THIS DOES NOT END HERE...
We will take this disease apart and destroy it


Stephen Heywood, 37; he opened his life to other ALS patients
By David Abel, Globe Staff | November 28, 2006

During the past several years, Stephen Heywood allowed stem cells to be injected into his spinal column, participated in clinical trials for new drugs and genetic studies, and received a brain implant as part of an experiment in how thoughts can be used to control a wheelchair and other robotic objects.

Just as the 37-year-old father from Newton gave his body to science in the waning years of his life -- even allowing himself to be the subject of the recently released, critically acclaimed documentary "So Much So Fast" -- he submitted himself to science in death as well.

Eight years after being diagnosed with ALS, the degenerative neurological disorder also known as Lou Gehrig's disease, Mr. Heywood lost the use of his ventilator early Friday morning, leaving him brain dead. His body survived for two days, long enough for him to donate his kidneys to two patients, relatives said.

"Stephen would tell a joke about wanting to die a heroic death," said his brother, Jamie of Newton. "It went something like this: There would be a fire, and he would save someone. But it would have be a slow fire with ramps, because he would be in a wheelchair. I think he found a way to do that."

In addition to the documentary, the brothers have been the subject of features in The New Yorker, on "60 Minutes," and in a book titled "His Brother's Keeper."

They chronicled how Jamie Heywood, a mechanical engineer without medical training, quit his job to seek a cure for ALS. He set up a foundation, raised millions of dollars, established a research laboratory, recruited scientists, and spent the last several years engaging in "guerrilla research" in a desperate effort to test a range of drugs, including those approved for other diseases.

"Stephen used to talk about how I gave him a gift in all the work we did on ALS," his brother said. "But what most people don't understand is that really he gave me the gift. . . . Stephen's disease will change . . . the way therapies are developed. His illness is a lens to make the process of discovering therapies better. His humanity gives the moral authority to fight the battles to fix the system."

Born in Newton, Mr. Heywood graduated from Newton North High School in 1987, his brother said. He studied English and art at Colgate University in Hamilton, N.Y., graduating in 1992.

Over the following six years, he worked in construction and forged a career in California by designing and building houses in a distinct way. His brother called him "an artist-builder."

"He felt how you formed the wood was a higher art than the actual architecture," Jamie Heywood said.

Mr. Heywood was diagnosed with ALS in 1998 and returned to Newton. He was married in 2000 and had a son, Alexander.

"The thing about Stephen that's the most wonderful, valuable thing about him was that he always said the right thing," said his wife, Wendy. "He made you feel special, that he knew you through and through. He had a sort of Zen knowing. He said everything straight.

" He had the capacity to love everybody, for who they were. He never wanted to change them."

Even as his ALS progressed toward paralysis, he built three houses, including his own. His brother said he trained apprentice craftsmen when he could no longer use his hands and inspired others to imagine and build his designs when he could no longer use his voice.

In 1999, his brother founded ALS TDF, what he calls the world's first nonprofit biotechnology company. Mr. Heywood's other brother, Ben of Newton, and a friend started another company, PatientsLikeMe, allowing Mr. Heywood and other patients to share their disease progression and treatment regimens online.

"Stephen inspired those around him to imagine the impossible and then quietly challenged them to make it reality," Jamie Heywood said. "Though Stephen's ALS was advanced, no one thought of him as a dying man. He inspired thousands of ALS patients, not by fighting or living defiantly against the disease, but by simply making it inconsequential. . . . Stephen lived his life and forgot his disease."

Besides his wife, son, and brothers, Mr. Heywood leaves his, parents, John and Peggy of Newton.

A memorial service will be held at 3 p.m. Sunday at Grace Episcopal Church in Newton Center.
Stephen Heywood, 37; he opened his life to other ALS patients - The Boston Globe


A memorial service will take place at 3:00 PM on Sunday, December 3, 2006 at Grace Episcopal Church, 76 Eldredge Street, Newton Center, MA 02458.

In lieu of flowers the family asks that donations be made to ALS Therapy Development Foundation, 215 First Street, Cambridge, MA 02142.

For those who are traveling, the ALS Therapy Development Foundation has arranged for a block of rooms at the Sheraton Newton Hotel. For your convenience, there will be a shuttle from the hotel to the church for the service. To make reservations, please call 888-627-7179 or click the link below for online reservations.
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Cyberkinetics Honors Stephen Heywood, the First ALS Participant in BrainGate Clinical Trial
Nov 28 2006, 6:30 AM EST
BIOWIRE


Cyberkinetics Neurotechnology Systems, Inc. (OTCBB:CYKN; Cyberkinetics) issued a statement to honor Stephen Heywood, the first participant with advanced ALS (amyotrophic lateral sclerosis, or Lou Gehrig's disease) to participate in the Cyberkinetics' BrainGate Neural Interface System (BrainGate) clinical trial. Stephen, 37, died Sunday, November 26, 2006, as the result of respiratory failure that was unrelated to the BrainGate technology. Stephen enrolled in the pilot trial of the BrainGate System in January 2006.

"Stephen Heywood's participation in the BrainGate pilot trial can be compared to Orville Wright's first plane flight from the hilltop in Kitty Hawk, North Carolina. His efforts over the last year have demonstrated the potential of the BrainGate System to improve the lives of those with ALS and other motor neuron diseases," stated Timothy R. Surgenor, Cyberkinetics' President and Chief Executive Officer. "While we are saddened at Stephen's loss, we honor his courage and commitment to the advancement of our BrainGate technology and recognize him as a critical member of our development team. Stephen's indomitable spirit will keep us moving forward to develop the BrainGate technology to which he dedicated the last months of his life in order that people may ultimately lead more independent and productive lives despite their debilitating injuries and diseases."

"Stephen volunteered to participate in the clinical trial of the BrainGate technology because he believed it could change the world," added James A. Heywood, Chief Executive Officer and d'Arbeloff Founding Director of the ALS Therapy Development Foundation and Stephen Heywood's brother. "Following a recent BrainGate session in which he worked to control a robotic arm, Stephen sent me an email message that read: 'After being paralyzed for so long, it is almost impossible to describe the magical feeling of imagining a motion and having it occur.' Those with Stephen's pioneering spirit can see that the BrainGate technology, though only in its infancy, has the potential to enable those who are completely disabled to control computers, wheelchairs and robots with their minds. My family and I applaud the team at Cyberkinetics and the investors who support this valuable work for having the vision to bring this promising technology into reality."

In appreciation for Stephen Heywood's contributions to the development of Cyberkinetics' BrainGate technology, the Company will make a contribution to the ALS Therapy Development Foundation.

About the ALS Therapy Development Foundation

The ALS Therapy Development Foundation (ALSTDF) is a nonprofit biotechnology company that aggressively seeks out, develops and delivers promising therapies to slow, arrest and cure ALS. To learn more about ALSTDF or to make a donation, visit the foundation's website at www.als.net.

Press Release Source: ALS Therapy Development Foundation


Stephen Heywood 37, Dies; Subject of the 2006 Major Motion Picture - 'So Much So Fast'
Monday November 27, 10:11 pm ET


CAMBRIDGE, Mass., Nov. 27 /PRNewswire/ -- ALS Therapy Development Foundation CEO and d'Arbeloff Founding Director, James Allen Heywood, announces the sudden, accidental death of his brother, Stephen Heywood, 37.

(Photo: http://www.newscom.com/cgi-bin/prnh/20061127/NYM223 )

Newton, MA
Saturday, November 25, 12:49 PM

Dear Friends,
Friday morning at 5:30 I received the call from Wendy that I have gone to bed each night hoping would never happen. I could tell from the sound of her voice that this one was different. When I arrived, their small street was lit up with the flashing lights of two fire trucks, an ambulance, and a police car. Going inside past Wendy holding Alex in her arms and into his bedroom, I found Stephen. His vent had disconnected, his lips were blue and despite aggressive CPR he looked peaceful perhaps with even a slight trace of a smile. I rode to Newton Wellesley with the ambulance driver who also grew up in Newton and remembered Stephen from other visits.

Between Wendy, his caregiver and the EMT's, Stephen had CPR for over 40 minutes. I don't know if it is because he forgot that he was sick or because his heart is larger and stronger than any I have ever known but it restarted. You could actually see the disbelief on the ER team's faces. You also knew that they were not sure this was a good thing because Stephen's eyes were not responding at all. They wanted to make sure we understood how bad it was but they missed Stephen's point as people often do.

Stephen would tell a joke about wanting to die a heroic death. It went something like this. There would be a fire and he would save someone but it would have to be a slow fire with ramps because he would be in a wheelchair. I think he found a way to do that.

There is no blood flow to either hemisphere of his brain and he has no EEG signals. Stephen is gone, left in our hearts and in the relationships and structures he built. Stephen was in command of his world and his body at all times and never lived life on anything other than his own terms. Thursday night before bed he sent an email to Ben saying how wonderful our Thanksgiving was; it was a wonderful Thanksgiving.

Stephen has kept his body alive so that his family and friends could gather and say goodbye. As Stephen indicated he wanted to, he will donate his organs to others to give them a chance at the amazing years of life that he gave us. Sometime over the next few days if it is possible, some very lucky person will get his heart.


So he found his slow fire and it has ramps.

-- jamie


Newton, MA
Sunday, November 26, 11:03 PM

Stephen Update

This morning at 6:30 a.m. Stephen went into surgery after being declared legally brain dead. Wendy quietly sang "Arms of an Angel" by Sarah McLachlan, and then we walked him down as a group. His body fought for 2 days to enable him to donate his organs in the best way. As I write this two patients, age 33 and 47, are receiving his kidneys and are being given a chance at life. Stephens's heart stopped at 7:36 a.m. My family was all together at our parents'.

Stephen found a chance even in death to help others. He gave so much strength to so many.

This does not end here. Together with Stephens's spirit continuing to guide us, we will take this disease apart and destroy it.


-- jamie


Stephen John Heywood, 37; Master-Builder/Architect

NEWTON, Mass. -- From December 1998 when Stephen Heywood was diagnosed with ALS (amyotrophic lateral sclerosis, or Lou Gehrig's disease) to Sunday morning November 26, 2006 when he passed away with his family and friends Stephen lived a lifetime.

As his ALS progressed toward complete paralysis, Stephen, a vigorous artist builder, began a journey that compressed time. Over the past eight years he built and rebuilt three homes, including his own and a carriage house that is more art than structure. He trained apprentice craftsmen when he could no longer use his hands. He inspired others to imagine and build his designs when he could no longer use his voice. Stephen took joy in the feel of the materials and the art of the forms as they became reality.

Stephen married Wendy Stacy and together they built a family. They had a son, Alexander, in 2000 and together raised him to be a strong and caring child equipped with his first, full-sized power drill at the age of 2. Stephen was a most loving father and husband.

In 1999, Stephen and his brother Jamie founded ALS TDF, the world's first non-profit biotechnology company, now widely recognized as the leading edge in a new breed of institutions that are changing how treatments are developed for disease. Today, ALS TDF is the world's leading ALS research center and has defined new standards for quality and effective research.

Medically, Stephen's ALS progression was average for his age. Five years after diagnosis he opted for full-ventilator support to counter the degenerative effects of ALS. In 2000, he was the first patient in the world to receive a stem cells injection into the spinal fluid of his ventricle and lumbar cord. Stephen was resilient and often chose to participate in clinical trials for new drugs and genetic studies. And, for the last three years of his life was on an experimental drug discovered by the research team at ALS TDF.

Stephen was the impetus for PatientsLikeMe, a new online collaborative medicine company founded in 2005 by his brother Ben and friend, Jeff Cole. PatientsLikeMe was built to allow Stephen and other patients to share their disease progression and treatment regimens. With Stephen's inspiration, PatientsLikeMe is working to empower patients with all diseases to share their medical information and experiences to help improve treatment outcomes and quality of life.

Stephen embraced technology. His wheelchair, customized by his brother Jamie, is arguably the most advanced in the world with integrated power for his ventilator, computer, and even robotics which he could use to play with his son. Stephen was connected to his computer 24 hours a day enabling him to position any part of his body using the control system, and with the twitch of his jaw hit a variety of switches that kept him part of every conversation. The system ran Microsoft windows so every few hours or so Stephen would have to "reboot" himself.

Stephen's belief in the redemptive power of technology lead him to be the first ALS patient to have a brain implant as part of a clinical trial by the company Cyberkinetics. He was not so much the subject of the trial as he was a member of the development team using his signature humor to prod and drive his fellow engineers to new advances. Stephen inspired those around him to imagine the impossible, and then quietly challenged them to make it reality. In his last weeks he was able to achieve for the first time multi-axis control of a virtual robot arm by just imagining motion.

"Invincible." This is the word that has been used more than any other in the hundreds of emails received from around the world in the last day. Stephen's instant messenger and online handle were ALSKING and he was a constant presence on the phones and computers of his friends and family. Though Stephen's ALS was advanced, no one thought of him as a dying man. He inspired thousands of ALS patients not by fighting or living defiantly against the disease but by simply making it inconsequential -- it did not matter to him. There was no moment in Stephen's disease when he could not communicate and at no time was he not in control of every aspect of his life. Stephen lived his life and forgot his disease.

On Wednesday, Stephen took Alex to the barber where they both received haircuts, and on to the pet store to buy food for Alex's pet snake. On their way home, as Stephen did every week, he bought flowers for his wife Wendy. The holiday was with his family and friends. Watching Alex play he said, through his computer, "I am very lucky." His last email at 10:20 p.m. was to his brother Ben: "We had wonderful Thanksgiving. Elliot is incredible (referring to Ben's four-month old daughter)."

The cause of death was an accidental disconnection of his ventilator circuit at 5:00 a.m., the day after thanksgiving. The human and technological systems and backup systems failed. Between his wife Wendy, his caregiver and the EMT's, Stephen had CPR for over 40 minutes. Perhaps it is because his heart is so strong that it restarted despite the incredible odds against that happening. It was clear from the team at the hospital that his recovery was not necessarily a good thing because Stephen's eyes were not responding at all. There was no blood flow to either hemisphere of his brain and he had no EEG signals. Stephen was gone, left in the hearts of his family and friends and in the beauty of the structures he gave the world.

Stephen is survived by his wife Wendy Stacy Heywood, a son, Alexander, parents John and Peggy Heywood and Brothers James and Benjamin (Sherie); and nieces Zoe and Elliot, all of Newton.

A memorial service will take place at 3:00 p.m. on Sunday, December 3, 2006 at Grace Episcopal Church, 76 Eldredge Street, Newton Corner, MA 02458.

In lieu of flowers the family asks that donations be made to ALS Therapy Development Foundation, 215 First Street, Cambridge, MA 02142, http://www.als.net.

Stephen and his brother Jamie have been covered in "The New Yorker," "60 Minutes," "The Wall Street Journal," "The New York Times," "Science Magazine," and "The Economist."

Pulitzer Prize winning author Jonathan Weiner wrote a biography of Stephen and a chronicle of the early foundation of ALS TDF, by his brother Jamie, in "His Brothers Keeper."

Stephen's story is told in "So Much So Fast" a documentary now in limited nationwide release. Filmed over 4 years by Academy Award nominated Directors Steve Ascher and Jeanie Jordan, the Sundance celebrated film chronicles many of the amazing things Stephen has done and captures his humor, grace, and style in his own words.


Reference:

ALS TDF -- http://www.als.net
PatientsLikeMe -- http://www.patientslikeme.com
Cyberkinetics -- http://www.cyberkineticsinc.com
So Much So Fast -- http://www.somuchsofast.com
His Brothers Keeper -- http://www.jonathanweiner.com

CONTACT: James Heywood / Anthony Bernal
617-441-7222 / 617-733-3525




--------------------------------------------------------------------------------
Source: ALS Therapy Development Foundation

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Brian Thomas Wolfe Walter Antle Wall
Michael R. Hubbell Sharon Ambroso
Roderick Douglas Macleod John F. Malley
Robert Joseph "Bob" Marsh Victor Mezzo
James Clare Warner Robert R. Henderson
John Frederick Piquette Doyle Wade Mcclennen
Sarah Childs-Grebe Jean (Bradley) Stockwell
Albert Todd Jason A. Davis
Helen Elizabeth Edmisten J. Carl Coleman
Bill Singer Patricia Hamilton
Stephen L. Proctor Maureen Burke-Paolantonio, RN
Scott Fraza


Ezra Charles
David Niven
Jonathan Stone
Jacob Javitz

Edward M. Drost Sr., 79

Edward M. Drost Sr., a retired Crown Cork and Seal Co. supervisor and baseball fan, died Nov. 23 at Oak Crest Village in Parkville of amyotrophic lateral sclerosis, or Lou Gehrig's disease. He was 79.
Mr. Drost was born and raised in East Baltimore and graduated from City College in 1945. He served in the Marine Corps from 1945 to 1947 and earned a bachelor's degree from Loyola College in 1962.

While at City, he played second base, and in the late 1940s, he played professional baseball for several years as a third baseman for the minor league Danville Leafs in Virginia.

A highlight of his career, family members said, was attending spring training with the old Washington Senators.

"At the end of spring training, he was given his pink slip, and he returned to Danville," said a daughter, Julia D. Snyder of Raleigh, N.C.

Mr. Drost was a member of the City College Athletic Hall of Fame and was inducted into the Maryland Old-Timers Baseball Association Hall of Fame in 1984. In 1988, he was inducted into the Susquehanna League Baseball Hall of Fame.

He also officiated at local basketball games for more than 25 years.

Mr. Drost worked for more than 40 years at Crown Cork and Seal, retiring in 1991 as procurement supervisor. He subsequently worked part time for a decade for T.A. Gorman Co. Inc., a Rosedale engineering firm.

"He enjoyed working and said that this was his 'golf course,'" said another daughter, Elisa A. Gittings of Roswell, Ga.

Mr. Drost was a member of the Parkville Post of the American Legion and the Headquarters Marine Corps Association.

He was a communicant of St. Michael the Archangel Roman Catholic Church in Overlea.

A funeral Mass was offered Monday at the Parkville retirement community.

Also surviving are his wife of 50 years, the former Theresa H. Hock; a son, Edward M. Drost Jr. of Parkton; another daughter, Kristina D. King of Carney; and nine grandchildren.

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Anne Davis
Anne Karen Davis, 66, of Chattanooga, passed away Sunday, Dec. 3, 2006, at her home after a courageous four-year battle with ALS, Lou Gehrig’s Disease.

Born on Oct. 31, 1940, Karen lived a life full of joy and love. She was an active member of Brainerd Baptist Church and played clarinet in the church orchestra. She taught speech and English at both the college and high school level for many years as well as being part of the sales team at J.C.

Penny’s. She was a positive voice for the neighborhood where she lived.

Karen is survived by her husband of 37 years, Allen Hill Davis Jr.; daughters and sons-in-law, Helen and Bill Johnson, and Susan and John Lazenby; grandchildren, Emma Johnson, John and Kathryn Lazenby, all of Chattanooga; and sister, Helen Chouinard, of Hollister, Calif.

Visitation for the family will be held from 5:45 to 6:30 p.m. Wednesday, Dec. 6, 2006, at Brainerd Baptist Church, 300 Brookfield Ave., Chattanooga, TN 37411, (423) 624-2606. A memorial service will follow at 6:30 p.m.

Visit www.lane-southcrestchapel.com to send condolences.

I Corinthians 15:54 — "The perishable has been clothed with the imperishable, and the mortal with immortality... " "Death has been swallowed up in victory."

Arrangements are by the South Crest Chapel of Lane Funeral Home & Crematory.

Particle physics pioneer Bernard Gittelman, Cornell professor emeritus, dies at 74
By Lauren Gold


Bernard Gittelman, Cornell professor emeritus of physics, died in Ithaca Nov. 25 at age 74. The cause of death was amyotrophic lateral sclerosis (also known as ALS and Lou Gehrig's Disease).

Gittelman was a pioneer in the design and development of storage rings at the Wilson Synchrotron Laboratory. He led in the design and construction of the CLEO detector, the large multi-university collaboration devoted to exploiting the production and decay of new particles containing heavy quarks from the Cornell Electron Storage Ring.

"Bernie was one of the key reasons why Cornell and the CLEO collaboration led the world in heavy quark physics during the 1980s and 1990s," said friend and colleague Karl Berkelman, professor emeritus of physics at Cornell.

Gittelman earned his bachelor's degree and Ph.D. at the Massachusetts Institute of Technology, then worked as a research associate at Princeton University (1958-66) and Stanford University (1966-69), where he collaborated with Nobel laureate Burton Richter and colleagues to construct the first colliding beam device. He joined Cornell's faculty in 1969. In 1987 he was elected a fellow of the American Physical Society "for contributions to the design of storage rings and detectors as well as for contributions to the understanding of the physics of the production and decay of B mesons."

After his retirement, Gittelman continued his involvement with the CLEO research program in spite of his illness.

He is survived by his wife, Sandra, and three children.
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Ex-Saints CEO Thom Clark dies
The Lowell Sun
Article Last Updated:12/03/2006 09:53:39 PM EST


Thomas Clark, the executive who led Saints Medical Center from the red to the black while maintaining a hearty outlook and holding close the hospital's Catholic mission, died Saturday evening at his home in Westwood.

He was 63 and is survived by his wife, Lloyd, and four grown children, two sons and two daughters.

Clark, Saints' president and CEO for 10 years, died following a long battle with amyotrophic lateral sclerosis, or ALS, also known as Lou Gehrig's disease, said his good friend and Saints Chief Financial Officer Thomas Klessens.

Klessens called Clark "bigger than life" and "a Southern gentleman."

Clark left Saints (then known as Saints Memorial Medical Center) in June 2005 on indefinite medical leave. He officially retired two months later. He was replaced a year ago by Michael Guley.

An affable man with a shock of gray hair and an accent that betrayed his Southern roots, Clark was known for his communications skills, ability to lead, optimism and a forcefulness for getting results. And a profound love of golf.
In all, he compiled three decades of experience as a health-care executive.

His decade at the helm of Saints began in March 1995

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Post Script: Despite disease, teacher never lost his spirit of adventure
By STACI DENNIS, Correspondent
© December 5, 2006



NORFOLK - Bill Sams Jr. was a romantic at heart.

He proposed at the top of the Eiffel Tower and recited wedding vows in a private ceremony under an apple tree in Vermont.

"He was my adventure buddy," said his wife, Elizabeth McDowell. "He was creative and fun, but most of all, he just loved to travel."

McDowell said they would work and save money for trips. They would plan where they wanted to go and do what it took to get there, she said.

Sams, who died Nov. 20 at age 42 after battling ALS, commonly known as Lou Gehrig's disease, since 2001, didn't let his diagnosis slow him down. Even after he was in a wheelchair, the couple visited The Biltmore Estate in Asheville, N.C. It was their last trip together.



Sams and McDowell married five years ago, but their adventures together date to their college years. After the couple graduated, they spent the summer in Maine working to raise money to live in the West Indies for six months.

"When we finally reached the remote beach where we were going to live, his eyes got so wide and a huge grin spread across his face," McDowell said. "Out of everywhere we ever went, that was his favorite place."

In addition to his global travels, Sams also spent time traveling with his friends. One of his favorite destinations was South Carolina - to pick up fireworks.

"He didn't care if he was in a wheelchair or what," said longtime friend John Hickey. "He commanded us into the car and didn't let up until we picked up the fireworks."

Sams' father, Skip, said his son's adventures started early and he never lost his boyhood imagination. "He was a kid at heart," he said.

When Sams was 12, he brought home a few ducklings that had been separated from their mother.

Sams nurtured the fowl, even helping them learn to swim in the bathtub.

"They started following him around like they would have their own mother," Skip Sams said. "The next thing I know, he's telling me he wants a gorilla."

McDowell says Sams never lost that sense of adventure, even days before his death.

"He told me he wanted to refinish the boat his dad gave him and take it out on the ocean," McDowell said about a 1955 vintage speedboat he got from his dad as a teenager. "He was never one to let a dream die."


Reach Staci Dennis at postscripts@pilotonline.com.

David Abell
David A. Dx 6/96, PEG 10/99, Vent 1/00
Oswego, IL
Don't forget to live!
http://hometown.aol.com/abe11/Davesindex.html



David Earned His Wings Today
http://health.groups.yahoo.com/group.../message/43911




http://hometown.aol.com/abe11/Davesindex.html

A Newspaper article about me.


Oswego & Montgomery IL.
"The Sun"
Friday, May 5, 2000
By Stacy M. Strunk
SUN CORRESPONDENT
When Oswego resident David Abell was diagnosed with amyotrophic lateral sclerosis (ALS) in 1996, it brought his naval career to a premature end. It began as a weakness in his right hand that would eventually spread to his left hand and then his legs. He didn't realize, at first, that ALS becomes both jailor and executioner for most patients.
"I didn't think I was going to die," said David. "I thought there would be a prescription that will take care of it."
ALS, more commonly known as Lou Gehrig's disease, is a progressive neuromuscular disease in which specialized nerve cells controlling movement of voluntary muscles gradually cease functioning and atrophy.
Eventually, the paralysis will also affect the muscles used in breathing and the patient will die of respiratory problems. According to the Les Turner ALS Foundation, the average survival rate is three to five years, although many people live 10 or even 20 years after a diagnosis is made.
No matter how severe the paralysis becomes, an ALS patient maintains his sensations, vision, sexual function and intellect.
"Because the muscles are withering and atrophying, they become prisoners in their own bodies," said Jerry Abell, David's father.
There is no cure, but many of the symptoms are treatable and new drugs are being tested all the time. For instance, David took part in a drug study at Northwestern University Center for Clinical Research. He was testing Sanofi, which was supposed to slow the progression of ALS.
There are also new technologies available that make living with ALS easier. Abell's doctor recommended he buy a computer to help him keep busy.
He has an Eyegaze System, which uses his eye movements to control the computer. By looking at control keys displayed on a screen, he can synthesize speech, control the lights and appliances in his home, type, operate a phone, run computer software and access the Internet and his e-mail.
"I use Eyegaze for all of the above," said David. "It is my link to the world."
"I got info on ALS from the Internet," he said. "I contacted the MDA. They were very helpful. And I slowly began to accept the fact that I was losing my physical abilities."
The computer system was a blessing for David, said Jerry. Until he received the system, his father had to Velcro the computer mouse to David's left hand, which still had a little strength in it.
"It has been frustrating at times," said David, "but I try to focus on what I can do rather than what I can no longer do. I've had to accept help and re-evaluate what is important in life."
Help from others
Help has come in many forms. The ALS Association provided books on ALS management and other resources. The Paralyzed Veterans of America have helped him receive his Veterans Administration benefits. And the V.A. provides David with medical care.
"Although it is 40 miles away and frustrating dealing with all the paperwork and bureaucracy, I don't know how I would afford all of the services I receive without the V.A.," he said.
The V.A. helped build his wheelchair-accessible home and buy a van with a wheelchair lift. It also provided a powered wheelchair, a ventilator and the computer he uses for everything.
Even with the help David receives, it isn't easy dealing with ALS, especially for the people who love him.
"It hasn't been a good situation," Jerry said. "But we've gotten to know each other a lot better, I know that."
David said re-evaluating his priorities has reminded him how grateful he is for his family and friends, many of whom are taking part in a fund-raiser for the Les Turner ALS Foundation. The Tag Days fund-raiser on Saturday and Sunday in Montgomery and Oswego will raise awareness and money for the treatment of ALS. Similar fund-raisers will be taking place throughout Chicago during May.
"If there is going to be a cure for ALS, it is going to require money from private donations," said David. "The government can only do so much."
"With the advances being made in research and medicine today, there is hope that a cure will be found in the near future," he said.
For now, David said, he will continue to make the most of the time he has.





I have had a trach & ventilator since Jan. 2000. I use a Shiley 6cfs cuffless trach & I can still talk. My speech is not clear because of my tongue weakness but my volume is better because the vent gives me more air. I had a peg G-tube put in before the trach (Oct. 99) and haven't eaten by mouth since then because of swallowing troubles but I can still drink Pepsi or water if I want. I have to tuck my chin down to swallow & I don't take a lot. I use an Nellcor Puritan-Bennett LP-10 Ventilator. It is small enough to fit on the back of my wheelchair and has an internal battery backup and an external battery that can go for 6 - 8 hours so I can go out and about. Having a vent is not as hard as many think. It requires some training to learn how to operate and suctioning but my family and caregivers were able to learn fairly quickly. I'll be happy to answer any questions about ALS.


Take care,
David


I created a page and means to recognize our friend David. You may wish
to make a donation in memory of David elsewhere, but I wanted to make
sure that there is a place where donations that will benefit PALS can
be made in his memory. Go to: http://web.alsa.org/goto/David.Abell

Gamboachuck aka Chuck Hummer

John Mahan, Santa Clara civic leader
By Julie Patel
Mercury News
John Mahan was a quiet but powerful force in the valley for five decades, as a Santa Clara councilman and a civic leader.

``He wasn't the most talkative council member, but when he talked, everyone listened,'' Santa Clara City Manager Jennifer Sparacino said of Mr. Mahan's time on the council in the 1970s and '80s.

Mr. Mahan died Monday at a VA Palo Alto Health Care System facility after a yearlong battle with Lou Gehrig's disease, amyotrophic lateral sclerosis.

A devout Catholic, Mr. Mahan graduated from Bellarmine College Preparatory in San Jose. He joined the U.S. Navy, serving three years during World War II, then attended San Jose State University. In 1948, he married his high school sweetheart, Laura, whom he had met on a summer cannery job.

As the couple raised three daughters, Mr. Mahan managed an electronics and appliance store and volunteered for various city commissions.

Mr. Mahan, whose father died when he was 3, worked at his grandparents' bakery in San Jose as a teenager. His mother, a teacher, worked at the bakery, too, and the family spent many holidays baking turkeys and hams ordered by customers.

``They worked hard together and had fun together,'' said his daughter, Santa Clara Mayor Patricia Mahan.

Mr. Mahan served two terms on the city's Civil Service Commission, two terms on the Planning Commission and 11 years on the council, after he was appointed for a one-year term.

He was also a Santa Clara Unified School District board member. He joined the Santa Clara Host Lions Club in 1958 and during the 48 years that he was in the club served as secretary, treasurer, president, deputy district governor and district governor. He had many years of perfect attendance at club meetings. He was also an active volunteer for the club's Blind Center.

Patricia Mahan said she knew about ``Dad's meeting nights'' as a girl but didn't fully appreciate his role in the city until she grew older and was inspired to serve on the student council, the planning commission and the community college board, and eventually the city council.

``It wasn't ever about him, it was about what's best for everyone. He led by serving other people,'' she said.

Colleagues say Mr. Mahan was thoughtful, reflective and articulate.

``People respected him for that, they looked up to him, and they looked to him for leadership,'' Sparacino said.

About 20 years ago, the council was divided on whether the city should borrow $130 million to buy Great America amusement park, blocking a developer's plan to turn the site into an office park. After a lot of thought, Mr. Mahan cast the deciding vote to approve the deal.

``He didn't just make decisions intuitively. He worked at it,'' Sparacino said. ``He asked what all our options are, what are the costs, what's at stake?''

The city eventually sold the theme park but kept the land. It paid off its debt last year and is now getting $5.3 million in annual rent from the park operators.

With the San Francisco 49ers' plan to propose a new stadium in Santa Clara early next year, Patricia Mahan will confront some of the same issues her father faced when the Giants wanted to build a ballpark in the city in the late 1980s.

``Considering what the Giants seem to want, and what I don't think we have, I'm trying to find out if it's worth our time to pursue this,'' Mr. Mahan told the Mercury News in 1988, his last year on the council. Two years later, voters in more than five cities in the county shot down a tax increase that would have helped pay for the park.

Patricia Mahan said that despite the time her father devoted to public life, he spent a lot of time at home, too. She remembers him making banana pancakes and German foods, like sauerbraten and rabbit. He also seemed to know something about almost every subject she studied.

``He could help me with anything except French -- math, geography, you name it,'' she said. In recent years, she said he was even more computer-savvy than she.

Mahan said her son, Colin, was a troublemaker when he was 3, but he seemed to mellow around his grandfather.

``Why are you such a good boy with Grandpa?'' she asked the toddler. ``He said something like, `Mommy, Grandpa just has a way about him that's kind and gentle.' ''

John Mahan

Born: April 30, 1924, in San Jose

Died: Dec. 4, 2006, in Palo Alto

Survived by: wife, Laura of Santa Clara; daughters, Regina Mahan Visger and Patricia Mahan of Santa Clara, and Bernadette Mahan White of Danville; and grandchildren, Nick and Teddy Visger, Colin Boyles, and Katherine and Allyson White.

Services: Pending

Memorial: VA Hospital in Palo Alto, 3801 Miranda Ave., Palo Alto, Calif., 94304.

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Thomas Edward Shimon


Thomas Edward Shimon, age 57, of 1326 N. 27th Street, Sheboygan, died at his home Wednesday morning, December 6, 2006, as a result of Amytropic Lateral Sclerosis (ALS), also called Lou Gehrig's Disease.


A Mass of Christian Burial for Tom Shimon will be celebrated at 10:00 a.m., Saturday, December 9, 2006, at St. Dominic Catholic Church, 21st Street and Geele Avenue, Sheboygan. Visitation of family and friends will be held at the church from 9:00 a.m. until time of the Mass at 10:00 a.m. The Rite of Committal and interment will take place at 2:00 p.m., Sat. Dec. 9th, at St. Mary's Cemetery in Reedsville.


A complete obituary will be placed in Friday's edition of The Press.


The Sheboygan Press


December 7, 2006

Thomas Edward Shimon


Thomas Edward Shimon, age 57, of 1326 N. 27th Street, Sheboygan, died at his home Wednesday morning, December 6, 2006, as a result of Amytropic Lateral Sclerosis (ALS), also known as Lou Gehrig's Disease.


Tom was born at Holy Family Memorial Hospital in Manitowoc on May 15, 1949, a son of Norbert E. and Irene M. (Vondrachek) Shimon. He attended Holy Rosary Catholic School in New Holstein and was a 1967 graduate of New Holstein High School.


Tom served in the U.S. Navy from Sep. 20, 1968 to Sep. 19, 1974. An Electronics Technician Second Class (ETR2), he was primarily assigned to the destroyer tender, USS Samuel Gompers (AD-37), known by her crew as "Fast Sam." The ship was homeported in San Diego, CA, and was deployed to the Philippine Islands, Taiwan, and Vietnam in the western Pacific (WESTPAC).


On May 1, 1971, Tom was united in marriage to Linda Lee Hauch at St. Dominic Catholic Church in Sheboygan. From 1975 until his retirement this year, Tom was the manager of Aladdin's Castle in Sheboygan.


Tom was a member of St. Dominic Catholic Church. He was an active member of the American Legion, Prescott-Bayens post 83, in Sheboygan. He served as post commander from 1989 to 1991, and he worked in Badger Boys State. In the early 1990s, Tom served as the coordinator for the Memorial Day parade and activities in Sheboygan.


An accomplished chess player, Tom was a true student of the game. He was an avid sports fan who thoroughly enjoyed all aspects of the game, especially the strategy of fantasy leagues. He also had a passion for creative and unique home renovation.


Tom is survived by his wife, Linda; his father, Norbert Shimon of New Holstein; a daughter and her husband, Heather Shimon and Brian Turany of Madison; a son and his wife, Keith and Jennifer Shimon of Grafton; a brother and his wife, William and Susan Shimon of Appleton; his father-in-law and mother-in-law, Robert and Shirley Hauch of Sheboygan; a brother-in-law and his wife, Robert and Marie Hauch of Sheboygan; and two sisters-in-law and husbands, Pamela and Peter Behrensprung of Sheboygan, and Cynthia and David Potter of New Jersey. He is also survived by loving aunts, uncles, nieces, nephews, other relatives, as well as good friends, especially close friend, Ruth Neisius.


He was preceded in death by his mother, Irene Shimon on February 22, 1979, and a brother, Gary Charles Shimon on October 23, 2006.


A Mass of Christian Burial for Thomas Edward Shimon will be celebrated at 10:00 a.m., Saturday, December 9, 2006, at St. Dominic Catholic Church, 21st Street and Geele Avenue, Sheboygan. The mass will be celebrated by Rev. John Radetski, pastor of St. Dominic Catholic Church, and Rev. Daniel Lasecki, pastor of St. Thomas Aquinas Catholic Church in Elkhart Lake. Visitation of family and friends will be held at St. Dominic Catholic Church on Saturday, Dec. 9th, from 8:30 a.m. until time of mass at 10:00 a.m. The Rite of Committal and interment will take place at 2:00 p.m., Sat. Dec. 9th, at St. Mary's Cemetery in Reedsville.


Memorials are appreciated for the ALS Association Certified Center at the Medical College of Wisconsin/Froedtert Hospital in Milwaukee or the Neurology Dept. at the Clement J. Zablocki VA Medical Center in Milwaukee.


The family of Tom Shimon deeply appreciates the professional, kind and compassionate care he received from the nurses in the Intensive Care Unit at St. Nicholas Hospital and the nurses of Aurora Visiting Nurses Association, specifically Tonya Smith. They also wish to thank all the members of St. Dominic Catholic Church for their prayers and support.


Shimon Funeral Home of Hartford is directing services, and Novak-Ramm-Ziegler Funeral Home of Sheboygan is providing assistance.


The Sheboygan Press


December 8, 2006

Custodian remembered for love of racing


By JILLIAN COMPTON - jcompton@nwherald.com
Comments (1)
WOODSTOCK – Charles Kayse died slowly in the same room from the same disease that killed his mother four years ago.

For him, Amyotrophic Lateral Sclerosis, also called ALS or Lou Gehrig’s disease, started in his hands and arms, bringing spasms that made holding a cigarette or cup of coffee impossible.

Kayse, 52, died Wednesday at home.

He knew what he faced before doctors diagnosed him in June 2005, but his father remembered a few jokes he used to make while the disease was still in the early stages.

“He said: ‘I’m going to live 10 years, because I got the long kind,’ ” John Kayse Sr. said.

Before the illness, he worked for a decade as a third-shift custodian at McHenry County College.

During the day, he worked in the yard, played with his children and delivered newspapers, often sleeping only two or three hours a day, his family said.

He loved NASCAR driver Jeff Gordon and Elvis Presley and insisted on wearing long sideburns and watching NASCAR races every Sunday. His daughter, Cammi, 17, taught him to play guitar, and he serenaded his wife, Betty, with “Love Me Tender” on her birthday last May.

As Kayse’s disease progressed, he needed 24-hour care, so his father sat with him during the day, and Cammi slept on a nearby couch at night. The family kept the same promise they made his mother: Neither of them ever spent time in a nursing home.

Health insurance didn’t cover all his medical expenses, so a McHenry County College union social committee organized two luncheons that raised about $6,200. The Illinois Federation of Teachers Local 1642 donated $500 this summer, and the college’s Harmony Committee is planning to set out a box for donations at the holiday party next week.

The response was overwhelming, even though few people at the college had ever met Charles Kayse, said Amy Carzoli, who organized most of the efforts.

“In fact, it’s been incredibly heart-warming to see how many people are willing to donate time and money,” she said, “to someone they don’t know but who they feel a connection to through MCC.”
http://www.nwherald.com/articles/200...e559322939.txt

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Oboe Master Gomberg Dies At 85

Ralph Gomberg, one of the top oboists in the United States and a fixture of the Boston Symphony's woodwind section for 37 years, has died at 85.

Gomberg died last weekend at a hospice in Wayland, Mass., of primary lateral sclerosis, a neuromuscular disease better known as Lou Gehrig's disease, said his wife of 58 years, Sydelle Silver Gomberg.

Gomberg played with the Boston Symphony Orchestra from 1950 to 1987.

He taught at the Peabody Institute in Baltimore; the New England Conservatory; Boston University and the Berkshire Music Center. Many of his former students are principal oboists of U.S. symphony orchestras, the Boston Globe said.

Gomberg was born in Boston's West End, the youngest of seven children. Several of them were as musically talented as he was and also played professionally.

He used to joke that it would be daunting to find a quiet room in which to practice.

Gombenrg is survived by his wife, three daughters and seven grandchildren.