Amyotrophic lateral sclerosis, or A.L.S., more kindly known as Lou Gehrig’s disease is severely debilitating illness. The nerves and muscles pulse and twitch, and progressively, they die. It starts in the hands and feet and works its way up and in, or it begins in the muscles of the mouth and throat and chest and abdomen, and works its way down and out. The second way is called bulbar. Patients don’t live as long, because it affects their ability to breathe early on, and it just gets worse.
Prognosis:
DUDLEY CLENDINENA has shared recently his own struggle in interview published recently in The New York Times. His testimony serves those patients who struggle with their decision to take a medication that prolongs some life quality for a few months (like with many cancer patients) or to accept its course to die peacefully.
In his own words "There is no meaningful treatment. No cure. There is one medication, Rilutek, which might make a few months’ difference. It retails for about $14,000 a year. That doesn’t seem worthwhile to me. If I let this run the whole course, with all the human, medical, technological and loving support I will start to need just months from now, it will leave me, in 5 or 8 or 12 or more years, a conscious but motionless, mute, withered, incontinent mummy of my former self. Maintained by feeding and waste tubes, breathing and suctioning machines. No, thank you. I hate being a drag. I don’t think I’ll stick around for the back half of Lou.
I think it’s important to say that. We obsess in this country about how to eat and dress and drink, about finding a job and a mate. About having sex and children. About how to live. But we don’t talk about how to die. We act as if facing death weren’t one of life’s greatest, most absorbing thrills and challenges.
Prognosis:
DUDLEY CLENDINENA has shared recently his own struggle in interview published recently in The New York Times. His testimony serves those patients who struggle with their decision to take a medication that prolongs some life quality for a few months (like with many cancer patients) or to accept its course to die peacefully.
In his own words "There is no meaningful treatment. No cure. There is one medication, Rilutek, which might make a few months’ difference. It retails for about $14,000 a year. That doesn’t seem worthwhile to me. If I let this run the whole course, with all the human, medical, technological and loving support I will start to need just months from now, it will leave me, in 5 or 8 or 12 or more years, a conscious but motionless, mute, withered, incontinent mummy of my former self. Maintained by feeding and waste tubes, breathing and suctioning machines. No, thank you. I hate being a drag. I don’t think I’ll stick around for the back half of Lou.
I think it’s important to say that. We obsess in this country about how to eat and dress and drink, about finding a job and a mate. About having sex and children. About how to live. But we don’t talk about how to die. We act as if facing death weren’t one of life’s greatest, most absorbing thrills and challenges.
