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!