PBS Frontline: 'So Much So Fast'

Steven Ascher and Jeanne Jordan, producers of the PBS Frontline film
Steven Ascher and Jeanne Jordan, producers of the PBS Frontline film "So Much So Fast." (Courtesy of West City Films, Inc.)

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Steven Ascher and Jeanne Jordan
Producers
Wednesday, April 4, 2007; 11:00 AM

At age 29, Stephen Heywood was told by doctors that he had ALS -- also known as Lou Gehrig's Disease -- and had two to five years to live. " So Much So Fast" follows Heywood and his relatives as they react and adapt to his illness, pushing on with life and pursuing a cure.

Producers Steven Ascher and Jeanne Jordan were online Wednesday, April 4, at 11 a.m. ET to discuss their PBS Frontline film.

Frontline's " So Much So Fast" aired Tuesday, April 3, at 9 p.m. ET on PBS (check local listings).

The transcript follows.

Ascher and Jordan have been making documentary and fiction films for more than 20 years. Their first collaboration, "Troublesome Creek," won the Grand Jury Prize and Audience Award at Sundance, the Prix Italia, Peabody and IDA awards and was nominated for an Academy Award. They also have collaborated on Emmy-winning portraits of artists, including Chuck Close and Shimon Attie.

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Philadelphia: I watched the film last night on Frontline and I have many thoughts about it -- it's great, but it doesn't seem right to say that because the story is so sad. But I was wondering if you had considered using a clip of the famous Lou Gehrig speech where he acknowledges his illness and says goodbye to the world but declares that he was the luckiest man on the face of the Earth. I kept thinking of it because Stephen's life seemed so much like that speech -- yes, his illness was devastating but his spirit was so strong and his family was so tremendously resourceful that his experience with his illness seemed like it was the very best that it could have possibly been, and in that sense he seemed very lucky. But I wondered if you had considered including the speech but then rejected it because, bottom line, the story is just so sad.

Steven Ascher and Jeanne Jordan: Even though losing Stephen, and all he went through is of course sad, the family doesn't see themselves that way. They were faced with an incredible challenge and they rose to meet that with a lot of determination -- and humor. We tried hard to make a film that reflected the emotion but also the momentum, energy and wit of Stephen and the rest of the family.

We looked into using the Lou Gehrig speech, which is particularly interesting in the parts that aren't usually shown on film. Unfortunately, though there was radio coverage of the rest, only a few seconds of film survive.

Stephen often said that he was lucky, and that he was better off than millions of people in the world today.

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Barstow, Calif.: Over my 27-year career as an Occupational Therapy practitioner, I've met and worked with one person with ALS, and that was early on in my career. I've always wondered what life with ALS was like, how my profession better could help these individuals seek a quality of life, and what that could look like. I thank you for filming "So Much So Fast" and touching my life with this heartwarming story. As was said in the documentary, "we all have something that we're dealing with," and I truly thank the Heywood family and colleagues for sharing their "full" life with Stephen as he took this journey to broaden "our" perspective on "what is this all about anyway?" And, yes, Einstein was right about time! Living every day as if it were your last makes life so much more acute and valuable, as Stephen et al showed us tonight -- and as my journey through cancer continues to teach me. Kudos, Steven Archer and Jeanne Jordan!

Steven Ascher and Jeanne Jordan: Thanks for your thoughts. We really hope that the film helps people to see that people struggling with whatever -- cancer, ALS, anything -- aren't "different" or "other". Almost everyone is struggling with something, or knows someone who is. Particularly with ALS, people can assume you're not there because you can't talk. But Stephen shows you that his active mind was sharp throughout.

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Washington: Where do things stand with the Heywood family today? As documentary makers of this family experience, do you think your involvement changed the family dynamics and contributed to their story or in any way altered their relationships?

Steven Ascher and Jeanne Jordan: The Frontline.org Web site gives a lot of information about the family now. The Heywoods are obviously very strong people. We became very close to them over the four years of filming and have remained close since. As for what impact we had on them, if you've ever been filmed you know that you really stop noticing after awhile. In many ways we just became part of the large support structure that they needed to cope.

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Atlanta: Was it hard to film Stephen's life without becoming attached to everything about him and his struggles? What was your reaction personally to his death -- did you attend his funeral?

Steven Ascher and Jeanne Jordan: We became very attached to Stephen and the whole Heywood family. The kind of film we wanted to make required tremendous intimacy and trust. But it's important to remember that Stephen was a very upbeat person, and being around him and the family was always about living, doing, problem-solving and it was not depressing (as some have assumed) to be with him.

We were devastated by Stephen's death. Because it was a mechanical accident, it was not expected and Stephen was still very vibrant and engaged in life. His memorial service was deeply moving and everyone there was heartbroken to lose such a wonderful person.

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Bel Air, Md.: It was such a shock at the end of the film to learn of Stephen's death -- there seemed to be much hope when the last scenes were filmed. Can you give us more details about his death? Did the equipment just stop working?

Steven Ascher and Jeanne Jordan: Stephen's death was an accident--his respirator tube detached accidentally in the night--something that we all knew could happen and did everything possible to prevent. If you go to our Web site, somuchsofast.com, you can read the letter Jamie wrote to friends and family about Stephen's death. We are all heartbroken.

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Bethesda, Md.: Mr. Ascher and Ms. Jordan -- I want to commend you on your fascinating, educational, and ultimately heartbreaking film. Of the many compelling philosophical questions raised by the film, the one that stuck with me was the effect of Steve's son, Alex, on his life. On the one hand, he brought so much joy to Steve's life and was such a blessing, but on the other hand, the prospect of leaving his son and not being able to see him grow up clearly caused Steve incredible pain. Other than his reference to assuming that others in his condition who chose suicide must have had "grown children," did he ever directly voice any ambivalence about his decision to have a child?

Steven Ascher and Jeanne Jordan: Alex was a force driving Stephen to keep going and live as long as possible. He was tremendously proud of Alex and the entire family was thrilled that Wendy and Stephen had him. As sad as Stephen felt at the idea that he might not be there to see Alex grow up, he was unequivocal in his joy at having Alex and his pride that he'd survive him.

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Washington: Really a beautiful program -- thank you so much for making it. Not really a question, more of a comment: One of the most surprising aspects of the film for me was my reaction to Stephen's decision to go on a vent and try to live indefinitely. At first take, this might be considered to be a selfish move given the amount of work, energy, money, etc. needed for his family members to maintain him in that state. Yet the film portrayed that decision (and my reaction to it was the same) as reasoned, reasonable and in a limited way heroic. In the context of this remarkable man in this remarkable family, it seems like the right thing for him to have done, given his reliance on and reverence for technology. I'm not really sure if my comment makes sense; I guess what I'm saying is that I would expect myself to be a smidgen judgmental of what appears to be a somewhat selfish decision -- but I'm not. It clearly was the right decision for him, and maybe even the right decision for his family.

Steven Ascher and Jeanne Jordan: You're right. It was exactly the right decision for Stephen and his family. Our biggest lesson learned in making this film was that none of us know what we'd do in this extreme situation. Stephen handled every moment from diagnosis on with a grace and acceptance that we could only hope we'd possess.

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Hartford, Conn.: Thank you for your work. My mother was diagnosed with Bulbar ALS and quickly lost the ability to speak, use her right hand or walk. She passed away after refusing nourishment (a conscience decision on her part to take control of a seemingly uncontrollable degeneration). This disease needs all the attention it can garner. Again, my thanks to you.

Steven Ascher and Jeanne Jordan: Jeanne here. My mother also had bulbar onset. She did get a feeding tube but wouldn't go on a respirator when that choice had to be made. Although we were heartbroken at losing her, we respected her taking control, as your mom did, of her own destiny.

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Barto, Pa.: This was one of the best "Frontline" shows that have been aired. You are to be commended for your professionalism and your wonderful treatment of the subject. Question: Was Steven able to see the footage as you went along, and if he did see it, what editorial license did you give him and his wife?

Steven Ascher and Jeanne Jordan: Thanks so much for your kind words. None of the Heywoods saw the film until it was nearly finished. They knew from the beginning that they'd have no editorial control. We were honored that they trusted us to tell their story.

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New York: Your documentary was so moving. How did Stephen travel around in his condition? Did he fly, or was it in a special van? Did Stephen get to see your documentary edited?

Steven Ascher and Jeanne Jordan: Stephen usually traveled in a wheelchair-accessible van. The entire family came to the premiere at the Sundance film festival and they flew on Delta airlines with all sorts of backup power and supplies.

Stephen saw the film many times. He and Wendy loved to watch it and revisit the time before his symptoms became what they did. The entire family got a ten-minute standing ovation at Sundance and were cheered whenever the film was shown.

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Springfield, Mo.: What was the augmentative speech device that Steve used mounted on his wheelchair? It seemed to be very capable and useful for an adult who could use this.

Steven Ascher and Jeanne Jordan: Stephen used a program called EZ Keys, which allowed him to click (first with his hands, later with his headswitches) to write text. He used it to do instant-messaging, which was one of the best ways to communicate with him, because you could send him a message and he could respond at his own speed. As you saw in the film, the device also has a speech synthesizer that could generate spoken English after he typed in the text.

People with many different conditions can benefit from text-to-speech devices.

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Park City, Utah: Hi Steven, it's Ali Provines from Park City, Utah. I met you at the film out there (I had just lost my husband John to ALS a few weeks earlier), and just wanted to say that I'm so happy your film has aired on PBS. I didn't see much publicity about it, so I wasn't able to send it out to friends and family with much notice. Will it be aired again, and if so when?

Steven Ascher and Jeanne Jordan: Hi Ali! It will be rebroadcast this week (check your local schedule) and will be rebroadcast in years to come. Also available on DVD home video at www.somuchsofast.com and for institutions at pbs.org

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Dallas: Dear Steven and Jeanne: My mother recently was diagnosed with ALS, and it has progressed incredibly quickly, attacking her speech and her ability to eat and swallow. Your film was so heartfelt and inspiring; there was a gracefulness in that family that I only hope our family also can provide for my mother. My question is whether or not there has been any true and significant breakthroughs in halting or slowing the progression of this tragic disease -- we are holding on day by day, but feel so powerless against ALS. Thank you for your response.

Steven Ascher and Jeanne Jordan: Sorry to hear about your mother. There are many treatments being researched right now. You can get information about possible clinical trials your mother might participate in through the links at frontline.org. You may also want to register at patientslikeme.com to hear about treatments and compare notes.

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Wynnewood, Pa.: First, thanks for your work -- truly powerful. How did you hear about Stephen and his family, and how long did you expect the project to take?

Steven Ascher and Jeanne Jordan: As is described in the film, we heard about the Heywoods though a piece in the New Yorker magazine. We always knew it would take several years to tell this story the way we wanted to, but didn't really know it would be four years of shooting and another of editing. But the audience gets the benefit of that sweep of time.

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Portland, Ore.: As much as I admire the entire family, I could not avoid comparing Steve's ordeal with my wife's. In 1960 at age 22 she contracted ALS and lived -- I emphasize "lived" -- with it for 13 years. No high-tech stuff, no upper-middle-class family support, no tax dollars to help. So with all my respect for what they, and you, accomplished, I was left with a grim feeling of what the tale would have been for a poorer couple, deserted by friends and family. There are many out there, and they're largely invisible.

Steven Ascher and Jeanne Jordan: We started this film because Jeannie's mother (a farm wife in Iowa) died of ALS. Also without high-tech support, but with a lot of family love.

The Heywoods are a middle-class family (John is a college professor) who have resources that some families don't. But the insurance that provided for a lot of Stephen's care and equipment came from the state. We think it is a blessing that government and insurance can help.

It was hard for us to deal with ALS in the 1990s; we can only imagine how much harder it was to deal with in 1960.

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Washington: The program last night was quite compelling, and is another example of "Frontline's" excellent programming. I came in late, but saw the last 40 minutes or so. I was wondering how Stephen's family is doing now. How did they come up with all of the resources? We wondered about their financial health after pouring so much into ALS research and Stephen's care. Is his brother's organization still existence? Stephen's illness seemed to become the focus of the lives of everyone around him, and his rather sudden death must have been a shock. How are they doing now?

Steven Ascher and Jeanne Jordan: see the updates at frontline.org

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Richmond, Va.: I saw the film last night and was blown away. Thanks for such a touching piece. I was wondering, why did you decide to end the documentary at the point you chose to end it? The ending was very sweet and inspiring, but I would like to hear your thought process on how to wrap up a film that has no obvious ending, except for Stephen's accidental death.

Steven Ascher and Jeanne Jordan: The film was finished long before Stephen died.

We chose Ben and Sherie's wedding as an ending for many reasons. The marriages of all three brothers are in the film. It is a beginning as well as an ending. Most important, we wanted the audience to turn to their own lives, and think about their own time on earth. The film isn't really about will Stephen live or not, it's more about how we all spend the time we have. The wedding crystallized a moment that many people see as one of the key markers in their own lives.

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Washington: I caught your documentary last night after missing the first few minutes, but immediately was struck by your connection with your primary subject. You seemed to really understand him, even when his words no longer were audible. You portrayed his remarkable story in a way that let us really understand his life and its ups and downs. He was so smart, so in touch with what was going on. It had a profound effect on me, especially to see him with his son and how even at his young age, they were so connected with each other. I was completely shocked to see at the end that he had "accidentally" passed in 2006. Can you give us an update on his family -- oh, and did that carriage house ever get finished?

Steven Ascher and Jeanne Jordan: Spending time around Stephen -- or anyone who has trouble speaking -- you learn to anticipate what he's thinking, and how he expresses himself. It's particularly important for people with ALS to have people who "get" them, and know for example, to ask questions in Yes/No form, and not in open ended ways that take a long time to answer.

You can see updates at frontline.org, and if you watch the braingate video, you'll see the carriage house close to completion and looking gorgeous!

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Philadelphia: As a permanent member of the disabled community, having been born with cerebral palsy, what I have to say may come off as a bit callous, but I feel it is relevant. Disease is part of the process of living, and probably spurs evolutionary adaptation. Going to war with it, using our intelligence against it to the degree that we do, probably does the species a disservice in the long run. PBS is a bit too fond of these mortality dramas, in my estimation -- and the Heywoods are not heroes, not in my book. There are limits to medical resources we have available to treat illness, and spending thousands of dollars to cling to life just a little longer in a body that no longer had the capacity to function is unfair to humans who could be cured easily of other illnesses to go on to live productive lives. It is not fun to sit in a room all day like a caged animal, depending on others to clean up after you, to be at the mercy of the system on a daily basis, to have to plan a shower like a Hollywood production. Why not stop aiming for pity all the time and come down in the trenches with those of us who have to fight every day not to be patronized and treated like children? There isn't much of a saga in that now, is there? I would abort a fetus rather than subject it to what I go through on a daily basis.

Steven Ascher and Jeanne Jordan: Nothing in this film is intended to make you feel pity for the Heywoods, and they don't see their lives as pitiful. They are trying to make the best of a bad situation, as you are. The film shows Stephen not just clinging to life but being productive (rebuilding two houses), actively raising a child, playing a central part in his family life, and finally helping develop a technology (BrainGate) that may someday help other paralyzed people remain productive and communicative.

Stephen would be the first to say that ALS, and all the humiliations that come with it, suck. Beyond that, he tried to do whatever he could.

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Washington: Thank you for an incredibly moving and uplifting work. It was hard for me to fall asleep last night thinking of this remarkable family and all the pain they went through. Stephen Heywood always will be an inspiration to me, as will his family and friends ... especially his brother Jamie. For someone to inspire such devotion in his friends and family, Stephen must have been quite a guy.

Steven Ascher and Jeanne Jordan: Yes, Stephen is a true mensch. His sister-in-law once described him as "a hunky-poet-carpenter guy". When we first started filming him we had no idea how lucky we were--but spending time with him was a joy and we learned so much from him.

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Toronto: As producers, how do you react to the breakup of Jamie and Emily's marriage? What is the impact on their little girl? We can only hope there is a possibility of mending the marriage -- they are all such caring people.

Steven Ascher and Jeanne Jordan: We were sad when Jamie and Melinda's marriage ended but understood that they both felt it was necessary. They have remained very good friends and have moved on to other relationships. Everyone involved adores Zoe and she is growing up to be a beautiful, talented and well-loved little girl.

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Boston: I had a difficult time grasping what Jamie was discussing on camera with the filmmakers toward the conclusion, something about the constant filming contributing to the unraveling of his marriage. Was this the point of contention?

Steven Ascher and Jeanne Jordan: Jamie's comment wasn't about the constant filming--and we weren't constantly filming. He was recounting Melinda telling he and their marriage counselor that everyone around her wondered when she would get fed up. Neither Jamie or Melinda would ever say that being filmed had any impact on their relationship. They also don't blame ALS for their breakup. Marriages come unraveled for complicated reasons. Theirs was no different.

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San Francisco: I read Wendy and Ben's interviews on the Web Site. I enjoyed Wendy's warmth both in the film and in her writing. Is she working on anything about her and Stephen?

Steven Ascher and Jeanne Jordan: Wendy really wants to write a book about caregiving and is looking for a publisher. She's a vital, hilarious, wonderful woman and her insights are always unexpected and refreshing. She misses Stephen terribly and is always looking for some way to help other who are in their situation.

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Washington: I was captivated watching your film last night. It was particularly inspiring to me because Stephen was so courageous and I could identify with him as the father of young children. My uncle also died of ALS and it was very sad watching him struggle to maintain his dignity. I was wondering if Stephen's family gave you access to the harder, more emotional discussions that must have taken place as Stephen's condition deteriorated.

Steven Ascher and Jeanne Jordan: The Heywoods gave us access to their lives in every way. The truth is that when a battle like the one they were involved in with ALS is going on there isn't a lot of time to talk about losing that battle. They didn't want to lose the battle and they didn't think they would. Stephen's death, when it happened, was an accident and the most emotional discussions are going on now--as we all try to move on without him.

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Gainesville, Fla.: I was fascinated by your documentary and believe that it accomplished much both in terms of education and, perhaps most importantly, in humanizing a dehumanizing disease. Personally, I found the brother's organizational efforts distracting from the narrative flow of the film. I would have liked to see more questions asked of the entire family ... of how they were able to cope with the gradually unfolding tragedy. What is emphasized are the family's stoic qualities -- the proverbial stiff upper-lip. Obviously, there is great love here, I just would have liked to see more overt expressions of it. More medical background and historical perspective also would have been welcome. Overall, however, this film serves a vital function in its sensitive handling of a taboo subject.

Steven Ascher and Jeanne Jordan: The Heywoods are doers -- very active people. They didn't spend a lot of time talking about the situation they were in and genuinely are quite stoic. We did sit-down interviews with them all but seeing them in action was always more telling than any words. We had over two hundred hours of footage and it was tempting to make a much longer film. But we were trying to get the sweep of what happens with this fearsome disease while capturing the experience of the people involved.

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Washington: As Stephen himself emphasized, technology was able to offer him some wonderful benefits in dealing with his conditions. I am wondering, about how long would it take him to compose one of his brief sentence replies to questions on his machine? Was it a laborious process of selecting one letter at a time?

Steven Ascher and Jeanne Jordan: Sentences are constructed using letters or entire words (or in some cases pre-built phrases). so it's not just one letter at a time. The scene in the film where he talks about losing his thumb muscle shows him "talking" in real time (with plenty of pause). After that, we cut out the pauses for typing because it took too long on screen. Instant messaging was a great way to communicate, because you could write something to him, then keep doing other things while he answered at his own speed

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Detroit: Wonderful film! But I am curious -- if the filming was completed back in 2004, why is it being released only now?

Steven Ascher and Jeanne Jordan: It took about a year after filming to complete editing, then some months of "finishing". The film premiered at the Sundance film festival in January 2006, went on to many film festivals around the world, showed in theaters from fall 2006 to March 2007, and now is on TV.

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Cleveland: Great show and I agree, one of "Frontline's" best. It was saddening to watch Stephen's digression but as well hopeful to watch him and the "guerrilla scientists" form their foundation. What are the Heywood's and your plans with respect to documentary filmmaking in the future?

Steven Ascher and Jeanne Jordan: thanks. go to frontline.org where you can get updates with the Heywoods and a conversation with the filmmakers to see what we're working on now

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Washington: I had first learned of Stephen Heywood from reading the book about him, "His Brother's Keeper," and I was thrilled when I saw that a documentary had been made about him and his family. You did a wonderful job of capturing the whole family, but I was most struck by how much everyone was still smiling and laughing, including Stephen. There seemed to be no anger, resentment or desperation in any of them, and they seemed truly happy just to be together, which is amazing for such a devastating diagnosis. Are they still doing well, even after Stephen's death? Also, did you read the book or have any contact with the author? Were the book and the documentary being done at the same time?

Steven Ascher and Jeanne Jordan: We first heard about the Heywoods when we read Jonathan Weiner's article in the Feb 7, 2000 issue of The New Yorker. Jon went on to write "His Brother's Keeper". That book really covers the first year after Stephen's diagnosis and So Much So Fast picks up where the book leaves off. We became friends with Jonathan but were never working together--just giving each other moral support.

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Washington: How often did you film through the years (i.e. once a month, once a week)? (I'm assuming your permanent home was not near the Heywoods, though perhaps I'm wrong.)

Steven Ascher and Jeanne Jordan: We live very near the Heywoods in the Boston area which is one thing that made this film easier than our last "Troublesome Creek" which meant traveling to Iowa several times a year. You can see more about our filming process at frontline.org.

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Washington: I really enjoyed the film, but I was unclear on one of the events: Exactly what happened late in the film when Robert (one of the friends from childhood, who had a lead role in the foundation) left the foundation? Was he pushed out by Jamie because of some sort of disagreement? And if so, what was the disagreement about?

Steven Ascher and Jeanne Jordan: Robert played a key role in starting and growing the foundation. Wen it reached a certain size he felt that he didn't want to manage that many people. He and Jamie agreed it was time for a change. He has since run other nonprofit organizations and is now getting a degree in Social Work. Robert has remained close to the Heywood family, and like everyone, was crushed when Stephen died.

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West Babylon, N.Y.: First of all I wanted to thank you for airing Steve's story -- my Mother died from ALS 1 1/2 years ago and I know witnessed the pain and suffering she quietly endured for so many years. Telling and showing Steve's courage in the face of death will serve to enlighten others to find the cure to this disease ... hopefully sooner than later. Thank you for being keeping Steve's spirit alive, as well as my Mother's.

Steven Ascher and Jeanne Jordan: Thanks. We were just talking this morning about how if we could have seen this film when Jeannie's mother was diagnosed, at least we would have felt a bit less lonely. We hope it gives people strength.

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Baltimore: Viewers may be interested in the book "I Remember Running" by Darcy Wakefield, a woman who had a baby and wrote this book in the short time between her diagnosis of ALS and death. Her friends created this Web site.

Steven Ascher and Jeanne Jordan: Thanks.

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San Francisco: Steven and Jeanne, I had trouble sleeping last night because I was so moved by your beautiful film and the chance to meet that amazing family. I am curious about Alex's interaction and relationship with his father as Alex became older and Stephen lost his abilities to speak and play with his son.

Steven Ascher and Jeanne Jordan: Alex and Stephen had an amazing and close relationship. Stephen once described himself as Alex's "Barcalounger" as they watched movies together. Stephen had a list of commands and comments for Alex programmed in his voice synthesizer and Alex never disobeyed him.

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Modesto, Calif.: What difficulties did you encounter through the documentary process? Did the family experience "buyer's remorse" about letting you film? Were there scenes that you couldn't include because of objections? Seems like the longer you stay in a situation the higher the risk of losing your independence.

Steven Ascher and Jeanne Jordan: The Heywoods didn't have any editorial control over the film and never voiced any objections when they saw it close to the time we finished. Our goal was always intimacy rather than objectivity. Keep in mind that we started the film fresh off our own battle with Jeannie's mother's ALS. You'd have to ask them about "buyer's remorse" but our sense is that they feel having many, many hours of Stephen living his amazing life is a gift--one that will help Alex know his dad in the future.

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Modesto, Calif.: How did you choose the Heywood family story -- among the many worthy topics -- to follow, and did you ever think it would involve this much time and dedication to complete the documentary?

Steven Ascher and Jeanne Jordan: We wanted to do a film about ALS when Jeannie's mother died of the disease. We looked for a situation to film that had many elements--not just illness but also the fight against it. The Heywoods were perfect. We have had the privilege of doing films about topics that we are dedicated to personally--so no matter how long it takes it's worth it to us.

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Boulder Creek, Calif.: I have been fighting ALS for two years. Great show! How has the ALS TDF work changed the way the medical establishment views ALS? Is its work more accepted by the medical mainstream? Ben's active role in the ALS online resources is fantastic.

Steven Ascher and Jeanne Jordan: The film shows the early days of ALS-TDF, when they were seen by some as opponents or "guerrillas" relative to mainstream research. As the organization has matured, they are proud of engaging mainstream companies in ALS research and carrying out research that is much more like what is done in academic labs. Their initial mission -- to rush at the problem and try to find a quick answer -- has given way to a program working on a much longer timeline. So, in some ways they've changed the establishment, and in other ways they've become more like it.

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Greensboro, N.C.: Is there a reason why you did not really interview Stephen's parents? I am curious as to how his breathing tube came unhooked in the middle of the night, but no alarm went off?

Steven Ascher and Jeanne Jordan: We did interview Peggy and John -- parts of which are in the film. We had to condense 4 years of life and 200 hrs of footage to come up with an 82 minute film. There were many hard choices in terms of what got cut.

When Stephen's respirator detached the alarm did go off. His caretaker had just been up helping him and had just gone back to sleep. If you've been around these machines you know there are a lot of noises at times and sometimes it's hard to hear them, or you block them out. It was a heartbreaking accident.

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Houston: I watched this last night and was struck by several things -- the support of his family, the action of his brother to setup a foundation and the dedication of the staff, the gains versus the losses from the actions of the foundation, Stephen's sense of humor throughout, and his increasing acknowledgement of the isolation his illness imposed. I was humbled and thankful for your effort in documenting this for us. Thank you so very much.

Steven Ascher and Jeanne Jordan: Thanks.

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Omaha, Neb.: I watched your film last night and wonder how you might have proceeded if Stephen's life had not ended so suddenly because of the accidental disconnection of the respirator. In literature the deus ex machina device sometimes seems contrived, yet in this situation it was real. How unfortunate! Or might it have been a blessing in disguise? Perhaps there might not have been a good way to end the film. How did you feel about this ending?

Steven Ascher and Jeanne Jordan: We finished the film long before Stephen died and have shown it at festivals and theaters--often with the Heywoods in attendance. Stephen loved getting standing ovations (don't we all?) We chose to end with Ben and Sherie's wedding because it felt like we'd come full circle--all three brothers' weddings are in the film. It was a beautiful event and is a new beginning--such an embodiment of the Heywood's philosophy of living each day--and making sure Stephen is a part of it all.

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Dallas: First, I thought that was a beautifully done film. Those sorts of films can be so depressing that while well-meaning may be unwatchable. Your work provided things like hope and brotherly humor that counteracted such a perspective. Something else that struck me was the juxtaposition of the disease and gifts the family had been given. You had three brothers who were good enough looking that they could have come out of Central Casting, and their significant others were just as attractive. They seemed to have led the kind of charmed, East Coast suburban lives that we always hear about. That made the situation of the diseased brother that much more powerful and poignant. Finally, I think the ultimate message in the film was to value life itself, because it can be taken away, either quickly or (human) cell by cell.

Steven Ascher and Jeanne Jordan: Know what you mean about Central Casting. Stephen could give Clive Owen a run for his money in the hunk department.

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Washington: I was incredibly moved by your film, which I saw on "Frontline" last night. Your depiction of ALS's effect on Stephen over the years was remarkable and heartbreaking. Stephen's family's and friends' limitless love and optimism for him shined through the entire film. Thank you for bringing so much attention to the Heywood family's cause. How has the Heywood family coped with Stephen's loss? Stephen was the motivation for Jamie's foundation -- I hope it hasn't weakened his determination.

Steven Ascher and Jeanne Jordan: The Heywoods and all of us who love Stephen are adjusting to his death one day at a time. It's very recent for us--only five months. Nothing will stop Jamie. He's a man with a mission and will remain so. He and Stephen always knew that this was not just about them. Ben also continues the fight with patientslikeme.com.

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Hazel Park, Mich.: I was so glad to be able to watch "Frontline." My sister was diagnosed more than a year ago. When she told me she had Lou Gehrig's disease, I asked "what's that?" There needs to be more films made about this horrible disease so families can understand what to expect.

Steven Ascher and Jeanne Jordan: We've been heartened that people coping with ALS have found the film helpful. One man wrote us that he wanted to show his uncle, a PALS, because it shows you can have a meaningful life in the time you have.

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Portland, Ore.: I very much enjoyed your program last night. It raises another question for me: After the 1991 Gulf War, hundreds if not thousands of veterans have come down With ALS. The VA first said that it had nothing to do with the Gulf War, and you had to come down with symptoms within the first year of discharge. Now they say that it did have a correlation with the Gulf War, but they only support veterans that were deployed. I receive the same shots as I prepared to deploy did not deploy, therefore I'm not fully covered by the VA. I have more than ten years service, active and National Guard; I was attempting to reenlist when I was diagnosed. The National Guard had been looked down on for years, and because of the Gulf wars I think the perception of the National Guard has changed. We are soldiers too -- do you think soldiers who were prepared and got the injections but did not deploy deserve the same benefits as the deployed soldiers? They need the same benefits as the rest of the military. Not all of us are dead yet that the government can afford to play the waiting game. Thank you for your time from one of the forgotten.

Steven Ascher and Jeanne Jordan: The correlation of ALS and the Gulf war is an evolving story. As far as we know, a definitive correlation hasn't been proven, but there is evidence of a higher incidence of ALS in vets than in the general population. As you know all too well, the question of veterans' benefits is complex and full of problems. We don't have any helpful advice other than to try to stay on it and be in touch with veteran groups to get the benefits you deserve.

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Washington: Excellent show last night. I was very moved ... and I'm in the research field. I appreciate that you show the rats and mice and the animal lab, showing that the animals are well taken care of and not treated like most animal rights activists claim. Did you have any problems with activists who oppose animal research?

Steven Ascher and Jeanne Jordan: We had no problems with animal rights activists. We were really struck when we asked Stephen's friend Ken Thompson, who runs the ALS-TDF lab if he had trouble working with the mice and he said that the most difficult part was thinking of what Stephen's body was going through. Without the mice none of this research would be possible.

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Modesto, Calif.: I have produced some short documentaries, but never to the extent you went for this one. Did you get unexpectedly emotionally attached to Stephen and his family because your presence was through such a long period of time?

Steven Ascher and Jeanne Jordan: We did get emotionally attached but we expected to. However there was no way to know just how deep the bond with the Heywoods would go. It's brought a lot to our lives.

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Lowell, Mass.: I watched "So Much So Fast" just last night and was absolutely riveted. During the film it was suggested that folks with ALS can live indefinitely with a respirator, at least in theory. Is the ability to breathe on one's own the last thing to go? Can there be further deterioration after this point? Steve talked about his "20-year plan" near the end of the film, and how technological advances soon would make life much simpler for people with ALS. Was he referring to the "thought-controlled" computer mentioned in the epilogue, or is there even more promising technology on the horizon? Thanks and great work.

Steven Ascher and Jeanne Jordan: People with ALS progress at different rates, and lose function in different ways (for example, some people lose speech very early, others late).

Stephen's 20 year plan was based on the belief that technology was racing ahead and he could imagine (as a lover of superhero movies, video games and technology in general) all sorts of devices that would make his life manageable. He was particularly looking forward to a robotic arm, and that was one of the things they were working on with the BrainGate technology. Be sure to see the video on this posted at frontline.org

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Irvine, Calif.: Thank you Steven and Jeanne for this wonderful film about Stephen Heywood's courageous fight against ALS. I watched it on "Frontline" with my mother, who was diagnosed with ALS almost three years ago. We are one of the more fortunate families -- her progression has been relatively slow because of predominantly upper neuron damage -- but she constantly deals with the frustrations of performing simple tasks that we usually take for granted. As strange as it sounds, despite more than two years after moving back with my mother to aid in her caregiving, I was beginning to feel complacent about my mother's condition. While it always was in the back of my mind, this film snapped me back to ALS's cold, hard reality. It reaffirms that I should cherish every moment that I have with my mother, no matter how mundane it may be. I also would like to express my deep admiration for Jamie Heywood. Coming from an engineering background (Berkeley EE), I really can appreciate his can-do problem-solving spirit. I'm sure my sister (UCSD Bio-E), who is very familiar with testing genetically altered lab rats, can too! But what I admire the most is his initiative and drive in setting up and running the ALS TDF. Engineers are somewhat myopic by nature -- the end result is paramount, nothing else matters. In this case, Jamie should be lauded on what he started. Thank you Jamie!

Steven Ascher and Jeanne Jordan: I know that the response of people like you and their families keep Jamie and all the great folks at ALS-TDF going. I also know what you mean about needing wake-up calls every once in awhile. When my mom was alive I often had that feeling Wendy expressed in the film "I can't believe you have (expletive deleted) ALS!"

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New York: Steven and Jeanne, thank you so much for the documentary. My daughter, incredibly delicious and 2 years old, was just diagnosed on March 5 with a "milder" form of Spinal Muscular Atrophy -- a motor neuron disease similar to ALS, but more slowly progressive. Your film was so timely for me. It gave me enormous inspiration for what Jacqueline's life can be in the face of this devastating and progressive disease. Stephen Heywood and the Heywood family faced ALS with continued dynamic living, hope, fierce advocacy, strength and laughter. I hope that my daughter and our family can face SMA in the same way. Thank you and God bless.

Steven Ascher and Jeanne Jordan: Thanks for your note. Good luck with Jacqueline. Your attitude will carry you a long way. One thing that has comforted John and Peggy is knowing they did everything they could for Stephen. That's all you can ask.

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Greensboro, N.C.: Thank you for this beautiful film -- it was so inspiring. I lost my dear 44-year-old brother two months ago to alcoholism, which he struggled with for 30 years. Even though the diseases are different, they both are debilitating and affect the whole family. I know how heartbreaking it is to watch a family member slowly die. Stephen, his wife and family were so courageous, and to see the dedication of his brother, friends and family to trying to find a cure was awesome. I was heartbroken to learn that he passed away in November, but I will never forget him or his story and I will donate money to this worthy cause.

Steven Ascher and Jeanne Jordan: This film focuses on ALS, but the issues in it apply to all sorts of situations. Sorry for your loss.

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Potomac, Md.: Extremely moving recount of Stephen's family's inspirational way of living with a very tragic disease. It ended abruptly with the note about his death and I am curious to know what became of Jamie. Perhaps that is another movie in itself -- where one so clearly driven to help his brother places all of his energy and efforts at the moment when he ceases to be needed so urgently. Also what happens with the rest of Stephen's family, who also had also so admirably dedicated their lives to making Stephen so comfortable and as independent as he could be ... do they lose a sense of purpose or easily transfer that elsewhere? I know we easily can lose perspective on the fragility and beauty in life and I thank you for the reminder your documentary gave and for the openness Stephen and his family had to allow Stephen's life to touch mine and others'. Wouldn't it be a great requirement for students in middle school or high school to see such documentaries and discuss issues of true importance?

Steven Ascher and Jeanne Jordan: We'd love to have the film seen in middle schools, high schools, colleges, medical schools. When the film was shown at the U of Iowa one of the neurologist said "We never get to go home with our patients. Thank you." The goal of the film is to create empathy.

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Reading, Pa.: Thanks for the wonderful story. I hope I never experience this disease in my family, but what a wonderful family Stephen has. And what a positive person he was! Hopefully someday there will be a cure.

Steven Ascher and Jeanne Jordan: The more people know about ALS the greater the chance for a cure. We hope the film raises a lot of awareness.

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Payson, Ariz.: Just a comment ... what a well-done documentary of such a moving and inspirational story. My husband and I were glued to the set. What a courageous family. An award-winner for sure. Thank you.

Steven Ascher and Jeanne Jordan: Thanks.

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Steven Ascher and Jeanne Jordan: As filmmakers, having our work reach so many people and hopefully make a difference in their lives means the world to us. It's why we make films. Thanks for all your comments.

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