Sunday, 30 December 2012

Road Trip

I love a good road trip. As far as I am concerned, seeing the landscape pass by, shifting and changing by the minute, is a great way to spend the day. Even on the boat, where we wander past the sea crusted coast at a blistering five knots, the change from moment to moment is an always changing entertainment.

Today my road trip starts in Vancouver and ends in Kelowna. Brian and I leave at 8:30 and head downtown first to pick up my friend Mike. Then we head out to Abbotsford to pick up my son, Rick. Then it's up the Coquihalla and over to Westbank. With any luck the roads will be good and the drive will be enjoyable.

Of course, I won't be driving. With the damage to my knee, driving will be a challenge; not impossible, just a challenge. Common consensus is that I should be a passenger today and most likely tomorrow too. Being a passenger may seem like a treat, but I will soon lose all ability to drive and I want to take pleasure in that freedom for as long and as much as I can.

You see, freedom is what a road trip is all about. You can go any way you want and take whichever turns appeal. You can stop along the way, visit as you wish, and go when you feel. I will likely do more road trips in the next year or two. I don't know where; I just know.

I want to be free as long as I can.

Saturday, 29 December 2012

Cheer Up, Things Could Be Worse.

If you are in my family, you know the rest of that line. My family treasures a quick wit and fast retort. One of my early life experiences with this was when I was about nine years old. We were visiting my Mom's parents; my Uncle Peter and Aunt Margaret were there too.

I was reading a book about something or other and it used the phrase "marital arts", or perhaps it was "martial arts". The phrasing confused my young mind, so I walked into the living room, looked at my Mother and asked "What's the difference between martial arts and marital arts?" Before I could take a breath, the answer was flung at me; "Not much". The room burst into laughter. I am not even sure who said it, but everyone laughed. Me? I had to figure it out for myself. Yes, I did.

Then there was the time I fell down the front stairs, again at my Grandparents place; I hurt my neck. As boys we were always jumping off the front and back stairs or across the roof from one house to the other. Inevitably someone would fall, usually Jimmie but this time it was me. I walked into the kitchen and said to my Mom, "I have a pain in my neck." You can probably figure out the response.

My brother Matthew's line is that humour is tragedy plus time. This comment is almost always followed by the plaintive question, "Too soon?" Small tragedy, personal pain, small losses; humour arises quickly from these. Larger issues may take longer to laugh at but in our family eventually it all becomes fodder for the humour mill. It's just the way we deal with things.

Whenever my Dad was dealing with something difficult he would say "Cheer up, things could be worse. So I cheered up and sure as hell things got worse."

... And then I fell down and tore the ligaments in my right knee. (Fill in your own joke here; sometimes they write themselves, sometimes you have to get creative.)

Friday, 28 December 2012

The Morning After

I am late in writing this blog but I have a really good excuse. More on the excuse later; first, about my day yesterday.

Yesterday was a day on the boat. Now a day on my sailboat rarely implies a full day of actually sailing. In fact in most cases it is a combination of breakfast or lunch out followed by some sort of local retail therapy. This day was one of those.

We started by getting the boat sorted out. It has been a damp fall and there has been a log of moisture buildup inside the boat. The mold is starting to grow on the wood walls and there are a couple of new, noticeable leaks to contend with. Some of the cushions are showing stains and the carpet was soaked. We put all the cushions in the V-berth and put the carpet up on the salon berth to dry.

Then we started the motor. That was a bit of excitement. When the weather is cold and the motor has been sitting for a while, it doesn't want to start. For a few minutes it just wouldn't catch. Then I said something about this being a sign to sell the boat and suddenly the engine fired up and we were ready to go!

We slipped from our finger at Sewell's Marina and headed out into Howe Sound. The jib sail was unfurled almost immediately and we began drifting along over to Bowen Island under a light breeze. As we headed across the sound, just outside of Tyee Point, a family pod of Harbour Porpoises sprung up from the sea and dashed through the water towards us. For a moment it looked like they were going to collide with the boat. Then, suddenly, they made one of the deep dives that these small porpoises make and we did not see them again.

We took our time getting over to Snug Cove. When we arrived I radioed in for a slip so we could go for lunch. Unfortunately Doc Morgan's was closed. Given my physical challenges I was unlikely to make the walk up the hill to the Bowen Island Pub and I said so the the marina clerk. She said "No worries. You can use the marina car to drive up the hill." That sealed the deal. We went in, tied up and headed uphill for lunch.

The trip back was uneventful and we arrived safely at the dock. We tied up and cleared up the decks, lifting the motor up into its cradle out of the water. Then we stowed the inside gear and got ready to leave. The rest of the crew got off the boat.

Then it happened. As I got off the boat I was trying to step up over the cockpit edge, something I have done many times before. Unfortunately, of late, stepping up has been a problem for me. Using my cane as a brace I was lifting my feet up over the edge. Then, slipping on the wet deck, my cane slid out from under me and down I went onto the cockpit floor.

I was relatively undamaged, except for the immediate impact on my ego. Well, at least I thought I was relatively undamaged. As it turns out I tore the ligaments in my right knee. I know this because I awoke in the middle of the night in screaming pain with every turn and twist of my legs as I tried to sleep. The pain was bad enough that I considered calling 911. Instead I focused on calming myself and my pain, waiting for morning before going to the hospital.

A short trip this morning to the hospital confirmed that no bones were broken, but the ligaments were a mess. The doctor put on a tensor bandage and gave me a prescription for Percoset. He said I should the Percoset as needed, but especially at bed time. Apparently I can expect the pain to come back tonight and every night for a few days. The doctor suggested that I would take a week or so to get better and that I would be unable to walk or drive for a few days.

Thank goodness Mike and Brian are along and willing to drive the truck (and me) back to Calgary.

Thursday, 27 December 2012

Sailing Day

Oh the weather outside is frightful but the fire is so delightful. There's no snow, it's cold and cloudy with a light rain... the perfect weather for a day on board and out of doors.

Spending time on the boat at this time if year is not for the faint of heart. The winds are stronger than in the summer. The rain and cold cuts through every layer of clothing you can wear. The chill stiffens your bones and makes your muscles ache.

It's wonderful.

This will be my first time on board since my solo trip last summer. Back then I could still walk, albiet with a cane. I can still walk now but not for any great distance. Fortunately the boat is only 27 foot long; I can walk the full length. I still have a lot of upper body strength so I can still handle the lines and lift the engine. I can furl and unfurl the foresail and tend the sheets.

The only real challenge is fore deck work. That was my challenge last summer too. The way I do it is sit on my ass and slide forward, hauling myself up on the shrouds and stays for any mast work. I can haul the anchor, raise the dinghy or secure the shore power if necessary.

It's freedom on board. There is no ALS on board. There is no limitation on board. There is only the wind and the sea, and those who are with me on board. I can head up into the calm, run across the breeze or fly downwind on a genoa. I can motor for hours or simply run across the harbour to the pub. We might go to Bowen Island. We might go to Granville Island. We might go to Squamish. We might go to Gibsons.

In fact the toughest part of my day today will likely be choosing where to go, closely followed by getting from the truck to the boat. Fortunately Mike and Brian are here to help with that part. The second toughest part will be getting up from my chair here in this warm living room and heading out doors.

Oh baby, it's cold outside.

Wednesday, 26 December 2012

Losing Things

I want you to try something. Cross your big toe with the first little toe on your foot. You can do that, right? Well most people can do it, even if you can't. You see, I can't either. It's one of the things I have lost. I am slowly losing all control over my toes and my feet in general.

At this point I can still scrunch my toes up, but oddly enough I cannot straighten them out. I have control over the muscles needed to curly my toes, and to curl them tightly. But the muscles needed to uncurl those toes are becoming weaker and weaker. I am losing control over them. The toes on my left foot have a constant small curl these days.

I am losing control over my driving foot. I can still drive but I can see a day coming soon when the hand controls that I consider optional today will be a requirement. It's still a while off, but like a storm cloud in the distance across a prairie sky, I can see it. It's out there and the wind is blowing it this way.

Losing things is a normal part of life. As we age, we all lose things. We lose our strength. We lose short term memory. We lose near sight focal ability. As we age we will all lose muscle control of some sort or other. I am not alone in this. Mine is just more apparent and rapid.

These loses are frustrating and it is rough knowing that they will continue. There are no drugs to stop this process (at least not today) and there are no treatments to reduce its impact. It may slow down, it may speed up; I have no control over that either. It is just happening and there is nothing I can do about it. I see it marching towards me like that storm cloud.

I am losing things. I have lost my illusions about this process. I have lost my left foot. I am losing walking. I will lose driving. I will lose touching. I will lose speaking. I will lose eating. I will lose breathing.

Tuesday, 25 December 2012

Who Wants To Live Forever

It's Christmas, a day to celebrate the life of Jesus. In reality it is a celebration of life for all of us. All civilizations celebrate the Winter Soltice, the return of the Sun, the day when the days start getting longer. For the short lives we live, the seasons, the sun, the cycle of the planets - all of these things appear to go on forever, to be immortal.

The problem is that it is not that simple, whether you have ALS or not.

The rock band Queen did a song for the movie Highlander called "Who Wants To Live Forever". It is a lament where the lead character, an immortal, is watching his wife, a mortal, age and die. His heart is in pain with the sorrow of immortality. He, for one, doesn't want to live forever, but he is cursed to do so.

The lyrics are very simple. The start with the recognition of the incongruity of their love, that love between the two of them has no place or time where it can truly exist. What follows is the plaintive question; "Who wants to live forever?" Then the lyrics reach a revelation, that love lives forever and that one day of loving someone is worth an eternity.

My life is like that. All those around me are immortal. They will not fade as I will fade. I will go and they will be left behind. Yet I too ask the question. My reality is that I am simply waiting for my mortal moment, for that day when I will leave and others will stay behind.

There is one line in the song that really sums it all up; "Forever is our today". My today is my forever. Every day I get to live is another forever. Every day that I get to be with those I love and those who love me is my forever. I can wait for death to come tomorrow.

Today I am alive, immortal. Who waits forever anyway?

Monday, 24 December 2012

I Hate Toe Drop

One of the challenges of my disease is the impact is has on the way I walk, or rather the way I don't walk. People with ALS with a lower limb onset (legs like me) all get it. Toe Drop, also called Foot Drop, is a condition where your forefoot drops when lifted due to weakness, damage to the peroneal nerve or paralysis of the muscles in the back of the lower leg. It happens because I have difficulty moving my ankle and toes upward (dorsiflexion).

It's not only people with ALS who get toe drop; stroke victims get it as do people with back injuries or other  damage to their nervous system. There are devices to help with this, things like an ankle-foot orthotic (AFO) or something called a Dictus. These devices basically strengthen the ankle or directly lift the front of your foot.

The problem with these devices is they both need shoes to work properly. So what do you do when you are at home, wearing your slippers or just your socks?

This is where I get into trouble. Toe drop gets worse when I get tired (or when I get a couple of drinks into me). I get tired at the end of my day. I am at home, relaxing, with my shoes off at the end of my day. So the time when I am most likely to have a bad case of toe drop is the very time when I am unlikely to be wearing a preventative device.

With toe drop, I tend to stub my toe on my carpet. When this happens, I fall down. This usually happens when I get tired (or when I get a couple of drinks into me). The only plus in this is that I tend to fall on carpet.

The only really consistent way to deal with toe drop while not wearing a device is through "high stepping". The more tired I get, the more you will see me do this. I will lift my foot higher than normal as I walk in an attempt to ensure my toe does not stub on the floor. This usually works, except when I get tired (or when I get a couple of drinks into me). Then I forget that I have ALS and toe drop. Then I stub my toe on the carpet and you know what happens next.

If you notice a theme here, please feel free to not comment. As for me, I will just lift my feet a bit higher.

Sunday, 23 December 2012

Wasn't That A Party!

Do you remember the Irish Rovers? They had a song called "Wasn't That A Party". The song tells the story of a heavy night of jolly Irish drunken partying. Well I can't say I lived up to that model last night but we had a terrific dinner party at my place.

It's a challenge for me to have these kinds of parties and I could no longer do it were it not for the terrific group of friends I have around me. Sure, I got things going with the turkey and the espresso maker but as each of them arrived they all pitched in, from helping in the kitchen to taking out the garbage. I can run my kitchen reasonably well on my own but having an amazing group of people who all do a piece of it makes the whole night a lot more fun.

My real trouble in all this is getting out of my chair. Every time I would try to get up, someone would shoo me out of the kitchen and back into my chair. Every time my glass was empty, someone would fill it with something delicious. Someone else set the plates out. Someone else served the food. Someone else carved the turkey. I just sat around and enjoyed the company.

It is this kind of activity that makes me want to keep going; the company of friends, good food and drink, and the laughter of an evening. The people in this group range in age from my age to young people in their early 20's and every decade in between. They are interesting and intelligent, funny and smart, filled with life. It's a solid core of good people in my daily life.

They say that ALS patients with strong support groups live longer and have a better quality of life. I have a great support community - friends, family and medical. I want to prove the professionals right. I want to live longer and enjoy my quality of life.

I want to have more parties.

Saturday, 22 December 2012

Christmas Dinner

This is a late in the day blog. My routine is messed up. I am making Christmas dinner for about 15 people today. I had to do some shopping this morning and picked up a few extra things for the party. It has been a busy day.

It has been tough in another way. For the first time in my life I am suffering from lower back pain. I am almost certain this is due to the use of the wheelchair and the fact that my cane is about an inch shorter than it should be. It's a nagging kind of pain, dull and unrelenting. I hope this is not a harbinger of things to come.

On the plus side, I can still whip up a heck of a meal in the kitchen. My walker serves as a swivel seat and I can do most of what I need to do sitting down. Having a helper to put the 20 pound turkey in the oven helps too.

A couple of my buddies are coming over to help with the fixings - potatoes, yams, beans, brussel sprouts, cole slaw and such. Plus several people are bringing over desserts and other dinner goodies (like sweet potato pie). It's going to be fun!

Friday, 21 December 2012

Don't Trade Today for Tomorrow

Recently while encouraging a friend of mine to participate in an activity, she said she couldn't do it. She had all kinds of reasons, each of which seemed important enough to her. In reality she was saying "I don't want to do this as much as I want to do these other things", or perhaps "I don't see enough benefit to me in doing what you suggest and here are other things that benefit me more".

I can see her point of view. If something doesn't appeal to you, don't do it. Don't make excuses for not doing it; just say "I don't want to do it". Don't try to rationalize or convince others that your reasons for not wanting to do something should be their reasons for not wanting it too. Speak for yourself and accept that responsibility.

One of the silliest reasons I hear for not doing something has to do with retirement. I know people who plan their whole lives around what their retirement will look like. These people work hard to get the money, trading their life today for what might happen tomorrow. They can't do this or that now but are looking forward to the day when they have more time. They trade their today for the vague possibility of what tomorrow might look like.

The problem is you may not be there when that day arrives. In fact for many people, me included, trading today for tomorrow is simply a bad idea. This doesn't mean you shouldn't plan for a future. But every time you find yourself squeezing the joy and living out from today in exchange for the possibility of a life tomorrow, think about my situation. I no longer do long term planning.

Balance is the key to life. Joy in the day must be in balance with the possibility of a tomorrow. The challenge is in getting the right balance. Those who would trade away love, life, family, and the joy of the day in exchange for a fleeting possibility some time down the road are cheating themselves.

What's worse is that many of them are making excuses or using things like money and time as a lie to themselves. If you don't want to do something, just say so. But don't tell me that you might do it sometime in the future. Live for today, plan for tomorrow and be happy with your choices.

And don't trade today for tomorrow. Tomorrow never comes.

Thursday, 20 December 2012

To Eat or Not To Eat, That Is The Real Question

It's happening. Christmas is here. I know that for a fact because I can feel the weight of it gathering at my girth. My skinny shirt is puckered at the buttons. (I am going to have to change into a not-so-skinny shirt.) I can feel the fat flinging itself at me, sticking to my belly.

What happened to "eat whatever you like"? It's not that I can't gain weight; apparently being fat doesn't matter given my timeline. What's that all about? Just because I have a short shelf life doesn't mean I want to spend my remaining days an obese blob!

In summer 2011 when all this started I weighed around 255 pounds. While I did not know I had ALS, I sure knew I was fat and out of shape. I attributed much of my leg problems to the back injury and just being out of shape. So my first tactic was to lose weight. I dropped from a high of probably 260 down to a recent low of 215. Recent events and my desire to take advantage of things has me back at 220, maybe 222. I don't like it.

So back to the diet I must go. Or must I? Perhaps more importantly I will be getting into a physio program soon, one where I will concentrate on building whatever muscle strength I can in my upper body and working to slow the loss of mobility in my legs.

For most of you losing the Christmas gift will be intentional. In my case eventually the disease will rob me of the ability to eat. At that point I will need the extra weight to carry me for a while. How long I don't know. On the other hand having that extra weight now will reduce my mobility and negatively impact my current lifestyle and quality of life.

So rock or hard place? Gain weight while I still can and live with it now, or lose weight and see myself waste away more quickly later on.

I am going to live for today, and that means being who and what I want to be right now. I don't want to be fat. I don't like fat. I want to be fit. I like fit.

Of course, I am still going to enjoy the holidays, but watch out in January!

Wednesday, 19 December 2012

Gentlemen, Start Your Engines

I am off to a slow start today. My engine is barely started. It isn't the ALS that is doing this; it's my desire to see the sunrise from my chair. It's winter. The sun is slow to rise and quick to leave us. Here in Calgary it seems slower than most. The prairie to the east stretches out the sunrise, the light of the day slowly staining the eastern sky from black to eggshell blue to bright and clear.

There is a tinge of pink on the horizon making the thin clouds into strands of cotton candy, pretending to be a red sunrise. It is beautiful. I wanted to enjoy it this morning. My engine can wait. I can see the jets taking off and landing in the distance. The snow has fallen from the tree in front of my apartment and there is not a touch of wind. It is a gentle start to a new day.

Shifting gears completely, my daughter asked me yesterday if I would write a biography. Personally I think I have had a pretty exciting life; lots of travel and adventure, wonderful children and friends, and a family history so full of stories that I probably could write a book about it. The challenge of most books is where to start, but in a biography it's easy. You start at the beginning.

The fact that I was born is not particularly spectacular. After all it was 1955, the middle of the great postwar Baby Boom. All kinds of children were born, many of them in Victoria, BC just as I was. It was summer, July 21 and I was the second child of my family. My older brother, Adam, was also born in Victoria, having arrived about 16 months earlier. Imagine my poor Mom, deeply pregnant in the steaming heat of a coastal BC summer, with a full tilt toddler in tow. Worse yet she was to do this three more times after me, each time a boy and all of us full tilt.

My father was in the Canadian Navy in 1955. I like to tell folks that my first boat was a destroyer; I thought my Dad was in charge of everything. At least my Father was home for my birth; the Navy had seen fit to deploy him to Australia while my Mother delivered my older brother; she delivered her first child solo. 

It seems odd to me now to think of it but my Mom was only 23 when I was born and not yet 22 when Adam was born. That’s seems awfully young. I was 27 when my first child was born and that still seems young. Of course we never think of our parents (or grandparents for that matter) as young, especially not that young.

Victoria in those days was small, just as I was, not that I remember. I remember very little of that time of my life; in fact nothing at all. Perhaps that simply reflects how ordinary and common was the beginning of my life.

It was not to stay that way.

Tuesday, 18 December 2012

Firsts and Lasts

I have "good leg days" and "bad leg days". Most often they are related to my general state of being. If I am tired, either emotionally or physically, it tends to show up in my leg strength (or lack thereof). If I am rested and in a good emotional space, then I tend to do better. It makes sense if you think about it.

Today is a good leg day, so far. Even on a good leg day, though, I think about the things that are firsts and lasts in my life. This morning I found myself thinking about what it will be like when I can no longer care for myself, when I lose my ability to dress myself, my ability to put on my shoes, my ability to feed myself.

Those are the "lasts". I also started thinking about the firsts; the first time I used my wheelchair, the first time I used my cane, the first time I will need to eat through a tube, the first time I will need help in the bathroom.

And then I thought about losing my dignity.

Perhaps the only thing this disease will not take from me is my spirit and soul. Regardless of how it attacks my body, I will still be me. I will still be that strength of spirit and that soul of adventure. I will still be the impatient, the needy, the laughing, the silly. I will still be all that I am, I just won't have a body that works.

In the end, even that will go. Then I will be a memory. You will remember the last time you saw me or read my blog or heard my voice. You will remember the last time I made you dinner or shared a glass of wine with you. You will remember your last. Then you will think of your first Christmas without me, your first sailing trip without me, your first birthday without me. You will remember your firsts.

You see, I am not alone in these firsts and lasts.

Monday, 17 December 2012

I Notice Things

I have called ALS the petty thief. It is. I notice the small losses each day, even when there aren't any. The ALS Clinic Coordinator calls it "hyper vigilance". I notice every detail and wonder if it is the thief or just the sweep of time. Since ALS typically attacks people between 40 and 60, some of the things I am feeling are more likely the result of getting older. Others, not so much.

This morning I noticed a couple of small things, things that might simply be the morning or might be something else. I noticed that when I was showering I held on to the safety rail in the shower just a bit more than I did last week. When I was shaving I held onto the bathroom door frame to steady myself, something I haven't done before (except when I was really hung over). I notice a tingling in my hands that seems different than other tingles. My hips hurt and it seemed to take a bit more effort to move about. It seemed a bit more difficult to get my socks on.

Now I know that each and every one of these things can be explained as a simple function of growing older. I know that I have not been as active as I used to be so my circulation is not as good as it used to be. Hence the tingling. I know that I might just be having a slow start to my day or I might just be a little more tired this morning than other mornings. Hips hurting and slow moving? You should see me some days in hunting camp or on the boat; this is not a new thing. I know all this; I trust none of it.

Despite all this, I got up this morning. I got dressed by myself this morning. I showered myself this morning. I made breakfast and coffee for myself this morning. Now I am sitting in my chair typing my blog, independently. Soon I will get in my truck and drive to work. I know there is a time coming when these freedoms will go. I don't want to rush it.

But I notice things.

Sunday, 16 December 2012

Ups and Downs

It's been an interesting month. Yes, it has been a month since I went to the hospital to find out why my legs were failing me. Four weeks ago was my last day of freedom. Since then I have been living with ALS. In the last month, I have been diagnosed, tested, pricked, poked and prodded. It has been a month, and in that month my ALS score has dropped by 1. That's how it works.

I scored a 38 when I completed my FRS profile. The junior neurologist scored me at a 42. The senior neurologist said reality was likely somewhere in the middle of those two scores. A typical ALS patient loses one point per month. Zero is zero. The arithmetic is what it looks like.

I, however, am not a typical ALS patient. You see there is no typical with ALS. I may lose one point a month for a few months and then lose nothing for six months. Or I may lose 2 points a month. Noboby really knows for sure, except they are fairly certain (to about 95%) that I will not see age 65. And even then, they are not sure about that.

So screw them all! I am going to live my life on my own terms. I am going to be who I am, do what I do, go where I go and simply be a force of nature. I will rage against the wind, relish the sunset, shiver in the cold and bask in the warmth. I will say what I think, feel what I feel, and do it all in the way that makes me happy.

Hold it. Doesn't that sound like me just being me?

Over the last month, pretty much everyone has had an opinion on what I should do and how I should manage my feelings and physical needs. Almost everyone has had an opinion on alternative therapies and the possibilities of medical error. Almost everyone has an opinion on some portion, part or parcel of my being. That's tough to deal with.

It's tough to deal with helping everyone else cope with the loss and stress of this disease. I have spent most of the last month comforting others, making others feel safe around me, helping others process this news, helping others cope with their emotions. That's a lot of work and it leads to an awful lot of ups and downs.

Well grow up, folks. This is MY reality. While it may impact you, some terribly and some lightly, I am tired of the ups and downs. Get over it! I have ALS and it is terminal. Now can we simply get back to living, loving, and laughing.

A few, a very few, people in my life ARE helping me process this. Through their love and care, they are listening as I wander through these emotional ups and downs, as I process, verbally as I always do, the feelings, fears and future. The best of these are those who simply listen and say "I understand" or "I get it".

If you want to express true support and love, just be there when I want to talk (or sometimes when I need a hand). Don't advise. Don't suggest. Don't respond. If you really want to help me, listen to me ramble on and when I am done just say "I understand". I will know you really don't, because this is not happening to, just as I cannot understand the true pain of the tragedies in your life. But I can try and you can lie.

I hate the ups and downs. I need all my energy to manage them. I want a smoother ride.

Saturday, 15 December 2012

Richard Hires A Housekeeper

Yes, it's true. I have hired someone to come in a couple of hours a week to help me with the housekeeping. My brother Peter says I shouldn't have waited for ALS to do this and that having a housekeeper is just a real treat. Others tell me I need someone to vacuum and clean the bathroom because apparently I ain't doin' so good in that department. Regardless of reason, I now have a housekeeper.

One of my concerns about having a housekeeper is the whole trust thing. I have never had anyone come into my home as a trusted individual and look after things. I don't have much to steal; I certainly don't need to worry about that. Part of me had hoped that I could look to my son for some of this help. On the other hand, as a close friend suggested to me, it might be better if my son could spend time being with me rather than cleaning the apartment. So there you go.

The other concern is money. Right now it's only $50 a week. That may not seem like much, especially in light of the cost of things like going out for lunch or buying gas for my truck. I was raised in a frugal household and some of that carries on in me. So I worry about it even when my brain knows it is silly.

That brings to light how little control we really have over the stuff we worry about. I need to work on worrying about the right things; family, friends, loved ones and life. Perhaps having the housekeeper will give me more freedom to focus on what is important.

Friday, 14 December 2012

It's All Relative

When I was in the hospital at the ALS Clinic the other day, I had a moment to talk to the neurologist about how his work with ALS patience impacted him. Surprisingly, he described his work as uplifting, saying that almost all of the ALS patients were positive in their approach to their disease and their life. He went on to say that "patients with other diseases whine and complain about things that ALS patients consider insignificant".

I am sure this is true, if only based on the few ALS patients I've talked with so far. Inevitably they talk about what they can do, what they are doing, what they want to do. They almost never talk about what they have lost or what they can no longer do. And when they talk about these losses, they talk about the fact of it not the feelings of it. They really are a positive lot.

Maybe this rapid acceptance, positivity and calm rise up because we know what is happening, it's relatively painless, and that there is nothing we can do about it. After all, if you have cancer, even the worst forms of that dreaded disease, you can get treatment, difficult and painful though it may be, and you can believe in a longer future. Now image yourself, suffering through the pain of treatment, wondering how long this pain will continue and knowing that even after all this pain you might still die. At least I don't have to worry about that.

There are other parts of this disease that lead to a positive attitude. While my muscles are leaving me, my mind is staying with me. My humour is still sharp and I can still snap an idea up and run with it. (Well, not so much run as shuffle, but you know what I mean.) Now imagine the challenge of staying sharp while drugged up with pain killers and the myriad of chemicals that the drug companies tell us we need to treat diseases like cancer and such. Once again, my disease, while challenging in terms of treatment and outcome, is relatively easy; very little pain, lots support, lots of devices to make living easier. All I have to do is live until I die.

That's what we all are doing.

Thursday, 13 December 2012

Patients and Patience

Yesterday at the ALS Clinic was a marathon, filled with dozens of ALS professionals. I had my breathing measured; they said I was at 90% capacity, well within the normal range. That "normal" range is anywhere from 80% to 110%. Then there was the arterial blood gases test, which meant getting blood from an artery, not a vein. The artery that works best is deep inside the wrist, so that took a bit.

After the first medical incursions came meetings with the occupational therapists (two of them). The therapy team determined that I might want to get a power wheelchair; it isn't urgent but having it for longer excursions would help avoid tiring me out. They are also helping me get a few other things (like a shower seat and such) to help make life easier for me. One thing they did encourage me to do is to use the wheelchair more. Walking will not strengthen my legs; they are done. All that walking does is exhaust any strength I have in my legs, taking that strength away from other things I might be doing.

It makes more sense for me to strengthen my upper body. According to the neurologists (there were two of them for this visit) I am showing some loss of strength in my hands. It's not much loss and may not be related to ALS; it is something they want to track. But my arms are in good shape as are my shoulders and neck.

Then they brought in the next physio-therapist and we talked about getting me into an exercise program and perhaps some sort of gym program. We also talked about yoga and meditation. It would appear I have gained five pounds over the last month, so eating whatever I want may not be my best immediate strategy.

Finally there was the counseling psychologist. We talked about how I would live and the importance of living in the moment. Apparently saving money for my retirement is not a good plan these days. We talked about government pensions and how long I should work. I think I want to work for a while yet, but how long will depend entirely on my state of mind and physical capabilities.

There was an awful lot more going on, too much for this space with too many other people to remember. After four hours, I was ready to leave. Thank goodness Peter was with me.

Wednesday, 12 December 2012

ALS Clinic

Today is an important day. It will be my first visit to the ALS Clinic here in Calgary. The ALS Clinic is a multi-disciplinary clinic focused on the needs of ALS patients. It is a bit scary. The clinic consists of some 20 or so medical and other professionals. Their sole focus is helping me, and other ALS patients, with their journey through this disease.

The list of professionals is daunting to say the least. It includes the ALS Clinic Coordinator, five Neurologists, two Respirologists, a Palliative Care Physician, a Physical Medicine and Rehabilitation Specialist, a Clinical Neuropsychologist, a Social Work Counselor, the ALS Clinic Clerk, a Regional Case Manager, a Dental Hygienist, a Dietitian, a Speech Language Pathologist, an Occupational Therapist, a Physical Therapist, a Respiratory Therapist, a specialist for the Home Enteral Therapy Program
(they handle nutrition via G-Tube), a representative from ALS Society, and finally, a Research Nurse.

That's one hell of a list! Apparently they take this disease very seriously. I guess that is a good thing, but it is a bit daunting. All things being considered, I would rather be somewhere else, Peoria perhaps.

Since this is my first visit, the Clinic Coordinator suggests I could be meeting with more than 10 different people. My pulmonary function (lung function) will be tested at this and every future visit; the visits will happen every few months to start with and then will increase as I decrease. I will likely need a specialized blood test (arterial blood gases) along with some other tests.Then meetings with the therapists and psychologists and every other "ist" you could care to name. The only real plus of this setting is that most of the "ists" will come to me as opposed to me having to go to them.

This is a frightening experience, a saddening experience. It feels like a date with an executioner. I will go and they will tell me when they expect my life to end, their certainty like an actuary with a gun. They will describe what I can expect in terms of both quantity and quality of life. I will be measured and my body will be found wanting in the balance. They will tell me when they expect my legs to fail, my arms to fail, my speech to fail, my life to fail.

After giving me this news they will tell me how to manage the mechanics of what remains of this life and then they will do their best to attend to the spiritual damage of the day, helping me to plan for the next life.

Even though my brother Peter is coming with me, I face this alone. You see, each of us faces this destiny alone. Each of us must take these steps at some point. No matter how hard those who love you try to help, there is only one person, one spirit and one mind facing this - me.


Tuesday, 11 December 2012

Choices

Someone very close to me recently asked "Would you rather be rid of this disease and live to be 100 but in a miserable relationship and unhappy with your life, or would you rather be happy but have the disease and only three years to live?" The real question is would I choose happiness and a short life over misery and a long life.

It's a difficult question because there are so many other issues to consider. How does my happiness weigh against the responsibilities I have to my family? Is that kind of unhappiness pervasive or could I find things to be happy about? Is happiness pervasive or transient?

Oddly enough, even with these other questions, I was able to answer quickly. I would trade a long, unhappy life away in exchange for a short, happy life. Living an unhappy life is a thousand deaths. The pain of unhappiness is like dying every waking moment. And while my life will be shorter than I hoped, I certainly want it to be happy.

This is simply a philosophical thought exercise. Of course there will come a time when this is the only exercise I can do, when my body fails and I can only think about these things. It's good to start practicing these thought exercises early so that when I get there I can understand their real importance.

We make choices. I choose to be happy. I will take a day of happiness over a month of misery. I choose to be joyful. I choose to laugh, love and live for as long as God gives me.

Monday, 10 December 2012

Dependency

I am an independent man, used to doing things for myself, going where I want to go, looking after my own needs and wants. That changed forever yesterday. I had my first wheelchair event.

It wasn't actually a wheelchair event. It was a group event with some friends and some people I didn't know. We went to see the Christmas lights at the Calgary Zoo. The zoo does this event every year; it's called Zoolights. They light up the zoo with about 1.5 million Christmas lights.

The zoo is a big place, impossible for me to walk through it all. So I took my wheelchair. Even with the chair the pathway had enough hills and sideways slopes that it would have been difficult for me, if not impossible, without the help of my friend Tonny Gee. He pushed me around most of the night, up the steeper ramps and across some of the sideways slopes.

Don't get me wrong. The zoo has done a ton of work to ensure people in wheelchairs can enjoy it. Still, those slope made it impossible and I was dependent on not just Tonny, but others too, to make sure I could see it all. I am not used to depending on others and it is hard on my ego and pride.

There are a couple of interesting things I noticed about being in the chair. I spent a lot of time in disembodied conversation with Tonny as he pushed from behind the chair. His words floated over my head and I often found myself twisting to respond to the location of his voice. I also noticed how "invisible" I suddenly became, seated below the eye level of most people. The just forget you are there since they cannot make eye contact.

On the other hand many of my friends made extra efforts to ensure I was included, safe, and warm. Some of us went for snacks at Boston Pizza afterwards and sitting with people at eye level makes a big difference. The evening was a good thing for me to do, getting me out with people and enjoying the outdoors.

All in all, I will take the wheelchair and being out over sitting at home doing nothing.

Sunday, 9 December 2012

I Am Still In Denial

In 1969 Elisabeth Kübler-Ross wrote a book called "On Death and Dying" in which she explored the emotions and feelings felt by terminally ill patients. These people were facing their impending death. She looked at their experience and found that each of them went through, in varying degrees, five clear stages in their emotional process - denial, anger, bargaining, depression and finally acceptance.

What is interesting about these stages is that they are neither linear nor progressive. It was entirely possible to for a person to feel fully accepting of his or her circumstance one day, or even for one hour, and then the next feel anger, denial, or depression. It was entirely possible for someone to engage in bargaining with God for life while at the same time cursing God for death. The only truism is that these feelings were universal.

I go through this. Some days I can accept my fate; other days I get depressed. Sometimes I do these things at the same time! Other days I rail in anger against a God who could do this to me and yet a few moments later I thank Him for all he has given me. Interestingly enough, I don't do the bargaining thing and I feel more acceptance more often. Yet I still have this denial in the back of my brain that says none of this is true and soon the doctors will find out that they made a mistake. I don't believe it.

Around the same time as Elisabeth Kübler-Ross pubilished "On Death and Dying", a group of researchers published a paper on the feelings of people in their final weeks. Those people who had a high level of meaning and purpose in their life consistently faced less fear and despair that those with lives holding less purpose or special meaning.

When my final weeks come, I want to face them with dignity and grace, in loving bond with God, in touch with those I love and knowing that my life meant something. I am working on it. The fact that I have time to do this makes me a lucky man.

Saturday, 8 December 2012

Compounding

It's Saturday morning and I slept in. Most of the time this would be a good thing and part of it was. But as I lay in my bed slowing drifting from sleep to wake, I started thinking. Most of the time this would be a good thing and part of it was. But then I started thinking about the future.

Thinking about the future triggers a lot of emotions for me, feelings of loss and grief creep in, wondering about what I will miss, how my grandchildren will turn out and if they will ever know about me. I am sure they will know I existed but they will never know what I am, or was.

Emotions compound. Thinking about one negative emotion leads to others, my emotional state picks out all the other bad things and compounds them together. For "normal" life this would still happen. ALS makes it worse. When I feel bad about something in my life, I start thinking about the prognosis and end stage of my disease. Then I really feel bad.

I wish there was an easy way to get rid of this bad stuff. Often I shove it onto the others in my life. That means my friends and family have to hear about it, and that makes them feel bad. And it compounds some more.

Keeping a positive attitude takes effort and desire. But there are some simple things I can do too. For example, I can get out of bed and make myself a latte. I can think about some of the wonderful things in my life, the people I love and those who love me. I can enjoy the sun shining in the window. I can write. I can smile.

Then the good stuff starts compounding.

Friday, 7 December 2012

My Body is Rejecting Me

Whenever my Dad had a hangover, and he had plenty of them, he used to say "My body is rejecting me." Now I get to say that for real. ALS is an auto-immune disease. My body is attacking my motor neurons.

We don't know what causes it or what triggers it, although there are lots of suspects. Scientists are looking at correlation between trauma and ALS, statin cholesterol drugs and ALS, chemical exposure and ALS, and so on. No matter the cause, my own body is doing this to me.

The unfortunate reality is that I have ALS, regardless of source. My body is rejecting me. In return I am going to reject my body. What do I mean by that? I am going to fight to keep my spirits and approach to life. I am going to live as much in my mind as I possibly can. I am going to daily remind myself that I am more than my physical self.

Sometimes that is easy, such as when I do physical things that are fun; I just do them differently. Other times I am forced to confront my physical challenges. Yesterday my ALS Case Manager brought my interim wheelchair. I didn't like it. She brought me a walker; I didn't like it. She brought me a shower chair; I didn't like it.

I kept them, but I rejected them.

Thursday, 6 December 2012

A View From My Window

Okay, I will admit it right out front. I choose that title to be provocative and to make people think. I bet you all thought there might be some deep philosophical statement about how life looked from my new point of view. Sometimes a cigar is just a cigar.

What I really want to share is the view from my apartment window, but not in pictures. I want to share the feeling of it, the sense of it, the place of it.

My apartment main window looks out over the top of Market Mall. The Bay sign shines brightly as does Toys R Us. The street is busy and the parking lot is right across that street. So what makes the view so interesting?

In the center of my window there is a fir tree. Every day that tree looks different. One day it is snow covered, another day it sways in the wind and yet another it stands still and calm. Behind the tree is the bulk of the shopping mall, square and squat, a giant cement box hulking in the midst of a gianter parking lot.

But in the back of all of this is the sky and the rising sun. Each day I get to sit, enjoy my morning coffee, and watch the sky creep into life. Today is cloudy, dark, heavy. Yesterday was bright and colourful, a classic prairie sunrise. Tomorrow will be different again.

As the last month has gone by, the sun has worked its way south. Soon it will change directions and return, crawling back like some reluctant lover, forcing itself inch by inch into my view.

I can't change any of it but I love seeing it each morning as I sit and enjoy my coffee.

Wednesday, 5 December 2012

New Toys

The ALS Case Manager came by today. It was an interesting visit. First of all, her approach was very helpful and positive. She felt the apartment would be just fine for a long time and that there were only a few things I needed to make my life easier. We talked a lot about my personal support network and how Alberta Health Services could help.

On the other hand, there is some bad news. Apparently AHS will not pay for house-cleaning. So I still have to clean my own bathroom or hire someone to do it. :(

There were a couple of other interesting outcomes from the visit. We are ordering a transfer seat for my bathtub so if I get tired I can sit to take a shower. I don't have to right now but we are thinking ahead. In addition we are getting a rolling stool / stand for me to use in the kitchen. Right now I use a chair from my dining set. The rolling stand will act as a walker or brace whenever I need it, increasing my sense of safety and stability in the kitchen. Those of you who know how much I like to cook will understand how important this is to me.

And now the big news... I am being fitted for a personal, custom made wheelchair. I only need the chair for longer outings, such as going shopping or going on some sort of excursion. However it makes more sense to get one now for those times that I need it rather than waiting until I need one all the time before ordering it. As the Case Manager says, just because I have it doesn't mean I have to use it all the time, but having it means I can use it when I want to.

She was quite positive around my upper body strength and the longer term travel options. As she said, I can do most things from a wheel chair. Mobility is not as big a problem as breathing. Since my ALS has started in my legs, as long as it does not progress too rapidly or go after my breathing muscles, I can still do a lot for things for at least the next year or so, even when my legs fail completely.

There is a lot more happening, but that will be for another day.

Tuesday, 4 December 2012

Just Another Ordinary Day

I woke up this morning and thought about ALS. I made breakfast thinking about how this might work as the disease progresses. I made my coffee and wondered about teaching my son to do it the way I like it, because there will come a day when I cannot do it. It looks like another ordinary day.

That's right. It's another ordinary day. I got up. I shaved and brushed my teeth. (And cleaned the toilet too, but not with my toothbrush.) I got dressed for work. I made coffee and breakfast and now I am sitting down to eat and write my blog.

It's another ordinary day. I will go to work in about a half an hour. I will do my work and make things happen. After work I will go to Trivia Night at the Unicorn Pub. Before going I will make my usual batch of guacamole and take it with me the way I always do. I will have a few beers with friends and come home to bed.

It's just another ordinary day. But there is nothing ordinary about it.

Monday, 3 December 2012

I'm Still Me

Having a terminal illness changes you, but not as much as you might think. I am still the same person I was two weeks ago. I have the same issues and make the same mistakes (maybe different ones, but you know what I mean). I have the same fears and frailties. If having a terminal illness made you a saint, we would all be saints because we all suffer from the terminal illness of living.

Yesterday I had one of those days, the days where you do and say things and then later on go "what the heck was that all about". I think the only thing having ALS does is add some intensity to these kinds of days. Since time is short, everything takes on an urgency that it might not otherwise have.

What I need to do is remember that I am the one with the short shelf life, and just because I have a timeline doesn't mean everyone else has to have a timeline. I need to remember that "one day at a time" means enjoying each day, not stuffing it. Patience is important, for me and for everyone else.

Forgiveness is also important. I need to forgive others for their challenges, and myself for mine. So today I am going to focus on being patient and forgiving. I wonder how I will do?

Sunday, 2 December 2012

Seasons

One of the things they say in the ALS Manual (yes, there is an ALS Manual and you can find it on the ALS Canada Website - www.als.ca) is that this disease will change your relationships with friends and family. For some, it will pull them closer and for others it will push them away. Some people have the strength to face a terminal illness, and for others the reality of this disease is just too hard to take.

Another unfortunate reality is that life goes on. People come into your life and leave your life just as if you didn't have ALS. Some of those people offer a tremendous enrichment to your life while others go as quickly as they can. I have already experienced these things. In the ultimate irony, I met a fascinating woman just three days before I was diagnosed. After long and careful consideration, she felt that she simply could not build a relationship in this situation. It is easy to understand her point of view.

I've also had friends simply drop off the radar, completely unable to understand or cope with what is happening to me. That, too, is understandable. Fortunately for me I have an amazing family and a core of people in my life who have the strength to face the future with me and the wisdom to know that life is short for all of us. I am lucky to have these people in my life.

As for those who come and go, so do the seasons. I love the seasons but as we drift from fall into winter, I learn to love the new season for its own reasons and to remind myself that the old seasons will eventually return. I may not see them all, but they will be out there somewhere.

Saturday, 1 December 2012

Stress is the Real Killer

After only a few days at work, and successful days for the most part, I can see why doctors and therapists suggest that ALS patients leave work as soon as possible. Stress, that's why.

My work can be very stressful. In addition I am in the late stages of finalizing my divorce with the attendant stress associated with letters from lawyers, legal bills, and such things. Between these two things, I have a lot of additional stress in my life on top of the stress of having a terminal illness. Yesterday was a tough day.

Stress has been linked to the rate of progression in ALS. In a reseach paper published in "The FASEB Journal" published online in August 29, 2011, the authors suggest that "stress is capable of accelerating disease progression ... for ALS."

The unfortunate part of this is that I derive great satisfaction from doing good work and I love the place where I work. The people in my work family are amazing for the most part, and those that are not all that great are also not all that important to me.

So what to do? Well no matter what fulfillment I derive from my work, the combined stresses of the divorce, the disease and my work are probably making matters worse instead of better. The stress of the divorce is not going to stop, nor can I stop the disease, so my first focus will be stopping work in as timely a manner as possible, or as my neurologist said "sooner rather than later".

On Monday I will go to work. I go to the ALS clinic on December 12th. It is a multi-disciplinary clinic with neurologists, therapists and counselors. I think I will ask them for input and guidance. Then I will decide what to do about work.

For today I am going to enjoy Saturday and a day away from the office. I slept in this morning doing nothing until 9:00 AM. This afternoon a friend is coming over and we are going to put up the Christmas tree.

Friday, 30 November 2012

Theft Protection

ALS is a persistent petty thief. It steals little things over a long period of time. It steals invisibly, in the dark.

I have a weapon. While the ALS may steal my muscles, it will not steal my mind. I can take every moment and store it, keeping it locked safely in my mind where the thief cannot steal it. I can preserve every event and savour it. I can live a vivid internal life, even when my external limitations hamper me.

Keeping each moment precious is not as hard as you think. Yesterday I looked at the snow on the trees outside my office. I thought for a moment about how many days like this I might see and snapped a picture of those trees with my mind. I took a moment to realize the beauty of those trees and that snow.

Then I wondered at the people scurrying by, on their way to and fro, rushing to busy places and doing busy things, ignoring the wonderful world around them. I wondered if those people knew what they would do in my situation. I wondered how many of them would die before they had the chance to appreciate living.

I have been given a gift; the gift of life, the present that lets me love the present. I am a lucky man. I get to see and love each minute of life.

Thursday, 29 November 2012

Some Days Are Tougher Than Others

Having just been diagnosed, I am still bouncing pillar to post with emotions. The least little stress can overwhelm me, and simply talking about my family and friends has the ability to make me burst into tears. I know this will settle as I adjust, but some days are tougher than others.

Yesterday was a tough day. My first day back to work consisted of dealing with the usual work challenges, plus the challenge of telling my co-workers. My work family is an important part of my life, and they are as challenged as everyone else. Each person will take their own view and approach, and each will need support from me and others as they deal with this news.

The other challenge is my motivation. When I woke up this morning, I just wanted to stay in bed. I haven't lost my will to live; I have to work at getting back into my life. I don't know how long it will take, but I know that eventually my life will settle back into familiar routines and patterns.

On the plus side, I am having a bowl of Mini-Wheats for breakfast today. This is the first time I have had breakfast cereal in over a year. Being on a weight loss diet right now just doesn't make a lot of sense. I need to eat right, but I think it might be okay to have some things that I have missed in the last year.

Some days are tougher than others. The way to deal with that is to take joy in the pleasures that I have.

Wednesday, 28 November 2012

Living with ALS

Last week I was diagnosed with ALS. It was not a good week.

For those of you who don't know what ALS is, it is a muscle wasting disease that attacks the motor nerves of the body. Basically your nerves die and the voluntary muscles in your body waste away from lack of a stimulating signal.

ALS is a terminal illness. About half the people with ALS die within 3 years and about 75% die within 5 years. Less than 5% live longer than 10 years. You can find out more about ALS at www.als.ca.

I am not going to say much more today. My simple choice now is what I do with the rest of my life, just like everyone else. My choice is to live with ALS, not to die from it. Of course I will die from something, but today I choose to live.

Monday, 20 August 2012

Ask Me Anything

Special Note


On Saturday, August 20th, 2016, I would like to do an "Ask Me Anything" blog post. On that day I will respond to any questions asked, regardless of how personal or inane. No matter what you ask, I will answer it as best I can, as honestly as I can. It can be about ALS. It can be about writing. It can be about my personal life. It can be about my career. You can ask me anything.

To pose a question, simply make a comment on this post. This will stay at the top of my blog until August 20th.