A powerful guest commentary by Michael Martignetti, suffering from Friedrich’s ataxia, a horrible neuromuscular degenerative disease.
Mr. Martignetti writes: “I co-founded the Ataxia Support Group in Boston in 2000, so I know the ravages of this disease, what awaits me at the end of my life, and it will not be pretty. Friedreich’s ataxia causes: 1) the spinal cord and peripheral nerves degenerate, 2) diabetes in some people, and 3) various forms of heart disease, including heart enlargement and cardiac failure. That is why I testified last September before the Massachusetts Joint Public Health Committee in favor of the End of Life Options Act (H.1194/S.1225) that lawmakers plan to reintroduce in January…. If this legislation becomes law, I do not know if I would use this end-of-life care option if my condition becomes terminal. But I do know that I would want the option to make that decision.”
He concludes, “As a person living with a disability, I want the same autonomy and freedom as anyone else to make my own healthcare decisions at the end of life.”
Read the full text, published September 28, 2018, at lexington.wickedlocal.com,