Tuesday, 31 January 2017

Getting Up This Morning

I am, just now, back from seeing my new Family Doctor, picking up some emergency antibiotics in case I get another infection while I am on the road, and doing a bit of grocery shopping. None of this is of any great import; it's just another day in the life. That is, until you factor in ALS. Then even this short list is a major excursion. And I'm planning on yet another outing today, in about an hour, to pick up a GPS/Dashcam unit for my truck so we can have it with us on the road trip.

My new Family Doctor is in the professional building beside the mall, close enough that I can get in almost any time, with ready wheelchair access to his office and the building. This new doctor also knows a lot about ALS, having had a close friend with the illness and having seen it in his practice before me. This is a good thing. Once again, not of great import right now; just another thing in my life.

The thing of real import today was the time it took me to get ready for even this small excursion across the road. It's taking me ever longer to do even the simplest of morning routine things. Today, knowing that I had my appointment at 11:30 AM, I got up at 10:00 AM, plenty of time to get ready and go. My plan was 30 minutes for the bathroom, 30 minutes for dressing, and 30 minutes for coffee and my blog. His office is only 3 minutes from here, so I figured that would work itself out.

What really happened was 30 minutes for the bathroom, 45 minutes for dressing, and 15 minutes for putting on my coat, shoes, hat, gloves, and then making the lift transfer from the wheelchair to the power wheelchair. Oh, and the catheter too; that was in there with the getting dressed. It takes about 10 minutes. I got to the appointment on time. I just didn't get a chance to have my morning coffee or write a blog post.

This is happening more and more to me, where my time estimates are incorrect, simply because I no longer know for sure how long it will take me to do my morning stuff. I take longer on the toilet these days. I take longer to make the transfers. I take longer to dress myself. I take longer to do almost anything and everything. So what was once a quick start to my day has become a long, drawn out, energy consuming marathon.

I have to get used to this. The only thing is that I have to get used to it again, and again, and again; over and over, every single day. Things are changing. What was once my standard has become too little time. So if I have an appointment at 11:30 AM, it looks like I will have to get up at 9:30 AM. In light of all this, I am making a concerted effort to shift my day forward, going to bed earlier at night and getting up earlier in the morning. I hate it, but it looks like I'll have to do it.

Monday, 30 January 2017

Going Rogue

It's Monday, and that means video blog. First of all, is this still a good idea, or are the video blogs boring yet? Second, are they too long, or too short? Third, what would you like to see in my apartment? I can move the camera around if you wish.

This blog, however, is about none of that. It's just a look at the interesting lack of blowback from my post of yesterday. There was a bit, not a lot. And it was mostly respectful and polite. Maybe people aren't all that interested in what I think of things beyond my life with ALS. I don't know.

Sunday, 29 January 2017

Political Commentary

I awoke this morning with a sense of fear and dread, frightened about what the future might hold, how it was going to unfold for me. I awoke with a sense of hopelessness, unable to do anything in the light of such a great struggle. I awoke with a sense of sorrow, a sadness for loss of so much, for the defeat of so much I valued in my life.

I did not wake up thinking about ALS. I woke up thinking about what is happening right now in the USA, that great neighbour to the south, that nation which Canada has called friend since 1867. It has not always been a easy friendship. As all neighbours do, we have had our differences. Yet now those differences seem even greater than ever.

No, this blog is not about ALS, except for some interesting parallel. A great system, a great body, is under attack from within, struggling against a sickness it can barely understand, let along defeat. It is, as we watch it, becoming weaker and more fearful by the day, more isolated, more crippled by it's own constituents. I am not sure if I am talking about my own body, or about America.

Aside from the fact that President Trump took office with 3 million fewer votes than his opponent, aside from the fact the Electoral College was designed to ensure states with large population did not continually dominate those with fewer resident, aside from the fact that there are numerous checks and balances designed to protect Americans from their own government, this swing towards a strong man approach has happened, and it is supported by so many, encouraged by so many, empowered by so many.

America is a nation divided, and, as Abraham Lincoln famously said "A house divided against itself cannot stand." This division is deeply rooted in the changes of the last half century, in the transition from rural to urban, in not only the loss of education but in the triumphalism of the uneducated, in the ever growing gap between rich and poor, in the disempowerment of a people betrayed by a government which has sold out the interests of its voters for self-interest, in the ever increasing detachment of those governing over those being governed.

It is no surprise that every day Americans want their country back again. It has been stolen from them by corporate interests and powerful money. Yet those same interests and money have given a much more succulent target for blame, that gift enabled by a compliant media and failing leadership. Give them a villain, one that is easy to identify, one that clearly is guilty of something even if we don't know what. Create a distraction from those who have stolen the power of the American people, and point the finger at it.

My greatest wish is that we, as people around the world, begin to recognize how our institutions are failing us, how corporate money and power are destroying us one freedom at a time, how any nation and all nations are corrupted by this influence. Just as my friends to the south of me, I want a healthy body, a body which can perform, a body which can live freely and without fear. I want to know why my body is failing me, both my body physical and my body politic. My body has a disease, a disease replicated world wide, a disease where the corruption of the body is so well hidden we have to blame other things. I just wish we could see it clearly, and treat it.

For those of you who agree with President Trump, I simply ask that you focus on more than just this thing thrown before you. As William Goldman, script-writer for the movie "All The Presidents Men", famously wrote "Follow the money". Look at who is enriched by this hatred, this dystopia and disfunction. Who owns the media which sells us our news, true or false? Who has the greatest interest in creating fear and mistrust? Is it we, the governed, or is it those who would manipulate us in their continuing grasp for ever increasing power?

The real tragedy is the truth behind the lie, the truth that makes it all so easy to believe. The enemies of America want to see it destroyed. It is an even greater tragedy that the very people of America are the ones doing the real destruction. The body is destroying itself, muscle by muscle, tissue by tissue, day by day. I need a cure. I need a treatment. I need education. I need understanding. I need peace.

Saturday, 28 January 2017

Travel Gear

I've been having a lazy kind of day, a stay in bed day. It was supposed to be a day where I got up early, where I went out, where I was active. Instead I stayed up late last night, visited with my friend Anne, then watched A Clockwork Orange into the small hours of the morning. I have to get up, though. My friend David is coming in a bit. We are going to discuss and test the gear that I need to take with me on our upcoming road trip.

It used to be just me and a couple of suitcases. Then it became me and my cane, and a couple of suitcases. After that it was me and my wheelchair, and a couple of suitcases. Now it's me, my wheelchair, my commode chair, and a couple of suitcases. However I am thinking about taking my power wheelchair along with a portable lift. I already have the ramp in the back of the truck, and all this stuff will fit.

My need for the wheelchair is obvious. My truck is already well rigged for it; I've done thousands of miles with hand controls. The commode chair is not so obvious. The reality these days is that transfers on and off a toilet are problematic. I don't want to have to ask David to lift me every morning. The commode chair works well, whether at home or in a hotel. It also lets me shower independently, a good thing on a long road trip. All we need is the proper type of room, one with a roll in shower.

The power wheelchair has gone with me a couple of places, the most notable being my brother Jim's property north of Edmonton. I was able to wheel about pretty well in the power chair, except for getting stuck in the sand every now and again. I'm thinking it might be useful on the road so that David doesn't have to push me all over the place in my manual chair. The only issue is loading and unloading it from the truck. That takes practice. Hence today.

The most recent addition to my traveling equipment is the portable lift. I'm not completely sure how it will impact things. It is designed to lift me in an out of my truck, or to be used in any other places where a lift might be in order, perhaps in and out of bed and such. The only problem is I cannot use it independently. It has to have an operator. That means work for David, and I am not sure I like that. On the other hand, it can lift me into the passenger seat of the truck, something David might be in favour of. We'll have to discuss it.

Oh, and I still have a couple of suitcases, plus a couple of transfer boards, plus my wheelchair booster pad, plus, plus, plus. Traveling with me, especially on a road trip, has become quite the adventure, and not all in a good way.

Friday, 27 January 2017

I Forgot!

I can't believe it! I went the whole day today and completely forgot about writing in my blog. It's been that kind of a busy day. It started with Home Care; she came early, I'm glad of that. Then came the AHS Wound Care Nurse to re-bandage my foot. After that my ALS Society Case Worker came to deliver new equipment for me to take on my road trip; we leave in just over a week. Then Anne came with her dog Echo. We went shopping for a whole bunch of stuff.

The biggest acquisition of the day, in terms of both impact and price, were the parts to build a proper booster seat so I can get into my truck on my own. I am raising the seat by a half inch with a new piece of hard foam, along with the existing foam I have already. Plus I am making the booster seat a proper 18" square as opposed to the 18 X 12 which it currently is. This full square will give me better support and lift. I also get a piece of 1/4 inch panel to provide stiffness to all the glued pieces.

Anne and I also went to Costco so I could get some cheese and a couple of new pairs of jeans. I wanted these for when David and I go on the road. I tend to go through a pair of jeans each day. Since we will be gone nearly 21 days, I want to be sure to have enough jeans that I don't have to do laundry every few days. Once a week on the road is plenty.

There were other things on my list, but Kate is here for dinner. We had to get home before she got here. So I still have stuff I want, like some egg poaching cups and a new rolling pin. That means a trip to HomeSense or Home Outfitters. Either way I have something to look forward too.

Tonight we will cut, glue, fit and build my booster seat. I want it ready for tomorrow morning; I'm getting up early to head to Lake Louise for the day. I am beginning to test my road trip gear. Only a week to go.

Thursday, 26 January 2017

Twenty Pounds

I went to the ALS Clinic yesterday. It was the usual things. The neurologist met with me to test me, then tell me that, yes, my arms are getting weaker. This is something I already knew. The respirolgist met with me to tell me that, yes, my breathing was down slightly, not enough to be problematic, but slightly lowered lung capacity. This is something I already knew. We also discussed how my weakened core muscles would make it easier for me to run out of breath. This is something I already knew.

Then they weighed me, and told me something I did not already know. I have lost 20 pounds since last April. This is not a problem they assured me, as I had plenty of reserve left. I was not wasting away to a shadow. There was, however, a false confidence in this. We all know that weight loss for someone with ALS is indicative of decline. I am declining. This is something I already know. They also did not tell me to put on more weight. Apparently 240 pounds is still adequate.

To be honest, I have felt like I am losing weight since about last September, especially muscle mass in my arms and legs. I've had to go down a size in compression socks, and this was in July already, so I have been losing muscle mass in my legs for a while, I just happened to really start seeing and feeling it in the fall.

My belly is still big, but even there I am down a few pounds. There are a few indicators I have for this, not the least of which is that my "outie" is a lot less out than it was this time last year. It's almost back to an "innie". My navel herniated some years back, so it can be either one, as it wishes, depending on the shape of my belly.

Given that muscle weighs substantially more than fat, it would make sense that this twenty pound loss is mostly muscle. Visual indicators say that it is mostly out of my legs. This whole thing, however, is a reminder of why I was told to pack on some pounds at the beginning. Imagine if I had been fit and trim, no extra fat. The loss of twenty pounds would have been more than dramatic. For me, however, it is just an indicator, not a real problem.

Still, I wonder if I should try eating more. I just don't feel like it. The work of cooking has become more than the enjoyment of eating. I have a terrific recipe in my head right now for Eggs Benedict with Avocado. I have all the right stuff. It would provide me with calories. But maybe I really don't need them that much. After all, I have lots of weight on my belly yet to lose.

Wednesday, 25 January 2017

Sort Of On Schedule

This morning was to be a different kind of morning, a morning where I would get up early, get things done before Home Care got here, do my exercises with Home Care, all so I could get to the ALS Clinic by 12:30 PM. The general plan got followed. The details got messy.

I woke up at 8:18 AM; I remember looking at the clock and thinking "What on earth am I doing?" I wanted to get up at 8:30, so this would have to do. I shook myself from sleep to slumber, then spent about 15 minutes building up the energy needed to sit up and go. Once I felt like I could make the move, I slid my legs over the side of the bed, only to find the floor was wet. It was urine. The closing seal on my overnight urine bag had come undone, or perhaps I hadn't sealed it properly the night before. It was leaking; about half the contents were in the bag, the other half were on the floor.

So my first task in getting up was to grab some towels and a mop, and clean up the mess. This took about 15 - 20 minutes. I am pretty sure I got all of it, but there are some spots under the bed I cannot see or reach. When I get home from the clinic later today, I am going to pull out the bed and make sure its is clean under there.

By now it was almost 9:00 AM. I rolled my way into the bathroom and did what I had to do. Things went reasonably well this morning, although I could have waited longer I suppose. I didn't. I rolled into the shower and put the plastic bag over my foot bandage. I then realized that this baggie was not going to hold without tape, and I could not do the taping myself.

Instead I decided that I would simply put my foot up on the shower bench to keep it reasonably dry. I tried that, only to drop my foot just as it got to the edge of the bench, dragging my toes over the edge and banging them down onto the footpad of my commode chair. It was then that I noticed the blood drops inside the foot bag. I had pulled open the cut and it was bleeding, not a lot, just enough. I said "To hell with it" and showered anyways.

After the shower I called the Home Care Wound Nurse to come and redo my dressing. Fortunately she was almost next door and managed to get here within a few minutes. She redid the dressing and had me all cleaned up by 10:10 AM. She also gave me a bit of a lecture and a couple of nasty looks. By 10:30 AM the Home Care Aide was here to do exercises with me, and I was pretty much back on schedule.

It's now 11:27 AM. I've had my coffee and breakfast cereal. I'm about to put on my catheter and bag. After that I will put the booster pad on my wheelchair so I can get in my truck. If all that goes without incident or accident, then I will be on my way by 11:45. Sounds about right to me.

Tuesday, 24 January 2017

Bathroom Battles Again

Today has not been easy, so far. I've spent the last 2 1/2 hours in my commode chair, ready and willing to do the deed. My body says there is a deed to be done. Alas my core muscles are unable to comply. I am having far too much trouble pushing out, bearing down. Things are just not happening in a reasonable manner.

My solution so far has been to sit over the toilet and do what I can, then take a break of say 15 minutes. Then, it's back to the toilet to push a bit more, until I become exhausted. Then it's another 15 minute break. All of this is to produce what I might have produced in a matter of a few minutes in days gone by. It's not that I don't have to go. It's not that I can't go. It falls back to my old mantra of all things ASL; nothing is easy, nothing is fast.

This has implications for my upcoming road trip. I will need longer in the morning to do even a part of what I have to do. In addition I am going to have to eat foods which encourage activity and soften the outcome. That means fewer burgers and fries, a lot more salads, more fruit, especially prunes and grapes. I love both of those, so that won't be a problem. Getting a digestion friendly meal while on a road trip through the dietary catastrophe of the USA is going to be the real challenge.

It's a good thing I am going to the ALS Clinic tomorrow. I am going to seek professional advice on this from people who have seen a great many PALS go through it. We all do at some point. It's so predictable that it is already on my charts for this visit even though I declared otherwise. Unfortunately it is not otherwise. I have to admit my new weakness. It's been building up for a while but now it has reached the critical point. In addition to diet, I will need to take some sort of laxative or stool softener. My body has not failed me completely, but it sure is getting there.

Monday, 23 January 2017

I Can Still Make My Own Bed

I learned something last night. I can still make my own bed. It might take 90 minutes. It may mean using slings and lifts and grabby sticks and my wheelchair, but I can do it from bare mattress to full coverage. This is an example of some of the things I have to be careful about, things I have given up because they are too difficult for me. The reality is that if I plan these things, go about them one step at a time, take breaks in the process, and focus on each step as I do it, I can still do things which I have become convinced were lost to me.

Sunday, 22 January 2017

Everything Else Can Wait

Today should be named after Disney's missing three dwarves; Deary, Bleary, and Weary. The sky outside is a dull, sullen damp grey. It's -5C outside, cold enough to snow, yet is looks like it has been raining. There's this near dry mist in the air, moisture condensing out enough to make everything look damp, yet not enough to snow, at least not so far. There's still time left in the day.

I'm feeling that way myself. I know I should be happy with yesterday, with the wine we bottled, with the dinner we shared. I know I should feel good about the people around me, those who are constantly there to help me. I am happy about the wine. I am happy about the people. I'm just not happy about my life these days, the way it feels to live with ALS, the effort it takes to do something so mundane as get out of bed or go to the toilet.

The ache of the last few days continues with me today. I've been hurting on my left side for about a week. It's not enough to take pain killers; it's not really pain per se. It's a soreness of muscle that is just below the threshold of pain, a kind of low grade hurt that just won't go away. It makes me want to stay in bed, to not move, to lay there doing nothing. When I don't move, nothing hurts. When I move, so does the pain. So I am never sure where it's going to be next, and it is never enough for me to do anything about. It's torture, only much milder.

It seems like I am complaining a lot today. I am. I have a few things to complain about, notwithstanding the great many things I have to be grateful for. I reserve the right to complain now and then, or even regularly. I think I deserve it. Of course part of the complaining I do is my own damned fault.

Take my kitchen, for example. When the gang left last night, all the dishes were done but for a few. The dishwasher was loaded and running. Excess dishes were hand washed and put into the dish rack. It is so nice, so helpful of them to do all this. Yet now, when I look at it, even though Home Care will be tomorrow to take care of everything else, I feel the need, the urge, to empty the dish rack, to empty the dishwasher, to wash the last few dishes, to wipe down the counters, to clean out the sink, to wash the last of the wine bottles. I don't have to do any of this, yet I feel it almost as a weight upon my shoulders.

I think today though, I will do as so many would suggest. I will take it easy. I will watch for the snow. I will eat, at least something. There is no need for me to push myself so hard. There is no need for me to feel I have to do everything. I'll do something for sure; I want to wash the mattress cover from my bed, and remake the badly made bed from Friday, if I can. That's a lofty goal for me today, to get this one thing done. That's all, just this one thing. Everything else can wait.

Saturday, 21 January 2017

Wine Bottling, Sort Of

It's a wine bottling day today. People will start arriving to help in a few minutes, right about the time I post this blog entry. There will end up being about 7 or 8 of us, if you include me. These days I am less and less able to help in this process. The group has been doing it long enough now that they not only don't need my help, but often prefer that I be out of the way so they can get things done.

I get that. In fact I have encouraged that, the functioning of social gatherings like this where I can be less of a participant and more of an observer. I'm getting what I wanted, what I asked for, where my friends can do what I would do, only doing it for me instead of with me. Be careful what you wish for, you might just get it. I know I should be happy, but I am not.

Depressed, that's what I am. Saddened by the reality of my inability to do what I used to do, to be what I used to be. My big contribution for today is location, equipment, and the ribs I am making in the slow cooker. I will do no filtering. I will do no bottling. I will do no cleaning or preparing. All of that is beyond me now. At best I will help putting on labels, but reality dictates that I will need someone doing it with me. I can't keep up.

Happy, that is what I should be. I should be happy that they are coming, and I am. I should be happy that they are helping, and I am. I should be happy that my friends are still willing to be with me in such large numbers and so often, and I am. It's just hard to shake this underlying feeling of loss, of wishing I did not have this disease, of wishing I could still take charge and get the work done.

One of the toughest things I face these days is accepting the ever increasing limits on my ability, the ever diminishing circle of my ability, the persistent decline. Even in something I enjoy so much as making and bottling with, along with the social engagement that goes with it, there is the constant reminder that I have ALS, and it is getting worse day by day.

Friday, 20 January 2017

It Wears Me Out

It's Friday. It must be time for another new Home Care Aide. It seems that the Home Care agency has a real problem providing a consistent care giver for Fridays. Last Friday I just sent the new person off without doing exercises; I had already done my shower on my own while waiting. Today I went through the effort and energy of orienting and training a new person. It wears me out.

The HCA herself has great potential. She's a lovely lady, with a great sense of humour. She doesn't mind the challenges of the job. She seems quite competent and understands the issues I face with ALS. In fact she has a friend in Vancouver who has ALS, so I didn't have to explain it to her at all. And she only mentioned God once in the conversation. It's not that she is a bad caregiver, not at all. It's that the process of orienting and training a new person every week is both tedious and tiring. I wears me out.

With today as her first day on the job, she doesn't know the timing of things, when there are going to be gaps in the process and where she can get other things done while I am busy in the shower or on the toilet. She doesn't know where the dishes go, where the mop is kept, what to do with the dirty towels. She didn't empty the dishwasher, usually the first thing that needs doing in the  kitchen. She hand washed all the dishes in the sink, not bothering to load or use the dishwasher, which remains full of clean dishes. It's not that I expect perfection on the first day; it's that there are too many "first days" lately, with too many new Home Care Aides. It wears me out.

Now that she has gone, I will have to attend to my kitchen, putting away what dishes I can, emptying the dishwasher, clearing the counters, On top of that, I have to do laundry today. It's not part of the HCA work; it's that laundry will come on top of kitchen work. I need to get ready for wine bottling tomorrow, which means clear counters and clean surfaces. I have to do that in addition to putting away dishes. It's going to be a busy day. It wears me out.

Thursday, 19 January 2017

Not Really Housebound

The Chinook is just about over. After warming weather since Saturday, the weather is starting to cool once again. By next Saturday the temperatures will fall below freezing; they will stay that way, near or below freezing, for at least the next couple of weeks. While it won't be the bitter -25C that it has been, it will still be cold enough for the sidewalks to freeze over, for the wheelchair ramps to become blocked and slippery.

I'm going to take advantage of this last day of Chinook. My plan is to go to the Coop to do some shopping. There are a just a couple of things I really need; I could get them from Safeway across the street. However the excursion to Coop will get me out in the fresh air for an hour or so, round trip, giving me a sense of the wide world still out there. Once the cold returns I will be reluctant to travel outside unless I am in my truck.

These kinds of opportunities are important in the winter. It is not unusual for February to become very cold, and for March to have a lot of snow; it is the month with the most snow days in a typical year. That means I could be housebound for several weeks, except for the truck, from now until the end of March when things start to warm up.

Fortunately for me, this year I am headed on a road trip with my friend David, leaving on February 4th. The timing could not be better as the long term forecast as calling for colder than normal temperatures in early February. We are leaving at just the right time. Still, for the next couple of weeks, my warm and cozy apartment will be tough to leave.

It won't be completely up to me. I have a birthday dinner to attend on the 23rd, an ALS Clinic to attend on the 25th, and an appointment with my new Family Doctor on the 31st. The Family Doctor visit is across the street, so no truck will be involved. The other two will require the truck. So I guess I really won't be housebound.

Wednesday, 18 January 2017

I Miss My Kids

I am missing my kids a lot today. This weekend, Mary and family came over to visit Meaghan and family, from Victoria to Abbotsford. They are all staying at their mother's house. I am certain Ricky will be there to visit; his nieces and nephews love to see him. The only one missing will be Kate, as she is here in Calgary working away.

Unfortunately due to my own illnesses and other health issues with people close to Kate, I haven't seen her since before Christmas. It's a month since our last visit. She is coming over tomorrow, so that will be a good. It will be terrific to catch up with her, to find out what her life is like with so much to do these days. Phil has been sick, so she has been spending extra time with his boys, making sure they get the care and parenting they need.

It is good that my children are happy, that they have busy lives with family and friends. This is the way it is meant to be, that you raise your children, teaching them how to live their own lives, without parental interference. It's important that children learn to see themselves separately from their parents, as individuals on their own. It makes me happy to see that my children are independent, strong adults all on their own.

This doesn't mean I can't miss them. I would love to have the various families descend upon my apartment for a few days. Perhaps not all at once; I just don't have the room. The problem, of course, is once again an issue of time and cost. To drive here from Abbotsford is a full day; return is the same. If Meaghan came here, her family would have to go to Lethbridge too, where Lewis' family lives. That means any visit would end up taking at least a week, a week away from from work and routine for kids.

Mary faces much the same challenge, plus the cost of ferry fare from Victoria to Vancouver. That ferry trip may only be a couple of hours, but it has the effect of adding a full day to the drive, especially when they stop over in Abbotsford for other visits along the way. So for her and Albert, it's also a week or more by the time all is said and done. This, of course, assumes Albert can get time off work and is willing to drive through the Rockies with an old car full of kids.

Airplanes, you say? The cost for a family of four to fly from Abbotsford is around $1,500, depending on seat sales and such. It's higher for Mary's clan, as they have to fly from Victoria. When I had the money, I paid for all of them to come here for Christmas one year. I no longer have that money.

So the long and short of is is that I don't see them very often, and usually only if I go there. That's just the way it is. So I miss them. Thank goodness Kate is here to remind me that I am a Dad.

Tuesday, 17 January 2017

Blasted Bladder Bacteria

It's been another day, albeit a short one, of battling the forces which would bring me to a complete halt. This time's it's that blasted bladder bacteria infecting my innards. At least today I made some headway in this battle of the bladder. I drank about 4 litres of water last night, spending much of my night peeing. This seemed to clear up the cloudiness in my urine, at least initially. Then I woke up today and the cloud was back.

Fortunately my work yesterday paid off today. The doctor at the ALS Clinic ordered a urinalysis from the lab across the street. He also faxed in a prescription for Ciprofloxacin, short name Cipro. This is a broad based antibiotic intended to clear away any internal bacterial infection. It's pretty powerful stuff, with some pretty powerful side effects. Let's hope none of those hit me. What struck me about this antibiotic is that it is used against anthrax, and even the plague!

There is one positive side effect of this infection. It has driven me to locate a Family Doctor right across the street in the Market Mall Professional Building. This is a regular doctor I can go and see for regular stuff, like bladder infections, and also for regular prescription renewals, something the ALS clinic doctors are not real good at doing.

The advantage of having a Family Doctor across the street is simple ease of access. Today, for example, I had to go to the same building to deposit my urine sample. It was easy for me to get there by simply getting in my power chair. At the same time I was able to go to Safeway and pick up my prescriptions. This works well for me.

My only real concern is adding a new physician to the list that seems to grow as my illness lengthens. His role will be the general stuff, but he may see himself as the stickhandler for all my medical care. This might not be a bad thing, but I have done well with the doctors in the ALS Clinic when it comes to care. I am sure it will work out well; these people are professionals. I get to find out on January 31st, when I go for my first appointment, a "meet and greet". I'll let you know what happens.

Monday, 16 January 2017

I Need A GP

It's Monday. It's video blog day. This one kind of speaks for itself.

Sunday, 15 January 2017

I'm Hoping

I hate that I cannot generate a decent sneeze or cough. I hate that I have to spend more and more time on the toilet because my "bearing down" muscles are getting weaker and weaker. I hate that I take increasingly more time to do simple things like getting dressed or making coffee. I hate so many parts of my life with ALS, but I really hate it when I go from having terrific company over the weekend to being home alone once again.

They've left. As quickly as they descended, the boys have taken flight and gone home, back to BC, back to their own lives, having taken the time and money to come visit me, to add to my life. I'm already thinking about when I will see them again, how I can plan a trip to Vancouver sometime in March, a trip that would let me visit my children and grandchildren too, along my Mom and Ray. The only thing that keeps me going is this human contact, this interaction with people I love.

Today will have its own difficulties. I have tidying up to do, not much but enough that I want it done. It's silly, since Home Care will be here tomorrow to clean my apartment. Why not just leave it? Because I want it done, and I want to do it. There is laundry to be done, not just guest laundry but more my own. The counters in the kitchen need to be organized. I won't get it all done; I will just enjoy what I can do, and take my time doing it.

There there is this small matter of another UTI. It looks like I have another bladder infection or something like that. I have the symptoms, but interestingly enough this time I have had no fever so far. Still, if you look up the symptoms for male UTI, I have enough of them to make me worry. So it will likely mean another trip to the clinic, or perhaps another trip to the ER. If the UTI is persistent, it will mean another hospital stay.

I'm hoping that doesn't happen. I'm hoping I can beat this UTI with lots of hydration and plenty of rest. I'm hoping, because I want to go on the road with David in a few weeks, and I want to go to Vancouver in March. I'm hoping because I am so tired of hospitals and doctors and ambulances and medics and being poked with needles and inspected by so many people. I'm hoping; that's all I got.

Saturday, 14 January 2017

Chris, Chris, Richard and Peter; CCRaP Meeting

I'm going to try to write. I just said that to Chris as he handed me some of his home made fruitcake, a treat I love to receive from him each year. The other Chris is sitting beside me, chatting on and off about this and that, while Peter sits in the living room watching golf on TV. These men provide me with real intellectual distraction, so it's hard to get my mind off of what's happening around me and into writing my blog.

This is no complaint. In fact it is one of the greatest gifts I can be given these days, the gift of time. Having them here, all in a group, is a call back to our past days of winter sailing, time on board in chill weather, time in small pubs at local ports, late nights of chatter on board ship. Having them here is a memory writ live in time, a recall of better days. Or perhaps these are the better days. Either way, I like having them here.

No, I don't like having them here. I love having them here. Would that I could spend the rest of my days surrounded constantly by such loving and giving men. Would that there were someone with me, someone rounding off the rough edges of so many days and nights. This is what is truly the toughest part of my life these days, that I spend so much time without them, without anyone really. I run this race solo so often. Now, to have companions, this is what I need most.

I will confess to being tired. Yes, I stayed up late. Yes, I drank too much Scotch. Yes, I am going to do it again tonight. That's what we do in these days together. This is our time, a time I will not easily let go. Unfortunately it is a time which will easily let go of me. They must return to their lives, go back to BC, go home to their own families. I have my life here, and I am so grateful when they come to be a part of it, especially now that it is becoming increasingly difficult for me to go see them.

Friday, 13 January 2017


This morning has been a bit of a schmozz, you know, a schmozzle, a chaos and confusion to start my day. It begins with a phone call at 9:00 AM from the AHS Wound Care Nurse telling me she would be here between 11:30 AM and 12:30 AM. Then, 10:00 AM while I am half asleep, I get another call telling me that my HCA for today just called in sick, a half hour before she is scheduled to be at my place. They were trying to find a replacement. The earliest someone would be here would be 11:00 AM. A collision was on its way.

I got myself up at 10:45 AM, fervently hoping for someone to show up at 11:00 AM to help me with my shower, personal care, and exercises. I knew better. I still hoped. Rather than simply take this as it happened, I decided to take matters into my own hands. I got onto my commode chair, did the required pre- and post-shower set of towels, clothing, pills and such. Then I went and did my morning routine as if the HCA was there. It was a bit more difficult; some things are easier when you have help. Nonetheless, I had my shower.

Drying off, particularly in my hard to reach areas, is never easy. This is where the HCA helps. Today, however, my only viable option was to lay on my bed and air dry. I was doing just that when the AHS Wound Care Nurse rang to get into my building. I quickly put on a pair of underwear, or at least as quickly as is possible for me these days. I slapped on a shirt and was just in the process of buttoning it when the nurse walked in the door.

I explained the situation, including my lack of pants. She seemed unconcerned, going about her business with the cuts on my feet. After about 30 minutes, she was done, and just as she was done my front door called again. It was an HCA coming to help me with my shower, the one I had an hour ago. The nurse gathered her stuff up and left.

No sooner than the nurse was gone, the HCA came in. She was completely new to me. This meant she could not do my exercises without a supervisor, and heaven only knew how long that would take. The supervisor thought I was getting a shower and personal care first. So I had her call the supervisor to let her know that I had done with my shower. I decided at that instant to skip exercises too; I just did not feel like being a training exercise for a new HCA once again. I just didn't want to do it.

The HCA asked what she could do. I asked if she would tidy the kitchen, take out the garbage and recycling, and make my bed. Her idea of tidying the kitchen did not include emptying the dishwasher despite my specific request that she do so. The routine here was new for her; I get it. She did take out the garbage and recycling, although she did not replace the recycling bag, That's another task for me.

There is, however, a powerful redeeming and rejoicing point for my day, now that the schmozz of the morning is done. In a couple of hours, they will start arriving. My brother Peter and my two best friends, both Englishmen named Chris, are coming to spend the weekend with me. I will head to the airport to pick up Chris Smith at about 3:30 PM. Then Chris will go get the other Chris and Peter at about 8:30 PM. Then all of us will spend a terrific weekend together; talking, drinking, laughing, telling stories, reminding ourselves that life is still a lot of fun.

I'll take a schmozzle morning for this kind of afternoon, evening, and weekend. For the next hour or two I will get food ready. Then it will be time to get in the truck and start having fun.

Thursday, 12 January 2017

Tired, Replete But Tired

My hands are shaking a bit. So is my whole body. I'm not sure why. I had plenty of rest last night. I've just eaten a pear and some grapes for breakfast, and I am about to have my coffee. I have a hard time explaining this things. Perhaps today I will blame in on exhaustion, even though I slept for 13 hours last night.

The reason I am exhausted is that the last couple of days have been busy ones. On Tuesday, thanks to help from my friend Anne, I went grocery shopping. I got out of my apartment, into my truck, and went to the Co-op. Then Anne visited with me for a while. I got into the Hot Rum Toddy and perhaps stayed up a bit late. So I had a nap yesterday afternoon.

Before that nap, I got into my Power Wheelchair and motored across to Market Mall. My friend Bobbi encouraged me to come out for lunch. She had several things to do, but wanted lunch with me to be one of them. I went, I ate. and then I went to Safeway to pick up a few things which were not available at Co-op. When I got home, the nap hit before I could even put the groceries away. I slept in my power chair for about 2 hours.

After waking up at 7:00 PM, I put the groceries away, after which I went online to spend some time seeing what the rest of my world was up to. I like to read the news online, especially from first line news suppliers like CBC and BBC. Before I knew it, it was 10:00 PM and I was ready for bed again.

It was a good feeling when I went to bed. My fridge is full. My pantry is full. Even my liquor cabinet is full. I have all I need for my guests coming this weekend. I have all I need to feel like I can meet any food or beverage crisis possible. I feel safe, secure, protected in my castle from attack or siege.

Unfortunately the nap caught up with me last night. So I took a Zopiclone. I remember waking up at 3:00 AM to go pee. Then, nothing. Nothing until 2:00 PM today. I woke up, and the first thing I thought was how much I needed to go back to sleep. Those Zopiclones can really work sometimes. Regardless, I got up. But boy am I tired. It's an early night for me tonight.

Wednesday, 11 January 2017

Foot Care Day

Today is a busy day for my feet, in particular for my left foot. While this morning had its normal routine of shower and compression socks, since then the Wound Care Nurse was here to change the dressing on my left foot, and shortly the Foot Care Nurse. He will trim my toe nails, help attack the toe nail fungus which is now well established on my feet, and take a look at the skin quality on my feet, top and bottom, to see if there is anything we can do to make them less gross.

This means that three different health care professionals will be visiting me today, three different people focused on three different things for my body. The Home Care Aide focuses on my general health and well being, especially helping with my shower and Range of Motion exercises. The Wound Care Nurse is looking after the cuts on my feet from my fall last week. The Foot Care Nurse is looking after the general care of my feet and toenails.

Coordinating all these different care givers can be a challenge. For example, the Wound Nurse has to come after I have had my shower and exercises. There is no point in her coming while I am in the shower or being cared for by the HCA. After my exercises is a good time. Then the Foot Care Nurse has to come as well, except that the wound covering for my feet covers my toenails, so it would be best if the Foot Care Nurse was here at around the same time as the Wound Care Nurse. That doesn't happen, so my left foot is not getting a lot of general attention right now.

The dressing has been put on to leave the toenails free on my larger three toes, but the two small toes are completely covered and inaccessible. That means the Foot Care Nurse will have to either relieve the bandages slightly and put them back when he is done, or he will have to just ignore the smaller toes on my left foot for a few weeks.

All of this for a simple toenail trim and bandages on a cut. It's a complicated business when you get to this stage, where you need multiple specialists to take care of your failing body. I suppose it is better than being in hospital though. At least at home I get my own food, sleep in my own bed, change my own catheter, and don't need 24 hour nursing attention. It saves money for the health care system, and keeps me independent.

Tuesday, 10 January 2017

Defy The Odds, And Live With ALS

To live with ALS, to live with it and not give into it, requires a great deal of will power, self-determination, and, on a regular basis, defiance. I think of Lt. Dan in Forrest Gump, climbing the mast with half his legs, screaming at God into the face of the hurricane, defiant unto death with his situation. I also think of Forrest saying that Lt. Dan "made his peace with God" after that. There is a certain truth in all of this, that defiance against all odds can bring you peace, that living a self-determined life takes will power.

Today I am going to engage in an act of will power, of defiance. I am going shopping, with or without someone to help me. I am going to go downstairs and get in my truck. I am going to drive to the Co-op grocery store just a few minutes away. I will get out of my truck, into my wheelchair, on that snowy parking lot. I will go into that store, and go shopping.

This might not seem all that defiant, yet it really is. The weather outside is frigid, -20C, around zero Fahrenheit. There is plenty of snow on the ground, perhaps 5 - 10 cm, aka 2 - 4 inches. That may not seem like much, but it will certainly challenge a wheelchair. It's becoming increasingly difficult for me to get into and out of my truck on my own. Yet I will face all these challenges, defy all these difficulties, and go do what I want to do.

I have a plan. I have an approach to minimize some of these risks. My biggest challenge, the thing I need to use all my willpower to face, is the fear. I do not have to be courageous; all I have to do is face my fears and do it anyways. That's what I am going to do. I will defy the storm. I will determine for myself what I will do, and I will do it. Then, when I am done, I will find a way to get home, to get these groceries unloaded and up to my apartment, and to rest. By then I'm gonna need it.

Monday, 9 January 2017

No Drama, Please

It's Monday, video blog day! I want to apologize right up front for the very poor sound quality of the first 30 seconds. I was off to the side so I could show the snow and cold outside my apartment. The long and short of that segment is that I have been trapped in my apartment for more than a week, unable to get out to do my shopping. I did get out with Katherine last Thursday, and I did get an ambulance ride to the hospital last Wednesday. but neither of those trips got me into a grocery store.

It's all very dramatic, my life these days. Weakness, short of breath, hospital visits, so much more. I just don't need any more drama in my life. So here is my video view, bad sound and all.

Sunday, 8 January 2017

A Bad Night.

I sat on my bed this morning, putting on my compression socks. The right foot went on, no problem. The left foot, always the left, gave me some trouble. So I pulled extra hard at the folds in my compression sock to get it over the heel. That's when it happened. My fingers let go of the sock, snapping back at me. I managed to punch myself in the balls, and then, having lost my balance, I fell over backwards on my bed. My life is a Three Stooges skit.

Actually it was the perfect denouement for what had been a very rough night, a rough night starting about an hour before I went to bed. It was then that I saw some lovely pictures my daughter had posted on Facebook, pictures of my children and their children all gathered for a photo shoot to celebrate my ex-wife's 60th birthday. It broke my heart. Why was there no special gathering of children for my 60th birthday? I know why. It costs too much for them to come to Calgary.

There I was, looking at these beautiful pictures with happy children, grandchildren and ex-wife. It was then I started to ask myself why I was being punished and she was being rewarded. Had I done something so wrong, to leave her after so many years of unhappiness? Then it really started, the self-doubt, the self-recriminations. I began to look at my choices financially, personally, socially. I wonder if I've done the right thing, if I've made the right decisions.

That's part of the problem with living with ALS. I used to say there were no decisions in life which you could not fix if you made a mistake, except suicide. I still think this is true, but I have reached a point with ALS where fixing bad decisions is pretty much impossible. I simply don't have the time to change course, to correct. My days are numbered. Each day is becoming shorter, with less and less ability on my part to do much within these shortened days.

I spiraled down from there. I began to tear myself up inside, regretting what I have left behind, what I lost along the way, feeling anger that I got this deal, that it is such a terrible way to live and die. Even within this context I chastised myself for these feelings. I'm being self-indulgent, that with this disease I still have a pretty good life. I shouldn't complain. Self-pity is for losers. Here I am though, struggling with ever deepening sadness over what could have been, what I was supposed to have, what I should have done.

This is the saddest part of my existence, the eternal self-doubt, that perpetual feeling that other people would have made smarter decisions, that someone else would have made better choices. I can't shake the feeling that I am doing this wrong, that every day I wake up and make more mistakes, more bad decisions.

Of course at the root of all of this is my internal assumption, something that I cannot seem to shake, that I got ALS because of something, because of something I did. Intellectually I realize this is not true; emotionally I have to make some sort of causation. I feel like somehow I have done this to myself, or perhaps God has done this to me, as some sort of punishment for sin, some form of payback for bad choices.

I know this is silly. If there is a God, he or she doesn't work this way as far as I can see. Bad things happen to good people all the time. Good things happen to bad people all the time. There is no rhyme nor reason. I know there is no reason I got ALS and someone else didn't. I know this is just bad luck. Still, I cannot get rid of the feeling that somehow this is my fault, that somehow I am a failure, that this is happening to me just for that reason, that failure as a person. I just can't seem to let go of this self-condemnation.

I didn't sleep well last night. These thoughts haunted me, both in my waking and in my sleeping. My dreams simply amplified my waking thoughts. Morning came. The sadness had left me. So I decided to start my day by punching myself in the balls. After all, one good turn deserves another.

Saturday, 7 January 2017

Renewal For A Year

This morning I was sitting on my bed putting on my jeans. It's something I do almost every day; the odd day I go without pants. In order to put my left leg into my jeans, I lifted my foot by grabbing my compression sock at the top and pulling. Once I got my leg up onto the bed, my centre of gravity had shifted and I tipped over backwards. No harm, no foul. I was on the bed. I just sat back up and started over.

It's not a big thing, just another reminder of the loss of core muscles I have experienced, never mind that I have lost all muscle tone from basically my waist down. It's these little things, though, which can make you really tired of this horrible disease, the small changes, the incessant changes. I have to be careful not to let them dominate my life.

In that spirit, I did something yesterday which I think is, if not brave, at least defiant in the face of the terrible odds I have to deal with this year. I am in my fifth year post diagnosis, a marker by which 80% of people diagnosed at the same time as me will have died. I am growing steadily weaker. My world is decreasing in size and scope almost daily. So I did something to declare that I will not go quietly into that good night.

I renewed the insurance on my truck for a year. I also renewed my home insurance for a year. A full year.

This might not seem like much to normal people. We do it all the time. I, on the other hand, have to contemplate whether or not I will still be able to drive in as little as 6 months, let alone a year. I have to wonder if I will even be alive in a year. It's no big deal for most people; they are not compelled by illness to think that way. The money is a big deal, $1048 for my truck insurance and $308 for my home insurance. If I find I cannot drive or if I die, my insurance can be cancelled and whatever money remains will be refunded.

The statement is not about the money. The statement is all about renewing for a full year. It says something about my approach, my view on things. Yes, I am likely to die soon. No, I will not stop saying "Fuck You" to this illness. It's hard to keep living with ALS. That's the very reason I renewed for a year. I might not make it, but it gives me a goal, a target. It says that somewhere in my deep being, I still believe that I will be here in a year, still living, still going.

Friday, 6 January 2017

Passports And Adventures

Yesterday was a busy day. I finally managed to get out notwithstanding snow, ice, bad roads, and illness. Katherine and I went to the passport office to submit my application for my renewal. Then we went to Willow Park Wines and Spirits, a store which I have wanted to visit for some time. It wasn't as good as my own favourite liquor store here in Calgary, Crowfoot Liquors. After that we went to see the new Star Wars movie, Rogue One, and finally ended up in Chapters where I picked up a couple of books to read.

It was the passport which was the most significant thing from yesterday. They punched holes in my old passport and returned it to me. This morning I picked it up and perused it, looking at the stamps from various places I have had the good fortune to visit. I walked through the pages, while in my mind I walked through some of the wonderful adventures I have had in my life, both before and after ALS. Before ALS, it was mostly work. After ALS, it was all adventure, that one last great travel.

That's one of the things which struck me. There are a great many stamps from London, Frankfurt, the UAE, all before November 22, 2012. Then, after that inauspicious date, there are but a few. Yet those few, the ones from traveling to Europe, traveling to Cuba, and even one from the US, all mean a great deal to me. These were very special voyages, take after my diagnosis, taken as my "last trips". I look on those with such fondness, even more fondness than my many adventures before ALS. After my diagnosis, each voyage, each adventure, has taken on special meaning, to be savoured all the more because of the poignancy of circumstance.

I will travel yet again. I will have more adventures. My friend David is taking me on a three week road trip starting in early February. Katherine and I are trying to arrange another adventure, this time a cruise. Yet still, it is the trips in the past I dwell on, the nostalgia of things done when I knew I might not do them again. There are stamps in my passport which will not be repeated. There are new stamps to collect, and I am going to do my damnedness to collect them. Not all adventure lies in the past.

Thursday, 5 January 2017

Nursing Experience

Talk about a complete waste of a day. That was my day yesterday. I spent it all dealing with the Alberta Health Care Services nurse, the Foothills Medical Centre Emergency Ward, and various ambulance drivers and EMT's. As for myself, the only good part of the day came at the end, when Katherine made my favourite Won Ton Noodle Soup for me.

The day started normally, with my Home Care Aide coming to help me with my shower and exercises. We covered up the bandages on my left foot, and I came out of the shower nice and clean. After dressing, we went to my exercises, where I discovered that I had hurt more than just my left foot in the fall from my commode chair. Nonetheless, we complete our work just in time for the AHS Home Care Nurse to arrive.

The nurse was young, probably in her mid-20's or so. Clearly she was well education in her profession, but I suspect she needs a bit more real life experience. The first thing she did was unwrap my wound to inspect it. Then she washed it out, cleaning out the old blood, pushing gauze deep into the cut to clear it, producing more blood in the process. At this point she said to me "This cut is very deep. You need to go the the hospital and have it stitched."

I know my own body. I know a thing or two about damaging my body, how it recovers, what I need. I also know that putting stitches in a cut which is more than 4 hours old is a truly problematic issue, especially when the cut is narrow and deep. The only reason it was bleeding is because she was poking at it. I knew I didn't need, nor would I get, stitches from the hospital.

She was insistent. Being the easy going, compliant fellow that I am, after a few moments of discussion I said "You're the expert. What should I do?" She said "Call EMS. Have them take you to ER and get stitches." So I complied. I did just that, called 911, arranged transport, went to the ER.

I sat there for almost five hours. I was admitted quickly, and moved into the ER quickly. The wait was simply due to the absolute lack of urgency in my situation. They did take x-rays to rule out any broken bones; there were none. The nurse cleaned the wound so the doctor could get a good look at it. The doctor, after four and half hours, came in, looked at the wound, and said "Stitches won't help you much. They would improve healing time, and would make the scar look better, but who looks at the bottom of your feet? The real problem is that if we put in stitches, we are likely to enclose any bacteria that are in there, substantially increasing the possibility of infection. So we can go either way on this. The risk of infection is about the same if we stitch or not. What do you think?"

I replied in two short words. "No stitches." The conversation ended other than a few pleasantries. The nurse rebandaged my wound. I had had the common sense to bring my own wheelchair this trip, so the nurse arranged a wheelchair cab. I got home  at 7:00 PM. What had been a 30 minute effort to change a dressing had become a full day of wait to do nothing.

It's frustrating. Doctors and nurses with experience learn to listen to their patient, seeking to find what the patient knows about his or her condition, responding with minimal impact whenever possible. This is a lesson that young nurse needs to learn, to do the least amount possible for the most amount of gain. And don't send people for stitches if the wound is more than a day old. Just watch for infection, and keep it clean.

Wednesday, 4 January 2017

Waiting Out The Pain

You know how they say that you feel the muscle pain from a fall more on the second or third day, rather than right away.  I can attest to the veracity of that statement. Today I hurt even more than I did yesterday; on Monday I felt almost no muscle pain at all. What makes it worse today is this is the first attempt at my Range of Motion exercises since the fall. Trust me, the range hurts.

I do my own arm exercises still. It was easy to notice that my left arm hurt more than it usually does. My left arm, my left side in general, is failing faster than my right. The muscles in my left arm definitely got a pull as I fell forward of the commode chair. They most likely, along with my right arm, were out in front of my trying to slow the fall, or frantically grabbing at thin air looking for a safety bar. Alas, none were to be found.

My left knee seems to have taken a real beating too. The pain as we bent that knee today was enough to make me cry out loud. There would be more of this; my knee was just the first part. There are a couple of exercises which really stretch the knee. When we did the first one my cry of pain actually frightened the HCA enough that she stopped right there. We adjusted, eased the exercise, and moved on.

While there was consistent pain in my knee on the left, the real surprise was my right foot. When we went to do the foot stretches, usually one of my favourite exercises, the pain in my right foot was enough that I called them off. We did a minimal stretch on my right foot. Oddly enough, my left foot, the one with the cuts, had almost no muscle pain. It's as if the fall did enough in cutting my foot.

Then there are the back muscles. My back muscles on my right hand side are the ones which took a real beating in the fall. If you can imaging a slow crumple forward from a chair, with a slow tilt towards the left hand side, the side where my foot was stuck on the foot pad, you can imagine how the back muscles would stretch and pull as I fell. They don't hurt a lot, just enough to remind me that they were involved too.

All in all, it's kind of odd to think that my worst pain is in my right foot. It almost makes me wonder if I didn't break something in it again. I'm in no hurry to find out. I know what the doctors will do; nothing. There is almost nothing you can do with the small bones in the foot, and since my feet don't move, I really don't need a cast. I'm just going to have to live with the pain and wait it out. I'm good at that. I do a lot of that these days.

Tuesday, 3 January 2017

The Morning After

It's not Monday but I am posting a video blog today. I'm struggling with the aftermath of the fall from my commode chair yesterday. My back hurts and I feel especially weak right now. This is also still from my cold. Overall, today looks like a tough day. So video works for me today.

Monday, 2 January 2017

I Am A Bleeder

I'm a bleeder. I didn't used to be his way. Before atherosclerosis, before ALS, before heart attacks, before DVT, before the last 10 years, I had very clotty blood. Often if I cut myself, simply rinsing the cut and patting it down was sufficient. These days when I cut myself even the smallest cut bleeds like a sliced main artery. I cut myself this morning.

This was not a simple slice of the knife. No, this was a performance. I awoke at 8:20 AM with a growling pain in my lower stomach, one of those gas bubbles which is really telling you to use the toilet, now. Knowing the potential cost of waiting, I got up early, dozy, unstable. I transferred to my commode chair and made my way to the bathroom. I positioned myself over the toilet and took off my underwear.

I dropped them, right in front of me. So I leaned over a bit, grabbing at the handrail of the commode chair, in an effort to pick them up. This is the moment I noticed that the handrail was in the raised position, leaving me to grab at nothing but thin air. My forward lean continued unabated until I tumbled out of the commode chair and onto the bathroom tile. At first I thought I was fine. Then I got a look at my left foot. I was bleeding, lots of bleeding. Enough bleeding that my HCA, when she got here, said it looked like a murder scene. I have pictures to prove it.

There was little I could do at this point. I was on the floor, bleeding, in the bathroom. So I gathered up my strength, still weakened from my cold, and slid myself slowly into the bedroom. I managed to sit myself up against my bedframe where I could put myself into my sling. This was not all one smooth maneuver; I rested first at the bathroom door, then at the bedroom door, then against my bed. Once I had enough strength, I put on my sling and lifted myself onto my bed.

The blood trail was impressive, once again leading to comments of a scene out of Psycho or some other slasher movie. I waited for my Home Care Aide to arrive. When she did, her first suggestion was that we call EMS to bandage it. We called. They came. Bandages were applied. Then my HCA got to work with the mop, cleaning up this scene from a B movie.

Alas this is not quite the end of the story. A few hours later I needed once again to go to the toilet. I had not been successful earlier in the day. So I swung my feet off the bed to transfer into my commode chair. The bleeding started again, not so bad as before, just a drop here and there. So off I went to do my duty. Katherine was here by now, and she started the clean up.

After transferring onto the bed, she wanted to clean the blood off of my foot. No problem, except she removed all the bandaging which the folks from EMS had carefully applied. I have no replacements for this bandage, so Katherine thought a paper towel would do. After some vibrant discussion about how this was a very bad idea, I called my friend Anne to come and play first aid nurse. She is on her way now, with gauze pads, gauze tape, and hospital tape.

Anne will tape me up, but I am likely to be stuck here in bed at least until tomorrow. I need to keep this foot elevated. After all, I am a bleeder these days.

Sunday, 1 January 2017

Not So Happy New Year

Happy New Year. Humph. Not really. I see very little to be happy about simply because the calendar has turned over another number.

I lay in bed most of today, trying to give my body a chance to recover from this stupid cold. I lay there, not quite depressed but certainly unmotivated, uninterested in getting up or doing anything. Even my body's persistent call to the bathroom went unheeded; the jug worked just fine, other things could wait. I slept, I read New Year's messages on my phone. Eventually I got up.

This time of year is always bad for me. It has more to do with the winter, with the darkness, than anything else. I can remember years ago lamenting the fact that I got up in darkness to go to work, spent the whole day indoors working under artificial light, then drove home in the darkness. This is the time of Seasonal Affective Disorder.

Now add to that the impact of ALS. This will not be a happy year for me. This will be a very difficult year, if not my last year, as I deal with the continuing losses in my arms, shoulders, hands, and general upper body. Losing my legs was difficult. Losing my upper body will be awful. That is what this year will bring.

This year will likely be the last year I drive my truck, dress myself unassisted, do my own shopping, prepare my own meals. This year will likely see my last major road trips, my last great adventures. I will, by the end of this year, lost most of my ability to do something as simple as lift a glass of wine or pour a cup of coffee.

I know there are those who will say I should be happy to be alive. I'm not so sure I agree. Living longer does not mean living better. There are those who say there are plenty of things to be happy about in my life, and they are right. That, however, has nothing to do with a new year.

I see nothing in the turning of the day, in the celebration of another 365 days of successful, stable orbit around the sun yet to come. I see a rough, hard, difficult year ahead of me. So tell me again why I should be happy about that?