The Obvious Question

 

table and chair backsIs there any research into the cause of multiple sclerosis?  At least on the surface, all multiple sclerosis (MS) research seems to be on symptom management instead of finding the cause or causes.  Could it be because there is far more profit via recurring sales of medications that manage the symptoms?

Aging with MS

This is a republished article from Momentum Magazine.

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

So, What About Brain Games?

FrustratedFrom the beginning, I assumed losing physical abilities as a result of MS was a given. So, I made my goal to be to retain as much mental power as possible. I might not be able to walk but I was determined to keep my mind in shape!

On October 20, 2014, the Stanford Center for Longevity and the Max Planck Institute of Human Development released a joint statement [click here] asserting there is “little evidence that playing brain games improves underlying broad cognitive abilities, or that it enables one to better navigate a complex realm of everyday life.”

Note the distinction: “brain games” as opposed to “activity games.”

It is an admittedly anecdotal experience but by playing an activity game on Wii Sports, I learned a lot about how some effects of MS were actually impacting me on a day-by-day basis. Most significantly, brain games such as Lumosity could not hold my attention: forget about it improving my memory! I got bored quickly and would end up cheating just to get through that day’s puzzles. Interestingly, even after randomly selecting answers, I never scored below 51% and often, much better.

On the other hand, Wii Tennis was actually fun and I could tell if my mental processing speed (eye-hand coordination) was impaired — slower or essentially normal. I also hoped that playing this computer game was helping me reroute the necessary “nerve connections.”

At one point, my physical abilities were so impaired that I had difficulty washing my hair in the shower. However, playing the computer game, I did not have to use exaggerated physical motions or have much strength in order to play this computer game effectively. It was impacted by reaction time not physical strength. I could even tell that hitting the ball to the left bottom corner was often less accurate than hitting it anywhere else. It became an indicator of the current level of dysfunction.

Not too surprising to me is that an October 2014 study at Florida State University (FSU) found cognitive gains after 8-hours of playing a video game as opposed to NO gain after 8-hours of using Lumosity. [click here]

Even more interesting, there are also proven gains from social interaction. Yes, getting together with family, friends, or other men who have MS are the kind of social interactions that help. For the latter example, that interaction provides an emotional environment with other men who probably have the same anxieties, reactions, and avoidance strategies as I.

http://www.everydayhealth.com/multiple-sclerosis/emotional-cues-may-be-lost-on-multiple-sclerosis-patients-researchers-say-2159.aspx

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2528238/

Mood & Cognition in MS

Often we assume those close to us intuitively know what is happening to those of us with multiple sclerosis.  Wrong.  Even those with MS do not always realize the impact on daily living!

I encourage everyone with MS and everyone who cares for or about someone with MS to watch the video, “Mood & Cognition in MS: What You Can Do,” produced by the National MS Society.  [Click here]

Mood and Cognition in MS

 

Colorado’s Xcel Energy Medical Exemption Program 2015

70/Four70 Men's MS Support Group

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)…

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MS Brain Fog – huh, what?

I accidentally ran across this “MS Brain Fog” blog posting and think it is “worth repeating” in the Denver MS Men’s Group blog. Yes, it was originally published in October of 2013 but it continues to be relevant and the fact that it was written by a female in Canada is irrelevant!

MS Means...Living and Laughing with Multiple Sclerosis

“They are able who think they are able.” ~ Virgil

Image Source: http://www.ms-uk.org/images/uploaded/cog.jpg Image Source:
http://www.ms-uk.org/images/uploaded/cog.jpg

“Huh? What?”

Sometimes that seems to be a phrase I say way too often.

Now – I consider myself very lucky in my MS – because, while I have some serious symptoms such as seizures, chronic pain, and chronic fatigue, I am still quite physcally able. That said, I do have cognitive issues as a result of MS that affect considerably how I live, adapt, work. For me (and many MS’ers) – MS manifests iteself in a way that is mostly invisible to the every day eye looking in from outside.

Many of us with MS experience some form of cognitive issue. The National MS Society reports the following:

In MS, certain functions are more likely to be affected than others:

  • Memory (acquiring, retaining, and retrieving new information)
  • Attention and concentration (particularly divided attention)
  • Information processing (dealing with…

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Perspective

At the beginning of January I lost a friend to ALS (a quickly disabling degenerative disease) and it was a sad reminder of life’s cruelty as well as its blessings.

Yes, I have multiple sclerosis and I do not wish it on anyone.  But my childhood friend, Jim, suffered greatly and far more than I want to imagine.


We too often wallow in self-pity: Jim Gardner with keyboardsThen an event occurs that snaps us back to reality.

I lost a good friend to ALS the third day of 2015.  Amyotrophic Lateral Sclerosis (ALS) is often referred to as Lou Gehrig’s Disease.  A humble and often self-deprecating man, Jim Gardner was an intelligent thinker and excellent musician.

As fellow musicians, Jim and I attempted to become a two-keyboard rock band in the late 1960s.  We performed publicly only one time — in the Auditorium of our High School. The concept failed.

In the early 1970s, Jim was deep into the music of Pink Floyd and the orchestral and theatrical “feel” of their music.  That style did not fit well into the dance scene of the time but that did not deter Jim from publicly performing that type music.  Jim played in numerous local bands throughout his life.  When the 60’s & 70’s local band, The Elements of Time, reincarnated itself with the late Kent Stembel at the helm, Jim took over my spot at the keyboards and the band continued to thrive for several years.

When his dad was in the hospital, we tape recorded “When the Saints Go Marching In” on our clarinets for private playback in an attempt to cheer up his dad.  It was intentionally bad and I think met our goal of bringing a smile to his dad’s face.

During one of our marathon two-keyboard living-room practice sessions in 1969 or 1970, Jim cracked me up by suddenly reciting comedian George Carlin’s “Hippy Dippy Weatherman” routine from memory.  He must have gone on for 10 minutes and got it right — word for word.

It seems appropriate to quote Carlin from that weatherman routine:  “Tonight’s forecast: Dark.”

Rest in peace, Jim.

Lost Cause?

There are seemingly countless tear-jerking PSA type television solicitations by legitimate charitable organizations imploring us to give them our money.

This was not just around the Thanksgiving through New Year’s Day time frame but year round.  I am specifically referring to those incredibly long ads that last perhaps five minutes or so and not just on late night TV.  You know, the ones that provide a good time for a bathroom break or to go to the kitchen for a snack.  And there is no worry about being rushed or missing something.

Is this over-saturation actually desensitizing us and making it less likely for us to support important causes?  It is not unlike someone who uses way too many exclamation points when they write.  It becomes irritating to the reader and the message lost.

Like walking down a street filled with LED signs that advertise a variety of products and events: The visual clutter is so overwhelming that almost nothing reaches your brain in a way you can actually sort out, comprehend, or remember.

I am not heartless but I rush and fumble to turn off the sound every time I see a person with watery red eyes choking back the tears while describing the plight of some person or animal.  These are repeated so often that within a split second I know I am about to be subjected to the appeal.  These are worthy causes but I am suggesting the approach is shameless and certainly on me, having the opposite impact from what was intended.

So are the charities losing?

BTW: You know the ads to which I am referring. But if not, “never mind.”  (A la the late Gildner Radner’s Emily Litella from Saturday Night Live.)  See Radner’s Litella at http://vaviper.blogspot.com/2014/04/i-finally-located-video-of-gilda.html

p.s. To top off this, at least one for-profit company now utilizes crying in its ads to coerce people to purchase their product.  I refer to Life Alert ®

How do we know?

A recent Biogen Idec email about multiple sclerosis posed these questions:

Question“Have you had a flare-up in the past year? Do you feel that your physical disability is progressing? Has your MRI shown increased lesion activity? Are you unable to tolerate the side effects of your current therapy?”

All important questions and questions we should ask ourselves periodically. If the answer is “yes” to any of these, it is crucial to discuss and review your MS therapy with your neurologist. The therapies for MS are broad in scope and constantly changing and improving.

YOU are your best advocate when it comes to your health.


When Great Has No Meaning

If you ever gave a formal presentation to a group, it is quite likely someone told you that when a person in the audience asks a question, you should reinforce this courageous act by saying “That’s a great question!

stair damageAs Gail Anderson states in her blog, Applause, I believe most people are actually saying “‘that’s a good question’ to buy a little time to think about [the] answer.”  It is a process like climbing stairs with MS: one agonizing step at a time — if it can be done at all.  Saying “that’s a good [or great] question” has become a public speaker’s standard acknowledgement and now all too commonplace, trite, and does not impress the audience.

The next time someone asks “how are you feeling,” should you say “that’s a great question” or immediately begin relating your medical history? For most people, this is a perfunctory question and any answer other than “okay” or “I’m holding my own” is not expected OR wanted.

However, if this is asked during a medical exam, then by all means, “spill your guts!”

The caveat to this is hearing “that’s a great question” from your neurologist. If they do not expand on that, it could actually be an expression of “oops!” Not in every instance, but generally, we want our doctors to know the answers – inherently and instinctively as a result of their education.  After all . . . they probably have an ego “great” enough to accommodate such a belief in infallibility!

The Not-So-Invisible Man

Men can have an especially difficult time disclosing a diagnosis of multiple sclerosis. Outside of simple pride, there are good rational reasons to be wary. However, if a man shares this very personal information, he undoubtedly still tries to downplay the whole thing and not make it a “big deal.”

A worried man It is not uncommon for anyone — especially men – to disguise the impact(s) of their MS for as long as possible.  It becomes problematic when it is obvious to others that something is wrong; such as when he begins dragging a leg as he walks down the hall or to his auto:  An obvious indication of a seemingly common and minor problem.  Maybe he can let people believe it is “the result of a sprain caused on the basketball court in a pick-up game with other guys” but that is not the only issue.

Less obvious are maybe he is also having trouble focusing his eyes to read the computer screen and is not able to sign his name because he cannot grasp and hold a pen. It is . . . well . . . mildly upsetting if not exasperating and almost certainly noticeable to others.

The dilemma develops into choosing between disclosing the disability while downplaying the impacts of his MS or simply not telling anyone and hiding it.  “Yes; that will work” – for a while.  MS will eventually and perhaps dramatically impact his work-life.  MS rarely, if ever, stays hidden from others for life.

The key to moving forward is to STOP IT!  Quit denying the MS diagnosis and start dealing with it.

Choices in life are rarely black-and-white and as of today, there is no cure for MS.  The impacts and etiology of multiple sclerosis are different for each person.  No two people have the exact symptoms: Similar and overlapping symptoms but not the same. MS follows a bizarre and unique course in each person.  The relationship of Mars to Venus only complicates things.  (See author John Gray.)  Women and men view life differently.  Suggest to a man that he should join a support group with both men and women and he probably refuses or at least goes reluctantly then begrudgingly and finally stops going.  A man often finds these groups as nothing more than an irritating whining session that only adds to his frustration: Besides, “a man does not need a #$@&%*! support group!

This is simply the wrong way to address it.  A male needs a different approach to coping.  Who can most effectively help a man deal with MS?  Other men with MS.

On the 29th of September in 2012, this MS men’s group and the Colorado-Wyoming Chapter of the National Multiple Sclerosis Society sponsored an event for men with MS called “Kicking at the Uprights: the Male MS Challenge.”  It was for males only who have MS and held at Sports Authority Field at Mile High in Denver, CO.  Sports psychology consultant, corporate coach, and a man with MS, Jack H. Llewellyn, PhD., was the keynote speaker.

Drew Litton cartoon "Killer Uprights" and KatU event symbolWhy that name?  “Kicking at the Uprights”  illustrates our daily struggles with multiple sclerosis: Some days we kick the ball and make the field goal.  Some days we kick the ball and it seems there is nothing but uprights in our path.  And for many of us, there are way too many days we aren’t even able to kick the ball.

Whether or not the men attending the event found the program and speaker helpful, they probably found being where the Broncos play and getting their picture taken on the field a rejuvenating experience.

The bottom line is to keep from stewing in your own shell.  Get out and about with other men; other men who have MS. Living well requires more than what you put in your body. It is what you put in your mind, as well.

We would like and appreciate your input.  Please select all that apply and comment if you would like.

The Sad State of Healthcare Insurance

A CAUTIONARY TALE.

FrustratedAfter 3 years of temporary positions and financial struggling, Mary’s spouse just started a full-time job with good benefits.  Now, they must quickly determine if they want to eliminate their Medicare Part “B” and “D” coverage and take advantage of one of the company’s insurance plans.

They are able to make this change because the new job is a “qualifying life event” and if they decide to take one of the company’s health insurance plans, they will have “credible coverage” health insurance; thus allowing both to discard their Medicare coverage without penalty.

The new employer offers plans from two major insurers which, if purchased, must be secured by both the employee and spouse as a prerequisite for obtaining one of the company’s dental and vision plans.  Currently, both are on Medicare Parts A, B, & D with a supplemental plan but have no dental or vision plan.

The dilemma is broad but in simplistic terms, they have been tasked with understanding the impacts of:
1.) the insurance they have now, versus
2.) the insurance now available to them;
While determining:
3.) what insurance they need,
4.) what, if any, changes they should make, and
5.) who can sort it out for them without charging a fee or expecting a commission?!

Number five is apparently an insurmountable challenge.

In the process, Mary discovered that no one provides impartial decision-making assistance in a meaningful way unless Mary already understands what to ask, what is offered, and what is needed!

Mary and her spouse found themselves simply blankly staring into space after trying to understand!

An insurance broker will NOT make a commission on them, so why help? And why would they want to insult the broker by asking for help?  Colorado’s Senior Health Insurance Program (SHIP) is willing to check and has checked into some of the issues, but its well-meaning and friendly volunteers do not have the full capability/knowledge to assist in making comparisons, advising us on the questions to ask, and ultimately making policy selection suggestions.  The Medicare staff provides all the government’s information but certainly cannot guide or steer anyone in any particular direction.

A variety of people willingly provide information, but do not study individual needs and offer recommendations.

The investigation into health insurance — even at a basic level — seems to be a task more appropriate for a person with an advanced degree in public policy and finance in order to intelligently sift through the myriad of what-ifs in an attempt to make an intelligent selection/decision.  In short, choosing health insurance has become the biggest legal gamble outside of Las Vegas.  Those faint-of-heart or ill-equipped to juggle and sort out the complexities should not attempt to make the journey.  How in the world do people with cognitive issues and/or limited financial capacities deal with this?!

Mary assumed it would be mildly complex but thought she had the ability to navigate the mess: but she was wrong and the Affordable Care Act has made it worse.

Healthcare has become so complex, we have not been able to effectively sort out the benefits we need and/or should obtain or drop.  Mary feels “it is as though we are left to fend for ourselves with no guidance beyond the admonition ‘caveat emptor.’  It is discouraging, if not irritating, and an affront.” She has wondered if they should just obtain the minimum plan at the least cost that offers the fewest benefits and take their chances.  Then again, perhaps a monkey throwing a dart at a chart of plans is as effective: It could not be any worse!

There is apparently nowhere to go for the hand-holding help Mary needs and she is frustrated and miffed. She is probably not alone in this dilemma.


Note: This above tale is based on a real example but some identifying facts have been altered or left out.

Impact on Mobility – Equipment Repair

70/Four70 Men's MS Support Group

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…

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CO 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.

Small Town Past

The following has nothing to do with multiple sclerosis but it brought a big smile to my face and a little laughter: something we all should do from time-to-time!

Except for the photograph, this is from a real-life news article of May 12, 1960, as reported in the Benton Review newspaper in Fowler, Indiana: a town of around 2,500.

“Tuesday evening about 7:30 o’clock, an explosion that could be heard all over town created a lot of excitement until an investigation was made.

The investigation by the Sheriff’s office, Town and Sherman tankState Police disclosed that a group of men had fired an aerial bomb from a 3-inch cannon mounted on a WWII Sherman tank that is situated on the lawn at the VFW home on the northwest edge of town.

The bomb, loaded with 8 ounces of TNT was placed in the muzzle of the cannon and touched off by one of the group of men.  It first hit a slight embankment across the street west of the VFW home and then ricocheted slightly to the south and exploded in the yard of the Roy Berry home, about 300 feet west of the cannon.

The resulting explosion shattered the south windows of the concreted block home, ripped off a board of the gate, and damaged paint on the outside wall.  There was a 5-inch hole in the ground four feet inside the yard, 5 feet from the home.  Fortunately, the Berry family escaped injury.  Shattered glass from a window was blown into the bathroom by the explosion.  The cannon was pointed slightly downward, but had it been elevated a foot or so, the bomb would have struck the house broadside.

It is reported that a grand jury may be summoned to make a detailed investigation of the incident.”

Ahh, life in a small town in 1960!  If you doubt that towns really existed like Mayberry as portrayed in TV’s “the Andy Griffith Show,” perhaps this article is “proof!

In today’s environment, an event of this kind would have definitely made the national news, countless blogs, instigated some legislation, and perhaps incurred an intensive inquiry by the FBI, DEA, and other three-letter agencies.  A stupid and dangerous prank?  Yes.

But today, I hope it brought a smile to your face.
🙂

What in the World Will You Do?

What do I do?Imagine this:

Over the weekend you had a strange numbness-like sensation on the entire left side of your face and head.  It was puzzling but you tried to ignore it thinking it would go away.  It did not.  So, on Monday you called your family doctor and got an appointment for the next day.

The day of the appointment, the doctor makes some basic observations, draws blood for a lab test, talks with you about what you have been experiencing, performs a limited physical examination then sits down next to you.

He looks you straight in the eye and says “I would not say this to most of my patients but you are not the kind of person who freaks out over things like this.”  Evidently he has not-so-positive news to share!  “It could be caused by a number of things and among those is MS.  I’d like you to see a neurologist.

He is correct.  You did not freak out.  You did not even flinch: although you find yourself a bit perplexed and somewhat confused.  Yes, you think you know what MS is.  It is Jerry’s Kids, right?

You go home and have very little, if any, discussion with your wife about what the doctor found out about your health.  That evening you realize MS is multiple sclerosis.  Jerry’s Kids have muscular dystrophy.  Still, you know virtually nothing.

Before seeing the doctor you had searched through the hidden recesses of your mind in a fruitless effort to explain the cause of this malady.

THE UNEASY SEARCH FOR THE CAUSE

AsMosquito a kid in the summer, you had often ridden your bicycle – weaving in and out – behind the slowly moving truck that was spraying to kill mosquitos with a DDT fogging machine.  Had that messed with your immune system?

Was it that weed killer you spent last weekend spraying on the lawn?  Was it the afternoon you spent in the closed-up garage brushing on that semi-gloss varnish finish on the jewelry box you made for your mother-in-law for Christmas?

What is this?!

TAKING ACTION

Your next concern is to determine what to do.  Sounds simple but this is the on-ramp and you are hesitant to enter.  You can research multiple sclerosis on the web but if you do, will you start to imagine all sorts of symptoms because you read about these?

You think you can ignore the doctor’s potential diagnosis since you really do not seem to be impacted much at all: you have not experienced any “disability” and there is no set pattern of symptoms or a progression of symptoms.  It is probably not MS, although you know virtually nothing.

Then you see the neurologist and an MRI of your head and neck is ordered.  Soon after, the report comes back to you that your brain has several lesions (white spots) – all of which indicate the possibility of multiple sclerosis.  The neurologist describes to you the myriad of treatments, the drawbacks and benefits and asks you to think about which of the drugs you might be most willing to try.

Do you want a daily injection?  Would you rather have a monthly infusion?  How about a twice daily pill?  There are more options and none are good from your point of view.

Holy Grail knightIn a scene from the 1989 film, Indiana Jones and the Last Crusade, the knight guarding the Holy Grail says first to Walter Donovan, “You must choose . . . but choose wisely.”  Determining what you should do: what – if any – medication to take is perhaps the most perplexing and frustrating point in this journey.  You are alone in this decision.  The doctors, your family, your associates, everyone has an opinion but no one has the definitive answer.  You hope to hear from the knight (doctor) that “you have chosen wisely.”  Unfortunately, Donovan “chose poorly” and his “skin turns brown and leathery and stretches across his bones until it splits.” [See www.theRaider.net]

Yes, this is the dilemma.

THE REALITIES

MS has no cure but there is hope that you can impact the course of the disease – especially the relapsing/remitting form of MS.  When taking any of the FDA approved MS medications, it is unfortunate that all the manufacturers can only assert that those who take the medication have “fewer MS relapses than those who took an inactive placebo.”

Really?  That’s it!?  A discouraging fact when you think about it but encouraging if you think about it longer.

It is true that at least one FDA approved drug (Tysabri) does carry the risk of contracting progressive multifocal leukoencephalopathy (PML), if you already have the JC virus (JCV.)  However, unlike Walter Donovan, the decision to embark on an FDA approved treatment is extremely unlikely to cause you to shrivel up and die!

The bottom line: Each of us has a different path and course of action to take in managing multiple sclerosis.  There are no pat answers.  What you experience will be similar to what others experience BUT it is unlikely that anyone else shares all of your symptoms and experiences.

Your MS is as unique as a fingerprint.  The treatment that works for you might negatively impact someone else.

It is yin and yang and a reason to be hopeful.
Yin and yang

NOTE: The above posting is based on a compilation of the experiences of several people with MS and is not an exact recounting of any actual event.

Positive Thinking

worried manThere are people who believe negative thinking has no impact on their health and the lack of belief in God is irrelevant.

Really?

In a “YouBeauty” blog posting by Deborah Dunham on 26 January 2012, she reported on three studies published in the Archives of Internal Medicine and funded by the National Institutes of Health: “Patients were encouraged to think of ‘positive affirmations’ or small things in their lives that made them feel good when they got up in the morning and throughout the day, or self-affirmations for previous successes when faced with obstacles that might interfere with their health (like an unwillingness to exercise when it was cold outside) . . . For those practicing positive affect and self-affirmations, the researchers discovered an improvement in healthy behaviors. . . This simple approach gives patients the tools that help them fulfill their promise to themselves that they will do what’s needed for their health.

As reported by Lisa Miller, Ph.D., of Columbia University, New York, and colleagues, their study regarding the importance of religion or spirituality to a person: it appears it is closely “associated with the thickness of certain brain regions.”  (See JAMA 25 December 2013)

The “. . . findings indicate that importance of religion or spirituality, but not the frequency of church attendance, was associated with thicker cortices in some regions of the brain, independent of familial risk for depression.

Further: “Although a high frequency of attendance at religious services was associated with a high personal importance of religion or spirituality, the association between attendance and cortical thickness was not significant . . .

According to a 28 April 2013 report in the Huffington Post on Believing in God Associated with Better Psychiatric Treatment, a study at McLean Hospitalfound that people who said they believed in God had better chances of responding to their psychiatric treatment, compared with non-believers.

It would be astonishing if simply “wishing something to be” would result in making it actually happen and in no way should positive thinking be viewed as a curative therapy.  However, positive thinking greatly enhances and aids health by making it more likely that a person would take action rather than passively allow their health to decline without intervention.

In a related personal experience, as an undergraduate enrolled in social psychology at the University of Cincinnati, I was required to be a “guinea pig” in thesis studies for Psychology graduate students.  I participated in one study that the gist of it was to determine if the mind could overcome pain.  I do not recall the title of the study.

ice cubesI was instructed to sit in a tablet arm student desk and place my right hand in a tray of ice.  I was to leave my hand in the ice as long as I could tolerate it.

I did not last very long: I probably had my hand in the ice for well less than 5 minutes.

After taking my hand out of the ice, the grad student gave me a warm towel to wrap around my hand and queried me for a few minutes about the intensity of the discomfort and so on.  He then unwrapped my warmed up hand and instructed me to again place it into the ice but to close my eyes and “think about being on a warm sunny beach” and other such nonsense.  As he was giving the instruction, I could not help but think “this is stupid.  That won’t work.  I’m going to think about how comfortable I am and that my hand feels really good.”  I also slowed my breathing to a regular and calm pace.

After perhaps 20 minutes – again I do not remember how long – the grad student told me to take my hand out of the ice.

Without opening my eyes, I calmly and simply informed him I was fine and did not need to remove my hand.  But he admonished me stating I would “have skin damage if I left my hand in any longer.”  What?!  Although I had my hand in the ice for a good long time, I never felt pain or uncomfortable.

The grad student was perplexed and astonished with a restrained but excited look on his face.  I am certain he was thinking his technique was more effective than he ever expected.  I never told him how I altered what he instructed me to think about.  However, I learned about the mind’s power to alter reality:  A power to use as an aid in motivating ourselves to attempt to improve our condition by not anticipating a negative outcome.

It is vitally important to believe in our actions when it comes to health.  Half-heartedly believing a treatment might help can easily doom the treatment to failure.  Belief in the treatment is as important as the treatment itself!  As evidenced by the impact of the placebo.  See the 8 January 2014 article, “Placebo Effect May Account for Half of Drug’s Efficacy” by Bahar Gholipour, in Live Science.

Positive thinking DOES make a difference in our mental and physical health.  Try it.  Other than being wisely cautious, nothing is gained by being negative.

Questions man

Happy New Year But Goodbye

escher's tower of bableWhen multiple sclerosis forced me out of the workforce, I was appropriately worried about our future.

For years I had tried to work around and “gut out” the physical and mental impacts.  It was admirable but fruitless.  My physical abilities were increasingly debilitating.  Plus, having Relapsing / Remitting MS, it is impossible to predict when I will either be less able or more able to do anything!  My cognitive abilities were so impacted that many neural-pathways have never successfully redirected themselves.  Fatigue only triggers these impacts.

The financial effect made me feel helpless and the economic condition of the US hastened the negative consequences.  It created even more worry.  To top it off, all of the MS medications approved by the FDA can only assert that people who take the drug have statistically fewer exacerbations than those who do not take any drug.

What was I going to do?  How would I pay the bills?  These seemingly rhetorical questions seemed almost sophomoric: but how do I survive without losing everything?!  There is no cure for MS.

I tried keeping engaged by producing this blog.  It only turned out to be a place to vent “publicly.”  I had hoped to foster back-and-forth communication.  It did not happen.  Was that what I wanted, needed or even intended?

No.

So, MS has poignantly prepared me to accept the reality that this blog has come to the end of its life.  It should not have been a surprise to me, yet it was.  I had hoped other men with MS might actually enjoy the opportunity to exchange feelings and thoughts.  I should have known better.

I know, shocking: Men generally do not find interaction via social media all that enticing; with the exception of titillating content — hmmmm  We men grimace at the thought of exposing our emotions to others.  We are just fine keeping our thoughts to ourselves.

Then came the reality.  Writing on a consistent basis for a Social Media blog is demanding work.  Often, too much work (stress) for a person with MS; my foggy brain had trouble maintaining focus.  Was I being clear or obtuse?  Do I publish it before I lie down?  Should I wait a day or two?  Was I publishing a post in haste?  Can I even summon the energy to log off?   Under the best of circumstances a blog easily becomes unwieldy and overly complicated to maintain . . . and forget about promoting it.

This blog was intended to be a vehicle for men with MS more than my personal outlet for espousing my views.  Hopefully other men would take charge and publish their posts on the blog the NMSS Chapter helped me to produce by paying for its registration.  Instead, I found I was under a self-imposed pressure to write and immersed in stress!  Writing something interesting was my noble goal but not my prerequisite.  In the end, it proved to be a forum for my babbling.

So, on this last day of 2013 . . . I sincerely wish you a Happy New Year.

Mistletoe

“Vaccine” for Multiple Sclerosis?

English: The tip of a hand-held bifurcated nee...Incredibly, I read the headline over two weeks ago but neglected to read the article until today.  “A preliminary study has found that a vaccine may reduce the risk of multiple sclerosis (MS) in people who have beginning signs of the disease. About half of people who have had their first episode of MS go on to develop full-fledged MS in two years, while 10 percent will have no more MS symptoms.

It goes on to say “After the first six months, those who received the vaccine had fewer brain lesions than those who got the placebo, with an average of three lesions for the vaccinated versus seven for the unvaccinated.

Laurie Tarkan at FoxNews.com reported this on its website 18 days ago!  Click here for the link.

As with most MS research, the potential usually is hype and out-promises the reality.  Still, there is hope and without research there is absolutely no movement toward a solution.  This is supported by the study’s author, Dr. Giovanni Ristori of Sapienza University in Rome, who said “These results are promising, but much more research needs to be done to learn more about the safety and long-term effects of this live vaccine,” said Ristori. “Doctors should not start using this vaccine to treat MS or clinically isolated syndrome.”

Although I have a “healthy” fear of MS impacts, I still have hope.

 

 

Social Media and Guys with MS

You know, it is possible men with MS just do not respond to blogs well.  But, I tried it, it fizzled out and did not work.  Regardless, have a merry Christmas.

This blog (denvermensgroup.com) will cease to exist as of 10 January 2013.

Merry Christmas to All . . .

Denver City and County HallThe Denver MS Men’s Group blog is near the end of its internet life.  However . . . for it to survive, please speak up before 9 January 2014! 

Hey, it is free to you. Enter your thoughts from a full-page to only a couple of words.  If you celebrate Christmas, let us know how.  No need to write a lot, we just want to know that you are there!

Write about:

  • MS,
  • what Christmas means to you,
  • your kids/grandkids,
  • your pets.
  • the cold and snow,
  • the snow fort you built,
  • your hopes,
  • your successes,
  • Santa Claus.
  • your letter to Santa Claus
  • the worst Christmas present you ever received.

WRITE.English: Photo of Jonathan G. Meath portraying...

ACT UPdate 2

I don’t know if anyone is still reading this blog or not but . . .

Just in the last week or so I am noticing more and more that the cognitive problems have lessened some. I’m finding out the Brain is a wonderful thing when it works!

I am 10 weeks into the Advanced Cell Training (ACT) program and my energy continues to improve: this week I’ve only had to take my baby nap once without increasing my sleep at night-time!  The Herxheimer (herx) reactions are still apparent however, no pain no gain I say!  My biggest concern is getting your attention before it is too late my friends!

To your health!

“See what you have done.”

Elvis PresleyA 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.

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, Illinois.

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.

The lyric “see what you have done” (from C. C. Rider) stuck in my mind.  I could not shake free 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!

The Value of Patience

Over the last few months I have too often heard a man with MS who is still working say “I am afraid to go on disability: I don’t know what I would do with myself.”

Interesting comment since the reasons for going on long term disability are broad and encompass cognitive and physical functioning but above all, safety.  Attempting to use a footstool to reach the top shelf of a kitchen cabinet is generally unwise if not impossible.  Our big desire seems to be to have “value.”

BoredomBoredom is definitely an issue to resolve and cannot be simply shoved aside, but so many of us are less multidimensional than we believe.

Reading a book (hard-copy) night be an unpleasant tactile experience due to heightened sensitivity and even the ability to grasp and hold a book.  Focusing the eyes can get in the way while focusing the mind can be even more frustrating.

From a blog posting in 2009 “Jughead” said “. . . For me it [boredom] usually stems from not being able to do what I want, and though similar to a tantrum, this differs because it is more about disappointment. I can’t come up with what my niche should be, one I’ve been trying to figure it out since childhood.

I can no longer use a hammer or a table saw.  I am unable to think clearly enough to write (not handwriting but typing) anything comprehensive AND if I finally do, it takes hours if not days to complete.

The key is examining what you CAN do and re-routing your expectations.  Have patience.  Taking small steps can also provide immediate gratification. Try it rather than expecting to attain lofty goals only to fail and result in giving up.

The value of patience has become clearer to me now that I have multiple sclerosis and I have learned I must redirect rather than despair over loss.

I cringe at the concept of a need to be GIVEN empowerment since we are all born with the power. We — yes “we” — are the only ones who can use the power. Read Top 5 Words to Delete from Your Vocabulary in Jeff Moore’s blog “everydaypowerblog.com.”

Patience is the companion of wisdom.”  Roman Catholic Saint, Saint Augustine.

Shutting the Door

Due to an apparent lack of interest/participation, this blog (DenverMensGroup.com)

closing doorswill no longer exist after January 10, 2014.  However, if you think it is important to continue this blog, please comment and make postings.

Thank you to everyone who did participate!

ACT UPdate

Looking back at my records, I have now completed 7 weeks of the Advanced Cell Training (ACT) program.  I was encouraged to read of others who said they started feeling a slight increase in their energy about two months into the program. That has started happening for me just in the last few days.  In fact, the herxes diminished this past Friday from my last treatment on the prior Sunday.  Not only was my energy increased but I just felt good for a change. My headaches have subsided and now, if only the fog bank in my brain would just roll back out into the ocean! I have not felt this hopeful in a longtime.  While this program is baffling to me in how it works, it IS working. Stay tuned as the updates are just going to get better and better!

The Challenge of Unscrambled Thinking

Publishing a blog is no guarantee it will be read and a probable fruitless endeavor.  While providing a venue for the exploration and expression of thought, blogging is often an intimidating undertaking.  This simple posting took several sittings and days to create and I continue to edit it.

Don Quixote headMultiple sclerosis can cause cognitive complications with no limits that embarrassingly and unceremoniously stop a person in mid-thought.  Like standing in a field of butterflies, much of the time I have a horde of thoughts haphazardly floating around in my head.  As quickly as one is captured, it escapes.

When I begin processing a thought, another thought barges in, rudely shoving the prior thought out the door and beyond reach.  It is excruciating and I have come to appreciate the unfulfilled determination of the frustrated Don Quixote.

Altruism aside, I blog as a result of a pesky belief that if I just write things down, it will put me on a therapeutic path to retain as much cognitive capability as possible: An organized and methodical documentation of soul searching akin to the ubiquitous “sorting things out.”  An unscrambling.

One conventional therapy to battle the loss of mental capability is the use of Lumosity.  “Lumosity is based on the science of neuroplasticity, the idea that the brain can change and reorganize itself given the right kinds of challenges,” said Erica Perng, Lumosity’s head of communications for an article in “The Guardian” by Elizabeth Day, dated 20 April 2013 and titled “Online Brain-training: Does it Really work?

I use Lumosity . . . when I remember . . . but have found Wii Tennis, Bowling, and Golf to be more effective at trapping my interest.  Lumosity exercises are too frustrating and irritating to be helpful.  I get upset with it.  However I must admit, as much as I despise Lumosity’s mathematics exercise, I do like and am motivated by its word creation exercise .  (I was slow at math long before I was diagnosed with MS.)

Sudoku is not at all intriguing or enticing to me.  Yet, it is another “therapy” for exercising the mind to rebuild connections and there are those who use and enjoy Sudoku’s challenge.

For years I have “intended” to begin Tai Chi but have yet to summon enough discipline to get beyond the introductory section on the Tai Chi DVD.  With its slow movements, it seems to be a more MS-friendly exercise than Yoga since it can even be done sitting in a chair.  Yoga’s physical contortions can be painful for a generally healthy individual of moderate physical ability.  It is virtually impossible for a person with limited flexibility/mobility.  Egad!  Maintaining a position with spasticity?!  So . . .

  • How do YOU handle this too often dismissed malady of the multiple sclerosis mind?  (Say that fast three times!)
  • How do you manage the brain’s wrath and rebellion when it comes to your MS cognitive issues?
  • Would you say you have a form of Pseudo Bulbar Affect?

MS Trigger May be a Common Soil-Based Pathogen

This is one of the very few MS research studies I have found to be truly promising and, yes, even exciting!

A bacterium has been identified by a Weill Cornell Medical College and The Rockefeller University research team that it believes may trigger multiple sclerosis.

PLoS: The Public Library of ScienceAccording to an article published in PLoS ONE, (a peer-reviewed, open-access resource from the Public Library of Science), this study is the first to identify the bacterium, Clostridium (C.) perfringens type B, in humans.  The study’s senior investigator, Dr. Timothy Vartanian, said “While it is clear that new MS disease activity requires an environmental trigger, the identity of this trigger has eluded the MS scientific community for decades.”

Almost immediately I wondered about a potential connection to the 2011 work supported by National Institutes of Health grants that genotyped components predicted to play a role in MS etiology and revealed significant associations to MS.  [Click here]  Is there a genetic component that makes some people more susceptible to this bacteria?

This might be a leap in conclusions and I AM a medical lay person.  However, connected or not, these two studies hold what seem to be real promise toward the discovery of the cause(s) and treatment of MS.

I also published this in the 70/Four70 blog.

Be sure to read the October 16, 2013, article on this investigation at the Weill Cornell Medical College website.  http://weill.cornell.edu/news/releases/wcmc/wcmc_2013/10_16_13.shtml

Update on My Experience with Advanced Cell Training (ACT)

While my Herx side effect reactions are slightly lessening along with my headaches, Monday was the first sign of real progress as my energy has significantly improved!

While on a normal day, my energy — on a scale of 1-10 — is generally about a 9.  Monday was closer to a 6 or 7.  Each little step in my journey I’ll report in a timely fashion!  Sorry I was so slow this time to post an update and profound statement with all my words of wisdom!
;)

My Experience with Advanced Cell Training (ACT) part 1

Started the Advanced Cell Training program (ACT) on the 17th of last month and have been fascinated by it: so far it’s amazing.  See BBB report on ACT.Advanced Cell Training logo

For a person who is used to a Rife Machine with some degree of success in the past, I understand the effects on the body after killing off bad pathogens in my body.

Called Herx reaction — short for Herxheimer reactions — the Herx gives a person the same reaction on our bodies as Chemo or Radiation therapy killing cancer cells for instance. So, having a program that has stimulated my own immune system to kill the bad pathogens in my brain that are causing all the problems I have is awesome.  I have had a nasty stretch of Herx ever since the 20th, but starting to feel some relief as of yesterday afternoon.

The interesting thing with the gentleman who started ACT is he is not concerned if I have MS, Lyme’s, Parkinson’s or Lupus as he says “the body can heal any and all autoimmune diseases.”  I have had one improvement so far and I’ll be very thankful for continued improvement — especially if it improves the left side of my face that went numb in 2006.  That problem was reversed in 2007 along with all of my symptoms while using the Rife Machine.  However recently it was starting to hurt again like it did back in 2005 by feeling like I need a root canal but don’t.

That has already gone away but of course I went to three different Dentists before it came to my fuzzy brain that is not what caused it back in 2005/2006!

More to come as I continue the program . . .

Medicare Sign-Up Assistance Program

English: image edited to hide card's owner name.Via the CO-WY Chapter of the National MS Society’s News to Use:”Medicare Open Enrollment – Part D – October 1 – December 7.  Starting October 1st, people who enjoy Medicare benefits can choose among the various Part D plans.

Now is a good time to start recording all of the medications you need so you can choose the best plan for you. Even if you like your current plan you should check and make sure it has not been modified for the coming year.

In my opinion, one of the most helpful services the Chapter provides is the Medicare Sign-Up Assistance Program.

The Chapter will once again have a Medicare Part D sign up assistance program in the Denver area on November 17th and 18th. Counselors from Medicare will help you choose the best plan available. Registration through our website calendar will be available shortly.”

If you are unable to come to the Chapter office for free assistance go to the following sites by State:

Denver Capital building

State Health Insurance Assistance Program (SHIP) locations in Colorado http://cdn.colorado.gov/cs/Satellite?c=Page&childpagename=DORA-DI%2FDORALayout&cid=1251631731291&p=1251631731291&pagename=CBONWrapper

Wyoming State CapitolWyoming State Health Insurance Information Program
http://www.wyomingseniors.com/services/wyoming-state-health-insurance-information-program

For information on open enrollment for Private Insurance (for individuals and small group employers) go to www.healthcare.gov.  However, I found that site thoroughly frustrating and upsetting.  BUT . . . all is not lost!  The Connect for Health Colorado website leaves an entirely different impression.  I’d definitely check this website for Colorado information and NOT the U.S. government’s site.

Also be sure to go to Colorado.gov/Health’s website www.cohealthinfo.com/. According to News to Use: “The Departments of Health Care Policy and Financing, the Division of Insurance, Public Health and Environment and Human Services have been collaborating on a new consumer friendly website to help direct Coloradans to resources related to health and health care.

The goal of Colorado.gov/health is to help consumers easily find what they need without having to navigate through each of our department‘s websites or understand who-does-what in government to find information. The initial focus of Colorado.gov/health is the Affordable Care Act.”

Healthcare.gov versus Connect for Health Colorado

President Barack Obama's signature on...

The Affordable Care Act (Obamacare) is to begin “assisting” us in obtaining new insurance carriers and/or policies beginning this October 1st. Regardless of Congressional stance I want to be as prepared and informed as possible. So, as I sat at my computer leisurely perusing the Healthcare.gov website, I slowly became upset and frustrated. But, I’m ahead of myself.

Opening the website, I clicked the tab on the top bar, “Individuals & Families,” then I clicked on the “See Your Options” button where I was told to “Answer a few quick questions and you’ll get:” I thought, “jzeesh — I just want to know some simple things. What the heck is this?!” Still, I obediently answered the questions and hit “Enter.”

The site then took me to a page with two inset boxes. On the last line of text in the first box, “The Health Insurance Marketplace,” was an individualized advice/response that read “You may be eligible to get quality health insurance through the Health Insurance Marketplace. But based on the information you provided, you probably won’t qualify to save money on your monthly premiums or out-of-pocket costs. You’ll find out for sure when you apply for coverage starting October 1, 2013.”

What?!? I could not believe what I was reading! I was floored. My body shivered and the hair on the back of my neck stood out. It was reminiscent of Senator Pelosi’s ill-advised justification that “we have to pass the bill so that you can find out what is in it.” Not at all a reassuring statement and frankly, it conveys indifference if not incompetence. Heavens-to-Betsy, healthcare in the United States seems to be in a wait-then-you-better-hurry-up state of disarray: At least the way the federal-government-website-managed-by-the-U.S.-Centers-for-Medicare-&-Medicaid-Services presents it! Even worse, it told me I probably would not qualify, but did not tell me the reason or reasons why and only alluded to my income being too high.

Undeterred, I stubbornly gathered my composure, opened a new browser window, and went to the Connect for Health Colorado website hoping to read something more informative.  To my pleasant surprise, I found a MUCH different approach. Yes! The same bottom line since it too, did not provide the information as I was hoping, but the approach gave me the feeling I was getting the best and most current information they had. Plus, it contained some information I did not know about and was glad to read. I even believed them when I read it was being continuously updated.

I clicked on “What to Expect.” A page opened with eleven bullet points followed by a FAQ link. This info WAS actually helpful! I didn’t feel brushed aside as I did with the dot gov site. Did this website tell me exactly what is happening? No, but it did say “Here’s what you can expect when we open in October” and provided useful information.

My unsolicited advice is to check out Connect for Health Colorado now then “keep your eye on” this Colorado healthcare website. All indications are that it WILL be valuable and will not stress you out, but let us know what you think!

ConnectforHealthLogo

UPDATE
According to a reliable source, the Navigators in Colorado have passed background investigations “and many to most have had previous jobs (i.e. working in county departments of social services or health departments, the VA ) that required background checks and the rigors of security in seeking personal information to process benefits.” Good news for Coloradans.

The Mental Fog of MS

(I also published this on the MS Men’s blog 70Four70.wordpress.com.)

Man thinking on a train journey.

Perhaps the most frustrating issues of MS are I have too often “fallen into” profound fatigue and an unshakable mental fog: A fog that is especially heightened by stress and  mercifully not always present.

Even when I attempt something as simple as shopping, if I cannot effortlessly find the item, I completely and irretrievably lose the ability to focus on what I was doing and the MS fatigue accompanied by a mental fog begins to take me over.  Suddenly, I am not thinking well enough to make any decisions and certainly not able to deal with more than one issue at a time.  i.e.minor multi-tasking.  Yes, that DOES include “simply” having to contend with a shopper blocking my path while I simultaneously try to get out of the way of a different shopper, then going right past the item I needed because I forgot what that item was!

 

Leslie E. Silverman’s article “Lost in Thought: When Cognition Changes” in the Fall 2013 NMSS publication “Momentum” is particularly poignant.

In it, Leslie relates an experience by MS sufferer and Milwaukee attorney, Jeff Gingold, who said “’One day in court I turned to look at my client, and suddenly I didn’t know who she was or why I was there,’ Gingold, now 53, recalls. ‘I didn’t want to make mistakes that damaged my partners or clients. When I left my practice in 2001, I walked out the door physically, but cognitively I still had a real problem.’” [Read more at: http://www.momentummagazineonline.com/lost-in-thought-when-cognition-changes/#sthash.O2ATxt4w.dpuf]

As life with MS evolves, I am consistently confronted these days with strong undeniable evidence that my problem “solving” produces embarrassing moments. It is disheartening and often makes me hesitant or causes me to second guess. My inability to quickly, consistently and appropriately solve problems is all the more frustrating because I eventually – as in a day or days later in a “duh” moment of realization – come to recognize that my initial decision was flawed and the correct/better solution finally comes to mind: the solution that pre-MS I would have my immediately identified and chosen.

My once highly valued and reliable Executive Functioning (the ability to make sound instantaneous decisions) is easily thwarted.  Dysfunctional cognition causes what was almost an automatic decision making process to become excruciatingly challenging.

Silverman continued to write, “. . . these processes become especially challenging, particularly when considering multiple sources of data. Driving, for example, requires you to be aware of traffic signals, other cars, pedestrians, weather conditions, etc., and to use the information to make ongoing, rapid-fire decisions.”

For many with MS, thoughts about again being able to be employed are unceremoniously driven right into a granite wall at 100 miles an hour.  The myriad of MS impacts often includes experiences of feckless failure punctuated by a perplexing inability to remember where we were going or what we were doing or what we were intending to do.  Employers generally cannot tolerate an employee who continuously makes fundamental mistakes and in some cases, these cognitive mistakes could result in a dangerous situation.

Even “reminder” tools such as an MS Outlook calendar entry or pill-minders are useless if you do not remember you have these.  It would not be not uncommon to be reminded of a meeting an hour prior to its start only to suddenly remember it hours later.  You missed it and were completely unaware at the time.

Not All In Your Mind — But It Starts There

Are the impacts of social rejection and physical pain closely related?  The mind-body connection is closer than you might think.

Dr. Andrei Dmitrievich Sakharov

MS very often inhibits or restricts our ability to interact with others – and for a vast number of potential reasons.  It is likely to be more than one.

Apparently the same regions of the brain that become active in response to painful sensory experiences are activated by intense experiences of social rejection.

Activation in these regions was highly diagnostic of physical pain, with positive predictive values up to 88%. These results give new meaning to the idea that rejection ‘hurts.’ They [sic] demonstrate that rejection and physical pain are similar not only in that they [sic] are both distressing—they [sic] share a common somatosensory representation as well.”  (Citation:Proceedings of the National Academy of Sciences of the United States of AmericaSocial Rejection Shares Somatosensory Representations with Physical Pain, www.pnas.org/content/108/15/6270.long)

To read more:
Seating and Mobility Evaluations for Persons with Multiple Sclerosis by Jean L. Minkel, PT, ATP www.nationalmssociety.org/ms-clinical-care-network/clinical-resources-and-tools/publications/clinical-bulletins/download.aspx?id=43941
The Pain of Social Rejection by Kirsten Weir at the American Psychological Association www.apa.org/monitor/2012/04/rejection.aspx
A Quantitative Meta-Analysis of Functional Imaging Studies of Social Rejection by Stephanie Cacioppo, Chris Frum, Erik Asp, Robin M. Weiss, James W. Lewis and John T. Cacioppo at www.nature.com/srep/2013/130619/srep02027/full/srep02027.html
Why a Broken Heart Literally Hurts by Colleen Crawford at Healthguidance.org www.healthguidance.org/entry/15607/1/Why-a-Broken-Heart-Literally-Hurts.html

Skin Patch May Reduce Immune Activity in MS

Since the early days of Political Correctness, people are no longer telling Polish jokes and now scientists in Poland are working on an MS treatment that is truly fantastic and nothing to laugh about.  As reported in the NMSS website on July 9, 2013:

Polish researchers reported results of a small clinical trial in which a skin patch containing myelin peptides (portions of the substance that insulates nerve fibers and is a target of the immune attack on the brain and spinal cord in MS) were administered to 20 people with relapsing-remitting MS via a skin patch, resulting in significant

reductions in disease activity on imaging scans and relapses, compared with 10 people given an inactive placebo patch.

Coat of arms of PolandOver one year, the treatment was found to be safe and well tolerated. Further studies in largernumbers of people are necessary to determine whether this method has potential as a safe and effective treatment approach for people with MS. Agata Walczak, MD, PhD, and Krzysztof Selmaj, MD, PhD (University of Lodz, Poland) and colleagues report their findings in JAMA Neurology (Published online July 1, 2013).”

Click here to read the full article on the NMSS website.

Wisdom from an Old Woman

Written by a 90 year old, this is something we should all read at least once a week!!! Make sure you read to the end.
Old woman's hands tucked between her legs
by Regina Brett, 90 years old, of the Plain Dealer, Cleveland, Ohio.

To celebrate growing older, I once wrote the 45 lessons life taught me. It is the most requested column I’ve ever written. My odometer rolled over to 90 in August, so here is the column once more:

  1. Life isn’t fair, but it’s still good.
  2. When in doubt, just take the next small step.
  3. Life is too short: enjoy it.
  4. Your job won’t take care of you when you are sick. Your friends and family will.
  5. Pay off your credit cards every month.
  6. You don’t have to win every argument. Stay true to yourself.
  7. Cry with someone. It’s more healing than crying alone.
  8. It’s OK to get angry with God. He can take it.
  9. Save for retirement starting with your first paycheck.
  10. When it comes to chocolate, resistance is futile.
  11. Make peace with your past so it won’t screw up the present.
  12. It’s OK to let your children see you cry.
  13. Don’t compare your life to others. You have no idea what their journey is all about.
  14. If a relationship has to be a secret, you shouldn’t be in it.
  15. Everything can change in the blink of an eye, but don’t worry, God never blinks.
  16. Take a deep breath. It calms the mind.
  17. Get rid of anything that isn’t useful. Clutter weights you down in many ways.
  18. Whatever doesn’t kill you really does make you stronger.
  19. It’s never too late to be happy. But it is all up to you and no one else.
  20. When it comes to going after what you love in life, don’t take no for an answer.
  21. Burn the candles, use the nice sheets, wear the fancy lingerie. Don’t save it for a special occasion. Today is special.
  22. Prepare, then go with the flow.
  23. Be eccentric now. Don’t wait for old age to wear purple.
  24. The most important sex organ is the brain.
  25. No one is in charge of your happiness but you.
  26. Frame every so-called disaster with these words “In five years, will this matter?”
  27. Always choose life.
  28. Forgive.
  29. What other people think of you is none of your business.
  30. Time heals almost everything. Give time time.
  31. However good or bad a situation is, it will change.
  32. Don’t take yourself so seriously. No one else does.
  33. Believe in miracles.
  34. God loves you because of who God is, not because of anything you did or didn’t do.
  35. Don’t audit life. Show up and make the most of it now.
  36. Growing old beats the alternative of dying young.
  37. Your children get only one childhood.
  38. All that truly matters in the end is that you loved.
  39. Get outside every day. Miracles are waiting everywhere.
  40. If we all threw our problems in a pile and saw everyone else’s, we’d grab ours back.
  41. Envy is a waste of time. Accept what you already have, not what you need.
  42. The best is yet to come . . .
  43. No matter how you feel, get up, dress up and show up.
  44. Yield.
  45. Life isn’t tied with a bow, but it’s still a gift.

It’s estimated 93% won’t forward this. If you are one of the 7% who will, forward this with the title “7%.” I’m in the 7%. Friends are the family that we choose.

Spin-off Men’s Group: 70four70

70 four 70On June 1 seven men with MS met in the conference room of the Murphy Creek Tavern and Restaurant to organize the 70four70 MS Men’s Group. The men discussed the impact of the disease on their lives, medications and related issues, and agreed to continue the group, meeting monthly on the first Saturday of the month at 9:30 a.m. at the Murphy Creek Tavern and Restaurant, 1700 S. Old Tom Morris Road, Aurora, CO  80018. [map]  All men with MS are invited to future meetings.

The group Facilitator has also participated in the Denver MS Men’s Group, which has met at 11 a.m. on the second Monday of each month in a conference room at Bethany Lutheran Church, Dahlia and Hampden (4500 E Hampden Avenue, Cherry Hills Village, CO 80113), for many years. [map]  All men with MS are also invited to that meeting.

These Men’s Groups discuss all aspects of what it might mean to be a man — with the disease we have in common. In many instances the usual roles of husband/family member, employed individual or bread-winner, maybe even driver, have radically changed. In the open meeting atmosphere of mutual understanding and suggestions for coping, the men in these groups share what’s on their minds and how they’ve dealt with issues raised by others. If you are a man with MS, you already have a membership card, so please join us at either or both of these meetings.

Questions?  Let us here from you at 70four70@weplan.com.

Colorado Legislation Review

Colorado Health Institute logo

The Colorado Health Institute (CHI) was “at the State Capitol all session, listening to committee hearings, reviewing the bills, meeting with Colorado legislators and providing data to inform the discussion.”

CHI released 2013 Legislation in Review: An Analysis of the Key Health Policy Trends that “boils down the 120-day session into an easy-to-read publication that captures the key health policy trends and bills of 2013.”

WEBINAR: To recap the legislative session, CHI’s Director of Legislative Services, Megan Lane, is conducting a webinar on June 19 from noon to 1:00 pm.  You can sign up by clicking here.

CHI identifies four major health policy themes that characterize the bulk of the health care legislation passed in 2013:

  1. Implementation of Federal Health Care Reform: A number of major bills paved the way for the full implementation of the Affordable Care Act beginning in 2014.
  2. Increased Investment in Health Care: More money in the state budget allowed for significant investments in Colorado’s health care system, particularly for behavioral health and oral health.
  3. New Reporting Requirements and Regulations: Several bills aimed to reduce fraud, waste and abuse within the health care system, while others sought to improve transparency and consumer protections.
  4. System Efficiency: A number of bills promoted policy changes that will streamline Colorado’s health care system, setting the stage for future improvements and efficiencies.

The 2013 Legislation in Review report provides details on the major bills within each of these categories, an overview of what this year’s budget means for health care, profiles of key health care leaders at the Capitol and a sneak preview of the policy issues on the horizon for next year.”

About the Colorado Health Institute: The Colorado Health Institute (303 E. 17th Avenue, Suite 930 | Denver, CO 80203) is a trusted source of independent and objective health information, data and analysis for the Colorado’s health care leaders. It is a nonprofit funded primarily by four health care conversion foundations – Caring for Colorado Foundation, Rose Community Foundation, The Colorado Trust, and The Colorado Health Foundation.

Cells Aid In Scar Formation After Injury To Central Nervous System

Reported by the website Medical News Today:

“By monitoring the behavior of a class of cells in the brains of living mice, neuroscientists at Johns Hopkins discovered that these cells remain highly dynamic in the adult brain, where they transform into cells that insulate nerve fibers and help form scars that aid in tissue repair.

Published online recently in the journal Nature Neuroscience, their work sheds light on how these multipurpose cells communicate with each other to maintain a highly regular, grid-like distribution throughout the brain and spinal cord. The disappearance of one of these so-called progenitor cells causes a neighbor to quickly divide to form a replacement, ensuring that cell loss and cell addition are kept in balance.

There is a widely held misconception that the adult nervous system is static or fixed, and has a limited capacity for repair and regeneration,’ says Dwight Bergles, Ph.D., professor of neuroscience and otolaryngology at the Johns Hopkins University School of Medicine.”

Medical News Today  Read the entire article.
Click on: Cells Aid In Scar Formation After Injury To Central Nervous System.

What Drives Repair of Myelin?

Studies Report Progress Understanding What Drives Repair of the Brain’s Insulating Myelin, Which is Damaged by MS : National MS Society.

“Researchers at the universities of Edinburgh and Cambridge, and at Stanford, have reported separate studies making inroads to understanding factors that stimulate the repair of myelin, the nerve insulation that is a target of multiple sclerosis.”

Finally, Meaningful Relief from Tiered Rates

Senate Chamber, Colorado State Capitol Buildin...

Colorado State Senate Chamber (Photo credit: Wikipedia)

On 6 May 2013, thanks to the hard work of CO-WY National MS Society Chapter Executive V.P., Sharon O’Hara, the Chapter staff, and several MS Activists, the 69th General Assembly of the Colorado State Legislature passed into law Senate Bill 13-282 providing clear direction to Colorado’s Public Utilities Commission (PUC) to establish a medical exemption from tiered electricity rates for people with MS and other conditions that cause heat sensitivity.

The bill is now ready for Governor Hickenlooper’s signature and requires the creation of a medical exemption for the Summer of 2014.  The legislation allows the PUC to establish a means test for this specific medical exemption, as long as the income threshold is no lower than 250% of the Federal Poverty Level.

Read more about “Medical Exemptions from Tiered Rates” on the CO-WY Chapter site.

The Trouble with Tribbles. aka Star Trek: Season 2, Episode 15

Negotiating the gauntlet of groundbreaking and beneficial MS therapies is overwhelming if not ultimately exasperating.  It brings to mind the Star Trek episode “The Trouble with Tribbles:”  Tribbles were insignificant cute little creatures that seemed to multiply without end.

After years of being bombarded with the pros and cons of Complementary and Alternative Medicine (CAM) 1 we are now being presented a fresh supply of innovation and discovery: not the least of which are the findings of a link between MS and salt consumption.2

Wasn’t it recently that researchers determined there was a connection between MS and eating saturated fats?3

Well of course salt and saturated fats impact MS!  Give me a break!  Everything we eat impacts MS and our general health.  Medical researchers are trained to believe they can find the solutions to a multitude of physical maladies as long as they employ scientific diligence in their process, but is every sophomoric thought a scientific breakthrough?

When well-meaning and highly intelligent researchers uncover a result that fits their model, they must have a difficult time controlling themselves and not shouting out “Eureka!”  (I have found it!)  Mercifully, there are no reports of any of them running naked through the streets as did Archimedes.  Still, the impatience of scientific research is mystifying.  Yes, impatience.  No, I’m not suggesting further slowing down the release of encouraging therapies.  To the contrary.  I support the prompt release of feasible therapies when the potential points toward reasonable risk: but restrained with the knowledge that it is a “potential” rather than a “promise” of any positive impact or relief.

Reuters reported this past March that “mice genetically engineered to develop multiple sclerosis (MS) got much worse when they ate what amounted to a high-salt Western diet compared with mice who had more moderate salt intake.” 4  A bold statement and not false.  However there seems to be a misleading implication that upon thoughtful examination reveals less about MS than about diet.  It seems the food industry is of putting more and more salt into their processed foods – whether “needed” or not! 5

Many factors impact our health with a multitude of potential results: all based on a person’s genetic makeup, societal influences, climate, medications, and diet.  But humans seem to be on a quest to find a single factor as the sole cause of/for a negative or positive result.

Americans impatiently demand information (news) in headlines.  We do not like to take the time required to read the details.  However the article by the National MS Society regarding the American Academy of Neurology’s (AAN) annual meeting in San Diego this past March entitled Emerging Therapies, Risk Factors and Other MS Research News from American Academy of Neurology Meeting6 makes the important observation that  “In most cases, studies presented are considered preliminary.”

Ah!  So any discovery or finding “could be” beneficial or hogwash.  That is the “Trouble with Tribbles.”7   One provable hypothesis is grand.  A multitude of potential results is overwhelming.  The devil is in the details.

1 What Is Complementary and Alternative Medicine?”  National Center for Complementary and Alternative Medicine (NCCAM) (http://nccam.nih.gov/health/whatiscam)

Sodium chloride drives autoimmune disease by the induction of pathogenic TH17 cells.”  Nature Publishing Group (www.nature.com/nature/journal/vaop/ncurrent/full/nature11868.html)

3 Good News About Multiple Sclerosis: It Can Be Helped By Diet,” The Allergy & Nutrition Centre (www.nutritionalmedicine.org.uk/phdi/p1.nsf/supppages/franklin?opendocument&part=15)

4 Too much salt may trigger autoimmune diseases – studies.”  Julie Steenhuysen,  March 06, 2013, Thomson Reuters (www.reuters.com/article/2013/03/06/us-salt-disease-idUSBRE9251BQ20130306)

5New study indicates that reducing salt intake could save 100,000 U.S. lives per year.” Amanda Woerner, April 05, 2013, FoxNews.com (www.foxnews.com/health/2013/04/05/new-study-indicates-that-reducing-salt-intake-could-save-100000-us-lives-per/)#ixzz2R3Znc9zU)

6 Emerging Therapies, Risk Factors and Other MS Research News from American Academy of Neurology Meeting,” National MS Society News (http://nationalmssociety.org/news/news-detail/index.aspx?nid=7635)

7  “The Trouble with Tribbles,” the Star Trek Fan Club, DesuraNET Pty Ltd.  (www.moddb.com/groups/star-trek-fan-club/videos/startrek-trouble-with-tribbles)

“Now it’s time to say goodbye to” Mouseketeer Annette.

Annette FunicelloAnnette Funicello, the beloved 1950s Disney “Mouseketeer” and 1960s iconic teen “Beach Party” movie star, died on April 8th in Bakersfield, CA, at the age of 70 from complications of multiple sclerosis; a disease she lived with since her diagnosis in 1987.

Not only was she the iconic actress who starred in several of the “Beach Party” series movies including “Beach Blanket Bingo” with Frankie Avalon, she was a wife and mother who became a respected advocate for multiple sclerosis awareness and research.  Per the Walt Disney Company statement, Funnicello was “well known for being as beautiful inside as she was on the outside . . .”

The statement continues with “‘Annette was and always will be a cherished member of the Disney family, synonymous with the word Mouseketeer, and a true Disney legend,’ said Disney chairman and CEO Bob Iger in a statement released by Disney. ‘She will forever hold a place in our hearts as one of Walt Disney’s brightest stars, delighting an entire generation of baby boomers with her jubilant personality and endless talent.'”

Born on October 22, 1942, in Utica, New York, the Funicello family moved to the San Fernando Valley when she was four years old.  Walt Disney discovered her at age 13 whenAnnette Funicello she was the lead dancer in Swan Lake at Burbank’s Starlight Bowl.  Disney invited her to “audition for his new children’s TV series called The Mickey Mouse Club and was hired on the spot to become a Mouseketeer.”  The series debut was October 3, 1955, and ran for three seasons then in reruns through the 1990s.

Read the full National MS Society article by clicking on the following text: Annette Funicello.  Much of the information above is from the Press Release found at AnnetteConnection.com.  For more about Annette, read the full article at AnnetteConnection.com.  Visit the Today.com website for a slide show featuring her.

IMPORTANT NOTE: Death as a direct cause of multiple sclerosis is extremely rare.

Multiple Sclerosis is a Damned Expensive Disease!

The Unspeakable Bits; From A Life With MS
 Trevis Gleason speaking
 When people in the general public read that multiple sclerosis is a “prime-of-life” disease, I really don’t think they understand the totality of what is being stated. It may even take those of us diagnosed a bit of time to realize, but when MS hits in the “prime of life,” it can also hit our prime earning years.
That’s just one of the ways that MS can hit us in the pocket.
Even if we are able to continue working, many of us have had to reduce workload, hours and stress, and excuse ourselves for medical appointments – all hindrances to those brass rings of promotion and pay increase. As a co-leader of my Men With MS self-help group puts it, “We go from ‘thrive’ to ‘survive’ mode.” These changes to our pay and potential pay can come back to haunt us a second, third and even fourth time when it comes to long-term disability payments, Social Security Disability and even reduced Social Security retirement checks when we reach retirement age.

More on Tecfidera fka BG-12

Here is more information on Tecfidera. If you want to plug yourself into Biogen’s site site, including the latest on patient financial aid, go to the following web page:
Www.tecfidera.com

You will note one particularly exciting bit of information, but pardon me while I restrain my anger on behalf of yours truly and many of my friends and acquaintances.

Biogen will be offering a patient assistance program that has no financial requirements. A $10 monthly co-pay. That’s right, $10. Get it now, get it while it’s hot!!

oh my.. Hey you….and you…And you..you know who you are. You’re on Medicare (admittedly like me) and/or Medicaid, or you are a veteran, you don’t qualify for the $10 a month copay. You’ll have to pay hundreds of dollars monthly, perhaps even $1,600 a month. Sure sure, you are probably among those MSers that need effective treatments the most, and those that have the least financial resources. Crybabies!!! Losers!! You’re probably no longer in the workforce and therefore no longer productive. And you are probably not paying an insurance company $700-more than a thousand dollars a month in premiums. You’re living on the government dole that you already paid into for years. Stop your complaining and accept your lot in life.

Or hmmmm. You can write angry letters and make phone calls to the drug companies and government officials that are keeping novel new drugs from us. And you can also be like me and wait for Sanofi/Genzyme’s Lemtradin annual infusion treatment to be approved hopefully later this year. Why? In many cases, because it is a hospital outpatient procedure, your copay will be zero or next to it.

Cary Polevoy

Hunger-Spiking Neurons May Control Multiple Sclerosis And Other Autoimmune Diseases

Medical News TodayScientists at Yale School of Medicine suggest that if appetite promoting neurons are suppressed, this might activate T-cells to stimulate inflammation processes that could lead to multiple sclerosis and other autoimmune diseases.

It is submitted that neurons that regulate hunger in the central nervous system (CNS) also control immune cell function.  Thus, suggesting our eating behavior can be a defense mechanism against infections and autoimmune disease development.

Read full article by clicking on the following text: Hunger-Spiking Neurons May Control Multiple Sclerosis And Other Autoimmune Diseases

Blue Light Special for BG-12

Biogen has released pricing on BG-12, aka Tecfidera. Wow gee, that rolls off the tongue, doesn’t it.

Ok, back to reality. ONLY $54,900 a year. That works out to only $4,500 a month. If you have typical insurance with a 33% copay on these drugs, relax. It is only $1,500 a month.

Now, don’t get me wrong. I don’t begrudge Pharma charging appropriate prices for new drugs. Well, perhaps with the exception of situations like a Sanofi / Genzyme taking alemtuzumab (soon to be Lemtrada upon FDA approval for this MS infusion drug which has been used to treat leukemia and off-label for MS) off the market prior to actual approval because they plan on charging twenty times the current price once it is approved for MS. THAT is usurious, is it not?

Truly, they do not to recoup development costs for both successful and failed drugs by charging “Walmart” prices. We get that.

But even when Pharma offers financial assistance programs to subsidize the high prices, they are typically limited to household incomes below $100k or even something lower. And even then, these new drugs can cost up to $1,000 a month. Not sure what percent of the potential MS market has those resources.

Well, here’s the current story. http://www.bizjournals.com/boston/blog/bioflash/2013/04/biogen-sets-55k-annual-price-tag-on.html

The human formerly known as Cary J. Polevoy, senior corporate executive and portfolio manager.

Time for a Functional Capacities Evaluation?

If you’ve been tested to measure cognitive ability because your employer denied your short term disability benefits and most of your work deficiencies/struggles are in this realm, then depending on the results, maybe “they’ll believe you” if you obtain a Functional Capacities Evaluation or FCE.

NEUROPSYCHOLOGICAL EVALUATION OR FCE?

Early in my MS progression my neurologist referred me to a reputable University Hospital psychologist who performed a neuropsychological evaluation that indeed proved I had cognitive issues.  The psychologist could not come to a determination on what the issues discovered indicated!  In other words, was it caused by Multiple Sclerosis, dementia, paranoia, or something else?  It was all a big “could be.”  Not helpful and from my perspective, it was stressful and a waste of time and money.

Frustration set in.  I simply didn’t know if I should keep working, but I was determined to continue until I either made a serious cognitive mistake and was let go or was physically injured!

I kept asking for help, but no medical professional would help me determine what to do.  These “practitioners” kept asking me what I wanted!  I was frustrated and felt alone.

Finally years later, I had an effective Functional Capacities Evaluation (FCE) performed by a respected and recognized professional Registered Occupational Therapist (OTR) with results accepted by both the insurers and Social Security Disability Insurance or SSDI.

The testing was comprehensive including measures of my physical AND cognitive abilities.  It took three sessions on different days with days between each.  The impact of my MS disability on my work performance was confirmed and unchallenged as a result – it was then I was easily and appropriately granted Short Term Disability by my employer and subsequently given Long Term Disability by my employer, private Long Term Disabilities insurer, and SSDI.

DON’T WAIT FOR THE BIG BLOW TO STRIKE!

Prior to being on disability; as part of my job I had climbed 85 feet up then down a ladder mounted to the outside of a building: then POW! my right leg “gave out” as I crossed the street to get to my car.  The nerve ending never fired to tell my muscle what to do, so it did nothing.  I nearly fell to the ground.  Thankfully no cars were coming.  That’s when I became determined and took matters into my own hands by seeking out the FCE.

The key is ensuring you have a reputable and recognized healthcare professional performing the FCE.  You want testing in which you have confidence as well as testing that – should it be necessary – is definitively recognized by insurers and/or Social Security.

Even if you aren’t mentally ready to quit working but you think (and I mean just the inkling) that your problems with MS might be negatively impacting your ability to effectively work, then get a Functional Capacities Evaluation.  And you can pay for it yourself.  You don’t need  to use insurance to pay for it if you want to keep it “under wraps.”  I would guess it would cost between $400 and $900.

If nothing else the results are clarifying and enlightening.


FYI

  • A Functional Capacity Evaluation (FCE) is a systematic and objective process of identifying and assessing the individual’s ability to physically and cognitively function in relation to work as well as the performance of the activities of daily living or ADL.
  • Neuropsychological Evaluation (testing) measures and identifies an individual’s cognitive impairment and functioning by providing quantifiable data regarding the aspects of cognition including short-term and long-term memory, attention/concentration/distractibility, problem solving, abstract and logical reasoning functions, and more.

On February 6, 2013 “A CONVERSATION ON COMMUNITY HEALTH”

John Donvan & Governor John Hickenlooper

A Conversation of Community Health – Dovan and Gov. Hickenlooper

Photo courtesy of Richard Eveleigh.

On February 6th The Atlantic Magazine and GlaxoSmithKline sponsored “A CONVERSATION ON COMMUNITY HEALTH” held in the Seawell Grand Ballroom at the Denver Performing Arts Complex. Moderated by ABC News reporter John Donvan, Governor Hickenlooper was the keynote speaker.  Three of the Governor’s discussion points:

HEALTH CONDITIONS RESULTING FROM BEHAVIORAL CHOICES
Hickenlooper said reducing the overall cost of health care requires “a push” and it must come not just from the State but also from businesses and nonprofit organizations. “I don’t think you could legislate solutions to change some behaviors, but you could certainly provide incentives.”

He wants to tackle slimming down the population, prescription-drug abuse, reduce binge drinking on college campuses, and find ways to lessen the incidence of low birth weight.

CIVIC-ENGAGEMENT MEASURES
“Civic engagement is, I think, the mortar that holds together our communities,” Hickenlooper said. “One of the hardest things in government to find money for, though, is to fund civic engagement.”

Hickenlooper noted that government officials hold lots of meetings to discuss issues but are often very slow to turn suggestions from those meetings into outcomes. Yet Hickenlooper cited the town of Wray as having successfully attacked weight problems via group effort through incentives and believes this kind of community approach can work
elsewhere in the State.

INCENTIVES TO HEALTH-CARE PROFESSIONALS TO WORK IN RURAL AREAS
Hickenlooper supports development of innovative applications that allow people to compare medical procedure costs to help uncover waste.

Gwen Johnson, an audience member, cited ineffective rural healthcare and asked why it is not being delivered successfully. Hickenlooper responded that he felt high speed Internet enhances that and holds the key to supplementing the gap in rural healthcare. [That statement caused got my hackles up!]

He also said the State should encourage further development of telemedicine, by which doctors in urban areas can work with patients outside the cities, he said.

The state could also offer to forgive student loans for doctors who work for five years in underserved rural areas — enough time that the Governor believes would be enough to convince many to stay there for the long term, he said. “Improving outcomes should always be foremost in our minds . . . with the idea of increasing community cohesion,” said Hickenlooper.