouver. I have this deeply permanent vision of my Dad, sitting in a smoke filled living room, surrounded by neighbours and friends, a Rye and 7-Up beside him, and his guitar resting in his lap, intermittently played between jokes and chatter.

Of course we had the typical records; 45's, LP's, even 78's. I can rarely recall a time when we didn't have something musical near at hand. I learned the dreaded recorder in grade school. I learned to play guitar and bagpipes in my early teens. My brother Adam became much more proficient at bagpipes than I; he still plays them today, and very well I might add. My brother Peter sings in a Barbershop Quartet, both competitively and for fun. Jimmy loves karaoke and does musical theatre. And Matthew has always had a terrific voice.

As children, whether in my Mom's home or my Dad's home, we sang. Not constantly, but enough that I remember. It was a wonderful distraction on long drives with a car load of kids. I can still remember all 12 of us crammed into our International truck, my Dad instructing us to start singing almost as soon as we left the driveway. I remember some of those songs, we children belting them out at the top of our lungs.

I miss music these days. I listen to it now and then, music on the radio or through my cable system. But it's not the same as my younger days. When we get together, my brother's and I will sing now and again. And Jimmy does his annual karaoke party in Edmonton each year, where we go and sing out in the countryside, on his property north of the city. But it's not with me anymore, in a visceral sense. These days music seems more of an adjunct rather than a core part of my life.

Perhaps it is my guitar. When I left Carla, I left my guitar behind. In the last few years of our marriage I played it rarely. Carla played hers a bit more often, but I just seemed to have lost the desire in those years. I wouldn't mind having it around me now, so that, if the whim hit me, I might take it and strum a few chords, or even just pluck an odd string or two, just to remind me of what I once played.

I doubt I could relearn it all. And even if I did, there will come a time soon when my physical condition would stop me from moving my arms and fingers as needed. My fine motor coordination is failing. But still, it might be nice, just to sit and feel the vibration, hear the sound, and remember the music.

More Changes

Meetings with my Occupational Therapist, or my Physical Therapist for that matter, are never a happy occasion. They inevitably occur because of a recent change or soon to be expected change in my ability or condition. When the PT visits, it's because my muscles are beginning to lose muscle tone and strength sufficient to need Range of Motion or other exercises. When the OT visits, it's because the weakness has become sufficiently profound as to need some form of mechanical solution to a physical problem.

A few months ago the PT came to see me about ROM exercises for my arms. Today the OT came to see me because my arms have weakened enough that we have to make changes in my apartment and equipment to allow me to continue to live independently, while losing arm strength even further. This assessment was driven by two basic challenges in transferring which are rapidly becoming untenable; transferring on and off the toilet, and transferring on and off the couch. I am rapidly becoming less and less able to do either.

The solution to the toilet involves getting a self-propelled commode chair. It's like a wheelchair, but with a toilet seat where you would normally find a regular seat. It's designed to wheel over top of the toilet seat, thus allowing me to go to the toilet, while sitting low enough to allow me to continue to use my beloved Toto Washlet Toilet Seat. I can even take it into the shower, so I would no longer transfer to and from my shower bench, but instead would just stay in the chair to have the shower. This would eliminate another transfer from my life, always a good thing.

The couch problem is both more difficult, and somewhat more "temporary". I can still transfer to and from my couch, just as I can still transfer to and from my toilet. It's becoming more difficult, in both cases. So I need a way to get me from my wheelchair to my couch. I thought a portable lift might work, but the OT suggested putting a ceiling track in place above my couch, and using the lift from the bedroom. This works on multiple levels; it means no additional equipment for me to manage, it means using the existing lift system more efficiently since I don't need it in the bedroom very often, and it means being able to lift in and out of my power chair as well as my manual chair.

The "temporary" part is my internal suspicion that I would lose the ability to get on my couch altogether, so at some point I wouldn't need anything. That suspicion was wrapped up in the knowledge that I would have to transfer to my PWC permanently once my arms get really weak; I won't be strong enough to push myself at some point. Transferring from the PWC to the couch is all but impossible, and the PWC will lean back and allow me to rest my back, so I don't really "need" to be on the couch. But I "want" to continue to sit on my couch.

The ceiling track and lift will allow me to get in and out of both my manual and power chairs. This means I can continue to use my couch long after I would have without the track. I like this idea a lot. It also means getting on and off the couch will be relatively less exhausting, so if I forget something like the corkscrew, as I did last night, I won't have to exhaust myself and give up, as I did last night, in trying to get it.

Both of these changes, and solutions, reflect the ever changing nature of my condition, and ALS. Life is a moving target for everyone, just a bit moreso for me. Changes that allow me to continue to live independently are good; the other changes generally not so much.

Nap Time

I'm tired. I don't even know why I am writing this right now. I should be taking a nap. I've been up since the crack of noon. Actually I woke up at around 11:40. A few minutes later Katherine walked in the door and said "get up!" She then announced that she didn't feel like making me breakfast and wanted to go out for lunch. So I struggled through my morning routine, skipped the part where I write my blog post, and went out for lunch, leaving my apartment at 1:00 PM

Going out for lunch entailed a drive to Cochrane, about 30 minutes away. There we stopped at Original Joe's, where I had my first, and second, coffee of the day. After a light lunch consisting of calamari and cheese toast, we headed home. Our wandering path home took us through Big Hill Springs Park, and down an area in north Calgary known as Symons Valley. The whole trip, all in, took about 3 hours, meaning it's 4:00 PM and I feel like I've been at it since before sunrise.

Sometimes I feel like I am fighting a losing war on all fronts; the physical battle, the emotional battle, the exhaustion battle, the psychological battle. I say losing war, not losing battle, on purpose. This war consists of many battles, with only one certain outcome; I will die fighting it. These days the exhaustion part is as tough as the muscle part, as tough as the depression part, as tough as the temporal dysfunction part.

I've gotten used to being tired all the time, used to the overwhelming sense that I am constantly ready for sleep. I've gotten used to the bizarre feeling of body exhaustion while my mind is still awake and alert. But I will never get used to this total warfare of ALS.

Today, while having lunch, I noticed that I adjusted my wheelchair so I could rest my arm while drinking my coffee. The cup felt heavy and my arm felt tired. I needed to provide it with a little extra support. When I drive, and thank goodness I still can, I rest my arms, one on the center console and the other on the door armrest. It's safe. I am still in full control of my truck, and it means my arms last longer, so I can drive farther. But in the end, it gets to me.

It's time for a nap.

I'm Getting Worse

I have, of late, had this profound sense of "getting worse". Of course there is no other "getting" with ALS; it's a uni-directional disease, progressing only downwards. Yet I have gone through long stages where it felt like little or nothing was happening, or at least where whatever was happening did not affect my life all that much. Now it's different, now I feel it deeply. I am getting worse.

There are no noticeable changes which I can point to that will allow most people to see what I mean. This disease is not dramatic. I won't wake up one morning to find myself immobilized. The changes happen slowly, incrementally, almost unnoticed if you are not prepared to see them. It makes it easy for some to deny the changes, in the hopes that if they don't see them then they are not really there. I assure you, there are real changes happening.

I have noticed, over the last month or so, a marked increase in the difficulty I have in transferring from my wheelchair to my couch. It's even more evident on the return transfer. I've also noticed a substantial difference in the work effort needed to sit up in bed when I get up in the mornings. Then there is the increasing difficulty of the transfer to and from the toilet; it's getting very difficult. My laundry basket is getting heavier, more difficult to lift. Groceries in a bag are becoming too much, especially a full bag.

These are all things that most people won't notice. Nor will they notice the increasing difficulty I have in wheeling my wheelchair about. That's because Katherine is always behind me, quietly pushing my chair to make it easier for me. As to the other things unseen, most of them happen when nobody else is about except for Katherine and my care givers. You probably can't see it at all, as there has been no dramatic change.

Trust me. I'm getting worse. I see it. I feel it. I know it. My arms are failing me, slowly and steadily. Perhaps not so slowly. I've said before that I can no longer make the transfer onto my truck seat. Only a few people have seen that. The rest is the quiet, slow, behind the scenes work of ALS. I can prove it, if you want to come and see. It doesn't matter though. It's real.

Photo Sadness

I'm feeling sad this morning. It's not because of ALS, although it could be a winner for sad-making pretty much every day of the week. No, this mornings sadness has to do with one of the side effects of my divorce. It actually started last night. I had visitors, including three young men, ages 8, 10, and 16. It reminded me of how much I love children, and how much I miss having my own. Those were wonderful years, when my kids were little. Those memories can still bring both a smile and a tear to me.

The sad part, for me, comes in two forms. First, I don't see my grandchildren often enough. That is mostly my fault; I am the one, after all, who moved to Calgary. It's expensive for my children to come here, expensive enough that it rarely happens. Second, other than those which I got from my Dad and a couple which I have digitized, I have no pictures of my children in their younger years. The notable exception is Ricky. Thanks to digital photography, I managed to keep copies of most of our pictures from 2002 onward, a time when Ricky was only 12 years old. So I have his teenage years.

It is my ex-wife's revenge, a spitefulness and cruelty, that she will not share with me any of our family photo albums. Her reasoning, as it has been explained to me, is that she is afraid she will not get those albums back after I die. I see the fear, irrational as it is, but I think it is more than that. My feeling is that she doesn't think I deserve to have these memories, since I "abandoned" her and our children when I left her, notwithstanding that our children were all adults and had pretty much all left home. This is another way for her to punish and control me, albeit a failing one.

This means I have no pictures of our children's early years; no baby photos, no childhood or pre-school photos, nothing from picture day at school, nothing from their graduation, no Christmas pictures with children climbing over mounds of gifts, no days at the beach, no pictures of them fishing at the lake. There are a million memories, but I would like to see a few pictures.

That's what is making me sad, that I should be denied this small pleasure, the gift of pictures from years gone by. I wish there was some court I could go to, some judge or commission I could appeal to. But they are her possessions, kept by her during the divorce. It did not occur to me that she could be so cruel and spiteful. I should have known better. As the saying goes, "Hell hath no fury like a woman scorned."

So I remember, then realize how much I cannot remember. And I get sad.

Betty's Run

I've set up my team site. I've sent out emails to everyone I know. Friends have already started to make donations. With all of this underway, I thought it might be time to share a little bit about Betty's Run for ALS, and what it means to me.

First, there is Betty; Betty Norman. Here is what the run site has to say about her. "Betty Norman was a very active 58-year-old Calgary woman when she was diagnosed with ALS in August of 1996. Betty's courage and determination to make a difference that year was the driving force behind the June 1997 "This One's for Betty" walk/run. Sadly, Betty passed away in her home within 11 months of her diagnosis and two weeks after the event that she inspired took place."

As with all things such as this, the story behind the story is the real story. When Betty was diagnosed, her constant friend, Jane Rivest, was with her, and stayed with her. Jane spent one day each week with her early in the process. Then, as the end approach, Jane was her full time care giver for the last four months of Betty's life.

Jane is also the moving force behind Betty's Run. She and a group of friends got together to start Betty's Run. Unfortunately Betty would only ever get to attend the first one; she died shortly thereafter. Since that first one, Jane has been at every run, organizing, helping, supporting, cheering people on. Jane is the angel, the spirit which continues on for Betty.

This year the ALS Society of Alberta hopes to raise nearly $500,000 with this effort. It's a month away and they've already raised over $60,000 of that goal. My personal goal was to raise $500, which happened very quickly. Then I reset it to $1,000, a goal which was achieved over night. I will change my goal to $2,000 today.

My team goal, my target for Team Terrific, is $10,000. I reality it would be wonderful to raise some audacious amount, something like $50,000 or perhaps even $100,000. But have neither the energy nor capacity to do what it takes to reach that many people. If Team Terrific can raise even close to $10,000, I will be very pleased.

There is a link at the top of the right hand column of this blog. If you feel moved to donate, just click that link. You can donate in my name, or in the name of Team Terrific. Either way, it will help me and many other PALS, through direct aid, through support, through research. And believe me, PALS and CALS need all the help we can get.

14 Hours

It's amazing the difference that 14 hours of sleep can make. Last night, after dinner, Katherine and I were sitting on the couch. I was dozing off, something that happens often around dinner time. Suddenly she sat up, looked at me, and said "You're going to bed". This was a different kind of dozing off; we both knew it. So she helped me with the transfer from the couch to the wheelchair, a task I likely would not have done without her help, something that would have resulted in me spending another night sleeping on the couch.

Once in my wheelchair, it was off to bed, at 7:30 PM. I fell asleep almost immediately, waking once or twice before she got me up to take my evening pills. I fell asleep again. The next thing I knew it was 9:30 AM, a full 14 hours after I went to bed. Even then, I didn't get up. Home care was coming at 10:30 for my exercises and shower. So I just stayed in bed, dozing off and on until the HCA arrived.

What surprises me is not the amount of sleep as much as it is having that much sleep in a contiguous pattern. My "normal" sleep requirements these days run between 10 and 12 hours a night. Typically I get around 10 at night, and then I take a nap during the afternoon, either before dinner or after. Sometimes I sleep as little as 8 hours a night, but then I really need that nap.

My exhaustion over the last couple of days is probably a combination of not enough sleep, too much activity, and the vagaries of ALS. It hasn't been a depressive period, witnessed by the fact that Katherine merely had to walk through the door to improve my mood. Nor was it completely an exhaustive period; I was napping and taking it easy as much as I could. It was just one of those things.

These Rip Van Winkle days happen every once in a while. Sometimes I just need more rest. Sometimes I don't really know why, or can't really pin it down. It just comes on, and wears me out. Then I collapse in a comatose of tiredness. The really sad part is that when I wake up, I don't really feel refreshed. Certainly my energy level is up, a bit. It's the tiredness, though. It never really goes away. Even now I can feel it.

I'm Afraid

I'm afraid. Or at least I was until Katherine walked in. Now, not so much.

Last night, after spending the afternoon and dinner with my daughter, Kate, I did some work on scheduling for the next few weeks, and then set up my donations page for Betty's Run. It actually took me quite a while, as I also emailed a bunch of people and posted to Facebook about Betty's Run. After I was done, I decided I would have a Rum and Coke, or perhaps two, and watch some Netflix.

I gathered up my supplies, including the required jug. I also got out some chips and a mug of water. One must be prepared. I transferred out of my wheelchair and onto my couch, a difficult enough transfer but one which I can still do. Once there, I settled in for what I thought might be a couple of hours of watching TV and enjoying a beverage.

Eventually, after watching for longer than planned, something I almost always do so perhaps I should just plan for longer, I started to get sleepy. However something happened to me. My willingness to make the difficult transfer from couch to wheelchair simply wasn't there. It was as if I had given up, seeing the move to the wheelchair as not worth it. I just didn't want to do it.

So I slept on the couch. All night. Until 11:45 this morning.

What worries me, what makes me afraid, is that even then, even when I awoke this morning, I didn't want to make the move, to put out the effort, to get off the couch and into my wheelchair. I am afraid that I might be giving up, just a bit at a time. I am afraid that I am at that point where I willingly give things to this disease rather than forcing it to take them from me. I am afraid I am losing my strength of spirit, along with the strength in my body.

When Katherine came in the front door this morning, my mood and energy level changed almost immediately. In the wisdom that is hers, she did not demand that I get up, but instead asked me how I felt. She did not insist I sit up, but instead fed me a few pieces of the thinly sliced beef she makes. She did not force me to rise, but instead offered me her hand to help pull me up, and then helped me transfer to my wheelchair.

She knows it is getting more difficult. I know it is getting more difficult. Without her walking in my front door today, I would likely still be on the couch. That's why I am afraid.

I Can't

There's a lot of "I can't" in my life. I can't walk. I can't go for a stroll on a beach or the riverbank. I can't hop out of bed, throw on something to wear, and rush out to have an early morning coffee with a friend. I can't make my own bed. I can't stand up to go pee. I can't pick up a box of wine. I can't... I can't... I can't...

Now before anyone says "there's lots of things I can't do", just think about this. Is it that you can't do them, or that you make choices which limit your ability to do them? Even though there are many things I can't do, I admit freely there are things I don't do, simply because doing them would limit my ability to do others things, or because doing them takes too much effort, or because I can get someone else to do it for me. For example, I say I "can't" unload my own dishwasher. This isn't precisely true. I can unload it, only the effort is exhausting and the reach is risky. I don't do it, if I can avoid it, simply because it's too much, and I can get someone else to do it.

I hear from a lot of people about things they "can't" do. I get angry sometimes when I hear them. It's not that they can't. It's that they choose not to, so that they can do other things. They use their choices as limiting language. I can't do this because I am doing that. What they should be saying is that I won't be able to do this, because I am already doing that.

The other thing I hear is people telling me I should focus on what I can do, and not worry about what I can't do. That's a pile of bullshit, especially when it comes from someone who suffers from none of my limitations. It's like people saying I should think more about what I have and less about what I have lost, when they have lost nothing themselves, at least not like I have.

This is not to say that there is not loss in the lives of others. It is to say that each of us has a different path, with different losses and different choices. So before you try to tell me to think more about what I can do, and less about what I can't do, take a moment to reflect on my situation. Remember that what I can't do is quite literal, not a choice, but a complete limitation. And it's a list which grows longer every day. When I say "I can't", it's a statement of fact, not a reflection of choice. And I am getting pretty tired of it.

I Can Still Drink The Wine

Wine making is, for me, just as much about making the wine as it is drinking it. Way back in the beginning, when I started making wine about 20 years ago, it was about getting a nice bottle of wine at a decent price; it was more about having the wine than making it. Fortunately back then I was in BC, where you could use a "u-brew" shop which would look after all the stuff in between initial ferment and final bottling.

Over the years I learned a fair bit about the process. That's because here in Alberta there are no "u-brew" shops; the law is different from province to province. In BC, the law deems that the act of putting in the yeast is what makes the wine. After that, you can keep the fermentation process going anywhere you like. And the act of bottling finished the process, so you are required to do that. On the other hand, here in Alberta the complete process is considered wine making, so you have to do it all in your home.

I don't care. Either way I like the process. It seems simple and pure to me. You start with grapes, or grape concentrate, and you end up with delicious wine. All the stuff, the gear, the equipment, the oak, the additives, all make sense to me. I can see why you need them. I understand what they do. I know what they are needed for.

For other people, those not inducted into the mystery, it all seems confusing, the different containers, the way I insist on sterilizing things, how I handle the wine, the racking processes. So many people who try it end up disappointed because what seems like an easy process can be difficult at times, especially if you don't stick to the directions carefully.

I know what it takes. I like what it takes. And I love that I can still do it, if not directly, then with the help of Katherine and others. I like that I can still create, that I can still make something even when trapped in my wheelchair. I can't lift the carboys but I can still manage the siphon. I can't do the bottling but I can still manage the labels. And of course, I can still drink the wine. I'll be able to do that long after I can no longer make it.

Food Bank

I am on the ragged edge of financial disaster each and every month. My mortgage, condo fees, taxes and utilities take up almost all of my disability and AISH cheques each month. Without the help of Katherine and others, I would have no food in my cupboards at all, let alone the wine I love to make and drink. The truth is that I run about $500 to $1,000 short each month, depending on expenditures.

In order to make this all work, I depend on Katherine for help, and I have been skipping my condo fee payment since the beginning of this year. This means I now owe $2,500 in overdue condo fees. This ignores completely the money I owe on credit cards. It's a pretty rough ride right now.

Rock bottom is now at hand. Today I met with a social worker regarding resources to help me keep going. It appears that it is now time for me to start using the Food Bank. The objective in this is to make me less dependent on Katherine and others for my food needs. Given my situation, I certainly qualify for access to the Food Bank, but I have to say, it is truly hard on me emotionally to have to make this step.

I spoke with the social worker about how this made me feel. I said I thought I could keep going, depending on the kindness of family and friends. She encouraged me to take advantage of the food bank so that money now spent on food could be directed toward other things, things which would improve my quality of life, things like social activities or wine kits.

I've talked to a lot of social workers and counselors since getting this disease. It is a common theme amongst all of them, that my only real focus should be quality of life. Whatever resources I have, whatever resources I can access, their advice is that my first choice, after mortgage and utilities, should be things which enhance my life, make me want to live.

The food bank is embarrassing. I don't want to go. I don't want to use it. Plus there are very clear limitations. I am allowed a food hamper every 30 days up to 7 times a year. What about the other 5 months? I don't want to go to the food bank; that, in and of itself, will reduce my quality of life, taking valuable time from me, forcing me to get up early and get there early, so I can stand in line for a handout, like a soup kitchen in the Great Depression. Fortunately the social worker can pick my food hamper up for me, given my mobility and health limitations, but only after I apply and am approved as being sufficiently poor.

Oh how the mighty have fallen. All of this is a cruel reality, once again re-inforcing why they call ALS the "bankruptcy disease". I don't want to do this, to go to the food bank. I am compelled to in order to keep living. That's the real problem; I didn't die on schedule. I'm living too long. I know there is a solution to this, but I am not ready to go yet. I have enough quality of life to keep me hanging on, even with this whole food bank thing.

I Love My Mom

It's Mother's Day today, that day in the western world, approximately, where we spend billions of dollars, send fields full of flowers and crates of chocolate, all in honour of our Mothers. Yet I know, from personal experience, that the greatest gift you can give your Mom on Mother's Day is the gift of time, a moment in your schedule where you call your Mom and tell her you love her.

No amount of commercialization can ever replace that single, powerful sentiment; I love you, Mom. Nothing you will ever say or do will have as much power as telling your Mom that her contribution to your life was the only one that really mattered, because if it wasn't for her, you wouldn't be here. For some of us, that expression of love is easier. Some of us have strong, powerful relationships with our Mothers. For others, it's more difficult; their relationships with their Mothers are somewhat more troubled, more difficult.

When I was diagnosed with ALS, I committed to calling my Mom every single day of my remaining life. I call my kids on a semi-regular basis. I call my brothers periodically; the same with my friends. But my Mom is special, incredibly special. She has earned this daily call, this constant contact with her son. I'm not perfect. There are days when I forget. There are also days when I phone twice, having forgotten the first call or been interrupted in our conversation. But my goal remains. I want to tell my Mom I love her right up until I can speak no more. And then I will send that same message by text, or through the voice of a machine.

I love my Mother. I appreciate all she has done for me in my life, all she gave, and gave up, so that I could have more, a better life. I love my Mother. I value the lessons she has taught me, the lessons of love, of forgiveness, of discipline, of caring, of compassion, of kindness. I love my Mother. I fear that the end of my life will come too soon, too soon for either of us.

It is the unkindness of ALS that she is compelled to see me go through this. If I could give her one gift, one single thing on this Mother's Day, it would be hope for a cure, or even some form of treatment, so that she would not have to go through the anguish of losing her son to ALS. But I can't do that. All I can do is tell her I love her.

Yuk Yuk's

I'm excited. I'm going to a comedy show at Yuk Yuk's here in Calgary today. One of my friends called and offered me a ticket. The word "yes" fairly lept out of my mouth. I love to get out to this kind of thing, an activity I can't much afford anymore. This is a social activity, a time to enjoy laughter and light heartedness with a group of people I don't see often enough anymore.

There's another reason I am happy to get out. I had a friend over last night for a visit. As she was headed home, I commented on how much I enjoyed her visit, and how it would be my last human interaction until Sunday afternoon. Katherine is busy all weekend, including Sunday evening. My daughter, Katie is coming for dinner on Sunday evening, so she is the first person I would see, unless I managed to get out over the weekend.

I had nothing planned for this weekend. Getting out seems to be more and more difficult, especially since I can't afford to do a lot of stuff. I have to make choices about what I do, not just financially, but in terms of being with someone. In my situation, it is almost imperative that I have someone along with me these days. Since I had nothing planned, my plan was to stay home and do nothing.

I used to be a lot more social. I thought nothing of heading out to a group engagement with people I know. There is something happening almost every other day. The problem is that I feel like I am a burden in so many of these situations, that I will impact the ability of the group to do anything which requires some level of mobility. I can't go for a hike. I can't go play walleyball. I can't go to the zoo. All of these things require endurance and strength. I have neither, so I tend to stay home or do stuff with Katherine where I am sure she can help me.

So today is exciting on a number of fronts. I get to do something social. I get to be with friends I don't see anywhere near often enough. I get to be out of my apartment. I get to laugh. All in all, that sounds like a pretty good afternoon to me.

Anger Is An Option, Not A Requirement

Anger. It's such a waste of time, such a waste of energy. I see absolutely no value in getting angry or staying angry. I used to be different. As a young man I was filled with anger. As I aged and matured, I came to see anger for what it really was, a way of expressing power in attempt to get my own way.  I used to think that my anger was righteous, borne out of the frustration of an unfair situation or some measure of disrespect. What I have come to see, as the years have gone by, is that anger is more about fear, my own fears, than anything else.

I used to get angry at my ex-wife. She would do something which I thought disrespected me as a Husband and as a Father. I would lose my temper, yell, say outrageous things, all in an attempt to express my displeasure at her behaviour. Other times I would get frustrated at her passive aggressive behaviour, and this too would lead to anger. And then I would have to apologize for my anger.

My favourite was trying to get her out of the house on time when we were going somewhere. She always seemed to find something which needed to be done just as we were getting ready to leave. She would then tell me that we were late because I didn't help her when she was trying to get ready to leave. I didn't help her because I didn't know what she wanted done. In some cases, when I did try to help, the list simply got longer rather than shorter. So I got angry, went and sat in the car, and thus became responsible for our tardiness. I was the one who ended up apologizing.

What I didn't know is that my anger was really an expression of my fear. I was afraid people would look down on me if I was late. I was afraid my wife would get angry with me if I didn't help. I was afraid that no matter what I did, she would be unhappy and blame me for it. I slowly began to notice that all of my anger was really about me, about what I wanted, about my desires and demands not being met. It was all about me. Anger is a selfish response.

I've learned over the years. I'm not immune to anger. Sometimes the roots are too deep, the fear to base to question. Mostly, though, I look at myself as I begin to anger and ask myself it it's really worth it, if my anger has any value. Sometimes it actually does, but it is essential that I know why I am angry, what it is that I fear. I've also learned not to hang on to my anger. It's simply a burden I do not need. There are so many other good things in life which I can do with that energy.

I've also learned to recast some of the things which make me angry into things I am grateful for. For example, I could get upset because Katherine folds my laundry differently than I do. But instead, I rephrase that emotion; I'm grateful because Katherine folds my laundry. Or I could be angry because someone comes late to my dinner party. Instead, I am grateful that someone comes to my dinner party. Inside of every bit of anger is something to be grateful for, if I can only find it.

My anger is still problematic at times. There are things for which I must still apologize. Mostly I try to let the past be the past and do better in the future. Mostly I try to be slow to anger and quick to forgive, both myself and the object of my anger. I don't like being angry; I would rather be happy. These days I have so much to be angry about that if I didn't deal with it, I would be miserable. And as my brother, Adam, says, "Suffering in life is mandatory. Misery is optional." I choose not to be angry.

PWC Practice

Yesterday afternoon Katherine and I went for a walk. Actually she walked. I motored along with her using my power wheelchair. The PWC makes it so easy for me to pop over to the mall, wander along to the local park, or go for a walk with Katherine. The main thing the PWC cannot do is go with me in the truck. At some point I will have to come up with a solution for that; either a different vehicle or some sort of trailer or platform at the back of the truck. Both of these solutions, however, recognize that this will happen at a time when I can no longer drive.

When we got back from our walk, I decided to stay in the power wheelchair for the evening. I wanted to see what it was like to use the chair indoors, a kind of experiment to see which was easier, using the manual chair or using the power chair. My main goal was to find out what the capabilities and limitations are, since one day soon I will be spending most of my time in the PWC, rather than the manual chair.

Several interesting discoveries arose out of this experiment. First of all, it's more difficult to transfer to the couch, sufficiently more difficult that I didn't even try. The couch is very low and this chair is higher than my manual chair. So I spent the evening in the chair, while Katherine sat on the couch. I didn't like that; I prefer to sit on the couch with her cuddled up next to me.

Secondly, I found that moving around the apartment was just as easy as it is with the manual chair, with the notable exception of getting onto the balcony. I didn't actually try; it was easy enough to assess that situation without actually doing it. I might try it today, but I can see the challenges immediately. On the whole, however, the power chair is relatively easy to use indoors. As an added plus, the lift option on the chair allows me to reach most of my upper cupboards, and that's a real plus.

The third discovery was one of mixed blessing. My PWC has a tilt option; I can lean backwards a long way. This feature allows me to take the pressure off of my tailbone, relieving the pain that is with me virtually all the time when I sit, which I do pretty much all day. On the other hand, leaning back makes it more difficult to operate the remote for the TV and Blu-Ray player, defeating my recent purchase of a new TV stand, unless I am in the standard, or near standard, seated position.

Fourth, we discovered that the transfer on and off the bed is substantially easier. When I went to bed, I parked the power chair beside the bed, raised it to a matching height, and simply slid sideways. The transfer in the morning was mostly the same, the only real difficulty coming from my skin sticking to the board, something which happens either way, and from my testicles snagging on one of the leg catches, something I noticed and adjusted for rather quickly.

The last major observation is the most inconvenient. I cannot easily transfer from the PWC to the toilet. The transfer onto the toilet requires a drop of about 3 inches. I can make that work for me. The transfer back requires a lift of that same 3 inches, something I clearly cannot do. Katherine and I discussed various options, including getting a portable lift system or perhaps putting a permanent mounted lift in the bathroom. In the end, we decided that transferring to my manual chair for my morning ablutions would likely be my best option.

All of this experimentation is predicated on one basic acknowledgment. I am getting weaker in my arms. At some point, not too soon I hope, I will be unable to easily wheel myself around my own apartment. I'm already noticing reluctance on the part of my arms to do so. At some point, not too soon I hope, I will have to use my PWC, even at home. So I need to learn about it now. I need to be ready for that day when ALS changes my life once again.

Weather Or Climate Change

One of my friends refers to my ALS as being like the "weather versus climate change" conflict. Simply put, any individual change in weather does not imply a climate change. Weather change is a localized concept; climate change is a systemic concept. What he is saying is that some of my aches and pains are like the weather; normal, expected with aging and life. Others of my aches and pains are like climate change; systemic, caused by ALS.

I've been dealing with loss of strength in my left arm and shoulder for a while now. This is clearly ALS related. It's long lasting and progressive. I am getting persistently weaker in my left arm, and my left shoulder is in consistent pain from overuse. My deltoid, trapezoid, tricep and bicep muscles are all fully engaged with ALS. There is no doubt; this is climate change, a systemic issue.

On the other hand, the muscles in the side of my neck have been sore and tired for the last week or so. The major muscle is the levator scapulae. These are the muscles which hold my head upright. I've noticed that later in the day it really helps to rest my head, either on my couch while slumped deep into the cushion, or while in bed with a pillow neath my head. The soreness and sense of overwork in the muscles in my neck starts as soon as I get up, and stays with me all day.

I don't know for a certainty that these muscles are weakened due to ALS or if some other process is at work. My money, as always, is on the big beast. If not today, if these muscle aches are something else, if this is just weather and not climate change, then eventually it will become ALS. All I have to do is wait. That's just the way it is.

From Person To Patient

There are times, with this disease, where I want to just scream, times when I want to just yell and stamp my feet in a child's temper tantrum. But I can't, not least because my legs no longer move. In reality those times of temper are often tempered by the realization that getting mad, shouting, crying, screaming, and whatever else I might do will help nothing, change nothing. It's simply an expulsion of precious energy for little or no good return, not even catharsis.

Last night, as I made my way to bed, I had one of those moments, a slice of time where I was plain and simply angry about my situation. Internally I demanded answers to stupid questions. "Why me? What did I ever do to deserve this? What did I do that was so wrong for God to punish me this way?" Of course I lack the energy to scream these pronouncements out loud, and the rending of cloth is far beyond my level of strength.

It's hard not to have these times with this disease, these moments when I am overwhelmed by what is gone from my life, what I have lost, that which I can no longer do. It's not hard at all, to roll into a self-pity party and let it wash over me like ocean waves. All I have to do is think about where I was a few years ago, and where I am now.

Usually these moments are triggered by an event. Yesterday it was a visit with the Home Care Nurse, and two discussions. The first was what I would do when Katherine goes out of town later this month on her visit to Hong Kong. Ultimately we decided I needed more home care, and arranged for someone to come in, make sure I was up, and make me some breakfast on those weekdays when I don't have exercises. So while Katherine is travelling, I will have a Home Care Aide in on Tuesday and Thursday mornings.

The other discussion was somewhat more challenging. We discussed the possibilities of me entering a long term care facility, or perhaps an assisted living facility. Lots of other people think this is a good idea; not me. While the option of going into a facility would likely be financially better for me, I would lose so much of what I love about my life. No parties, no winemaking, far less social life. I would move from being a person to a patient.

I'm told that there might be ways to make an assisted living facility work for me. I hate the idea; I want to die here in my apartment, here at home. The assisted living facility might actually improve my quality of life, but it would destroy my will to live. On the other hand, I would be a fool if I didn't investigate, if I didn't get all the information. Who knows? I might be wrong. But I don't like the idea. It's just another thing this disease will steal from me, my independent living.

Patio Life

I moved into my apartment in October, 2012. I could still walk, albeit with a cane. My apartment, at that time, was definitely not wheelchair friendly. At that time I didn't think I would ever need a wheelchair. About 5 weeks after moving in, I was diagnosed with ALS; it's hard to imagine that it all happened that quickly. Just a few months later, I was in a wheelchair, never to walk again.

When I moved into my apartment, one of the things which was of modest interest to me was the small balcony. It was cold and wintery when I moved in, so I figured I would use it in the spring and summer of the next year. Unfortunately by the time the weather had improved sufficiently to allow for patio life, I was in the wheelchair. The small balcony on my apartment has a large step to get over before you access it. The balcony itself is barely wide enough for wheelchair access. So I gave up on the idea.

Over the last few years I've tried different methods to access my barbecue, set up as it was on the balcony. Once or twice over the years I've tried placing it in the doorway, so I could cook on it without leaving the living room. A few other times I've had other people do the cooking while I looked on from inside. But all of that stopped a couple of years back. I just gave up. It felt like way too much trouble to access the small balcony and cook on the barbecue.

Then, this weekend, a bunch of my friends came over to bottle wine, and cook dinner. We had decided to have a hot dog party. Now understand that a hot dog party entails a lot more than a few wieners and buns. We had a ton of food, as is usual for my parties. The guys in charge of food preparation decided they wanted to use the barbecue to do the hot dogs. So one of them cleaned it up, and tided the balcony, and then cooked all the sausages outside.

I sat there and watched the whole operation, and suddenly thought to myself, "I could probably get out there if I really wanted to." I thought about what would be needed and realized it was almost nothing. All we really had to do was clear away the patio chairs which blocked my turning radius, and move the barbecue back a few feet to give me more room to turn. The biggest problem would be a small table to hold my coffee, or wine, or beer, or lunch.

Yesterday, that's exactly what Katherine and I did, although she did most of it. She moved the chairs and barbecue, then cleaned the floor. That's when I rolled into action. I found that I could still pop my wheelchair up enough to get it over the sill, and with a small amount of effort I could turn sideways. There I was, sitting on my balcony, enjoying the sunshine. We even cooked salmon on the barbecue for our dinner guests, and ourselves too.

It's easy for me to get locked into a place where I think things are just too difficult, just too much effort for too little reward. When I moved in here, it was winter; no balcony. When I went in the wheelchair, there was too little reward; no balcony. Then Katherine came along, helped me out, and encouraged me to make the effort. Suddenly a whole new way to enjoy the sunshine and outdoors is open to me. ALS will eventually take this away from me for real, but not right now. I'm going to enjoy that balcony while I can.

Unready To Wear

I have a uniform which I wear, a set of clothing that works for me. My required wear is, of course, my underwear; I prefer boxers. The next requirement is my compression socks. Thus I only wear black socks, because that is the colour I can get. Either that or some ugly beige that is supposed to resemble some sort of flesh tone for a broad cross-section of a multi-racial population. The top layer consists of blue jeans and either a polo style short sleeve shirt for warm days or a similar style long sleeve shirt for cold days.

There are three reasons for choosing this clothing plan; durability, flexibility, and simplicity. In terms of durability, jeans take a real beating, and my clothing can get pretty beaten up. Since most of my hand work is just above my lap, almost every activity from eating to doing the dishes involves some level of spillage onto my pants. I need pants which can go through a lot of washing machine cycles. In addition, transfers are hard on my pants as either Katherine or I am pulling on them somehow. Jeans can take it, so I wear them a lot.

The other nice thing about jeans is that they are accepted wear almost everywhere these days. If I am going to a show or a nice restaurant, blue jeans with a nice dress shirt can work for me. If I am going out shopping, blue jeans and my standard shirt will work for me. They are comfortable for long travel days, and mostly, somewhat easy to get on and off when I dress, although that is getting harder all the time.

Then there is simplicity, and a pull-over style shirt is the simplest thing going when it comes to getting dressed. Just pull it on and there you go. No buttons. In all of my dressing efforts, slipping on a shirt is the easiest thing to do. So this wardrobe is maintained, updated regularly as I ruin shirts and jeans along the way.

But every once in a while, I like to dress up. Today Katherine has invited friends over for dinner. This is something she does rarely. In fact the only other people she has ever invited to my place has been her sister and brother-in-law. So today is a first. For this, I wanted to put on a nice pair of dress pants and a nice, casual shirt. I grabbed same from the closet.

This is the moment I realized that I hadn't worn these pants for several month, nor this shirt since last summer. Since then, my body shape has changed substantially. The dress pants are now about 4" too small and the nice shirt barely holds in my belly, bulging at the gut, straining the buttons so they look like they are going to pop. I tried, but I gave up. It just wouldn't work.

While my weight has changed only a little since last fall, only a few pounds, my body continues to slump south, with all of my fat ending up around my belly. Pants which once fit, fit no longer. Shirts which were once loose are loose no longer. I am going to have to get rid of all my dress pants and start over, only this time with only one or two pair. Mostly I am going to stick with blue jeans and a shirt. It works, and they still fit.