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

Dear FRONTLINE,

So Much, So Fast is a fine program. I found that I wanted so much more information about Steven's progress. I was diagnosed with ALS in November, 06. Since symptoms began in February, 05, I have had many, many falls, including one fracture, and three ER visits to stitch up my head. A power wheel chair much earlier in the process would have save me a lot of anguish. So, it wasn't made clear in the program is Steven had a lot of falls, nor was anything said about problems with his feeding tube, his respirator, his trach. These problems are also part of the picture.

I hope this program will spur a lot more public knowledge about this disease, along with more intensive research. Thanks so much for airing this program.

Tom Orr
Tucson, AZ

Dear FRONTLINE,

Thank you for sharing your life challenges with us, Heywood family. There is so much to be learned here about positive attitude, genuine family love and commitment and turning obstacles into challenges. The level of commitment between these brothers is amazing - the world could stand to learn alot from that level of caring. Stephen was an amazing human being - one who I would prefer to be mankind's role model over alot of "able-bodied" people. Jamie, Ben and Wendy are heros in my book. This documentary will change people's lives and perspectives.

Red Deer, Alberta, Canada

Dear FRONTLINE,

Thank you! What a wonderful program!! It brought back so many happy and sad memories of our own. My father-in-law Ed was diagnosed with ALS in 1984 (at the age of 38) when my husband and myself were sophomores in high school. Dad and Stephen were so alike in that both had such a great sense of humor that helped themselves and others deal with such a disease. As kids ourselves, Joel and I were thinking of only Dad's future and what it was to bring--so with not 'thinking' of our own future, we brought a new life into the world to share with Dad. Jessica was Dad's pride and joy and he would sit and stare at her for hours. I will be honored to share this program with our now three daughters who are now 21, 16 and 7. They all know who grandpa is as he is the "Man In The Moon" and will be watching over them always. Keep up the great work in the research, etc. We will always be in support of finding an end to this disease.

Rynda Westendorf
Altoona, Iowa

Dear FRONTLINE,

This was one of the most compelling documentaries I have ever seen. Nothing short of brilliant.

ALS is such a terrifying disease. I know of no one who has had it, but the fact that it can happen to anybody makes me apppreciate living even more so.

My heart goes out to the Heywood family, who will now and forever be in my prayers. Along with all those who currently suffer from ALS and those who may contract the disease in the future.

It could be me.

Brian T
Gainesville, Florida

Dear FRONTLINE,

It has been almost one year since my mother passed away with ALS. She was fortunate that she was almost 86, she was unfortunate in that she only lasted 6 months after diagnosis. I really enjoyed the airing on Frontline - it helped me come to terms with "my feelings." My mom did not want any artificial means of life support - feeding tube or respirator. I think this hassened her death, she lost 30 pounds in 3 months. The worse thing about the disease for her was loosing the ability to speak, although she was pretty witty with her white board. We were very fortunate to have wonderful hospice care and friends. I was glad when donations were made in her name to ALS-TDI.

thanks again....

Julie Scheels
Jackson, MI

Dear FRONTLINE,

Thank you so much for airing the story about the Heywood family, it touched my heart in many, many ways. I have lost both of my parents to ALS. My mother died at age 41 in 1965, three years after diagnosis at Mayo's. My dad died in 2000 at age 79, almost three years after diagnosis. For both of my parents I provided on-going care - more for my Mom since I was only 14 when she was diagnosised and 17 when she died. For my dad, once his diagnosis was confirmed I spent every Sunday with him, giving my step-mother some personal time. It was like taking a trip back in time - since nothing really had changed in the prognosis, medical assistance, medicines, or outcome since my mom died in 1965. The most dramatic changes were the electric wheel chairs, auto lift and van that we were able to get for my dad and the caring doctors at University of Michigan ALS Clinic that we visited once a month. There has to be a solution to this disease - it is a horrible way to die - and a life-altering event for a family. The show demostrated the power of family to address and battle ALS. My hat is off to all. Keep on with your work, please.

Susan Wilkis
Okemos, Michigan

Dear FRONTLINE,

Thank you for airing this wonderful film about Stephen Heywood's courageous fight against ALS. I watched it with my mother, who was diagnosed with ALS almost 3 years ago.

We are one of the more fortunate ones - her progression has been relatively slow due to predominantly upper motor 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 2 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 was always 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.

Vernon Liang
Irvine, CA

Dear FRONTLINE,

We just lost a friend to ALS and celebrated his life a few days ago. Thanks to all of you for this film - which celebrates the life in all of us - and demonstrates how free is the life of the soul regardless of physical limitations.

Liz Hahn
Waimea, HI

Dear FRONTLINE,

Over my twenty-seven year career as an Occupational Therapy practitioner, I've met and worked with one person with ALS and I've always wondered what life with ALS was like, how my profession could better help these individuals seek a quality of life, and what that could look like. I thank Frontline for airing "So Much So Fast" as this heartwarming story will touch my life forever 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?" Living every day as if it were your last, makes life so much more acute and valuable, as Stephen, et al, showed us tonight. My journey through cancer continues to teach me how to LIVE and this documentary has the potential to open eyes and offer a new perspective of life for many people.

Donna Mass
Barstow, CA

Dear FRONTLINE,

I recognized symptoms in March 2003, but we thought I had a stroke. In October 2003, it was confirmed to be ALS. I was 73 years old at the time. In comparison to Steven I felt that I was fortunate in that my family was grown and when my time came, my family had matured and I was not leaving anything unfinished. So far I've been involved in three double blind clinical trials and two blood tests. I feel that it is the least I could do for those who will follow me. As I was healthy when diagnosed, I believe my longevity is due to my age. At the present time, my legs and voice have been affected. My lungs are OK. I too hope that modern technology will find a cure.

David Durant
Las Vegas, NV

Dear FRONTLINE,

I stumbled on this documentary by chance, and--like many others here--had a personal experience that added to its power. My wife contracted ALS in 1960 at age 22 and lived until 1973. Obviously, she didn't benefit from the advanced technology displayed in this program, but we coped in many ways.

Two aspects of the program that I resented (I'm being honest about my feelings). First, the Heywoods are upper middle class in education and income which allows good care--including vital respite care for a spouse. And Steve obviously had medical insurance so generous that a $26,000 motorized wheelchair was covered. Consider what a documentary about a less-wealthy family would have looked like. Second, the Foundation, although earnest, dedicated, and newsworthy, never seemed to have any dealings with the National Institute of Neurological Disease, part of NIH. My wife's definitive diagnosis came at NIH in 1962, and the omission of NINDB's research struck me as somewhat arrogant on Jamie's part.

DONALD LIEF
Portland, OR

Dear FRONTLINE,

Thank you so much for a glimpse into the life of a PALS. Stephen and Wendy reminded me once again how important it is to live every single day as if it were our last. I was a personal witness to very similar strength and courage as exhibited by my own brother, David,who was diagnosed with ALS in his early thirties. David lived with a respirator nearly 20 years before finally calling it quits before becoming "locked out". David's courage and his joy of living showed us all the importance of living every day to its fullest. Thank you ALSTDF, thank you Heywood Family, and most of all thank you Stephen for a legacy of faith, hope and courage.

Amy Ramaker
Oakland, CA

Dear FRONTLINE,

What a wonderful documentary. It showed the power and value of family and friends as well as the courage of one wonderful man. That is how we should live and love; the wars and unkindness that populates the airwaves seems so frivolous in comparison.

Kathryn Holeyfield
Palo Alto, CA

Dear FRONTLINE,

Frontline is the best program on television. A gem.

To the Heywood Family:

Forty minutes into the program I realized I had fallen in love with your family. Your story is as memorable as "The Farmer's Wife", another outstanding Frontline film. I still think about that family from time to time. I know I will think of all of you, as well, and remember you and all families coping with ALS in my prayers.

It encourages me to see evidence that love and commitment still have a stronghold in this world. Thank you.

Loralee Dimkoff
Albuquerque, New Mexico

Dear FRONTLINE,

This show was a wonderfully honest and insightful. As a child I watched a beloved neighbor wither away. She lost her speech very quickly, and lost her muscle control slowly. I can still remember hearing her playing the piano every evening. It was not until the music stopped did I realize her body was fading away. When she passed on, the world lost a beautiful woman and her beautiful music.

ALS is a disease we do not see in the headlines and we should. I do not think people know just how quickly it robs its victims of their bodies.

Politics and greed have impeded our medical evolution and that is truly a tragedy. Thank you for reminding us it about people and nothing else should matter.

Denver, Colorado

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posted apr. 3, 2007

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