Obsession, Fear, Reality

The world has been turned upside down. Our social structure is a mess and our “best minds” are baffled by COVID-19 — but won’t admit it.

Photo by eberhard grossgasteiger on Pexels.com

The Cambridge Dictionary on-line describes science as “(knowledge from) the careful study of the structure and behavior of the physical world, especially by watching, measuring, and doing experiments, and the development of theories to describe the result of these activities:” Note the absence of the the word “absolute.”

Too many have come to believe and accept that simply saying something is true because of the science makes it unchallengeable. However, even renowned brilliant scientists have been proven wrong. For example, Edwin Hubble disputed (disproved) Einstein’s theory that the universe is stable. [See https://www.space.com/31055-removing-cosmological-constant-was-the-blunder.htmlhttps://www.space.com/31055-removing-cosmological-constant-was-the-blunder.html]

Perhaps we simply don’t deal well with unknowns.

Assertively saying something “is science” only implies credibility but does NOT make an absolute. Science is based on theories which are and should be constantly challenged. However, to a great extent, human adults crave absolutes just as children crave structure. Those of us with multiple sclerosis should know this better than many. The cause of and treatment for MS are still unknown and being studied. There are more than 20 treatments currently available and accepted that range from stem cell replacement to steroids to chemical compounds. [See https://www.nationalmssociety.org/Treating-MS/Medications] Not knowing the cause and not having a cure is frustrating!

Being fearful of disease is understandable but standing still is imprudent. Why accept absolutes? The sad reality of human nature is the misguided can easily be turned into lemmings rushing to the edge of the cliff and diving into the ocean because someone they believed to be an “authority” told them to do it.

Life is too precious to squander. Live to full capacity. Continually search for truth and challenge absolutes. Consider opposing views before diving off the cliff.

To date, perhaps the only unchallengeable scientific fact is physical death.

COVID-19 and Multiple Sclerosis

Selected sections republished from the NMSS “What You Need To Know About Coronavirus (COVID-19)” [CLICK here for full text]
man wearing face mask in a dark room
Are people with MS considered a “higher – risk” group? MS itself does not increase the risk of getting COVID-19, however, certain factors associated with your MS may increase your risk for complications:
  • Chronic medical conditions, such as lung disease, heart disease, diabetes or cancer
  • Significantly restricted mobility, such as needing to spend most of your day seated or in bed
  • Age 60 or older
  • Possibly taking certain disease modifying therapies that deplete immune system cells
Sometimes, the body’s response to infections, including COVID-19, may cause a temporary worsening of MS symptoms. For example, you may have more trouble with fatigue, thinking, mobility, vision or other symptoms. Typically, these symptoms settle down once the infection clears up. If you are experiencing new MS symptoms or have any concerns about any of your MS symptoms please contact your MS healthcare provider. How can I help protect myself and others? There are actions you can take to help prevent the spread of respiratory viruses, including COVID-19. These include:
  • Cover your mouth and nose with a cloth face cover, like a bandana, when you have to go out in public. This is meant to protect other people in case you are infected – but have no symptoms. Do NOT use a facemask meant for a healthcare worker.
  • Wash your hands often with soap and water for at least 20 seconds. Use an alcohol-based hand sanitizer that contains at least 60% alcohol if soap and water are not available.
  • Avoid touching your eyes, nose, and mouth.
  • Cover your cough or sneeze with a flexed elbow or tissue, then throw the tissue in the trash.
  • Clean and disinfect frequently touched objects and surfaces.
  • Practice ‘social distancing’. Social distancing means avoiding gatherings (greater than 10 people) and maintaining distance (approximately 6 feet) from others when possible.
Should healthy people wear masks in public? Research from China and U.S. Hospitals suggests that small viral particles may stay in the air for a period of time after someone with the virus is coughing, sneezing or even breathing or talking in that particular area. The length of time viral particles stay in an area seems to be based upon things such as the amount of virus and the circulation of air in that location. It is unlikely that this occurs during social distancing outdoors as there is adequate air circulation. The CDC is now recommending people cover their faces when in public. Face coverings do not include medical masks, like N95 respirators or surgical masks. Instead, people are encouraged to wear homemade cloth masks like bandanas and scarves. What should I do about my MS disease modifying therapies (DMT) because of COVID-19? There are recommendations about DMTs and COVID-19 coming from multiple individuals, groups and organizations. While each has attempted to provide clarity and sound guidance, differences in the recommendations have created a significant amount of confusion. Decisions regarding disease modifying therapies (DMTs) are made based upon multiple factors, including:
  • Your MS disease course
  • Other medical conditions you may have
  • Allergies to DMTs
  • Other medications that are not compatible with certain DMTs
  • Risks (including infections) vs. benefit of DMT
  • Your values and risk tolerance
The National MS Society, based upon advice from our National Medical Advisory Committee, has developed guidance on the use of DMTs during the COVID-19 pandemic. In addition, we endorse the global advice provided by the MS International Federation (MSIF) – but emphasize that DMT decision making must be individualized and based upon multiple factors, including those listed above. Both the National MS Society DMT guidance and the MSIF global advice are endorsed by the Consortium of MS Centers and the MS Coalition. Should healthy people wear masks in public? Research from China and U.S. Hospitals suggests that small viral particles may stay in the air for a period of time after someone with the virus is coughing, sneezing or even breathing or talking in that particular area. The length of time viral particles stay in an area seems to be based upon things such as the amount of virus and the circulation of air in that location. It is unlikely that this occurs during social distancing outdoors as there is adequate air circulation. The CDC is now recommending people cover their faces when in public. Face coverings do not include medical masks, like N95 respirators or surgical masks. Instead, people are encouraged to wear homemade cloth masks like bandanas and scarves. What should I do about my MS disease modifying therapies (DMT) because of COVID-19? There are recommendations about DMTs and COVID-19 coming from multiple individuals, groups and organizations. While each has attempted to provide clarity and sound guidance, differences in the recommendations have created a significant amount of confusion. Decisions regarding disease modifying therapies (DMTs) are made based upon multiple factors, including:
  • Your MS disease course
  • Other medical conditions you may have
  • Allergies to DMTs
  • Other medications that are not compatible with certain DMTs
  • Risks (including infections) vs. benefit of DMT
  • Your values and risk tolerance
The National MS Society, based upon advice from our National Medical Advisory Committee, has developed guidance on the use of DMTs during the COVID-19 pandemic. In addition, we endorse the global advice provided by the MS International Federation (MSIF) – but emphasize that DMT decision making must be individualized and based upon multiple factors, including those listed above. Both the National MS Society DMT guidance and the MSIF global advice are endorsed by the Consortium of MS Centers and the MS Coalition. Photo by Engin Akyurt on Pexels.com

Sunshine Makes Me Weary

Vitamin D is touted as very beneficial and downright necessary for good health.  There are studies that demonstrate its benefit to everyone and especially those of us who have multiple sclerosis.

Sunshine is a primary source of vitamin D and requires little to no effort for us to absorb its vitamin D benefits.

However, I seem to be profoundly and negatively impacted simply by being in sunshine, regardless of the temperature.  Unfortunately, I haven’t found any research or medical explanation to support this speculation.

clouds dawn desert landscape
Photo by Pixabay on Pexels.com

Over at least thirty years, there have been more occasions than not when I simply went outside on even a partly cloudy day but in sunlight for less than 3 minutes, only to quickly experience profound fatigue and had to lie down as soon as possible.  In fact, I was often  wiped-out the rest of the day.

Is it not just the heat but the sun itself?

MS neurologists and other MS medical professionals have simply looked at me quizzically and offered nothing beyond “it must have been the heat.”  I doubt it.  Some of those days were very cold winter days.

Regardless, there is still more mystery to multiple sclerosis than knowledge.

Napping

According to Robert Preidt in his 12 August 2019 HealthDay News report titled “Too Much Napping May Signal Alzheimer’s, . . . dozing off during the day . . . might be an early warning sign that you have Alzheimer’s disease.”  (See https://www.webmd.com/alzheimers/news/20190812/too-much-napping-may-signal-alzheimers#2)

Yikes!  As if those of us with MS related fatigue don’t already have enough to be concerned about.

The words, “might be,” are significant.

adult dog on white bed
Photo by Lisa Fotios on Pexels.com

While Preidt’s assertion may be supported by scientific research, it can be difficult to assign a singular cause to a physical condition.  According to the National Multiple Sclerosis Society, “Fatigue is one of the most common symptoms of MS, occurring in about 80 percent of people [with MS].”  See NMSS video “Fatigue and MS, Part One” at https://www.youtube.com/embed/zlYpAF-Ch8U

Perhaps similar to a backhanded compliment, MS fatigue might be perceived as a welcome cause compared to Alzheimer’s.

Nowhere did Preidt’s article ascribe mitigating circumstances.  In that train-of-thought, nothing says there cannot be several and/or different “causes” for any condition.  In fact, the cause(s) of MS is(are) still unknown.  Plus, people with MS can also suffer from other diseases any person without MS can contract.

Our world is dynamic.  New diseases seem to crop up from nowhere.  Sadly, medicine is the performance of a search for cause-and-effect and subsequent treatment with many uncertainties.

The result: napping may contribute to or be a symptom of Alzheimer’s but it IS a symptom of multiple sclerosis.

WalkMS Denver 2019

It was another successful WalkMS Denver and five men from the 70/Four70 MS Men’s Self-help Group, again, manned the Support Group Information table in the CO-WY Chapter Mission Tent during the Walk on 04 May 2019.  Although a small group, the 70/Four70 men have been manning the info table at every WalkMS Denver since 2014.

Pictured in the first photo from left to right are Dan Kolbeck, Dave Bartmann, Robyn Moore (NMSS Chapter President), George F. Fischer, and Kirk P. Williams

NMSS Chapter President WalkMS Denver 2019

Pictured in this 2nd photo from left to right are Kirk P. Williams, George F. Fischer, LeeAnn Bellum (NMSS Director, Case Management), Suzanne Reel (NMSS Director, Walk MS), Efraim Rivera, and Dave Bartmann.2nd LeeAnn Bellum et al at MS Walk Denver 5-4-2019

Stem Cells for Autoimmune Disease

This is not an endorsement of this procedure, however this is one video everyone with MS will probably want to watch from beginning to end.

April 27, 2018, stem cell presentation at the Vatican by Richard K. Burt, MD, Chief of the Division of Immunotherapy, Department of Medicine, Northwestern University Feinberg School of Medicine.  Stem Cells for Autoimmune Disease Moderator: Sanjay Gupta, MD.

For more regarding the conference, see Unite To Cure A Global Health Care Initiative, “How Science, Technology and 21st Century Medicine Will Impact Culture and Society” held on April 26-28, 2018, in Vatican Cityhttp://vaticanconference2018.com/

 

“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.

Medical Exemption Program – 2017

The COLORADO MEDICAL EXEMPTION PROGRAM (CMEP) is a means-tested assistance program that runs from June through September sponsored by Xcel Energy. It provides a discounted rate on energy for individuals who live with heat sensitive medical conditions.

The Chronic Care Collaborative (CCC) is finishing the packets for the 2017 application period and hopes to have these ready the first week of March. You can also find the application and information on the CCC website.

Contact Libby (Libby.Taylor@ccc-co.org) for more information or applications.

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!

WalkMS 2016 – Denver

538  WalkMS 2016
Early morning prep on event day in the meadow to the west of the Museum.

For the 3rd year in a row, 70/Four70 staffed a men’s group information table at WalkMS on Saturday, April 30, 2016 in Denver’s City Park.

The event was held on a cold and lightly snowing spring morning however, spirits were still up-beat and energetic.  Musician and performer, David Osmond (son of Alan) of the famous entertainment family, sang an inspiring rendition of the National Anthem before the first RunMS Denver 5K.  The run was the first ever to kick-off the WalkMS festivities in Denver.

Ending multiple sclerosis for good will take all of us. It’s why WalkMS matters so much.  And it’s why you matter so much.  WalkMS helps us team up with friends, loved ones and co-workers to change the world for everyone affected by MS.  Together, we become a powerful force.  And with every step we take, every dollar we raise . . . we’re that much closer. Together, we will end MS forever.”

Thank you to all who participated by running, walking, fundraising, donating, and/or volunteering in the quest to find the cure for MS.

Pictured below are three members of the
70/Four70 MS Men’s Group:

535 WalkMS 2016 - Efraim Rivera-George Fischer-Kirk Williams
E. Rivera, G. Fischer, K. Williams

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


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.

Aging with MS: What to expect

The article below is from the NMSS on-line magazine, Momentum.

As people who live with MS age, they may find its effects changing, particularly if they’ve been living with the disease for decades. Sometimes it’s difficult to determine whether changing symptoms are the result of progression or normal aging. This article helps readers better evaluate the situation—and get appropriate treatment.

Source: Aging with MS – Momentum Magazine Online

Jekyll and Hyde

Can an MS exacerbation have no obvious physical component with its only apparent impact being on cognitioJeckyll & Hyden and behavior? Anecdotally the answer seems to be “yes.”

The signature impact of multiple sclerosis is its unpredictability and broad range of potential symptoms. Per the National Institutes of Health (NIH): “A small number of those with MS will have a mild course with little to no disability, while another smaller group will have a steadily worsening disease that leads to increased disability over time. Most people with MS, however, will have short periods of symptoms followed by long stretches of relative relief, with partial or full recovery. There is no way to predict, [especially] at the beginning, how an individual person’s disease will progress.”

A recent exacerbation seemed to only affect my cognition and behavior rather than cause any outward physical symptoms. My behavior was disturbing and definitely not how I had ever handled difficult and stressful situations. It was probably triggered by significant interaction with our insurance company, bank, and contractors to repair substantial hail damage.

For a time, my personality dramatically changed from my consistent and life-long diplomatic nurturing personality into an angry confrontational person. The change was similar to turning on a fluorescent light: the light slowly becomes brighter and brighter. In the case of this exacerbation, this behavioral response became more and more frequent until it was the only way I responded! I did not recognize the change until I was well into being a disagreeable ogre. I would often realize I was exhibiting uninhibited and inadvisable behavior but could not help it. If I had been asked if I’d like a cup of coffee, my normal self would have responded “Yes, thank you” or “No, thank you.” However, during the apparent exacerbation, I would probably respond with obvious irritation “What makes you think I want a cup of coffee?!” Also see Who the Heck is this Guy?!

After a few months of this uncontrolled antagonism, suspicion and resentment, I woke up one day to the realization that I was not upset. In fact, “everything was rosy.” I was again unconsciously and naturally behaving in a civilized and congenial way. The way I had always been prior to the “exacerbation.”  My return to my previous and more agreeable behavior was similar to turning the light off: no delay. The light turned off instantaneously and my personality was back to normal.  My RRMS had gone into a stage of remission.

Colorado’s Xcel Energy Medical Exemption Program 2015

The 2015 Colorado Medical Exemption Program (CMEP) is underway and completed applications are due by May 1, 2015. CMEP is a special energy-assistance program offered by Xcel Energy and overseen by the National MS Society CO-WY Chapter.

As an exemption from Xcel’s Tiered Electricity Summer Rates, CMEP is designed to help reduce summer electricity bills for Colorado’s Xcel Energy electricity customers who use life support equipment or have a medical condition that requires a high usage of electrical power.  Click here for the online application.

Spread the word to Colorado friends and family who are service customers of Xcel Energy and who may be interested in or benefit from this program. The Chapter helped over 550 households last year and the goal is to increase the number of households helped by 200.  Click here for an information sheet on the program.

For more information, please contact Tim Bergman (303) 698-5409 or Caitlin Westerson (303) 698-5435.

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.

Senator Linda Newell, Kirk, Carrie Nolan, NMSS
(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

Who the Heck is this Guy?!

At age 40 he experienced his first traumatic multiple sclerosis (MS) symptom – or exacerbation. It was revealed in the form of a swift onset of a numbness-like sensation on the left side of his head and face. 1

Something was wrong and he was more than mildly concerned. What was happening to Bigfoot feethim? Over the course of that weekend, he racked his brain intently searching for an explanation. Was it the weed killer he sprayed on their property that week? Was it because as a pre-teen he rode his bicycle behind the truck-mounted fogging unit that spewed insecticide to kill mosquitos?

He went to his family doctor that Monday who examined him then stated “Among several possibilities, you might have MS.”   The doctor referred him to a neurologist accompanied by a clinical description of the symptom; “Facial tingling sensation. Neuropathy of L trigeminal nerve, ophthalmic maxillary branches.

He was puzzled and mildly irritated.  What in the world did that mean?!

He had been probed by MRIs yet it was not until he was 46 that a neurologist finally declared “. . . a diagnosis of MS seems most likely.” This news was not delivered to him face-to-face.  It came in a letter.

Somewhat shaken but not stunned, he decided he needed a neurologist with a better bedside manner.

He continued to work while enduring the “minor” challenges of MS including dizziness (vertigo), balance issues, vision issues, profound fatigue, dexterity issues, suspected gout, periodic excruciating difficulty swallowing, and more.  Yes more.  An unlimited variety.  Most of the time he could only approximate a description of what he was experiencing.  It was stressful trying to explain most of the symptoms in a way others could understand.  The symptoms seem to defy an exacting description.

Eventually he experienced the inevitable exacerbation he could not disguise.  He had visible weakness in his right leg. It was bad enough that he began to use a cane.  A nice wooden cane, not a therapeutic-style cane like the one used by the dad, Marty Crane, on the old sitcom “Frasier.” 2  But he was able to keep working.

By age 55, MS had taken unshakable control. The symptoms were seriously impacting his job performance and often putting him in physical danger.  Being sensible, he requested his doctor perform a Functional Capacities Evaluation (FCE.)  Sadly, the results discouraged his continued employment and soon after, he went on short-term disability for six months.  This was immediately followed by unchallenged long-term disability.  His MS continued to worsen.  The symptoms would cycle through getting “better” and worse.  All the while new symptoms would appear.  Humans generally adapt to the conditions presented and although difficult, he learned to work around whatever happened.

At one point, his personality drastically changed. It was something he had not recognized at first and was woefully unprepared to cope with this side journey.  Was this a symptom of MS?  It was bizarre to him.  He spent his entire life being friendly and easy-going: the guy who rarely got upset who stopped fights, not started them.  Yet, without warning, he found he became easily agitated with little, if any, compunction about confronting and challenging people.  He was virtually unable to stifle his inappropriate responses to even minor irritations – although he tried.  Moreover, he seemed to foster hostility.

During this time he also had trouble concluding a conversation until long after it should have ended.  It was just another facet of MS’s impact.  The control MS sometimes has on personality is too often downplayed or dismissed by medical professionals, counselors, friends, family and other lay people.

In the MS Foundation webpage article, “Cognitive Deficits in Multiple Sclerosis,” there is this on-target description regarding what he experienced.3

The fact is “. . . people who have MS may have the . . . problem of being unable to stop themselves.  They may be very talkative and uninhibited, blurting out comments they would have kept to themselves in the past.  . . . they seem very impulsive and oblivious to the reactions of others. Furthermore, they may have a ‘short fuse’ and experience unpredictable angry outbursts.”

There is little, if any, doubt in mind that the above story will resonate with the majority of people diagnosed with multiple sclerosis. A sad reality and twist of fate.

1 See National Multiple Sclerosis Society MS Symptoms

2 Retired Detective Martin “Marty” Crane was a character played by actor John Mahoney in the sitcom, Frasier. Marty had been shot in the hip after interrupting a robbery attempt. The injury forced him to retire and use a quad-point (four legged) cane as a result.

3 See the article “Cognitive Deficits in Multiple Sclerosis” By Jennie Q. Lou, MD, MSc, OTR/L, Carolyn Tischenkel, Lindsey DeLange, BS. Published on the Multiple Sclerosis Foundation webpage regarding Coping with Multiple Sclerosis.

Potential New Aid for MS

SEnS Assistive Equipment
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

“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.”

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