Atsugi
Moderator emeritus
- Joined
- Jan 11, 2011
- Messages
- 5,921
- Reason
- Lost a loved one
- Diagnosis
- 12/2010
- Country
- US
- State
- FL
- City
- Orlando
I copied some statements (below) about life expectancy. Here’s what I think I know from the doctors and from helping my wife as she progressed:
In ALS, death usually comes from impaired breathing, especially aspiration pneumonia due to swallowing problems. If the patient lives long enough, paralysis of the expiratory muscles will allow CO2 to build up, so the patient sleeps longer and eventually the organs fail. Morphine prevents the sensation of air hunger and the anxiety associated with that.
For planning purposes, I wonder how useful these stats are. Many factors apply to each individual case. For instance:
- A trache and a PEG will help an ALS patient live longer, but will not slow the progress of paralysis.
- Bulbar onset patients tend to have shorter life expectancy.
- Young ALS patients tend to live longer.
- Familial ALS “usually” kills within one to two years after symptoms appear.
- If Riluzole is prescribed early and taken continuously, it delays the onset of ventilator-dependence or tracheostomy and may increase survival by approximately two to three months.
Watching my wife’s rapid progress (less than one year total), I opted NOT to ask the question “How long will I live until death?” Instead, I decided to ask the question: “How long before I lose the ability to communicate because I’m locked in?”
In my wife’s case, she chose to go quickly, without any tubes. She was locked in exactly one day, but was pretty well morphined up during that day.
When my time comes, though, I might ask the question “when can I choose to die on my own terms”?
FROM ALSA.ORG: “Although the life expectancy of a person with ALS averages about two to five years from the time of diagnosis, this disease is variable, and many people can live with the disease for five years and more. More than half of all people with ALS live more than three years after diagnosis.
“Half of all those affected live at least three years or more after diagnosis. About 20 percent live five years or more, and up to ten percent will survive more than ten years.”
FROM MDA.ORG: “Each person's disease course is unique. There are a number of examples of people who are leading productive and active lives more than two decades after an ALS diagnosis.
“Standard longevity statistics citing an average survival time of three to five years after diagnosis may be somewhat out of date because changes in supportive care and technology — especially for breathing and nutrition — may help prolong life.”
FROM THE CDC: “{Most people live from 3 to 5 years after symptoms develop. How long a person lives with ALS seems to be related to age; people who are younger when the illness starts live slightly longer.
“People with familial ALS usually do not fare as well as a person with ALS who are not related, and typically live only one to two years after symptoms appear.”
FROM ALSFROMBOTHSIDES: “It is important to note that these figures are based on patients who do not go on BiPAP or a full ventilator. Patients who opt for tube feedings and a ventilator when swallowing and respiratory muscles fail can generally be maintained for many more years. Life expectancy among these patients has not been reported, but the patient's age, other health problems and the quality of nursing care available will affect life expectancy.”
In ALS, death usually comes from impaired breathing, especially aspiration pneumonia due to swallowing problems. If the patient lives long enough, paralysis of the expiratory muscles will allow CO2 to build up, so the patient sleeps longer and eventually the organs fail. Morphine prevents the sensation of air hunger and the anxiety associated with that.
For planning purposes, I wonder how useful these stats are. Many factors apply to each individual case. For instance:
- A trache and a PEG will help an ALS patient live longer, but will not slow the progress of paralysis.
- Bulbar onset patients tend to have shorter life expectancy.
- Young ALS patients tend to live longer.
- Familial ALS “usually” kills within one to two years after symptoms appear.
- If Riluzole is prescribed early and taken continuously, it delays the onset of ventilator-dependence or tracheostomy and may increase survival by approximately two to three months.
Watching my wife’s rapid progress (less than one year total), I opted NOT to ask the question “How long will I live until death?” Instead, I decided to ask the question: “How long before I lose the ability to communicate because I’m locked in?”
In my wife’s case, she chose to go quickly, without any tubes. She was locked in exactly one day, but was pretty well morphined up during that day.
When my time comes, though, I might ask the question “when can I choose to die on my own terms”?
FROM ALSA.ORG: “Although the life expectancy of a person with ALS averages about two to five years from the time of diagnosis, this disease is variable, and many people can live with the disease for five years and more. More than half of all people with ALS live more than three years after diagnosis.
“Half of all those affected live at least three years or more after diagnosis. About 20 percent live five years or more, and up to ten percent will survive more than ten years.”
FROM MDA.ORG: “Each person's disease course is unique. There are a number of examples of people who are leading productive and active lives more than two decades after an ALS diagnosis.
“Standard longevity statistics citing an average survival time of three to five years after diagnosis may be somewhat out of date because changes in supportive care and technology — especially for breathing and nutrition — may help prolong life.”
FROM THE CDC: “{Most people live from 3 to 5 years after symptoms develop. How long a person lives with ALS seems to be related to age; people who are younger when the illness starts live slightly longer.
“People with familial ALS usually do not fare as well as a person with ALS who are not related, and typically live only one to two years after symptoms appear.”
FROM ALSFROMBOTHSIDES: “It is important to note that these figures are based on patients who do not go on BiPAP or a full ventilator. Patients who opt for tube feedings and a ventilator when swallowing and respiratory muscles fail can generally be maintained for many more years. Life expectancy among these patients has not been reported, but the patient's age, other health problems and the quality of nursing care available will affect life expectancy.”