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.

*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.

To mark today’s unique date of 12-12-12, we are proposing a unique one-day-only endeavor!

MSAA is looking for your help in spreading awareness and raising much-needed funds for the MS community by asking you and your family, friends, neighbors, and co-workers to make a gift of $12. These modest donations, when added up, will give a significant boost to MSAA’s vital programs and services.

How do you get involved? It’s simple!

• 12 dollars: Make a gift of $12.
• 12 people: Reach out to your family, friends, neighbors, and co-workers, letting them know how MS has affected you or someone close to you and ask them to give just $12.
• 12 followers: Ask 12 people to follow MSAA on Twitter or “like” MSAA on Facebook to help spread awareness of multiple sclerosis.

Mark today’s unique date by helping to raise awareness and funding for essential programs and services supporting the MS community! Please take the 12-12-12 Challenge. Time is running out today!

The holiday season frequently has people reflecting on and discussing what their family does uniquely, or times that are special to them. Many of these things result from tradition. Traditions are generally thought of as customs or beliefs that are handed down from one generation to the next. Holiday traditions would therefore typically be something which is done to honor or respect customs from your family in the past, or something instituted and repeated each holiday season over a long period of time.

These could be eccentric things, like everyone taking a trip somewhere they have never been during a particular week each year, or simple things like all the cousins of a generation taking out one day from their busy lives and going to grandma’s house to decorate cookies. They could include volunteering for a special cause dear to your heart, or hold specific importance within your family history or spiritual beliefs.

Many people may come from families where they have no specific traditions and then as adults they have the opportunity to create their own traditions. If we look at the reasons traditions are built, it usually boils down to respecting and honoring the past and/or evoking emotions: excitement, closeness or togetherness, thoughtfulness and thankfulness, etc.

So whether you are lighting a candle for past generations or hanging a new ornament on your tree, think about what those traditions, old and new, mean to you and your family.

Nobody ever really wants to think about what needs we may have in the future, but there comes a time when each of us should consider what future plans we would like to make if challenging circumstances do arise. Making plans for the future is not exclusive for persons with disabilities or for older individuals, it applies to everyone.

There are many components that go into long term care or advanced planning. Generally, these plans may include whether to purchase long term care insurance as well as evaluate various living environments and arrangements if one is not able to continue to live independently. Additionally, this process may also include some of the harder to discuss and more heavily laden issues such as creating a will (for what we would like to have happen to our belongings and assets) and also a “living will” (a plan to try establish our medical and treatment wishes if at some point we are unable to make those determinations ourselves).

These are tough things to mull over and possibly even harder to discuss with loved ones and make “official” in writing. But, the question we often forget to consider is what happens if we don’t plan for these things…who will make these challenging and difficult decisions?

The truth is that if we do not make these decisions then someone else has to make them for us.  Friends and family members may have conflicting ideas about the best course of action or decision makers may feel guilty if they are not sure if they are carrying out our wishes. The best gift you can offer to help make difficult situations a little easier is to think about a plan and then follow the process to make those wishes legal and known to all the important parties.

Yet, it is difficult to discuss these needs, but we don’t have a guidebook of life to know when the time will come when these decisions will be necessary.  In that respect it becomes important to examine these issues now when we are able to make those decisions for ourselves and maintain control over our wishes.

On Sunday, November 18 at Seton Hall University in South Orange, NJ, MSAA and Swim for MS Ambassador and US Olympic Swimmer Missy Franklin worked on a series of public service announcements that will soon air across the country about the Swim for MS program. Below are a few pictures from the photo shoot. Don’t forget to dive into action with the Swim for MS program! Learn more by visiting SwimforMS.org!