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stephen heywoodJoin the Discussion - What are your thoughts on the Heywood family's remarkable story?

Dear FRONTLINE,

Our family wanted to make sure that patients and families watching the film know that excellent electronic wheelchairs are essential equipment for the well being and quality of life of ALS patients. ALS patients are almost always eligible for Disability and therefore Medicare, which will purchase a wheelchair and other needed durable equipment.

Peggy Heywood (Stephen's Mom)

Peggy Heywood
Newtonville, MA

Dear FRONTLINE,

Another great program! Frontline is a credit to the television industry. I'm in my fifth year since being diagnosed with ALS and can certainly understand the Heywood families' need to try to find a cure. However, more "splinter guerrilla science groups" are popping up every day (ie. Project ALS) that are diverting funds away from the Muscular Dystrophy Association, ALS falls under their "jurisdiction". ... Imagine if all of the "splinter groups" donated their funds to the MDA, I think we'd be closer to curing, or at least preventing, all forms of neuromuscular disease.

Dewayne Sizemore
Cincinnati, Ohio

Dear FRONTLINE,

This is the second time I've seen The Heywoods story. There aren't enough words to express my feelings. How terribly sad that Stephen isn't here. But I know that he has left the most incredible mark on all he knew and didn't know, including me. I'm here crying not for sadness but for the most beautiful, loving, caring and real family I think I've ever seen. I've never known anyone who had ALS. But by watching this story, I am more aware of ALS and the difficult path it must be for all involved. How terribly sad that the drug companies don't feel it worthwhile to spend the needed money to find a cure. I can only hope that a cure for this terrible disease will be found sooner than later. Heywood Family, Wendy and all, you are incredibly passionate ,beautiful and wonderful people. Oh, what a better world this would be if we were all like you. Thank you for making me take a step back and think about the more important things in life. I wish you all a good life.

Linda Appleby
Mill Valley, Calif.

Dear FRONTLINE,

I've watched Frontline for many years, but this incredible episode was one of your finest. I was in tears throughout much of the film as I, like many other writers here, can relate to much of it in a personal way

I became paralyzed, a "C 6/7" quadriplegic, in a car accident in Upstate NY in 1978. I am paralyzed below the arms but can't use my fingers and don't have full use of my left arms. Due to lack of control over my chest muscles, I only have 40% lung capacity. It leaves unable to perform the simplest, everyday tasks that I never thought about before my injury. I also have a chronic pain problem that at times is worse than the paralysis.

However, I was fortunate enough to be able to later attend law school in California in 1980 and become financially independent by working as a self employed attorney and then a Judge in 2001.

I'm dependant on caregivers for ALL bathroom and personal care, laundry, meals, etc. Steven appeared to luckily have a relatively broad support network of caregivers. I have been blessed with a saint of a wife for the last 15 years.

One thing I don't recall being mentioned in the film was that medical insurance almost never covers attendant care, except for, at most, 60-100 visits per year (and you need 2 per day). This forces many individuals who become severely disabled, by accident or disease, to bankrupt themselves to be able to qualify for Medicaid. Then, they must accept whatever attendant care program their State may provide (its not mandatory for the State to provide that benefit) and hope they have enough family and/or friends to make up for the rest of the care they actually require each day. If they don't have that backup network, they end up in a nursing home, even though the monthly cost may be double or more the cost of living independently. This situation is a National disgrace.

Stephen was blessed to have a family that had the financial resources to somewhat soften his daily existence. His family, especially his brothers (and close friends), came to his aide in a way that amazed me and made me a bit jealous. Their ability to see what was/is truly important in life is incredible. Stephen had no choice but to deal with it, they did and can be very proud of themselves. From personal experience, it meant the world to him.

Again, thank you for airing this wonderful film about Stephen and his family and their tenacious, rational fight against ALS. Although many writers here characterize him as "courageous," in reality, (and not to take anything away from him, a sense of humor is essential) he did what the vast majority of disabled people do everyday. We get up each morning and face whatever we faced the day before and pray each night nothing new comes along to make things worse than they already are.

Steve Gibbs
San Jose, CA

Dear FRONTLINE,

I am a Psychology student and I am really interested in neurobiology and the biological componants to debilitating diseases. This story was so incredible, and this family is unlike anything I am used to...they were kind, supportive, a strong unit, a tower against all odds. They have not lost their battle, but created a great heritiage for ALS families.I want to become active in ALS community in honor of their son and husband and father. He was an incredible man, and you have an incredible family.

I was moved by this program, and have posted links to frontline's webpage, on my webpages. I want to share this stroy with people my age, the young college generation, who wander for direction and purpose. Well here it is....

Elisa Calleiro Roberts
hampton, Ga

Dear FRONTLINE,

This was an inspiring and educational film. I am currently a student soon to be entering my final year of physical therapy school. Although I have not had any experience with individuals suffering from ALS, I believe this film gave me much insight into what the patient as well as the family goes through when suffering from this debilitating illness. Thank you for airing such a wonderful film. ... Also thank you to the Heywood's for sharing thier personal lives with all of us. I hope to encourage others in my soon to be profession to watch this film.

Elk Point, SD

Dear FRONTLINE,

Great Show, great family, great work that is being done. Thanks for everything!!I wonder that it wasn't made to look a bit too 'easy', this living with ALS. Many of us are from more typical, blue collar families, and along with all of the struggles that ALS brings, we also have to deal with the financial realities of this horrible disease.We don't have sea-side retreats to go to, or well-off parents who can give assistance.

Kay Goslinga
Princeton, MN

Dear FRONTLINE,

... Our son, Bruce Edwards, died of that disease almost 3 years ago to the day. It was the first day of the Masters Golf Tournament in 2004 -his favorite tournament. He was the long-time caddy and confidante of Tom Watson. They enjoyed a special relationship that was best described by John Feinstein in his book: "Caddy for Life: The Bruce Edwards story". Bruce and Tom were mentioned during the Frontline program. My wife and I have visited the ALS-TDF lab in Cambridge, MA and were most impressed by the dedication and enthusiasm of the researchers at that facility. I hope that this documentary will lead to an outpouring of monies that will help eventually effect a cure for this dreadful condition. Thank you all for that presentation.

Dr. Jay D. Edwards
Vero Beach, FL

Dear FRONTLINE,

This film was so powerful. I had chills the entire duration of the documentary!

My father died of ALS in October of 2006. 13 months after his diagnosis. I very much relate to the Heywood's total inability to accept the disease. I spent the majority of my father's illness in denial.

But that denial...which is still somewhat present...spurs in me an incredible NEED to do something. And THAT is why I loved this story. Jamie Heywood IS doing something...something which takes courage and strength and hope.

And ALS tries day in and day out to rip that out of you.

Thank you SO much for airing this. I hope it brings awareness to people who might normally turn their cheek.

Tara Buckley
Miami, Florida

Dear FRONTLINE,

Hats off to filmmakers Jeanne Jordan and Steven Ascher for their tender rendering of Stephen's story. They capture the courage, love and tenacity of all the Heywoods with stinging clarity. By sharing Stephen's experience, they inspire us to live with humor, intelligence and grace as he did when facing incredible challenges--and to do more to make a difference.

Thanks to Frontline for airing this--in a vast wasteland of tv junkfood, Frontline provides food for the soul.

Jane Garabedian
Cabot, Vermont

Dear FRONTLINE,

My husband was diagnosed with ALS 6 years ago when he was 52 years old. He has been on a vent 24/7 for almost 5 years. His vent will occassionaly disconnect accidently, but an alarm always goes off when the vent disconnects. Even if I am sound asleep, the alarm wakes me up. I wonder why no one in Stephen's house heard the alarm and reconnected it before it was too late? I think the documentary may distress ALS patients who may worry that even if they choose to go on a vent, that they could still suffocate if their vent disconnects accidentally. If you never leave an vent-dependent person alone, there should not be a problem.

Diane Schey
Tempe, AZ

FRONTLINE's editors respond:

When Stephen's respirator detached the alarm sounded. His caregiver had just been up helping him and had just gone back to sleep and didn't hear it. 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. The Heywoods' immediate response was to reassure the caregiver, who'd been with Stephen for years, that it could have happened with any of them.

Dear FRONTLINE,

I was restless and unable to sleep and decided to head to the television set at 3:00am to settle myself. Instead, I found insight into something I knew nothing about, leaving me more unsettled. It was not just a story about ALS, it was deep insight into human life.... a passion for life, a passion to take care of one another, a passion to do what is right. I was so moved, teary-eyed and exhausted but I was glued to the television set until the end. Feeling over-whelmed, I did nothing but reflect upon my own life as a mother, a wife and a sister. I will forever be changed by this story....how could a person not be?

Calgary, Alberta, Canada

Dear FRONTLINE,

My name is Hannah Wood. I am 10 years old. I have a sister who is 12. I have a wonderful mom. Her life is hard without my dad who died of ALS. She let me and my sister stay up late to watch this program, which I liked very much but it made me very sad. My dad was 46 years old when he died, and he had ALS for one year. My dad and I both played soccer. When he got sick I stopped playing soccer to spend his last year with him. I helped my mom daily giving him shots and feeding him food from the tube in his stomach. I wish he was here with me. Well, he is here with me, but I can't see him. When I am older, I want to work in the medical center, helping people who are sick. My sister wants to find a cure for ALS, but I hope one is found before she gets older. I am going to save my allowance and send it to the people who are looking for a cure. My wish: My wish is to work with people who have ALS, and learn as much as I can about this disease.

Thank you for showing this on TV. It helps alot.

Hannah Wood
San Jose, CA

Dear FRONTLINE,

Dear Heywood Family, Thank you so much for this tender,loving and sad story. Finally, something about ALS on TV. Everything is Autism, Breast cancer, Heart Disease...thank you for finally showing the public this little talked about disease. My neighbor died two yrs ago from ALS..and now my best friend's son has been suffering with this diseas for 3yrs. The public and drug company's need to know and be working on a cure. Time is short for these people. No reaseach..no hope. My friends son started going to a quack in Philadelphis who tells him, he has Limes Disease.He gives him injections of antibiotics monthly..and quit costly. But to him, at least he is getting a "treatment". Thank you, thank you... everyone needs to know how these families suffer just trying to get services in their homes, and what insurance does not pay. It's a fight all the way..to the end.

Mary Bishop
Severna Park, Maryland

Dear FRONTLINE,

The depiction of the Heywood family's resolve, resourcefulness, and frustration when faced with a progressive debilitating disease is beautiful and moving. But as a scientist who has worked on models of neurodegenerative disease and someone who has had two relatives die of ALS, I was saddened by the way that science and scientists are portrayed in the film. The "them versus us" point of view may have added to the drama, but it was incorrect. Ironically, one of the biggest breakthrough, the discovery of the gene (SOD1) that is mutated in 10% of the cases of ALS, is a remarkable story of dedicated scientists cooperating and sharing information. One of the catalysts for this work was Bob Horvitz, a geneticist who researches cell death in worms (this research led to his sharing the Nobel Prize for Medicine or Physiology in 2002), and whose father had ALS. His father's disease prompted Bob to team up with Bob Brown at Massachusetts General Hospital to study the genetic basis of this disease. Bob Brown is an amazingly talented physician/scientist who has devoted his life to the study of this and other neurological diseases. Together they and many others across the country and around the world worked together and pooled their information (contrary to the implication in the film). The result was the discovery of the SOD1 mutation

These researchers followed a model established by Dr Nancy Wexler who with her family pushed the effort to discover the Huntington's Disease gene through the Hereditary Disease Foundation. In the model, researchers receive support only when they agree to share their information with each other before publication and to publish the discovery of the disease-related gene as a group they includes all the researchers (regardless of which lab found the final piece of the puzzle). Such collaborative publications announced the discoveries of huntingtin for Huntington's Disease and SOD1 for ALS. ... Many scientists passionately care about the importance of their work and its impact on disease. Few are fortunate enough to be able to push the frontier as Bob Brown and the others in the ALS collaboration have done, even when the push is a small increment on the road to a cure.

Martin Chalfie
New York, NY

Dear FRONTLINE,

Thank you for to the Heywood family for sharing the loss of their courageous Stephen and his life as son, husband, father and brother...not just as a person who has died of ALS. This was a beautiful film and I feel honored to have been able to witness some of the Stephen and his family's difficult journey through the most challenging part of his life. Thank you for capturing all parts of this remarkable man and reminding us the patient is not just the disease.

Janice Reale
Cape Elizabeth, Maine

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posted apr. 3, 2007

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