Ask Ben: Trying to Stay Active

My husband has ALS. He used to love to ride his bike. But he can no longer do many things he used to do. Is there something he can be involved with, that allows him to be a little active, even though it is not at the same level it was before. - Joan, Nassau County, NY
Joan, you capture an experience of many people. As ALS progress, muscles are not doing what they used to, and it’s a difficult adjustment to ‘give up’ activities one is so used to doing. From hard exercise to light walking in the neighborhood, change becomes a constant. The loss of muscle function is difficult, but there are alternative ways to stay active.

One outdoor activity as an alternative to bicycling is hand-cycling. These are basically low to the ground tricycles for adults that operate by hand. When on the hand-cycle, your legs are stretched out in front, while your hands are doing the pedaling. Upper body capability is certainly needed, but there is no ‘balancing’ required like on a bicycle, as the two wheels in back and one in the front keep you firmly on the ground.

If you're in New York City, the International Achilles Club has several hand-cycles available to try it out. They can be found in Central Park on Saturday mornings from 8:00am to 11:00am at 90th Street and 5th Avenue and it’s free. There are other organizations too, devoted to providing hand-cycle opportunities for little or no cost. If you are looking to get away for a weekend this fall, Simsbury, Connecticut (2hours from the Throgs Neck Bridge) is a small bicycle friendly town with a rail trail. Several locations loan standard bikes, and CT Adaptive Cycling is dedicated to get people with disabilities on a hand-cycle.

It is important to speak with your medical professionals to determine how much exercise is right for you.

- Ben
Ben Lieman, ATP, MSW is the Assistive Technology Specialist with the Greater New York Chapter, advising patients and caregivers about medical equipment, home accessibility, and augmentative communications devices. To ask Ben a question, simply email him at blieman@als-ny.org or call at (212) 720-3057. Ben will answer all questions directly as usual, but not all questions will appear in the Monthly Update.