Although I did not see the full program, my initial reaction to the foundation was one of resentment because I believed these "amateurs" were "pissing away" thousands if not millions of dollars that could have gone to more traditional entities.
My wife recently succumbed to the disease this January, having fought valiantly since she first exhibited symptoms in May 2005. Unlike Stephen, she lost her ability to talk almost immediately,deteriorating swiftly in under two years.
The conclusion of the show pointed out some gratifying breakthroughs and I now hope that the foundation, along with other traditional groups can work to eliminate this disease, or at least develop an effective treatment.
Garry La Vine
I would like to thank Steven for giving hope. I was touched by his beauty and his strength. I've never heard of ALS and now feel hurt and saddened for anyone who is dealing or who has been dealt to deal with this. It gives me a new outlook on life.
Thank you. May you rest in peace with the grace of God always.
As someone diagnosed with ALS 4 months ago, I am impressed and thankful for this program. Having experienced my mother' death from ALS 28 years ago, I am anxious for as many people to learn about ALS and how it impacts those with the disease and those who love them. Frontline, thank you gor producing and airing this.
Beth Ann Lipskin
Colorado Springs, Colorado
As an assistive technology practitioner, I was thrilled to see Stephen utilizing the various technologies available for people with developmental and acquired disabilities. I was also very intrigued by his involvement with BrainGate. Even after his death, Stephen's courage and capacity to inspire will help many, many people. Thanks for sharing this story.
Thank you for airing this documentary. It was very informative about how to deal with ALS. I was happy to see that computer technology could be used to talk. My son has as yet still unknown muscle disease. He is 19 and has trouble breathing, swallowing, walking and using his hands at times. We still don't know if he has ALS or not but seeing this documentary showed me that he could play his computer even if he did get ALS. I was wondering if you could tell me what the program was that helped him speak on the documentary. And how people could order it if needed in the future. Thanks again for airing this program. I wish his family and friends luck.
St Francisville, Louisiana
FRONTLINE's editors respond:
The technology that helped Stephen Heywood speak is called EZ Keys. Read more about this and other technologies available to help people with ALS on the FAQs page.
I have a personal connection to ALS, having lost a friend and coworker to this disease. She was like Steven in that she had such a buoyant attitude nearly always. We who watched her wither away found it almost unbearable sometimes. And near the last of it, she got angry with it sometimes. ALS is such an awful disease.But it has bothered me almost as much that respirators "pop off" from their connections. This was brought to my attention by Chris Reeve's plight. And at the time, I thought of a solution, but have not actually seen the equipment and so now I put this idea out there. It seems an easy solution to create tubing for respirators that have connectors much like old fashioned lunch boxes, a hinged lifting clasp (clamp?) that would go over a projection on the other tube, keeping it snug but also allowing it to be removed for cleaning or other purposes. It could be made of the same plastic the tube is made of. Why should someone in the position of having to fight for every breath have to worry about something so mundane and simple as their tubes? For Steven to lose his life because of equipment failure seems unnecessary.
About the film, I was so moved by the caring of his family and friends. What a great group of people and I hope they are doing well today. It was a good documentary.To my friend, Shirley, who left too soon: we remember you well.
Mountain Home, NC
One of the most touching Frontlines ever. I cried several times during this film, but I smiled just as often...at Stephen's courage and wit, his families devotion, and his delight in his son. As an RN, I have taken care of people with ALS, and it is one of the most devastating diagnosis because of the way it slowly robs the person of everything but their mind. Again, just have to commend the film makers for an incredibly moving, informative Frontlines ever. Thank you so much for touching my heart.
Thank you for such a touching foray into your personal lives and that of Stephen.
I watched the PBS story tonite called So Much So Fast and I was deeply touched at the lengths a family and friends go to help someone they love so much.
I also learned a great deal tonight about ALS. I did not know that it was considered an "Orphan Disease" and I did not know that there was not much being done about it because it was not "cost efficient" for the drug companies to do anything about it.
Kind of like the AIDS virus in the early 80's.
I have brain cancer and I know the HOPE, and FEAR that often times accompanies a devastating diagnosis.
You have my deepest condolences on the loss of Stephen and my most heartfelt wish that you ARE successful in your search for a cure.
May God Bless You!
The Heywood family's story brought back my own family's loving support when my husband battled ALS from 2001 until he passed away in November of 2004. Our children were young adults, but he still valued every single visit with them...and with our granddaughters. The program tonight brought back many memories of the initial diagnosis and our journey with ALS. I still think of him and miss him everyday. I know that Stephen's family must feel the same way.
I just lost my loving companion after 3 yrs with ALS. He had been on a respirator since December. Altho I know accidents can happen--did he not have an alarm on his vent? He was a courageous guy and he had a wonderful family, like my darling he sure did not deserve this terrible disease. I want a cure so bad.
This wasn't so much about how to live with ALS as it was about how to "LIVE"
I can't easily explain what it has been like to watch this show. My Mom was DX in June of 1997 and died in March 1999. At the time of her DX I was 2 months pregnant and my daughter was 14 months old when she died. As much as her ALS was part of that time so too was my new motherhood and Maddie's infancy. Watching this show was the first representation of ALS as a family disease - you have done a beautiful job of telling this tale. My mother, who hated television, would be very pleased. Thank you. Thank you. Thank you.