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/

 

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.

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.

Dear Immune System: I am Sorry but it’s Time to Let You Go.

By Jimmy Huston — 09/11/2014

We have had some good times together over the past 41 years, but now what you are doing to me is not acceptable.  We did fight off the chicken pox, some sore throats along the way and even hepatitis in college.  However from the best guess we can make around 8 years ago something went terribly wrong and you started attacking me.  I knew something was not right, and went to the doctor only to be misdiagnosed for a number of years.

Now we know the problem, and are going to put an end to it for good.  I know as I go through this there will be terrible times and I will feel miserable.  Each time I reach that point however, I will be smiling inside, knowing it’s directed at you and your time with me is extremely limited.  Enjoy your last couple of days as these doctors drop a nuclear bomb on you. You took precious time away from my family and even knocked me off the golf course! I will be extremely happy once you’re gone.

Blogmaster’s note:

Jimmy has been diagnosed with multiple sclerosis is undergoing stem cell replacement/transplantation at Northwestern Hospital in a procedure known as hemotopoietic stem cell transplant — or HSCT. Per a National Multiple Sclerosis Society web article, “Stem Cells in MS,” this procedure will hopefully result in “rebooting” the immune system.

The article explains: “In HSCT, these stem cells (derived from a person’s own bone marrow or blood) are stored, and the rest of the individual’s immune cells are depleted by chemotherapy or radiation or both. Then the stored stem cells are reintroduced usually by infusion into the vein. The new stem cells migrate to the bone marrow and over time produce new cells. Eventually they repopulate the body with immune cells. The goal of this currently experimental procedure is that the new immune cells will no longer attack myelin or other brain tissue, providing the person, what is hoped to be, a completely new immune system.”

The Negative Impact of a Sedentary Life

The “Catch-22”
Many diseases/conditions cause a need to sit or lie down either primarily or often. Multiple sclerosis is just one of the many. Frustratingly, sitting longer than ½ hour can be unbearable, too. Standing can be difficult because of balance issues.

Broken lathPer the August 19, 2014, article in Grandparents.com, The Risks of Sitting Too Much (click here), “Research shows logging long hours on the couch or behind a desk raises the risk of chronic health ills like heart disease, diabetes, and cancer, along with premature death – even among those who exercise regularly.” The article continued by citing an unnamed Australian study that purportedly found that “people who sat 11 hours or more a day had a 40 percent increased risk of dying over the next three years compared to those who sat for fewer than four hours a day.” If the intent is to frighten, that goal has been achieved!

Regardless of the accuracy of this finding, the primary dilemma for each of us with MS is what kind of exercise can I actually do?!

Some Options
A National MS Society web article on exercise (click here) asserts “in addition to being essential to general health and well-being, exercise is helpful in managing many MS symptoms.” It suggests Yoga (click here) or Adaptive Tai Chi (click here) as potential exercise programs.

Yoga may require too much physical dexterity but Adaptive Tai Chi can be accomplished sitting in a chair. However, there are a significant number of people for whom these programs are so challenging that these are impossible or dangerous to even attempt.

What about exercising in water? (Click here.) “The unique qualities of water provide exceptional benefits to people with MS. Water helps people with MS move in ways they may not be able to on land.

More
Check out the interview with Dr. Jeff Hebert of the Rocky Mountain MS Center at Anschutz Medical Campus. (Click here.)

Do Not Neglect
Exercise your mind. MS caused cognition and vision problems can make exercising your mind extremely difficult. If able, read. There are those who believe programs such as Lumosity are beneficial, however I found Wii Sports VERY helpful. It allows the user to use broad range of motion or slightly move the hand and wrist in order to play.

When I have the physical capacity/stamina, Wii is fantastic in its ability to help exercise and gauge eye-hand coordination and mental processing. The difference from Lumosity is that Wii Sports is fun and engaging. I cheated on many of the Lumosity exercises just to complete those and still got 50% correct. hmmmm

The Bottom Line
It is vital to keep your mind and body active to the level at which you are capable. Do something. It is amazing what is actually possible and how much better you feel physically and mentally.

This blog posting only hints at the issue and is intended to encourage the assessment of your need and ability and further explore the options: regardless of your current health.

The Acknowledgement of Stress

Are You a Doctor?!
For too many years after I was first the Mighty Favogdiagnosed with possible (yes, possible) multiple sclerosis, I was emphatically told numerous times that stress did not cause an exacerbation.

Other than the impact stress has on our general health over time, I was led to believe stress had absolutely no impact on MS. This opinion has changed.

In the June 24, 2014, NMSS on-line publication regarding a “Joint Medical Meeting (CMSC/ACTRIMS),” is an article, Mind Over MS, by Carrie L. Sammarco and colleagues at NYU Langone Medical Center in New York. It “reported very early results from The Mindfulness in MS program, a weekly program designed to reduce stress and enhance quality of life in 10 people with MS through mindfulness-based techniques, such as body awareness, breathing, progressive relaxation, meditation, visualization, and hypnosis.”

Finally some recognition of the potential for stress to negatively impact the progression of multiple sclerosis! Is this a “duh” moment?

The Lab Rat Roared
It has been demonstrated to me over and over and over for years that some medical professionals (MPs) are bad at listening and have a tendency to view their MS patients as little more than lab rats. We who suffer the impacts of MS absolutely know our bodies better than anyone else. More often than not, we are surprisingly capable of making a correct albeit sheepish determination about a symptom’s possible cause: especially when there is a strong potential for it being caused by MS.

This is not to say we are always right, but my anecdotal evidence has proven this to be true more often than not.

Who has not heard a neurologist or other MP say something akin to “you know, not everything is caused by MS:” A not-so-subtle admonition and dismissal after you just told the MP you believe it is MS related. These are the highly educated medical “Board Certified” professionals and you are just the patient. Therefore, what a patient suggests as a cause is obviously flawed. The mocking disdain and dismissive attitude is more common than most people would like to believe. We ‘laypeople’ “are not sufficiently trained to make a credible suggestion about a possible cause of a medical concern.”

However, so little was and is known about the disease that the MPs — in what amounts to a waste of time and money — treat the pain in your big toe for some cause/malady other than MS. The next thing you know, you have gone through a couple of weeks and two hypodermic injections into your big toe to treat gout. The MP’s justification? “We have to rule out the other possibilities.” (An actual example situation.)  Could not they first rule out MS as the cause?  No.  (Refer to the 10 words in this paragraph.)

Consequently, we generally accept the therapy an MP prescribes: even when it might do absolutely nothing to relieve or eliminate the symptom. However the symptom gradually subsides. – hmmm . . . perhaps it is MS?

Just Get Out
So, back to the stress topic . . . A tenet of the Dinner table place setting70/Four70 MS Men’s Group is the belief in the need to maintain social contact. i.e. To regularly get out of the house to be with other people. Specifically, we believe that men with MS need to get and benefit from getting together with other men with MS.

Per the Betty Hardwick Center, “. . . humans are inherently social beings. Socialization, or enjoying other people’s company and maintaining a sense of connectedness to others, is an important component of stress reduction.” As a small group of men, this benefit is even more likely.

The Betty Hardwick Center article continues: “. . . quality, rather than quantity counts when it comes to interpersonal relationships. In other words, surrounding yourself with a large number of people who you don’t know very well is less effective than having 2 or 3 close confidants when it comes to successfully reducing stress.” Providing an environment of confidentiality, understanding, and frank discussion fosters the benefit.

Regularly meeting with other men with MS encourages the development of trust. Plus, a man sometimes feels more comfortable discussing some symptoms and issues with another man with MS before discussing it with a medical professional or even a member of his family. Describing a symptom to a medical professional is understandably met by a clinician’s viewpoint rather than a true understanding. Moreover, when describing a symptom to a family member or friend it is common to be met with the response “oh, I have that sometimes” when, in fact, they have never had what you are trying to describe. To complicate things, you also cannot find the right words to accurately describe the symptom!

The bottom line: meeting with other men with multiple sclerosis in a comfortable setting is of immeasurable benefit. It is a high priority stress relieving activity and should be an integral component of your healthcare.

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]

Get Out!

Yes, men with MS, leave your house.  Get out and about and mingle with other men with MS.  It is GOOD camaraderie and pretty darned positive for your spouse or significant other, too!

Harley Davidson bikeThere is research that postulates social isolation contributes to a condition of ongoing stress and can lead to serious health problems.

Quoting from an on-line article in My Optimum Health  “It takes effort to stay connected. Between kids and work and everything else, people are busy. Sometimes it may feel like it’s just too hard to stay in touch. But if you can find the time and energy, you may be pleasantly surprised at how fulfilling it can be. Having a few close, mutually supportive friends can be a key to staying healthy. Not only is having friends more fun, these relationships may also help you:

  • Feel supported
  • Stay mentally sharp
  • Reach your goals
  • Develop a more active lifestyle
  • Reduce stress
  • Have better health outcomes
  • Enhance your sense of well-being and happiness
  • Lengthen your lifespan”

So ignore the inclination to use the excuse you “don’t have the energy” or “its too far” or anything else: GET OUT!

No RSVP is necessary (although we appreciate it) 70four70@weplan.com
  See details on the Third Thursday Happy Hour page on this blog. Click here

This isn’t about drinking.  It’s about being with other men who know
exactly what you are talking about without feigning understanding.
You can order a water, soft drink, beer, coffee, tea or nothing!

~ Kirk P. Williams

Impact on Mobility – Equipment Repair

disability symbolWhether you buy a lawn mower or auto or smart phone, equipment failure can stop you in your tracks and in the case of a wheelchair, this is not just a figure of speech!

Wheelchair repair may not personally impact you but you may know someone to whom this is critically relevant.

I received the following today, 8 May 2014, in an email from Monica Aden, Senior Manager, NMSS Connection Programs:

Wheelchair repair is essential to many peoples’ mobility, independence, and ability to contribute to and participate in society. There’s concern that Medicare policies are restricting access to wheelchair repair services. If you’re a Medicare beneficiary who has experienced difficulty getting your wheelchair repaired, please help us better understand this issue by completing a short survey [https://www.surveymonkey.com/s/wheelchair-repair].

We ask that you share this email with your group members, peers and others in your network of support. The survey has been reviewed and approved by Society staff. The timeline for feedback is very tight — the survey closes early next week — so time is of the essence. Thank you in advance for sharing this with others. It is important that we hear from those impacted.”

I also find it important that “Medicare will only help pay for these equipment and supplies if they’re [sic] provided by contract suppliers.”  See http://www.medicare.gov/coverage/wheelchairs.html

Big Boys Don’t Cry

In recent months and several times a week I “feel” healthy enough that I slip into thinking “I could work!”  Then unceremoniously, the thought is slammed into the ground by the reality of my disability.

Is the phantom nature of Relapsing/Remitting Multiple Sclerosis (RRMS) the lessening of some disability followed by a different and heightened disability followed by improved ability and so on?  Maybe it is just one major disability such as not being able to walk that sometimes improves and sometimes worsens.

Do we cry about any of it?

It is my contention that American males tend not to cry.  Although I have come close many times and I certainly wanted to, I do not generally come to tears.

Derick Whitney’s posting “Why is it so Hard for Men to Cry?” in the blog, Psych Central, stated “It is ingrained in many men that masculine identity means holding back the tears except during times of extreme grief.”  Pseudo Bulbar Affect aside, guys DO benefit from a good cry at least a couple of times in life!  (See the July 21, 2010 “Emotional Freedom” article by Judith Orloff, M.D., in Psychology Today.)  Sadness becomes a concern when any of us – male or female – stay depressed for an extended time with or without crying.

MS is a big source of disappointment, discouragement, sadness, and grief.

I lament the loss of my most productive income-earning years and find I am perhaps overly concerned about someday being within the Federal Poverty Level but I consciously distract myself by doing as much as I can for myself, my family, and as a volunteer.  It is less important how others see me than how I view myself and without feigning humility, I do very little in comparison to most people in a similar situation.

For all (I’m relatively sure all) people, life comes with disappointment.  Life also brings immense joy.  Irrespective of how these truly weigh-out, I have chosen to dwell on the positive experiences.  This approach to life has evidently been at least moderately successful since I have not experienced depression for any significant length of time.  Sure, my mind wanders into the glorious past but I only conjure up the good times.  This is certainly a more healthy way to look at the past than dwelling on the negative things in my life.  The danger is in the potential for delusion and the tendency for my mind to create revisionist history.  Sometimes I even believe I can still perform in the same way or better!  A deluded positive slant still seems far better than wallowing in self-pity.

So, I do what I can and do not concern myself with what I did and can no longer do — at least in the same way.  I look forward and up instead behind me and down.  I see what I can do rather than what I cannot.  For the most part, banging my head against a wall will simply produce a headache or worse!

Contrary to popular thought, MS has me and I have MS.  It is not something to be ignored but to be dealt with and worked around as much as possible.  Much like the value of π (pi), for practical purposes, my potential is infinite.  Denying it is much like denying living.

Now what do I do with my life?


You might also want to read Laurie Clements Lambeth’s MS Connection blog entry “Crybaby” of March 14, 2014.  [Part of the above posting is a comment to her blog.]

© 2014 Kirk P. Williams

Researchers Discover Brain Protein Linked to Alzheimer’s

Lab vesselsWhile reading the article by Brie Zeltner in The Plain Dealer regarding the discovery by researchers at the Cleveland Clinic, I immediately thought about the potential relationship to multiple sclerosis and the associated cognitive problems.

Evidently, researchers “have identified a brain protein that may play a key role in the memory loss associated with Alzheimer’s disease.

I flashed back to the extended period of time when my neurologist had me on a once per month regimen of an intravenous infusion of a high dose of Solu-Medrol to “take care of the inflammation.”  Is there perhaps a link between MS and the brain protein, known as Neuroligin-1 (NLGN1)?  According to the article, this protein “has previously been associated with long-term memory formation.

My hope is that there is a real potential for investigating the link between this protein and MS.  It may be grasping-at-straws but with so little known about the cause of MS, perhaps this potential is worth at least questioning.

Dr. David Brown, chairman of the Clinic’s Anesthesiology Institute and one of the authors of the study said “It might work in many different disease processes that use neuro-inflammation as the central disease feature.”  Zeltner reports “Brown believes that targeting microglia inflammation may have even more disease applications than they currently know.

At any rate, I encourage you to read “Cleveland Clinic Researchers Discover New Brain Protein Linked to Alzheimer’s” on Cleveland.com.

Case-in-Point

Part of the January 2014 News to Use prepared by Dale Last at the CO-WY Chapter of the NMSS included this advice:

On Medicare Advantage?  Make Sure Your Doctor is Still in Your Plan

PaperworkSome physicians around the country are being dropped from Medicare Advantage networks and several MS neurologists have been speaking out about the issue, concerned that people with MS will feel the impact if their doctors are dropped.

The American Medical Association and approximately 90 specialty societies have taken the lead to address this with the Centers for Medicare and Medicaid Services and the National MS Society is working with the American Academy of Neurology to track the issue and determine impact.  People currently on Medicare Advantage plans that find that their doctor is no longer part of the plan are able to switch back to Original Medicare between January 1 and February 14.  See Medicare Interactive for more information.

Shortly after forwarding this info to others with multiple sclerosis, I received this reply email containing a cautionary tale . . . the names have been removed or changed . . .

Might want to pass this on:

I encountered a small shock this afternoon.  I had a scheduled appointment at [the MS Center] with [my doctor] today, first appointment after my [drug] infusion (which there is now only one infusion every six months.) I checked in, only to be informed that [the MS Center and hospital] no longer accept my Medicare Supplemental / secondary insurance: as of January 1. 

I have had that policy since I started Medicare Part B back in 2009.  Never thought to check if [the MS Center/hospital] was or wasn’t participating this year.  After all, they always have AND well it’s [my big-name insurance company], right?!

So now I am on the hook for 20% co-pays at [the hospital].  My policy covers everything above whatever Medicare pays, at least for participating providers.

Can’t go back retroactively and change plans for 2014, of course.  My error for not researching carefully this year and taking things for granted.  My other providers are still taking [my big-name insurance company].

I just won’t be doing any overnights or surgeries at [that hospital].  As it turns out, the actual co-pays, as far as I have calculated them so far, for things like visits with [my doctor], his P.A., labs, etc. are minimal. But I will have MRI and other procedures done elsewhere.

Moral of the story: check your provider lists each year.