San Francisco man stands up to Lou Gehrig’s disease

James Carter has a lot to say and needs every word he writes to count. That’s why he is a poet.

There was a time when the 65-year-old had the luxury of telling his life story in flowing prose, but since amyotrophic lateral sclerosis — better know as Lou Gehrig’s disease — took hold of his body, his hands can type only a few words before cramping into claws.

Lou Gehrig’s disease is a neurodegenerative disease that destroys nerves and muscles but spares the mind, leaving people such as Carter as the captains of sinking ships.

The prognosis for those with ALS is not good — 80 percent of people with the disease die within five years of diagnosis.

Carter is aware of those statistics and accepts them. But rather than resigning to a ticking clock, he has taken it on as a challenge.

“People live an average of 20,000 days — did you know that?” Carter says. “I have hundreds.”

He has a lot planned for those hundreds of days and isn’t wasting time.

A retired optometrist, Carter is working on a patent for a polymer made mostly of water. It could be made into contact lenses that are safe for sleeping, or a paint that prevents ice from crystallizing on airplane wings.

Jars of the stuff in various forms — powder, gel, liquid — clutter the desk and bookshelf in his living room.

A news program on mute glows from his television and a classical symphony plays as Carter scrolls through the 500-year family genealogy he compiled.

Then, of course, there are the poems, at least a dozen of which he’s added to a book he calls “Poems From Living-Dying.”

“He hangs in there and pushes himself as far as he can until he can’t anymore,” said Michael McGinley, Carter’s case manager through the Curry Senior Center, which provides assistance services to residents. “He’s really an exceptionally remarkable person.”

But all those aspirations are often a challenge with a body that can’t keep up.

Carter first noticed something was wrong when he kept throwing gutter balls during a bowling outing in 2008. He was diagnosed in August 2010. Now he needs help putting on pants in the morning, grows weary holding up his head and hasn’t left his first-floor apartment more than six times in the past six months because of the steps out front.

Just within the past two weeks, he lost dexterity in his index finger — an important digit for a man who is fueled as much by current events as standard meals.

That’s where McGinley comes in. Since beginning work with Carter about 10 months ago, McGinley has hooked up Carter with a program that sends a home aide to help him clean, prepare meals and get up in the morning; is getting Carter an electric wheelchair; and also has him on a list for a voice-activated computer.

A few days before Christmas, he helped Carter move out of his Tenderloin apartment. His new place, near Candlestick Park, has wheelchair access and medical resources close by.

Carter describes McGinley as his Virgil, referring to Dante’s guide and protector through the “Inferno.”

Center aids people with challenges  

The help ALS patient James Carter receives through the Curry Senior Center’s case management program is only one facet of the center’s work.

The center, founded in 1972, provides residents with a variety of services — a geriatric clinic, a social day program, a substance-abuse program, daily meals and an apartment building for chronically homeless seniors.

“We assess the needs to achieve optimal health, and assess what services and help they need to improve that,” said Michael McGinley, the center’s supervisor of case management services.

Each of the center’s five case managers works with about 45 people, whose needs range from regular check-ins to more intense care.

In Carter’s case, the Curry Senior Center has helped him maintain some degree of independence by setting him up with help for the things he can’t do on his own.

Carter came to the center as a man accustomed to independence who could no longer walk across the street without needing to lean against a lamp post to catch his breath.

Instead of taking over and infantilizing him, the center has given him the tools to be himself: raisers for his bed, a remote-controlled armchair and — hopefully soon — a voice-activated computer.

“I am blessed,” Carter said.

— Sarah Gantz

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