Ask the Doc:
Q & A with Edward Kasarskis, MD, PhD
Each issue we will feature a leading neurologist specializing in ALS responding to a question.
Edward Kasarskis, MD, PhD is Director of the University of Kentucky ALS Multidisciplinary Clinic at Cardinal Hill Rehabilitation Hospital in Lexington, Kentucky, professor in the Department of Neurology at the University of Kentucky, and Chief of Neurology at the VA Medical Center in Lexington KY.
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.
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Tips for Coping with Holiday Stress
They’re billed as the season of good cheer, but the holidays can actually be very stressful and depressing. For most people, according to the Mayo Clinic, there are three key triggers of holiday stress and depression: relationships, finances and physical demands. When you’re dealing with ALS, of course, it’s even more complicated.
While relationships can cause conflict or stress at any time, the holidays may exacerbate the tensions for all sorts of reasons. People who haven’t seen or talked for awhile are often put in one room, all together. Unresolved issues may arise, or may just cause a quiet undercurrent of unspoken discord. Many are grieving a loved one, anticipating a loss, or are separated by conflict or distance from someone they love.
During this time of extraordinary financial upheaval, budget issues may be another major source of stress. Expectations over the holidays gifts, cards, entertaining, travel may be tough to meet, especially at a time when other issues, such as the loss of a job or increasing healthcare costs may also be there.
And then there are the physical demands, from attending social gatherings to shopping, preparing for holiday meals, wrapping presents and sending cards. It all adds up. For those with ALS and their families who may already be experiencing fatigue and high demands for their energy, the holidays can be especially draining.
But there are things you can to do minimize the stress, fatigue and tension as much as possible:
- Be realistic. Don’t pack too much in. Allow others to do more of the cooking or preparing and build in the necessary time for rest and relaxation. Learn to say no; people will understand.
- Allow some changes in traditions. Whether you need to switch from big gifts to stocking stuffers, scale down your Christmas Eve dinner or just play Monopoly with friends on New Year’s Eve, allow yourself to simplify the celebrations. You may find you like it better than what you’ve previously done.
- Plan. Make a list and think through what needs to be done so you can avoid last-minute errands. Get as much done early as possible. Budget thoughtfully. Creativity goes far. Use the Internet to make price comparisons.
- Talk about your thoughts and feelings. It’s OK to be sad and it’s not uncommon to cry during the holidays. They bring back scores of memories and emotions. The people you love will want to hear what you’re going through. And be a good listener, too.
Resources:
- Kicking Your Holiday Stress Habits,by Donald A. and Nancy Loving Tubesing.
- The Don’t Sweat Guide to Holidays: Enjoying the Festivities and Letting Go of the Tension, by the Editors of Don’t Sweat Press.
- Simple Steps for Every Holiday: An Easy Plan for More Joyful, Less Stressful Celebrations All Year Long, by Lisa Lelas, Linda McClintock and Beverly Zingarella.
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ALS Association Program
Helps People with ALS Communicate
By Janet Young With grant support from DynaVox Technologies, http://www.dynavoxtech.com/, The ALS Association’s comprehensive Assistive Technology Consultation Program provides valuable education and training to staff at The Association’s chapters and Certified Centers SM of Excellence on the myriad communication issues and augmentative/alternative communications devices to help people with ALS during each stage of progression of the disease.
“We have found that when people with ALS lose their ability to communicate, they often become disconnected from the world around them,” shared Sharon Matland, Vice President for Patient Services. “One very important way we can help patients continue to communicate and stay connected is by providing information, education and support on augmentative communication and the resources available in the market place. The program, led by Alisa Brownlee from The ALS Association’s Greater Philadelphia Chapter, provides this kind of valuable information and is a resource not only to staff at our Chapters, Centers and clinics, but to any medical professional working with people with ALS.
Sponsored in part by DynaVox Technologies, a provider of communication solutions for people with ALS, the Assistive Technology Consultation Program provides practical tools to help chapter, Center and clinic staff in their day-to-day work related to the challenges people with ALS face as they lose their ability to speak. Among the components of the program are a special Assistive Technology electronic bulletin board for chapter, Center and clinic staff to post questions, information and resources to help patients secure reimbursement for augmentative communications devices, and ongoing clinical and technical support for speech-language pathologists and assistive technology specialists nationwide.
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An Article on Family Caregiving
A recent article by Jane Brody in the New York Times, “When Families Take Care of Their Own,” (November 10) discusses the rewards and the challenges of family caregiving. The first in a series of articles on the subject, Brody looks at the benefits of and examines the impact on the caregiver’s physical, emotional and financial health. For more information, visit: http://www.nytimes.com/2008/11/11/health/11brod.html?_r=1&adxnnl=1&oref=slogin&adxnnlx=1227209194-1Ip3WsGLIXYTx75APtUiHA
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IGF-1 Clinical Trial Completed
By Richard Robinson, Science Writer Subcutaneous (under the skin) delivery of insulin-like growth factor 1 (IGF-1), known as the drug Myotrophin, does not benefit people with ALS at a dose of 0.5 milligrams per kilogram of body weight, according to a large clinical trial whose results were announced.
IGF-1 is a substance the body produces to sustain motor neurons, the nerve cells that die in ALS. Experiments in animal models of the disease suggested IGF-1 treatment may delay death of motor neurons. IGF-1 was tested in ALS a decade ago in two trials, but the results of the two were inconsistent, with one suggesting treatment was beneficial, and the other showing no benefit.
“These results are deeply disappointing to all of us in the ALS community,” said Lucie Bruijn, Ph.D., senior vice president, research and development, The ALS Association. “The subcutaneous delivery route may be the key problem, or it may be that IGF-1 alone is not sufficient to rescue motor neurons.”
The current trial involved 330 people with ALS from 20 ALS treatment centers across the United States. Patients were randomly assigned to receive either IGF-1 or a placebo, injected under the skin twice a day, for two years. The dose used was the highest tolerated dose from previous studies. Neither doctors nor patients knew which treatment the patient had received until the end of the study.
At the end of the two-year treatment period, there were no differences between people with ALS who received IGF-1 and those who received placebo in muscle strength, the need for a tracheostomy for breathing, or survival, indicating that IGF-1 provided patients no benefit.
The ALS Association is the only national, not-for-profit voluntary health organization devoted solely to fighting ALS through research, patient services, advocacy and public education and information. The Association is currently exploring multiple new avenues for treatment through its TREAT-ALS (Translational Research Advancing Therapies for ALS) drug discovery program and clinical trials process.
For more information about The ALS Association’s research program, visit www.alsa.org/research.
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Walk to Defeat ALS
Back Bigger and Better
By Gary Wosk, Staff Writer The ALS Association’s national signature event, the Walk to Defeat ALS™, has proven impervious to the nation’s economic downturn as the event is continuing to grow in 2008 and is on a pace to soon raise nearly twice as much as it did only several years ago.
Since its inception in 2000, the Walk program has raised more than $81 million for services and programs provided by The Association’s community-based patient services program to people living with ALS and families and its cutting-edge, global research program.
In 2008, it is estimated that more than 100,000 people, including families, friends and corporate leaders who participate in 150 Walks across the nation will raise a record $16.5 million compared to $15 million last year.
The $1.5 million increase comes at a time when individuals are questioning the impact of the weakened economy on grassroots fundraising. However, it became increasingly clear as 2008 progressed that supporters, reminded of The Association’s mission, the Walk’s successful track record and the event’s ability to inspire hope, became more motivated to step up to the plate.
These supporters knew that if donations fell off, The Association’s ability to continue leading the fight to cure and treat ALS and provide comprehensive care and support to people living with the disease and their caregivers would potentially be adversely affected.
“Patients and families impacted by ALS do not get the year off,” said L. Ashton Chase, senior director of national signature events for The Association. “
With gas prices and the cost of food rising and real estate prices falling, we knew there would be fewer donors this year. We had to make sure donors knew we needed them more than ever.”
The Walk, cited as one of the main reasons why The Association has experienced solid growth in revenue since 2003, is expected to continue its trend of double-digit growth into the future and raise in the neighborhood of $30 million by the year 2012.
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Actress Angela Lansbury in High
Gear for Cure ALS Campaign
By Gary Wosk, Staff Writer Actress Angela Lansbury is as busy as ever increasing the public’s awareness about the need to support The ALS Association’s global, cutting-edge research program.
Famous for her work on Broadway, films and television, the inimitable Lansbury last spring launched the Cure ALS Campaign for The Association. The campaign features a series of highly dramatic radio and television PSAs to build support for research into new treatments and a cure for Lou Gehrig’s Disease.
Lansbury decided to join The Association in the fight against ALS in honor of her sister Isolde Denham who battled the disease in the 1980s while Lansbury starred in the CBS hit series “Murder She Wrote.”
Her most recent interviews as an advocate for The Association include ABC News Now Network’s “What’s the Buzz” in October and Parade magazine, tentatively scheduled to hit the newsstands on December 21.
In November, Lansbury’s TV public service announcement (PSA) aired on the CNN Airport Network and on stations across the nation. Her radio PSA also is receiving considerable air time.
The audience for Lansbury’s powerful message has even included film-goers, primarily in the eastern United States, as a result of the efforts of Clarke Mazza, the president and CEO of Pot O'Gold Productions, Inc. and the Florida Chapter of The Association. By the end of last summer, the PSA had been shown 175,000 times in independent theaters.
The Cure ALS media campaign has been a major success from the instant Lansbury introduced it last April on NBC’s “Today,” then on “CBS’ Weekend Roundup with Dan Raviv” and in an Associated Press story.
The Los Angeles Times, International Herald Tribune, Boston Globe, San Francisco Chronicle Examiner and Orlando Sentinel were among the newspapers that published the AP story. It is estimated that the AP story may have been read by more than half of the world’s population.
The availability of Lansbury’s PSA on MySpace, Facebook and You Tube also has been a major contributing factor to success of The Association’s debut on these social networking Web sites.
And, don’t be surprised to see Lansbury in the waiting room of your doctor; she is featured in the September/October issue of WebMD the Magazine.
“Considering that the media has had only limited print space and airtime to devote to charitable causes because of the presidential campaign, the economy and world events, the coverage this campaign has received so far is quite impressive,” said Jeff Snyder, vice president of communications for The Association.”
Lansbury will return to Broadway in February when she plays psychic Madame Arcati in the revival of Noel Coward’s comedy “Blithe Spirit.”
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Teen, Whose Dad has ALS, Offers
Personal Look into Advocacy Day
By Gary Wosk, Staff Writer Years from now, Catherine Swift, who soon will turn 15, her sister Emma, 18, and other young people with parents who have ALS, will be able to describe to their children and grandchildren how their efforts helped people fighting Lou Gehrig’s Disease and, hopefully, resulted in a cure.
Swift, a resident of Henderson, N.C., also will inspire future generations by pointing to the powerful article she wrote about traveling to Washington, D.C., in May 2008 with her dad, the Rev. Tom Swift, who has ALS – and participating in The ALS Association’s National ALS Advocacy Day and Public Policy Conference, something she will always cherish.
As a hospice chaplain with CarePartners Hospice and Palliative Care in Asheville, N.C., and an advocate for The Association, Tom Swift has been offering comfort and support to those facing death for many years. Even after the disease made speaking difficult, the well-known reverend accepted community invitations to talk about his experience living with the disease.
Catherine, who has inherited at least his knack for caring, writing and other positive qualities, values every moment she has left with her dad.
A ninth-grader who attends West Henderson High School, where she writes for the campus newspaper, is involved in student government, theater and service clubs, Catherine was a last minute replacement for the Advocacy Day trip because her sister had to stay home and take high school exams. As it turned out, the three-day experience marked a turning point in young Catherine’s life.
“The realization that I am doing something to help others with ALS really helped me feel better,” said Catherine, one day hoping to join the Peace Corps and to become a fulltime writer.
Catherine joined a large constituency from The Association’s Jim “Catfish” Hunter Chapter at Advocacy Day. She spoke to members of Congress about providing care to her 50-year-old dad, diagnosed with ALS in 2007.
In her article, she reflects on such subjects as helping Tom during Advocacy Day, how nervous she was about the prospect of addressing elected federal officials, what she told them, and shares these and other insights about the annual event.
“The article is mainly about how blessed I felt to have that experience, I was really glad to get the chance to spend time with my dad but also to fight ALS,” she said. “I also learned that from my dad that even though ALS is awful, there are definitely good things that can come from it. He and I are growing and learning. We want to touch others, reach out to them and share what we know.”
To read Catherine's article, visit http://www.alsa.org/news/article.cfm?id=1387.
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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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