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