Just My Daily Gratitude Notice

I just got back from the doctor's office. Yes, I have another low grade bladder infection. These are so routine that I'm getting antibiotics in advance, just in case. Ultimately I will go on a persistent antibioutic schedule with low dosages. I'm not sure yet what this will do to the rest of my body; I'm fairly sure it will stop the infections though.

The other item on the agenda was my shoulders. Toimorrow I will get my first cortisone shot. I'm told by other patients that it should work fairly quickly to reduce the constant pain I am in. I'm also told that it will wear off, most likely in about 90 days, and I will have to have another shot. In other words, another chronic medication. There's that word again; chronic.

On the upside, other than these few minor health issues, I seem to be doing okay. I get tired easily, as is always the case. I'm obese, a good thing for someone with ALS. I didn't have any blood tests or heart tests; they do all that every time I'm in the hospital, so none of that stuff is necessary with my GP.

Thanks to the geneoristy of family and friends, I continue to eat well, if not completely properly. My appetite is truly sporadic; on one day, off the next. Yet I have no fears about the contents of my fridge. I have the food that I need. Thanks to my friend Moe, I have Scotch on the shelf. My bar is dry in a few other areas, but perhaps that is a good thing. I really don't need that big investment in liquor which is predominantly for others. I have what I want for myself. That's what really counts right now. If I could afford more, I would do it. But these days it is less about affording alcohol and more about saving for, and subsidizing, my home care.

This is not to say that I have lots of money. I still depend on what my family and friends give to me, either directly or through the DONATE button at the top of my blog. It is these combinations of steady, realiable support with the odd unexpected bonus gift that keep my head above water. None of this is easy, either financially, emotionally, or physically. It would be nice if I felt secure in at least one of these areas. For now I will appreciate what I have, and what I can do with what I have.

Things will change soon. They always do. That's why I try so hard to be grateful for what I have, for what I am given, and for the people around me.

Should I Get Married?

I am having a very bad day today, from a simple physical perspective. I hurt. My arms hurt so bad it felt like a heart attack, except I know the difference. The pain has been radiating down my arm into my wrist. Overall, my body is suffering from a general exhaustion. After getting up to eat a nutritionally void breakfast of packaged cereal, I rolled over to the window with my coffee, lay back, rested, and completely forgot to drink that coffee. Most of it went into the sink.

The afternoon is already proving to be better. I've had some water to drink, eaten a few of the cookies Meaghan left for me. done a few tidy up chores, putt some of the detritus from the lasr few days back where it belongs. The painkillers have cut in quickly this time; my shoulder is already down from screaming to a mere whimper.

There has been one very interesting thing happen today, one which I have been expecting for some time. One which arrived this morning. First of all, it's important to understand that the vase majority of the care givers in this country are first generation immigrants, some so new they barely speak English. They have an English comprehension test in order to get into their Health Care Aide training program; the results demonstrate to me that it must be an incredibly simple test. Most of them struggle with the most basic of phrases.

One of my HCA's is from Cameroon, where French is the primary language. She entered Canada through Quebec about five years ago. This was a time when immigration rules for peoiple entering Quebec were primarly swept aside if they were French speaking. It lead to a flood of immigrants from a great many ex-French colonies. Unfortunately many of them have found that discrimination and cultural challenges have made Quebec their entry point, but not their home. They've moved  around the country, learning English as they go.

My Cameroonian HCA asked me this morning if I knew someone who might help arrange a "false marriage" for her sister, who, apparently, still lives in Cameroon but wants to come to Canada. Her sister would come to Canada,. "fall in love", return to Cameroon with her fiance for the marriage, then apply to immigrate to Canada. I am not sure if this is the correct process; I know nothing of this kind of thing.

I did learn that there might be money involved, from the sister to the intended. I also learned that it would be nice if it became a "real marriage". I suggested I wouldl not be a good candidate; my expected life span is too short. She said she wasn't asking if I would do it, only that if I knew someone. I said no. That was that.

What do I do now? Mostly nothing. Asking me about someone to do an arranged marriage is not a crime. Arranged marriages with spouses in other countries is so common as to be seen as a standard process. The "false marriage" is merely confusion in translation. She really did mean arranged marriage, speaking extensively about the need to find someone who could do the arrangement.

But it was an interesting conversation.

Grandchildren

I reap the whirlwind which I have sown, the thunder of mountain streem overflowing with spring runoff, the cacaphony of seagulls fighting over scraps be they at the seashore or at the dump, the screaming of overworked engines at a NASCAR race. My grandchildren have been and conquered, laying waste to the tidy landscape of my small apartment, leaving behind small bits of Lego, parrts of other toys, colouring books, crayons, food scraps. They came in with the whirlwind; now they are gone.

Just abruptly as they came in, they have left. Meaghan and Lewis shepherding Charlotte and Orson down to their car, into their carseats, on the road again. The quiet is immense. That raging mountain torrent turned to a trickle, that cacaphony of gulls satiated and silent, those screaming engince quieted at the end of the race. The silence is immense, near engulfing. All I have is the odd rush of a car going by on the street below. I need to turn on Paw Patrol, loud. I need to search the floor for bits and pieces, be they toys or food snacks.

Now I have to wait three long days while they visit thier other grandparents down in Lethbridge. Then once again my small apartment will bear the brunt of Ninjango or whatever else they can find on Netflix. Once again we will scramble into the van and go on an adventure. Once again little mouths will refuse to eat what I have cooked, wanting instead the familiar foods from Mom. They will be here Tuesday evening and Wednesday, departing Thursday once again to the coast, home.

I love it when they visit. I am disappointed when they leave. Sure, the presence of small children in my home can be challenging, especially when I have to explain why I have a bag filled with pee attached to my bed, or why I can't pick them up and put them on my lap like I did last year. Yet all these, and many more questions can be given simple answers. I have a bag because that's how I go pee now. I can't pick them up because I'm not as strong as I was last year.

With any luck I will see them this summer, for my daughter Kate's wedding party. I will likely be less able to pick them up, less able to do anything. But that doesn't mean I can't enjoy them, can't smile at their antics and wonder at their energy. Grandchildren are like that.

Bed, No Bed

Bad news today. The government agency I work with for essential income and supplies, the Alberta Assured Income for the Severely Handicapped, turned down my request for an adjustable bed. Their recommendation was that I get a standard hospital bed, either from another arm of government known as Alberta Aids to Daily Living, or through the ALS Society.

My challenge is that most hospital beds are 36" wide. That might seem like a lot, yet it is the width of a standard single bed. Even that is an increase from the older standard of 27". How anybody could sleep on a mattress that small is beyond me. In addition, the standard bed is 74" long, meaning for anyone who is 6' tall, there is a mere 2" for wiggle room. That's why my feet were often over the end of the bed when I was in hospital. They make a single XL, also known as a Twin XL, that is 80" long. So you can get long and skinny if you want.

A Double bed, the one favoured by newlyweds, is now referred to as a Full bed. It is 53" wide, yet perversely, only 75" long. Once again, if you are 6' tall or more, your feet dangle and your head bumps. That may not be an issue when you are young and active, but for me that shortness is a real problem. If my feet get over the end of the bed, I'm stuck with that for the night. There is nobody here at home to help adjust me at night.

A Queen sized bed, seemingly a luxury item, it the first bed where the standard length is 80". It is what many of us have at home. It is what I have right now. It is both long enough, and a 53", wide enough for me to fit nicely, allowing me to roll on my side without assistance. That's a big deal to me, but apparently I did not sell that well enough to the AISH upper management.

The truth is that most people in need of this kind of a bed will take a hospital bed; most of them are not limited by the width or length. Nor do they struggle with the limitations of a partial paralysis. When I do finally reach full paralysis, perhaps this won't matter so much to me. Until then, I would like to at least enjoy some degree of comfort in the place where I spend 12 of my 24 hours  each day.

I have access to a used adjustable bed. The seller wants $1,000 but says she is open to offers. The bed, mattress, headboard and sheet sets are a couple of years old. It hasn't been used since last September and is in storage as far as I know. Unfortunately I am not in  position to go check this bed out; I might ask one of my friends to do that for me. Then I can see how low the price will go. One of my friends recently gave me a fairly generous gift. Perhaps this is  the right place to go with it.

Looking Out, Looking In

I don't like to write negative stuff. It seems like I am denying that life has its moments, that not everything in my world is a negative. It's true though, that there are some bad things going on all the time in my life, even on my best of days. This morning the sky is that white sprinkled blue that you can only get in a prairie sky. It's warm, so warm that my windows are wide open so I can feel the breeze, so warm that I am thinking I should get my big fan out to cool this place down. These are all good things. They are also all things external to my body.

If I turn that glance inwards, selfishly focusing on me, the picture is not quite so pleasant. I awoke this morning to pain in my arms and shoulders. Not minor pain; enough pain such that I wondered how quickly I could get some T3's with Codeine in me. That pain has barely lessened with the drugs in my system. It's still making me unwiling to move my arms or shoulders.

The report on the ultrasound and x-rays from the other day should be at my doctors office today. Is soon as I am done with this blog post, I plan on calling his office to see how quickly I can get into to see him. Not only am I concerned about the pain I go through, I am also concerned that I may be on the verge of yet another bladder infection. It's a chronic issue for me. I know I will be back on antibiotics shortly. That's just the way it is.

Perhaps it is just better for me to look outside, to meditate on the spring soon to arrive, its harbingers all about. If I focus elsewhere, the pain becomes more manageable. If I focus elsewhere, I can see good things, both in the world and in my life. If I focus elsewhere, I think a lot less about living with ALS and a lot more about life in general. Looking inward is not a good thing if all you see is darkness. I would rather listen to the birds, feel the breeze, smell the fresh air. Looking outwards is best on days like today.

Alone In The Storm

I feel very isolated, very alone much of the time. The only real break from this feeling is when people come to visit, when someone walks through my front door to day hello. I'm not sure why I feel this way so much. I have my phone. I have text messages. I have Facebook. I have Facebook messages. I have e-mail. Yet with all this technology, I am alone.

Part of it has to be the inhumanity of technological communication. The art of conversation is lost in all this clicking and clacking of keys. The warmth of human touch, the messages of body language; none of this comes through, be it over the phone or through the computers. Emojis are a poor attempt at communicating feeling; they don't, they are just another bit of technological clutter on the screen. In the end, even a computer visual contact, such as Skype, lacks the sense of reality inherent in a human visit.

Another part has to be the disease itself, with the many limitations it places on me these days. I can't get out as much, or as easily, as I once did. Therefore I cannot drive this human contact process. It's exhausting, tiring, for me to even go to a movie, let alone to a loud social event. One day out is equal to two days of recovery. So I just stay home, hoping, passively, that someone comes a'calling.

Finally, I think the nature of this illness drives this sense of aloneness, the inability to grasp it in its entirity, the way people who are not PALS can only understand ALS in bits and pieces. There are so many elements within the body impacted by this disease that once you get a handle on one of them, another pops up and steals the focus. That has to be hard for anyone, even PALS, to deal with.

Perhaps the worst thing of all is when a PALS loses his or her ability to speak. Then they are stuck with eye-gaze or other text to speach solutions. Steven Hawkings "voice" became famous, but it was not his voice at all. Voice banking makes a difference by allowing technologically derived speach to be delivered in the original voice. Yet even so, it is not you, it is not your real voice. It is a pale, lonely imitation of what you once might have been, now gone, lost in the storm of ALS.

Pain And Exhaustion

I wonder how long I can keep it up, this facade of courage and humour in the face of ALS. There is no other way to put it; this is a horrible disease, I am suffering greatly. Sure, I don't have it as bad as some, yet the other day I found myself wishing I was my neighbour lady down the hall. She has terminal and inoperable lung cancer. She is declining quickly. She will die within a matter of days or weeks. Her suffering will end soon. Mine will not.

It is not just the pain I am going through each day. It is the weakness, the exhaustion, the loss of ability, the indignity of care. There are so many things, both physical and psychological that make living with ALS indecent, something I dearly wish would come to an end, yet am too much of a coward to end it myself. I did not cancel MAID plans so much because I wanted to live yet; it was more because I am afraid of dying. I don't want to die; I don't want to live like this.

Today I went for x-rays and ultrasounds on both shoulders. There is nothing holding your shoulder in place but the muscles and tendons surrounding it. My muscles are very weak, so the shoulder joint is quite literally separating on my each time I use it, especially on the left side, with the right side quickly catching up. Imagine the pain of dislocating your shoulder joint every time you moved it. I'm living on T-3's with codeine these days and asking for something stronger.

This activity, this simple hour of sitting, moving slightly, waiting for pictures to be taken, left me so tired I had to come home to have a two hour nap. Even so I am still tired; I could still sleep, perhaps from now right through until tomorrow. I have done it before. I might even ask my caregiver to put me to bed when she gets here at 6:00 PM.

How tired am I? So tired I don't want to eat the steak I have on the stove, let alone cook it. So tired I don't want to make the Shrimp Ceasar Salad for which I have safe, e-coli free supplies in the fridge. So tired I don't have the energy to even cry, let alone raise myself to feel distress. My brother once said that suffering was part of life, but misery is optional. I'm not so sure anymore.

Plug It In, Man

I went out today. My war with technology continues. The first place I went was Memory Express, a local computer shop which will repair my laptop. Their estimate for repair is around $125, assuming they don't have to put in a new keyboard. Instead I bought an inexpensive extrernal keyboard for $30. It's not a perfect solution, but it costs less and means I don't lose my laptop for a week or so while it is in being repaired. The repair will have to wait until I can afford it.

When I said my war with technology continues, I meant more than my laptop. My power wheelchair had its moment in the sun today, both literally and figuratively. Before getting too deep into the story, you need to know a bit about the wiring and the joystick control module on my chair. The module is connected to the power system and sends signals to the wheels via a wiring harness. This harness is connected by way of a plug, connected by a short extension from the joystick module. This plug is not well designed and can come easily disconnected by the simple expedient of rubbing against a door jamb.

So I went out today. It is a nice day here. The sun is shining. The birds are singing. The snow is melting. All is right with the spring time world of Calgary. I got on the bus and went to the aforementioned computer shop. I rolled my way home rather than catch the bus. The voyage was uneventful, until I came through the garage and into the elevator foyer, or at least part way into the elevator foyer. I misjudged the edge, and brushed the aforementioned connection against the door jam. It disconnected. I came to a full stop.

Normally in this kind of situation I would reach down, grab the connection end left dangling, and reconnect the module. This situation did not play out that way. The door I was going through was a heavy metal fire door with an auto-closing piston. I was unable to reach down beside myself because I was too weak to push the door open enoujgh to do the reaching.

I was well and truly stuck. So I called one of the many people I have on my list of emergency helpers, this time the maintenance man for our condo complex. He was across town on business, but fortunately the elevator servicemen were in the complex doing maintenance on the elevators. He asked them to come help me. After what seemed like hours of waiting, they arrived. They disconnected the lock rods to allow the chair to roll freely. They pushed me forwards all of three feet, at which point I could grab the cord. I connected myself. All was well.

It reminds me of the many times I instructed technicians in the fine art of troubleshooting various bits of technology. First, is it plugged in? Second, is it switched on? Third, is it connected to the thing it should be connected to? My power wheelchair met all three conditions. I went home.

The Spirit Of Fonzi

It's been a tough week for me and technology. It goes like that, some good days and some bad days. A lot of my technology failures arise directly from my loss of arm strength. I've managed to break the touch screen on my tablet, there is some sort of problem with the joystick on my power  wheelchair, and this morning my HCA spilled the smallest drop of water you can imagine on my laptop keyboard causing one of the keys to stick.

The tablet problem was pure and simple ALS. I was in bed and wanted to watch something on Netflix. So, as I have habitually done for a few years now, I shifted sideways on my bed as much as I could, then reached out to grab my tablet. It was a reach too far for my weakened left arm. I grabbed my tablet, which promptly slipped from my left hand, tumbling to the floor. There was nothing I could do. I left it there until the next morning when my HCA picked it up for me. I opened it to discover the touch screen was broken. Interestingly enough, the keyboard and mouse are fine, but my touch screen no longer responds to touch.

Next came the joystick on my power wheelchair. For no discernable reason the joystick goes into an error mode, wherein it stops working completely. Fortunately I discovered this on a work day while I was at home. The service technician showed up in about 30 minutes with a replacement joystick module. Alas, the same thing happened a few days later. Once again it was a work day. Once agaain the technician showed up very quickly, this time with a computer module to test various parts and pieces.

The interesting thing in both these cases was that the error would come and go, seemingly randomly, seemingly with no apparent cause. Then it happened this morning, not a weekday, not a workday. There I was stuck in my chair at my kitchen table. I sent the appropriate SOS to my ALS Society case worker. Then I remembered my Dad's advice. If at first you don't succeed, use force. I smacked the joystick module on the side, rather like Fonzi smacking the juke box on Happy Days. It worked!

Alas the situation with my laptop is not so fortunate. The drip of water on the keyboard seems to have shorted one key such that it is on all the time. This key repeats endlessly, right in the log in box for Windows. Thus I cannot log in to my laptop. I hit all the keys with a moderate degree of force, hoping Fonzi would once again appear in spirit. This time he let me down.

So here I am, writing this blog post on my non-touch screen tiny tablet, contemplating the costs of repairing both this table and my laptop. I thing I will forget about the tablet. I can use it the way it is. I will take my laptop to a local computer store early next week, depending on timing, and use this tablet all week for blog posts. That is, as long as the Fonzi approach continues to keep my joystick working.

Today Was A Good Day

I was wondering what to write about today. David was just leaving after helping me with stuff all afternoon. I said to him "Today was a good day". He said "Write that."

That is all.

Moving Furniture

It's going to be a busy evening around here tonight. There are a couple of strong young men coming to take away my old freezer. A friend of one of my caregivers wants it; these fellows are her nephew and a friend. They are supposed to be here now, so I suspect they will be here shortly. Once the freezer is out, I want to mop that area of floor well. It's been a while.

Then there is the new cabinet that's going in the corner where the freezer used to be. It's smaller, lower, and much more functional. I will be able to put my printers on it, clearing more room in the living room. It has cupboards and shelves, so I can put away my paperwork. It even has space for four wine bottles down the middle, not that I need space for more wine. But perhaps the best part is that it has two drawers in it. So finally I get my own, real junk drawer, something I have never had here in this apartment.

The real question is what "else" should go in the cabinet. I will only need one side for my paperwork and filing. The other side could be paper storage, or perhaps office tools and supplies. It might even do for breakfast cereal now that the top of the freezer is gone. My other options around cereal are to eat my way through it and buy no more, since the cereal was mostly for Kate; or to store it on top of the fridge, in which case I would have to do something with the stuff already up there. Fortunately this is not a decision I have to make right away. I like decisions I can defer; it plays to my naturally procrastionationist nature.

The biggest challenge of the evening will be the assembly of the new cabinet. As with almost all furniture these days, it is designed for flat-pack shipping, allowing lower shipping costs and ease of online purchase. I did purchase this online, perhaps the largest item outside of airfair and hotels I have ever purchased over the Internet. So that's one more thing off the list before I die.

So now I wait for the moving crew. Then, construction begins. I likely won't get it done before my friend arrives to help. I can live with that. Help is a good thing.

The Battle Rages

Some of the meetings I have with medical professionals can wear me down to a nub. Today I spent two hours being grilled by an Occupational Therapist. Here in Alberta her role with AHS is essentially to ensure I have the equipment I need, and only the equipment I need, to ensure I live a safe and secure life. She determines what I need by extensive interviewing, physically examining my body's abilities, and by observing a small amout of what I actually do in my day.

The OC I deal with is strongly driven by her role, very opinionated about what someone in my position should be doing. She is also a very poor listener, with little time for what I feel is best for me. After all, I am just the client, with very limited knowledge of what's out there and how I might use it. She, on the other hand, knows everything necessary, including how to keep everybody else happy within the system, but not me.

Her big deal today was my bed. She is adamant that I need to replace my queen sized bed with a small hospital bed. Notwithstanding prior discussions along with a letter from my doctor stating that a standard sized hospital bed would be too small for me, she maintains I need a hospital bed so that my caregivers don't have to walk so far to get from one side of the bed to the other. Notwithstanding my firm desire to maintain my existing headboard and foot board, or at least as much of my existing bed as possible, she insists that another piece of hospital gear in my life would be the best thing for me.

For almost two hours the discussion went on. Not just about hospital beds, but about other equipment which could make life easier for me. My ALS Society Case worker was here along with her, yet she involved him in only the smallest part of the discussion, where she had asked him to bring some specially designed spoons to make it easier for me to eat. I kept one, but I doubt I will use it. Beyond that I suspect he was here to back her up in her whole bed discussion. After all, if I was to have it, the ALS Society would have to purchase it. He said very little. We talked after she left. I got the distinct feeling he agreed with her thoughts, but most certainly not her interaction style.

It all wore me out. After a two hour interrogation, I needed a nap, a long nap. I'm still tired. I don't feel like making dinner. It's all a bit too much sometimes.

Trivia Kings

One of the toughest non-medical parts of living with ALS for as long as I have is the loneliness. I am a single man dealing with an illness that is far to much for me to take some days. Yet I am still here, notwithstanding having made specific plans to leave then cancelling them. There are days, or parts of days, when having to struggle through those times on my own really pushes me to the edge, really makes me wish I had gone through with the MAID plan, or at least died on schedule.

"Died on schedule". As another PALS noted, I do not have an expiration date stamped on my ass. Yet almost five and a half years with ALS, and still living on my own, is what many would call exceptional. You don't hear a lot about the many, many PALS who make up the norm, where they live between 24 and 36 months, or even the abnormal who live up to five years. After that you could be considered unusual, an outlier. I am unusual. I am an outlier.

On of the strongest indicators for prolonged life with ALS is a strong personal relationship and a strong family relationship. Even though I am alone plenty of the time, I am fortunate that my many friends here in Calgary have stepped in to be that strong personal and family relationship. Last night, for example, Dan and Emily came here after their long work day, put me in the van, and took me to meet a bunch of friends at Trivia Night. It's been a long time since I have done this, and I want to do it again. It was fun. There was good food, beer, and great company.

It's an interesting counterpart to earlier in the day, when I had been feeling lonely, struggling to complete even the simplest of the many small tasks there are to be done around my apartment. I think this is one of the things I hate the most, being unable to share those tasks. Another unable to share thing is some of the more difficult parts that come to and through my life on a regular basis. Without going into detail, yesterday was a tough day emotionally.

I faced the day alone, handling things myself, upset within about how my life has worked out. Then Dan and Emily arrived. Things started looking up. I got to Trivia Night; things started looking even better. Others came, many others whom I know and spend time with. It was a terrific night.

Oh, and we won! Trivia kings once again.

Chronic

Chronic. It's such a nasty sounding word; harsh, almost condemning. I have a chronic illness. I suffer from chronic pain. I am chronically tired. These conditions exist, persisting with me continually and for long periods of time. For many physicians these are the worst kinds of conditions to treat. Chronic conditions almost always lead to lifestyle limitations and premature death. I hate being chronic.

It's almost an alien sounding word. Imagine a group of aliens getting off their spaceship. "Hello. We are from the planet Chronic. My name is Org. This is my brother Dorg. And this is my other brother Dorg. We are from the government of Chronic and we are here to help you." That whole chronic word fits right in there, as if it belongs. You can even say it with a ragged edge, like some space robot.

On the other hand, chronic has a tremendous variety of uses, much more than simply describing a medical condition, illness or pain. "This is my friend Ralph. He is chronically late." "This is my friend Jane. She is a chronic liar." "This is my friend Org, or Dorg; I can't tell them apart. He is chronically unhappy." As long as your friends weren't smart enough to understand what chronic meant, or unless they were aliens, you could use chronic in almost every way you can image.

Chronic. It means persisting for a long time or constantly recurring and difficult to eradicate. ALS fits that just perfectly. The damage to my body fits that word just perfectly. I'm chronic. At least that's what my doctor says. Org from the planet Chronic agrees.

Bed Turnover

I spent most of my day today sleeping. Certainly there was the morning routine, where Kathy got my up at 11:00 AM for ablutions, a shower, and dressing. Then, of course, there were exercises, something which always leaves me worn out. I ate my sandwiches, my regular Monday treat. Then, as Kathy left, I parked myself in front of my window, drifting off almost immediately.

When the wheelchair repairman came, I slept through most of that, actually engaging in sleep based conversation, invoking him in parts of my dreams. Once he left, at about 2:30 PM, I settlted into deep slumber until 4:30 PM, when Kabari came to check my catheter bag and to ensure I had taken my pills. After she left, I slept a bit more, finally becoming active, yet still tired, at about 5:00 PM.

For the last hour and a half, I have been putting together a proposal to AISH, the Albertat Assured Income for the Severly Handicapped, to purchase an adjustable bed for me. This would be a queen sized adjustable bed, as opposed to a standard sized hospital bed. I've spend a lot of time in the standard hospital beds. They are built for standard sized people, with an average height of 5' 10" and an average width of skinny. I am neither.

The biggest problem for me in the standard hospital bed is that I cannot roll over. I have to be yanked to one side of the bed, then tilted into a rolled over position. This requires third party assistance. It also means I have to wake up completely, call for help, wait until they get there, then try and get back to sleep. Even with a live-in, this is an unsettling process. Better that I have the right bed.

In some ways doing the proposal was fun. I got to used some of my business skills, including price researching, gathering proposals from vendors, and putting together the written proposal. I enjoyed doing it. Now all I have to hope for is that AISH will approve it, and I will get a bed that will sit me up. Otherwise I will have to go with a hospital bed, most likely on loan from the ALS Society. Then it will be a constant battle against pressure sores, because I can't turn over in those beds.

Nap Now

Today is not a good day, especially for me and my arms. They feel as if they are attached to the sides of my body by powerful stretch bands, held in place except for the smallest amount of sideways detachment requiring tremendous energy and strength. Already the motions of the day have left me worn out, deeply in need of rest, sleep, a nap or even more. It's 2:00 PM in the afternoon, almost, and here I am ready to call it a day, ready to go to bed for the day, and the night.

I hate days like this, where not only is my emotional energy low, but my physical energy too. Not only is my body suffering its limitations poorly, but my mind does not have the will or power to override my body. I don't have the mental strength today to tell myself to get going regardless of how I feel.

I'm going to have a nap, something I do every day now. Sometimes the nap brings me back, rested. Unfortunately it sometimes has the effect of leaving me sleepier than when I started. As with everything with this damned disease, I just don't know how it will turn out. All I know for sure right now is that after only a few hours out of bed, I'm ready to go back there.

I am rapidly becoming that person, the one you see in the ads about ALS, the one who lies in his bed or sits slumped over in his wheelchair, looking off into some distant dream, unable to respond to stimuli in the present. I do nothing. I am nothing. All that exists for me is sleep, waking to eat and perform bodily functions, then sleep again.

I'm going to have a nap now.

Curse Of The Mummy's Wrap

I had an incident last night. Don't worry. This incident involved no bodily fluids, no hours of discomfort, no residual mess or pain. In fact this incident was funny; it could have been written as a Tim Conway comedy sketch. This incident, as all great incidents do, started with a good idea, which then lead to a series of poor decisions in executing that idea.

Last night I decided it would be a good thing if is slept on the "other" side of my bed. My predominant position is on the left side of the bed. This is leading to skin discomfort on my left thigh, nascent pressure sores waiting to blossom full. So, periodically, I change sides in the bed. Actually I don't so much change sides as I have the night HCA position me on that side. The position involves not only the placement of my body, but the position of my hips to allow me to roll from my back to my side, something I cannot do if my hips are slanted in the wrong direction.

All of this was done. I was placed well on the bed. We did a side positioning; it wasn't great as it left me too close to the edge of the bed to get my arms well positioned away from the M-rail. Nonetheless, I was in, and down, ready to sleep. Except I wasn't ready to sleep, so I spent the next hour or so online, reading the news on my phone, checking facebook, tweeting now and again. Finally, at around 11:00 PM, I decided to shut of my night table lamp and head for sleepy land.

That's when I discovered the HCA had forgotten to turn of the other lamp, the one on the other side of the bed, the one clearly out of my reach. No problem. I'll roll the other way, reaching out with my arm to pull the cord. Well, that didn't work. My arms are just not that long. So instead I grabbed my grabby stick, thinking I could grab the pull cord with my stick, then pill the cord to turn the lift off. Unfortunately, even with the stick, I could not make the pull.

So there I was, grabby stick in hand, wondering how to reach that cord. I then realized that if I pulled myself a bit further across the bed I could probably make it. So I pushed and pulled and wiggled myself sideways. I suspect that is when I trapped my sheets and quilt underneath my body. I didn't notice it immedialy as I had lots of slack from the other side of my bed. Unknowing of my trouble arising in the sheet behind my back, I once again reached for the cord. I got it! I also found out that pulling a lamp cord with a grabby stick is almost impossible.

I tried, then I tried. I tried again, then again. Finally I did a massive grab for the cord, not realising I had the lamp stem as well as the cord. I pulled! The lamp, unable to sustain verticality, fell over. The light, in a fit of stubborn anger, did not go off. So now I had the lamp tilted over on the night table and me in the middle of the bed, now unable to get anywhere near the pull cord. So, thinking only of the moment, I piled my excess pillows beside the M-rail to block the lamplight as best I could.

Now it was time to roll back into position, conceding defeat to the lamp, the bed, the grabby stick, whatever. I quit! It was at this moment I discovered that my sliding and rolling had firmly trapped me in my sheets, a victim wrapped in spider's silk, a dead Egyptian trapped in mummy muslin. I could not roll, eithe way. I could barely shift my arms, let alone the bulk of my body. I flung my right arm out to reach the M-rail. hoping one last pull might break me free. I grabbed the M-rail with my right hand, then wiggled my left across, using my fingers to pull my dead arm. I made that last great effort to turn, whereupon my left hand slipped, knocking my tablet computer, the stand it rests upon, my glasses, and, worst of all, my phone, all off the night table.

I lay there, wondering what else could go wrong. Lot's else could go wrong. It didn't. In fact something went right. I noticed that my cell phone had not, in fact, fallen to the floor. It had slid back with my flailing hands, dragging itself under the sheets I was no entangled in. I had my phone! I could call for help!

So I did. I called the AHS Night Nurse Service. They were actually on duty. They were actually available. They sent a nurse who arrived in all of 20 minutes. She fixed the lamp. She picked up the tablet, the stand, and my glasses. She cleared room on my night stand so they would not fall again. She picked up the lamp I had knocked over, turning it off in the process. She pulled the sheets and quilt out from under me. And finally, she repositioned me back to where I should have been in the first place.

And then, I took a sleeping pill and went to sleep.

Serious Lifting

It scares me, how quickly the changes in my arms have come, and how quickly they seem to continue. I have almost no endurance when using my hands and what remains of my arm abilities. My whole body becomes exhausted after just a few minutes of effort, at which time my arms fail me altogether.

There have been a couple of incidentss lately that demonstrate this. The other day I was out doing some shopping, just for a few groceries, mainly things for a fruit plate; melons, pineapple, strawberries. I came home with my bags of goodies, came into the garage, and tried to open the door into the building. It was difficult, especially when the melons in the bags made a concerted effort to escape. Them suckers are heavy!!

After corraling my migrating melons, I made it through the second and third doors into my building. At this point the perigrinating pineapple and mirating melons once again made a bid for freedom. Once again I tugged on bags and pulled on pieces of fruit, getting things back into order on my lap. Then I went to push the elevator button. My left arm refused to move at all. My right arm, the one holding the groceries, was slightly better; it was able to lift slightly. Yet neither could reach the elevator button. So I stopped for a minutes, resting my exhausted muscles. After a few moments I was able to position myself such that I could transfer groceries to my left hand, then fling my right hand upwards enough to hit the button. Fortunately the buttons inside the elevator are easier for me to reach.

The next scary event was this morning. My HCA was slow; not terribly slow, just slow enough to lose about 15 minutes over the course of a 2 1/2 hour visit. She had to leave while my breakfast was halfway done. I went to finish it, making toast, getting poached eggs out of the pan, finishing and serving hash browns with garlic sausage. By the time I was done, I was so weak I could not pick up a coffee cup. Once again I had to rest.

When I was finally able to move both breakfast and coffee to the kitchen table, I was unable to eat after only a few bites. My arms would not lift at all, neither of them. I rested some more. I adjusted my chair to lean backwards, making it easier to get food to my mouth. I managed to eat the rest of breakfast. I finished, once again completely exhausted from the effort.

So I took a nap, a two hour nap. My arms are not fully recovered. They will never be fully recovered. But at least I can pick up my coffee cup now. So I drank my cold coffee, the tried to pick up my laptop. I made it, but it was real effort. This thing is getting serious now.

Snowflakes

Yesterday I sat at my window, wondering at the verdant green lushness of my tree. I had been out, downtown, wearing only a long-sleeved shirt and light pants, and of course a cap for the baldness atop my crown. I admired Nose Hill Park in the distance, imagining summer when the grass was green and the sky still as sunny as it was that day.

Today it is snowing. The temperature has plummeted from 13C down to -3C; it feels even colder than that thanks to the wind blowing the snow about, near sideways. My tree is covered once again in the dusting of white which comes with winter weather. The roads are soaked from tires and car heat melting the snow as quickly as it touches down. The verges of the road, however, are retaining this bit of winter returned to us. It is the classic yoyo effect of spring in Canada, unless you live in the Lower Mainland of BC, where winter lasts perhaps only a few weeks, where the rains wash away the snow almost faster than it touches ground.

I look at those snowflakes, wandering their way downward from thousands of feet in the sky, each formed around the smallest of dust flakes, giving surface for crystallisation to occur. That tiniest of speck, that mote of dust, is in itself a container for thousands, perhaps millions, of bacteria, each of them seeking to survive, even thrive, in what are nearly the harshest conditions this planet has to offer.

Life is a tyrant, unending, persistant, insistant, forcing itself into every possible space on Earth. It is unwilling to give way, unwilling to allow barrent space. It fights and fosters itself from the heights of the sky to the deepest of oceans, even unto the bowels of the earth where no light passes and no water flows. It is almost impossible to understand how much life demands to be, to exist, here on this fragile orb drifting its way through unknown space.

Even as life demands its place, so does death. One cannot exist without the other. Just as life insists, so does death, both in a never-ending balance of dance to and fro. For without death, there could be no life. And without life, death would never come. There are seemingly dead objects in our solar system, unending, enduring, unchanging. Yet even on these dark and desolate surfaces, we find bacteria, life.. and death.

So it is outside my window; inside too. While I live, I await death, as do we all. There is nothing unique in my circumstance, other than the methods of its ending. Just as the simplest of life forms, I will live and then die. It's nothing to worry about so much, except for the here and now, this time and place. Just as the snow, I am blown in the currents of life's wind. Just as the snow, I am here today and gone tomorrow. I have no more enduring or intrinsic value than any other life form. The only difference is that I know what is happening to me, unlike the windblown snowflake with its living passengers, unlike my tree, unlike the rocks, the soil, the sea.

I know I have ALS. It doesn't mean I know how I will die, or even how I will live until I die. All it does is gives me a hint, more of a suggestion as to how death will deal with me. But just like the bacteria all around me, I will most certainly come to an end. I too will melt away, as do the snowflakes which fall today.

Living Like My Tree

I find myself sitting once again in front of my window, the one overlooking the street below, the mall across the street, Nose Hill Park in the distance. My tree, just a few days back heavily covered in snow and ice, stands tall, full and green, all needles and cones, thick branched. It is an amazing thing to me, how much this tree has grown in the last five years, in the years I have lived with ALS. It grows, getting bigger, stronger each day; I shrink, getting weaker, less able, smaller.

This sad bit of melancholy tinges almost everything I do these days. I haven't had a good, solid laugh in a long time. It's not depression so much as dealing with the constant exhaustion and struggle. Today, in what was a fun outing, I came home so tired I needed to sleep for two hours as soon as I came through the door.

It was a fun outing today. A friend snagged a ticket for me to a "food show", a trade fair where suppliers of food and drink show off their wares to commercial customers such as restaurants, pubs, hotels, government purchasers, all that lot. There were samples galore. I stuffed myself with tasty tidbits of seafood, various kinds of meats in sandwiches or on sampler plates, desserts to beat the band, all in small, bite-sized bits, perfect for my limited ability to handle food. There were even beer samplers; I tried an excellent coconut porter, an odd combination with a uniquely interesting flavour.

To say I thanked my friend profusely would be an understatement. It is difficult being my friend these days. I need so much, and I have so little to offer in return. No longer am I the friend with a truck. No longer am I the first to offer help when needed. My resources are expended, so I am grateful when someone offers me a chance to get out, a chance to be in a quasi-business setting where people wear suits and ties instead of scrubs and latex gloves.

It is so sad, that my life is thus defined by home care, medication times, doctors, and health care supplies. I would much rather it was defined the way it was before ALS, a vibrantly painted life rich with the colour I so much enjoy. It is not that I am defined by ALS; it is that my life is hounded and bounded by this pernicious disease.

My tree, now there is life. It draws what it needs from the soil below, pushing ever upwards, sheltering and feeding the birds, holding fast against the wind and weather. I do not live as that tree lives. While I am yet alive, I do not thrive. I do not grow. I am unable to hold fast against all that life hurls at me. I need help so much, and yet it is so hard for others around me. I no longer offer nourishment; I need it. I wish I could be that tree. Now that would be living again.

Lifting Things Up

The inability to get my hands up past my shoulders is creating some new and challenging problems for me. Of course there is the whole inability to feed myself without two hands, a problem partly solved by leaning my chair back to where my hands become more level in their travel rather than up and down. There is also the drinking issue; again, positionng of my chair helps.

Then there are a whole host of smaller things that can only be discovered once you get there. For example, yesterday I found that I cannot put my earbuds into my ears. Once again, laying flat in my wheelchair helps with this, as my hands don't have to go up so much. Also, however, I am also finding it impossible to hold my phone up to my ear, giving me the double whammy of no earbuds and not being able to hold the phone. I'm using the speaker a lot now. It is another solution, but not one I can use while out and about in my chair, or in the van for that matter.

It's also making it extremely difficult to get things out of my cupboards, even out of the first shelf. The lift on the wheelchair helps tremendously for this, yet there are still near impossibilities. For example, I use a grabby stick to get a wine glass out of the cupboard. I grab the stem of the wineglass whereupon the body of the glass comes to rest on the grabber, making it possible for me to lift the whole this down from the cupboard. Except it has become not so much a graceful lift downwards. It's now a controlled crash, hopefully without actually crashing the glass. I'm going to need acrylic wine glasses soon.

Then there are my pills. Getting them collectively into my mouth has been an issue for some time now. I've been using one hand to propel the other upwards, making the pill toss into my mouth a reasonably successful event. These days, though, that toss is getting more problematic. I will soon need help in a thing so simple as taking my pills.

I can keep going; I won't. Here is what I ask of you for today. Every time you lift your hands to do something, stop at chest height. See if you can accomplish what you are trying to do without lifting your arms past your shoulders. See if you can accomplish what you are trying to do if there is any weight at all to what you are trying to lift. It will be an enlightening experiment. Ask me how I know.

Look Ma. No Hands!

When I was diagnosed with ALS, the doctor went through a likely progression with me. One of the topics was losing my ability to eat. We talked about chewing and swallowing, so that's what I thought losing my ability to eat would be all about. I did not think it would be about what is happening now. I am losing the ability to feed myself, to pick up a fork and hold it up to my mouth. My arms just won't make the trip, so whatever utensil I have in my hands only makes it up to my chin.

There is a more complicated part to this change as well. If I lean back, the easier slope helps my arms, so if I am eating with my hands and leaning back a bit, I can get food to my mouth. That means things like sandwiches, burgers, hot dogs, anything which might be considered finger or hand food, is easier for me to eat. Also, it's only a level utensil, like a spoon or a fork on the flat, which can't make it past my chin. If I use a fork to stab something, then turn the fork upwards, I can get it to my mouth. That extra few inches of fork gets me there.

There is one way I can get that flat spoon or fork up to my mouth while sitting up straight; if I use my left hand to help my right. With both hands in play I can get a bit of extra push, getting the utensil to where I can eat from it. It's awkward, but I can make it work.

This has implications for holding a wine glass, or scotch glass, as well. Once again if I tilt back in my chair slightly, I can make it happen. On the other hand, if I am sitting up straight, getting that glass up to my lips now takes two hands. The same is true for a coffee cup or a water glass. The only way it works easily if I relax and lay back.

Some have said it might be time for a straw. It's hard to eat a sandwich through a straw. As to wine and scotch through a straw, that will likely be the last straw. This disease is slowly breaking my back.

I Dropped My Phone

It's late. David just left for home. Kate and her boys were here earlier. They too are gone home. I am once again alone in my quiet little abode, watching the snow swirl and dance, winding its way downward, pulled here and there by gravity and wind. It's April, yet we have snow, and will have for a few days hence. It's icy cold outside too, cold enough for me to want to stay inside all day without complaint, the bitter wind driving the chill deep inside of all it encounters.

The day started off badly, at least for me. My HCA arrived on time; Sam is always on time, unless there is something really serious going on. She dialed to get in. The phone rang. As I went to pick it up, the phone slid through my fingers, tumbling to the floor, under the bed, where I was completely unable to see it, let alone pick it up. I looked for my grabby stick, hoping to use it to get the phone before it stopped ringing. It was nowhere in sight. I later discovered it was reachable, but not visible, sitting on the back of the night table, behind my lamp, clock, pills, catheter tray, et. al.

I missed the first direct call as Sam warned me of her imminent arrival. I missed her first two calls from the front door. I missed her second direct call as she tried in vain to reach me. Then another couple of calls from the front door went by, followed closely by two calls from the CBI office. Then they all gave up and went away. During all this missing of calls, each call closely tracked by my cell phone call log, I had the bright idea to ask for help on Facebook. I also had, in my back pocket so to speak, the knowledge that David was planning to come by at around 2:00 PM. We were going to go look for a few things for the van.

David saw my Facebook post and headed on down, arriving at about 1:30 PM. He retrieved my phone, putting me in place to call CBI, asking my HCA to come back, finally. Unfortunately that was not to be. Sam had finished her day and was off to her second job at a care home. Worse news yet, there were no other HCA's who could get to me before 5:00 PM. I had a few choice words to say to the coordinator, at which point he really went to work. There was, in fact, one of my regular HCA's who could get to me by 3:00 PM. Both David and I thought this was a good idea, as opposed to David trying to get me up and into my wheelchair. So we waited.

Yvonne arrived at 3:18 PM. My day began, fairly uneventfully. David and I agreed that tomorrow would be a better day to go shopping for van supplies, a few things at Costco, and to look for something to go in the corner from whence the old freezer is departing, something to hold HCA records, mail, along with other health records and such. I won't be able to store them in the spare room any more. The live-in caregiver will be in that room. Hopefully this kind of dropped phone incident won't mean quite so much after that.

Sore Muscles

I've just finished my Range of Motion exercises. Well, not just, but about 20 minutes ago. They have left my muscles exhausted, even though I did none of the real work. I can't even do my arm exercises these days without help. So my HCA's have found they are taking longer with me, due both to the increased time it takes to shower and dress me, and the increased number of exercises.

I have asked AHS Home Care to increase the amount of time in the mornings for these activities. The PhysioTherapist assures me that 45 minutes for my exercises is plenty of time. He's close; they usually take a bit less than an hour. I have to demonstrate how the other activities impact the exercises, things like rest time due to ALS, adjusting chairs and furniture to make space. It's not a lot, but it adds a few minutes here and there, and that makes a difference.

Right now my left shoulder is in pain, a dull kind of ache. I have been taking the medications as prescribed; the pain has gotten to be more than I can handle on my own. I need to get to the doctor soon so he can help refer me for an UltraSound, something the doctor in the hospital said was needed to identify the true source of the pain. Then I will likely get directed to a Sports Medicine clinic for cortisone shots. All of this, of course, starts with the underlying issue; weakness due to ALS.

My arms are failing. I wonder how long I will be able to say that? Eventually it will become "my arms don't work". Already my caregivers are doing more and more for me. They now do all my shower, from head to toe. They prepare food when they have time. They mop and sweep. They fill my water jug and mug. They dress me, help me with medications. The list goes on and one. So many things where I need help. Thank goodness I have helpers.

Another Bridge, Another Roadblock

One of the most frustrating things ALS does to me is get in the way of what should be normal household tasks, the things we do, if not daily, at least regularly in the maintenance of our household. Today, for instance, I am cleaning out the freezer in my fridge. I do this in preparation for the loss of my large, stand-up freezer, one of the few losses I don't really mind. Yet here I am, part way through, ground to a complete stop because of the losses I do mind, the losses from ALS.

After a tremendous amount of effort on my part, tremendous because of the loss of strength and ability thanks to ALS, I have emptied the small freezer, the one at the top of my fridge. It's actually quite large if used wisely, unlike the way I have used it by filling it with remants bits of this and extra chunks of that. What I have done is put the stuff I really want to remain frozen into the big freezer awaiting transfer back, disposed of that which really should not have been retained, and put what remains into a basket for my daughter, Kate, to look through when she drops by here on Saturday.

Therein lies the first roadblock. It would appear I am no longer strong enough, at least not today, to open the sliding doors to my patio, whence that basket is bound. It's below freezing weather for a few days to come; another blast of winter has turned Calgary backwards on its meander through spring. The stuff will be fine out there until the weekend, once I get it out there. I have an HCA coming in an hour. There is nothing in the basket which cannot withstand a minor thaw and refreeze, so it will sit on my bench until Kabira gets here. I can go no further.

The other roadblock lies within the small freezer itself. It needs to be wiped clean. This is the first time it has been empty in more than five years. There are all kinds of things that need to be cleaned off and cleaned up in the little box of frozen history. This is the perfect time to do it. Except I cannot. I now lack the ability to reach, or scrub, anything beyond a band of about six inches directly in front of me.

I need someone to come help me clean my freezer, a help task I do not ask for lightly. The problem is, of course, that it is Thursday and everyone is busy, especially busy when it comes to dropping everything to come here and take on the 15 minute task of cleaning out my freezer. While this is not a true obstacle in that I could ask for help and see what happens, it is a "present" obstacle while I ask and wait.

So I have stopped. I will not move forward until Kabira comes to help me put that basket on the porch. I doubt she will have mercy on me and wipe out my freezer. That goes way beyond the care plan, and even though she is generous it is probably another bridge too far. I see a lot of those these days.

I Could Win The Lottery

I have done nothing today, unless you count getting my laundry back from the laundry room. I didn't do the laundry; that was a caregiver. I just had to go get it when it was done. I didn't even take it out of the dryer; one of my neighbours did that for me. All I had to do was get the baskets and dump them on the couch.

My energy of yesterday has disappeared into the wind. All I feel today is depression and sadness. Sure, I have reasons to feel this way. Most days I can deal with this stuff below the surface, wearing a smile while crying inside. Most days I can keep myself energized by the tasks before me, enough so that I at least get one thing done. I haven't even signed the papers which I committed myself to signing last night.

It's all just too overwhelming. It takes so much out of me. Having ALS is enough. Getting bladder infections that put me in hospital is worse. Home care failures are worse yet. My back is still itchy from where the surface skin burned off from the acid in my urine, the urine I slept in for 8 hours on Good Friday. It wasn't all that good for me. The mess is cleaned up. The smell is gone. But the damage remains, on my body and on my spirit. I'm fairly tired of all this.

To talk to me, you would think I sound nothing like my blog. I'm cheerful. If you ask my how I am doing, I'll say "fine" or at worst "I'm doing okay". Most people don't want the rest of the story. I just have to keep going, Sysiphus to the rock of ALS, alone, if not in spirit for certain in body. And my body has taken a beating lately. I'm due for some luck. Of course given my luck, this month I will win the $1,000 a month for life lottery, then die in a couple of months. Sure, that should do the trick.

Home, Awake, and On A Tear

I'm home. I'm home and I must be feeling better because I am on a bit of a tear, a push to accomplish two things as quickly as I can. First, I am going to sign the contract for AHS Self Managed Care tonight. I have reviewed it endlessly, so it's time to get going. Notwithstanding my own signature, I am going to as both David and Anne to review it as well sometime this week. That means next week it will be sent in. The ball will be rolling. Things will be set in motion.

The second item on the list is my big freezer. There is absolutely no reason on earth why a single man on a limited budget should have an old, inefficient full sized, half empty freezer in his dining room. It does little more that burn energy and encourage me to purchase things from Costco in quantities I don't really need. I am not a family of 4 or 6. I do not need 16 hot dog buns and 24 hamburger buns. Sure, I can have the hot dogs and hamburger patties, but I don't need buns for something I eat perhaps every other month, and only one or two of.

By eliminating the freezer, my electricity bill will drop immediately. I will have more space around me in my dining area. It will be easier for my guests to get in and around the table when having dinner with me. The only real loss will be the damage to my incessant desire to hoard food in my freezer and panty.

This does not mean I can't shop at Costco. I just means I will no longer be buying bulk items which I go through slowly. If I want a hot dog, I can go to Safeway and buy a bun, maybe even two, but not 16. If I want a could of hamburgers, I can get a couple of Kaiser buns; a couple, not 24. Buying those things in bulk and storing them in my freezer actually costs me money. On the other hand, value items like the cheese I so dearly enjoy, the odd roast of lamb, some salmon or cod; these are high cost items which are best priced and well sized at Costco.

Even with these items, I should start asking if people want to split a roast lamb. I have the tools and skills to cut down and repackage this stuff. Buy a salmon flat, then cut it into thirds. Three meals, or one for me, two for others, assuming they pay for their part.

The toughest part will be actually removing the freezer from my home. I know I can get help with the consolidation. I am sure some of my friends will help store few things for me. But moving a big, bulky freezer? I don't know about that. Nonetheless, next Saturday is it. Either it goes for free on Kijiji, or it goes to the dump.

Another Day, Another UTI...

Hi, folks - this is David posting for Richard...
He is back in the hospital for another Urinary Tract Infection, and may not be catching up here for a day or two, so asked me to fill in tonight.
It's ironic that he let me do this on April 1... but I won't use this opportunity to take you on an April Fool's ride.  This is the straight dope!


He's in Rockyview this time (not Foothills), which is a bit easier for many of our group of close friends (mostly living in the south of the city), and as I arrived, I met Tonny & Andrea, who'd also answered "the call" this evening.

I'll let him compose his thoughts on this particular E.R. visit when he's come back from his drug-induced sleep tonight. Sometimes I envy his ability to sleep so soundly & easily - despite surroundings as harsh & unfriendly as an E.R. cubicle, he can rest & sleep well & soundly.

I expect the nurses are in for a rough night, as Richard's snoring can ruffle more than a few feathers!


As Richard wrote on Thursday, the van arrived that afternoon - I picked up the truck & took it in to the dealer for reselling, picked up the van & took Richard for a quick trip to the licencing office to renew his recently-expired Disabled placard for the vehicle.

Not a pleasure trip, so it didn't really count as much other than a "yes, it works, and yes, I can get into the front passenger seat space with no issues!" revelation.

Saturday, though, Richard was invited to his daughter Kate's for Easter Dinner, with whomever was able to run him up there.  A live-in caregiver who would be always available to do so, will be handy to have around, but it's good that Richard has a bunch of friends who can do this sort of thing with him, as Kate is part of the group and it had been a while since I'd talked to her.

We officially christened the van - originally considered to be named "Miss Daisy", Richard eventually settled on "Lucille" - by grabbing a lunch of burgers & fries, and both of us dropping fries on the floor.

In the pickup, finding fossilized french fries was a tradition every time you looked for something - it couldn't be a proper road trip without losing a little bit of it on the floor... in the backseat... or in a door pocket.
I dare say this was now the closest I was going to get to searching for Easter Eggs this year - finding the fries as I tried to clean it up as we got to Kate's.

While we don't have pictures of it yet, the van is a 2011 Toyota Sienna, with a Braun Rampvan XT conversion.  2nd-row seats were removed, gas tank moved to the mid-trunk area, 3rd-row seats raised over the gas tank, and floor lowered to give enough headroom for a big wheelchair.  The front seats can be removed but unlike the pickup, the van has no hand controls.  But Richard can still sit in the front passenger space & enjoy the road.  Space is good enough for him to lean back in his power chair & rest, or even sleep.    The side ramp is a folding one (not one that rolls in under the floor).
*Here's a stock photo to give you an idea - looks about the same as ours*:

It drives well, and my brother, who works for Toyota, will now have a number of requests coming his way for discounted parts & accessories... :)

We had a nice time with Kate & Phil & his boys; Phil's parents, and Richard's brothers Peter & Jim.
Unfortunately, we had to leave just after dinner, to make it back the 90-minute drive before Kabira arrived to take care of Richard's evening routine.

I never got the chance to play the Little Richard CD I brought with "Lucille" on it... but there are more days, and road trips, ahead!