I was diagnosed with ALS in July 2021. It was truly a life-changing event. After living most of my adult life pursuing professional ambition, I was forced to look at things differently. In my “ambition mode,” there was always another day in which I could try to fulfill my ambitions. In ” ALS mode” I have had to recognize that death comes to us all. For some it is instant and for some, it’s a long slow farewell. It is a strange transition to step out of fantasy and be confronted by unavoidable reality.
So I have had to begin to try to understand what was the point of everything that came before this diagnosis. Without a doubt, everything that came before did have a purpose. I didn’t necessarily understand the purpose in the moment, but now I can see that there are much greater powers at work in the world: shaping and forming human events towards meaning.
One of the great purposes that we can be involved in is helping others to live and to come to know their own meaning. I suspect that many of my other co-patients with ALS have very similar considerations. For me, the Walk for ALS is an opportunity to devote my most vital resource, Time, toward creating hope and greater meaning for people like me and for the people who love them. Thank you for showing interest in this momentous effort.
I was diagnosed with ALS in July 2021. It was truly a life-changing event. After living most of my adult life pursuing professional ambition, I was forced to look at things differently. In my “ambition mode,” there was always another day in which I could try to fulfill my ambitions. In ” ALS mode” I have had to recognize that death comes to us all. For some it is instant and for some, it’s a long slow farewell. It is a strange transition to step out of fantasy and be confronted by unavoidable reality.
So I have had to begin to try to understand what was the point of everything that came before this diagnosis. Without a doubt, everything that came before did have a purpose. I didn’t necessarily understand the purpose in the moment, but now I can see that there are much greater powers at work in the world: shaping and forming human events towards meaning.
One of the great purposes that we can be involved in is helping others to live and to come to know their own meaning. I suspect that many of my other co-patients with ALS have very similar considerations. For me, the Walk for ALS is an opportunity to devote my most vital resource, Time, toward creating hope and greater meaning for people like me and for the people who love them. Thank you for showing interest in this momentous effort.
This is not an ordinary story about ALS. My husband not only died of ALS, but his first wife died of this horrible disease as well. What are the chances of a husband and wife dying from this horrific condition? In 2019 when my husband Vince started falling, we never thought of ALS, or that it could invade his life again. Diagnosed in December 2019, he knew the future was “a death sentence.” Vince passed away October 2020.
This disease is rapid, it has no respect of age or sex. Every month brought a new challenge, a new problem, a new condition. Vince was 79. He thought at that age he couldn’t get the disease.
Government officials: this can happen to you, your loved one, or your family. It will touch you in some way. Today it’s finally getting diagnosed a little quicker, but not fast enough. Many times it’s too late to get help to families and patients who need the help and resources.
Our living room became a hospital room with me, his wife, caring for Vince 24 hours a day. I am very grateful for hospice who became my lifeline when I didn’t know what to do, along with the ALS Association helping me understand every step.
Funding needs to continue for research, doctors and medical groups. Please think of it as one of your own being saved from this horrible disease.
This is not an ordinary story about ALS. My husband not only died of ALS, but his first wife died of this horrible disease as well. What are the chances of a husband and wife dying from this horrific condition? In 2019 when my husband Vince started falling, we never thought of ALS, or that it could invade his life again. Diagnosed in December 2019, he knew the future was “a death sentence.” Vince passed away October 2020.
This disease is rapid, it has no respect of age or sex. Every month brought a new challenge, a new problem, a new condition. Vince was 79. He thought at that age he couldn’t get the disease.
Government officials: this can happen to you, your loved one, or your family. It will touch you in some way. Today it’s finally getting diagnosed a little quicker, but not fast enough. Many times it’s too late to get help to families and patients who need the help and resources.
Our living room became a hospital room with me, his wife, caring for Vince 24 hours a day. I am very grateful for hospice who became my lifeline when I didn’t know what to do, along with the ALS Association helping me understand every step.
Funding needs to continue for research, doctors and medical groups. Please think of it as one of your own being saved from this horrible disease.
It took several years to diagnose that my husband has ALS. He has been doing infusions for 2 years. The future is bleak as he will never get better. He is currently weak, tired, has shortness of breath, trouble walking long distances, and has no appetite. The infusions are his only hope. We are trying additional medications that cost us $4,000 a month. We are not sure if we can continue with the meds due to the cost of the co-pay. We pray for additional awareness and funding.
It took several years to diagnose that my husband has ALS. He has been doing infusions for 2 years. The future is bleak as he will never get better. He is currently weak, tired, has shortness of breath, trouble walking long distances, and has no appetite. The infusions are his only hope. We are trying additional medications that cost us $4,000 a month. We are not sure if we can continue with the meds due to the cost of the co-pay. We pray for additional awareness and funding.
Our family was functioning, more or less, when ALS came calling 28 years ago. There were eight of us: a dad, a mom, and six adult sons when mom got sick. We know now that we were ill-equipped to take on the coming challenges. Mom, the hub of our family, quickly weakened. The wheel collapsed, violently. Some of us retreated, but those who stayed, argued and competed over the right choices. Dad, married in the 50’s was a strong man, but a poor caretaker.
Our response to ALS was not the picture you see of people smiling through the pain but ultimately cooperating for the greater good. It was a dark time and Mom’s death was a relief that she would be out of pain. Sometimes even a good family is not enough in this battle.
Since then, three of Mom’s siblings have succumbed to the disease. And, two recent deaths of Mom’s sons are suspect. We now live in fear for ourselves and our children. We try to project optimism even as the truth stalks us.
Many deserve our advocacy, especially those facing ALS. Every contact with those holding the levers of power is an act of hope, worthy of our time.
Our family was functioning, more or less, when ALS came calling 28 years ago. There were eight of us: a dad, a mom, and six adult sons when mom got sick. We know now that we were ill-equipped to take on the coming challenges. Mom, the hub of our family, quickly weakened. The wheel collapsed, violently. Some of us retreated, but those who stayed, argued and competed over the right choices. Dad, married in the 50’s was a strong man, but a poor caretaker.
Our response to ALS was not the picture you see of people smiling through the pain but ultimately cooperating for the greater good. It was a dark time and Mom’s death was a relief that she would be out of pain. Sometimes even a good family is not enough in this battle.
Since then, three of Mom’s siblings have succumbed to the disease. And, two recent deaths of Mom’s sons are suspect. We now live in fear for ourselves and our children. We try to project optimism even as the truth stalks us.
Many deserve our advocacy, especially those facing ALS. Every contact with those holding the levers of power is an act of hope, worthy of our time.