Multiple Sclerosis Centers of Excellence
Planning Your Activities and Designing an Exercise Program
Lucinda Hugos, MS, PT
Learning the best way to exercise after developing a life-changing disease like MS can be challenging. One person with MS described it this way:
“I got a new doctor, and she put me right with a therapist. I thought, ‘Oh, this is dumb. I don't want to go.’ The therapist asked me to put together a diary about what I did during the day and when was my worst time for fatigue. I told her that I experienced fatigue all the time. She asked me to keep the diary for a few weeks and check back in with her. I did keep the diary for a few weeks. And when I went back and read it, I realized there was a pattern as to when my peak time for getting stuff done, and when I was just too tired to move. So I looked at my diary and started planning my day based on the times when I had a lot of energy. I realized that it was a tool I could use - it worked for me.”
What is an activity diary?
Many people have found an activity diary to be a very useful tool. When you keep an activity diary for three to four days in a row (and during periods where you are doing regular activities), you start to see patterns of what you are doing. Once you see these patterns, you can change your activities so during your times of energy, you do activities that require energy and during your low energy times, you do things that do not take a lot of energy.
Do I need to change my activities?
When you get into a habit of doing things in a certain way and then you get a diagnosis of MS, it forces you to do some things differently. It can be difficult to recognize that you have to change the way you do things. It can be difficult to change life habits, and that is where health care professionals fit in - helping people through that process of change by directing them, and showing them that there are different ways to do things. It is jarring enough to be diagnosed with MS, let alone all of the changes that are going to have to take place in one's life.
How do I set myself up for success?
When a person has decreased energy, setting goals, then prioritizing these goals is a very effective way of getting what is important done. Priority setting is typically based on the list of what needs to be done, what you would like to do, and what would be nice to do. The activities that are ticked off on any particular day are determined by the energy level of the day.
So how do you go about identifying what a goal ought to be? It should be something realistic, that you can achieve, and it should be specific. The more specific it is, the easier it is to tell if you have achieved it. It should also be something that can be done independently. You should not have to rely on other people to achieve this goal, and you should write it down so you can review it regularly. One activity that should usually be included to help maintain function, (even if it was not a habit before) is exercise.
Why is exercise important?
Exercise is important for a number of reasons. Exercise can help minimize some general health diseases such as cardiac disease and diabetes (as well as others) that can affect people with or without MS. It is also important in helping to minimize the impact of some of the problems that MS causes, such as weakness. If you can maintain your strength and ability to move about, then you are going to minimize the impact of some of the other problems.
People with MS are at risk of becoming deconditioned. Exercising and participating in a regular exercise program can help prevent this. It is definitely one of the recommendations of the National MS Society fatigue guidelines, and emphasized in their fatigue and MS video series. For it to be effective, you have to be committed to doing it, and doing it regularly.
To prevent exercise from becoming boring, it should not be the same activity all the time. You should choose a variety of activities, but whatever you choose to do, you have to participate several times a week for exercise to help. To make it easier to exercise regularly, the most important thing is to schedule your exercise. By exercising regularly, you will learn more about yourself and become an expert in conserving energy, as well as become more efficient and thoughtful about how you are spending your time and energy.
What type of exercise is best?
Health care providers need to be aware of disease-specific issues when recommending exercise that is appropriate for people with MS. Fatigue is often a major issue when considering endurance or cardiovascular-type (aerobic) exercises, and choosing an appropriate exercise plan can be a challenge. Typical methods of exercise for people with MS (as well as others) include walking, jogging, riding an exercise (or street) bicycle, or swimming.
If people are having difficulty walking, often a safe exercise program is using an exercise bicycle. The advantage of an exercise bicycle is that when people become fatigued, they are still at home and do not have to figure out how they are going to get home.
As MS progresses, it is common to have to shift to a different mode of exercise. Some people have to make this shift early on. They might have initially been a jogger and they no longer have the energy to keep jogging and need to explore other exercise options. Because it is easy to get into patterns and it is hard to change things on your own, it can help to have a professional evaluation. The VA system has a wonderful system of health care professionals that are available to Veterans, and most Veterans have access to physical therapists.
How often should I exercise?
It is generally recommended that people should exercise aerobically three to five times a week. This includes people with MS. As the goal, the duration of aerobic exercise should be 20 minutes or more of exercise each day. Unfortunately, because fatigue is a major MS symptom, starting out exercising at 20 minutes per session is usually not very realistic or possible.
Often people need to start out at three to five minutes at a time. Some will ask, "Is it even worth doing if I'm only doing it three to five minutes?" The answer to this is that you have to start somewhere, so you start with what you can do and then you build on success, and build on success, and slowly increase your exercise time. Most people cannot jump from three to twenty minutes in one exercise session. An alternate approach is trying two 10-minute sessions, which can be very beneficial.
The plan should be to start with three to four minutes, next increase from four to five minutes, and then from five minutes to seven minutes, etc. Remember, you can remain at those periods for as long as you need to until you are ready to go up to the next level. Exercising can help the psyche as well – and it is not just the physical aspects. Exercise endorphins, which are chemicals our bodies produce, that make us feel good are released during exercise. So there are physical and emotional benefits to exercising.
How hard should I exercise?
You will hear many answers to the question “how hard should I exercise”. The “gold standard” is to monitor your heart rate, but this does not always work with people with MS. Some people find that MS causes numbness and tingling in the fingers and it is hard to feel a heart rate. If this is an issue, we generally recommend that you exercise to a level where a conversation can be held while still exercising. If you are having trouble carrying on a conversation, then you might be exercising a little bit too hard and need to slow down a bit. If you are able to converse without difficulty, then you probably are not exercising hard enough.
As you get stronger, you will want to increase the amount of exercise you do. One relatively painless way to get more exercise is to slowly increase the distance you park from a store (or other destination) each time you go. This will allow your body to strengthen itself while doing everyday chores. If you normally use a disabled parking pass, try parking in non-disabled spaces that are just a bit further away. You will find that you may be able to walk further as you gain strength. Of course, you can always use the disabled parking spot when you are trying to conserve your energy for the day.
This walking can be counted as exercise, although a planned, structured exercise program is best. Keep in mind that unstructured exercise tends to wear you out, and then you are at risk for not being able to participate in an activity that might be more important to you later in the day.
Budgeting your energy is important. An example of budgeting your energy is if you have an important meeting at work, you might choose to park your car close to the entrance of the building to conserve your energy. If you need to be fully alert in the meeting, then you would want to conserve your "parking lot energy" for the energy that you will need for the business event. Walking a greater distance another day would make more sense.
People with MS need to be very careful about how they spend their energy and wisely choose their activities.
What is overheating when exercising?
When people with MS exercise – in fact when anyone exercises – we get warm. For people with MS, heat can be a big issue, because it causes more fatigue. Doing strenuous exercise can be more of a problem for people with MS because often the ability to sweat – a body cooling mechanism – does not work normally. For some people, MS can affect the ability to properly sweat and to reduce overheating while exercising.
In fact, people with MS can become overheated with little to no exercise. For example, they can experience becoming overheated when out in the sun. There are a number of things you can do to help make up for the lack of (or reduction in) sweating that we do not typically think about. One method to prevent overheating is to dress in light clothing or layers of clothing that you can peel off as you warm up during the day. Another strategy is choosing to do your exercise in a cool room or environment to help with cooling your body down. If the rooms that you are living in are not cool, you might want to try to maintain a cooler temperature at least in the room where you exercise. Some people have used circulating fans to help cool their bodies during exercise. Having a cool beverage that you can take sips of now and then will really help keep you cool as well. If you swim as part of your exercise, try to swim in a pool that maintains a cooler temperature.
Another refreshing tip is to have a water spray bottle handy to spritz yourself as needed. In addition to helping you feel more comfortable, if you are someone who does not sweat normally (or enough), the spray/misting bottle will help provide artificial sweat and help cool your body down.
Conclusion
We have covered a lot of information in this article, with many tips that can help make exercise become (or remain) part of your life. You may want to consider asking your provider about a referral to a physical therapist for help developing an exercise program that is specific for you. Exercise can become part of your life with just a few modifications. VA medical facilities are staffed with physical, occupational, and recreational therapists that can help you design an appropriate program to help you “live with MS” more effectively.
