How often have you heard something similar to this? “It is important to exercise.  It doesn’t matter what you do because any exercising helps.”  Who could argue?

hand weight

At every visit, Physicians try to compel me to exercise by asking if I am doing any exercising.  I also have the self-imposed pressure of societal expectations about exercising:  Heck, I live in Colorado!  Coloradans are big on outdoor activities and a focus on healthy lifestyles. However, the pressure to exercise (pressurecising) has little effect on me, other than I feel guilty about not exercising.  I am just not motivated.

People who are not self-motivated to exercise when they are healthy, will probably find it incredibly difficult when poor health gets in the way.

In my “healthy” years, before the diagnosis of multiple sclerosis (MS), the only way I consistently exercised was to arrange with someone to go bicycle riding or meet to play racquetball.  That worked.  I actually showed-up because I had made a commitment to the other person who relied on me to be there and I enjoyed it.  The few times I exercised by myself never lasted very long.  I simply do not enjoy it.

Now that I have MS, I discovered a new stumbling block: exercising with strangers.  Well-meaning trainers and strangers exercising with me tried to urge me on.  Telling them I have MS was as effective as describing a color to a person blind from birth.  Understandably, they did not comprehend and for heaven’s sake, if I tried to elaborate, it would have been an exercise-in-futility.

I do not want to draw attention to myself but desperately want others to understand MS just a little bit.

Unfortunately, most people are misinformed.  They might try to relate to me by telling about “an Aunt who died from MS.”  Far too many people mistakenly believe MS is a death sentence instead of an impairment that ranges from minor to severe physical and/or cognitive difficulties.

When well-meaning people try being cheerleaders, they don’t understand my lack of movement is not because I need encouragement or help but my muscles won’t respond and I am also trying to keep from becoming fatigued.  I might still try but if I am not careful, I risk injury.

After years of searching for the most appropriate exercise, I eventually assumed the slow and deliberate movements of Tai Chi would be perfect.  Wrong.

On two occasions, I attended a Tai Chi for Arthritis class at our community recreation center but certainly, no one else had multiple sclerosis.  Even with Tai Chi’s slow deliberate movements, my cognitive issues still caused problems in comprehending and copying the positions of the torso, arms, hands, legs, and feet, then transitioning to the next position.  Although the transitions were made slowly, the instructor was going on to the next movement before I figured out the positions for the first movement.  I could not keep up and quickly became physically and mentally fatigued and stressed.

Mistake #1: I did not speak with the instructor BEFORE joining the class.
As with many people who have MS, I appear generally healthy, so he had no idea I had MS and struggle with the movements because of my impaired cognition and physical abilities.

Mistake #2:  Telling a well-meaning classmate, who was urging me on, I had MS.  Many people simply cannot relate to what MS is and does to a person.  She kept encouraging me to do things because she did not comprehend why I was not trying a movement.  Unwittingly, she only increased my frustration, stress, and embarrassment.

Focusing on the instructor’s movements allowed me to learn without making the movement.  Neither the instructor nor classmates understood that sometimes I had to just watch to learn and keep from being fatigued or falling.

Even with Tai Chi’s slow movements, my MS issues with cognition, coordination, dexterity, balance and falling were significant.  The result: I abandoned exercising.  Unwise for anyone, regardless of their health.  However, wisdom is not the province of will power.

The Negative Impact of a Sedentary Life

The “Catch-22”
Many diseases/conditions cause a need to sit or lie down either primarily or often. Multiple sclerosis is just one of the many. Frustratingly, sitting longer than ½ hour can be unbearable, too. Standing can be difficult because of balance issues.

Broken lathPer the August 19, 2014, article in Grandparents.com, The Risks of Sitting Too Much (click here), “Research shows logging long hours on the couch or behind a desk raises the risk of chronic health ills like heart disease, diabetes, and cancer, along with premature death – even among those who exercise regularly.” The article continued by citing an unnamed Australian study that purportedly found that “people who sat 11 hours or more a day had a 40 percent increased risk of dying over the next three years compared to those who sat for fewer than four hours a day.” If the intent is to frighten, that goal has been achieved!

Regardless of the accuracy of this finding, the primary dilemma for each of us with MS is what kind of exercise can I actually do?!

Some Options
A National MS Society web article on exercise (click here) asserts “in addition to being essential to general health and well-being, exercise is helpful in managing many MS symptoms.” It suggests Yoga (click here) or Adaptive Tai Chi (click here) as potential exercise programs.

Yoga may require too much physical dexterity but Adaptive Tai Chi can be accomplished sitting in a chair. However, there are a significant number of people for whom these programs are so challenging that these are impossible or dangerous to even attempt.

What about exercising in water? (Click here.) “The unique qualities of water provide exceptional benefits to people with MS. Water helps people with MS move in ways they may not be able to on land.

Check out the interview with Dr. Jeff Hebert of the Rocky Mountain MS Center at Anschutz Medical Campus. (Click here.)

Do Not Neglect
Exercise your mind. MS caused cognition and vision problems can make exercising your mind extremely difficult. If able, read. There are those who believe programs such as Lumosity are beneficial, however I found Wii Sports VERY helpful. It allows the user to use broad range of motion or slightly move the hand and wrist in order to play.

When I have the physical capacity/stamina, Wii is fantastic in its ability to help exercise and gauge eye-hand coordination and mental processing. The difference from Lumosity is that Wii Sports is fun and engaging. I cheated on many of the Lumosity exercises just to complete those and still got 50% correct. hmmmm

The Bottom Line
It is vital to keep your mind and body active to the level at which you are capable. Do something. It is amazing what is actually possible and how much better you feel physically and mentally.

This blog posting only hints at the issue and is intended to encourage the assessment of your need and ability and further explore the options: regardless of your current health.

The Challenge of Unscrambled Thinking

[This was originally posted 4 November 2013 by me on DenverMensGroup.com.]

Publishing a blog is no guarantee it will be read and a probable fruitless endeavor.  While providing a venue for the exploration and expression of thought, blogging is often an intimidating undertaking.  This simple posting took several sittings and days to create and I continue to edit it.

Don Quixote headMultiple sclerosis can cause cognitive complications with no limits that embarrassingly and unceremoniously stop a person in mid-thought.  Like standing in a field of butterflies, much of the time I have a horde of thoughts haphazardly floating around in my head.  As quickly as one is captured, it escapes.

When I begin processing a thought, another thought barges in, rudely shoving the prior thought out the door and beyond reach.  It is excruciating and I have come to appreciate the unfulfilled determination of the frustrated Don Quixote.

Altruism aside, I blog as a result of a pesky belief that if I just write things down, it will put me on a therapeutic path to retain as much cognitive capability as possible: An organized and methodical documentation of soul searching akin to the ubiquitous “sorting things out.”  An unscrambling.

One conventional therapy to battle the loss of mental capability is the use of Lumosity.  “Lumosity is based on the science of neuroplasticity, the idea that the brain can change and reorganize itself given the right kinds of challenges,” said Erica Perng, Lumosity’s head of communications for an article in “The Guardian” by Elizabeth Day, dated 20 April 2013 and titled “Online Brain-training: Does it Really work?

I use Lumosity . . . when I remember . . . but have found Wii Tennis, Bowling, and Golf to be more effective at trapping my interest.  Lumosity exercises are too frustrating and irritating to be helpful.  I get upset with it.  However I must admit, as much as I despise Lumosity’s mathematics exercise, I do like and am motivated by its word creation exercise .  (I was slow at math long before I was diagnosed with MS.)

Sudoku is not at all intriguing or enticing to me.  Yet, it is another “therapy” for exercising the mind to rebuild connections and there are those who use and enjoy Sudoku’s challenge.

For years I have “intended” to begin Tai Chi but have yet to summon enough discipline to get beyond the introductory section on the Tai Chi DVD.  With its slow movements, it seems to be a more MS-friendly exercise than Yoga since it can even be done sitting in a chair.  Yoga’s physical contortions can be painful for a generally healthy individual of moderate physical ability.  It is virtually impossible for a person with limited flexibility/mobility.  Egad!  Maintaining a position with spasticity?!  So . . .

  • How do YOU handle this too often dismissed malady of the multiple sclerosis mind?  (Say that fast three times!)
  • How do you manage the brain’s wrath and rebellion when it comes to your MS cognitive issues?
  • Would you say you have a form of Pseudo Bulbar Affect?