Saturday, 21 July 2018

Happy Birthday To Me.


Today is my 63rd birthday. It's another milestone, another marker I did not expect to make. When I was diagnosed with ALS, I was 57 years old. By that time I had been symptomatic for almost 2 years. Who knows, maybe there were symptoms before that, things I did not see or understand. When I was diagnosed, the doctor said I would likely live 36 months with ALS. Once I got over the shock, I did some research and confirmed that 36 months was the average life expectancy for someone with ALS. I also realized I had already been sick for 2 years. The numbers did not look good.

Then I did pretty much the only thing I could do; I got on with living my life. My goal was to get what I could out of life for as long as I was living. ALS was not a death sentence for me. It was a life sentence. I would have to live with this disease for as long as I was alive. I figured that even 60 would be a crap shoot. I never figured I would come up winning for this long.

Sixty came, and went. Sixty-one, then sixty two. Each year I wondered if I would see another. That has not changed. This year has been very cruel to me, stealing much of my arm strength, my ability to drive, my ability to even lift a bottle of wine. The collapse of my arms has been stunning to me. Maybe I am not so different from other PALS, except that instead of three years I might get six. That's all of it that I can see.

Will I make it to 64? Well for me life continues to be a crap shoot. Hell, I don't even know if I will make it to next month, let alone next year. All I can do is what I have done from the beginning. Wake up each morning. Live the day I am given. Go to sleep each night. It doesn't really matter if I make it to 64. What really matters is if I make it to tomorrow.

Friday, 20 July 2018

In Vancouver

One of the truly terrific things about coming back to Vancouver is visiting old haunts, seeing old friends and spending time with family. What's even better is when I get to share those haunts with others, especially those who don't understand that I had a life before ALS, that I did things before I was in a wheelchair. It was like that today.

After some indecision, we left the hotel and headed for Cypress Bowl. The lookout halfway up the hill offers a tremendous view, an amazing overlook of the city, English Bay, Burrard Inlet, and Georgia Strait. For people who have not been there, it kind of leaves them in awe of the scope of the city and its surrounds, the landscape, the mountains, the water. The list goes on and on. Shelby suddenly came to realize that Vancouver is nestled on the edge, hemmed in be ocean and mountains, the sprawl spreading out the Fraser Valley and south to the US border.

Our next stop was Horseshoe Bay and the Troller Pub, a traditional haunt of mine from my seagoing days. Megan Sewell was as wonderful as ever in her loving and effusive greeting. We talked for a bit, catching up. Then she let us have a key for the docks so I could show Shelby and David around, and check out Chris Gordon's boat Rainbow. It was a multiple picture opportunity. We just so happened to see a Catalina 27 which could very easily have been my boat in the past. I was happy to see it, remembering once again old days and old friends.

From there we drove Marine Drive all the way to the Lions Gate Bridge, then came off and up to Prospect Point in Stanley Park. It was nice the hear Shelby exclaim "Oh this is so pretty!" as we walked up to the lookout. Until then I wasn't sure the city had had much impact on her. Given the pictures she took, I'm pretty sure she was impressed by the park and the city.

Granville Island Market was our last stop. I must confess this was as much for me as for anyone else. I wanted my traditional coffee, or rather Caramel Machiotto, from the Blue Parrot Cafe. I wanted to sit by the window and watch the watercraft go by, to see the gulls stealing lunch from the tourists, to hear the sounds of the market. We weren't there long, but it was long enough to grab a loaf of Olive Bread from the Terra Bakery.

Then it was back to the hotel to drop off Shelby, and on to dinner with Chris, Jeanette, Chris, and Dianne. It was a great visit, although a bit difficult for me. Their lives continue onward while mine has been frozen in place, or at least somewhat frozen in place. I admit to being on a road trip. Yet their lives sound so much more active, so much more lively. It hurts a bit, especially when faced with needing help to eat, a straw to drink a beer.

Even with that bit of sadness, the visit, and the day, was terrific. I'm glad I could be there, glad I could visit. I am lucky to have such good friends.

Thursday, 19 July 2018

Out And About

I missed writing yesterday. It's because I am on a road trip, along with David and Shelby. It's so cool to be on the road again, watching the miles fly by, admiring the majestic mountains, the seemingly endless forests. To fly down the highway, from prairie to peak, overland, in and out of valleys, from pass to pass; it's an adventurer's life, one I miss so much.

It was the same with my boat, to get on board and go, simply to explore, to wonder about what was around the next bend in the shoreline, after the next narrows, beyond those islands up there. I am compelled to remind myself that I have had a lifetime of this, between waterway and highway, seeing what might be beyond whatever lay next in front of me.

Nonetheless, I am sad. On this trip David and Shelby are doing the driving. I am tucked away neatly in the back seat, out of conversational distance. Thanks to the van windows, I have a decent view, but only at essentially eye level. I can't look up, seeing the mountaintops off in the distance, barren of snow, shimmering in the summer heat. Now if only a bear, a deer, an elk, even a moose were to wander alongside the road. That would be something to see.

The effort involved in getting me road worthy is something to see too. These days it takes a portable lift, a sling, a full suitcase of medical supplies, and another small suitcase for my clothing. Eliminate all the acoutrements of illness. All you are left with are a few shirts, some pants, socks, underwear. Yet with ALS, it takes two other people to ensure I can travel, get into bed, get out of bed, do all the things I need to do. It is no easy task. I am grateful that David has made this work, that Shelby is continuing to care for me on the road. I can still get out and about. That's the good part.

Tuesday, 17 July 2018

I'm Tired

I'm tired. I was tired when I got up this morning. I was tired as I ate my breakfast. I was tired as I went out to get a replacement for the water jug I broke. I was tired when I stopped in the food court of the mall to rest up for a bit. I'm tired now, ready to nap, to sleep.

I'm tired of being tired. I'm tired of the exhaustion. I'm tired of the effort. I'm tired of the work, the weakness, the weariness of it all. I'm tired of dropping things. I'm tired of being unable to pick them up. I'm tired of things getting heavier and heavier as I get weaker and weaker. I'm tired of so many things being out of my reach, beyond my grasp, too far. I'm tired of shaking hands, trembling arms, losing muscles.

I'm tired of illness. I'm tired of every little thing that turns into a crisis or event. I'm tired of living with the ever-present threat of death. I'm tired of all the drugs, catheters, towels and wipes. I'm tired of having to have someone else wash me, clean me, wipe up after me. I'm tired of being sorry, embarrassed, humiliated. I'm tired of bowel issues, urinary issues, breathing issues, eating issues.

I'm tired of the fight. Each day I become less and less able, less and less willing. Each day the top of the mountain seems higher, further away, shrouded in mist, angular. Each day I become increasingly dependent, unable to do the least thing for myself. Each day I have to wake up and face this monster. Each day I have to will myself to live and go forward.

I'm tired of having ALS.

Monday, 16 July 2018

Effort And Planning

It's been tough the last couple of days. My arms have been especially weak, at times simply falling at my side, unable to raise even their own weight. When this happens my elbows lock, leaving me only my shoulder muscles to work with, weak as they are. What I end up doing is trying to fling my locked arm around, up far enough to hit the armrest on my wheelchair. This unlocks my elbow, allowing me to rest my arms until they are ready to go again.

There's a lot of this kind of stuff lately, where I have to use both hands to pick up a cup, where I have to rest my arms after a few bites of a meal, where I put myself on a slope to eat so I don't have to life straight up. Right now I want a cup of water. I'm stalling, not wanting to get it because of the work involved.

Those of you who ask where my caregiver is need to realize that she doesn't work 24 hours a day. She is out for a walk right now, rightly enjoying the pleasant, warm weather here in Calgary. She is here plenty. Last night I had a midnight catheter accident. She got out of bed at 5:00 AM, came into my room, fixed me up, then went back to bed. That's a bit of an interruption. So I want to be sure to interrupt as little as possible, to do as much as I can on my own.

In reality I could have asked her to fill my water cup as she went out. She walked right in front of me, stood there for a moment, then left. It would have been very easy to ask. The truth is that I didn't think about it. I was focused on the moment, not on the absence of water. I will get my own. It will just take some effort and planning.

That's what I need to make sure I have a bit of arm strength when I need it; effort and planning.

Sunday, 15 July 2018

What's Coming Up Next

I am having increasing problems lifting my arms. This means things like eating, drinking, picking stuff up; all kinds of things where I use my arms are now almost beyond me. A few months ago it was a periodic thing. Now the normal is where my arms have great difficulty; the exceptions are where things work at least halfway decently.

Another new norm; this last few months have seen a near total collapse in my arms and shoulders. They have been leaving me for a while. The only thing which has changed has been the pace of change. This disease forever leaves me struggling with the new normal. I read on Facebook today that ALS really stands for Always Losing Something. This is more than just a bit true. It is the foundation of the disease.

I wonder how long it will be before I am completely without arm strength? This is the place I said I would not go. Yet here I am, marching firmly towards having no useful arms at all. I am glad I have the MAID stuff in place although I wonder if I will really use it when the time comes. I suspect I will, even though I am in no hurry. I'm getting by. I'm mostly happy. My mood is generally good. I'm not sure it's time to leave yet.

Still, yesterday was kind of depressing. I went out for sushi with David. He had to help me eat a couple of times. I managed the rest, although I had to use a fork instead of chop sticks. What I have learned in the last few weeks is that if my arms give out, all I need to do is rest for a bit then try again. Usually them come back. The sad part is that I know for sure there will be a time when they won't come back, a time when they are done completely. That's what's coming up next.

Saturday, 14 July 2018

What Next?

This is just plain stupid. I now have a blockage in my urethra! Arrrrgh. It feels like a kidney stone, sharp and cutting as it sits in there stopping the flow of urine. When it gets really exciting is when we put in the in/out catheter. That's when it really hurts, as Shelby pushes past it, clearing the way to drain my bladder.

The only way to really deal with this is for me to drink plenty of fluids, perhaps as much as two or three liters a day, hoping that all of this will flush out the stone, or worse, stones. That also assumes that I will be able to pee it out. Since yesterday I've produce very little urine in my catheter bag, while draining my bladder has produced near record amounts of urine. Yet I don't think the stone, assuming that's what it is, will pass through the in/out catheter. It feels like it might, but it hasn't yet. This also assumes there is only one of these buggers in there.

This is the whole deal with ALS. Everything is a bit more complicated. Everything takes more out of me. Everything cause me more difficulty, more pain, more exertion, more exhaustion. Kidney stones are a tough thing for normal people. For me they seem to be more painful, thanks to pushing a catheter in there twice a day. For me they seem to be taking longer to pass, most likely because my bladder muscles are weak, making the urine stream to weak to push against them.

When will it be over? When is enough enough? Why do I keep fighting this war in the face of certain failure, steady pain, complete exhaustion? What next?