Tuesday, 28 February 2017

Underwear Adventure

It may not be Monday, but it's time for a video blog. I did this one with my phone, so please forgive me. And trust me, you gotta see this.

Monday, 27 February 2017

Moving On

There is an old line about the fellow is accused of having a drinking problem. He says; "I drink, I get drunk. I get drunk, I fall down. I fall down, I go to sleep. If I'm asleep, what's the problem?" Of course the reality is far different than the aphorism.  There is no need to get drunk. Not everybody falls down, at least not at the right time. And certainly not everybody goes to sleep.

I admit to having a drinking problem, except that at this time of my life I see no need to correct it. I most certainly don't drink and drive. I rarely drink a lot out in public, or at least not a lot for me. I love a nice glass of wine, or three. I will happily drink a half bottle of scotch or more in a night. It's not like I have to get up and walk, so I can't really tell how bad it is until I skip right past the fall down part and go directly to the go to sleep part.

Every once in a while, though, the curse will get to me. I will start with one, and finish when the bottle is empty, or near enough that I can no longer tell. I will sit and drink for hours, a binge worthy of my old man, and his old man, and so on. I can pretty much tell you when this is going to happen. It is at times of transition, where I am compelled by a change in state to recognize once again how shitty my life can be these days, often in direct contrast to something good happening.

Saturday was one of those days. I got home from this great road trip to find my house empty, void of any meaning except that which I put into it, deathly silent, eerie. Friday night there was too much to do, and I was too tired to do it all. Saturday morning I got into laundry. In the afternoon it was grocery shopping. Then came the evening, the quiet night, when the gloom of nightfall settled over me, bringing my own gloom in to roost.

So I opened one of my newly purchased, large bottles of Scotch, a 15 Glenfiddich single malt. I had a glass, then another. Suddenly 6:00 PM became midnight. There was still scotch. Night became morning. I had passed out in my chair at some point, but awoke in the morning, still drunk. I was not asleep. I was a problem.

I dozed. My friend Todd brought sushi. Emma's Mom and Dad brought some wine making gear they wanted to give to me. Everyone left. I slept some more. I cancelled dinner with Dion and went to bed at around 8:00 PM, still feeling the effects. I took a sleeping pill.

Blessed normalcy returned to me this morning. My guideline in life is that if you can't do the time, don't do the crime. I did the time. Now it's another day. I'll move on. But perhaps without a glass of Scotch this time.

Sunday, 26 February 2017

More Catheter Woes

I've just spent the last half hour changing my pants and my underwear. If you wonder why it takes so long, talk to those who have seen me go through this process. It is anything but easy. It involves leaning from side to side, wriggling, jiggling, pulling and yanking. By the time I am done, I am exhasted.

Yet here I am, sitting in front of my computer writing about it.

The reason I had to change has everything to do with these damn catheters I wear these days. The kindest thing I can say is that they are not to be trusted. They leak. The flow back when full. They come off. They disconnect from the drainage hose. All in all, I do better without them. At least when I don't have a catheter on, I don't have that false sense of security. I know, when not wearing a catheter, that I am at risk.

The road trip taught me that, at the least. Never trust these damned things.  I do better without them. It's not the failure. It is the false sense of trust. When I wear one of these things, I feel like I can pee without regard to the outcome, as it were. Yet the outcome is the very problem. The outcome doesn't always make it into the bag. Often it ends up on me instead, through failure of the seal on the catheter, through failure of the connection of the tube to the bag, or just because the bag at the end of all this is overfull.

I admit that the overfull bag is my own fault. Even the seal on my penis is kind of my fault. After all, I wiggle and move a lot. That causes the seal to fail. Yet, none the less, I have the false sense of security with these damned things. I simply cannot trust them, even though I want to. In the end, it is a problem of mind. I can wear the catheter only when I go out in my power chair, or perhaps my truck. Beyond that, I am better off without them, here at home. relying more on going to my bathroom and peeing in my jug. That is perhaps the most important lesson of the last few weeks.

Saturday, 25 February 2017

A Thousand Things To Do

Home. I am up and about, finally. I woke up early enough, just as I have been doing for the last three weeks, at 8:00 AM. Then I wondered about what reasons I had to get up. While there are a thousand big and little things to be done after a long road trip, none of them seemed truly urgent to me this morning, nowhere near as urgent as they did last night when I got home. So I stayed in bed for a while, and a while longer, until finally the threat of noon and bodily functions were enough. These two things are not related. It's just coincidental today.

First of all, there is unpacking. I started this last night, until a couple of people online pointed out to me that I could leave this until today. All I really needed were my pills and my wound dressing kit. After five weeks, I am still changing my bandages every couple of days. This is singly the worst laceration I have ever endured in my life. The amazing thing is that no knives were involved in any way. Sharp is sharp, steel or no.

This morning I will attack the rest of the unpacking, followed immediately by laundry. At least, that's the plan. Let's see how I feel in a couple of hours. Unpacking will take me that long. It's not just dirty laundry. It's putting away the trinkets, large and small, purchased while on the road. I have absolutely no idea where the Texas sized margarita glass will end up, let along the fancy box it came in. There are a dozen fridge magnets, but only one shot glass. There is the scotch. Then there are all kinds of personal care items to delicate to mention here that need to be re-integrated into my supply system.

There's got to be at least three loads of laundry, based on the weight of these suitcases. Then there are the sheets I stripped off of my bed when I left. They need to be bleached again, but I can't bleach them until I get more bleach from the grocery store. So groceries show up in there soon enough.

I had no milk for my coffee this morning. Fortunately I had Bailey's, so I made do. There is no fresh fruit in my fridge, no fresh bell peppers, not even potatoes. I have sliced cheese and meat in my freezer, but no bread for sandwiches, not even frozen. I'm out of salad supplies like lettuce and tomatoes, no cucumbers or spinach either. So shopping is definitely a priority. I might actually get to that today.

Rather than worry about all things that need to be done, I am going to worry about the next thing, just getting unpacked. Then, perhaps, groceries, maybe even while I have a load of laundry or two in the dryer. It will all happen. Fortunately I am at home, so I can take my time. I'm happy to be home; I will miss road tripping until the next one. Then, all over again.

Friday, 24 February 2017

Road Trip Lessons

I'm home. David has completely unloaded my gear from the truck, finally to get to his own home and get a break from me. It's hard to believe that just yesterday morning we were in Rapid City, contemplating what to do with the weather moving in on us, snow threatening to close the roads, ice coating the asphalt at almost every turn. When David looked at me and said "I want to head for home", not only did I understand but I agreed completely. It's been 21 days. That's enough.

It's kind of odd being here in my apartment. There is nobody with me, no David to help with getting me in and out of bed, no housekeeping to bring extra towels, no restaurant to make food for us, no bar with three different kinds of beer on tap. What there is, however, is a well stocked freezer, a well stocked bar, a well stocked wine rack, a bed that works for me, a shower that works for me, a toilet that works for me, and home care coming on Monday. I think I can adjust.

There have been a couple of important realizations for me on this trip. The first, and perhaps the most significant, is that I can still do this. I admit there were a couple of bad days, very bad days, which unfortunately happened while I was at my brother's place. It had nothing to do with him or his wife or their home or anything like that. David hit the nail on the head when he said it was most likely a culmination of stress and strain from the trip, finally hitting all at once, held in place prior to this only because of my strong desire to get to  Adam's place. When I finally got there, it all let go.

On the other hand, the trip home was almost inconsequential in terms of physical or bodily challenges. I had accomplished my goal; I got to see Adam, Jim too. The way home was a true wander throughout the mid-US states. I was relaxed, thanks to those two days at Adam's place. David was somewhat relaxed, dealing with me is never easy. My body behaved well, and only once or twice did exhaustion really kick in.

That's the other thing I learned. You can't beat the exhaustion. It's going to happen, so I need to let others take over when I hit that wall. David was more than willing throughout the trip, ready to step up when my body gave out. He assures me it wasn't all that much work, so I will believe him and look forward to doing another trip, able to tell someone it's not that hard.

A third lesson for me was the type of road trip. For me it has almost always been driving to get somewhere, stopping for a brief visit, then barreling on to the next destination. David has a different approach, stopping every hour or two to visit some little roadside oddity, acquiescing to my love of historical places and capitol buildings, looking up the unusual. I've not done that often enough. This trip I discovered how much fun it is to go slower, cover less ground, and see more.

The last lesson I want to share is that of gratitude. For the last year I have seen a lot of myself slip away. Weakness has encroached increasingly. Tired has become my common state. I have had no real focus, felt no real purpose. Yet with this trip I am enlivened again, looking forward, hoping for more. Yes, I am an explorer. I am so grateful to have those who will help me explore.

Thursday, 23 February 2017

Little Big Horn

Yes, it's late. I know it's late. It's been a long day with many miles behind us. That's the way it is today and tomorrow, maximum miles as we head home from what will be a 21 day journey by the time we are done. I don't even feel guilty about writing late. What I do feel is exhaustion.

Once again I have been reminded that, while I may take a vacation from my everyday life, there is no way to take a vacation from ALS. More than once on this trip I have felt the discomforts, the challenges, the failings of my body. More than once on this trip I have felt the need to apologize to David and others, to express repeated thanks to David and others, to rest and stay while David got out and explored. It is the nature of ALS, to take so much and leave so little.

Actually I thought of that today while visiting the Little Big Horn battlefield with David, the site of General Custer's famous last stand. As a child, Custer was presented to me through television and movies as a glorious hero. As an adult I have come to realize what a vain and brutal man he truly was. Like Jesse James, Armstrong Custer was a product of the Civil War, trained to kill whomever he felt was the enemy.

In his time, the white man was to the Indian as ALS is to me, a constant and continual taker, a destroyer of life, steadily diminishing everything. While Native Americans may have destroyed Custer and his small army at the Little Big Horn, in the end the sweep of history and the power of European invasion withered away the Apache, the Sioux, the Crow. In the end, victory in a small battle did not change the broad course of events.

I am here, alone in a battlefield, raising weakened arms in defense of an already destroyed body. I am fighting my last stand, holding my flag aloft against the winds of time, struggling to stay alive while my world disintegrates around me. I wonder if either Sitting Bull or Custer thought about the terms of their battle in this way, that history would, in the end, take them all, Indian and white? As the Native Americans raised arms in defense of their struggling body, did they know that the ultimate battle was already lost? When Custer felt the sting of the killing arrow, did he know that the tide of victory had already turned?

It doesn't really matter, not at all, how I fight my last stand. My death is assured, one way or the other. So instead of worrying about whether or not I win or lose, I will focus on how I fight this battle. The tide of time will sweep over me, no matter. I may be Custer. I may be Sitting Bull. Either way, I am on the field of battle, holding myself upright. That is all that matters.

Wednesday, 22 February 2017

Wounded Knee

David and I are well ensconced in the bar at the Hilton Garden Inn here in Rapid City. We each have a beer. We have each ordered some dinner. He is happily tagging away on his iPhone while I write this blog on what has become our shared laptop for this trip. It wasn't the plan; it just worked out that way.

It's been a long and interesting day today with a couple of really fun stops, and one stop which reminds me once again of the unfairness of history and life. The weather is getting to us today as well. Yesterday, in Grand Island, Nebraska, we finished our day with temperatures reminiscent of summer; warm, soft, somewhere near 70F. This morning when we awoke, our day started with cool temperatures approaching 60F. Yet my phone dinged with a snowstorm warning for western Nebraska, South Dakota and Eastern Wyoming. Tonight, when David shivered outside unloading the truck, temperatures were near freezing. Tomorrow's forecast calls for a high of 28F. We've gone from summer to winter in a single day's drive.

Both of our fun stops today involved cars. In Grand Island, David found a body shop with all kinds of cars and odd characters mounted on poles in his shop yard, all of them displaying the shop's skill with body work and paint. These whimsical installations used characters from cartoons and movies, all presented in the most humourous way. The other stop was at Carhenge, a now famous installation of cars in the Nebraska farm town of Alliance made to look like Stonehenge in England. There is no reason for this display. Someone just woke up one day with an idea and it took off from there. It's now internationally famous.

The saddest part of our day came near the end with a visit to Wounded Knee, South Dakota. This small town, the epicenter of the American Indian Movement of the 1970's, was host to both the Wounded Knee Occupation in 1973, where Native Americans where compelled to occupy their own land to gain public and government attention to their well-founded grievances, but it is also the site of the last great battle of the Indian wars, where the American government simply slaughtered Native Americans in order to take their land. This last battle, the Massacre at Wounded Knee, happened in 1890. It was to be the Sioux Last Stand, the last of the Lakota tribes to defy the white man.

This village is in the midst of the Pine Ridge Reservation, one of the poorest places in America. There are poverty stricken towns in the deep south of the USA who fare better than this forgotten place. Here, where there were once proud warriors of great tribes, there now stand beaten mobile homes, garbage strews about in the streets, abandoned homes, wrecked cars.

I am not one for "white man guilt". I will not rend my shirt over misdeeds of the past. My ancestors suffered roughly at the hands of conquerors too. All of us have evils done in our past. Those of the Native Americans are the most recent. Yet we do, as a society, have a responsibility to ensure that all of our populations have opportunity, have a chance at the front row, rather than perpetually being left behind in the back of the bus, forever disadvantaged by race and colour. Wounded Knee is a reminder of this inequity, both in 1890 and in 1973.

Tuesday, 21 February 2017

Forgetting David

Grand Island, Nebraska; a little bit of nowhere about a million miles from everywhere. Nebraska is a big, flat space, the equivalent of Saskatchewan in Canada. There's miles and miles of nothing but miles and miles, only here the crop is corn, not varied grains. Still, it is pretty in its own way, as all small towns can be, settled here along the Platte River.

I fear that the road trip may finally be affecting David's mind. This morning, for the fourth out of five tries, he left stuff behind in the fridge. The previous times it has merely been water bottles, although we intentionally left some cheese behind one day. This time, however, it was serious, serious enough to consider a return to St. Joseph. This time he forgot a small bread loaf from dinner last night, an extra which he begged off of the waitress. He really liked that bread, really.

Speaking of dinner, there was another incident for David at the restaurant. It was dark when we arrived, a late, long day on the road. After checking into our "cowboy" motel, we went off to the Whiskey Creek Grill, a small chain property here in the west and mid-west known for great steaks and BBQ. David was driving when we arrived and did what he has done innumerable times on this trip. He grabbed my wheelchair, set it up, and brought it around to me.

As I said, it was dark. It was dark enough that I didn't notice until he actually transferred me down into the chair that he had forgotten the seat cushion. I noticed because I was about 4 inches below normal height, and my rear was not softly cushioned at all! After I stopped laughing we decided to just leave it be; it was to be a "short" night for me. When we returned to the truck, he was able to boost me that extra few inches onto the lift seat, so it wasn't really a bad thing except for my feeling reduced in stature once again.

Maybe his is not losing his mind. Maybe it's not the road trip. Maybe it's not the many, many things he does every day as we roll across the countryside. Maybe, just maybe, he's just like the rest of us. He forgets things now and again. The last trip it was luggage left in the parking lot of a hotel, and a full change of clothes in a hotel room somewhere. This trip is a step up. So far, bread. And a cushion. Not bad, really.

Monday, 20 February 2017

Dumping A Wheelbarrow

David has found a new way to get revenge on me, a new way to reduce my battered dignity even further. And it's funny! Even I laugh when he does it, so it must be funny. It has to do with how he helps transfer me from my manual wheelchair onto these very high hotel beds. Before getting into detail, it's important to understand my transfer challenges of late, and how they are impacted by travel.

First of all, I rarely use the transfer board at home anymore when transferring from my manual chair to my bed, a transfer which typically takes place at the end of the day as I get ready for bed, at a time when my arms are tired and I am generally exhausted. It's an uphill slope from my chair to the bed. So although the transfer board might be faster, I use the sling and lift instead. Not only does it take less energy, but it is all round safer than a manual transfer with tired arms.

In the mornings I make the transfers to and from my commode chair, a chair which is almost level to my bed at home, yet still lower than most of the beds here on the road. If I can do it, fine. If I cannot, David drapes a towel over my exposed body and just gives me a bit of a push, a boost up the slope of the board.

In the evenings, when I am transferring from the wheelchair, it's a much bigger boost. At first David just grabbed my jeans and heaved, like he was giving me a boost into the truck. This generally ended with my on my side halfway up the board, and him injuring himself somehow. His knee is still recovering from one of these attempts.

His next step was to just boost me along the board, something which required more of a pushing kind of thing and less of a lifting kind of thing. Once again I typically found myself halfway up the board, laying on my side. David would see the challenge, walk around the bed, and yard my arms to pull me up the rest of the way.

Then, the other day, David had one of his rare moments of anger and frustration at what he was having to deal with. There I was, halfway up the board, this time still sitting. There he was trying to push my gently up the board so I wouldn't fall over, again. He just said "To hell with it", picked up his end of the transfer board, and dumped me onto the bed.

Think of it like a wheelbarrow. I am the load, David is the worker. He simply tips up the board like it was the wheelbarrow, and I tumble down, a heap of humanity, lumped up there at the end of the transfer board, on the bed in near perfect position. Yes, it is ungainly for me. Yes, it is undignified for me. Yes, it is easier on David. Yes, it gets me into just about the perfect place on the bed. Yes, it is funnier than hell each time. David gets an easier task; I get an amusement park ride. Everybody wins!

Sunday, 19 February 2017

Resting Up For Winter

David is having a day off today. I mean a full day, almost. He did bring breakfast up to me when he got up. Beyond that, though, he has had the rest of the day to himself. He took the truck sometime around 11:00, I think. I as still dozing. He has spent his day exploring the sights of St. Louis, finding the things only he can find, without expectation of return until around 7:00 PM.

I, on the other hand, get a day of rest here in the hotel room. I am not trapped. I got myself up, dressed and packed. The room we were in did not have a roll-in shower, so the hotel moved us to another room today, one with the shower. David had his stuff ready to go before he left. I managed to prepare and pack my stuff, then the hotel staff came and moved it all for us. So here I sit, writing my blog in the small town of O'Fallon, just outside of St. Louis, alone in my quiet hotel room, enjoying the sun streaming in through the window, coffee beside me, guilt free.

For David to get a day on his own to explore is one of the happiest things for me on this trip. He is constantly concerned for my well-being, so much so that I had to almost demand that he take off today. While he assures me he is having fun, I know that the work of looking after me along the road, even if it only includes luggage handling and pushing me in my chair, is wearing and time consuming. Today, if he sees something up a flight of stairs, he can go. Today, if something is at the top of a hill, he need not worry about pushing me up there. This is a good thing.

The quiet time for me is a good thing too. It gives me some extra rest, a chance to nap somewhere besides in the front seat of the truck. It gives me a chance to write some post cards to my grandchildren, a chance to do some laundry, a chance to take it easy. I need this every few days, and it's tough to get on a road trip.

We are headed westward, northward, back into winter. Kansas City tomorrow, then South Dakota after that. It is there where winter will truly be on our backs again. By the time we get back to Calgary, we may need to go somewhere warm again. Maybe a Caribbean cruise for a week or two. Hmmmmm.

Saturday, 18 February 2017

In Nashville

We remain in our wander through the south, debating the straight run to St. Louis against a side trip to Bowling Green and maybe to Fort Knox, just outside of Louisville. As is our routine, David is in charge of trip planning. I remain in charge of annoying ideas for side trips and late in the day hotel finding. It works.

The south has turned on us, stealing away the warm sun, replacing it with grey overcast, rain, and cool temperatures. We are back to long sleeve shirts. This will be the first cool, if not cold, day since we left the cold, cold north behind us somewhere in southern Colorado and northern New Mexico. It's the kind of day where driving will be more challenging, where short stops to see roadside attractions will be even shorter. Once again, David is working on that.

I'm not in any hurry to go home, yet I miss home constantly. Of course I miss home, my own bed, my well setup washroom, food when I want it from my own kitchen, sleep as it calls me. Yet the road has its own call, a silent siren of places unseen, of adventures unlived. To roam without responsibility, this is a kind of freedom you don't get at home, surrounded by four walls and routine. Of course it has to end, doesn't it? I wonder some days how long I could go if I stayed at low cost motels and ate at inexpensive restaurants. I suspect my biggest cost would be gas for the truck. I do love to wander.

So today we will go to St. Louis, likely to take Sunday there as a day of rest. Then it will be north and westerly again. Where? I'm not sure. What I am sure of is that David will find something interesting along the way. That's all I really need.

Friday, 17 February 2017

How A Road Trip Should Work

It's been an interesting kind of day. We stayed up last night, far later than planned. We got up late this morning, or at least I did. We left Montgomery later than planned, adding a stop at the State Capitol along the way. We certainly didn't drive as far as we planned today, nor did we arrive when we thought we would. Yet here we are, just outside of Nashville, Tennessee, settling in for the night.

David says this has become less of a road trip, more of a meander, like we were on a river slowly twisting and curling our way, stopping as the river bends, knowing where the next port might be, knowing that we can stay or go as we please. That meander almost took a complete detour today as we discovered that the Lynchburg Jack Daniel's Distillery was a mere hour off to the east of us. Alas, common sense prevailed. We are both exhausted from our late night last night. We wanted to be in and settled much earlier today, and asleep well before 11:00 PM, maybe even 10:00 PM.

David and I clearly have different needs and wishes on a trip like this, none of them competing with one another, just different. For example, David likes to eat tried and true. One of his favourites is a MacDonald's Big Mac, although he has discovered the Grand Mac on this trip. I, one the other hand, am an epicurean adventurer. Sushi is always on the menu for me; fish in any form is virtually absent from David's menu at all times. I love a good wine; David loves a new, different beer whenever he can find it.

It's hotel choices where the difference truly shows. While my needs for a roll in shower and the desire on both our parts for two separate beds drive the base of our hotel choices, I am good with that configuration in almost any hotel better than a Motel 6. On the other hand, David definitely prefers the upscale properties which I can no longer afford. He assures me this is not a problem. I believe him. My comfort is in the shower, the ability to sleep in a comfortable bed, a clean room. David's comforts include the quality and grade of hotel as well.

But it works. We both had that momentary dream today of heading off to Lynchburg, We even talked about a detour to Fort Knox. We wake up each morning with a general idea of direction. David has a working plan for the day. I go along, tossing out questions and ideas enough to make him wonder. We both see things and go "Oh shit! We need a picture of that." It's how a road trip should work.

Thursday, 16 February 2017


I forgot. It can happen. I forgot to write. It started this morning when we were in a hurry to get out of the hotel in Slidell, LA. I figured I would write in the truck. Then I offered to take the first shift of driving. After a couple of hours exhaustion hit, so instead of writing while in the passenger seat I slept. Then we got Selma, AL. I was so entranced by this place that I forgot again. So off we went to Montgomery where I had a couple of glasses of wine at the Embassy Suites, and I forgot some more. Finally we ended up in the lounge where we had dinner and beer, and met some fascinating people, and once again I forgot. So here it is in the middle of the night and I am writing yesterday's blog, with the time reset so I can keep the days in order. Of course, it's still today in Calgary, so I am all right.

Selma. We went to Selma today. For some reason this seminal city in the American civil rights movement has always had a very deep meaning to me. It has always held an almost mystical place in my mind, a place where great men and women came together to demand a change, a change for freedom, a change for a rightful place in society. It is where men and women of great rhetorical power, like Martin Luther King Jr., could stride into the history books of America, declaring their rightful place in this riven culture. It is here where they demanded that race no longer determine their future.

I have so much admiration for these women and men, people who withstood the beatings, the burnings, the murders, the violence. It is they who truly define what it means to stand up against a system of oppression, declaring that what weakens one of us weakens us all. We may live as mere cogs in a gigantic social machine; it does not mean that one cog has any less value than another.

Today I crossed the Edmund Pettus Bridge. I could not walk; I am entrapped, be that in my truck or in my wheelchair. I am entrapped, as were they. Yet even within that entrapment I am made increasingly free by the efforts of these people who walked so many years ago. I am made free of colour, of race, of ethnicity, of origin. With these women and men who walked bravely into the tear gas and dogs, I am made human.

This is Selma.

Wednesday, 15 February 2017

Thank You, David

There is no end to the thanks I need to give to David for helping me so much on this trip, for working so hard to make it happen, to keep it happening. As I sit here, typing away, he is loading the truck with my commode chair, all our luggage, various additional bags, and all kinds of small stuff. This is just routine for him. Let me tell you some of the more challenging things he has done to help me on this trip. Let me leave out some of the most challenging, embarrassing ones for me.

First of all, there is dressing and undressing. After watching several of my performances in dealing robing and disrobing, David finally gave up and said "I know you can do this, but this is silly. I am going to help." He is unafraid to pull off jeans, and even underwear if necessary, in order to make our mornings go quicker and easier. He is unafraid to haul up jeans and pulls on shirts that get stuck to me when I pull them on. He simply grabs stuff and does it, without complaint.

Then there is the whole step and fetch it routine. Here I am sitting at the table typing. David walks by me without a word, pours a cup of coffee, puts milk in it, walks over and puts it down beside me. Yes, I can get my coffee. I didn't because I wanted to type. He did, because he is a good person. Other things like that happen often. I need a towel; he gets a towel. I need a push to get into the bathroom; he pushes. I forgot my pills; he grabs them from my suitcase and puts them beside me. And the list goes on, and on, and on.

Of course there is the driving. He drives a bit more than half the time. But the driving is the least of it. When we stop, he asks if I want to get out. Getting me in and out of the truck is a non-trivial task, especially now that we have broken the wiring for the wheelchair winch. He has to manually lift the wheelchair in and out whenever I want out. Yet he constantly encourages me, telling me it is not problem. When we are on the road, he is undismayed by my announcements that I need to pee into the jug, or that I "just blew a catheter", or that I want to stop to get something to eat. He takes it all in stride.

Then there is the biggie, the transfers. The transfers into and out of the truck require that he "boost" me up and guide me down from the lift chair to the wheelchair. The transfer from one side of the truck requires that he push me across the transfer board and pull to help me sit up again. The transfers on and off of beds, with me in various stages of dress, mean he has to pull, push, lift and sometimes even drag me fully onto the bed.

He is doing a ton of work. I am sure he will tell you that very little of it is particularly difficult for him. I disagree. The constancy of it all must wear on him. He rarely says anything about it, except that "it's fine". Yet I know for a certainty that this trip would not have happened without all his help.

Thank you, David

Tuesday, 14 February 2017

Depends Don't Work So Well

I have discovered that the Depend solution is not really a solution at all, simply a replacement of one system for another. Wearing both the Depend undergarment and a catheter seems to make failure all the more certain rather than adding security to my life. In the last two days I have experimented, wearing a Depend with a catheter, wearing a catheter without the Depend product, and wearing the Depend underwear without a catheter.

No configuration of these incontinence products deals with the single basic fact of my life. I can still control when I go pee. It's just the mess that goes with peeing while in a wheelchair, with incomplete drainage, that causes me the most grief. As long as I have a jug with me, I am safe to go pee. On the other hand, having either the Depend or the catheter has a much messier failure than simply a bit of over-spill or post urinary dribble.

Today I am wearing neither. I have come to a kind of decision about this, a pattern of how and when these various products will fit into my life. When I am at home, or something resembling home, such as here at Adam's place, I will wear neither. I will simply do what I have always done, using my jug and going to the washroom during the day just like everyone else. At night, no matter where I am, I will use a Depend undergarment, but still pee into my jug, and still have a towel at hand. The job of the Depend will be to capture late leakage. The towel will be there to clean up after my continually bad nighttime aim.

When I am going out, either in my power chair or in my truck, I will wear a catheter. This simply eliminates the need for finding a wheelchair accessible washroom. I will not wear a Depend over the catheter; it just makes things worse. This will, however, be my time of greatest risk. This will be the time when failure of the catheter will cause the greatest damage. It is a risk I have to accept.

As with all things in life, if all you have is a hammer, everything is a nail. I have more tools in my toolbox, both emotional and physical, for dealing with this issue. It does not have to dominate my life. There will be failures and accidents. I will survive this too. I'm going to use all the tools I can to make my life easier to live. That's what really matters.

Monday, 13 February 2017

Wearing Depends

I've finally given into the requirements of this damned disease in what I feel is one of the last battlements of my body. For the first time since I was a toddler, I am wearing a diaper. Okay, it's not actually a diaper. It is called a Depend "FIT-FLEX Underwear for Men". The real irony in the naming and packaging is the claim of "Maximum Absorbency". Who the hell would buy anything less? Who would go into the store and say "I want less absorbency. That way they leak faster."

In fact today I am wearing the continence equivalent of a belt and suspenders. I have a catheter attached and I am wearing a pair of these accursed undergarments as well. This whole step feels like a losing battle in this conspiracy of illness. Even so, I am untrusting of the effectiveness of this coverage. I am still concerned that there will be leakage, an incident, a miss in the hit and miss game of going pee.

I don't actually suffer from incontinence per se. I struggle with inconvenience. For example, I cannot pee all that well sitting upright anymore. I pretty much have to lay down and aim for the jug in order to fully empty my bladder. The change in my muscular structure mid-body means I cannot hold my stomach or diaphragm in place to provide a clear path for emptying. The bulk in my core just lays there atop my bladder, squishing it closed rather than forcing it open. Laying down takes that pressure off, relaxing me enough that passage occurs.

Inevitably though, there is the "male over 60" issue of that remaining last bit, and it forever bedevils me as I lay there waiting. Or things get started before I can get into position, laying down, jug in hand. This is especially true when I am asleep, meaning nights can be damp. Depends may help, but the issue is not incontinence. Once again, it is the inconvenience of the process for someone who is losing critical core muscle control.

At the end, it seems I will become as a child again, forced to wear a diaper at night, and sometimes even during the day. I will need to change myself every morning, setting myself up for success or failure as the day dictates. Of course, there is more to my morning process now, making dressing a longer and more tiring activity. That extra bit of exhaustion leads to more of an urge to pee, at a time when I am most likely only half dressed. From now on, first will come the diaper, then will come the rest of getting dressed. But then I will have to undress to change my diaper, because the activity and exhaustion of the morning will cause me to pee. It's all a nasty conspiracy to destroy my self-esteem and self-confidence.

I hate these damned things. I hate this damned disease.

Sunday, 12 February 2017

In Lake Charles

I'm just instructing my sister-in-law on how to make a Lemon Martini. Adam and David are talking about road trips. We have wine, Adam and I, and David has a beer. Adam has just served us this amazing Beef Bourginon. David, Adam, and Lisa are chatting away while I type this very late blog entry. Life is good in Louisiana.

David and I had a good drive today, from San Antonio to Lake Charles. It started with a visit to the Alamo, continued down I-10 to Houston and along the way David found a couple of interesting stops with the kinds of things only he can seem to find. Unfortunately I slept through them. I had managed to drive the first couple of hours but a wave of exhaustion hit me. I had to let David take over. It's not a bad thing, just frustrating.

Being here at Adam's for a couple of days is a good thing. It's gives us both a rest. It gives David a chance to get away from me. It gives me a chance to sleep in and rest. It gives us both a chance to do laundry, shop for a few things, do nothing, whatever. We might even get to doing a photo blog for this trip. I want to do it. It's just difficult. There is only so much I can do these days and two blog posts a day just seems to much.

Mostly I am looking forward to sitting still for a day or two. We are already talking about the drive back, how long it will take, where we will go. Oddly enough, neither of is is completely enamoured of going to New Orleans. It's Mardi Gras season and the city will be insanely crowded. Hotels cost an incredible sum and the streets will be jammed. It would be fun to see if I could walk; being in a wheelchair makes it a lot more difficult.

It's a relax day tomorrow. That will be a good thing. It's time.

Saturday, 11 February 2017

In The Truck Day

David and I are barreling down the I-10 towards San Antonio; he's driving. The weather is wonderfully warm, a pleasant 81F after a high of 92F. There's nothing but a light skiff of cloud in small patches high in the sky. It is a beautiful day here in central Texas.

It's been mostly a road day today with a couple of interesting stops. This morning we got a couple of Buddy Holly stops in; we were in Lubbock, after all. It's where he was born. Then we were off to Amarillo, a very artsy kind of town. It was a surprise after so much Texas here in Texas. There were some terrific sculptures in the main boulevard as we headed towards the center of town, and a park with several bronze statues of Dr. Seuss characters.

The real find was Fredericksburg. Actually I have been there before, several years ago. I was in Austin for the weekend and rented a car to explore the region. Somehow I ended up in this beautiful Texas town with a lovingly restored main street, except the town is German in origin, as might be guessed by the name. So all the shops sold western gear and Texas trinkets, while all the restaurants sold German food and snacks. It's quite a mix. Plus David got to explore this wonderfully bizarre curio shop filled with odd statues, strange pottery, and every other kind of knick-knack you can imagine.

I've spent most of the day in the truck. I just did not feel up to getting out of the truck. My energy is limited and my stamina passes quickly. Some days I can do it; some days I cannot. Today was one where resting made more sense than burning energy. Tonight we are staying in San Antonio on the famous Riverwalk. Tomorrow, my brother Adam's place for a couple of days. I'll get a much needed rest.

Friday, 10 February 2017

That's How We Roll

It's morning, and I really want to write this morning. It's not that I have anything spectacular to say. It just feels better to write before the day really gets underway. I have the energy this morning too, not like yesterday. My stamina may not be what it once was, but when it all comes together, I can still go a mile or two, especially in the truck.

I plan on driving this morning. We are headed to see a fellow PALS, something I try to do on every trip. It helps me to meet these people in person, these people with whom I interact on a daily basis online. David is worried that seeing someone further along in progression than myself might be a challenge for me. It's not. In fact the reverse is true. I really dislike meeting people who are not as far along as me, or who are early in the process, especially those who have hope for a cure. I have accepted my fate. It is presumptuous of me to comment on their fate, but reality is what it is.

I do have hope. Today I hope to have a nice chat with a fellow PALS. Today I hope to visit the birthplace of Buddy Holly. Today I hope to have a good meal, taste a good glass of beer, feel the warmth of the sun on my skin. Today I hope to take yet another breath, to see yet another new thing, to sense another new sense. Today I hope to live what life is available to me. When this hope is gone, truly all hope is gone.

Texas is a big place. We will be rolling across this varied state today, tomorrow, and the day after. Then, finally, we should arrive in Lake Charles, LA to see my brother. That is unless the San Antonio stop to see the Alamo and walk the Riverwalk is just too enticing and we stay for another day, or unless we determine that we need another detour to some other oddball place. We might. That's how we roll.

Thursday, 9 February 2017

Exhaustion Day

It's been a long, long day today, in a couple of different ways. First of all, it takes some talent to make the three and a half hour drive from Gallup to Santa Rosa into a 10 hour day. David and I have that kind of talent. It's easy when take side trips to Los Alamos and Las Vegas, NM. I wanted to see the Main Gate at Los Alamos. David wanted a picture of Las Vegas without the casinos. I got what I wanted but by the time we got to Las Vegas it was dark and we couldn't find any really good signs.

So, having achieved on goal and failed at another, we headed across the low mountains that separate Las Vegas and Santa Fe from Santa Rosa, about an hour's drive. The last stretch was uneventful until we came to our stop for the night, the Super8 in Santa Rosa. There we received our best surprise of the day. The Super8 Motel room is exactly as advertised. It has two beds, standard height. It has a handicapped accessible washroom with proper safety bars, it has a roll in shower. The room is large, I can turn around easily. In fact it is more of a suite than a room, with two semi-separate sleeping areas.

After checking in, we went for dinner in a place which offers us even more surprise. a classic 50's diner on Route 66 called the Route 66 Diner, with all the 50's accouterments including counter stools where the backs spelled out ROUTE66, one character per stool. The menu offered Mexican and more traditional meals. I ate Mex; David at spaghetti.

The downside of the day, the part which cause some issues, had to do with me, unfortunately. I hit the wall today in terms of energy, both emotional and physical. We wanted to get as early a start as possible this morning, so David was up at 7:30 AM. He had his shower first, then I got up at 8:00 AM. It was tough for me to get dressed and do transfers thanks to overheight beds. Hotels just seem to think that overheight beds mean luxury. For me, they mean exhaustion.

By the time I was up, dressed, packed, and into the truck, it was nearly 10:00 AM. I was exhausted, really beat. My emotions were tapped out and all I wanted to do was sleep, so David drove all day today. It is the first day where my hands have not touched the wheel. In fact I slept most of the drive; I think David managed to capture some of my snorts and snoring on his Go Pro. I woke myself up several times with the noises I was making. I do not sleep well sitting up, not at all.

Even so, by the end of this day I was simply tired. The rest while David drove helped a lot. The ability to not have to decide anything, nor to have to get in and out of the truck, that helped too. While I am ready for bed, I think my exhaustion phase has eased. So tomorrow, it's off to Amarillo, then Lubbock, and maybe Abilene. We'll see how I do.

Wednesday, 8 February 2017

Four Corners

Pagosa Springs, CO. The snow is as high on the sides of the road as the top of the truck. The snow on the yards nearby is over three feet deep. Yet the temperature outside is in warm to  say the least, probably ner 50F. I'm sitting here in the truck, waiting for David to do some shopping at the local WalMart, wishing the sun wasn't quite so bright, wasn't heating the truck cab quite so well.

Yesterday was a day of road adventure, first with a vain attempt to gain access to the NORAD facility at Cheyenne Mountain. Unfortunately they no longer offer public tours or even public access. The road is marked with a sternly worded sign saying "Official Business Only". It looked like there was a guardpost just up the road. We did not want to get shot, so we stayed away. It's kind of funny because they used to take busoads of tourists up there to see the gate. No more.

Our next adventure was a place called Wolf Creek Pass. There is a mildly famous song by C.W. McCall about a trucker trying to survive a wild ride with a load of chickens going done the hill to Pagosa Springs from Wold Creek Pass. The pass was along our route, so David and I decided to see what the hill was all about. I can confirm that the road down  to Pagosa Springs from Wolf Creek Pass is not just frightening, but is down right dangerous, especially when it is snowing, foggy, and the roads are covered in ice. We made it.

Today we have two objectives again. The first is the Fur Corners Monument, that concession to the Civil War her ein the US which needed a fast solution to these western states. The Union government wanted then as non-slave states. The Confederacy wanted to incorporate them into its camp as slave states. The Union won, both the war and the creationg of the states. In order to simplify the process, the simly drew lines along the meridians and latitude and longitude, creating the four corners where Utah, Arizona, New Mexico, and Colorado all meet.

After our adventure into the wilderness of Four Corners, we are off to Albuquerque, NM for the night. Did I spell that name right? It's a standard at spelling bees. We are hoping to get in decently early, so we can do some laundry and get something to eat other than burgers and fries.

Tuesday, 7 February 2017

Worst Wheelchair Room Ever.

(I am editing this blog entry with the following proviso. The Front Desk Manager just came to my room. I asked him what made this room a wheelchair accessible room. He said "Nothing. This is an accessible room for deaf people." I asked him why the woman who checked me in said it was a wheelchair accessible room. He said "I don't know. I wasn't here. Our wheelchair rooms are larger rooms with accessible setup for a wheelchair. We have two rooms like that. Both were sold last night."

So I asked again, "Then why did she tell me this was a wheelchair room?" He had no answer other than she was wrong. So that covers the rest of my blog. I did not have a wheelchair room last night, not at all.)

I am sorry to have to say that my worst wheelchair hotel experience is at a chain I had, up until now, come to trust for its high quality standards. Sure, they still screw up. All hotels do that. Sure, the chain is usually higher priced that other locations. It's what I pay for wheelchair access.

Not this time. First of all, this is not a wheelchair accessible room at all, regardless of what the Hilton Garden Inn system says. It is a normal room with a wheelchair sticker on it. It is a narrow room; I can't turn around in my wheelchair. It has a standard, small bathroom; to go to the toilet, I have to back in from the hallway and aim my commode chair over the very low, almost Japanese style low toilet. I cannot turn in the bathroom; I can't even turn to get to the sink. There are no safety bars; there is a towel bar mounted on its side.

So what do I do? First of all, I let the young lady at check-in last night know how upset I was to pay a premium for such a terrible room. Unfortunately David and I had already gotten settled and I did not want to move unless it was an improvement. So David looked at the other "wheelchair access" room. It was EXACTLY the same. This tells me all the rooms in this hotel are like this. They could have picked any room and stuck a sticker on it.

I am so thankful for David. Without his help, I would be stuck. He has had to lift me onto beds and off of chairs. He has had to get all kinds of things for me once I was up on a bed so high my feet don't touch ground when I am seated. He has had to hike equipment up and down repeatedly. At least I drove yesterday. That's is one thing I can still do.

Unfortunately our faith in this hotel chain has been broken. David and I have decided that we are going to check every room from now on before unloading anything. Ricky and I developed this routine a few years back when we did road trips. I did this myself when road tripping. I had hoped that the standards of the Hilton Garden Inn would remove this extra work. It appears not.

Monday, 6 February 2017

Central Colorado

There's an old boating joke about most powerboaters. The reason they never look behind them is that they would be ashamed to see what they have left in their wake. Actually, I'm like that in some ways. I spend enough time looking backwards that I really don't like it, yet I still do it. My one rejection of that backward looking way is my blog. I prefer to write in the mornings, in anticipation of things yet to come, in faith of the day facing, reporting on things past while I have had a night to sleep on them.

Today looks like a wonderful day. There is a clear sky. The cold is lifting; it's already 50F or 10C, your choice. I wonder if I am in the US I should just stick with Imperial measurements rather than offering metric as well. Ah, what the hell. You'll figure it out. The snow is melting already and the roads are wet, although the air is dry enough that most moisture evaporates quickly. The only thing which might possibly impact the day are the high winds buffeting us, and everyone else, as we head on down the highway.

After two late days on the road, although not long, we are looking forward to a short day today. Our intinerary includes as stop for refreshments at an 80's themed bar in Fort Collins, and a stop at the Mork and Mindy House, made famous on their TV show. The 80's seems to be the theme of the day here in central Colorado. Our current working plan, by no means certain, is to stay in or around Denver tonight, a total of 4 hours road time today.

David is really concerned that we make it to my brother Adam's place in Lake Charles by the weekend. He is most concerned that I get to spend time with Adam, and possibly even Jim, my brother who just happens to be visiting there as well this week, while still leaving us an unhurried return trip. We will make it. I am not worried.

Perhaps the nicest part of this trip so far is my return to seeming regularity. I was worried that my prior condition would return; I've brought plenty of preventative medications. So far though, it's been good. I just have to learn to trust my body again.

Sunday, 5 February 2017

Long Days, Late Nights

It's been quite the 48 hours. It's hard to believe that yesterday afternoon we were just leaving Calgary. That's about 815 miles or 1,315 kilometers; about 13 hours of driving time. Yesterday when we left Calgary the weather was just turning nasty with blowing snow and chill temperatures. That same weather followed us all the way to Coombs, the border crossing into the US.

That's where the only real excitement of the trip has come so far, other than those two stunned deer I almost clobbered on the way into Casper. At the Sweetgrass border crossing the CBP agent in the booth seemed really unhappy. He directed us in for secondary questioning. So David parked the truck and went inside. Fortunately the agent there was much more pleasant. Instead of demanding that I come inside, she came out to the truck for my secondary questioning. This seemed to satisfy her and we were off into the night.

We got into Great Falls later that we wanted, thanks to our slow start. Nothing, however, was going to deter us from heading to the Sip And Dip Lounge. We got there, and in a moment of temporary wisdom I asked David if he would mind checking things out for me to see if I could get in. He returned with sad news. I could get in, mostly, but the lounge was very small, and worse, jammed to the gills on a Saturday night. He doubted I would be able to navigate my way through the crowd. So we set a goal of checking it out on the way home instead.

By the time we got to bed yesterday it was after 11:00 PM. I slept well, having taken a Zopiclone right away. David says he slept well too. He must of. It was after 10:00 AM this morning when he finally woke up! It was to another slow start for us. Maybe this isn't such a bad thing.

Today was a terrific run through rural Montana. We stayed off the Interstate, taking the "back road" from Great Falls to Billings. The start was rough, with temperatures well below freezing. There was snow fog and low cloud so the only thing we could see around is was whiteness with the vague shapes of hills in the distance.

Then we passed out of the low cloud and fog. Suddenly, behind us, was this fabulous low range of mountains, rugged and serene, standing off in the distance where we had just been. We could see a vast inner plateau of low, flowing coulees, their soft edges and gentle slopes sliced here and there by deep ravines and wide vales cut by slow running rivers. It was all frozen, all white, a seeming wasteland yet covered with cattle, deer, and antelope. Yes, they still play here.

We saw some great roadside attractions, the kinds of things David most appreciates. At one place it was the Medus-Hay, a sculpture of Medusa made out of an old tree and sculpted hay. At another it was the Harley Davidson shop with a skeleton, scythe included, riding on a Harley. We tried to go to an old bar which was supposed to have a creek running through the middle of it, but it looked a bit dodgy so we gave it a pass.

By the time we got to Wyoming, night had fallen. Our decision at this point was to drive into the darkness, heading for Casper, or call it a day and stop at Sheridan or even Buffalo. We went for Casper, arriving here at 9:00 PM. Yes, another late night. Possibly another late start tomorrow. Who cares? We're on holiday!

Saturday, 4 February 2017

Road Trip Advice

I've finally gotten round to all those preparation and packing tasks which were in my plan for yesterday. I've packed, but I'm beginning to think I should re-pack, only this time into two suitcases so I can use one for day-to-day and the other for stuff I need over the course of the trip. I've stripped the sheets from my bed and put them in the laundry. I've gathered together the medications, bandages, maps, first aid kits, and snack box to take in the front of the truck with us.

Now all I have to do is empty the garbage and recycling, something I will ask David's help with, and run a load of dishes through the dishwasher. Oh, and a few other things, and a few other things, and a few other things...

David just texted me to say he was running behind schedule. I am reminded of something my friend Mike George said to me a couple of years back when we went on a road trip to Vancouver. "How can we be behind schedule? We're on holiday. There is no schedule." I've learned from that. David and I, in discussing this trip, agreed we would get up in the morning, go where the road took us, and stop when we were tired. This kind of approach is perfect. It allows us to relax, something I reminded David to do. Today is one of those days where we get up late, enjoying our relaxation time, and make a shorter drive of it.

As for myself, I find myself surprisingly relaxed, ready to take thing as they happen. I am convinced that I will do much better on this trip if I follow my agreement with David and the advice from Mike. There is not schedule. I want to go see Adam in Louisiana. We have a week to 10 days to get there. That's about 35 hours of drive time. Surely to goodness we can do 4 to 6 hours a day. That means between 6 or 8 days of road time. If we get close and have doddled too much, there is always a long road day to throw in there. We'll be fine.

Friday, 3 February 2017

Bunged Up

I lost a whole day today. It's a bit scary to think about it, losing a whole day because you are constipated, but that's what happened. I've been plugged up down there for about six days now, an experience I have never had before. Yes, there have been a couple of days here and there, and I thought that was constipation. I have a whole new respect for this condition now that I have experienced it in full hospitalization form.

The whole process actually started last night. When my good friends Anne and Emma came over, along with my daughter Kate, we discussed the possible tools for clearing stools. After much discussion, they decided the stuff I had purchased was the wrong stuff. So Anne went over to Shopper's Drug Mart at the mall across the street and picked up something called Codulax along with a saline enema kit. The pharmacist said take two of the stimulant laxative pills when I went to bed and things should clear out by morning. If not, use the enema.

So this morning things were still bunged up, as my Dad used to say. It was time for the enema. After a real circus with Home Care, another story to be told another day, I finally "self-administered" this thin with help from the Home Care Nurse. Everything else was off the shelf for the day; the only objective was clearing the blockage. Except the enema failed to do it.

Given the situation I did the only thing I could do, the thing everybody involved said I should do but hated saying it. I called 911. The ambulance came and took me to the hospital. Interestingly enough the enema had caused me substantial pressure pain. My body wanted to do what it is designed to do, but the blockage would not move. The result was pain which rose to the morphine level. I got some as soon as I got to the ER at Foothills Hospital.

Then came the long, slow process of fixing me. First it was another enema, this time some sort of industrial strength. Oddly enough I managed to pass a little something just at that moment. I think the idea of another enema scared the shit out of me. Only it was too little, too late. So in went the cleansing fluid. At the same time they had me drink the stuff they give to people getting a colonoscopy, something to clear the stomach and colon completely. However I didn't need the full dose, just enough to get my gut moving.

Except it didn't move. The industrial strength enema did start a bit more action, but far too little. I was still in a lot of pain after an hour or so of waiting for action. At that point the doctor came in to perform the dreaded "manual dis-impaction". I sure you can guess what that involved. Sure enough, in went her finger and out came a lump. It was like unplugging a drain. As soon as that stoppage was out, all the other stuff came out very quickly. Then came another hour wait to see what else might appear. Some did, very little. I think I blew most of it out as soon as the plug was gone.

After that came decision time. Did I feel like I was done? Did I feel like going home? I said yes to both, so with a note about taking Lax-A-Day should this start again and a reminder that the colon cleanser would keep working for a day or two, I got dressed, got a cab, and came home.

Total time elapsed in dealing with this today was 11 hours. In my books that's a full day. I'm beat. I'm sore. I'm tired. But I have yet to pack a single thing or prepare in any way for my departure on our road trip tomorrow. Fortunately I can pack in a few minutes. The other stuff, like doing the last of the laundry and tidying up will take more time. I'll start that as soon as I finish eating my grapes and drinking some water. The doctor recommended both of these actions too.

Thursday, 2 February 2017

No Bears Please

A few weeks ago I fell out of my commode chair and cut my foot. At that time I simply didn't know how I fell. Today I figured it all out, by repeating the process in slow motion without the excitement of murderous looking lacerations under my toes. Yes, I fell out of my commode chair again, by accident, again, only this time it was slow, almost gentle, until the sudden stop at the bottom.

I was unhurt this time, only a bit winded by the stop. So I reviewed what happened this time, as it must have been the same last time. The situation and outcome were almost identical, except for the cuts. I know what it was, or is. When I reach beneath myself to clean up, I have to lean forward. Both of these times I have leaned forward forgetting to hold the safety bar. I then lose my balance, and down I go.

It might seem silly that I forget to use the safety bar. Just remember that I am new to this whole commode chair game, and new to the loss of core muscles. Never before in my life have I had to approach toileting in this manner. The automatic actions are not there for me. I have to think about everything in the process, ensuring I am safe all along the way. Sometimes my mind is on other things. Sometimes I just forget. Like this morning.

Given that I was okay when I hit the floor, I decided to slide myself into the bedroom and lift myself with the sling. The lift was in mid-position. I could reach it from a sitting position on the floor. All that would be required is that I sit up next to the bed, switch the lift on, and lift myself back up again. Only the long drag of my dead weight body from the bathroom to the bed left me so exhausted I couldn't sit myself up. I tried; Lord knows I tried. All to no avail. So I gave up and called 9-1-1, again.

One of the things you need to know about a shock situation like this is your bodily functions tend to stop acting. In other words you don't poo or pee when you are in shock. I was in shock. Until I managed to call 9-1-1, at which point I knew all would be well and I would be safe. The nice 9-1-1 operator was talking to on the phone, asking me to stay on the line until she was sure help was on the way. At that point my bladder said "To hell with it". and began to resume function.

I was stuck on the floor. I couldn't reach my jug. The operator was telling me to stay with her, to stay on the line. I had to do something! So I peed, all over my floor. Now, my floor is not level. It is an old building. Where liquid lands, it does not stay. In this case the natural flow of events was back at my body, all along the side where I was laying on the floor.

So there I was, laying on my bedroom floor, in a pool of my own urine, waiting for EMS to arrive. I had used a towel as a sliding surface as I dragged myself from the bathroom to the bedroom. So I rolled backwards a bit, urine following along on the floor, grabbed the towel and started mopping up. EMS arrived just as I finished. So the pee was gone, but the embarrassment lingered on.

The EMT who walked in my door has been here so often he didn't even buzz. Someone let him in I think, but he knew exactly where to go. He was not even working EMS today; he was working with the police in his private car when he heard the call over the radio. He recognized my address, was close by, so came right on over, beating the ambulance crew by enough time that we just cancelled that call. He looked at me, kind of smiled, and said "I think I've been here about four times now."

He helped me into my sling. As we were doing this, he said "You get weaker every time I see you." I explained that this was the nature of the disease, and that I didn't have a long time to go. I also apologized for being a nuisance to EMS. He assured me it was good, and encouraged me to keep going on my own for as long as I could. It was an interesting conversation, me sitting there nude on my commode chair, re-seated with the help of the sling, and him there in his full police EMS gear, strong, young and fit.

Regardless of all of this, I was back in my commode chair. My floor was mostly wiped up. My body was uninjured. And I am still constipated. Some days you get the bear, some days the bear gets you. I restarted my day; this time I am hoping there are no bears.

Wednesday, 1 February 2017

I've Been Got

A week ago I went to the ALS Clinic. While being inspected by one of the neurologists, I had a sudden cramp in my arm. These cramps happen all the time; I'm used to them. I quickly straightened my arm, and told the doctor I was having a cramp. He asked if I had them very often and I said no. Then he said "You should take Vitamin B6 for that. I will help reduce the cramps."

I have to say, I was all for this. Taking a vitamin to reduce the impact of one of the side effects of ALS seems like a very good idea. After all, vitamins are healty, right? Well that is mostly true, except for the side effects of the Vitamin B Complex tablets, the only way you can get 30 milligrams of vitamin B6 in pill form.

I noticed almost immediately that I was constipated. I did not immediately attribute it to Vitamin B6 or the Vitamin B Complex I was taking. I thought it was a holdover from the antibiotics I had taken for my bladder infection. But now I find myself continuing to struggle with constipation after the antibiotic has long since left my system. So I did some investigation.

It turns out that many Vitamin B6 Complex tablets are known to cause some level of mild constipation. This, in most healthy people, is easily offset by proper diet with lots of fibre and by drinking water, staying hydrated. Note that I said in most healthy people. In addition to my notoriously bad diet from a fibre perspective, and the fact that I prefer wine to water, my body is generally not all that healthy. In fact my core muscles are sufficiently weakened that any extra effort required in pushing out is pretty much beyond me.

So here I am, five days into this particular problem, facing a choice. Do I accept cramps and stop taking the B Complex, or do I get a laxative and see if I can resolve this issue through other means? I've already been drinking a lot of water, eating a lot of prunes, and eating grapes, all of which are supposed to help. Yet nothing has helped so far. For now, I have stopped taking the Vitamin B Complex in a vain hope to eliminate the initial problem.

Something good had better happen soon. I am uncomfortable. I don't like this feeling. I need relief. So I suspect a trip to the drug store is in order today, where I will have to buy one product to offset the issues from another. That's how they get you!