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ALS Registry

November 2013


    Caring for Caregivers

    By Barbara Bronson Gray, RN, MN


    Nancy Sterling with her caregiver, Rachel Volavola.

    Nancy Sterling was living a busy life – she was a competitive swimmer, physical therapist and quartet singer -- when she noticed a slight foot drop and weakness in her left foot. Nancy suspected she had ALS and was diagnosed with the disease about a year later in 2007.

    After working for 30 years as a physical therapist, Nancy, 58, now types with her eyes and drives her wheelchair with her head, the only part of her body she can move. She cannot speak.

    Nancy, who lost her husband unexpectedly two years ago, lives in Salisbury, Md., between the Atlantic Ocean and the Chesapeake Bay.

    She understands caregiving from two different perspectives now. Before she developed ALS, she helped start Interfaith Volunteer Caregivers in two Maryland counties. There, the art of caregiving and receiving was simply explained: for anyone to be blessed by giving, someone must bless the giver by receiving. “Most of us have enjoyed the good feelings that come from being able to help another person,” she said. “Imagine if that person had refused your help?”

    Care receivers have an opportunity to gratefully accept help and let others experience the same good feelings they may have felt when they were able to give of themselves to others, Nancy noted. “I remember when I was a teenager I used to help to exercise a neighbor who had ALS, and she always made me feel better for having helped her.”

    Now Nancy relies on two caregivers who together are with her around the clock. The transition from independence to dependence was challenging for her. “It was hard for me to admit that I needed help. I didn’t want to need help!” she said.  She resisted receiving assistance until the point when she couldn’t get her legs into bed and was unable to fix her own food. “It was either accept help or starve,” she explained.

    Caregiving is Extremely Challenging

    Nancy understands that caregiving can be extremely difficult. She said caregivers often feel exhausted; overwhelmed by the changes that ALS progression brings; challenged by having to deal with equipment that often signals alarms and requires adjustments; worried about their own health; and deeply concerned about the future, and whether they will have the financial ability to pay for the care and resources that may be needed.

    People with ALS can do a lot to support their caregivers, whether they are family members or are paid to provide assistance, Nancy said. “Allow friends to be with you so your caregiver can get away for lunch with a friend, do shopping, or just to stay home and take a nap. A simple ‘please’ and ‘thank you’ goes a long way. I need help for everything, so my requests come often and can get tedious for my caregiver.”

    She also encourages others with ALS to recognize that while a lot of things are out of their control, they can take charge of their attitude. “ALS comes with many losses and much frustration, but none of that is the caregiver's fault. Avoid taking those frustrations out on those closest to you,” she suggests.

    Caring for Caregivers 10 16 13.jpgNancy also advises others to make sure their caregivers get the support, information and respite they need. Participating in support groups helps both the caregiver and the person with ALS know they are not alone in the challenges they face, she said.

    Both the person with ALS and the caregiver need to help maintain their relationship by doing things they enjoy together. “Watching a movie can help you maintain your sense of humor and keep your relationship intact,” said Nancy. She noted that it’s also important to have open discussion about how to meet new challenges together, take time to go to religious services, and be sure to hash out any disagreements as soon as possible.

    Nancy also suggests that people with ALS make it a point to talk about their advance directives and other legal matters so their caregivers know what they want. “There is real comfort and peace in having everything taken care of.”

    Learning to Accept Help outside the Family

    Some people find it especially difficult to adjust to a caregiver outside the family, Nancy said. “Sometimes we are not confident that someone other than our regular caregiver will know what to do, and sometimes the caregiver has the same concern.  I find that people want to help, they just don't know our needs.”

    Nancy recommends making a list of the people who say, "Call if there is anything I can do," and another list of things you need people to do. For example, you may benefit from having someone bring dinner, shop for groceries, visit with you while your caregiver takes a nap or goes out for a while, mow the grass, water house plants – and much more, she said.

    Nancy has friends who come on regular days. “The Friday friend takes care of my African Violets, the Sunday friend refills the bird feeders, the Wednesday friend takes care of my aquarium after she stretches me out to help make me limber, and the Tuesday friend takes care of the outdoor flowers,” she explained.

    Nancy also gratefully accepts the help of local high school students and scouts who are required to perform community service. “A friend's son gets his service hours cutting my grass, and the scouts rake leaves in the yard.”   

    The bottom line? Caregivers need caregiving too, said Nancy. “Just as you create a plan to get your own critical needs met, put some thought into ensuring the energy and happiness of the people who care for you.”


    Ask the Doc: Q & A with Edward Kasarskis, MD, PhD

    Dr Kasarskis

    Dr. Kasarskis

    Deciding When to Stop Working

    Q: I developed ALS about a year ago. I continue to work as a manager in what is an intellectually-demanding job, but it doesn’t require much mobility. Of course, I don’t know how long I’ll be able to continue. What should I consider as I decide when to resign from my job?

    A: As you might imagine, this question comes up frequently. There is no stock answer. Each person’s situation is different. Deciding when you should stop working is a personal decision that depends on many factors:

    • What benefits – psychological and financial – do you get from working?  You would need to have a plan for managing your income and health coverage issues and for ensuring you find a way to stay involved in something that interests you. Most of us get tremendous psychological benefit from the work that we do. What will you do to replace this?  Write a book?  Volunteer within your physical abilities?  Travel?  You will have to redefine your purpose in life. This is fairly standard retirement advice, but it applies to people with ALS.
    • The pace of your disease: How are you affected by ALS now? What have you been told by your neurologist about what to expect in the months ahead?
    • The nature of the work you do: How would changes in the impact of ALS affect what you are expected to do at work?

    For manual laborers – such as mechanics or those involved in construction, for example – the workplace can be quite dangerous if you have even a little bit of muscle weakness. But someone like you, who works at a desk, may be able to work longer. Even those who do detail work, such as dentists or jewelers, may be able to continue working, as long as they stop doing the particular tasks that their muscle ability will not allow.

    Many people with ALS continue working for quite a while but typically have to get job modifications. Talk with your physician, who may even be able to speak directly with your employer. The Americans with Disabilities Act provides certain protections you should know about.

    You should be aware that when you decide to leave your job and get disability retirement, the process takes time, even with the Medicare waiver for ALS. Planning ahead will be critical. The process will take at least three months, so get working on filing the application.

    Resources: For more detailed information from The ALS Association about how to access government benefits, see “A Professional’s Guide to Assisting Families with Obtaining Government Benefits.”

    Edward Kasarskis, M.D., Ph.D. is Director of the University of Kentucky ALS Multidisciplinary Clinic in Lexington, Ky., professor in the Department of Neurology at the University of Kentucky, and Chief of Neurology at the VA Medical Center in Lexington, Ky
    If you would like to submit questions for a future Q & A, please send your questions to Please understand that we won’t be able to address all questions, and we won’t be able to respond to individuals personally.



    Good News: Caregivers May Actually Live Longer Than Others

    A study by Johns Hopkins researchers published in the Journal of Epidemiology last month suggests that family caregivers may live longer than those who don’t care for a chronically ill or disabled person.

    The study, based on data from more than 3,500 family caregivers, found that being a caregiver doesn’t increase health risk. Caregiving is actually linked to a nine-month extension in life expectancy.

    David Roth on Caregiver Mortality 10 17 13.jpg

    David Roth

    “Taking care of a chronically ill person in your family is often associated with stress, and caregiving has been previously linked to increased mortality rates, said David  Roth, director of the Johns Hopkins University Center on Aging and Health. “Our study provides important new information on the issue of whether informal family caregiving responsibilities are associated with higher or lower mortality rates.”

    The researchers studied whether family caregivers showed differences in rates of death from all causes over a six-year period compared with a matched sample of non-caregivers. The groups were matched using a measure based on 15 common variables that included demographics, health history and health behaviors.

    The researchers found that spouse caregivers – even those who reported some caregiving strain -- didn’t appear to be at increased risk of mortality.

    “If highly stressful situations can be avoided or managed effectively, caregiving may actually offer some health benefits…including reduced risk of death for those providing care,” Roth said. “In many cases, caregivers report receiving benefits of enhanced self-esteem, recognition and gratitude from their care recipients.”



    Travel Tips: Speeding through the Long Lines

    By Barbara Bronson Gray, RN, MN

    With the holidays approaching, the prospect of crowded airports and long delays can be daunting for anyone. But for people with ALS and their caregivers, the challenges can be particularly stressful and exhausting.

    Experts say there are some good ways to avoid long waits when you’re traveling. Here are some tips:

    • Send your luggage straight to your destination. No more lugging your belongings, packages, or any equipment that you won’t need during your journey. Consider using the U.S. Postal Service. A Priority Mail large flat rate box costs $16.85, up to 70 pounds. United Parcel Service (UPS) and FedEx also offer attractive rates, especially if you don’t need the package to arrive the next day.
    • Use PreCheck security. Available at 92 U.S. airports, PreCheck allows U.S.citizens who have been “pre-cleared” to go through the security screening process more quickly. TSA PreCheck allows participants to keep their shoes, belts and lightweight jackets on. It also allows those pre-cleared to go through just a metal detector, rather than a body-scanner. Expect the program to be available in 350 airports by mid-2014. Apply for PreCheck online, and then verify your identity and get fingerprinted at a TSA PreCheck enrollment center. The application costs $85 and is good for five years. Learn more at PreCheck 10 23 13.jpg
    • If you’re flying out of the country, consider using a government program called “Global Entry.” It’s a U.S. Customs and Border Protection program that allows expedited clearance for pre-approved, low-risk travelers upon arrival in the United States. There are self-service kiosks at more than 40 airports. Once in the program, your passport and fingerprints can be scanned, and you can sail through immigration and customs. To join the program, you need a background check and an in-person interview. The fee is $100, and the membership is good for five years. Learn more at
    • Check into your hotel more quickly. Some hotels allow you to check in at lobby kiosks by just swiping your credit card. All you have to do is approve the reservation, and the kiosk gives you your receipt, room assignment and keys.  Some hotels have expedited check-in using your mobile phone, and others even allow you to check in at airport kiosks, allowing you to skip the hotel lobby experience entirely. Ask about such features when you’re making your hotel reservation or check with your travel agent.



    Learning to Put Worry Aside

    By Barbara Bronson Gray, RN, MN

    We all worry from time to time. It’s easy to find yourself focused on all the many “what ifs” in life.  But worrying can be exhausting, self-defeating, discouraging and depressing.

    What is worry? It’s allowing your mind to dwell on difficulty or troubles, creating anxiety or unease.

    Martin Rossman, author of The Worry Solution, explained that learning to stop worrying won’t remove tragedy or hardship from our lives. “But it can eliminate a great deal of tragedy and hardship that never actually happens,” he noted. The key is to separate things into those you can do something about from those you can’t and learn how to deal better with both, he added.

    “It doesn’t mean life is easy, but it can help us avoid making life harder than it needs to be,” Rossman said. Rossman and other experts say there are several things we can do to minimize the time and energy we put into worrying, freeing ourselves for happier and more productive pursuits:

    • Accept uncertainty. Worrying sometimes occurs when we are frustrated with the uncertainty of a situation. We Worry 10 17 13.jpgautomatically fill in the gap with worst case scenarios. Remind yourself that uncertainty is really neutral. The situation could turn out all sorts of ways. And to embrace uncertainty, you have to accept your own limitations. Try to release your natural desire to be in control of things
    • Note what issues are troubling you the most. Write them down. Address each one logically. For example, if you’re worried about a health issue, can you phone your physician? Do you need more information to make a decision? Write down the action you are going to take and follow through for each worry listed.
    • Enlist the help of your family and friends in your “anti-worrying” campaign. Tell them you’re trying to quit the annoying habit of worrying and ask them to help you regularly turn your attention away from the infinite realm of possibilities to the here-and- now. They, too, may realize that they need to tackle their own tendency to worry if they are to effectively support you.
    • Catch yourself in the act of worrying. At first you’ll probably notice you’re worrying about quite a wide range of things, from issues related to ALS to economic problems to all sorts of other things. You may not have realized that worrying has become a habit and an attitude. Evaluate whether your tendency to worry may be lowering your spirits and exhausting you.
    • Don’t allow yourself to focus on issues that might not materialize. Remind yourself that if and when something becomes a problem, then you’ll create a plan of action.
    • Actively deflect worries. Identify your most pressing issues and create an “action plan” for each. Think “I’ve addressed that” or “I have a plan for that.” Don’t dwell on the concern. Turn your attention to something else interesting or compelling.
    • Understand that learning to give up worrying may take some time. Like any habit, it will most likely take a while to overcome. Remind yourself that if you can’t plan action for dealing with something, you’re going to have to let the thought go.
    • Focus on the moment. Practice dealing with each day as it happens, enjoying all you can and appreciating the simple pleasures.

    Related Resources:

    • The Worry Solution by Martin Rossman, M.D.
    • The Worry Cure: Seven Steps to Stop Worry from Stopping You by Robert L. Leahy



    Participate in these Educational Web Calls

    Insights into Motor Neuron Disease from Drosophila
    Hosted and organized by The ALS Association’s Research Department
    Date: November 25, 2013 1.00 – 2:00 PM PST
    Speaker:  Brian D. McCabe, Ph.D. Assistant Professor, Columbia University, New York, NY

    How Caregivers Can Benefit from Assistive Technology Toolbox .jpg
    presented by Care Services, The ALS Association
    Monday, November 18, 2013
    11a.m. Pacific Standard Time (2 p.m. Eastern Standard Time)
    Call-in toll-free number (US/Canada): 877.668.4490
    Session number: 822 440 841
    Session password: Atcallnov2013

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