November 2011
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This Month In . . . |
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Caregivers encounter many challenges in dealing with ALS, some of which include the new experience of providing assistance to those developing physical limitations affecting mobility, swallowing, speaking and breathing. Potential cognitive changes that may affect some diagnosed with Lou Gehrig's Disease can present additional challenges. An ALS diagnosis impacts every aspect of caregivers' lives as they adjust their efforts to meet ongoing work, family, personal and financial obligations, which change as this disease progresses. To help caregivers cope with the effects ALS has on individuals, our Chapter will provide various resources throughout November to empower them to address the daily issues they may experience in tending to a person with Lou Gehrig's Disease. These resources will include webinars, daily "Tips for Caregivers," and information on respite care and coping with burnout. In addition, throughout November, we are posting special video messages from people with ALS, ALS Association President and CEO, and Tony Award winning-actor Jason Alexander, who is perhaps best known as the character "George Costanza" from TV's "Seinfeld."
Ask the Doc: Q & A with Edward Kasarskis, MD, PhD Edward Kasarskis, M.D., Ph.D. is Director of the multidisciplinary ALS Center at the University of Kentucky Neuroscience Center 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: Like many people, I’ve had a few chronic conditions develop over the years. Now, on top of all that, I’ve recently learned I have ALS. What should I know about how the ALS affects other health problems, and how other health issues affect ALS? A: ALS doesn’t exist in a vacuum. It happens to you when you’ve been busy living your life. If you have had injuries or other medical conditions, ALS piles itself on top of whatever else you and your healthcare team have been managing. Sometimes other issues suddenly spring up while you’re dealing with ALS. All these situations are termed “co-morbidities,” which basically means that two or more conditions are occurring at the same time and may complicate your treatment and care. Sometimes the complexity of the co-morbidities can even affect your doctor’s ability to make the diagnosis of ALS itself. For example, I recently saw a patient in our ALS clinic who had previously had a motorcycle injury to his neck and spinal cord, then had a spinal fusion, and then a nerve injury at his elbow causing hand weakness. Now he appears to have new progressive weakness on top of all this, but his co-morbidities make the diagnosis of ALS much more difficult. Some people with ALS also have chronic obstructive pulmonary disease (COPD) from smoking or asthma, both of which can make the respiratory problems due to ALS more difficult to manage since these patients are essentially fighting two separate disorders affecting breathing. Others with ALS also have diabetes, heart disease, or cancer and some have had years of sleep apnea. Patients may also have liver dysfunction, which could potentially affect their ability to take Rilutek® (riluzole). As you can imagine, ALS plus another major condition is sometimes much more that 1 + 1 = 2. For these reasons, it’s critical when you have several different conditions to make sure that everyone on your healthcare team physicians, respiratory therapists, nurses, physical therapists, and others is aware of your total health status. Bring a list of all your diagnoses and all the medications you are taking with you to each healthcare appointment. It’s also critical to be sure other healthcare providers, such as dentists, are also aware of the full spectrum of diseases you’re dealing with. Sometimes it may be helpful for physicians to talk with each other by phone about your situation, especially if your condition is changing or if you are planning to have surgery or start a new treatment. You may also experience new symptoms and wonder, “Is this due to ALS or something else?” Ask your neurologist and other members of the clinic team when you have such a question. They usually can help you sort out how your various issues and medications may be affecting you. Be prepared for your physician and clinic visits. Bring a checklist with your questions and concerns. As I often tell people, “the best prepared patients get the best care.” This is true for anyone with multiple diagnoses and especially true when one of the diagnoses happens to be ALS. 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. New Information to Better Navigate the VA System of Benefits Information is available now to help veterans and their families understand the benefits available through the VA and better navigate the system. Helpful fact sheets on “Catastrophically Disabled Veterans” and “Enrollment Priority Groups” are now available through VA Health Care. For copies, go to:
Advice from the Trenches
Sandra Lesher Stuban is an RN who was a 38-year old Lieutenant Colonel in the Army when she was diagnosed with ALS. She’s the author of The Butcher’s Daughter: The Story of an Army Nurse with ALS, in which she describes her journey openly and honestly. Although she is completely paralyzed and uses a ventilator, she lives an active life as a writer and nursing leader. Q: Do you have any suggestions about how to enjoy the holidays? I find myself sad that I cannot do things the way I used to and feel a little overwhelmed, but I want to do all I can to enjoy my family and friends and to help them have a good time, too. A: With the holidays fast approaching, it’s a time for family get-togethers, giving thanks and sharing fun times. But with ALS intruding in our life and lifestyle, it’s easy to fall into a mindset of believing that this year will never be the same as last year which leads to disappointment and unfulfilled expectations. It’s necessary to change this way of thinking from being consumed with the negative to taking a more positive approach. Here are several things to consider and think about as the holidays draw near.
So, there is really no reason why this holiday season can’t be as memorable and enjoyable as any! 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. Caregiving Has Its Rewards
In another study of 900 women, Fredman and her colleagues learned that high-intensity caregivers maintained stronger physical performance than did non-caregivers. Their strength was measured by tests such as grip strength, walking pace and the speed with which they could get up from a chair. The researchers also looked at cognitive function and found that caregivers do significantly better on memory tests than do non-caregivers. The bottom line: the challenging and stressful role of being a caregiver can bring unexpected physical and cognitive benefits. For more information on this research, visit http://onlinelibrary.wiley.com/doi/10.1111/j.1532-5415.2010.02808.x/abstract The Unique Challenges of Long-Distance Caregiving
Day in and day out, caregiving poses a broad set of challenges. But for those family members who live far away but want to be supportive and involved, there is a unique combination of problems. That’s because there is often a combination of anxiety, guilt, frustration, confusion, and a sense of disconnection. Polly Mazanec, an assistant professor of nursing at Case Western Reserve University in Cleveland, did a study looking at the plight of long-distance caregivers who number an estimated 14 million in the United States. She found that they are typically more anxious than are local caregivers -- who are able to see what is happening for themselves -- and often feel out of the loop. Top concerns of long-distance caregivers include lack of knowledge about what is going on and a sense of being disconnected from the decision making. They aren’t certain when to visit, and they sometimes feel they can’t trust information they hear from siblings or others, sensing their relatives might be trying to protect them. When they ask questions trying to better understand the situation, they feel they upset their family members, who sense the long-distance caregivers are second-guessing their decisions. Opening up avenues of communication with the healthcare team is important to many long-distance caregivers. Most want to be able to talk directly with their loved one’s healthcare providers now and then and hear what is going on directly. With the person’s permission, there is no reason members of the healthcare team can’t talk with long-distance caregivers. Seek them out by phone or email. Being in the information loop can help you know what would be most helpful to everyone involved. Mazanec says that while physical hands-on caregiving is exhausting, emotional caregiving (from a distance) is actually even more distressing. What can long-distance caregivers do to improve the situation? Here are a few suggestions from Mazanec and others:
Participate in these Educational Web Calls New Gene? Ubiquilin-2 Speaker: Teepu Siddique M.D., Northwestern University Feinberg School of Medicine Learn more about the identification of a new gene linked to familial ALS, Ubiquilin-2, involved in the processing of accumulated proteins. Call-in toll-free number (US/Canada): 877-668-4490 -------------------------- Celebrating National Family Caregivers’ Month During National Family Caregivers’ Month, The ALS Association’s national office will host a series of webinars designed specifically with the needs of caregivers in mind. A wide range of topics will be presented to help inform, support, and encourage caregivers. Choose to attend one or to attend them all! 11/21 Monday, 11:00 AM Pacific Time* 11/29 Tuesday, 11:00 AM Pacific Time* This presentation will cover what portion sizes in an oral diet would be needed to meet nutritional requirements as well as what volume of fluids/water are required to meet basic hydration needs. Different types of tube feeding products and oral supplements will be discussed that help meet these needs. Tube feeding administration methods will be explained and a few case studies presented to encourage questions and help the audience troubleshoot common diet/tube feeding issues such as intolerance and optimal time for tube placement. Call-in toll-free number (US/Canada): 877-668-4490 *All webinars are listed in Pacific Standard Time. Please be sure to adjust the time for your time zone.
Military Veterans are approximately twice as likely to die from ALS as those in the general population. For Veteran's Day, The ALS Association has created a Wall of Honor on our website to help put a face on this disease and pay tribute to our military men and women with ALS. Visit the wall at http://www.alsa.org/advocacy/veterans/. Are you a veteran living with ALS or the family or friend of a veteran who has been lost to the disease? If so, we encourage you to share the photos and stories of the heroes who have served our nation. The ALS Registry Turns 1 Year Old! On October 19, 2010 the ALS Registry launched, allowing every person living with ALS in the United States to self-enroll in the single largest ALS research project ever created and is designed to identify ALS cases throughout the entire United States. The Registry is still collecting critical information about the disease that will improve care for people with ALS so researchers can learn what causes the disease, how it can be treated and even prevented. If you or a loved one has ALS and have not registered, please consider enrolling today. Visit our website for more information and instructions at http://www.alsa.org/als-care/als-registry/.
Fighting Lou Gehrig's Disease One March at a Time
For the third year, Marching for ALS, a subsidiary of Marching for Hope, has taken university marching bands by storm in order to spread awareness and raise funds for the fight against Lou Gehrig’s Disease. Each school will choose a home game where the marching band will dedicate their halftime performance to those who have fought and continue to battle this disease. “By collaborating with university marching bands, The ALS Association has the unique opportunity to raise ALS awareness among university students and fans,” said ALS Association President and CEO Jane Gilbert. “We appreciate the support from everyone involved in this campaign and welcome their support in the fight against Lou Gehrig’s Disease.” This year, 13 schools have signed up for this campaign, which runs through December 3, 2011. For a full list of schools and marching dates, please visit www.alsa.org/marchingforals.
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Each November, The ALS Association recognizes 
We all have heard the litany of problems associated with long-term caregiving. But a new study suggests there are hidden benefits as well. Lisa Fredman, a Boston University epidemiologist, had been studying the differences between caregivers and non-caregivers in four cities and found that caregivers had lower mortality rates than do non-caregivers, over an eight-year period. 
By Barbara Bronson Gray, RN, MN
Saluting Our Military Veterans with ALS
The ALS Association is proud to partner with Ocean 2 Ocean Productions to bring the Marching for ALS campaign to university marching bands throughout the country. 
