August is National Wellness Month, the perfect opportunity to explore the many facets of wellness for the ALS community, highlighting healthy habits that can help attain better physical and mental health outcomes.
For many people, regular exercise is a vital part of their wellness routine, the benefits of which have been proven to be beneficial not only for physical health, but for mental health as well.
But for people living with ALS, in the past the thinking had often been that exercise was not beneficial and might in fact be harmful. “A lot of individuals diagnosed with ALS heard things like be sedentary, don't exercise, don't be active. Sometimes even put yourself in bed,” said Claire MacAdam, a physical therapist at the Healey & AMG Center for ALS at Massachusetts General Hospital. “There was concern that exercise or activity may aggravate the condition and may accelerate the progression.”
However, that thinking has changed. MacAdam and her colleague Katey Burke (PT, DPT) presented the current thinking on exercise for people with ALS—that a well-planned, monitored exercise routine can be of great benefit for people facing the disease—on our recent webinar entitled “Movement Matters.”
As MacAdam and Burke point out, just as not two cases of ALS are the same, no two exercise routines for people living with the disease will be the same. But in consultation with your ALS care team, most people will benefit from exercise or movement in some form. “We do know with ALS the muscles are struggling and going through changes. So, we want to make sure that what we give the body is appropriate for what the muscles are able to do,” MacAdam said.
When crafting an exercise plan while living with ALS, it is important to note that the old adage “no pain, no gain” should not apply. Current consensus is to avoid a routine that causes muscle soreness and to avoid a feeling of overexertion that causes fatigue. In general, if you don’t feel you have recovered from activity within 30 to 60 minutes, that is the body's way of saying that it was probably too much.
As for what type of exercise is right for you, that will depend on a number of factors you’ll want to discuss with your care team. MacAdam and Burke outline five type of exercise or movement that may be beneficial for a person with ALS:
Stretching
Stretching is any muscle lengthening exercises that can help maintain joint integrity and range of motion. Stretching can help to prevent contractures, which can lead to loss of range of motion and can also be quite painful for people living with ALS. Stretching may also help make daily activities, like dressing, easier.
Stretching can be done individually or with assistance. However, when you are stretching, it should not be painful, and you should be sure to breathe throughout the stretch. “Daily stretching is ideal. Really everyone, or almost everyone, should be stretching daily to get muscle lengthening.” Burke said. “You really want to hold those stretches for about 30 to 60 seconds. Some people might benefit from longer, so again, it is individualized, and you should talk with your clinical team about what would be best for you.”
Cardio/Aerobic Training
Cardio or aerobic training refers to any continuous activity to assist with your cardiovascular health. These sorts of activities can also increase blood flow to your brain and extremities and are known to release endorphins which can help with your emotional health. When beginning a cardio or aerobic training routine, remember to start slowly and gradually build up if you are able. Be sure to monitor your breathing throughout the activity.
“When people think of cardio, they think more of walking and running and jogging. But you can get quite creative with the cardio work, so it's again good to talk with your team about it,” Burke said. If balance is an issue, a stationary bike might be a good option. Some people may enjoy swimming or aquatic therapy.
Resistance Training
Resistance training are activities designed to maintain or possibly increase strength in your muscles. As with other exercises you’ll want to consult with your care team on what sort of resistance training activities are right for you. “Even though we know that there will be weakness coming from disease progression, resistance training has the potential to make daily activities easier by keeping those muscles stronger,” Burke said.
As with all the activities listed here, you’ll want to start slow with any resistance training program, using light weights and doing few reps and building up from there if you are able. Your physical (PT) or occupational (OT) therapists can help ensure you are using proper form for any resistance training activities.
Balance Training
Balance training are activities designed to train your muscles to assist with your balance. These may be done in either a seated or standing position. These types of exercises are oftentimes folded into a formal PT and or OT program in the outpatient setting or in the home.
“The idea is (to see if) there is an opportunity to gently train or gently work muscles that help us when we balance. So that when I'm seated on the side of the bed and putting on a blouse, I have a little bit more control, or leaning forward to maybe slip on my shoes.” MacAdam said. “Or addressing ‘can I make my walking a little bit safe?’ A little bit more secure. And also, ‘can I work on some balanced training to reduce the likelihood of a fall?’”
Functional Activities
Functional activities are ways to fold or weave your daily activities into your exercise routine. Perhaps you already enjoy walking your dog or working in your garden. These sorts of daily activities can serve as cardio or resistance training and can also provide an opportunity to involve your family.
“The things many of us choose to do during the day, depending on how much time we have, are oftentimes the things that also bring us joy and are meaningful,” MacAdam said. “And that can just make an exercise routine even more fun.”
Remember that an exercise or movement program that makes sense for you today may not make sense in six months, or a year. But every person living with ALS can benefit from a program in some form. “Since we consider gentle stretching and range of motion one component or one piece of the exercise pie, there's always a place for that,” MacAdam said.
For additional information and help crafting an exercise or movement plan that works for you, please reach out to your local ALS care team.
To continue to follow stories about people living with ALS in the community and learn more about the disease, subscribe to receive our weekly blogs in your inbox HERE or follow us at als.org/blog.
Join the conversation. Please comment below.