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October 29, 2009 In This Special Issue of The Exchange . . . The ALS Association Cares For Those Who Care the Most in New Campaign  National Family Caregiver Month Educational Webinar Series  Patient Voices in New York Times  The ALS Association Cares for Those Who Care the Most in New Campaign By Gary Wosk, Staff Writer  The ALS Association is encouraging caregivers to voice their concerns about their own health as well as the people who require their help around the clock during National Family Caregivers Month in November. Deirdre and Duane Parker The theme of National Family Caregivers Month is “SpeakUp” and when caregivers speak up The ALS Association is there to listen and help make their lives as easy as possible. “Most caregivers do not have the time to ask for help because they are too busy meeting the needs of others,” said Sharon Matland, vice president of patient services for The Association. “It is our responsibility as an organization to be extra diligent in reaching out to them.” As part of National Family Caregivers Month, The Association is launching “Show You Care,” a national campaign to recognize some of the thousands of local primary caregivers critical to protecting and enhancing the quality of life for individuals living with ALS. The daily challenges faced by caregivers, whose own health is adversely affected by providing care on a round the clock basis, are detailed in a series of profiles featured on The Association’s Web site.   (L-R) Granddaughter, McKinzie, Jennifer Anson (Evergreen Chapter staff member), Jeff Rode, Peggy Rode, granddaughter, Hailey, Leslie Lowe (in blue, KXLY-TV, Channel 4 staff member) and grandson, Sam. Deirdre Parker and her husband Duane Parker, who has ALS, take advantage of the services and programs offered by The Association’s St. Louis Regional Chapter in St. Louis, Mo.  Deidre Parker has found that the socializing she enjoys twice a week at a karate class and quilting at home helps reduces stress. Even running errands has proven to be an effective stress reducer. These activities have resulted in her having a more positive mindset, which is essential when she provides care to her husband.  “You need to be patient and understand what he needs,” Deidre Parker said. “Sometimes it’s hard for Duane to move his eyes, which is the only way he communicates.” Peggy Rode takes care of her husband Jeff Rode, who has ALS. She is active in support group meetings sponsored by The Association’s Evergreen Chapter in Kent, Wash., and has learned how to better cope with each new day as the disease progresses. “My biggest challenge is dealing with all the changes that my spouse is going through and how these changes affect the both of us,” said Peggy Rode, an avid gardener who considers her yard to be her “little oasis.” “We are dealing with new challenges everyday.” Phil Thomas, a do-it-yourselfer, made extensive modifications to his home to make life easier for his wife Kay Thomas, who has ALS. They receive help from The Association’s Greater Bay Area Chapter in San Francisco, Calif. The Thomases, both retired military veterans, are trying to enjoy life the best they can. (L) Kirsten Traylor with her mother, Kathryn Thomas, and stepfather, Phil Thomas, along with Kathryn Thomas granddaughter, (L) Kira Traylor, and niece, Kia Zimmer. “Just because your loved one has ALS, do not fall victim to it,” said Phil Thomas, who served in the medical corps in Operation Desert Storm and Operation Desert Shield. “Don’t dwell on what you can’t change or the inevitable. Each day is a gift, a chance to be together, to share with friends and family.”  The public also can make a “Show You Care” donation to support The Association and the fight against ALS by clicking here.  “One of the most important attributes of being an advocate for your loved one is the willingness and the ability do speak up and keep your eye on the ultimate goal, protecting not only the health and safety of your loved ones but for yourself as well,” states the Web site for the National Family Caregivers Association, which organizes National Family Caregivers Month each year. Providing constant care takes its emotional and physical toll on caregivers. Signs of burnout include anger, anxiety, depression, feeling overwhelmed and guilty, sleeplessness, premature aging and other symptoms. Studies show that 75 percent of all caregivers are going it alone without help from family and friends. “If Americans need heroes they need not look any further than the caregivers in their own families,” Matland said. “These are among the most courageous people you will ever meet. They continually give of themselves to provide whatever is needed.” George and Amelia Shelton Caregivers also increasingly include the husbands, wives and, in some cases, the children of military veterans with ALS. That is because military veterans are approximately twice as likely to develop ALS as the general public. “It is cruelly ironic that these caregivers, who shouldered a tremendous family burden while their loved ones served in the military, now find that burden has increased. They are now on the front lines in the war against ALS; however, they are not alone,” said Steve Gibson, vice president of government relations and public affairs for The Association. The Association is the leading voice for veterans and their caregivers, having successfully advocated for new regulations at the Department of Veterans Affairs that make ALS a service connected disease. These historic regulations, which were implemented in 2008, provide caregivers with the resources they need to fight back against ALS, including monthly disability compensation, health benefits and assistance to help pay for home health care services that are so vital to veterans with ALS and their caregivers. As Veterans Day approaches on November 11, all Americans are urged to join The Association in showing their support for the nation’s veterans and their caregivers by sending a letter-to-the-editor of their local newspaper using The Association’s Web site at www.alsa.org/policy/veterans.cfm. The Association’s national network of chapters also is committed to giving caregivers back as much of their lives before ALS as possible including having more time to take care of personal matters, catching up with family and friends and having a chance for rest and relaxation. Evelyn and Don Rose One of the ways The Association looks out for the welfare of primary caregivers is by training and providing ongoing support to the friends and families of caregivers on how to use its Care Connection program. This program is based on a network of volunteers from the community that provide help for the person with ALS and often gives the caregiver a much needed break from their day-to-day responsibilities. It provides an opportunity for those who want to offer a helping hand but do not know what is needed. The program provides a plan for organizing help, training and information about how to establish an effective team. The Care Connection uses the Lotsa Helping Hands Web site, which offers a simple, immediate way for families facing the challenges of long-term care to organize and communicate with other family members, friends and neighbors. It is an easy-to-use, private group calendar, specifically designed for coordinating visits or help with meal delivery, transportation and other tasks necessary for life to run smoothly. George Shelton and his wife Amelia, who has ALS, are enthusiastic about their participation in The Association’s Care Connection. They are helped by The Association’s Jim “Catfish” Hunter Chapter in Raleigh, N.C. “As a caregiver, the biggest challenge that I face is realizing that I can’t do everything by myself,” said George Shelton, who likes computer games and watching movies. “My best advice to other caregivers: swallow your pride and let family and friends assist you whenever possible. No one person can do all of this alone.” In honor of National Family Caregivers Month, the Patient Services Department of The Association has assembled a set of Web-based presentations designed specifically for caregivers who provide attention and care to people living with ALS. During the informative and practical presentations, experts from their respective fields share experiences and offer tips and support.  “There will be a time in this life when each and every one of us will be called on to assume the role of caregiver,” Matland said. “The ALS Association is committed to protecting those who embrace this responsibility from the clutches of ALS. Together we can work to stop this devastating disease from claiming more victims and strive to restore a sense of grace and dignity to those who give so much to meet the needs of their loved ones.” TOP  National Family Caregiver Month Educational Webinar Series In honor of National Family Caregivers’ Month in November 2009, The ALS Association – National Office, Patient Services Department has assembled a set of web-based presentations designed specifically for caregivers providing attention and care to people living with ALS.  Experts in their respective fields are in the line-up.  Please join us for informative and practical discussions and to share experiences, tips and support. Presentations are listed below. Visit http://www.alsa.org/patient/nfcm/webinars.cfm for easy on-screen instructions on how to join any of these webinars.  Compassion Fatigue: Reduced Capacity to Care.  This presentation will examine strategies to cope with the sometimes stressful impact of being a caregiver. If Fiber Doesn't Work, What Does? …Nutritional Troubleshooting Tips for Caregivers  Turning Points in ALS As ALS progresses, a number of difficult decisions often become necessary, this presentation will examine the medical options and the issues they raise. Financial Planning  Care Connection network of friends, neighbors, and others that provides practical help for the person and family living with ALS.  Learn how to build one. Anniversary Reactions  After the life of a person living with ALS has comes to an end, family and friends often experience additional feelings of loss as they pass through the holiday season and personally important events.  This presentation will overview ways to cope and celebrate loved ones. TOP  ALS Across America’ Campaign Inspires New York Times Profile of People with ALS A Southern California musician, a biology professor in Pennsylvania, a former paratrooper from Boston and a Maryland woman who has the inherited form of ALS are among the six people profiled in The New York Times online health section, Patient Voices, at http://www.nytimes.com/interactive/2009/10/19/health/healthguide/TE_ALS.html The series features audio of the people in their words describing their life with Lou Gehrig’s Disease, along with audio of a Louisiana woman caring for her daughter with ALS and an Ohio woman who took care of her husband until he passed away from ALS. These profiles are complemented by photographs with information that describes the disease and provides more details about each individual.  Three of the six individuals profiled in Patient Voices were previously chronicled by The ALS Association during its national “ALS Across America” campaign last May for ALS Awareness Month.    Dr. Lucie Bruijn, chief scientist of The Association, and Sharon Matland, vice president of patient services for The Association, will participate in a question-and-answer blog tentatively scheduled for Tuesday, November 3 for this installment of Patient Voices. The newspaper is currently hosting an online discussion about these profiles at http://well.blogs.nytimes.com/2009/10/20/the-voices-of-als where readers can add their comments. The Association worked closely with the newspaper to arrange the interviews which were done in person by New York Times photographers who conducted the interviews and captured the images across the nation in August and September. Each actual online audio is approximately one to two minutes in length.   “A diagnosis of a chronic disease, mental illness or condition can change one’s life in many ways. In Patient Voices, we feature first person accounts of the changes, challenges and rewards patients face as they cope with various health issues,” according to the New York Times. Patient Voices has focused on many diseases in the past including cancer, multiple sclerosis, AIDS and HIV, Crohn’s disease, lupus, cystic fibrosis and Type 2 diabetes. The New York Times reports its Web site is visited by 20 million people each day. The print version of the newspaper also promoted the section. 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. Questions or comments? E-mail webmaster@alsa.org or call 800-782-4747.