Although individuals with multiple sclerosis (MS) seem pretty clear on the idea that exercise is helpful in controlling some of the disabling effects of the disease, it always surprises me that there is less awareness of the opposite, that not exercising may actually make the disabling effects of MS worse.The combination of disuse, sedentary lifestyles, and inappropriate compensatory movements, leads not only to a loss of mobility, but may actually prevent the nervous system from undergoing reorganization that is a necessary part of functional recovery.
The idea that the nervous system is capable of specific change as a result of specific activity is referred to as neuroplasticity. Neuroplasticity means that a brain is capable of healing itself to some extent. When the activity that the person with MS performs results in functional improvements, it is called adaptive neuroplasticity, meaning that the brain changes itself in a positive way. However, if the person with MS engages in a sedentary lifestyle, performing little or no exercise or mobility activities, the brain will adapt to that as well. This is referred to as maladaptive neuroplasticity, and can lead to a worsening of disability. As a multiple sclerosis physical therapist, I try to make, as many patients as possible aware of the fact that there are consequences to immobility, and that avoiding it as much as possible will result in the best outcomes.
*Herb Karpatkin, PT, DSc is a physical therapist specializing in evaluation and treatment of persons with MS. He is a professor of physical therapy at Hunter College in NY, and owns a private practice specializing in MS treatment and care.
My exercising pursuits probably started at age one and a half when my foiled gymnastics routine failed to propel me out of the crib. Already I showed signs of being active and rambunctious and my “antics” did not stop despite stitches from my failed attempt. At age six my mother watched in horror as someone pointed to a young girl, her daughter, about to jump from the high diving board. Finally, at age eight she enrolled me in PAL (Police Athletic League), in an effort to allow me to channel my excess energy constructively.
I continued an active life style throughout my life, until I was diagnosed with MS.
In August of 2009 I was training for my first half marathon when I was diagnosed with RRMS. The diagnosis came as a shock to me because I was not only fit but maintained a healthy lifestyle. The news, was a shock to me and I wasn’t sure how to cope.
After the diagnosis I shut everyone and everything from my life, including running and working out. I could not envision going for a run and collapsing from an MS episode. I truly had no idea what to expect but I had anticipated the worst of what could happen. I couldn’t go to the gym and have my ego remind me of what I could no longer do.
As I struggled with the disease I became increasingly depressed. In the past, running would always assuage any crisis I had to face; I no longer had that outlet to release my depression and frustrations. It was a catch 22 – if I went out for a run I could collapse (in my mind) and if I didn’t I would sink further into an abyss that I had created.
It took months for me to realize that I had hit a wall built not out of mortar but fear and indecision. MS had already proven to me that I would not have the same life that I had enjoyed in the past. So, why could I think that I could easily go back to my “old” form of exercising? Reluctantly I had to give up starting off at the high diving board and had to wade into the kiddy pool instead.
And so as my frame of mind changed so did my temperament and condition. I started jogging slowly, almost at a walk, and much less distance than I was accustomed to. I had no delusions of grandeur, only of building up my courage and stamina at whatever pace I could manage at the time.
I also changed to a gym that had a pool. Swimming was an activity that I had not done since I was a kid. I wasn’t strong but I just wanted to get into the pool and swim a few laps at a time. The warmth of the water me gave me the impetus to stay in longer and achieve a little more each time. There was a familiar and safe emotional sensation that would flood my senses as the memories that I had as a kid, swimming in Puerto Rico and the JCC (Jewish Community Center), would come to the surface.
My legs finally started getting stronger and my attitude shifted to one of jubilance. I became more positive about the future and my life with MS. I realized how much I missed exercising. It had always been such an important part of my life. But more so, the endorphins that were released while I worked out had a positive impact on how I felt.
I also realized that it didn’t take much for me to fulfill the joy that exercising once brought me. It was as simple as exercising with light weights, going for a walk, or aerobic swimming.
I didn’t have to try to set out to break any type of record. I needed to listen to my body when it was telling me that it was as important to exercise my body muscles as it was the brain muscles. If I didn’t use them they would atrophy, as they were already doing. And, when my body was tired I needed to heed and do less.
My “baby step” routine continued until I was finally able to run my first half marathon last year and four months later completed an 817 mile hike through the Arizona Trail.
We all have different compositional make ups. Our MS symptoms are different and so we need to tailor our activities according to our capabilities. Any form of exercise, at our own pace, is instrumental to our physical and emotional and well being.
Please note: If you are looking to start any new exercise routine you should first consult with your physician.
Don’t miss your chance to be a part of the action!
Dive into Swim for MS today!
MSAA is pleased to announce a new prize for participants in the Swim for MS program: beginning in March, the top fundraiser for the previous month will receive an autographed photo of Missy Franklin! (Our first monthly prize will be awarded in March to the participant who has the highest Swim for MS fundraising total for the month of February.)
Missy Franklin MSAA Swim for MS Ambassador
About Swim for MS
Swim for MS is a national fundraiser in which volunteers are encouraged to create their own swim challenge while recruiting online donations to support MSAA and the MS community. You can participate individually or recruit other swim enthusiasts to form a team.
Participation as easy as 1-2-3!
To register, please go to SwimForMS.org. After you complete your registration, select “Access your Participant Center Now” to create your online fundraising page! To inspire you, please check out our Swim for MS Profiles for examples of how to create your Swim for MS challenge
To give is to receive…..as a student I was taught to avoid cliché’s like this in my writing. However, I’ve found that phrases like this stick with us because so often they are true! Giving does feel good, and this isn’t just my opinion. There has been a great deal of research in the last decade showing that people who volunteer and give of themselves have a greater chance of being happy and healthy than those who do not.
In a review of research on the health benefits of volunteering, published by the Corporation for National and Community Service, several of these studies are cited. Giving of ourselves is shown to increase our sense of purpose, self-esteem and life satisfaction while decreasing feelings of depression. Studies that looked at volunteering by those with chronic illnesses found that those who volunteered achieved greater health benefits than those who relied on medical treatment alone. Service goes beyond the obvious benefits to the community group being served. It benefits the giver.
As we continue our January themes of wellness and self-care, this seems like a win-win to me.
On Monday we will celebrate the spirit and generosity of Martin Luther King, Jr. Dr. King believed we all had a duty to serve others and that through our collective actions, social problems could be solved. In 1994, Congress declared the Martin Luther King, Jr. Holiday as a day of service. Rather than taking the day off, we are encouraged to find ways, big or small, that we can give, benefitting our community and ourselves.
What are your plans for this day of service? Keep in mind that not all service requires a great deal of time or money. Kindness can fill a need as easily as dollars. There are many ways to volunteer or serve:
Perform random acts of kindness: smile at a stranger, hold the door for someone, or joyfully give directions
Volunteering can be fun as well. If you are looking for a great way to involve your friends and family in service, try MSAA’s Swim for MS. Take time on Monday to plan your Swim for MS event. Whether you are swimming laps or playing inner tube water polo you can raise awareness and funds while receiving the benefits of exercise and laughter – a true win-win. No longer will the cliché be “give until it hurts,” but rather, give until it feels good!
MSAA is very proud to present our 2012 Art Showcase – celebrating the work of artists affected by MS.
January Artist of the Month:
Chenne Richardson – Columbus, OH
“I have always used art as my muse. But, I never dreamt that one day it would become my salvation. In the beginning I can recall the pieces being heavy, dark, desolate, full of fear and anger. Basically being reflective to how I felt. Now 10 years later you can see the emergence of light and color emitting from each piece. I never thought in my wildest dreams that one day I could or would find peace living with MS. But today that is exactly what I have.
So we’ve again encountered the infamous month of January, a time well known for resolutions and changes that people promise and strive to achieve to mark the beginning of a new year. Individuals find themselves embarking on new exercise regimens, dietary guidelines and lifestyle changes that they hope to keep for the duration of the year. With these changes comes a responsibility of self-awareness; to know and understand one’s limitations and to remain accountable for self-care. It is difficult at times to try and keep track of your activities and the goals you set for yourself. Perhaps for this new year you can keep track of these things in a notebook or journal to help stay in tune with the plans you made for yourself for the upcoming year…
As we begin the new year, many of us will make a pledge to get more fit this year. As we heard from our PT specialist anyone with MS needs enter into an exercise routine with the supervision of a trained professional. With that said I would like to share my experience this summer with adapted aquatics.
This past summer I was able to experience a unique opportunity of an adapted aquatics class at the Shepherd Center in Atlanta, GA. As Swim for MS is a major part of MSAA’s work to enhance the quality of life of everyone affected by MS, and adapted aquatics is often a go-to complimentary wellness option for individuals those living with the MS, I was asked to take part in a local adapted aquatics class at Shepherd Center. Throughout my career, I’ve often recommended aquatic exercise for anyone looking for an exercise or social activity, but ironically I had never taken part in it myself. So on a weekday morning in mid-August, I jumped into the pool with five MS patients and got to work on some really fun and useful exercise techniques.
The class I participated in was for those considered “ambulatory patients” while a separate class for non-ambulatory patients was offered afterward. With adapted aquatics, everyone gets an opportunity in the pool!
The class began with standard stretching, and then leg strides from one end of the pool to the other, on the shallow end of course. During these initial exercises, I was able to get to know some of my fellow classmates and learn a little bit about how they were diagnosed and just what their day–to-day experiences with MS are like.
The class then picked up as we began to use underwater step-stools to exercise our leg muscles, while also utilizing balance techniques, this last exercise was one of the more challenging! . This was the point where I struggled the most. Finally, in the third portion of the class, we used water weights to exercise both our triceps and biceps. It was neat to see how water actually creates greater tension when using the weights than the fairly weightless pieces of equipment create on their own. All the while, I was making great friends of my classmates, talking to them about MSAA and some of our services and helping encourage them at any point of struggle. The look of sheer accomplishment on each class member’s face when they were able to get through an exercise they felt difficult was really inspiring!
In all, this was quite the eye opening experience. The value of these kinds of resources are incalculable. If you happen to live near an area with an MS-specific aquatic exercise class, please make sure you take advantage of it! Beyond just the wellness quotient, you get a chance to make some really good friendships as well!
For more information about aquatic exercise in your area, call contact our Client Services Department at(800)-532-7667, extension 154 or email: msquestions@mymsaa.org.
It is important to have some flexibility in modifying the federal exercise guidelines slightly to allow for more of an individualized plan, such as exercising for shorter periods, planning rest breaks to allow for faster recovery from exercise bouts, and keeping core temperatures as cool as possible while raising your heart rate are all simple considerations that can make exercise more easily tolerated. The primary thing I suggest to my patients is that they should do whatever type of exercise they enjoy, the theory is that if you enjoy it you are more likely to prioritize it in your busy schedule. Since we don’t know exactly what types of exercise are most helpful to someone with MS, combining some aerobic and some strengthening exercise is ideal. Individuals with the progressive forms of MS should be given more guidance on how to maximize their current energy levels and should seek out professionals such as occupational therapists (OT) who can provide concrete steps for managing or modifying daily tasks that have become more difficult. It is also important to consider the addition of technology, such as functional electrical stimulation, for strengthening the lower extremities or at least preventing further loss of muscle strength, and focusing more on the upper extremities for aerobic benefits, much of this can be learned from a good physical therapist (PT).
The health benefits gained from regular exercise are well known, from improving cardiovascular health, to bone density, strength, cognition and emotional well being, to name a few. All of these should be a priority for people with MS but a primary problem still lies in convincing people to exercise, and to do it on a regular basis. Any ideas on how to do this would be a great addition to this blog, and I would appreciate learning more along those lines myself. For now, keep in mind that the evidence supports the idea that individuals with MS should be getting regular daily exercise, and the extent of what that means for each person varies considerably. I wish you all a happy new year and encourage you to make exercise goals for the year that are attainable and enticing to follow.
*Dr. Zackowski is currently an Assistant Professor in the Department of Physical Medicine and Rehabilitation and Neurology at the Kennedy Krieger Institute/Johns Hopkins School of Medicine. She is certified as a Multiple Sclerosis (MS) Specialist and works as the sole Occupational Therapist at the Johns Hopkins MS Center. Dr. Zackowski’s research interests are to investigate the mechanisms that underlie sensorimotor impairments and disability resulting from damage to the central nervous system so as to improve disability. To this point her studies have focused on the motor control problems that occur as a result of neurodegenerative disease processes such as multiple sclerosis. Dr. Zackowski’s current studies investigate the extent that nerve fiber changes in the brain and spinal cord are associated with changes in walking and physical impairments such as strength and sensation, in the context of an exercise strengthening program.
Many of my patients tell me that they don’t exercise because, “they don’t know what exercises to do.” This is a curious problem, on the one hand not exercising is a safe solution, after all, if you don’t know what the
proper exercise is then maybe you will be hurting yourself if you push yourself to exercise, especially if you have a chronic condition like Multiple Sclerosis (MS). On the other hand, if you don’t do anything at all, with or without MS, you are limiting your overall health.
Over the years I have had many discussions with patients about this topic and have come to realize that the answer is difficult in part because getting regular exercise is hard work, fatiguing, time consuming, etc, for anyone, and often much harder for someone with MS. Only 20.4% of adults in the United States actually met the federal physical activity guidelines in 2010. In fact, the CDC found that fewer than two in 10 Americans get the recommended levels of exercise, and more than a quarter of U.S. adults do not devote any time to physical activity. Federal guidelines call for 150 minutes of moderate to vigorous physical activity every week, including two days of full-body strengthening.
Those guidelines are for the average healthy person, how does someone with MS interpret them? How much exercise does a person with MS need? There is clear evidence that MS can affect endurance, cause pain and fatigue, effect walking stability, and make overall life tasks more difficult. In addition, there is rising evidence that exercise may have natural re-myelination capabilities. However, the heterogeneity of the disease and the multitude of symptoms that accompany it make it difficult to determine concrete guidelines for exercise. As a movement scientist who studies exercise and its affects on walking and balance for individuals with MS I have a vested interest in keeping up with the scientific evidence about this very topic. Based on the evidence that I am aware of most people with the relapsing form of MS should prioritize physical exercise along with disease modifying medications. Check back on Wednesday for more tips on exercising with MS.
*Dr. Zackowski is currently an Assistant Professor in the Department of Physical Medicine and Rehabilitation and Neurology at the Kennedy Krieger Institute/Johns Hopkins School of Medicine. She is certified as a Multiple Sclerosis (MS) Specialist and works as the sole Occupational Therapist at the Johns Hopkins MS Center. Dr. Zackowski’s research interests are to investigate the mechanisms that underlie sensorimotor impairments and disability resulting from damage to the central nervous system so as to improve disability. To this point her studies have focused on the motor control problems that occur as a result of neurodegenerative disease processes such as multiple sclerosis. Dr. Zackowski’s current studies investigate the extent that nerve fiber changes in the brain and spinal cord are associated with changes in walking and physical impairments such as strength and sensation, in the context of an exercise strengthening program.