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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. Tips for Bringing Fun Back Into Your Life Even with ALSIt’s a ridiculous understatement: ALS obviously isn’t any fun. But finding ways to have fun when you have ALS can considerably improve your quality of life. And depending on your interests and propensities, what you enjoyed before being diagnosed with the disease can still be available to you, with some modifications.
Not only are these sorts of activities diversionary, they’re stress busters. They help connect you to the life you enjoyed before you had ALS, help you meet new people and usually offer fresh air, and help you break out of your everyday routine. Many of the physical activities -- even if you now have to participate a little differently -- also provide valuable, healthy exercise. For example, one person with ALS always loved cycling, but has now switched to using a stationary recumbent bike, and cycles about 100 miles every month. Others with arm strength but leg weakness go kayaking, Some play wheelchair tennis. A gardener in a wheelchair uses raised beds to grow her vegetable crops and cut flowers. The options are broader than you might think. There are a wide range of organizations and companies that are dedicated to helping bring these activities even active sports into the lives of those with physical disabilities and chronic illness. Before taking on a new or modified physical activity, it’s a good idea to talk with your physician to ensure safety and comfort. It’s a ridiculous understatement: ALS obviously isn’t any fun. But finding ways to have fun when you have ALS can considerably improve your quality of life. And depending on your interests and propensities, what you enjoyed before being diagnosed with the disease can still be available to you, with some modifications. Much has been said about the value of humor in illness. Less has been written about the benefits of doing things you really like, whether it be gardening, photography, fishing, journaling, keeping an aquarium, doing puzzles, playing video games, cards, or even participating in sports or taking an online class. Not only are these sorts of activities diversionary, they’re stress busters. They help connect you to the life you enjoyed before you had ALS, help you meet new people and usually offer fresh air, and help you break out of your everyday routine. Many of the physical activities -- even if you now have to participate a little differently -- also provide valuable, healthy exercise. For example, one person with ALS always loved cycling, but has now switched to using a stationary recumbent bike, and cycles about 100 miles every month. Others with arm strength but leg weakness go kayaking, Some play wheelchair tennis. A gardener in a wheelchair uses raised beds to grow her vegetable crops and cut flowers. The options are broader than you might think. There are a wide range of organizations and companies that are dedicated to helping bring these activities even active sports into the lives of those with physical disabilities and chronic illness. Before taking on a new or modified physical activity, it’s a good idea to talk with your physician to ensure safety and comfort. Here are some helpful resources:
Take a Break: A Variety of Options for Family CaregiversIf there’s one characteristic shared by almost every family caregiver of any age, ethnicity, geographic location or educational level, it’s fatigue. Caregiving requires enormous amounts of time, energy, attention and sheer effort, and it gradually takes its toll. Taking time off, even for just a day or two, can help restore energy and perspective. To fill this need, there are an increasing number of respite retreat possibilities available.
Merida Johns is the Innkeeper at Bundling Board Inn in Woodstock, Illinois. Previously a professor of Healthcare Informatics at Ohio State University and the University of Alabama, she was also a family caregiver for each of her parents. So she started a retreat program at her Bed and Breakfast designed for family members, friends and professionals who are caregivers. People can choose a structured retreat, that includes a two-hour workshop, or can simply come and enjoy Merida’s hospitality. “Most people just need some free time to recuperate,” she says. “I suggest people find a place without intrusion -- because caregivers already have enough of that in their lives -- and a sense of serenity.” Merida also advises people to consider what pursuits or activities were most pleasurable to them before they assumed the caregiver role. If they enjoyed going to a concert or a movie, taking a walk, shopping, or just sitting down for a good cup of coffee or dessert, they should try to do that. Eboni Green, Director of the nonprofit organization Caregiver Support Services, based in Omaha, Nebraska, says she frequently sees the positive impact of caregiver retreats. “People come the first day and look worn out and tired, but they leave visibly refreshed and revived.” Some retreats are independent, like the ones at Merida Johns’ Bed and Breakfast, and others are connected with or run by larger organizations. Some organizations have a national reach, while others are more regional. The key is to find a retreat that is most likely to meet the caregiver’s needs for rest and recharging. Resources:
Book Helps Children
By Gary Wosk, Staff Writer |
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Much has been said about the value of humor in illness. Less has been written about the benefits of doing things you really like, whether it be gardening, photography, fishing, journaling, keeping an aquarium, doing puzzles, playing video games, cards, or even participating in sports or taking an online class.
Some are highly organized and structured, while others are designed with lots of free time and opportunities to restore oneself through simple activities from getting a message or taking a nature hike to catching a concert or a movie. 
The 30-page book includes the article “Telling Children about ALS” and “Developmental Stages Guidelines,” both written by Barrett, and features informational pages with pictures or illustrations about Lou Gehrig, muscles, the brain, motor neurons, changes that patients experience with ALS and grief. Activity sheets about feelings and emotions, puzzles and games about ALS, a word search, a motor neuron maze, a lesson on how to make a neuron with beads and a “Strike Out ALS” visor are among the book’s highlights. In addition, there are information sheets about: how to help, and ways to help let your feelings out, a “people who care about me” graph and a Lou Gehrig’s certificate of ALS knowledge. And finally, readers can find a memories page and fun-filled coupons designed for people with ALS, caregivers and children to share.