NeuroTalk Support Groups - For ALS survivor, so much more, so fast

For ALS survivor, so much more, so fast
Film draws attention, commitment to research
By Joseph P. Kahn, Globe Staff | October 31, 2006

The cameras have been turned off for two years. Gone, too, is Stephen Heywood’s ability to joke about wishing he’d had ‘‘more sex on film’’ during the shooting of a documentary about his poignant struggles with amyotrophic lateral sclerosis, or ALS.

Yet life has gone on — replete with setbacks and dashed hopes, along with moments of triumph and inspiration — for the family portrayed in ‘‘So Much So Fast,’’ now reaching theaters and winning praise for its nuanced portrait of one ALS patient and the extraordinary support network that has rallied around him.
Written and directed by Newton-based filmmakers Steven Ascher and Jeanne Jordan, ‘‘So Much So Fast’’ is screening locally at the West Newton Cinema through Nov. 9.

At the center of the documentary, shot over a period of four years, is Heywood, an MIT grad and talented home builder, who at age 29 was diagnosed with what’s commonly known as Lou Gehrig’s disease. ALS is a rapidly progressive and so far incurable neurological disease that attacks the nerve cells that govern motor control. Post-dix agnosis life expectancy is typically 3 to 5 years, although about 10 percent of ALS patients live another decade or longer.

Heywood, now 37 years old, resides with his wife, Wendy, and 6-year-old son, Alexander, in the Newton home that he helped redesign around his disability. He breathes with the aid of a ventilator and, despite experimental drug treatments and high-tech accessories that have boosted his prospects for a longer, better life, has been more or less powerless to halt the disease’s assault on his body.

He communicates through a computerized voice synthesizer that’s controlled by a wire attached to his lower forehead, just above his eye. Thanks to a tiny sensor implanted directly on his motor cortex — part of a new clinical trial called BrainGate — he’s also able to manipulate a computer cursor basically by imagining he’s moving his arm. Ascher and Jordan have filmed scenes of the procedure for inclusion in the DVD version of the film, which is expected to be released this winter.

As one sibling puts it, Heywood is ‘‘on the knife edge now’’ between being able to communicate effectively and losing even that crucial quality of life. Still, there is much to celebrate about the past few years, family members say, including Heywood’s plans to start a new home-remodeling business.

‘‘I am pleasantly surprised to say I feel great,’’ Heywood himself commented in a recent e-mail to a reporter inquiring about his condition and outlook. ‘‘More energy than I’ve had in years.’’

Among his greatest joys, he added, is watching his son grow up.

‘‘Seeing Alexander grow was magical,’’ Heywood wrote. ‘‘During construction of our house he had his own power drill.’’

Concerning his trip to the Sundance Film Festival, where ‘‘So Much So Fast’’ debuted last January, Heywood observed that ‘‘an audience is always wonderful’’ to watch the film with, ‘‘but doubly so because we had never traveled with a wheelchair or ventilator before.’’

Meanwhile, brothers Jamie, 40, and Ben, 34, say their efforts on behalf of ALS research and patient support — which make up key subplots in the film’s storyline — continue to grow in both scope and ambition.

Onscreen, Jamie’s struggles to launch and sustain an ALS research foundation provide many of the film’s most dramatic plot turns. With a background in mechanical engineering, not medicine, Jamie was an unlikely candidate — until 1999, he was director of technology development at the Neurosciences Institute in California — to launch the only nonprofit biotech lab in the world conducting ALS research. Today, leading a reporter around the Kendall Square headquarters of the ALS Therapy Development Foundation, he boasts of its recent accomplishments: more than 150 drug studies so far, expansion to nearly 40 full-time employees, a $5.8 million operating budget, support from ALS families, major drug companies, and government agencies, and a renewed sense of mission to find a cure in the foreseeable future.

‘‘I figure we have 7 to 10 years to make a real dent in this disease,’’ he says, slipping off a lab coat after touring the area where mice are housed during clinical drug trials. ‘‘And I’m not being naive this time.’’

Viewing the movie, which he has seen several times and admires a great deal for its humor and honesty, is painful for a couple of reasons, he says. Neither is the obvious one: that the film touches upon the dissolution of his marriage, which occurred midway through the filming process.

Instead, he says, ‘‘One is watching Stephen, which is always tough, because you almost forget how he sounded. How he looked back then. And two is our naivete. The question is, could we have been less naive faster? And the answer is, maybe.’’

Fifteen months ago, the foundation was nearly broke and contemplating scaling back its programs significantly. He and his partner, Sean Scott, were at a crossroads, Jamie admits. Ultimately, they decided to sign on for five more years, hire more staff, and continue testing new ideas for possible cures. A year later, the enterprise is on surer footing, although it may never succeed in helping his brother to the extent that Jamie once hoped.

‘‘This is bigger than Stephen now,’’ he says. News coverage of both the new film and recent book about the Heywoods (‘‘His Brother’s Keeper,’’ by Jonathan Weiner) tend to emphasize ‘‘how lucky Stephen is to have me for a brother,’’ Jamie says, ‘‘not that he gave me something worth fighting for.’’

Ben, 34, an MIT-trained engineer with a master’s degree in business from UCLA, gets married in one of the movie’s final scenes. Today he has an infant daughter and a new role as cofounder of Patients Like Me, an online resource for ALS patients and caregivers. Launched in March, the site now has more than 600 ALS patients and 200 caregivers as subscribers. Through it, patients can share details of their progress with others in comparable situations.

‘‘We used to joke about our family being all ALS, all the time,’’ says Ben. ‘‘This has a different feel for me. It’s not as all-consuming, but it’s incredibly exciting work.’’

Joseph P. Kahn can be reached at jkahn@globe.com.

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