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.

“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.

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

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.”