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

Medical Exemption to Xcel’s Tiered Electricity Rates

After 3 years, Colorado FINALLY has a Medical Exemption to Xcel Energy’s summertime Tiered Electricity Rates!

This applies to Xcel Energy’s Colorado electric service customers with a medical necessity for the high utilization of air conditioning in the summer and who are within the household income guidelines. Of course, a customer’s actual (historical) electrical usage may not make it practical and worthwhile to apply for this exemption.

I have received comments from several people with MS that it is disheartening a means test is still required and the program does not benefit enough Colorado Xcel customers with MS.

In general, the Colorado Medical Exemption Program (CMEP) offers a rate of $0.063 per kilowatt-hour (kWh) for all electricity used each month from June through September 2014. The rates will revert to the standard rates beginning in October of 2014. This means a participant will pay one rate for the entire summer therefore avoiding paying the higher tiered rate. All other customers are charged standard tiered electricity rates during the summer: $0.046 for the first 500 kilowatt-hours and $0.09 for use exceeding 500 kilowatt-hours.

The hope is this WILL help a meaningful number of people with MS and it is absolutely a substantial improvement over Xcel’s “experiment” last year.

Perhaps you or someone you know with a medical condition resulting in heat sensitivity can benefit. The exemption is available to any Colorado Xcel Energy customer with a medical need and not just those with MS. Individual homes will be receiving complete information on this exemption program in the next couple of weeks. It will include a letter from Patrick Boland (Xcel), Healthcare Provider form, Participant Application, and program description. NOTE: application submission deadline is May 1. Click here for general information on eligibility and the Federal Poverty Level. Call the Colorado-Wyoming Chapter of the National Multiple Sclerosis Society at 303-698-5439 to find out more. The Chapter is the official administrator of the CMEP.

If you are not eligible for this plan or choose not to participate, you may find Xcel Energy’s Average Monthly Payment Plan may also help balance out your energy bills during the year. This plan gives a more predictable monthly payment and spreads your heating and cooling costs over the entire year.

Many thanks to those Coloradans with MS who provided documentation and/or in-person testimony. Without their efforts, this accommodation would have never happened.