“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.

Chronic Disease Awareness Day at the Capitol – Denver

Once, it was simply called MS Day at the Capitol but in the last couple of years, it has expanded to encompass 34 volunteer health organizations that cover a wide variety of diseases and re-titled, “Chronic Disease Awareness Day at the Capitol.”

93-coloradostatecapitolbuilding

From the Chronic Disease Collaborative (CCC) website:

Thursday, March 9, 2017 @ 7:30 A.M.

What: Chronic Disease Awareness Day: Celebrating Milestones

When: Thursday, March 9th. Registration begins at 7:30 A.M.  Program begins at 8:00 A.M.

Where:  We begin the morning with registration and breakfast at The First Baptist Church, 1373 Grant St, Denver, CO 80203 for brief advocacy training and an opportunity to develop your story and your talking points.

We will proceed across the street to the State Capitol, 1410 Grant St, Denver, CO 80203 to meet our state legislators. Afterward, join us for a box lunch and brief presentation in the Old Supreme Court Chambers.

Chronic Disease Awareness Day helps educate our legislators about Chronic Diseases and healthcare issues in Colorado. This is your opportunity to share your stories and show your support for those living with Chronic Diseases.

Register HERE

Family and friends are always welcome.

We hope to see you there!

“My Dad Died From MS”

TurnbuckleNow-and-then we hear that someone “died from MS.”  I recently heard it from a woman with whom I was talking on a manufacturer’s product hot-line.  It was just chit-chat and of course, I did not challenge her statement but realize it is pervasive.

Hearing people do not die from MS is a relief but it understandably tends to downplay the seriousness of the disease.

Although it is a relief to know the truth about it NOT causing death, the impact is, in fact, unimaginably negative.  The vast majority of people have no idea what MS is and does to a person.  Too often, those who know it does not cause death believe it is “easily manageable” and curable.  The answers are “sometimes” and “no.”

Few realize its potential for debilitating cognitive and physical outcomes.  It is equally important to understand MS can have an impact that ranges from profound to hardly any impact at all.  Not everyone with MS suffers from a disabling effect.  However, MS generally DOES impact quality of life.

I “think” no doctor ever tells a patient they could die from MS.  Conversely they do not imply it could not cause a complication from which they could die.  [See “MS Connection” blog entry Death from Complications.]

Overall, the perception of MS falls into the realm of “well, you look good!”  Appearances can be deceiving.

Yes, MS often changes what we can and cannot do but “all is not lost.”  It is incumbent on us to exploit the things we CAN DO and not limit ourselves unnecessarily.  Case-in-point are the possibilities presented by Can Do MS (formerly the Jimmy Huega Center for Multiple Sclerosis.)  Its stated purpose: “promoting the culture and belief that everyone living with MS has the power to live full lives.”

Hard to Swallow

The following is NOT a recommendation to “heal thyself” and is written as an imagined correspondence from one person with MS to another with MS.  It is the meshing of real experience with “what could be or have been:”


Dear Jerry,

Wow.  Your swallowing issues sound similar to mine and seem haphazard without an obvious trigger.  Interesting.

My swallowing problem can be excruciating and take me to my knees.  Sometimes, swallowing is absolutely normal.  Sometimes, swallowing makes me believe it is about to become an excruciating experience but nothing happens beyond that initial forewarning sensation.  It annoys me that quite often, two months can go by without even a hint of a swallowing problem. Still, it can happen more than once in a day! Frustratingly, it can crop up when I am eating, taking pills, simply drinking water, or (although very rare) even from the normal function of swallowing saliva!  It is neither consistent nor predictable.

Seven years ago, after briefly reading my email, I had gone to the kitchen and taken one of my OTC supplements (pill) but had difficulty swallowing it: “Difficulty” as in racking pain in the area between my sternum and neck.  The pill would just not go down.  The pain was so agonizing that I dropped to my knees, bent forward over the arm of the couch, and broke into an intense cold sweat.

After a few minutes, it went away.

I felt nauseous when I was finally able to stand but fought it off without up-chucking.  Curiously, at that point my saliva began flowing like a leaky faucet so, I uncontrollably drooled and spit into the kitchen sink for a little while.  My body slowly calmed down but I was physically exhausted.

Later that evening, after lying in bed for an hour, I suddenly remembered I had forgotten to take my multivitamin!  As a consequence of my “episode,” I had completely forgotten about taking it.  I got out of bed and took it but this time I had no difficulty swallowing it.  Talk about being pleasantly surprised and relieved!

The next morning I was able to get an appointment with our Family Doctor who saw me that same day.  He found nothing when he examined me but referred me to a gastroenterologist whom I saw the next week.  After that examination, I was promptly scheduled for my first Esophagogastroduodenoscopy (EGD): a procedure used to diagnose and treat problems in the upper gastrointestinal (UGI) tract.  During the EGD, a narrowing (stricture) of the esophagus was discovered, so an esophageal dilation (throat stretching) was performed. When I recovered I was given a prescription for lansoprazole (Previcid.)  This “was indicated” due to the general relationship of Gastroesophageal Reflux Disease (GERD) to the swallowing problems they typically see.  In other words, he had no way to determine if my swallowing problem was caused by MS.  For a while afterward I did not experience obvious swallowing issues, however it was not long before these problems returned.  Within a few months the gastroenterologist determined I should have another EGD and “throat stretching,” so I dutifully subjected myself to it once more. Again, there were no identifiable changes in my symptoms.

Place settingI found it extremely irritating that from the very beginning I had vehemently protested the diagnosis of GERD.  For crying out loud, I was known for having a cast iron stomach!  I had never experienced acid reflux or heart burn and on several occasions had been known to actually eat ice cream while drinking a beer without consequence.  This was all to no avail: the gastroenterologists kept insisting I probably had “Silent GERD” so I just was not realizing that damage was probably occurring.

In spite of my protests, I followed the doctors’ counsel and treatments. After more than a year of no impact the gastroenterologists capitulated to my plea and consented to allow me to stop taking the acid reflux medicine – only because there was never conclusive evidence of GERD.

There has never been a doubt in my mind about the relationship of my swallowing problem to multiple sclerosis.  It seems to me that too many of the medical professionals I have seen are obsessed with disproving the relationship of MS to many of the symptoms I exhibit.  Why is it I too often I find myself with no explanation of my symptoms and the recipient of the glib and dismissive response “you know, not everything is caused by MS?”  Well, duh!  Are they actually willing to be an obstacle when it comes to diagnosing the source?  Or am I simply being too impatient?

I should not be surprised: Once-upon-a-time the conventional wisdom was that stress did not cause MS exacerbations. It was finally proven that stress plays an undeniable role in MS exacerbations.

[See National Institutes of Health webpage www.ncbi.nlm.nih.gov/pmc/articles/PMC381319/]

I suppose in the absence of a test to establish a relationship between a health problem and MS, there is an irresistible compulsion to rule out everything else often by way of expensive, somewhat risky, and almost always fruitless and tiresome medical procedures and treatments.

It seems so trite but true: I know my body and perhaps have a better recognition of some things than the medical professionals who too often, almost rudely, indicate they do not place much value on the patient’s knowledge and awareness.  MERCIFULLY, the doctor who performed my third and most recent EGD (this year), essentially admitted that to me!  If nothing else, he demonstrated my opinion had value!  I was taken aback and enormously pleased to the point of being giddy.  I fell all over myself thanking him and telling him how much I respected his acknowledgement and appreciated his care.

At one time I thought it was reasonable to believe symptoms were easily identified as MS related or not.  Today I know better.  With so little known about multiple sclerosis, researchers, doctors, and patients are all flailing about searching for the cause and remedies.  It is undeniable that multiple sclerosis is not yet understood and probable that its many impacts will remain an enigma through our lifetimes.

It would be reasonable to presume I am depressed or incensed by all this but I am not.  However it has instilled in me the importance of being my own advocate!

Mostly, I have discovered it remains important to “keep your chin up!”  It helps you swallow.

Your friend,

MSMSMS

 

Additional related information:

The Acknowledgement of Stress

Are You a Doctor?!
For too many years after I was first the Mighty Favogdiagnosed with possible (yes, possible) multiple sclerosis, I was emphatically told numerous times that stress did not cause an exacerbation.

Other than the impact stress has on our general health over time, I was led to believe stress had absolutely no impact on MS. This opinion has changed.

In the June 24, 2014, NMSS on-line publication regarding a “Joint Medical Meeting (CMSC/ACTRIMS),” is an article, Mind Over MS, by Carrie L. Sammarco and colleagues at NYU Langone Medical Center in New York. It “reported very early results from The Mindfulness in MS program, a weekly program designed to reduce stress and enhance quality of life in 10 people with MS through mindfulness-based techniques, such as body awareness, breathing, progressive relaxation, meditation, visualization, and hypnosis.”

Finally some recognition of the potential for stress to negatively impact the progression of multiple sclerosis! Is this a “duh” moment?

The Lab Rat Roared
It has been demonstrated to me over and over and over for years that some medical professionals (MPs) are bad at listening and have a tendency to view their MS patients as little more than lab rats. We who suffer the impacts of MS absolutely know our bodies better than anyone else. More often than not, we are surprisingly capable of making a correct albeit sheepish determination about a symptom’s possible cause: especially when there is a strong potential for it being caused by MS.

This is not to say we are always right, but my anecdotal evidence has proven this to be true more often than not.

Who has not heard a neurologist or other MP say something akin to “you know, not everything is caused by MS:” A not-so-subtle admonition and dismissal after you just told the MP you believe it is MS related. These are the highly educated medical “Board Certified” professionals and you are just the patient. Therefore, what a patient suggests as a cause is obviously flawed. The mocking disdain and dismissive attitude is more common than most people would like to believe. We ‘laypeople’ “are not sufficiently trained to make a credible suggestion about a possible cause of a medical concern.”

However, so little was and is known about the disease that the MPs — in what amounts to a waste of time and money — treat the pain in your big toe for some cause/malady other than MS. The next thing you know, you have gone through a couple of weeks and two hypodermic injections into your big toe to treat gout. The MP’s justification? “We have to rule out the other possibilities.” (An actual example situation.)  Could not they first rule out MS as the cause?  No.  (Refer to the 10 words in this paragraph.)

Consequently, we generally accept the therapy an MP prescribes: even when it might do absolutely nothing to relieve or eliminate the symptom. However the symptom gradually subsides. – hmmm . . . perhaps it is MS?

Just Get Out
So, back to the stress topic . . . A tenet of the Dinner table place setting70/Four70 MS Men’s Group is the belief in the need to maintain social contact. i.e. To regularly get out of the house to be with other people. Specifically, we believe that men with MS need to get and benefit from getting together with other men with MS.

Per the Betty Hardwick Center, “. . . humans are inherently social beings. Socialization, or enjoying other people’s company and maintaining a sense of connectedness to others, is an important component of stress reduction.” As a small group of men, this benefit is even more likely.

The Betty Hardwick Center article continues: “. . . quality, rather than quantity counts when it comes to interpersonal relationships. In other words, surrounding yourself with a large number of people who you don’t know very well is less effective than having 2 or 3 close confidants when it comes to successfully reducing stress.” Providing an environment of confidentiality, understanding, and frank discussion fosters the benefit.

Regularly meeting with other men with MS encourages the development of trust. Plus, a man sometimes feels more comfortable discussing some symptoms and issues with another man with MS before discussing it with a medical professional or even a member of his family. Describing a symptom to a medical professional is understandably met by a clinician’s viewpoint rather than a true understanding. Moreover, when describing a symptom to a family member or friend it is common to be met with the response “oh, I have that sometimes” when, in fact, they have never had what you are trying to describe. To complicate things, you also cannot find the right words to accurately describe the symptom!

The bottom line: meeting with other men with multiple sclerosis in a comfortable setting is of immeasurable benefit. It is a high priority stress relieving activity and should be an integral component of your healthcare.

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 . . .’

 

Get Out!

Yes, men with MS, leave your house.  Get out and about and mingle with other men with MS.  It is GOOD camaraderie and pretty darned positive for your spouse or significant other, too!

Harley Davidson bikeThere is research that postulates social isolation contributes to a condition of ongoing stress and can lead to serious health problems.

Quoting from an on-line article in My Optimum Health  “It takes effort to stay connected. Between kids and work and everything else, people are busy. Sometimes it may feel like it’s just too hard to stay in touch. But if you can find the time and energy, you may be pleasantly surprised at how fulfilling it can be. Having a few close, mutually supportive friends can be a key to staying healthy. Not only is having friends more fun, these relationships may also help you:

  • Feel supported
  • Stay mentally sharp
  • Reach your goals
  • Develop a more active lifestyle
  • Reduce stress
  • Have better health outcomes
  • Enhance your sense of well-being and happiness
  • Lengthen your lifespan”

So ignore the inclination to use the excuse you “don’t have the energy” or “its too far” or anything else: GET OUT!

No RSVP is necessary (although we appreciate it) 70four70@weplan.com
  See details on the Third Thursday Happy Hour page on this blog. Click here

This isn’t about drinking.  It’s about being with other men who know
exactly what you are talking about without feigning understanding.
You can order a water, soft drink, beer, coffee, tea or nothing!

~ Kirk P. Williams