There's been another article posted on the Internet by another research team presenting another breakthrough in research around treatments for ALS. This article, along with a host of others, presents a picture of incredible developments with fantastic possibilities, raising the hopes of thousands of terminally ill ALS patients, the hope for a treatment, a cure, a tomorrow and a future. The only problem is that so many of the research discoveries are not the hoped for miracle, they are not the hoped for cure.
Today's article is another in an ongoing bombardment of articles announcing a major advance in ALS treatments using a mouse model. In this particular study, researchers "succeeded for the first time in stopping the degeneration and loss of motor neurons and the progression of symptoms of the disease". This is indeed very good news for mice with ALS, however the key line in the article for those of us humans with this dreadful disease is "While this result was achieved with a model mouse, it is thought that a similar molecular mechanism underlies sporadic ALS in human patients..."
Notice that "it is thought" part. The truth is that researchers can cure lots of things in mice that they cannot cure in people. Diabetes springs to mind as one of the examples. They've been able to cure diabetes in mice for some time now and it is only recently that any sort of progress has been made in replicating the result in human studies. They have'd done it yet; there is still no cure for diabetes in humans. The harsh truth is that they just don't know how to make that leap from mice to men.
However, this article is not a lot of smoke and mirrors, nor is it a simple fund raising exercise. One of the greatest challenges in treating neurological disorders of any sort is having treatments which move across the "brain/blood barrier". We have a system in our brain that stops foreign genetic contaminants from transferring from the blood to the brain. This is a good thing as a lot of bad stuff moves through our bodies and we don't want that stuff in our brains. Watch the movie "The Fly" with Jeff Goldblum; you'll see why.
This particular study successfully introduced genetic material into the blood stream and that material crossed the barrier and impacted the genes that are thought to cause ALS in humans, and mice too. It showed that it is indeed possible to target genetic repair, even in cases of sporadic ALS, using a simple injection of genetic material. It paints the picture of a possible cure by doing something as simple as getting a shot at the doctor's office.
This research does not offer a cure, at least not in humans. What it does is show a pathway for delivery of genetic repairs, something that will benefit a great number of diseases. That's a good thing, for both mice and men.
Saturday, 30 November 2013
Friday, 29 November 2013
Thank You
This is blog entry number 366. I have a full year of blog entries behind me and have missed only one day, New Year's Eve of 2012. When I started this blog I did not know how impactful it would be, to me and to many others. My intent at first writing was simply to share my life with those around me, to give my family and friends a window through which they could view this process, this march down the pathway of ALS.
My first entry was short, simply an introduction to what was happening to me. When I wrote that first entry on November 28, 2012, I thought it was a simple statement about me having ALS. As I read it now, with a year behind me of struggle and change, I realize that it was in fact a fist of challenge thrown up in the air, a revolutionary salute, defiance flung in the face of destiny. What I did not know then, but know for certain now, was that the first entry in my blog would be my manifesto, my statement of intent.
That statement is truer today than it was 365 days ago. On that first day, I wrote "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." Each day from that moment I have chosen to renew that vow, to raise my fist once again and demand life from the face of death. Each day I have made the personal commitment to move forward and to keep going.
Since that day there have been nearly 60,000 unique page views. There are hundreds of people each day who take the time to share this voyage of discovery with me, so see these new lands and far horizons through that window, filtered by the lens of these words. The bulk of my guests come from Canada and the USA, yet many come from elsewhere. These virtual visitors arrive on my literary doorstep from all across the world, places as diverse as China and Europe, Central Africa and South America, Australia and India.
There have been comments by the hundreds, and not just from my Mom. People have reached out and shared their stories with me by email and on Facebook, followed me on Twitter, shared their lives with me in person and through the ether. To read these statistics, each representing a search for something, a reason for knowing, is to discover that, despite my greatest fears, I will not die alone. I know you are out there. Thank you.
My first entry was short, simply an introduction to what was happening to me. When I wrote that first entry on November 28, 2012, I thought it was a simple statement about me having ALS. As I read it now, with a year behind me of struggle and change, I realize that it was in fact a fist of challenge thrown up in the air, a revolutionary salute, defiance flung in the face of destiny. What I did not know then, but know for certain now, was that the first entry in my blog would be my manifesto, my statement of intent.
That statement is truer today than it was 365 days ago. On that first day, I wrote "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." Each day from that moment I have chosen to renew that vow, to raise my fist once again and demand life from the face of death. Each day I have made the personal commitment to move forward and to keep going.
Since that day there have been nearly 60,000 unique page views. There are hundreds of people each day who take the time to share this voyage of discovery with me, so see these new lands and far horizons through that window, filtered by the lens of these words. The bulk of my guests come from Canada and the USA, yet many come from elsewhere. These virtual visitors arrive on my literary doorstep from all across the world, places as diverse as China and Europe, Central Africa and South America, Australia and India.
There have been comments by the hundreds, and not just from my Mom. People have reached out and shared their stories with me by email and on Facebook, followed me on Twitter, shared their lives with me in person and through the ether. To read these statistics, each representing a search for something, a reason for knowing, is to discover that, despite my greatest fears, I will not die alone. I know you are out there. Thank you.
Thursday, 28 November 2013
I Wonder
I am regularly touched by the compassion and care shown, not just to me but to many, by PALS in far worse shape than me. At the same time I hear from a great many of them, how their struggle with this awful disease has left them bereft, aimless, wandering in their lives. I hear from them about their joys and pleasures, and I hear of their pain and struggle. Then I wonder why. I don't wonder why they got ALS; nobody knows why we get ALS. I wonder why about a great many other things, but mostly I wonder why they keep going, keep fighting, keep struggling to live a life against these terrible odds and with this horrible affliction.
Where does this will to live come from? This morning I awoke thinking about my own future, about what will happen with Ricky moves out and returns to Vancouver, something he must do eventually; about what will happen when I can no longer hold anything in my left hand and eventually my right hand; about what will happen when I no longer have the money to pay for my truck or apartment; about what will happen when I can't even get out of bed.
Then I got a message from a fellow PALS, a man who has no meaningful movement, a man who is stuck in bed most of the time. He too was wondering why we work so hard to keep going.
The counselling psychologist tells me to focus on today, to focus on living in the moment. When I ask about rent and car and food, he rightly points out that these things happen whether or not I have ALS. The difference is that with ALS I am no longer working, no longer producing wealth but instead consuming it. He points out that my financial situation is good for another year or two, and who knows what might happen in that time. Well, based on all the data and information available, I know what will happen. My condition will deteriorate. I will become more and more physically infirm. I will lose everything and be left a shell. That's what will happen.
Yet today I got out of bed. Today I got dressed. And when my online friend reached out to me I said to him that if I was there we would sit on the couch together, drink a beer, and watch football. He's going to do that today, with family and friends all round him. When I get that far, I wonder where my children will be? I wonder who will be with me? I wonder how I will spend that day?
Where does this will to live come from? This morning I awoke thinking about my own future, about what will happen with Ricky moves out and returns to Vancouver, something he must do eventually; about what will happen when I can no longer hold anything in my left hand and eventually my right hand; about what will happen when I no longer have the money to pay for my truck or apartment; about what will happen when I can't even get out of bed.
Then I got a message from a fellow PALS, a man who has no meaningful movement, a man who is stuck in bed most of the time. He too was wondering why we work so hard to keep going.
The counselling psychologist tells me to focus on today, to focus on living in the moment. When I ask about rent and car and food, he rightly points out that these things happen whether or not I have ALS. The difference is that with ALS I am no longer working, no longer producing wealth but instead consuming it. He points out that my financial situation is good for another year or two, and who knows what might happen in that time. Well, based on all the data and information available, I know what will happen. My condition will deteriorate. I will become more and more physically infirm. I will lose everything and be left a shell. That's what will happen.
Yet today I got out of bed. Today I got dressed. And when my online friend reached out to me I said to him that if I was there we would sit on the couch together, drink a beer, and watch football. He's going to do that today, with family and friends all round him. When I get that far, I wonder where my children will be? I wonder who will be with me? I wonder how I will spend that day?
Wednesday, 27 November 2013
My Left Arm
Everyone with ALS wants to be the one who beats it, the one who recovers from the muscle loss and destruction of this illness. Everyone wants to live without the wheelchairs, hoyer lifts, bi-paps, trachs and all the other accouterments. Everyone of us wants out of this place, off of this path, away from this progression. I am no different; I live in the foolish hope that something good will happen someday.
It did not happen today.
Over the last few weeks I have been noticing a tiredness in my upper left arm, rather like the tiredness I felt in my legs during the spring of 2011. I've noticed an ache in the muscle, a sort of low grade sense of pull within it. That ache has translated into me doing things just a bit differently, taking a rest when doing heaving lifting, favouring my right hand, using my power chair more willingly. That ache was something I had seen before.
Today I went to the ALS Clinic, something I do every couple of months or so; my last clinic resulted in the warfarin for the blood clot in my left thigh. Over the summer, however, there had been almost no change in my condition. The progression seemed to have slowed and perhaps even stopped. The doctors warned me that this could change just as quickly to progression as it did to pause. They warned me that this dark beast could, and would, rise up again to steal more from me, that it would come and eventually take another part of my life.
I did not want to believe them. I wanted to be that one person, that person for whom the rules of ALS changed. I wanted to be the person who got stuck at lower paralysis, living a vibrant and active life with the upper half of my body, at least for a while. I wanted to be the patient that others talked about, that guy who went on for years and years, without any further progression.
It did not happen today. At the ALS Clinic today we identified that ache in my left bicep as the subtle onset of muscle loss, the beginnings of the beginning, that infinitesimally small initial step down the path leading to a destination I know all too well. Today ALS decided that my left arm was up for grabs, only it is taking from me the ability to grab it. Today I found out for certain that I will not be that one, the one who beats the odds.
How long will it take? I don't know. It took almost 2 years for me to lose my legs completely, but my arms may be different. I don't know. All I know for sure is that my left arm is weaker today than it was yesterday.
It did not happen today.
Over the last few weeks I have been noticing a tiredness in my upper left arm, rather like the tiredness I felt in my legs during the spring of 2011. I've noticed an ache in the muscle, a sort of low grade sense of pull within it. That ache has translated into me doing things just a bit differently, taking a rest when doing heaving lifting, favouring my right hand, using my power chair more willingly. That ache was something I had seen before.
Today I went to the ALS Clinic, something I do every couple of months or so; my last clinic resulted in the warfarin for the blood clot in my left thigh. Over the summer, however, there had been almost no change in my condition. The progression seemed to have slowed and perhaps even stopped. The doctors warned me that this could change just as quickly to progression as it did to pause. They warned me that this dark beast could, and would, rise up again to steal more from me, that it would come and eventually take another part of my life.
I did not want to believe them. I wanted to be that one person, that person for whom the rules of ALS changed. I wanted to be the person who got stuck at lower paralysis, living a vibrant and active life with the upper half of my body, at least for a while. I wanted to be the patient that others talked about, that guy who went on for years and years, without any further progression.
It did not happen today. At the ALS Clinic today we identified that ache in my left bicep as the subtle onset of muscle loss, the beginnings of the beginning, that infinitesimally small initial step down the path leading to a destination I know all too well. Today ALS decided that my left arm was up for grabs, only it is taking from me the ability to grab it. Today I found out for certain that I will not be that one, the one who beats the odds.
How long will it take? I don't know. It took almost 2 years for me to lose my legs completely, but my arms may be different. I don't know. All I know for sure is that my left arm is weaker today than it was yesterday.
Tuesday, 26 November 2013
A Weird Kind Of Challenge
I bounce back and forth. I have always bounced back and forth, one day feeling like life is amazing and a few days later feeling like it was just wasn't worth the effort. Now, with ALS, that bounce is even more noticeable, more visible, not just to me but to those around me. Mostly I try to cover it up, try to put on a happy face and saccharine my way through the day. Even with all this, if it is not visible to others it is most certainly visible to me.
Today is the wrong side of the bounce, the sad perihelion of my emotional pendulum. Today I am asking myself "Why bother?" Before anyone freaks out, runs to the phone, hops on a bus or posts all kinds of sappy support statements, this is just another curve in the road of my life, and not even a sharp one at that. Everyone has down days; it's just that mine take on a much different, larger, more oppressive hue, richer in blue and black. I have a bloody good reason to be down.
Last night I was online chatting with another Person with ALS. We both agreed in wondering why we kept trying. If you look at it rationally, with no hope for a cure and not even a reasonable treatment, there is no good outcome to this disease and, by and large, a very poor quality of life as one goes through it. Day by day our lives are stolen from us, not as they are from others, in simple aging, but in an ever accelerating downhill slide into decrepitude. Our lives do not simply pass, they race past, leaving our dreams and hopes spinning in the dust like a license plate in a bad movie scene.
It's no wonder we ask the question, "Why bother?" In fact the most amazing thing is that we bother at all. It is the highest testament to the human spirit that those of us with this disease don't simply give up at the first opportunity. I know we all, or almost all, think about it daily, if not hourly, depending on our condition. I, along with many other PALs I talk to, constantly weigh the balance of our lives, wondering if we should continue, living with the pressure of death. Yet onward we go, unable to quench our desire to live and our hope for tomorrow.
I don't know why I bother. I just do. As my online friend said while describing a particularly difficult moment in his day, a day spent hacking up phlegm, unable to moving, trapped in his bed; "...tomorrow there be small beautiful moments, but I just wanted it over during that (difficult) stint... I have this feeling that I have to see it through to the end otherwise I would take myself out. I have no heaven or hell fears, but it feels like a challenge in a weird way."
Today is the wrong side of the bounce, the sad perihelion of my emotional pendulum. Today I am asking myself "Why bother?" Before anyone freaks out, runs to the phone, hops on a bus or posts all kinds of sappy support statements, this is just another curve in the road of my life, and not even a sharp one at that. Everyone has down days; it's just that mine take on a much different, larger, more oppressive hue, richer in blue and black. I have a bloody good reason to be down.
Last night I was online chatting with another Person with ALS. We both agreed in wondering why we kept trying. If you look at it rationally, with no hope for a cure and not even a reasonable treatment, there is no good outcome to this disease and, by and large, a very poor quality of life as one goes through it. Day by day our lives are stolen from us, not as they are from others, in simple aging, but in an ever accelerating downhill slide into decrepitude. Our lives do not simply pass, they race past, leaving our dreams and hopes spinning in the dust like a license plate in a bad movie scene.
It's no wonder we ask the question, "Why bother?" In fact the most amazing thing is that we bother at all. It is the highest testament to the human spirit that those of us with this disease don't simply give up at the first opportunity. I know we all, or almost all, think about it daily, if not hourly, depending on our condition. I, along with many other PALs I talk to, constantly weigh the balance of our lives, wondering if we should continue, living with the pressure of death. Yet onward we go, unable to quench our desire to live and our hope for tomorrow.
I don't know why I bother. I just do. As my online friend said while describing a particularly difficult moment in his day, a day spent hacking up phlegm, unable to moving, trapped in his bed; "...tomorrow there be small beautiful moments, but I just wanted it over during that (difficult) stint... I have this feeling that I have to see it through to the end otherwise I would take myself out. I have no heaven or hell fears, but it feels like a challenge in a weird way."
Monday, 25 November 2013
Chinook
My weekend adventure is over. Once again I am back in my little apartment, looking out over the parking lot and mall across the street. Once again my life has moved from fairy tale to reality, with household chores and busy tasks lined up for me to attend. Once again I am living my daily life having traded the silence of the surrounding forest for the hum of traffic, and the chatter of surrounding friends for the silence of my living room.
It's not that being here is bad. In fact living here in my apartment is a good thing for me. It is well situated for my life needs, well placed in terms of daily activity. The stores I need are across the street or nearby. I can get there with my power wheelchair when necessary. Access to the building is simple and easy, with ready parking at hand and completely undercover, a must have here in Calgary for someone in a wheelchair. Things are alive around me, just differently alive than the woods and trees that I love so.
The scene here is ever changing too. It moves from day to day, snow to sun, blue sky to grey. When the Chinooks roll in over the Rockies, driving warmth before them in westerly winds, causing the temperatures to shoot up from below freezing to almost springlike, the snows melt and the grass shows through. Then, only a day or two later, the snows return and winter is once again ensconced in my world. These changing scenes, the ever moving vista of life around me, once again reminds me that life is a busy, active thing. Like that life, I need to be busy and active.
I need to do something with my life; I am not yet finished with it. I have more to accomplish, more to change, more lives and people to impact. My work here is not yet done, yet the very effort of it wears upon me moreso than one might expect. This disease is aging me early, forcing the impact of failing life forces into me, stealing away my ability to have my body do what my mind would will. Like the forests sleeping under the winter snow, somewhere deep inside me there is yet life. Like the Chinook over the mountain, all it needs is the smallest warmth to bring it forth, to let it be nourished.
ALS steals my Chinook. ALS is winter, never to be followed by spring. ALS is the unchanging, unremitting march of a destiny too soon for me. I am not done yet, no matter what this disease does to me. Listen to me! I am still here!
It's not that being here is bad. In fact living here in my apartment is a good thing for me. It is well situated for my life needs, well placed in terms of daily activity. The stores I need are across the street or nearby. I can get there with my power wheelchair when necessary. Access to the building is simple and easy, with ready parking at hand and completely undercover, a must have here in Calgary for someone in a wheelchair. Things are alive around me, just differently alive than the woods and trees that I love so.
The scene here is ever changing too. It moves from day to day, snow to sun, blue sky to grey. When the Chinooks roll in over the Rockies, driving warmth before them in westerly winds, causing the temperatures to shoot up from below freezing to almost springlike, the snows melt and the grass shows through. Then, only a day or two later, the snows return and winter is once again ensconced in my world. These changing scenes, the ever moving vista of life around me, once again reminds me that life is a busy, active thing. Like that life, I need to be busy and active.
I need to do something with my life; I am not yet finished with it. I have more to accomplish, more to change, more lives and people to impact. My work here is not yet done, yet the very effort of it wears upon me moreso than one might expect. This disease is aging me early, forcing the impact of failing life forces into me, stealing away my ability to have my body do what my mind would will. Like the forests sleeping under the winter snow, somewhere deep inside me there is yet life. Like the Chinook over the mountain, all it needs is the smallest warmth to bring it forth, to let it be nourished.
ALS steals my Chinook. ALS is winter, never to be followed by spring. ALS is the unchanging, unremitting march of a destiny too soon for me. I am not done yet, no matter what this disease does to me. Listen to me! I am still here!
Sunday, 24 November 2013
Perhaps
Sunday brunch is done. Once again the clatter and chatter in the kitchen brings life to the day. Food, central to all human activity, draws us together as we share this time and this place. Topics around the kitchen counter and bar cover everything from how to cut an onion without tears to whether or not the US/Iran Nuclear Treaty makes sense and what Israel might do. As tasks get distributed the conversation focuses, people want to work together, to share what needs to be done, to be with one another.
The sunbeams force their wanton warmth in through the giant easterly faced windows lining the living room, crossing the outer deck, melting the snow and ice on the railings and floor. That same warmth comes in, equally warming the inside wooden floor as the outside, hot enough to create a post-prandial need for sleep. Tonny marches past, checking to see that I am making my "daily update". Elizabeth checks to see if it is acceptable to put garlic in the barbeque ribs. Mike, Dan and Andrea all stand by, ready to take instructions and help where help is needed. Dion extends breakfast with one of the many cookies he made and brought for all to share, wandering out to get more wood for the squat and square woodstove standing beside me.
We know that others will be with us today, friends coming up from Calgary to spend an afternoon or evening eating the more than ample meals we create, watching the Grey Cup, lounging in the hot tub, playing pool, just visiting. It is a kind of gift, this time we get to spend with one another, this time that seems so endless yet so limited. It is largess conferred upon us simply by this place and time, it is a moment bestowed, once given never to be given again.
Outside the cold wind rushes by, shoving the trees to and fro, creating a dance in the forest abounding on these wooded hillsides. Occasionally a door will open as someone comes and goes, letting in a rush of chill soon pushed back by the warmth of the stove, the sun through the window, the people around us. Perhaps this is the greatest warmth of all, to be with those we love, with those who care, with those who will accept us for who we are, where we are, without judgement or measure. Perhaps human warmth is the only true comfort. Perhaps.
The sunbeams force their wanton warmth in through the giant easterly faced windows lining the living room, crossing the outer deck, melting the snow and ice on the railings and floor. That same warmth comes in, equally warming the inside wooden floor as the outside, hot enough to create a post-prandial need for sleep. Tonny marches past, checking to see that I am making my "daily update". Elizabeth checks to see if it is acceptable to put garlic in the barbeque ribs. Mike, Dan and Andrea all stand by, ready to take instructions and help where help is needed. Dion extends breakfast with one of the many cookies he made and brought for all to share, wandering out to get more wood for the squat and square woodstove standing beside me.
We know that others will be with us today, friends coming up from Calgary to spend an afternoon or evening eating the more than ample meals we create, watching the Grey Cup, lounging in the hot tub, playing pool, just visiting. It is a kind of gift, this time we get to spend with one another, this time that seems so endless yet so limited. It is largess conferred upon us simply by this place and time, it is a moment bestowed, once given never to be given again.
Outside the cold wind rushes by, shoving the trees to and fro, creating a dance in the forest abounding on these wooded hillsides. Occasionally a door will open as someone comes and goes, letting in a rush of chill soon pushed back by the warmth of the stove, the sun through the window, the people around us. Perhaps this is the greatest warmth of all, to be with those we love, with those who care, with those who will accept us for who we are, where we are, without judgement or measure. Perhaps human warmth is the only true comfort. Perhaps.
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