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Q: What should I know about getting exercise? Will it help or will it hurt? Dr. Kasarskis: While we need to do more research on this question, the best approach for now is common sense, something between being a couch potato and pumping iron. The goal should be to use and maintain the muscle power you have. I don’t recommend using free weights, which puts you in danger in case your muscle gives out. And binge exercise (also known as being a “weekend warrior”) is bad for everyone, especially for people with ALS. I suggest you aim for moderate exercise if it can be done safely. I have one patient who has had ALS for 15 years, and she rides a stationary recumbent bike 100 miles a month and loves it. She sees the exercise as an important part of how she manages her disease. She has tiny muscles, but they’re strong! There are also some respiratory exercises you can do. Some people like to use a Power Lung (see http://www.powerlung.com/), a drug-free, easy-to-use, handheld breathing trainer. You can set inspiratory and expiratory resistance differently, based on suggestions from your respiratory therapist or physician. We think it helps maintain respiratory muscle ability but we need research to understand the impact of these exercises. By and large, as long as it’s safe, exercise is relatively risk free and offers a psychological benefit. Making Tough DecisionsWhether you’re grappling with a difficult health situation or a challenging problem with your work or personal life, having a clear idea about how to get the information you need to make the best decision possible is important. When the stakes are high, it’s typically not enough to go with your gut. Hunches should be compared against facts and informed opinions before you actually make the decision, experts say. Here are some tips:
Sometimes the effectiveness of decisions isn’t known for quite a long time; other times you realize it right away. But whatever the case, knowing that you’ve done your “homework” and sought the best feedback and information at your disposal is reassuring in and of itself. Resources
ALS Association Achieves Historic Victories in Washington, D.C.The ALS Association and advocates across the country in the last month have achieved three huge victories in the fight against ALS. The enactment of the ALS Registry Act will establish the first ever nationwide ALS patient registry and may become the single largest ALS research program ever. The implementation of historic new regulations will provide military veterans with ALS, their families and survivors access to full health and disability benefits worth more than $500 million. In addition, The Association and advocates worked with Congress to appropriate $5 million for the ALS Research Program at the Department of Defense, a program that is specifically designed to find new treatments for ALS. These victories will benefit everyone whose life has been touched by ALS and clearly demonstrate advocacy efforts in Washington, D.C., are making a difference in the fight against Lou Gehrig’s Disease. Much more needs to be done to improve the lives of people living with ALS and their families, efforts that will lead to a treatment and cure for this disease. To help make a difference, join The Association’s advocacy efforts by signing up at http://capwiz.com/alsa/mlm/signup/. Additional information on these tremendous victories is available at the links below. ALS Registry Act Signed into LawAfter a nearly four-year fight, The Association succeeded in passing the ALS Registry Act, which was signed into law by President Bush on October 8. The legislation will establish the first-ever national ALS patient registry at the Centers for Disease Control and Prevention, providing researchers, scientists and clinicians with unprecedented new information that is needed to improve care for people with ALS, learn what causes the disease and develop a treatment. Thanks to The Association and its advocates, the bipartisan coalition that was built in support of the bill could not be stopped. In fact, the Senate passed the bill without objection and the House passed it by an overwhelming 415-2 vote. Additional information, including a press release announcing enactment of the ALS Registry Act as well as quotes from members of Congress, is available on The Association’s Web site at http://www.alsa.org/news/article.cfm?id=1365. The Association also encourages the entire ALS community to thank their members of Congress for voting for this critical legislation. Thank you letters that can be sent directly to Congress are available on the Advocacy Action Center of The Association’s Web site at http://capwiz.com/alsa/home/. New Regulations Provide Over $500 million
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The team Thompson, the owner of hotels, resorts and restaurants including the Hilton Virginia Beach Oceanfront, and the network created was “amazing” for several reasons. It was the largest Walk team in the eight-year history of the event – 7,000 people participated. And the team raised more than $600,000.
Top Fundraising Walk Teams:JT Walk Team Duane Reade & NYY Team Up for ALS For the Love of Jemma Hakuna Matata Fuller Friends Kids 4 Cure Largest Walk Teams:JT Walk Team Dobbers Up Fuller Friends Glenn's Gladiators |
“The national record-breaking Walk to Defeat ALS JT WALK team in Virginia Beach, Virginia, in honor of PALS (person with ALS) Josh Thompson, is both a loving tribute to Josh by his family and large network of friends and a testimony to what a difference one family can make in building community awareness about ALS and its devastating affect on people’s lives,” said Ken Nicholls, the executive director of The Association’s DC/MD/VA Chapter.
“The Thompsons, just like thousands of other families across the country, chose to participate in the Walk to Defeat ALS as a way to fight back and make a difference in finding a cure for ALS,” Nicholls continued. “One clear result is a community more aware of the impact of Lou Gehrig’s Disease on their lives and the lives of their neighbors.”
Prior to the “JT Walk” team, the largest team assembled was the 844-person Dobbers Up team that participated in the Walk in Des Moines sponsored by The Association’s Iowa Chapter. The previous record for the most money raised at a Walk belonged to the Duane Reade & NYY Team Up for ALS, which participated in the Walk sponsored by The Association’s Greater New York Chapter and raised $157,067.
The tremendous success of the Thompson family's partnership with DC/MD/VA Chapter will serve as a motivator for other families challenged by ALS.
"The 2008 JT Walk team, led by Bruce Thompson in honor of his son Josh, is a strong example of the impact families and companies can make when they unite through the Walk to Defeat ALS program,” said Ashton Chase, The Association’s director of national signature events.
This particular Walk will long be remembered for more than its size and outpouring of love for Josh, diagnosed with progressive, neurodegenerative disease in 2007. His brother, Chris Thompson, and his associates at the Virginia Gentlemen Foundation organized a spectacular post Walk Beach Party & Picnic. The bash featured a concert with national recording artists Big Head Todd and the Monsters and an oyster roast, bar-b-que and fun park for children.
Each year, Walk to Defeat ALS events are held in 150 communities nationwide and include over 120,000 participants and volunteers. Each of The ALS Association's 42 Chapters participates in the national signature event, collectively raising more than $80 million dollars since the program's inception in 2000.
Nick Scandone, who has ALS, and Maureen McKinnon-Tucker, who is paralyzed, clinched the Gold Medal in September in the high-speed SKUD 18 sailboat racing competition of the Paralympic Games in Beijing. The two participated in some 11 races in Qingdao, China.
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At the Paralympic Games, Scandone and McKinnon-Tucker competed in the high-speed SKUD 18, a two-person sailboat despite the fact that he has no movement in his legs, his arms are extremely weak and he needs a power wheelchair to move about.
Residents of Huntington Beach, Scandone and his wife, Mary Kate, have taken advantage of the services and programs offered by The Association’s Orange County Chapter. He has never allowed ALS to define who he is.
“I live with ALS but ALS is not my life. I focus on what I can do and not what I cannot do,” Scandone said. “I just try to create things that I have something to look forward to, which is why I think sailing has helped,” he said. “I try to accomplish something everyday.”
Scandone believes keeping busy with the sport he has loved since he was eight years old and competed in since 1974, and pursuing other interests, has contributed to his surviving longer than most people with ALS
Like any great athlete who strives for excellence, Scandone made sure the effort he gave in China was his best. He left for Qingdao, China with members of his family so he could practice on the Yellow Sea.
Scandone credits others for making it possible for him to survive this long and still race sailboats.
“I have progressed just like everyone else, just a bit slower,” he said. I cannot type, walk and it is becoming more difficult to talk. Without the help of my wife, family, friends and others like The ALS Association, I do not think I would still be here.”
The equally strong-willed McKinnon-Tucker, who lives in Marblehead, Mass., was permanently paralyzed after she slipped and fell in 1992 while watching her husband, Dan Tucker, race J/24 sailboats in Rockland, Maine. Before the accident, she was a casual racing sailor. She was the first woman to represent the United States at the Paralympic Games.
During National Family Caregivers Month in November and throughout the year, The ALS Association recognizes the most important resource in the lives of people living with ALS are their spouses, children and friends who love them the most.
Resources as precious as these also need to be treated with tender loving care or they too can become ill and at the very least exhausted.
“They are there day and night for their husbands and wives, moms and dads and best friends and we at The ALS Association need to be there for them,” said Gary A. Leo, the president and CEO of The Association.
One of the toughest jobs in the world is taking care of someone with a disease such as Lou Gehrig’s Disease, an around-the-clock responsibility that often exacts a steep emotional and physical toll on these dedicated men, women and children whose lives have suddenly been turned upside down.
“The ALS Association in November is honoring the caregivers (see profiles, to the right) who are so critical to protecting and enhancing the quality of life of individuals living with ALS,” said Sharon Matland, vice president of patient services for The Association.
Though Peter S. Arno in his presentation “Economic Value of Informal Caregiving” estimated that the value of free service family caregivers provide annually is more than $250 million, the price caregivers eventually pay by compromising their own health transcends dollars.
Despite the risk to their own health, pride prevents many caregivers from accepting help; however, those who take advantage of the services and programs offered by The Association discover that their lives can be made easier and in the process they can also make new friends.
“We constantly remind these courageous people that they do not have to be alone in this journey,” Matland continued. “We train and provide ongoing support so people feel comfortable in using one of our newest programs, Care Connection, which can significantly lift the burden.”
Top 10 Ways to Celebrate |
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"Care Connection gives you more time to be with each other,” said caregiver Ashley Shelton. “The program makes things much easier. You don’t not have to worry about the little things because even the smallest things people can do for you helps a lot.”
Many of The Association’s chapters offer other respite programs to provide family caregivers time away from the home and their responsibilities. Caregivers can use the time, from a few hours to a full day or more, to take care of personal matters, catch up with family and friends and have a chance for rest and relaxation.
According to the National Family Caregivers Association, which organizes Caregivers Month, for the past 12 years, NFC Month has been nationally recognized by the president of the United States as a time to thank, support, educate and empower family caregivers. More than 50 million Americans care for loved ones with a chronic illness or disability or the frailities of old age, reports NFCA.
During this special year, NFCA is hosting a free family caregiver teleclass to teach family caregivers how to improve their communications with healthcare professionals. The Communicating Effectively with Healthcare Professional program will be a two-part class conducted by phone and the internet, and is designed to empower family caregivers to be better healthcare advocates for themselves and their loved ones.
Classes will be held on the first two Thursdays in November November 6 and 13 beginning at 2 p.m. (EDT) and will last for one hour. All that is needed to participate will be a toll free numbers. For family caregivers that wish to follow along on the computer there will be a corresponding Power Point presentation.
For registration, information for the free teleclass, send an email including a name, phone number and email address to teleclass@thefamilycaregiver.org or call (800) 896-3650.
For more information on National Family Caregivers Month, visit National Family Caregivers Association.
For more information about Care Connection, contact 1-(800) 782-4747 or alsainfo@alsa-national.org
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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