MS Education

Humor is the great thing, the saving thing.  The minute it crops up, all our irritation and resentments slip away, and a sunny spirit takes their place.  ~Mark Twain~ 

April is upon us. Winter is waning, spring is coming. It is time to shed the pallor and have some fun. Play this little game. Good for the brain and good for the soul!

Below are four (4) questions and a bonus question. You have to answer them instantly. You can't take your time, answer all of them immediately.
Lets exercise those brains.

Rosalind Kalb, Ph.D., Clinical Psychologist, Vice President of the Professional Resource Center of the National MS Society and a member of our Can Do Multiple Sclerosis Program Staff has coined the phrase “MS Free Zone.” What she is referring to are areas of your life where MS can’t touch you. Can Do MS and the National MS Socitey are collaborating on a series of teleconference courses called Jumpstart Your Relationship: Reclaim your Well-Being for couples. In one of our recent classes, we asked the group to come up with their MS Free Zones. While some found this to be easy for them, some others struggled.

Spring has sprung and it is time to look forward to a new season of growth. Growing a garden—whether flowers or vegetables—is a wonderful, relaxing and therapeutic way to get you in touch with Mother Nature.

Here are some simple suggestions for digging into this enjoyable activity.

What Is Your Motivation Personality?  Take two minutes to complete the quiz.

If you feel a bit down in the dumps this time of the year, you have lots of company.  By March it can feel like spring will never come.  For most of us, seeing the sun and the first few buds are enough to perk up our mood.  While you’re waiting it helps to engage in activities that can lift you out of the doldrums.  You could call a friend who has a “glass half full” attitude toward life, watch a movie that always gets you laughing, or do that ten minutes of exercise you’ve been putting off. 

We often talk about the value of exercise for your health and well-being.  As it turns out, exercise is  valuable for your brain as well.  Exercise can promote production of nerve growth factors in your brain that can help with lessening the decline in cognitive function found in MS.  Physical exercise can help people with cognitive problems compensate for those problems more easily, as lower levels of exercise may cause some to struggle more.

Every year when I open the first page of my new calendar, I feel excited about the things that will fill my calendar over the next year.  While New Years' resolutions never work for me, I do make sure the things that need to be done for my health are planned in advance.  I would recommend you do the same so that at the end of the year you achieve your health and wellness goals.

While there may be other specific health recommendations that apply to you, the following list applies to all of us.  Read the list and fit it into your empty calendar and busy life.

As the roving reporter for Can Do MS at the American Academy of Neurology Meeting in Toronto, I could not help but notice how large and spacious the Convention Center of Toronto is.  Anyone attending the meeting had to lose 5 pounds simply by walking between the sessions!  Around 10,000 neurologists from all over the world attended.   The Europeans (thanks to Iceland volcanoes) had an extra long visit. 

The meeting drew the interest of the attendees to multiple sclerosis with the sessions requiring the largest rooms in the convention center.  There were not a lot of ground breaking accomplishments announced.  We are in a phase where research studies which are important involving many new agents are in progress and not ready for further analysis.  Some are working their way to the FDA and others are not that far along but none are ready for “prime time” as yet. 

Many of you have heard of spirituality or have experienced spirituality.  Even if you have heard of it, you may wonder what it really means or how you practice spirituality.   Consider the following definition developed at the National Consensus Conference and published in the Journal of Palliative Medicine, October, 2009:

“Spirituality is the aspect of humanity that refers to the way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature, and to the significant or sacred”.

Being diagnosed with MS or being told your loved one is diagnosed is like being told a secret. You can keep the information to yourself or share it with everyone you meet. Neither of these are good long-term solutions to help you live a quality life. You’ll need time to decide who you want to tell, who you don’t want to tell and how much information you want to share with people.

Everyone approaches this in his or her way and time frame. Sharing your diagnosis or your loved one’s diagnosis with close family members and friends is often the first step to learning how to talk about MS. Family members and friends will hopefully response with love and support.

Valentine's Day was less than two weeks ago, but seems like a distant memory.  It's a holiday that conjures up thoughts of romance, flowers, candy and kisses. On February 14, many people make time for each other and overtly show their caring. On February 15, however, it is business as usual. Somehow, continuing that spark gets lost in the day to day activities. While everyday doesn't have to be a holiday to celebrate caring, everyday should be a day to acknowledge caring.

Change can be hard. Every one of us has trouble with it. New Year’s resolutions are a perfect example. Whether you made a plan before the New Year and never got started, or you started off great and didn’t follow through, goals are often not accomplished because they are too big, too vague or too complicated. Make yours attainable, simple and small.

What does your snacking behavior look like? Are you a vending-machine junkie? Does your co-worker bring in tempting sweets made especially for you? Does your snacking generate a guilty feeling?

Evaluate your snacking behavior by asking yourself these questions:
• Why do you snack? Is it because you are lonely, tired, bored, stressed or too busy to stop for a meal?
• What kind of snacks do you eat?
• How do your snacks affect you afterwards?

What is the most important part of the upcoming holidays to you?  While some “love it all”, few of us can “do it all”. 

For people with MS, doing less but enjoying it more might be a new wellness goal.  We often repeat activities year after year because they are a tradition but are they always the highlights of your enjoyment?  This year might be a good time to take inventory of all those things you do that make you so busy.  You might want to talk with your family and find out what their favorite parts of the season are. 

Everyone sets goals in their lives. Goals are set for many reasons and usually with noble intentions. The New Year is a time when many people set ‘resolutions’ or goals for the coming year. Often these ‘resolutions’ are broken before the beginning of February. The main reason for ‘falling off the wagon’ is that most people do not set goals that are either specific, measurable, achievable, relevant or time based or SMART goals. These are particular important parameters when setting lifestyle goals (i.e. exercise, nutrition, recreation, etc.). However, they are also true when setting other goals (i.e. financial, medications, etc.).

Summertime sometimes makes living a challenge. Many of us live by our routines that often take a hiatus in the summer months. Others find summer more difficult due to the heat so we spend far too much time indoors in our homes to escape the summer’s heat. This, however, is a great time of year to try new things or ways to do the old things.

February is the month to show someone you love them.  We see ads for flowers, chocolates, sleepwear and dinners for two.  While it is cheerful and colorful and fun, one would hope that sharing intimacy with the ones you love and care about is not a one day affair.  Intimacy is that deep personal attachment we form with important people in our lives.  Intimacy occurs as a two-way street.  We receive it and give it back.  We are intimate with our family, friends, pets, long-term romantic relationships and spousal relationships.  Intimacy does not occur automatically.  It is something we need to develop and nurture.

Many of us face the challenge of maintaining balance in our lives.  One of those challenges is being able to maintain motivation for your exercise program.  With our busy lives, many times it is difficult to ‘find motivation’ for exercise.  However, if you approach your exercise in a ‘mindful way’ you can be successful in maintaining your motivation during the holiday season.  These strategies can also be applied to those who are starting an exercise program and have found difficulty ‘getting started’.

Now that summer is here, most of us want to spend more time outside; in our gardens, doing activities, picnicking, and sitting on our decks and porches.  The problem comes when our skin is exposed to too much sunshine.  Sunburns are uncomfortable, but short lived.  The damage, however, is life long and significantly increases our risk for skin cancer and other problems such as wrinkling, loss of skin elasticity and drying of the skin.  In addition, damage occurring in childhood, remains with us forever.

It is summertime and many of you have more time for travel and exploration.  When you face physical limitations, traveling can seem like an insurmountable task.  You think about “how do I get about if my walking is unsteady?”   “How do I manage my bladder problems?”  “How do I find an accessible hotel or cruise ship?”  “How do I manage my fatigue?”  “How can I not be a drag to the rest of the group?”  “Can I travel with my scooter or wheelchair?”  “What if I have an exacerbation while I am away?”  “Can I travel with my injections?”

The vast majority of individuals who participate in therapeutic riding rehabilitation programs have shown significant positive outcomes. Regardless of the condition one may be dealing with, numerous research studies have clearly shown functional improvements in people who partake in this activity.

The fall season is a good thing because the cooler temperatures makes it easier for people to be active.  Falling down is not a good thing.  There is growing information about falls in the general population, as well as with people living with MS or other conditions, that put them at risk.

In the general population, a third of adults more than 40 years old have some form of vestibular dysfunction (problems with balance) but are not aware of it.  They are three times more likely to fall than those without balance problems.  People who are symptomatic (dizzy) are 12 times more likely to fall according to a recent study at Johns Hopkins School of Medicine in Baltimore.

As recently as twenty years ago, people with multiple sclerosis (MS) were advised to avoid physical activity/exercise because it could increase symptoms or possibly even increase disease activity.  Today it is well accepted that exercise is beneficial in maintaining or increasing one’s health, decreasing secondary complications and improving psychological well-being.  Some of the newest areas of research are around the anti-inflammatory and potential neuroprotective factors of exercise.

Do you ever turn down offers of outings or social gatherings because you will get too hot? Do you stay indoors when you would rather be outside? Do you ever feel like you might just melt?
 
As the summer season of hot temperatures approaches, it’s important to know that heat can be managed to maintain a high level of activity busy social calendar this summer. There are several options to manage overheating, ranging from cooling vests and scarves to misting sprays and cool clothing. It’s also important to understand why staying cool is important to your health, and energy and activity level.

With less daylight and colder temperatures it can be a challenge to stay active and maintain your fitness in the winter.  By understanding your symptoms and using some creativity, you can have fun and maintain your fitness goals during the winter.

With Atkins, LA Weight Loss, Dr. Phil, South Beach and 35 billion dollars donated to weight loss routines, why are Americans getting heavier? In 2000, the prevalence of obesity in US adults was 19.8 percent, which reflects a 61 percent increase over the previous 10 years. One in three Americans have a body weight that is 20 percent greater than recommended.

Strength is defined as the quality of being strong or powerful as it relates to muscular activity.  Muscle strength is needed to perform daily activities.  Weakness can decrease function.  People with MS often report weakness or lack of strength as a problem.  Strength can be affected by fatigue, spasticity and limitations in range of motion.  Strength training is designed to improve muscle power, bone strength (decrease the risk of osteoporosis), physical capacity for daily activities and prevent injury.  Additional benefits for people with MS may be increased endurance (delaying the onset of muscle fatigue), increased strength which can help with posture, balance and movement.  The primary goal of strength training for people with MS is to improve strength and endurance due to deconditioning.

Most of us enjoy the warm weather months; the longer days, lots of sunshine, and time enjoying the great outdoors.  For some individuals living with MS, however, summertime heat can be tough and cause their MS symptoms to be temporarily worse.  So what is really going on? 

It seems you can’t pick up a publication these days without reading about how many of us seem to have low levels of Vitamin D.  It never seemed to be a problem before; why is it now? 

Stretching has many benefits for all people.  It is an activity which we can all participate in to one degree or another.  Some of the benefits of stretching include:

It seems to be all too common to take on too much during this season.  Some of that can be managed by choosing your activities wisely.  Use the following tips to shave off some energy expenditure.

With summer comes Farmer’s Markets in most areas of the world, displaying a veritable cornucopia of tasty and healthy treats for you to eat.  Try to find the markets in your community and visit the one that works best for your schedule or location.  Food that is grown locally is usually picked fresh and ripe.  It also isn’t shipped far, so the cost is less.  Eating locally is “green” for our environment.  Many farmers grow organic fruits and vegetables.  Look for those, if possible. 

Loss of balance can be frustrating. It is most commonly seen with activities such as walking, climbing stairs or transfers. It can also be a problem with sitting or standing.

Balance problems can result directly from plaques in the cerebellum, the balance and coordination center. It can also result from other impairments commonly seen with multiple sclerosis, such as visual disturbances, loss of sensation, spasticity or weakness. 

As recently as twenty years ago, people with multiple sclerosis (MS) were advised to avoid physical activity/exercise because it could increase symptoms or possibly even increase disease activity.  Today it is well accepted that exercise is beneficial in maintaining or increasing one’s health, decreasing secondary complications and improving psychological well-being.  There is recent evidence that exercise may have some neuroprotective and anti-inflammatory effects for people with MS, but more research needs to be done in this area.

Wellness is a term that has gained increasing popularity in recent years. Wellness generally focuses on physical, psychological and spiritual aspects of one’s life. Wellness is a term described by Ardell in 1977 as “a conscious and deliberate approach to an advanced state of physical and psychological/spiritual health”. The key points in this definition include the facts that it is ‘conscious and deliberate’ and that it is an ‘advanced state’. Traditional medicine generally seeks to avoid or minimize signs, symptoms or disability. This is an important approach, particularly when dealing with a chronic condition such as MS. It is important to treat symptoms such as spasticity, fatigue and bladder dysfunction through medications and non-medication interventions. In addition, it is important to take advantage of disease modifying agents which reduced or slow disability. However, it is only part of the approach that is necessary.

Emerging therapies is a topic that is of interest to anyone involved in the management of multiple sclerosis.  Whether you are a person with MS or a practitioner you cannot help but get caught up in the fever of all the new treatments being talked about.  We are in the era of exploding knowledge and have been in that era for the past twenty five years.  In all the hoopla of “newness” we sometimes forget how far we have come.  The first edition of my book, “Managing the Symptoms of Multiple Sclerosis” was relatively small and did not include any disease modifying treatments because there were none.  Today we have seven treatments approved by the FDA that all have the potential of changing the long term outlook for those with MS and another right around the corner which will be the first orally approved treatment.  Along with that we now have the first treatment to improve walking skills for those impaired.  That is the first symptom type drug approved specifically for MS (Ampyra-dalfampridine).

CHOOSING AN ASSISTIVE DEVICE: HOW, WHAT, WHEN & WHERE??

There has been a recent focus on assistive devices (specifically walking aides).  Choosing an assistive device can be a very difficult decision.  What is the best way to make a decision on an assistive device?

Managing a hectic schedule can be a very daunting task.  As our lives get busier we have to take into consideration many more factors.  Organization and time management become essential to ‘getting everything done’.  When MS is added to the picture, it creates even more havoc.  Symptoms such as fatigue, pain, spasticity and cognition can affect one’s ability to manage their day.  In addition, scheduling medications, rest periods and other “MS related activities” means there aren’t ‘enough hours in the day’ to accomplish other tasks.

We often see TV ads about bowel issues and think that these problems are common and manageable.  They are common and they are manageable, even if your MS is the cause.  Unfortunately, bowel problems are not discussed often with others, including care providers.  We’ll try to offer some reasonable suggestions that may help you.

There has been an increase in the public's awareness of functional electrical stimulation (FES) and its use in people living with MS.  FES as an ambulatory aid, has been used for many years by rehabilitation professionals. Research however, is limited. There are new devices available that provide an exciting opportunity, but also need to be approached in a thoughtful way through discussions with your treatment team.  

Spasticity is a common symptom seen in people with multiple sclerosis (MS) and can play a major role in disability.  Spasticity has important clinical manifestations including tonic increases in muscle tone with limb rigidity and/or a phasic pattern of uncontrolled spasms.  Spasticity, with or without muscular weakness, is a cause of loss of function and pain.  Secondary complications occur due to impaired mobility.  These include contractures, skin ulcerations, and infection.  An interdisciplinary approach is an effective way to manage spasticity in people with MS.

In June, the National Center for Complementary and Alternative Medicine of the National Institutes of Health launched a campaign called “Time To Talk” to encourage both patients and health care providers to discuss the use of complementary and alternative treatments (CAM). 

The concern behind the campaign is that up to 60 percent of people living with MS use some form of CAM but only one-third report it to their health care providers.  Because many forms of CAM interact with conventional treatments, the health care provider, not knowing what is being used, could make recommendations for medications that could cause harm to the patient.  Part of the problem is that patients don’t think of CAM as being relevant to a prescription therapy.  There is also a concern among patients that telling their physician may lead to criticism.  Part of the “It’s Time To Talk” campaign is to inform health care providers about their role in CAM.

In doing research for this article, my colleagues and I discovered that there are as many gadgets and gizmos as there are tasks and situations. Many of them have made their way into the main stream and are available at local stores or via online shopping.  Here’s what made our top ten favorites.

Here we are in a new year and a new decade.  For some with MS, it will be facing their first year or decade with the diagnosis.  For others, this may be the second, third or fourth decade living with MS.  Anyone with MS will be reminded of it in some way during this next year.  Facing, evaluating, adjusting to and dealing with those reminders is most helpful in moving forward.