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.

Stay tuned to MS Conversations throughout the month of January. Upcoming entries will center on the themes of Health and Wellness. We will ask experts in the field about their opinions on exercise and overall wellness strategies for individuals with MS. Let us know what questions you have and also what future themes you would like to explore by leaving a comment below.

All the best for 2013 from the staff at MSAA! We will be back on January 2, 2013 with a new post.

I still can’t believe it’s almost 2013! I hope everyone is having a wonderful (relaxing) time during the Holidays. I know that I’ve been extremely busy, but I make it a point to relax when I need to. During the Holidays, even though it can be stressful, I really do enjoy myself. For me, I spend my time enjoying the company of my family and friends and focus less on things I “should” be doing.

After the Holiday festivities are over, I don’t rush to my “to-do list”… Even if I haven’t done a lot of physical activities during the Holidays, it can still be a stressful, but wonderful, time. I have found that just relaxing completely and having ME time has helped a lot when it is time to get back in to the swing of things.

I read a lot post-Holidays. This helps me to feel less stressed.

Clear your brain, enjoy all of the presents you received, go grab a Holiday Starbucks Coffee and enjoy what you have in your life, no matter the circumstances! Yeah, I know we have MS & there isn’t anything we can do about it. Sometimes I get aggravated and angry and depressed, when my MS interferes with things I want or need to do but I won’t let it control me 24/7/365!

Talk to you next year!

*Written by Peggy Walsh:

What is your most tender holiday memory? Close your eyes a moment and find one in that vast wondrous catalog of pleasant experiences you hold in your brain.

In that memory, were you alone, with a close relation, a stranger? Is your recollection illuminated by candles, a wood fire, lamplight, or glowing bulbs?  Were the scents surrounding you familiar or exotic? Were the sounds soothing or happily chaotic?

Thinking again about that lovely memory, what made it stand out from all the other hoopla of holiday? Was it unexpected warmth? Surprising touch? Out of the blue kindness? Striking good will? An astonishing turnaround of circumstances?

The chance to surprise someone else? A close connection to another person or a moment to yourself?

Is that memory solid in your mind? Now let it go. Because it is not coming back. Seriously. We can’t recreate that experience, try as we might. And oh my, do we try, year after year, season after season. We try to perfectly recreate and relive the memories of years past. An impossibility. Yet, we throw money, decorations, exhaustive energy and loads of food at each holiday in the hopes of recapturing the unattainable.

Then we miss what is here, now. We don’t see the moments right in front of us. There is joy around, but we are all too debilitated and distracted to notice.

The unexpected is memorable because it is exactly that: unexpected. The surprise snowfall. The impetuous kiss. The stunningly smooth dollop of cookie batter. The liberating laughter of camaraderie.

We can’t create the unexpected moment. We can only get out of its way and let it happen.  Perfectionism strangles the unexpected. It allows nothing out of the ordinary, nothing spontaneous or unscheduled to happen. The magical gets planned away.

Any serious change in our health can deal us a startling and unexpected blow.  It may be the main reason we anxiously over plan: we simply want to prevent the pain.

Yet, strangely, it is the experiences we didn’t bargain on, painful or delightful, that often deepen us most. Allow us to find out what we are made of.

If we don’t fully acknowledge the changes in our lives, in ourselves, we continue to plan the same perfect holiday feasts, festivities, decorations, and gift giving, enjoyed in prior years.  Without grieving the loss of health, strength, stamina, identity, or financial stability, we’ll fiercely forge ahead into exhaustion, frustration and disappointment. Family and friends in their own tempered denial follow in kind. Eventually, though, when the shock is fully absorbed, when the obstacles are acknowledged, mourned and accepted, we can adapt another perspective, view the holiday from a different angle. The new angle helps narrow our vision to what is most significant and meaningful.

As with all grief, when one really allows what the unexpected brings, accepts that the holidays will look different from previous ones, but still contain their own magic, new possibilities emerge. With recognition of the unexpected comes realistic planning, scaling down, a joining of forces, delegating and pacing so that cookies can be leisurely baked, meals can be created together, and naps can be had, setting the stage for the joyous unexpected moments to appear.

*Peggy Walsh, M.S.- Is a psychotherapist in private practice in Bala Cynwyd, PA. She specializes in the areas of substance abuse and eating disorders but also sees a number of folks living with MS. She is grateful for the way her patients enrich her life with their interest in seeking understanding and depth in their own lives.

Hi Friends,

Thank you for all you do! I’d just like to take a moment to tell you about (the greatest mobile phone app ever!!), MSAA’s My MS Manager. In the video below, I talk about how vital My MS Manager has become in my daily battle living with MS. For me it means that I can live with my MS. Thank you for all your generous donations that help make free programs – like My MS Manager – happen, and this Holiday Season please help us make way for other vital programs that so many of us rely on. You rock!!

Love,

Anna