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.”

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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!

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.

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.”

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.

Fisco ballAs 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


“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

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?

soccerballsAs 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 brainbulbbetter-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


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]