Friday, 31 October 2014

Numbers Don't Lie, People Do

I've said it before and I will say it again; I am a science and numbers kind of guy. I love the way that mathematics and the scientific method have helped explain so much of our world and life around it. Of course there are questions that may never be answered mathematically; that's why we still have plenty of philosophers and religions.

It is the power of numbers that helps us understand things about ourselves. We, as human beings, are a part of a large number set, a pool of data that can help us understand our lives, taking the apparent randomness of so many things and giving them an explanation. Unfortunately that also means that we are a statistic for others; our humanity is not defined by the numbers, just explained.

On the other hand, I hate numbers. It is this statistical analysis of life which tells me that a normal life expectancy for a Canadian male at age 60 is 85 years. That means I should have expected another 25 years after my birthday next summer. Statistically, 90% ALS patients die within the first five years of this awful illness. On my next birthday, I will be at year four and a half with ALS, 85% of the way through the path to a 90% probability of death. The odds are pretty good that I will not see age 61.

Last night I was explaining ALS to a fellow in our group. He shows up at an event every few weeks. His home is in Edmonton but he works in Calgary on a regular basis. When he is in town, he comes out to Trivia and Name That Tune. Surprising enough, he had no idea I have ALS. So I told him about ALS, shared my story and pathway through the disease, and finished up by saying I probably had a year or so left, then I would die.

His immediate response, as is the response of so many, was "We're all going to die." My answer was "Sure, I'm just going to die about 25 years to soon." Then I did the math on that. I am going to miss about 30% of my expected life. That is a bit of a shocker, to realize that I am essentially going to miss on the last third of my lifespan. It's the kind of math I don't like; cruel, heartless, and completely accurate.

This is no theoretical estimate. These are the numerical facts. What about that last 10% you ask? After all, things seem to be going slowly for me. I get a lot of "you look great for someone who is terminally ill." That's the whole deal with ALS. You look great but you are dying. My disease is following a fairly normal progression, just not a quick one. The odds are pretty unlikely that I will be part of that 10%, and even if I am, I won't be part of it for long. ALS will kill me, about 25 years short of my allotted span. That's what the numbers say.

Thursday, 30 October 2014

Recognizing Change

ALS is an incremental disease, a silently creeping monster that makes such small changes that you don't notice them, until you do. There are two ways that the changes are brought home to you. One is the "Aha" event, where you haven't done something in a while and you go to do it only to find you cannot. The other is the "ooohh" event, where you know things are changing but you think you can keep going, until one day something happens which makes it clear that the end of this is coming.

Today has a great example of each of these things.

The first is my shower. I had my bathroom modified to allow wheelchair access, including a roll-in shower with a built in shower bench. Since it's installation I have noticed that it has been getting more and more difficult to make the transfer to the shower seat. It's not that the seat is badly positioned or improperly installed. It's a simple function of weakening arms.

I've noticed the increasing difficulty but not really paid a lot of attention to it; the progression has been slow and I have been able to make it work so far. This morning, after getting in and having my shower, I tried to get out. The fact that the floor is wet and sloped to the drain means my wheelchair does not stand completely steady even when locked; it slides. Up until today I have simply pushed myself across and steadied the chair on my own.

Today was different. The slide seemed farther; the effort to stabilize the chair seemed more difficult. I tried once, twice, three and even four times. Finally, after much adjusting and effort, I made the transfer. The effort was so great that my arms were to tired to lift me onto my bed; I had to use the sling lift, something that has its own set of problems. I said "ooohh" in my mind, realizing that the change was becoming significant.

After getting dressed I went into the kitchen. There I noticed the handle of my grill pan. It's a small, rectangular frying pan with grill ridges in it; it's great for doing steaks and chops. The pan itself was in the dishwasher, having been used to make Seared Ahi Tuna for dinner last night. I tried to put the handle on the pan, only to discover that I can no longer do this with one hand.

Of course, most people can't do this with one hand. Up until now I could, even when guests or caregivers could not. I had strong hands. Now, after a couple of weeks of not using the pan, I found I could not simply use one hand to squeeze the handle enough to reattach it to the pan. It was an "aha" moment; the gap of time between the last time I did this and now has been just enough to take me over that ability edge.

That's the way ALS works. There are always changes. Sometimes you realize it only about half way through the change. You don't see the start; the increments are too small. Once you get far enough that you go "ooohh", you see it a lot more often. You know change is happening. Other times the gap between doing something is far enough apart that you find, suddenly, you can't do it anymore. Your mind goes "aha", along with several other expletives. You know change has happened.

Wednesday, 29 October 2014

Exercise Me!

I have been stretched, not necessarily to my limit, but enough that it has worn me out. This is not some psychological stretching; this is a physical stretching that happens to me every Monday, Wednesday, and Friday when I am at home. On those days a Home Care worker comes to my apartment and goes through Range of Motion exercises on my legs.

The purpose of these range of motion exercises is to keep my legs as limber and loose for as long as possible. The flexibility in my legs allows me to transfer more easily, adjust in bed more easily, and move my own legs more easily whenever I have to do so. The exercises lubricate the joints in my legs and hips, and stretch the dead and dying muscles. Simply going through these exercises also works out my arms and shoulders, something that helps me keep what I have for as long as I can.

First comes a simple knee bend. I rest on my back and the care worker bends my leg up so I can grab my knee. I hold on to it for about 30 seconds then down it goes. This simple cycle is repeated five times on each leg, as are all the rest of the stretches. After that comes a vertical leg lift, where the care worker lifts my straightened leg up towards the ceiling; that's when I tell them they are making me into a ballet dancer. This particular exercise can really hurt as the muscles in the back of my legs have already started to contract; doing this exercise forces them to extend and they complain.

After leg lifts, it's a double knee bend, where the care worker hands me both my legs and I hold them in the bent knee position. With weakening arms, this is real exercise for my upper body as well as stretching for my lower body. This particular stretch reaches all the way into my lower back, an area of some pain now and again from sleeping in odd positions forced upon me by me inability to move my legs while sleeping.

Then comes my favourite; the calf stretch. In the oddity that is ALS, my calf muscles are still strong when pushing my toes downwards; not as strong as they once were, but strong enough to push back. The Home Care worker grabs the heel of my foot and forces my toes backwards, a foot position similar to that taken when you are running or jumping. Given that I can push back, I do, making this as much as exercise for the Home Care worker as it is for me. It's nice to feel at least one muscle still working in my lower legs.

The final two exercises are rotational knee bends, the kind that move my hips as well as my legs, ensuring the joint between the hips and legs stays lubricated and loose. The first is where they bend my legs halfway, put my feet down, and rotate my bent knees from side to side, first one way, then the other, while I hold my trunk even. This forces a rotation into my hips. The last is what I call the "butterfly", where still bent knees are spread apart from side to side, making my legs move like butterfly wings. Once again the Home Care worker does the work, spreading my legs and holding them in place.

These exercises do what all exercises do; they tire me out. Inevitably after a session I need to rest for a bit, recovering from the stress and strain of the physical activity. These exercises also give me a good idea of how the rest of me is doing, since I have to hold my legs and move my body during the stretches. That's why my arms hurt so much afterwards; they are getting weaker and my legs are getting harder to hold.

Soon the Home Care workers will begin working on my arms as well; they are weakening to the point where my own activity is no longer sufficient. It's no fun; it's reality.

Tuesday, 28 October 2014

Jabberwocky, Sort Of

"The time has come," the Walrus said, To talk of many things:"
"Of shoes--and ships--and sealing-wax-- Of cabbages--and kings..." Lewis Carroll

I think of these lines from Lewis Carroll's "The Walrus and the Carpenter" often, whenever I think about my present and my future with ALS. Charles Lutwidge Dodgson, the man behind the name "Lewis Carroll" was a brilliant man with many talents. Among other things he was a  mathematician, logician, Anglican deacon and, in the early days of a now ubiquitous art form, a photographer. In other words, he was a creative man who loved words. Me too.

The reason I think of these lines, however, has nothing to do with Jabberwocky. It is my own life that has this "through the looking glass" feel to it. When I contemplate my future, that contemplation goes only as far as the next few months. When I think of the many things in my life, I am continually struck by the inanity of it, where the upside is down and the downside is up. I don't think much about ALS killing me; I think a lot about how I live with ALS. I am broke, yet I am wealthy. I am alone, yet I am surrounded by friends and family. I am sad, yet I am happy. I have so many things to consider, yet I don't.

I just made breakfast, only it was noon. I look at the food I eat, considering the calorie count, not to keep it low but to keep it high. If I make something unhealthy, I should probably make more of it. My doctor tells me there is no such thing as a bad calorie with ALS. So when I make something as unhealthy as Kraft Dinner, I add extra butter and even a bit of mayonnaise to make it higher in calories. I also add an egg, some wieners and perhaps a bit of onion to make it even better, or worse. Yet the mere effort of making something good for me to eat leaves me tired enough that I don't want to eat it.

Just a few days ago I was on the open Pacific fishing for marlin. Today I am wondering if making a meal is worth the effort, if there is something else I can eat instead of what I am cooking. This morning I woke up shaking, almost unable to hold a glass of water. After the weekend I am planning on driving down to Kelowna and then over to the coast. These are the oddities of my life, that I can be completely weakened in one area and yet completely functional and active in another.

It is both sides of the looking glass, this space I am in. My arms are fasiculating right now, muscles wobbling like mad. Yet I just finished chopping onions and eggs. My belly fat keeps me alive, my belly fat drives the atherosclerosis that wants to kill me. I am perpetually exhausted yet rarely am I really tired. I am broke but I just went to Hawaii. There are so many things in my life that just seem backwards, odd, a misshapen reflection. And there are many things to talk about.

Monday, 27 October 2014

From Kona to Calgary

I had planned on writing this blog about five hours ago. My plans were interrupted by a "short nap". My definition of a "short nap" seems to be changing these days, although in defense of myself, it was after a red eye flight from Maui to Calgary; I finally got to my apartment at about 8:30 AM and thought I would rest for a couple of hours, perhaps until about noon at best. Noon rolled by while I was fast asleep, then 1:00 PM, and 2:00 PM. By 3:00 PM I was moving about. At 4:00 PM I thought about getting up, and by 4:45 PM I finally made it.

Yesterday was a bit of a slog, in traveling terms. Our flight from Kona to Kahului, on Maui, was at 4:55 PM Hawaii time. We spent our morning packing and then went for lunch at the local restaurant in the small boat harbour just down the hill from the hotel. The security folks from the hotel took Emma in a golf cart so she wouldn't have to walk down the hill; I just let it roll. On the way back, the security folks once again came for Emma and they sent someone along to push me up the hill; I just let it roll.

Ukule, the Hawaiian word for "fish", is the kind of place I like, with ordinary people eating simple food, usually with an outdoor patio; here in Keauhou Bay the whole restaurant is outdoors, except for the food preparation areas. Birds flit in and out, skipping along below the tables looking for scraps, stealing bits from the tables. Insects also buzz about, seeking the sugar in the many rum variety drinks served with local fish. A mongoose dashes across the street, chasing nothing or being chased by something, I am not sure which.

After a lazy and long lunch, we headed for the airport, checking in with Ohaha Airlines, a regional affiliate for Hawaiian Air. Once again I was asked about a dozen times if I could walk. Once again I answered "no" each time. Once again my comments about "cannot stand" were forgotten or not read or simply ignored by the airport staff. Once again the handrail of the seat would not go up. Once again I was lifted over it, like a sack of potatoes. It's getting to be routine.

The flight to Maui was uneventful, and short. About 10 minute after take-off we started our landing approach, ending it with a successful arrival at Kahului Airport. Once again the staff were unaware that I needed to be taken off with assistance in the "aisle chair". Once again I was asked if I could stand. Once again I was lifted over the unmoving seat rail.

When we were inside the airport, the young man assisting us gave us a bit of a fright, telling us that he didn't think Air Canada had a flight to Vancouver on Sundays, only Saturdays. Since we had a ticket, I suspected he was incorrect. Sure enough one of his co-workers corrected him, saying it was the start of the Air Canada winter schedule.

Boarding of the flight home actually went much better, although once again I was asked repeatedly if I could stand. Emma took charge on this one and simply told the flight crew not to ask me that question. On the plane, the handrail lifted. The ground crew had checked it beforehand after I related my prior experiences. The flight itself, all in darkness, was completely uneventful. On deplaning, only one person asked if I could stand; I got a little short with her and she got defensive, so I eased up and explained my frustration. She continued with defensiveness so I just let it go. I had no fight left in me.

What with arriving at 7:00 AM, the wait to get off the plane, customs, and finally Calgary traffic in the morning, I got home at about 8:15. I debated writing and thought to myself "Perhaps I should just sleep first, just until noon." And that's how I got here.

Sunday, 26 October 2014

My Kind Of Normal

It's going home day today. We have a flight at 5:00 PM over to Kahului on Maui. After a 3 hour layover we board an Air Canada flight from the tropical treat of Maui to the icy reality of a Calgary winter. Even though it is only early fall, just a month past the autumnal equinox, the frost and cold of an Alberta winter is settling in upon us until next April, our only relief the occasional Chinook.

I don't mind heading home. I am kind of looking forward to it, to getting back into my own home, my apartment where everything I need is near at hand, where friends will come to call, where I will make dinner and wine, where my routine will once again settle on me, a mantle of the familiar. Travel is certainly wonderful; I will do this again and again until I can do it no more. Home is wonderful; whenever I travel I will look forward to my return to what I laughingly call "normal life".

Of course nothing is normal about my life. I don't work, I sleep more than half the day, I go out late at night whenever I can. I was thinking about this yesterday, how there really is little in my life that resembles what it used to be. Perhaps the only holdover from healthy days is my social activity; I had that before ALS, I have it still. I am thankful for this.

Normal for me is looking at my feet, curled over at the top, claw like, the toes a deep purple, lifeless, motionless. Normal for me is seeing the dead muscles in my legs, bags of useless meat surrounded, kept in place, by the skin container that holds them. Normal life for me is wheelchair struggles and tired arms, slings and lifts, handicapped toilets. Normal is not normal.

Yet even with this abnormal normal, I have a pretty good life. Here I am in Hawaii, packing to go home after a wonderful week of adventure and fun. Here I am with a friend, making me laugh as she moans about her lack of packing ability. Here I am getting ready to cross an ocean by jet plane, sleeping at 35,000 feet. Here I am planning another expedition already, one for January. Here I am planning dinner with my daughter on Wednesday, hunting next week, a visit to the coast to see my Mom, my children, my grandchildren.

That's normal for me. Busy, active, living. This week Hawaii. Next week Calgary. The following week the forests and mountains of BC and then the coast. After that? Who knows!

Saturday, 25 October 2014

Skunked Again

I am still in bed, resting after a long day on the water yesterday. We got back from our fishing and snorkeling tour at about 6:00 PM. We went to our room to rest up a bit before dinner. I fell asleep. When Emma woke me  at 7:30 PM to go to dinner, I said she should go without me. I needed to rest. I stayed asleep pretty much until around 10:00 AM this morning. I think I was pretty tired.

The fishing tour yesterday was a success for Emma; she had a great time snorkeling in the waters of the Pacific, drifting in and about the coral reef in the small cove hosting the memorial to Captain Cook. The obelisk commemorating his death is right on the spot where he fell. It is a beautiful little cove, now a marine park, with abundant small fish and a host of coral types. Emma loved it all.

I, on the other hand, did not do so well with the fishing; I got skunked. Marlin fishing is a low probability exercise. Only about half the charters actually get a bite. Of that, about half the fish get off the bite. So only about 25% of charters actually bring home a big one. Yesterday, of the dozen or so charter boats leaving the harbour, only one returned with marlin as far as I could tell.

Still, I was disappointed in the outcome. Actually big boat charters like the one yesterday have never worked out well for me. I've been on board these expensive trips in Florida, a couple of times here in Hawaii, and even in BC. On each of those trips, I was skunked; I've never caught "the big one" while on a commercial charter.

On the other hand, I have caught an awful lot of fish in my life, both large and small, from the lakes and rivers of BC. I've caught numerous trout and salmon, so much so that my kids thought candied salmon was a normal part of everyone's diet, and catching smaller trout was fun but not serious fishing.

Still, it would have been nice. This will likely be the last major fishing trip of my life. I would have liked to catch something, even if it wasn't a marlin. Nobody likes to get skunked.