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.

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.

Not Just the Holiday Funk

Blue Bow

Well established is the recognition and acceptance of “holiday funk.”

Christmas has a deep spiritual meaning to Christians. It is less about giving presents and mostly a time to think about Jesus.  Still, to many people, Christmas is also supposed to be spent sharing ourselves with family and loved ones.  A time to slow down our frenzied lives to enjoy “quality” time with our families and reflect on the blessings we have received. Certainly that’s what our culture presents as important.  Heck, that is how it has always been and should always be!  At least that is what I believe.

Today, I found myself in the midst of family and feeling useless and insignificant.  Is that the MS or the Holiday funk?

I think a mix of both.  I know the pseudobulbar affect is in play but I also believe the traditional “Holiday Blues” contributes a lot.

For the last few years I have felt lost, alone and generally miserable every holiday.  When we open our Christmas presents as a family, I find myself incapable of inserting myself into the moment.  I feel detached and unwilling to interact.  But, I force myself.  It is not fair to the others for me to inject and inflict my negative mindset.  Even worse, I find I am incapable of wresting myself out of the mental fog.  It is like being on the outside looking in.  Yup, like the song.

Regardless, I was redeemed by a three-year-old whose awe and excitement about the day reminded me this day was not about me but had a much deeper meaning than I had ever realized.  Oh sure, I wanted to present the woe-is-me version of myself and be the Ebeneezer Scrooge of the family, but I resisted and was so very glad.  There is NOTHING to be gained by being pitiful but the feelings are there, none-the-less.

Merry Christmas! Can I Say That?

Political Correctness copWait . . . will the PC Police allow me to say that?!  Bah humbug!  I am tired of kowtowing to elitists and cowering in the corner.  If words are upsetting, perhaps my physical appearance is equally upsetting!  jzeeesh!

Egad . . . what do I do?

Having multiple sclerosis is humbling in so many ways yet social acceptance of most any speech or idea other than the radical has gone to the extreme of intolerance.

In the late 20th century using words as diverse as “handicapped” and “Secretary” fell out of favor as derogatory and limiting.  “Disabled” and “Administrative Assistant” became preferred.  These shifted focus and elevated the condition/task by causing people to rethink what they associated with the words in an attempt to garner empathy, understanding and respect.  More peculiar was the change from Interior Decorator to Interior Designer.  hmmm . . . somehow reality did not matter.  True Interior Designers were denigrated as the result of elevating the Interior Decorator.

Traditional values and opinions have been ridiculed and censored throughout history.  Is it real or is this something we simply allow by our silence?  I think the latter.  It is tacit approval by virtue of embarrassment.

If you hate holidays, perhaps saying “happy holidays” is offensive to you.  Taking it to its progressive conclusion, exchanging thoughts or simply conversing with each other should be forbidden in case I or you say something that just might be “offensive” to anyone within earshot.

Consider the case of 50-year-old Martin Bashir who on November 15, 2013, suggested Sarah Palin should receive the same treatment as punished slaves in America in past centuries.  I will not repeat it because it is not something I wish to put in writing.  However, it was without doubt, a vile and disgusting visual image with sexual overtones suggesting violent behavior toward the opposite sex.

By virtue of this inflammatory and defaming insult, Bashir spoke his own thoughts and did not quote anyone.  His words were intended to be accusatory and offensive and were not just an insult.  To his credit, he resigned and apologized.

On the other hand, 67-year-old Phil Robertson (Duck Dynasty family head and self-described Bible-thumper) was quoting the Bible as something he believed.  Rather than speak hatefully or endorse violence, he explained that the Bible – the book he believes to be the word of God – declares many things are sins but we are to love each other regardless.  He stated  “We never, ever judge someone on who’s going to heaven, hell.  That’s the Almighty’s job.  We just love ’em, give ’em the good news about Jesus . . .  We let God sort ’em out later . . .”

Robertson was suspended indefinitely by A&E after saying that “everything is blurred on what’s right and what’s wrong. . . Sin becomes fine . . .”  Although he continued with more adult descriptions of his thoughts, he said these things to a print reporter, not on TV.  To his credit, he did not resign or apologize.  [Click here for  GQ article.]

The difference is one spoke hatefully.  The other spoke out of conviction but humbly.

NONE of us lack bias and/or have the wisdom to take “truly” selfless actions to correct all wrongs.  Unfortunately, today’s Americans tend to elevate the ideals of the extremes rather than pursue rational give-and-take positions.  Too many insist on pursuing polarization.  People who “shape” their beliefs and inspect all points of view, then extract the best from each viewpoint are better equipped to make appropriate assessments.  Sadly, those who do not understand this approach accuse those with this attitude of being wishy-washy.  There is an apparent willingness to ridicule those who do not believe in one-size-fits-all narrow-minded viewpoints and values.  Although we desire to find the one rational solution for all situations, we only discover there are NO pat answers.

Independent and DIFFERENT opinions WITH CONVERSATION and CONSIDERATION are the pathways to problem solving.  Mindless drone/lemming behavior is dangerous.  Acceptance and forgiveness are too often forgotten and discarded.

As an ergonomist, I revel in diversity.  I embrace it.  The ridiculousness of censoring ourselves has become epidemic, sophomoric and irrational.  Grow up.  Get a spine.  Speak out.

I hope we all experience a Merry Christmas with “goodwill toward all.”

“See What You Have Done”

A current ad on late night TV evoked in me a torrent of mangled thoughts.  It promotes a compilation of Elvis Presley singing music including the song “C.C. Rider.

Promotional photograph of Elvis Presley, taken...I was immediately transported back to my teenage days when I played in a rock band and particularly the one weekend we were the back-up band for Wayne Cochran & The C. C. Riders at the long defunct “Bud & Swede’s” in Watseka, IL.

My mind’s eye flitted around erratically from thoughts about Elvis and his mess of a life to suddenly and disconnectedly jumping to the mish mosh havoc multiple sclerosis inflicts on a person.  Yes, an odd assemblage of happenings, but a memory never dies: Memories become altered, sometimes reassembled, but generally hang around waiting for the firing of an obscure neuron to stimulate it to life.

MessThe lyric “see what you have done” (from C. C. Rider) stuck in my mind.  I could not shakefree of it.  I began to think about how the vast majority of people over 40 have done a lot, yet how much was of substance?  The maxim “Quantity does not equal quality” is spot-on.

Some wonderful opportunities slip by but most of us are still able to grab hold of at least a few great experiences from countless new encounters.  The question becomes; who defines what is standard and normal versus uncommon and exceptional?  That question indignantly whacked me on the back of my head a number of years ago when reading my ENT doctor’s written report regarding his findings.  He had examined me to determine if my “dizziness” like condition might not be neurological.  The report included the word “unremarkable.”  What?!  So, unremarkable is another word for expected?  I was insulted although no insult was implied or intended.  I suppose we all think we are outstanding but it is not good to be too “interesting” when it comes to our health.  However, the use of that word – even as part of the medical terminology – is disconcerting.

Being troubled and almost immediately after the first few seconds of the Elvis ad, I impatiently changed stations and watched a snippet about the late Annette Funicello (who had MS) and the Mickey Mouse Club.  hmmmmm  Are we duped into believing we can change what is to be?  Can we instantaneously jump from being run-of-the-mill to astonishingly outstanding?  Or, would it just appear to be instantaneous to others?

I am convinced the Mouseketeers’ lives were the most marvelous any kid could imagine. At least those of us who watched them thought it.  Conversely, a lot kids believe their lives are/were dull and going nowhere.  Reviewing and assessing our lives seems to be compulsory as teenagers and again when we begin to cross into our “senior” years as a “mid-life crisis.”

Perhaps we should simply take comfort in what Willie Robertson on Duck Dynasty once said  “The key is not to get discouraged in all the wrong turns you make.”  And as Jase, Willie’s brother, said about life’s twists and turns, “All in all . . . awesome!