“Pressurecising”

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.

More
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.

It is All in Your Mind

It is important, if not ironic, for people suffering from MS related cognitive issues to remain aware that not everyone has their best interests in mind. This is true for all people in general.  However, the very nature of MS probably dictates a need for some level of help from others.  Understandably worrisome but does worry combined with MS naturally lead to depression?

soccerballsAs presented by Neil Cavuto on 16 June 2014, “One out of three of us is bummed-out and do [sic] not think things will get better.” Granted, he was not speaking specifically about multiple sclerosis (even given the fact he has MS) but it certainly applies.  He was talking about all people all over the world and it naturally made me wonder about those of us with multiple sclerosis. Are we more or just as or less depressed (“bummed out”) than the general population?

According to Allison Shadday, LCSW, “Over the course of a lifetime, the prevalence of experiencing a depressive disorder may reach to nearly one in five for women, and one in eight for men – and some sources give even higher estimates.

Despite being a fairly common condition, depression is still a widely misunderstood and ‘stigmatized’ disorder . . .” [Source: Multiple Sclerosis Association of America publication “Understanding and Treating Depression in Multiple Sclerosis.”]

Depression related to a chronic condition is sadly considered normal and seemingly accepted as inevitable.

It is probable that many MS patients when asked by their neurologist if they were depressed have said, “Heck yes! I have MS! Am I depressed every minute or even most of the time? No. But I am depressed for minutes or even an entire day; you know, for short periods.”

The bigger problem is lasting depression. “Facing a chronic illness naturally leads to feelings of uncertainty, grief, sadness, anger or fear. But when these feelings continue and disrupt quality of life and day-to-day functioning, depression may be the culprit.” [Source: National Alliance on Mental Illness fact sheet “Depression and Chronic Illness.”]  This is one of the major reasons why it is important for us men with MS to get out of the house and socialize with other men: other men with MS. Men who actually know what we are going through without hearing us say much at all because they are experiencing or have experienced it.

Yes, 70/Four70 IS a support group but it, along with the Denver MS Men’s Group, is not a run-of-the-mill support group. We males do not deal with our MS as do females. That is neither positive nor negative; rather it is a reality. The male approach is hard to describe, but as one of our members succinctly put it: “No whining.”

As stated in the immediately preceding posting, “If nothing else, men do not like to show vulnerability or be perceived as weak.” But we do “want to know ‘what can be done . . .’

 

How Many People with MS Does it Take to Change a Light Bulb?

Imagine: an adult with multiple sclerosis (MS) wallowing in self-pity and worry.

It is easy to fall prey to this state of mind. It develops so quickly you might not recognize the invasion of shameless insensitivity to the needs and concerns of partners, spouses, children and/or grandchildren, siblings, and parents: Insensitive and self-absorbed but understandable. “HEY!  I’m the one with the health issue!

Who does not believe that everyone in the family would be brainbulbbetter-off adjusting life around the impacts of MS? It sounds reasonable but most often extremely difficult to accomplish.

Physiological differences between men and women can greatly influence the efficacy of a therapy. Women and men often perceive the challenges and workarounds differently.1. Men can be particularly obstinate when it comes to their affliction. Can it be that women do not have this resistance?

A man with multiple sclerosis might be willing to talk about the available programs for financial and physical assistance but avoids talking about the emotional toll.

Is there also a hidden impact influenced by the fact there are two to three times more women with MS than men? [NMSS]

For many men, exposing their emotions is too touchy-feely. Instead, men pursue (make it more important to know) the most appropriate medication(s), physical aid products, treatments and services available to help manage their MS. Anyone spending any time at all around men who have MS would not be surprised to hear a man with MS say he really does not need to be in a support group and “the one time [he] went, it was just a bunch of whining:” Something distasteful to most people but particularly repulsive to men.

Vanquishing multiple sclerosis is a campaign with two fronts:

  1. Advancing MS research.
    Most people with MS want to know about the current FDA approved therapies: What are the positive and negative impacts? We also want to know about the cutting edge therapies and natural/organic based (homeopathic) therapies.
  2. Effectively helping individuals handle the daily struggles of MS.
    We want a cure but in the meantime, we want to cope with MS the best we can.

The mission of MS non-profits is generally focused on research and addressing the challenges of living with MS:

  • “. . . by funding cutting-edge research, driving change through advocacy, facilitating professional education, and providing programs and services that help people with MS and their families move their lives forward.” [NMSS]
  • “. . . to improve the lives of those who live with multiple sclerosis and their families through care, education, support, and research.” [RMMS Center]

Really? I need permission?

The word “empowerment” is mercifully absent from these mission statements but pervasive in the mission statements and TV commercials of some non-profits.

To many, if not most, males, empowerment implies weakness. It is the equivalent of being given “permission.” If power needs to be given, it can be taken away. I do not know many — okay, any — men who believe they need to wait to be given power and most would go into battle with anyone who tries to take away power!

If nothing else, men do not like to show vulnerability or be perceived as weak.

Nonetheless and to the point; male or female, most people with MS impatiently want to know “what can be done for me today? How do I change the light bulb in my ceiling fixture?!

© 2014 Kirk P. Williams


¹ Mark Kastleman (The Difference Between the Male and Female Brain, www.netnanny.com/learn_center/article/165/)
Also see YouTube “Pam Cook, MS Activist: The Partnership of Marriage” [Click here]

“See What You Have Done”

A current ad on late night TV evoked in me a torrent of mangled thoughts.  It promotes a compilation of Elvis Presley singing music including the song “C.C. Rider.

Promotional photograph of Elvis Presley, taken...I was immediately transported back to my teenage days when I played in a rock band and particularly the one weekend we were the back-up band for Wayne Cochran & The C. C. Riders at the long defunct “Bud & Swede’s” in Watseka, IL.

My mind’s eye flitted around erratically from thoughts about Elvis and his mess of a life to suddenly and disconnectedly jumping to the mish mosh havoc multiple sclerosis inflicts on a person.  Yes, an odd assemblage of happenings, but a memory never dies: Memories become altered, sometimes reassembled, but generally hang around waiting for the firing of an obscure neuron to stimulate it to life.

MessThe lyric “see what you have done” (from C. C. Rider) stuck in my mind.  I could not shakefree of it.  I began to think about how the vast majority of people over 40 have done a lot, yet how much was of substance?  The maxim “Quantity does not equal quality” is spot-on.

Some wonderful opportunities slip by but most of us are still able to grab hold of at least a few great experiences from countless new encounters.  The question becomes; who defines what is standard and normal versus uncommon and exceptional?  That question indignantly whacked me on the back of my head a number of years ago when reading my ENT doctor’s written report regarding his findings.  He had examined me to determine if my “dizziness” like condition might not be neurological.  The report included the word “unremarkable.”  What?!  So, unremarkable is another word for expected?  I was insulted although no insult was implied or intended.  I suppose we all think we are outstanding but it is not good to be too “interesting” when it comes to our health.  However, the use of that word – even as part of the medical terminology – is disconcerting.

Being troubled and almost immediately after the first few seconds of the Elvis ad, I impatiently changed stations and watched a snippet about the late Annette Funicello (who had MS) and the Mickey Mouse Club.  hmmmmm  Are we duped into believing we can change what is to be?  Can we instantaneously jump from being run-of-the-mill to astonishingly outstanding?  Or, would it just appear to be instantaneous to others?

I am convinced the Mouseketeers’ lives were the most marvelous any kid could imagine. At least those of us who watched them thought it.  Conversely, a lot kids believe their lives are/were dull and going nowhere.  Reviewing and assessing our lives seems to be compulsory as teenagers and again when we begin to cross into our “senior” years as a “mid-life crisis.”

Perhaps we should simply take comfort in what Willie Robertson on Duck Dynasty once said  “The key is not to get discouraged in all the wrong turns you make.”  And as Jase, Willie’s brother, said about life’s twists and turns, “All in all . . . awesome!

The Value of Patience

also published on the blog denvermensgroup.com.

Over the last few months I have too often heard a man with MS who is still working say “I am afraid to go on disability: I don’t know what I would do with myself.”

Interesting comment since the reasons for going on long term disability are broad and encompass cognitive and physical functioning but above all, safety.  Attempting to use a footstool to reach the top shelf of a kitchen cabinet is generally unwise if not impossible.  Our big desire seems to be to have “value.”

BoredomBoredom is definitely an issue to resolve and cannot be simply shoved aside, but so many of us are less multidimensional than we believe.

Reading a book (hard-copy) night be an unpleasant tactile experience due to heightened sensitivity and even the ability to grasp and hold a book.  Focusing the eyes can get in the way while focusing the mind can be even more frustrating.

From a blog posting in 2009 “Jughead” said “. . . For me it [boredom] usually stems from not being able to do what I want, and though similar to a tantrum, this differs because it is more about disappointment. I can’t come up with what my niche should be, one I’ve been trying to figure it out since childhood.

I can no longer use a hammer or a table saw.  I am unable to think clearly enough to write (not handwriting but typing) anything comprehensive AND if I finally do, it takes hours if not days to complete.

The key is examining what you CAN do and re-routing your expectations.  Have patience.  Taking small steps can also provide immediate gratification. Try it rather than expecting to attain lofty goals only to fail and result in giving up.

The value of patience has become clearer to me now that I have multiple sclerosis and I have learned I must redirect rather than despair over loss.

I cringe at the concept of a need to be GIVEN empowerment since we are all born with the power. We — yes “we” — are the only ones who can use the power. Read Top 5 Words to Delete from Your Vocabulary in Jeff Moore’s blog “everydaypowerblog.com.”

Patience is the companion of wisdom.”  Roman Catholic, Saint Augustine.

The Wild Bore

PeachI loved it.  I was busier than a — well, you fill in the blank — before MS took me out of the work environment.  I had no problem keeping busy and was certainly busier than I needed.

Multi-tasking?  Heck, yes, bring it on!  I thrived on juggling as many tasks at the same time as I could.  An “A” personality?  Who knows?  I always thought of myself as lazy, but I fit all the classic “A” personality type definitions except being rigidly organized.  I was/am definitely sensitive, truthful, impatient, and still take on more than I can actually handle.

Early in my MS life, I would go to work every day all week and even put in too much overtime.  But on the weekends I would be so exhausted, I slept a LOT.  In summer I was nonexistent on the weekends.  MS took its toll.

But that was then. The cognitive challenge has negatively and frustratingly impacted me.  It remains a symptom that has never improved.  In fact, it seems to get worse. Now, I find this MS restriction (along with the many others) so impactful that it can and usually does take me a day or more to write a cohesive and accurate email longer than a sentence or two.  Of course, some people will say I have always been too wordy!   Regardless, now I am forced to miserly budget my time and take shifts on the computer which drags out the process. Incredibly hard on an impatient person.

But bored?  What is that?  I always thought I would have no problem retiring. There were so many things that interested me, I would never be able to get to them all.  A good thing, too.  MS took away the ability to do some of those things from playing the piano to building a shed suitable for use as a guest house.  You know: the CORE things to me.

Since my MS diagnosis, my goal has been to keep my mind active and engaged, yet that is a theater where MS wreaked havoc and caused a lot of trouble.

Although I never enjoyed reading, I also never figured out why.  Even worse, now I struggle to read because MS makes focusing my eyes aggravating, if not a herculean feat, and I mentally fatigue easily.  Even without heat!  Perhaps ironically, I have always valued reading and am an insufferable grammar snob juxtaposed with a sometimes-hypocrite.

It fascinates me that well known male public figures from Montel Williams to Neil Cavuto (anchor on Fox News Channel) to David Osmond to Jack Osbourne (the son of Ozzie), all have MS and so far are able to keep active.  They do not often if ever use visibly obvious assistive devices such as a wheelchair or cane.  But what cognitive issues do these men have?

I propose that as a group, men internalize things more readily than women.  We do not want to discuss our MS and certainly do not want to talk about our feelings!  What?!.  Help me?!  Get away from me.

So what does a man with multiple sclerosis do?  I know what I do, but how do YOU deal with staving off boredom?