America's heroes hit hard by Lou Gehrig's disease
By: Kathryn Bursch





Bill Motley



Dunedin, Florida - Bill Motley is proud of his Army service in Vietnam. He's glad he got out alive to raise six kids. But Motley's military past may now be haunting him.

Like many other military veterans, Motley has Amyotrophic Lateral Sclerosis or Lou Gehrig's disease. He remembers the exact moment four years ago when he got the news.

"Very, very emotional; you actually see your life flash before you," he says.

There is no cure for ALS, which slowly robs the body of movement. And while he can still walk and talk, Motley intends to fight for stricken veterans.

"There's a purpose why we're on this earth and who knows, my purpose may be to bring awareness to this disease."

Several studies show that people who have served in the military are at greater risk for developing ALS and the ALS Association says researchers need to find out why.

"It steals your freedom," says Kamden Alexander, a spokesperson for the ALS Association. "It steals the freedom from the very people who fought for our freedom."

And this weekend, another Florida veteran intends to spread awareness mile by mile. Ken Patterson will ride his motorized wheelchair on roads from Orlando to Washington, D.C. Patterson will deliver letters signed by veterans urging lawmakers to fund more research.

Motley signed several of those letters. He served his country and now he hopes his country will serve him.

"You lay your life on the line. You come back home and you think, 'I've done a good job,'" and then thinking about his fatal disease, Motley holds back tears, "It's like a double whammy."

For more information on ALS and Florida Chapter activities, click here.
To read about ALS and the possible military connection, click here.
For more on Ken Patterson's wheelchair trip to Washington, click here.

http://www.tampabays10.com/news/loca...?storyid=78457

U.S. Troops Battle Mental-Health Crisis
300,000 Face Depression, PTS, Report Says
POSTED: 12:23 pm EDT April 17, 2008 UPDATED: 4:12 pm EDT April 17, 2008


Some 300,000 U.S. troops are suffering from major depression or post traumatic stress from serving in the wars in Iraq and Afghanistan, and 320,000 received brain injuries, a new study estimates.
Only about half have sought treatment, reports the study released Thursday by the RAND Corporation.
The 500-page study is the first large-scale, private assessment of its kind -- including a survey of 1,965 service members across the country, from all branches of the armed forces and including those still in the military as well as veterans who have left the services.
The study finds about 19 percent of forces serving in Iraq and Afghanistan reported brain injuries. In wars that involve blasts from roadside bombs, such injuries can range from mild concussions to severe head wounds.
Its results appear consistent with a number of mental health reports from within the government, though the Defense Department has not released the number of people it has diagnosed or who are being treated for mental problems.
The Department of Veterans Affairs said this month that its records show about 120,000 who served in the two wars and are no longer in the military have been diagnosed with mental health problems. Of the 120,000, approximately 60,000 are suffering from PTSD, the VA said.

http://www.newsnet5.com/health/15911157/detail.html

Sole surviving son denied health benefits post-Iraq
By GARANCE BURKE – 1 day ago

FRESNO, Calif. (AP) — Forced to leave the combat zone after his two brothers died in the Iraq war, Army Spc. Jason Hubbard faced another battle once he returned home: The military cut off his family's health care, stopped his G.I. educational subsidies and wanted him to repay his sign-up bonus.

It wasn't until Hubbard petitioned his local congressman that he was able to restore some of his benefits.

Now that congressman, Rep. Devin Nunes, is leading an effort to pass a bill that would ensure basic benefits to all soldiers who are discharged under an Army policy governing sole surviving siblings and children of soldiers killed in combat. The rule is a holdover from World War II meant to protect the rights of service people who have lost a family member to war.

"I felt as if in some ways I was being punished for leaving even though it was under these difficult circumstances," Hubbard told The Associated Press. "The situation that happened to me is not a one-time thing. It's going to happen to other people, and to have a law in place is going to ease their tragedy in some way."

Hubbard, 33, and his youngest brother, Nathan, enlisted while they were still grieving for their brother, Marine Lance Cpl. Jared Hubbard, who was 22 when he was killed in a 2004 bomb explosion in Ramadi.

At their request, the pair were assigned to the same unit, the 3rd Brigade of the 25th Infantry Division in Hawaii, and deployed to Iraq the next year.

In August, 21-year-old Cpl. Nathan died when his Black Hawk helicopter crashed near Kirkuk. Jason was part of the team assigned to remove his comrades' bodies from the wreckage.

Hubbard accompanied his little brother's body on a military aircraft to Kuwait, then on to California. He kept steady during Nathan's burial at Clovis Cemetery, standing in dress uniform between his younger brothers' graves as hundreds sobbed in the heat.

But Hubbard broke his silence when he found his wife, pregnant with their second child, had been cut off from the transitional health care the family needed to ease back to civilian life after he was discharged in October.

"This is a man who asked for nothing and gave a lot," said Nunes, R-Calif., who represents Hubbard's hometown of Clovis, a city of 90,000 next to Fresno. "Jason is one person who obviously has suffered tremendously and has given the ultimate sacrifice. One person is too many to have this happen to."

Hubbard went to Nunes, who began advocating for the former soldier in December, after hearing the Army was demanding that he repay $6,000 from his enlistment bonus and was denying him up to $40,000 in educational benefits under the GI bill.

After speaking with Army Secretary Pete Geren, Nunes got the repayment waived, and a military health policy restored for Hubbard's wife.

But the policy mandated that she be treated at a nearby base, and doctors at the Lemoore Naval Air Station warned that the 45-mile trip could put her and the fetus in danger. Hubbard said doctors offered alternative treatment at a hospital five hours away.

Meantime, Hubbard and his 2-year-old son went without any coverage for a few months.

The Hubbard Act, introduced Wednesday, would for the first time detail the rights of sole survivors, and extend to them a number of benefits already offered to other soldiers honorably discharged from military service.

The bill — co-sponsored by Rep. Jim Costa, D-Calif., Sen. Dianne Feinstein, D-Calif., and Sen. Saxby Chambliss, R-Ga. — would waive payback of their enlistment bonuses, allow them to participate in G.I. educational programs, give them separation pay and access to transitional health care.

"I'm honored to be a part of this process, and although it's me that is involved directly, it's more than that. There are numerous other people out here who have been discharged under this sole survivor code," Hubbard said in a phone interview from Washington, where he joined lawmakers who introduced the bill Wednesday.

The Department of Defense has identified 52 sole survivors since the Sept. 11 attacks.

Meanwhile, Hubbard, his wife Linnea and his son Elijah, have permanent health coverage now that he is once again working as a Fresno County sheriff's deputy, the job he left in 2004 to serve in Iraq.

The Army will adopt to any changes in policy springing from the legislation, Army spokesman Maj. Nathan Banks said.

"Foremost the Army itself sympathizes with him for the loss of his brothers," Banks said. "We will do everything within our means to rectify this issue. He is still one of ours."

Hubbard's father, Jeff, said that resolving the family's bureaucratic difficulties would provide some comfort, but would not help lessen their pain.

"We're still very much deeply involved in a grieving process. We're pretty whacked," he said. "This doesn't relate back to the loss of our boys, it can't, but we would consider it a positive accomplishment."

Bobby - Thanks for posting this information. Ken is truly a special person for doing this ride to DC. I am in awe of his determination as well as inspired.

My DBF's step dad has ALS and even though I generally am on the MS forums (I have MS) I pop in here every now and then to learn more about this terrible disease. I know 3 people that are or have suffered from ALS and I truly hope they find a cure for it as well as a way to slow the disease down.

Again, thank you so much for posting this. I will be keeping Ken in my prayers as he makes his journey up to DC.

Here is another related article...


There are more interesting links at the bottom of the article.

ALS Risk Appears Increased in Veterans: New Government Report Agrees
Roberta Friedman, Ph.D., Research Department Information Coordinator
Pat Wildman, Director Communications and Public Policy
[Quick Summary: A new report from experts convened by the Institute of
Medicine agrees with prior conclusions that U.S. military veterans appear to
have increased risk of developing ALS. The report recommends additional
research to further assess the relationship between ALS and military service and
determine what factors of military service may cause the disease.]

The Institute of Medicine (IOM) has issued a new report from experts supporting
an association between military service and later development of ALS.
Published reports reviewed by the experts show up to a two fold increased risk
of developing amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s
disease) among veterans deployed in the Persian Gulf War of 1991. Veterans from
other eras, dating from World War II to post Vietnam, also appear to be at
greater risk of developing ALS.
“A diverse panel of experts was able to conclude that existing evidence
supports the increased risk for veterans,” said Lucie Bruijn, Ph.D., science
director and vice president of The ALS Association. “We intend to continue our
efforts to help veterans and to continue to search for the cause and effective
treatment of ALS.”
The ALS Association has worked with Congress and the Administration to
increase funding for ALS research, including research seeking to determine why
veterans are at greater risk of the disease. When the first studies were
published that found a link between ALS and service in the 1991 Persian Gulf
War, The Association strongly supported former Secretary Anthony Principi’s
policy to aid Gulf War veterans with ALS. Under that policy, ALS is considered
a service-connected disease for those veterans who served in the Gulf War
between August 2, 1990 and July 31, 1991.
However, ALS is not presumed to be a service-connected disease for the
thousands of other veterans diagnosed with ALS even though research has
demonstrated elevated rates of ALS in all veterans, regardless of whether they
served in the 1991 Gulf War.
“The IOM’s conclusions help to validate what the ALS community knows all too
well – that if you served in the military, you are more likely to die from ALS,”
said Steve Gibson, vice president of Government Relations and Public Affairs for
The ALS Association. “We strongly support calls for expanding ALS research at
both the Department of Veterans Affairs and the Department of Defense. We also
believe that ALS should be considered a service connected disease regardless of
when a veteran served in the military. And we hope that the Members of the
newly elected 110th Congress will join our fight in support of all veterans with
ALS.”
Four studies have found evidence of the increased risk of ALS in military
veterans, both those who served in the Gulf War and those with any history of
military service, the IOM committee reported. The risk is as much as twice that
in the general population.
Of particular importance, the IOM reviewed a study conducted by researchers
from Harvard University ’s School of Public Health that found that veterans who
served in the military, whether World War II, Korea or Vietnam, are at greater
risk of ALS. According to the IOM report, “[T]he implication is that military
service in general – not confined to exposures specific to the Gulf War – is
related to the development of ALS. The findings, if validated in other studies,
suggest that exposures during military service, even among those with no wartime
service, might be responsible.”
The committee called for new, high quality studies to further investigate the
connection between ALS and military service and to examine those aspects of
military service that may cause the disease.

Factors that might feed into the increased risk of ALS in veterans include
exposure to lead, pesticides or other environmental contacts, use of tobacco or
alcohol or extreme physical exertion.The ALS Association has recognized the need
for larger population based studies and is working with Congress to pass the ALS
Registry Act (HR 4033/S. 1353), legislation that would establish a national ALS
registry at the Centers for Disease Control and Prevention. The registry would
collect data about ALS that could provide vital clues into the causes of the
disease, including why veterans may be at greater risk.
Experts who served on the committee for the report were Richard T. Johnson,
M.D. (chair), Johns Hopkins University, Baltimore, Walter Bradley, D.M.,
University of Miami, Florida, Beate Ritz, M.D., Ph.D., M.P.H., University of
California, Los Angeles, Walter A. Rocca, M.D., M.P.H., Mayo Clinic, Rochester,
Minn., Jeremy Shefner, M.D., Ph.D., State University of New York at Syracuse,
and Christina Wolfson, Ph.D., McGill University, Montreal.

A report issued by the IOM in September was unable to find evidence that
supports the idea of a Gulf War Syndrome but did agree that existing evidence
shows increased risk of ALS among Gulf War veterans (the report is available at
http://www.iom.edu/CMS/3793/24597/36955.aspx).
Copies of the latest IOM report, “Amyotrophic Lateral Sclerosis in Veterans:
Review of the Scientific Literature,” are available from the National Academies
Press; tel. 202-334-3313 or 1-800-624-6242 or on the Internet at
http://www8.nationalacademies.org/on...RecordID=11757.

See The ALS Association’s web site under the research tab for further
information about environmental factors in ALS. Copies of The ALS Association
report: “ALS in the Military: the Unexpected Consequences of Military Service”
also is available at http://www.alsa.org/files/pdf/ALS_Military_Paper.pdf.

For
additional information about The Association’s advocacy efforts to support
military veterans, contact The Association’s Capital office at 202-638-6997.

Ladies and Germs,



It’s here. The day y’all have been waiting for. Yours truly is taking the trip of a lifetime. Man, it has been a hectic last three weeks, watching Glenda run around like a chicken with her head cut off has really been tiring for meJ. Actually, I’ve been conducting interviews and being filmed for TV news. So far I have interviewed with News 13, Channel 9 (an ABC affiliate), WKMG Local 6 (a CBS affiliate) and the Orlando Sentinel…look for that one tomorrow.



So this is the schedule of events. We will get up at 6am (I thought I was done with getting up that early) tomorrow morning. We will take part in the Walk to Defeat ALS in Orlando’s Blue Jacket Park. Around noon I will head out to Washington DC, expecting to arrive on May 9th or 10th, depending on the weather. I will update a blog daily, you can find it at www.rolloverals.org and selecting the daily journal link. You can post to the link too, so if you have any comments or questions, leave them there and I will get back to you as soon as possible. If anyone wants to join me for part of the ride let me know and we will make arrangements.



OK, this is the sappy part. When being interviewed for one of the TV stations they asked me what I wanted to do when I had ALS. I wanted to run and hide from everyone, which is what I did. I probably ran and hid from some very good friends of mine, and for that I apologize. I won’t make any excuses, if you sent me an email and I didn’t answer, send me another one…I will answer it when I get a minute.



Sorry so short, I got another interview at 9:30 with Fox 35. Keep me and my family, including my buddy that just had his dad pass away, in your prayers.



Love y’all



Living despite ALS,

Ken Patterson Sr

kensr@kensjourney.com

http://kensjourney.com

How can we connect the dots if we don't collect the dots?

Lou Gehrig's disease patient takes to D.C

Kate Santich | Sentinel Staff Writer
April 19, 2008
While Ken Patterson still has a voice -- before he is completely bedridden and fed through a tube -- he wants answers.

The former Army sergeant wants to know why those who've served in the military are twice as likely to get Lou Gehrig's disease as those who haven't served. And he wants to know what the politicians controlling research funds are going to do about it.

"They worry more about giving little blue pills [Viagra] to old men than the 30,000-plus people with this disease," said Patterson, 39, of Titusville.

Today, Patterson begins a 940-mile journey from Orlando to Washington in his battery-powered wheelchair. Traveling 50 miles and 10 hours a day -- with his wife, Glenda, trailing him in a van -- he plans to collect letters from other patients and carry them to Capitol Hill, raising awareness along the way.


"Somebody has to do it," he said. "Why not me?"

Patterson has amyotrophic lateral sclerosis, better known as ALS or Lou Gehrig's disease -- a fatal neurological disorder that progressively robs its victims of the ability to walk, speak, move and, eventually, breathe. It leaves a perfectly alert mind in a shell of a body.

Despite numerous studies showing that ALS is more common among veterans and a 5-year-old ALS registry by the Department of Veterans Affairs that now has 1,800 names, funding to unravel the mystery is still meager. This year, the Department of Defense has requested $5 million to study possible treatments.

"We're happy to get it, but $5 million is nothing in the realm of medical research," said Lucie Bruijn, national science director and vice president of the ALS Association. "We can absolutely use more. I think what he [Patterson] is doing is fantastic."


Not 'going to crawl in a hole'

Since his diagnosis with ALS in November 2006, Patterson has had plenty of time to consider potential culprits.

Was it the jet fuel he was exposed to as a paratrooper? Did it have anything to do with being a gunner on an anti-tank missile system? Was it all the vaccines he was given -- as many as a dozen at a time? Or perhaps the exposure came later, in his work as a safety engineer for the Kennedy Space Center.

"You don't have enough space to write all the possibilities," he said, his words already slurred from the disease.

A one-time firefighter and paramedic, Patterson first went to a doctor in late 2005 for what he thought was a bad case of carpal tunnel syndrome. His right hand hurt all the time, and his grip was slipping. He couldn't turn his ignition key without using two hands.

It took three doctors, a gamut of tests and 11 months to get the answer: He had a disease he didn't know anything about and a prognosis of two to five years left to live.

"I got drunk," he said. "I couldn't have what they said. I thought, 'I'm just getting to where I want to be in life. I'm still a young man.' "

Divorced and the father of a son, he had been dating Glenda House for nearly a year. He was about to begin work on his master's degree. And at Kennedy Space Center, he was on track for a big promotion.

In January 2007, Patterson quit work to spend what time he had left with his family, and that spring he drove with Glenda to Washington for an ALS candlelight vigil at the Capitol.

"I didn't see one news reporter, not one cameraman," he said. "Nobody cared about ALS. Somebody had to do something. I wasn't just going to crawl in a hole and die."

He began planning his mission. And in July, he and Glenda, 36, married.


All services susceptible

On the way to Washington, the two plan to stop at Fort Stewart in Georgia and Fort Jackson in South Carolina. They want to tell soldiers there what scientists have learned: that it doesn't matter whether you've been in the Army or Navy, Air Force or Marines. It doesn't matter whether you've ever deployed overseas or fought in combat. Patterson never made it out of Fort Benning, Ga.

Any time in the service raises the risk, though there might be no sign of ALS for years or decades afterward. And for those who fought in the Persian Gulf War of the early 1990s, the risk is higher still. Again, the reason is unknown.

Since the disease was identified in 1869 -- decades before it struck baseball great Lou Gehrig -- the prognosis of two to five years has remained unchanged. And only one drug -- Rilutek -- has been approved by the FDA for treatment. It is thought to extend life by about eight to 12 weeks and costs about $1,000 a month.

"The disease is still a rare one," said Bruijn, a molecular biologist. "It's not as if everyone in the military is suddenly going to get ALS. But the fact that it is increased leads us to the theory that there is some sort of environmental exposure involved, and we need to identify what that might be."

Earlier this year, scientists isolated a gene that causes some forms of ALS, indicating a genetic predisposition.

The most likely scenario, experts say, is that the disease comes from that genetic vulnerability coupled with exposure to an environmental toxin.

Realistically, Ken Patterson probably won't live long enough to find out. But he likes to think otherwise.

"I'm going to stick around another 90 years just to **** the world off," he said.


Kate Santich can be reached at ksantich@orlandosentinel.com or 407-420-5503.


http://www.orlandosentinel.com/orl-a...,7296903.story