MSAA is thrilled to announce our completely redesigned and updated website – mymsaa.org!

Mymsaa.org features new sections and enhancements, developed with the goal of providing easier access to more information, more resources, and vital tools for the entire multiple sclerosis (MS) community.

Highlights include:

• A new homepage featuring an MS news feed; social media plugins; direct links to MSAA’s award-winning magazine; The Motivator; and MSAA’s signature fundraising event, Swim for MS
• An updated About MS section featuring detailed information on treatments; symptoms; and information for the newly diagnosed
• A new section titled Manage Your MS, which highlights MSAA’s Shared Management Tools (My MS Manager™; My MS Resource Locator; and S.E.A.R.C.H.™) as well as provides information on maintaining overall wellness living with multiple sclerosis
• MSAA’s popular programs and services remain an important part of the website in a new section titled How MSAA Can Help. Such programs as Cooling and Assistive Equipment; MRI Assistance; the Lending Library; and Networking are highlighted in this section
• MSAA’s award winning publications and on-demand educational videos are still a focal point of the website and are linked throughout the site
• Enhanced donation and volunteer sections showcase new ways to contribute your time or donations to the MS community

Take time today to visit mymsaa.org!

Valentine’s Day is a great time to show others you care about them, but can also be a reminder of relationships or friendships which have been lost or times when people have let you down.

Life is seldom predictable. Even the people and relationships that we choose to surround us may evolve or change over time.

Now that Valentine’s has come and gone, it is a good time to reflect on maintaining and drawing strength from the one constant in your life — this person is your biggest advocate, your strongest supporter, someone who never leaves your side through the good or bad…it’s YOU.

When things get difficult and complicated, or when you are feeling alone, show yourself compassion, give yourself support, and be own your biggest cheerleader; be your own best friend.

By: Dr. Miriam Franco

The term mindfulness is certainly getting much use these days. Such phrases as “be mindful”, “practice mindful meditation”, and “be in the moment” are interspersed in daily conversation across various areas of life. Yet many find it hard to really understand, in plain English, just what mindfulness really means.

Mindfulness is a particular conscious state of mind that, with practice, can sharpen certain mental faculties, processes and modes of awareness. It stems originally from Vipassana, one of the oldest of Buddhist meditation practices. In this practice, there is a direct and gradual cultivation of awareness. Over time, your attention is carefully directed to an intense examination of aspects of your existence. As you learn to relax and meditate, you learn to become attentive more and more to the flow of life experience. It is, in effect, a form of sensitivity training, a type of method of exercising your awareness. It engages attentive listening, full seeing and careful observation allowing you to be more present in the moment. Take in the particular features and aspects of experience as in smell more acutely, touch more fully and really pay close attention to what you feel.The purpose of becoming more mindful in this way is to learn to really pay attention without judgment and constant distraction.

Often we think we are doing this, but just as frequently this is an illusion. In a mindful state, we cultivate a special way of seeing reality. Instead of looking at life through a constant stream of concepts and thoughts or mental objects we mistake for reality, we learn to not get so caught up in endless thinking and let reality float by unnoticed. Rather than spending time being engaged in activity and distractions, pursuing an eternal path of pleasure and security, or fleeing from pain and unpleasantness, we train ourselves to ignore the constant urge to be more comfortable. It is often ironically stated in meditational practice that real peace comes only when you stop chasing it.

This state of mind can be achieved through meditation training or relaxation and sensory meditation training (Guided Imagery). In time, we slowly become more attuned and in touch with the way we actually are. Life has a much deeper texture if we bother to reflect on it and to look in at it in this way of practice. It’s a type of self-discovery process in which you observe your own experiences while participating in them as they occur. Over time, you find yourself observing things more the way they are flowing and changing and interacting with them more fully from moment to moment. This can add a relaxed, reflective attitude towards one’s self, others and life. This special mode of perception is called mindfulness.

*Dr. Miriam Franco is a psychologist in private practice in Wayne, PA and is a certified MS specialist and a Guided Imagery specialist. She also serves on the Health Care Advisory Council of the MSAA and is a Professor of Sociology at Immaculata University.

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.

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.

There is life after MS…”

Be inspired – please send an online card featuring artwork by MS artist Chenne Richardson and spread awareness of MS and MSAA.

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.