“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?

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.”

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 9^th. 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!

MS Elevation Conference 2016

It is time in the Rocky Mountains for a new event specifically for Men with MS.

Sponsored by the CO-WY Chapter of the National MS Society, Dave Pflueger, 2016 Men’s MS Event Chairman, is in the midst of planning just such an event along with a number of men who also have MS (multiple sclerosis) from several MS Mens groups.

With the working title, “MSElevation Conference,” the event will feature discussions of the status of MS treatments and impacts of MS specifically on men who have multiple sclerosis.

Why an event specifically for men with MS?

Men view and cope with MS differently than women: The Mars & Venus disparity.  According to the National MS Society, “MS is at least two to three times more common in women than in men, suggesting that hormones may also play a significant role in determining susceptibility to MS.  And some recent studies have suggested that the female to male ratio may be as high as three or four to one.”  [Ref Summarizing epidemiological estimates] Since women comprise the majority of people who have MS, it is understandable that few events focus on the impact of the disease on men with MS.

Scheduled for Saturday, September 10, 2016, at Coors Field, in Denver, Colorado, the keynote speaker and further details will be announced in the near future.

Pflueger personally raised substantial “seed” money to help fund this 2016 event and was also a member of the planning committee for the 2012 event.

For more information, contact the Colorado-Wyoming National Multiple Sclerosis Society by phoning (303) 698-7400 or emailing co-wyreceptionist@nmss.org

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HISTORY:
The last such event was held on September 29, 2012.  It too, was sponsored by the CO-WY Chapter of the National MS Society and planned by its Denver MS Mens Group.  Called “Kicking at the Uprights: the Male MS Challenge,” the event was held in the press room of Sports Authority Field at Mile High (home of the Denver Broncos) and attendance was at full capacity.

Renowned sports psychology consultant, Jack Llewellyn, PhD, was the 2012 event’s keynote speaker.  Llewellyn gained national acclaim as instrumental in turning around the 1991 season and career of Cy Young Award-winning pitcher, John Smoltz, of the Atlanta Braves.  Llewellyn also has MS and helps people correctly focus on the right processes to reach goals, thrive on stress, and recover quickly from adversity in order to become top performers.

Chronic Disease Awareness Day at the Capitol 2015

Early in the morning of March 5, 2015, advocates, friends, family and leaders gathered in the Old Supreme Court Chambers at the Colorado State Capitol building for “Chronic Disease Awareness Day at the Capitol.”  Featured speakers were:

1. Carrie Nolan, President of the CO-WY Chapter of the National Multiple Sclerosis Society.
2. Candace DeMatteis, Partnership to Fight Chronic Disease.
3. Dr. Adam Atherly, University of Colorado School of Public Health.
4. Lonnie and Jan McIntrosh, Colorado Chapter – Alzheimer’s Association.
5. Connie Carpenter Phinney of the Davis Phinney Foundation and an Olympic Champion.

(L to R) State Senator Linda Newell, Kirk P. Williams ~ MS Advocate, Carrie Nolan ~ NMSS Chapter President, in the Senate Chambers of the Colorado State Capitol building during Chronic Disease Awareness Day at the Capitol, 2015.

The attendees then gathered in the Senate Chambers where State Senator Linda Newell (State Senate District 26) made a tribute to Chronic Disease organizations and sufferers.

Chronic Care Collaborative member organizations:

• Alzheimer’s Association, Colorado Chapter
• American Cancer Society Cancer Action Network
• American Diabetes Association
• American Heart Association
• American Liver Foundation- Rocky Mountain Division
• American Lung Association of Colorado
• Arthritis Foundation Rocky Mountain Chapter
• Brain Injury Alliance of Colorado
• Can Do Multiple Sclerosis
• Colorado AIDS Project
• Colorado Coalition for the Medically Underserved
• Colorado Gerontological Society
• Colorado Ovarian Cancer Alliance
• Crohn’s and Colitis Foundation of America, Rocky Mountain Chapter
• Easter Seals Colorado
• Epilepsy Foundation of Colorado
• Hep C Connection
• Huntington’s Disease Society of America, Rocky Mountain Chapter
• Leukemia and Lymphoma Society, Rocky Mountain Chapter
• Lupus Foundation of Colorado
• March of Dimes, Colorado Chapter
• Mental Health America of Colorado
• Muscular Dystrophy Association
• NAMI (National Alliance on Mental Illness) Colorado
• National Hemophilia Foundation, Colorado Chapter
• National Kidney Foundation of Colorado, Montana and Wyoming
• National MS Society, Colorado-Wyoming Chapter
• Parkinson Association of the Rockies
• THRIVE: The Persons Living with HIV/AIDS Initiative of Colorado
• Rocky Mountain MS Center
• Rocky Mountain Stroke Center

Potential New Aid for MS

Associate Professor Yuichi Kurita at the Institute of Engineering at Hiroshima University explains a prototype for wearable equipment to support human motion. Credit: Image courtesy of Hiroshima University

The following device has yet to be studied in application with a person who has multiple sclerosis (MS) but upon first reading about this new product, it instantly occurred to me that it has potential for people with MS.

A prototype of “wearable equipment to support human motion,” called the Sensorimotor Enhancing Suit (SEnS) has been developed at Japan’s Hiroshima University. An article in the February 23, 2015, issue of Science Daily, reported that SEnS “enhances sensorimotor functions by reducing the muscle load of the upper limbs.”

The assistive device is “made of flexible fabrics using regular cloth and does not include any electronic devices,” thus making it inexpensive. SEnS assists human sensorimotor functions and might improve the quality of life for some people including those with impaired physical ability, elderly individuals, and even healthy people “who work under extreme conditions.”

Hopefully the SEnS — or the technology it incorporates — might prove helpful for some multiple sclerosis sufferers.

Read the full reasearch article by Hiroshima University in Science Daily.

Journal Reference: Yuichi Kurita, Jumpei Sato, Takayuki Tanaka, Minoru Shinohara, Toshio Tsuji. Unloading Muscle Activation Enhances Force Perception. 5th Augmented Human International Conference, 2015 DOI: 10.1145/2582051.2582055

Abilities Lost and Found

“To be or not to be. That is the question.”

It is the opening of Act III of William Shakespeare’s play, Hamlet. Admittedly, it is taking dubious license to reapply this to the plight of multiple sclerosis, but it would seem “nobler” to take the path toward positive thinking rather than “suffer the slings and arrows” of MS.

After being told I “might” have MS, I adopted an attitude that the less I found out about it, the less likely I was to exhibit the symptoms. In other words, reading about the symptoms might cause me to imagine in a psychosomatic way that some ache or pain was MS when I was actually relatively healthy. I subscribed to the mantra “not everything is caused by MS, you know.” I believed knowledge – in this case – was counterproductive. Although I learned some things about MS, I generally avoided reading about it: the fear of creating mock symptoms was too great.

On the other hand, if something odd (healthwise) started to manifest itself in suspicious ways, I would see my doctor to determine if it was MS or something unrelated. Interestingly, the current lack of knowledge about MS means medical professionals most often investigate and eliminate other causes before ascribing the symptom to MS.

Today, I am not so sure “ignorance is bliss” as “tis folly to be wise” ¹ when that mindset seems to be counterproductive regarding multiple sclerosis; if not most things in life.

Eventually, I had to stop working after becoming acutely impacted by MS. It was then I began voraciously learning more about the disease. I soon found I could not glean enough information to satisfy my desire to know. MS controlled me. It was time to start manipulating MS.

It saddened me that I could no longer do the work I loved. Heck, I could not work at all. However, I could keep mentally active and find a purpose in life, if I redefined myself. So, I did. It was actually not conscious other than my desire to just keep moving forward. (Ironically, MS can make even rolling over in bed difficult!)

I am uncertain of the day I starting using the tools that remained in my bag but I was definitely aggressive about it. I became a voice: an advocate; an activist for those impacted by MS.

My actions ranged from organizing and producing a conference for men with MS to simple one-on-one discussions about MS with others who had MS to actively seeking financial relief in an area not typically (or easily) recognized as a health accommodation: the Utilities’ cost of air conditioning.

Looking back, I unknowingly decided “to be.” I wanted to do all I could to keep from being the invalid. Yes: both meanings.
The attitude is healthy and all of us – MS afflicted or not – are better off using the abilities we have rather than bemoan the abilities we lost. Excuses for not doing a thing is okay but for doing nothing . . . well, that is what gave the word “excuse” such a bad reputation.

What are you doing?

¹ see Thomas Gray, “Ode on a Distant Prospect of Eton College”
http://www.thomasgray.org/cgi-bin/display.cgi?text=odec

Positive Contempt

There is “a lot of negative” about having multiple sclerosis. But is there anything positive?  Conventional wisdom says “no.” Then there is the Ron Popeil sales pitch “but wait, there’s more!”¹

Perhaps deep down, most people are inclined to admit life is scary, while on the surface they move forward and down-play the scary and not-so-pleasant facts.

Although trite, it still holds true that life offers no guarantees other than death and taxes – even for billionaires.  So, what parts of life can we manipulate to exploit a positive?

Case in point: Steve Jobs was not done living; yet “his time had come.”  Evidently, Jobs chose a risky route of alternative and natural treatment for pancreatic cancer that, sadly, did not prove effective.²   Despite his illness and up to the time of his death, he skilfully manipulated outcomes within his control through his determination to keep developing his ideas and Apple’s products.

You know the adage, “when life gives you lemons, make lemonade.”  If you have MS, you have a boat load of lemons! To make lemonade, you need sugar.  When it comes to MS, that “sugar” is finding and making use of the most effective treatment or symptom management for you.  However, to make an Arnold Palmer you also need iced tea.  In regard to MS, the “iced tea” is an attitude of and belief in hope.  A gratifying combination and a form of self-realization.

The legendary golfer, Arnold Palmer, was interviewed this past August by Golf Digest Magazine’s Dave Shedloski.³  During it, “The seven-time major championship winner unzipped his tan Ryder Cup jacket and pulled back his white shirt. Under clear medical tape there was a bulge on the left side of his chest, high up, just under his collarbone and near his shoulder — far higher than for most anyone else who receives a pacemaker.

That’s right. It was put there so it wouldn’t interfere with his golf swing.”

To believe nothing can be done to work around the impacts of MS amounts to a foolish capitulation.  It would mean giving in and relinquishing all control.  MS changes some or most of what we used to do but in reality we can still do some things we love. The key is often doing things in a different way.  In fact, actively searching for and finding how to do as much as possible can, in itself, bring joy back into your life.

As in the iconic line from the 1985 dance single by Jocelyn Brown, “Love’s Gonna Get You;”  you’ve “got the power!”  Contrary to popular belief, you do not need anyone to “empower” you.  In fact, finding how to do as much as possible can bring joy back into your life.

You do not believe it?  Did you ever wonder how Stephen Hawking has dealt with ALS?⁴

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“Geographic” note: Ironically, the idea and name for the iced tea and lemonade drink is believed to have come from a Denver area country club and Arnold Palmer himself.

¹ “8 Reasons You Shouldn’t Underestimate The Greatness Of Ron Popeil”, Huffington Post, Taste, October 06, 2014, Kate Bratskeir, www.huffingtonpost.com/2014/10/06/ron-popeil-facts-wow_n_5926408.html
² “Did Alternative Medicine Extend or Abbreviate Steve Jobs’s Life?”, Scientific American, October 27, 2011, by Jessica Wapner, www.scientificamerican.com/article/alternative-medicine-extend-abbreviate-steve-jobs-life
³ “Arnold Palmer after pacemaker procedure: ‘I wish everyone felt as good as I do'”, Golf Digest, August 28, 2014, Dave Shedloski, www.golfdigest.com/blogs/the-loop/2014/08/arnold-palmer-after-pacemaker.html
⁴ About ALS, ALS Association, www.alsa.org/about-als/what-is-als.html

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:”

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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.

I 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 National Multiple Sclerosis Society’s web page “Speech Problems”
• The Multiple Sclerosis Society of New Zealand’s website article “Multiple Sclerosis and Speech & Swallowing.”
• The American Speech-Language-Hearing Association web page regarding “Dysarthria“

Dear Immune System: I am Sorry but it’s Time to Let You Go.

By Jimmy Huston — 09/11/2014

We have had some good times together over the past 41 years, but now what you are doing to me is not acceptable.  We did fight off the chicken pox, some sore throats along the way and even hepatitis in college.  However from the best guess we can make around 8 years ago something went terribly wrong and you started attacking me.  I knew something was not right, and went to the doctor only to be misdiagnosed for a number of years.

Now we know the problem, and are going to put an end to it for good.  I know as I go through this there will be terrible times and I will feel miserable.  Each time I reach that point however, I will be smiling inside, knowing it’s directed at you and your time with me is extremely limited.  Enjoy your last couple of days as these doctors drop a nuclear bomb on you. You took precious time away from my family and even knocked me off the golf course! I will be extremely happy once you’re gone.

Blogmaster’s note:

Jimmy has been diagnosed with multiple sclerosis is undergoing stem cell replacement/transplantation at Northwestern Hospital in a procedure known as hemotopoietic stem cell transplant — or HSCT. Per a National Multiple Sclerosis Society web article, “Stem Cells in MS,” this procedure will hopefully result in “rebooting” the immune system.

The article explains: “In HSCT, these stem cells (derived from a person’s own bone marrow or blood) are stored, and the rest of the individual’s immune cells are depleted by chemotherapy or radiation or both. Then the stored stem cells are reintroduced usually by infusion into the vein. The new stem cells migrate to the bone marrow and over time produce new cells. Eventually they repopulate the body with immune cells. The goal of this currently experimental procedure is that the new immune cells will no longer attack myelin or other brain tissue, providing the person, what is hoped to be, a completely new immune system.”

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?

As 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 better-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

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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]

Not Just the Holiday Funk

Well established is the recognition and acceptance of “holiday funk.”

Christmas has a deep spiritual meaning to Christians. It is less about giving presents and mostly a time to think about Jesus.  Still, to many people, Christmas is also supposed to be spent sharing ourselves with family and loved ones.  A time to slow down our frenzied lives to enjoy “quality” time with our families and reflect on the blessings we have received. Certainly that’s what our culture presents as important.  Heck, that is how it has always been and should always be!  At least that is what I believe.

Today, I found myself in the midst of family and feeling useless and insignificant.  Is that the MS or the Holiday funk?

I think a mix of both.  I know the pseudobulbar affect is in play but I also believe the traditional “Holiday Blues” contributes a lot.

For the last few years I have felt lost, alone and generally miserable every holiday.  When we open our Christmas presents as a family, I find myself incapable of inserting myself into the moment.  I feel detached and unwilling to interact.  But, I force myself.  It is not fair to the others for me to inject and inflict my negative mindset.  Even worse, I find I am incapable of wresting myself out of the mental fog.  It is like being on the outside looking in.  Yup, like the song.

Regardless, I was redeemed by a three-year-old whose awe and excitement about the day reminded me this day was not about me but had a much deeper meaning than I had ever realized.  Oh sure, I wanted to present the woe-is-me version of myself and be the Ebeneezer Scrooge of the family, but I resisted and was so very glad.  There is NOTHING to be gained by being pitiful but the feelings are there, none-the-less.

Merry Christmas! Can I Say That?

Wait . . . will the PC Police allow me to say that?!  Bah humbug!  I am tired of kowtowing to elitists and cowering in the corner.  If words are upsetting, perhaps my physical appearance is equally upsetting!  jzeeesh!

Egad . . . what do I do?

Having multiple sclerosis is humbling in so many ways yet social acceptance of most any speech or idea other than the radical has gone to the extreme of intolerance.

In the late 20^th century using words as diverse as “handicapped” and “Secretary” fell out of favor as derogatory and limiting.  “Disabled” and “Administrative Assistant” became preferred.  These shifted focus and elevated the condition/task by causing people to rethink what they associated with the words in an attempt to garner empathy, understanding and respect.  More peculiar was the change from Interior Decorator to Interior Designer.  hmmm . . . somehow reality did not matter.  True Interior Designers were denigrated as the result of elevating the Interior Decorator.

Traditional values and opinions have been ridiculed and censored throughout history.  Is it real or is this something we simply allow by our silence?  I think the latter.  It is tacit approval by virtue of embarrassment.

If you hate holidays, perhaps saying “happy holidays” is offensive to you.  Taking it to its progressive conclusion, exchanging thoughts or simply conversing with each other should be forbidden in case I or you say something that just might be “offensive” to anyone within earshot.

Consider the case of 50-year-old Martin Bashir who on November 15, 2013, suggested Sarah Palin should receive the same treatment as punished slaves in America in past centuries.  I will not repeat it because it is not something I wish to put in writing.  However, it was without doubt, a vile and disgusting visual image with sexual overtones suggesting violent behavior toward the opposite sex.

By virtue of this inflammatory and defaming insult, Bashir spoke his own thoughts and did not quote anyone.  His words were intended to be accusatory and offensive and were not just an insult.  To his credit, he resigned and apologized.

On the other hand, 67-year-old Phil Robertson (Duck Dynasty family head and self-described Bible-thumper) was quoting the Bible as something he believed.  Rather than speak hatefully or endorse violence, he explained that the Bible – the book he believes to be the word of God – declares many things are sins but we are to love each other regardless.  He stated  “We never, ever judge someone on who’s going to heaven, hell.  That’s the Almighty’s job.  We just love ’em, give ’em the good news about Jesus . . .  We let God sort ’em out later . . .”

Robertson was suspended indefinitely by A&E after saying that “everything is blurred on what’s right and what’s wrong. . . Sin becomes fine . . .”  Although he continued with more adult descriptions of his thoughts, he said these things to a print reporter, not on TV.  To his credit, he did not resign or apologize.  [Click here for  GQ article.]

The difference is one spoke hatefully.  The other spoke out of conviction but humbly.

NONE of us lack bias and/or have the wisdom to take “truly” selfless actions to correct all wrongs.  Unfortunately, today’s Americans tend to elevate the ideals of the extremes rather than pursue rational give-and-take positions.  Too many insist on pursuing polarization.  People who “shape” their beliefs and inspect all points of view, then extract the best from each viewpoint are better equipped to make appropriate assessments.  Sadly, those who do not understand this approach accuse those with this attitude of being wishy-washy.  There is an apparent willingness to ridicule those who do not believe in one-size-fits-all narrow-minded viewpoints and values.  Although we desire to find the one rational solution for all situations, we only discover there are NO pat answers.

Independent and DIFFERENT opinions WITH CONVERSATION and CONSIDERATION are the pathways to problem solving.  Mindless drone/lemming behavior is dangerous.  Acceptance and forgiveness are too often forgotten and discarded.

As an ergonomist, I revel in diversity.  I embrace it.  The ridiculousness of censoring ourselves has become epidemic, sophomoric and irrational.  Grow up.  Get a spine.  Speak out.

I hope we all experience a Merry Christmas with “goodwill toward all.”

The Wild Bore

I 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?