Living With ALS

May 18th, 2009

Thanks so much for your wonderfully written and sensitive article ("I Will Be Heard!" March/April). My sister is living with ALS. It is vitally important to families like ours that the world better understand this disease and the urgency we face in finding an effective treatment. Catherine Wolf '72 AM, '74 PhD has such an inspiring story, and her effort to master the wide range of adaptive technologies available is fascinating. Our very best to her and her family.

Mickey Butts '90
Berkeley, Calif.



The article "I Will Be Heard!" notes that only 5 percent of ALS patients "chose to have the surgery to connect them to a ventilator. The emotional and financial cost, to the patients and their families, is too high for most." This claim cries out for critical examination. When the financial cost of a treatment is too high for patients, this does not necessarily mean that patients choose not to pay it. Some may desperately want the treatment but simply lack the money. As for the emotional cost to families, what sort of family finds it more distressing to have a family member alive on a ventilator than dead? Why would any patient honor the preferences of such "loved ones?"

Felicia Nimue Ackerman

The writer is a professor of philosophy.

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May/June 2009