WildThumper6
New member
I’d like to share my story with you, but I’ll give a peek at the ending up front: I’m going to ask you to help beat ALS. I’m going to point you in the direction of a very legitimate, recognized organization that receives funding through MDA (you know, Jerry’s Kids) as well as other sources. I support that one personally but will also point you to others as well.
The reason I am writing this over two years after I was told (again) that I have BFS is that I recently attended the annual meeting of the organization to which I will refer (ALS Therapy Development Institute), where I once again heard it said that people with ALS and their families only have each other.
I can understand that. Like most people, I had heard of but knew nothing about Lou Gehrig’s Disease that Sunday evening about 20 years ago when my thumb started twitching. At the time I was working with a neurologist who was an epilepsy specialist, and I asked him about it. He looked at it and said “Oh, that’s just a fasciculation; nothing to worry about.” This was before the Web, but I had a handy dandy medical school library nearby, where I looked up the new word I just heard.
You all know what happened next and continued on for about six months until I finally got a clean bill of health via an EMG. Soon thereafter the fasciculations lessened and then disappeared, I weaned off antidepressants, and life went on. I walked in a charity event for someone not so fortunate, and I gave regularly to MDA. But I didn’t do much else. It wasn’t just that I wanted to put my experience behind me; it was also that there wasn’t much else to do. ALS was just as much a mystery in the late 1980s as it had ever been, and there was nowhere to go to help.
Trout season, spring of 2005, and I hauled in a beauty one morning. Cleaning it in the backyard a few hours later, I held it out at arms length, and my arm started shaking like a leaf. I remembered that I’d been told I had a tremor, but I never really noticed it anywhere near this magnitude. I freaked for a while, but after it subsided I forgot about it. A week later I went on a ski trip, and after I returned my lower left leg ached like hell for over a week. And then I felt something I hadn’t remembered feeling for years – a twitch. And then another one. And another one. This time with tremors, muscle aches, and the ripe old age of 50.
They’ve never stopped. Brisk reflexes and a bright spot on the MRI made me more nervous than I can put to words here, but two trips to a neurologist who simply could find nothing remarkable eased my concern enough to get back on with living. But this time around I had the Web…
I found this site while I was awaiting the visit to the neurologist, and this helped me get through the day. I came here for reassurance and always found it, but I was emotionally paralyzed within hours by the recurring “What if… ?!?!” I began looking at ALS sites as well, and what I found was the only real answer there ultimately is: hope. I began to plot my strategy to deal with ALS if I happened to be one of the unfortunate 15 people in the US told daily that they have amyotrophic lateral sclerosis.
I came across a web site and story about the Heywood family and the foundation they had built when 29 year old Stephen was diagnosed. From the ALS TDI website:
“In December of 1998, Stephen Heywood was diagnosed with Amyotrophic Lateral Sclerosis, also known as ALS or Lou Gehrig's disease. The prognosis was devastating: Stephen would experience a rapidly progressive paralysis that doctors could neither explain nor cure, leaving him a prisoner in his own body. Unable to walk, speak, or even breathe independently, Stephen would die of respiratory failure within five years…
“In a race against time to save his brother Stephen's life, James Heywood left his position as Director of Technology Development at the Neuroscience Institute and, with the support of his family and friends, founded the world's first ALS-focused nonprofit biotechnology company from his parent's basement in a Boston suburb…
ALS TDI operates out of a high-tech research facility where a dedicated team of researchers and staff search each day for a treatment and cure on behalf of all of today's ALS patients.
In 2007 ALS TDF became The ALS Therapy Development Institute and intensified its research program made possible in large part due to a grant awarded by the Muscular Dystrophy Association’s Augie’s Quest. This grant, the single largest of its kind ever awarded by the MDA, together with the continued support of hundreds of ALS patients and their families worldwide, continues to enable ALS TDI to ramp up its research program substantially.
Eight years later, one man's personal tragedy now provides hope for thousands of people suffering from ALS and points to new possibilities for fighting other neurological disorders.”
See for yourself:
I did. By the time I got around to visiting TDI (then TDF), I had already been told that I did not have ALS. I had learned of a lot of incredible work that was making real progress at understanding the disease by groups sponsored by MDA, Project ALS, and ALSA. A high-powered research consortium was founded at Johns Hopkins. But I chose to start with TDI for the simple reason that I lived less than 20 minutes away. I learned they were having a gathering of their community of patients and researchers, and I invited myself.
But why walk in on a TDI event at all? The simple answer is because I could, and not just physically. The reason that that there was no TDI or anything like it to walk into as recently as twenty years ago was the science and technology weren’t there. And I ought to know, because at that time I was already 10 years into my biomedical engineering career. Twenty years later, and I know that the technology is getting to where it needs to be.
The first person my wife and I met was Kim Julian; had I been a golfer I might have known that her husband Jeff had recently lost his battle with ALS. I was to learn that Jeff Julian, a PGA golfer, had teamed with Hall-of-Fame golfer Tom Watson and his caddy Bruce Edwards, who also battled ALS, to found “Driving 4 Life” to raise awareness and money to beat ALS.
(Note: You will often see the number “4” inserted for the word “for” in ALS circles. Lou Gehrig’s uniform number was, of course, “4”)
Kim got us some wine and introduced us to this firebrand of a human being whose name I at first didn’t catch but soon figured out was Jamie Heywood. I got a good dose of his vision and a glimpse at his leadership, but I was more taken by the space and its feel. I knew I had walked into the place that was going to lead the way to finding the cure for ALS. I knew it then, and I know it now.
In the last two years, I have met some of the most incredible people I have ever met in my life. I had the privilege of spending a day around Stephen, although I never got to talk with him. Because of technology, believe me, he could and would talk as well as take nourishment and breathe. He was funny and as engaged as anyone else through meetings, speeches, ceremonies, dinner, and a movie. Sadly, we lost Stephen just a few months later. I have met other patients as well, some quite young with young children. Like Stephen and Wendy, many families choose to have children after diagnosis. They know that tragedy isn’t in dying; it’s in not living.
I have had the privilege of working with a nurse who travels the country advising families coming to terms with living with ALS. I go to lunch every so often with a member of the research team who has become a friend. I get to hear about and celebrate every small victory and am not only hopeful but also optimistic that I will live to see the breakthrough. In fact, I will not be at all surprised to see it happen in the next ten if not five years.
But I also see the sadness of losses. Stephen’s was public and therefore visible, but there have been others that have left their mark. You meet someone, you talk for five or so minutes, some months you hear they’re gone, and there’s the very real feeling of emptiness again. Or you go to a meeting one year and stand with someone to talk, and the next year the person is in a wheelchair.
But nothing – nothing – prepared me for the families. I do not know why I was surprised. After all, I’m a Christian, and part of our textbook spiel is to love one another. I’m also married and remember saying something about “in sickness and in health”. I do not see the families in private, and I know they must have more than their share of sad, dark moments, but in public what I experience is just families going about the business og living their lives, adjusting as they must. The late stages are as demanding as you imagine and more; I’ve seen it. But not only life goes on; living does as well. Perhaps Bon Jovi said it best:
It's my life And it's now or never I ain't gonna live forever I just want to live while I'm alive
So what’s this have to do with you?
Let me begin to answer that by rephrasing: So what’s this have to do with us? I, too, live with BFS. I know the fear of ALS all too well. I’ve been there.
But I also know the ALS community from the outside looking in, and while my help is certainly welcome there, I hear all too clearly the frustration in the message “people with ALS and their families only have each other.”
For all practical purposes, they’re right. And that’s wrong. If anyone else in the world knows how lonely and frightening the mere possibility of ALS feels, it is the BFS community. It should therefore be self-evident to anyone who posts on this board that they are particularly called to respond to the loneliness felt by the ALS community. We are the only people who have had even a glimpse of the hell that is life with ALS. And you need to know that, as someone who has seen it with his own eyes, they form an outpost of Heaven in that hell. Love is present where they are.
I am not being critical but only direct and honest. What I see on this board are good people who know what it’s like to be petrified at the thought of physically being petrified (I know I do). But we need to see beyond the fear and not just give in to it. ALS is not spelled *** or ---; it is spelled ALS. I often call it a rat-bastard, but I don’t like dignifying it through personification. The enemy is not ALS but rather fear of ALS. As always, we have nothing to fear but fear itself. When we get past that, we will marshal sufficient will and resources to beat the rat-bastard. Currently the ALS community has its hands filled living with the disease; it needs help with taking care of things like slowing its progression, bringing it to a halt, and ultimately curing it.
There are far more people with BFS than ALS. We can make a, if not the, difference. It simply comes down to caring enough to act.
As I mentioned above, I am a Christian. Over the years I’ve boiled down theology to a couple simple things that I suspect I would find in all faiths. One is that each of us has to squarely face the question “Am I my brother’s keeper?” Another is that in the face of all the fury that hell has to offer (ALS is not the only disease; children get cancer, or die in war, or on the streets; and so on), with each of us knowing our ultimate physical fate, with all the things that consciously or otherwise serve to tear us apart, God has left us with the antidote. It is made up of some of the most imperfect ingredients, but when mixed together it is the only thing that ever has and will ever make a difference in the battles that matter, and will in fact prevail over Hell itself if we let it. What is the secret sauce that God has left us with? Simply this:
Each other.
Please consider making a donation to TDI. However small, it will communicate that they’re right that they only have each other, but they will be hearterned to learn just how many people each other includes. Consider becoming a member if you can make the stretch. Or give to your local MDA or ALSA chapter. Or “Extra Hands” (). Or any ALS charity in your community.
People with BFS, quite frankly, can help turn the key. Stephen Heywood first noticed something was wrong when he couldn’t turn a key one day, and he’s not here to turn them anymore. We are.
It is Thanksgiving.
Please give.
Thanks.
The reason I am writing this over two years after I was told (again) that I have BFS is that I recently attended the annual meeting of the organization to which I will refer (ALS Therapy Development Institute), where I once again heard it said that people with ALS and their families only have each other.
I can understand that. Like most people, I had heard of but knew nothing about Lou Gehrig’s Disease that Sunday evening about 20 years ago when my thumb started twitching. At the time I was working with a neurologist who was an epilepsy specialist, and I asked him about it. He looked at it and said “Oh, that’s just a fasciculation; nothing to worry about.” This was before the Web, but I had a handy dandy medical school library nearby, where I looked up the new word I just heard.
You all know what happened next and continued on for about six months until I finally got a clean bill of health via an EMG. Soon thereafter the fasciculations lessened and then disappeared, I weaned off antidepressants, and life went on. I walked in a charity event for someone not so fortunate, and I gave regularly to MDA. But I didn’t do much else. It wasn’t just that I wanted to put my experience behind me; it was also that there wasn’t much else to do. ALS was just as much a mystery in the late 1980s as it had ever been, and there was nowhere to go to help.
Trout season, spring of 2005, and I hauled in a beauty one morning. Cleaning it in the backyard a few hours later, I held it out at arms length, and my arm started shaking like a leaf. I remembered that I’d been told I had a tremor, but I never really noticed it anywhere near this magnitude. I freaked for a while, but after it subsided I forgot about it. A week later I went on a ski trip, and after I returned my lower left leg ached like hell for over a week. And then I felt something I hadn’t remembered feeling for years – a twitch. And then another one. And another one. This time with tremors, muscle aches, and the ripe old age of 50.
They’ve never stopped. Brisk reflexes and a bright spot on the MRI made me more nervous than I can put to words here, but two trips to a neurologist who simply could find nothing remarkable eased my concern enough to get back on with living. But this time around I had the Web…
I found this site while I was awaiting the visit to the neurologist, and this helped me get through the day. I came here for reassurance and always found it, but I was emotionally paralyzed within hours by the recurring “What if… ?!?!” I began looking at ALS sites as well, and what I found was the only real answer there ultimately is: hope. I began to plot my strategy to deal with ALS if I happened to be one of the unfortunate 15 people in the US told daily that they have amyotrophic lateral sclerosis.
I came across a web site and story about the Heywood family and the foundation they had built when 29 year old Stephen was diagnosed. From the ALS TDI website:
“In December of 1998, Stephen Heywood was diagnosed with Amyotrophic Lateral Sclerosis, also known as ALS or Lou Gehrig's disease. The prognosis was devastating: Stephen would experience a rapidly progressive paralysis that doctors could neither explain nor cure, leaving him a prisoner in his own body. Unable to walk, speak, or even breathe independently, Stephen would die of respiratory failure within five years…
“In a race against time to save his brother Stephen's life, James Heywood left his position as Director of Technology Development at the Neuroscience Institute and, with the support of his family and friends, founded the world's first ALS-focused nonprofit biotechnology company from his parent's basement in a Boston suburb…
ALS TDI operates out of a high-tech research facility where a dedicated team of researchers and staff search each day for a treatment and cure on behalf of all of today's ALS patients.
In 2007 ALS TDF became The ALS Therapy Development Institute and intensified its research program made possible in large part due to a grant awarded by the Muscular Dystrophy Association’s Augie’s Quest. This grant, the single largest of its kind ever awarded by the MDA, together with the continued support of hundreds of ALS patients and their families worldwide, continues to enable ALS TDI to ramp up its research program substantially.
Eight years later, one man's personal tragedy now provides hope for thousands of people suffering from ALS and points to new possibilities for fighting other neurological disorders.”
See for yourself:
I did. By the time I got around to visiting TDI (then TDF), I had already been told that I did not have ALS. I had learned of a lot of incredible work that was making real progress at understanding the disease by groups sponsored by MDA, Project ALS, and ALSA. A high-powered research consortium was founded at Johns Hopkins. But I chose to start with TDI for the simple reason that I lived less than 20 minutes away. I learned they were having a gathering of their community of patients and researchers, and I invited myself.
But why walk in on a TDI event at all? The simple answer is because I could, and not just physically. The reason that that there was no TDI or anything like it to walk into as recently as twenty years ago was the science and technology weren’t there. And I ought to know, because at that time I was already 10 years into my biomedical engineering career. Twenty years later, and I know that the technology is getting to where it needs to be.
The first person my wife and I met was Kim Julian; had I been a golfer I might have known that her husband Jeff had recently lost his battle with ALS. I was to learn that Jeff Julian, a PGA golfer, had teamed with Hall-of-Fame golfer Tom Watson and his caddy Bruce Edwards, who also battled ALS, to found “Driving 4 Life” to raise awareness and money to beat ALS.
(Note: You will often see the number “4” inserted for the word “for” in ALS circles. Lou Gehrig’s uniform number was, of course, “4”)
Kim got us some wine and introduced us to this firebrand of a human being whose name I at first didn’t catch but soon figured out was Jamie Heywood. I got a good dose of his vision and a glimpse at his leadership, but I was more taken by the space and its feel. I knew I had walked into the place that was going to lead the way to finding the cure for ALS. I knew it then, and I know it now.
In the last two years, I have met some of the most incredible people I have ever met in my life. I had the privilege of spending a day around Stephen, although I never got to talk with him. Because of technology, believe me, he could and would talk as well as take nourishment and breathe. He was funny and as engaged as anyone else through meetings, speeches, ceremonies, dinner, and a movie. Sadly, we lost Stephen just a few months later. I have met other patients as well, some quite young with young children. Like Stephen and Wendy, many families choose to have children after diagnosis. They know that tragedy isn’t in dying; it’s in not living.
I have had the privilege of working with a nurse who travels the country advising families coming to terms with living with ALS. I go to lunch every so often with a member of the research team who has become a friend. I get to hear about and celebrate every small victory and am not only hopeful but also optimistic that I will live to see the breakthrough. In fact, I will not be at all surprised to see it happen in the next ten if not five years.
But I also see the sadness of losses. Stephen’s was public and therefore visible, but there have been others that have left their mark. You meet someone, you talk for five or so minutes, some months you hear they’re gone, and there’s the very real feeling of emptiness again. Or you go to a meeting one year and stand with someone to talk, and the next year the person is in a wheelchair.
But nothing – nothing – prepared me for the families. I do not know why I was surprised. After all, I’m a Christian, and part of our textbook spiel is to love one another. I’m also married and remember saying something about “in sickness and in health”. I do not see the families in private, and I know they must have more than their share of sad, dark moments, but in public what I experience is just families going about the business og living their lives, adjusting as they must. The late stages are as demanding as you imagine and more; I’ve seen it. But not only life goes on; living does as well. Perhaps Bon Jovi said it best:
It's my life And it's now or never I ain't gonna live forever I just want to live while I'm alive
So what’s this have to do with you?
Let me begin to answer that by rephrasing: So what’s this have to do with us? I, too, live with BFS. I know the fear of ALS all too well. I’ve been there.
But I also know the ALS community from the outside looking in, and while my help is certainly welcome there, I hear all too clearly the frustration in the message “people with ALS and their families only have each other.”
For all practical purposes, they’re right. And that’s wrong. If anyone else in the world knows how lonely and frightening the mere possibility of ALS feels, it is the BFS community. It should therefore be self-evident to anyone who posts on this board that they are particularly called to respond to the loneliness felt by the ALS community. We are the only people who have had even a glimpse of the hell that is life with ALS. And you need to know that, as someone who has seen it with his own eyes, they form an outpost of Heaven in that hell. Love is present where they are.
I am not being critical but only direct and honest. What I see on this board are good people who know what it’s like to be petrified at the thought of physically being petrified (I know I do). But we need to see beyond the fear and not just give in to it. ALS is not spelled *** or ---; it is spelled ALS. I often call it a rat-bastard, but I don’t like dignifying it through personification. The enemy is not ALS but rather fear of ALS. As always, we have nothing to fear but fear itself. When we get past that, we will marshal sufficient will and resources to beat the rat-bastard. Currently the ALS community has its hands filled living with the disease; it needs help with taking care of things like slowing its progression, bringing it to a halt, and ultimately curing it.
There are far more people with BFS than ALS. We can make a, if not the, difference. It simply comes down to caring enough to act.
As I mentioned above, I am a Christian. Over the years I’ve boiled down theology to a couple simple things that I suspect I would find in all faiths. One is that each of us has to squarely face the question “Am I my brother’s keeper?” Another is that in the face of all the fury that hell has to offer (ALS is not the only disease; children get cancer, or die in war, or on the streets; and so on), with each of us knowing our ultimate physical fate, with all the things that consciously or otherwise serve to tear us apart, God has left us with the antidote. It is made up of some of the most imperfect ingredients, but when mixed together it is the only thing that ever has and will ever make a difference in the battles that matter, and will in fact prevail over Hell itself if we let it. What is the secret sauce that God has left us with? Simply this:
Each other.
Please consider making a donation to TDI. However small, it will communicate that they’re right that they only have each other, but they will be hearterned to learn just how many people each other includes. Consider becoming a member if you can make the stretch. Or give to your local MDA or ALSA chapter. Or “Extra Hands” (). Or any ALS charity in your community.
People with BFS, quite frankly, can help turn the key. Stephen Heywood first noticed something was wrong when he couldn’t turn a key one day, and he’s not here to turn them anymore. We are.
It is Thanksgiving.
Please give.
Thanks.