|
|
|
|
 |
Q: Will improving my nutrition help me stay healthier or affect the progression of ALS? Dr. Kasarskis: Nutrition is important for people with ALS. I often get questions from people wondering if they should be taking nutritional supplements, herbal remedies, or vitamins. Only been a few studies have looked at these questions and none of them were definitive. There is still probably a great deal we don’t know about nutrition and dietary supplements for ALS. But there are several things we absolutely do know. It is very important for people with ALS to avoid excessive weight loss. Just having ALS puts you at risk nutritionally because it is harder to maintain adequate food and fluid intake. Depending on the direction your disease has taken, you may have trouble chewing, swallowing, or just getting the food on a fork and into your mouth. These issues lead to fatigue and frustration, and certainly reduce the pleasure of eating. Meals take longer and prolonged meal times are associated with an increased likelihood of inadequate food intake. It’s important to focus on maintaining your weight by maximizing your caloric intake. Be sure to eat foods you like and enjoy them in sufficient quantities. If you see your weight decrease, talk with your physician about the best approach to good nutrition. Ask for a referral to a nutritionist to help evaluate how you can maintain your weight and get the intake you need. This may include diet modification, swallowing strategies, mobile arm supports for self-feeding, and alternative routes of nutritional intake via a PEG (feeding gastrostomy tube). Even people without ALS will lose muscle mass, muscle power, and will experience fatigue if they don’t take in the necessary calories. Coupled with ALS, a calorie deficit can have an enormously negative impact on your health. Consider getting the calories you need as good preventive medicine. 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.Special Challenges for Children Who Act as CaregiversAn article in the New York Times 2/22/09 issue, by Pam Belluck, talks about how children providing care for parents and grandparents are experiencing increased confidence, but also often have school problems, stress and rebelliousness. Some schools are developing classes and groups for these kids. See http://tinyurl.com/dhk6dt. A Popular Book Now Newly Revised and Updated
The book can be ordered for $39.95 from demosmedical: http://tinyurl.com/coc22a Dealing with End-of-Life Questions and IssuesNo matter your age or situation, it’s never easy. Talking about the end of life is extraordinarily difficult, whether you’re the one facing death, or you are a spouse, partner, child or friend of someone who is. We tend to put off the conversations around these issues as long as possible, but experts say it’s actually often easier to begin the discussions way ahead of time, when the end seems farther off. We delay discussing the topic because we’re afraid of either becoming depressed or of depressing others. We may be unsure about how to answer hard questions. Some fear that discussing death will remove the last vestiges of hope. Sometimes physicians avoid treading on the topic, and family members can feel they’re protecting their loved one by encouraging caregivers, health providers, friends and family to focus on “cheerful things.” But studies suggest that the discussion of death doesn’t trigger depression, although it may stimulate grief, which is a normal and healthy process. Avoiding the discussion tends to breed isolation and loneliness. The key is to base each and every conversation on what you know about the individual person and his or her needs. Some want to know details about the dying process and need to carefully prepare. Some are interested in writing or recording thoughts or advice for the future. Others want to focus on ensuring economic security and stability for their family and friends. Some may prefer avoidance or denial. It varies with the individual, timing and mood. One of the most difficult discussions to have revolves around the options and preferences for care closer to death. Some call this “Advanced Care Planning,” but it involves reviewing medical and palliative care options. It also includes dealing with advance directives and other legal documents, like the durable power of attorney for health care. It’s important for caregivers and family to know how aggressive the individual wants to be and how he or she would like particular situations that could arise handled. Ideally, a physician or palliative care nurse initiates the first discussions about advanced care planning. It’s important to discuss the individual’s goals, values and beliefs and what situations, if any, he or she would find intolerable. The conversations should be reviewed and updated over time. There is a great deal of resource information available that can provide perspective and useful information. But experts agree there is no substitute for thoughtful conversation and dialogue, and an openness to confront the fears and hopes that arise as each of us faces our own passing and the death of those we love. Resources
Jane H. Gilbert Appointed President and
|
 |
|
Gilbert joins The Association after serving as the senior vice president for chapter operations for the American Red Cross in Washington, D.C. In that post, which she occupied from 2005-2008, Gilbert was responsible for eight service areas and 760 chapters, leading a professional team of more than 350 full-time employees, managing a budget of $900 million and directing the administration of more than $30 million in chapter grants.
“We are very fortunate to have found a professional of the highest caliber in Jane Gilbert,” said Allen L. Finkelstein, chairperson of The Association’s National Board of Trustees. “She has an extraordinary record as a proven and widely respected leader and her accomplishments in fundraising, operations and strategic planning are strengths that will be critical in our drive to conquer Lou Gehrig’s Disease.”
As president and CEO of The Association, Gilbert has responsibility for the strategic direction and operations of the organization which directs the largest privately-funded research program into ALS and a national network of 42 chapters that deliver an array of services to people living with ALS. At the national level, Gilbert will oversee The Association’s activities in research, advocacy, finance, development, community services, patient services, communications and operations.
ALS (amyotrophic lateral sclerosis), which took the life of baseball legend Lou Gehrig, is a progressive, neurodegenerative disease that afflicts 30,000 people in America.
“The ALS Association is a recognized leader in the fight against ALS, and as the new president and CEO, I will make sure that we earn that distinction everyday,” Gilbert said. “My most important priorities are to intensify our aggressive focus on finding new treatments and a cure for ALS while we rededicate ourselves each day to providing the best and most compassionate care for people with ALS across our nation.”
“I will lead this effort with a sense of urgency because people with ALS cannot wait; their survival rate is only two to five years from the time of diagnosis,” continued Gilbert. “I view the fight against ALS as an emergency that requires an all-encompassing response that will not cease until a cure is found.”
Prior to her American Red Cross position in Washington, D.C., Gilbert was the service area executive of the Mid-Atlantic Service Area for the American Red Cross. Before the American Red Cross, Gilbert was the director of development for the Boys & Girls Clubs of Omaha.
Gilbert holds a master’s degree in business from the University of Nebraska and a bachelor’s degree in communications and speech from Southern Methodist University in Texas.
The ALS Association is the only non-profit organization fighting Lou Gehrig’s Disease on every front. By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.
A former editor, golf course superintendent, soldier and local caterer, and the list goes on. People who chose quite different career paths, to be sure, yet all with something in common: Each is fighting ALS, has not given up on life and is helping others.
They are among the many brave people with ALS and their caregivers that The ALS Association is recognizing for the second consecutive year through its “ALS Across America” campaign, which is part of ALS Awareness Month in May.
 |
|
“Each of the 30,000 people in this country fighting ALS is a hero and has an inspirational story to tell,” said Jane H. Gilbert, president and CEO of The Association. “We are honoring those battling Lou Gehrig’s Disease who courageously embody the spirit of living life to the fullest and are making a difference in their community.“
The campaign also is reinvigorating those on the frontlines of helping patients and their loved ones.
“The national campaign ‘ALS Across America’ shares stories of courage and strength and unites ALS communities,” said Marilyn Simon-Gersuk, vice president of community services for The Association. “These people inspire and encourage us to be relentless in our search for a cure and in our commitment to help patients and families.”
Prior to his diagnosis in 1997, Michael Jack, 42, rode his bicycle to work every day and participated in various physical activities including rollerblading. A resident of Alexandria, Va., Jack was the editor at the American Institute of Architects and an account executive for the public relations firm Porter Novelli. His new passion is helping The Association’s DC/MD/VA Chapter help others.
“Michael has always been someone looking to help others,” said Dan Iglhaut, 44, his caregiver. “As a volunteer ‘buddy’ and team leader with the Whitman Walker Clinic, an AIDS service organization, Michael continued to work with his client well after his ALS diagnosis and was honored as volunteer of the year. Michael has embraced The ALS Association not just for his needs but as an outlet to support his fellow patients with information, friendship and laughter.”
Steve Franks, 50, may have lost the ability to perform many of his tasks at his former job at Mainlands Golf Course in Pinellas Park, Fla., however, that has not stopped him from spearheading plans to transport 150 mannequins across the state in the “Piece by Piece Awareness Campaign.” Each mannequin represents a person who ALS has affected and whose body has literally been stolen “piece by piece.”
 |
|
A former soldier and Army Security Agency communications worker, Bill Hamley, 65, gives inspiring speeches to such groups as the Physical Therapists Club at Quinnipiac College. The club members formed a Walk to Defeat ALS™ team.
“Bill is important to the chapter because of who he is and how he relates to others,” said Andy Byrne, patient services assistant for The Association’s Connecticut Chapter. “At every opportunity he helps to spread awareness both of the disease and of The ALS Association. Bill is a gentle man with a great deal of quiet strength. He has a deep spirituality that is reflected in everything he does.”
A local caterer turned ALS-educator and advocate, Jenny Hoff, 50, has made a strong impact on the community by tirelessly working on the telephone and her computer to assist others living with ALS and is a mentor to young people who she encourages to excel in their homework.
“Jenny is a tremendous advocate for The ALS Association who has contributed so much of her time locally and throughout the region to help educate and raise ALS awareness,” said Jennifer Hanson, development associate for The Association’s Evergreen Chapter. “She has embraced her ALS diagnosis with an incredible positive attitude and has become a tremendous advocate in our region to help teach others about this disease.”
Throughout ALS Awareness Month, The Association and its more than 100 affiliates will 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. National ALS Awareness Month activities include proclamations issued by cities and states.
The Association’s National ALS Advocacy Day and Public Policy Conference, which has grown to be the single largest gathering of the ALS community, and is part of ALS Awareness Month, will be held this year on May 10-12 in Washington, D.C.
People with ALS and families from across the country travel to the Nation’s Capitol to tell their stories in meetings with nearly every member of Congress, advance The Association’s public policy priorities, educate Congress about the true nature of this disease, and let them know why more must be done in the fight for a treatment and cure.
In the past year, advocates for The Association have helped accomplish the following:
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.
|
