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Q: What should we know about stress and ALS? Do you think stress increases your chances of getting the disease? Dr. Kasarskis: I’m not aware of any study that suggests that a stressful life or prolonged periods of stress are associated with getting ALS. But we do know that once you have ALS, it is very common to experience a wide variety of stressors, as will your spouse, partner or caregiver. The sources of stress are so obvious and prevalent among people with ALS that physicians typically don’t wonder why people are experiencing anxiety and don’t typically recommend psychiatric therapy to help people cope. There are, however, some very practical things that can be done to enhance your ability to deal with the stress and strain. First, think about coping skills you’ve used in the past. Perhaps you love to experience nature, listen to music, watch old movies, play board games, chat on the internet, read mystery novels or follow sports. Whatever you like to do, try to find ways to incorporate those pleasures into your life now. If your mobility is compromised, there are a wide range of assistive devices available specifically to facilitate activities like these. Next, consider who in your network of friends, neighbors and family might be able and even eager to help. Honestly, if you’re trying to deal with this disease by yourself it’s not going to work very well. Understand that involving others in the errands, routines and hassles of daily life will not only help you, but will provide a tangible sense of camaraderie -- and should lesson the stress of your primary caregiver, too. Your physician will also be able to provide you with anti-anxiety and sleeping medications. Feel comfortable asking for this. It’s important to get a good night’s sleep and fatigue has a negative effect on everyone’s ability to copy with the next day. Reducing your anxiety level will go a long way to helping you deal with the stress you’re experiencing. A number of studies suggest that good psychological health may extend your lifespan with ALS, and we know for certain that it improves quality of life. Don’t assume you have to live with stress and anxiety; finding realistic and effective ways to reduce your tension will make every day a little bit better. Each issue we feature a leading neurologist specializing in ALS responding to a question. If you would like to submit questions for a future Q & A, please send your questions to Amber Walters at awalters@alsa-national.org. Please understand that we won’t be able to address all questions and we won’t be able to respond to individuals personally.Tapping Your Creativity for
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The trick is to find a way to adapt your physical situation to the art form, using resources and technical assistance that can help you re-connect with what you like to do. There are a wide range of organizations committed to bridging the gap between your physical challenges and the demands of the art and activities. There is also a wide network of people eager to share their own experiences and offer tips about what works and how to reconnect with what you love to do.
Experts say transitioning to using an adaptive approach to your creative efforts may take some time and trial-and-error, and you may find it takes a certain level of commitment to adjust. But they say it’s typically worth it just to re-connect with a vital form of self-expression and a very effective means of reducing stress. There are many people with a broad array of physical challenges that have found how to reclaim their beloved art form, and most are happy to share their tips and tools.
Resources
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Don’t miss this call on “Computer Access for People with ALS,” led by Alisa Brownlee, Assistive Technology Specialist:
Wednesday, May 20 at 4 pm PDT
Go to: https://alsa.webex.com/alsa/j.php?J=825831354
Meeting number: 820 831 354
Meeting password: ATSem2009
Please sign on to the computer first before calling in.
Audio Portion (for those only joining the teleconference)
866-699-3239
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Jeff Faull, Ken Patterson, Jim Thew and Sharon Harrison were joined by people with ALS, families and caregivers of people fighting the disease, including mothers and fathers and military veterans from across the country.
Studies, including those conducted by the Department of Defense, Department of Veterans Affairs and Harvard University, continue to demonstrate that military veterans are approximately twice as likely as the general population to develop ALS, commonly known as Lou Gehrig’s Disease.
The ceremony was part of The Association’s 2009 National ALS Advocacy and Public Policy Conference, which took place May 10-12 in Washington, D.C.
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Moreover, survivors of veterans lost to ALS also are eligible for compensation, regardless of when the veteran lost his or her fight against ALS. The Association was the leading organization advocating for this policy change.
People with ALS, their families and caregivers, physicians and researchers met in Washington, D.C., on the steps of the Carnegie Museum for a candlelight vigil on Sunday, May 10 during The ALS Association’s 2009 National ALS Advocacy Day and Public Policy Conference. The conference is the single largest annual gathering of the entire ALS community.
Each year the candlelight vigil in the Nation’s Capitol brings together people from
throughout the ALS community to show their solidarity in the fight against ALS, to pay tribute to those who have lost their lives to the disease and to honor those still fighting ALS.
The ALS Association has inducted former Major League Baseball pitcher Curt Schilling and his wife Shonda into the organization’s Hall of Fame as its first inductees for their long time support of The Association in the fight against Lou Gehrig’s Disease.
The award ceremony was held on Tuesday, May 12 during The Association’s 2009 National Advocacy Day and Public Policy Conference in Washington, D.C., where they were also presented with the Hall of Fame Award.
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“Curt and Shonda Schilling have devoted virtually nonstop effort in support of The ALS Association’s vital programs and services that have enriched the quality of life for people living with ALS,” said Jane H. Gilbert, president and CEO of The Association.
The Schillings, who have raised more than $10 million for The Association through their “Curt’s Pitch for ALS, “Covering all the Bases” “Say It with Flowers,” and numerous other fundraisers, remain steadfast in their dedication to curing ALS. The Schillings also have played a vital role in The Association’s advocacy efforts, including participating in Advocacy Day on Capitol Hill and testifying before Congress. The Schilling’s outreach to Congress and the Administration on behalf of people with ALS helped build support for the ALS Registry Act, legislation signed into law in 2008 that will establish the first national ALS patient registry at the Centers for Disease Control and Prevention. The registry is expected to collect vital information about the disease that will significantly advance the fight to find a treatment and cure.
“Shonda and I are both humbled and embarrassed to be accepting this award,” said Curt Schilling. “Humbled because we are profoundly proud that people feel we have made a difference in other people’s lives. Embarrassed because we have spent 20 years watching true heroes in this fight, battle every day with the disease known as ALS. The spirit, faith and love we have witnessed daily, from both patients and their families has been inspirational both personally and professionally.”
“So for those very people we stand here and offer our sincere thank you, but also want to insure that you all know we are accepting this on their behalf, for it’s on their shoulders we stand and it’s on their work we fight, we progress, and it’s on their commitment to the defeat of this deadly disease that we will one day stand here and make the statement ‘ALS has been beaten,’" Curt Schilling continued.
In 2001, Shonda Schilling received The Association’s prestigious Lawrence A. Rand Prize for her exemplary commitment to the fight against ALS. The entire Schilling family, including a son named Gehrig, appeared in The Association’s TV PSA entitled “Lighting the Way for a Cure.” While pitching in the 2004 World Series, Schilling wrote “K ALS” on his right shoe for the entire world TV audience to see. “K” stands for strike out.
“In 2004 it was reported that close to a billion people world wide watched as the Red Sox overcame insurmountable odds to defeat the NY Yankees, down three games to zero,” Curt Schilling said. “In game six they watched as my ankle bled, but more importantly they saw the term ‘K ALS’ written on my shoe. In some small way it was designed to say thank you to each and every family member, each and every ALS patient, each and every researcher, caregiver and doctor associated with finding a cure.”
Both Schillings became involved in the fight against ALS in 1992 after Curt Schilling, then a new member of the Philadelphia Phillies, met Dick Bergeron, who had ALS. “Put me to work. I want to get involved,” he said. The Schillings host parties each year for the many people with ALS they have befriended and for donors.
“The ALS Association owes Curt and Shonda Schilling a great debt of gratitude for their tremendous contribution to our vision and mission,” said Allen L. Finkelstein, the chairperson of The Association’s National Board of Trustees. “They are heroes in every sense of the word to the entire ALS community.”
The Association’s National ALS Advocacy Day and Public Policy Conference in Washington, D.C., is part of ALS Awareness Month in May, and is the single largest gathering of the entire ALS community. People with ALS, families, caregivers, physicians and researchers from across the country gather to urge members of Congress to join in the fight against the disease.
Throughout the month, The Association and its nationwide network of 42 chapters reach out to communities across the country to educate the public about Lou Gehrig’s Disease and urge people to join The Association in the fight to make ALS a disease of the past.
The ALS Association’s has launched the “Covering All the Bases® Hitting Challenge” during Major League Baseball’s “4ALS Awareness” charitable initiative that commemorates the 70th anniversary of Lou Gehrig’s famous “Luckiest Man” farewell speech as he battled the disease that ultimately took his life.
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To participate online, visit the “Covering All the Bases” campaign Web site at www.alsa.org/coveringallthebases.
Major League Baseball’s “4ALS” initiative, launched earlier this year, will culminate in an array of activities at Major League and Minor League ballparks across America on July 4. The initiative is designed to educate the public about ALS and raises financial support for research into the causes and cure for ALS.
The July 4 event will feature many activities, including all players and on-field personnel wearing the “4ALS” logo on their uniforms, and a reading of Gehrig’s “Luckiest Man” speech.
“The ALS Association commends Major League Baseball for initiating one of the most important ALS awareness campaigns ever undertaken,” said Jane H. Gilbert, president and CEO of The Association. “We are keeping our fingers crossed that official scorekeepers will be extra busy on July 4 penciling in hits.”
To mark the 70th anniversary of Lou Gehrig’s farewell address, Major League Baseball and Minor League Baseball are helping to support four ALS organizations, including The ALS Association, ALS TDI, MDA/Augie’s Quest and Project A.L.S. to raise awareness of ALS.
The ALS Association has certified the ALS clinic at Stony Brook University Hospital in East Setauket, N.Y., as its 34th Center of ExcellenceSM in the nation.
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“The team approach at the Stony Brook ALS Center provides the highest quality of care for people living with ALS and their families,” said Sharon Matland, vice president of patient services for The Association. “We are extremely proud to welcome the center into our prestigious family of Centers of Excellence.”
People with ALS who attend the center once every three months are seen within the span of 3-l/2 hours by each professional member of a multidisciplinary team led by the center’s medical director, Dr. Rahman Pourmand. The team includes a representative of the Patient Services Department of The Association’s Greater New York Chapter. Other team members specialize in occupational therapy, physical therapy, nursing, speech, social work and nutrition.
The chapter also provides the center with funding and is committed to bringing quality care to patients on Long Island.
“We are very pleased by this news and very grateful to Dr. Pourmand and the Stony Brook ALS clinical team for their commitment to achieving this recognition,” said Dorine Gordon, president and CEO of the chapter. “The Stony Brook ALS Center is one of 34 ALS Association Certified Centers of Excellence in the country and the only one of its kind on Long Island.”
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“We are very excited about becoming an ALS Association Certified Center of Excellence,” Pourmand said. “Getting certification for the Stony Brook ALS Center required intensive evaluation that has very specific criteria. Our entire multidisciplinary team of ALS specialists has met those requirements. I thank the entire team for their devotion to help us obtain this goal. The stamp of approval by The ALS Association means that our patients get the highest quality clinical care.”
Pourmand’s team will literally go the extra mile in making sure that each patient is receiving first-class care.
“I am very proud that our clinic at Stony Brook has been granted Certified Center of Excellence status by the ALS Association,” said Adele Marano, director of patient services for the chapter. “It is a testament to our clinical team’s dedication. The staff’s commitment extends beyond the four walls of the clinic. They go into patient homes to provide care, follow-up visits and counseling. This is a well-deserved honor recognizing the hard work they put into the comprehensive care for people with ALS.”
There are many pluses to receiving care at the center including a significant reduction in stress since most patients’ needs are met on the same day at one location.
Another very important benefit is that in this collaborative environment “The team offers each person living with ALS an individualized plan that is best suited to his or her needs and that results in an enhanced quality of life,” Matland said.
Patients play an active role at the center in determining their treatment plan, and quickly bond with medical professionals.
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The concept for this center was first proposed in 2001 to the chapter by Chris Pendergast, who has lived with ALS since 1994. His Ride for Life group has raised money for the center by sponsoring such fundraisers as The Long Island Educators and Health Care Professionals Cup, an annual golf outing. In 2008, the chapter presented the center with a check for a grant made possible by the group.
“The care is a marked improvement over the judicial care usually given patients at non-center facilities, said Pendergast in a hospital publication. “Here we get all of our medical and support needs addressed by one focused team. The clinic has evolved our ALS care into the 21st century.”
Other Centers of Excellence in the state of New York include the ALS Center at SUNY Upstate Medical University in Syracuse and the Beth Israel ALS Center in New York City.
The mission of The Association’s Center Program is to define, establish and support a national standard of care in the management of ALS. The objective of the program is to encourage and provide that state-of-the-art care.
Six communications projects produced by The ALS Association that asks the public to support research, helps people live with the ALS and encourages participation in its national signature fundraiser received MarCom Awards, an international competition that recognizes the most creative and effective marketing and communications materials.
Judges from the Association of Marketing and Communication Professionals, which also administered the competition, reviewed such categories as concept, writing and design of programs as well as print, visual and audio. The entries were submitted by corporate and communications departments, advertising agencies, PR firms, design shops production companies and freelancers.
The Association won Platinum Awards, the highest honor possible, for actress Angela Lansbury’s “Cure ALS Campaign,” and its centerpiece, a 30 second TV public service announcement which has reached an audience of nearly 100 million people since its release in April 2008. Lansbury’s message is that with the public’s support of ALS research the progression of the disease can be delayed or stopped, and that a cure can be discovered. Her sister, Isolde Denham, fought ALS in the 1980s.
The patient service department’s brochure “Guide to Living a Fuller Life with ALS” also received Platinum.
The advertising campaign for the Walk to Defeat ALS™, The Association’s national signature fundraiser, and the ALS Awareness Month Web site design brought home Gold. In addition, the patient service department’s “Care Connection” video received the Bronze Honorable Mention Award.
The ALS Association's mission is to lead the fight to cure and treat ALS through global, cutting-edge research, and to empower people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support. Click here to contact your local chapter, certified center or clinic.
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