Sunday, December 22, 2013

Improving Your Posture is More Than Sitting Up Straight

MS can contribute to poor posture in a number of ways. Muscle weakness or imbalance of muscles in the torso, especially weakness in core body muscles in your back and stomach, can lead to poor posture. When these muscles are weak, it is more difficult to keep your back and pelvis in proper alignment, which may lead to slouching and/or leaning backwards to compensate for the weakness.  Improper spinal alignment can cause neck and back strain as smaller muscles must work against gravity to hold the body upright.

Patients who experience weakness in the lower extremities may find standing for extended periods of time difficult, and may also begin to slouch or lean to compensate.  Patients who have difficulty walking due to foot drop or weakness in leg or hip muscles may experience poor posture because their muscular imbalance causes them to overcompensate by walking with an exaggerated gait.  Each of these circumstances may increase fatigue which itself can contribute to poor posture. It can become a vicious cycle.

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Living with MS: How to Improve Your Posture

Sunday, December 15, 2013

Improving MS Through Rehabilitation

Patients diagnosed with any form of MS may experience a variety of symptoms, several of which can interfere with everyday living.  Symptoms might affect strength, mobility, balance, gait, agility, cognitive function, speech, and functions taken for granted such as swallowing.  Rehabilitative therapies can help to counteract some of these symptoms and address very specific patient needs.

Rehabilitation specialists work with patients to help maximize physical abilities, function effectively at work and at home, learn strategies to compensate for symptoms and challenges, increase patient safety and independence, and promote general health and well-being.  To gain most benefit from rehabilitative therapy, patients must take an active role in following the treatment plan prescribed and guided by therapists.  Common rehabilitative strategies used in MS include the following:

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Effectiveness of Rehabilitation for Improving Multiple Sclerosis

Sunday, December 8, 2013

Is it an MS Relapse or Pseudo-Exacerbation?

Many people with MS who are heat sensitive may experience a temporary worsening of symptoms when the weather is very hot or humid, sunbathe, get overheated from exercise, or take very hot showers or baths. Some people may notice that their vision becomes blurred when they get overheated—a phenomenon known as Uhthoff's sign.  Even a slight elevation in core body temperature of one degree can cause a temporary increase in MS symptoms.

These temporary changes in symptoms are called pseudoexacerbations which look like and act like real relapses, but are temporary and do not indicate disease activity or progression.  Realize that when we talk about pseudoexacerbations, we are certainly speaking of very real symptoms as there’s nothing “fake” about the experience; it is just temporary.  Common triggers that may cause a pseudoexacerbation include infection, especially urinary tract infection, stress, pain or fatigue, exposure to heat or cold, premenstrual syndrome, or certain medications.

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What is an MS Relapse versus a Pseudoexacerbation?

Thursday, December 5, 2013

Carnival of MS Bloggers #150

Welcome to the Carnival of MS Bloggers, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.

From Life Well Lived

As I am listening to The Black Swan, The Impact of the Highly Improbable  by Nassim Nicholas Talebin my car on the way to work this past week, I keep finding myself engrossed in analyzing where I think the logic a novel way to look at the world and where I find the logic lacking.  I can not help it.   Being raised sitting at a dinner table with a physicist questioning every assertion I made as a know it all teen, I have been trained to question all logic presented to me.  As the title of the book implies, it is a book looking at the many instances when the one outlier event is more important than all of the preceding and following events.

One of his examples is the 1,001 days in the life of a turkey.  For the first 1,000 days of the Turkey’s life, the farmer is the good guy.  In fact, he might be the best guy in the whole world because every time the turkey sees the farmer means he is about to get fed.
Unfortunately for the turkey on the 1,001st day, the farmer has come to begin the Thanksgiving celebration preparations.  The 1,001st day is the black swan event for the turkey because it completely changes how the first 1,000 days should be viewed.  The farmer was not providing food because he wanted to make the turkey happy.  He was doing it to fatten him up.  Because the Thanksgiving massacre could not be foreseen by the Turkey with the knowledge/experience, it had and the result had such a large impact on the turkey’s life story, it met the author’s definition of a “Black Swan event.”

One of the central points in the book involves one of my favorite topics, perspective.  In the book, Taleb points out the problems with narratives as one of the things we should watch out for in our decision-making.  For days 1 to 1,000, the turkey’s view is highly reliable, and all of the other animals on the farm should be listening to him.  It is the 1,001st day that shows how wrong he was.  If one takes Taleb’s parable to heart, one would think the turkey better off never to trust the farmer’s food in the first place, and the other turkeys most certainly should not listen to the first turkey.  Instead, they should be mindful of the story of the 1,001st day.

I try to take this story to my MS treatments.  I have been on Tysabri for 7 years, and it has been a quality of life saver for me.  If one were to read (too much in my opinion) into the turkey story, one would be hearing all kinds of warning bells.  I will grant in the truest sense it would not be a black swan event because I can conceive of the possibility of getting PML (a potentially fatal brain infection).  Still, what if one simply lumps PML with all the other things known and unknown which may go wrong taking a drug for longer than the duration covered in any published study?   I do not pretend to know all that may go wrong.  When I want information of the unpublished variety on drug outcomes, I have only the stories of patients on sites like

What I know is like the turkey during the first 1,000 days, I am currently happy and thriving.  When I started taking Tysabri, it was newly reintroduced to the market after being pulled for causing PML resulting in patients’ deaths.  Still, other treatments had failed to abate my increase in symptoms.  Therefore, my wife and I came to the decision, “Give me 5 good years over 30 crappy ones.”  Nobody is promised the 1,001st day.  For that matter, nobody is promised tomorrow.  In this light, I think the logic of worrying about the black swan events fails when confronted with a known medical condition for which there is no “cure.”

Now, I as I listen to the rest of the book, I am keeping in mind two facts:

First, nobody should stay on Tysabri for 7 or more years simply because I have survived.  To do so would be to fall for one of Taleb’s unseen biases.  Reading from all those who have thrived on the drug and deciding to go the Tysabri route for MS treatment with no further research is to ignore all those who would not write because the drug either didn’t work for them or killed them (preventing them from writing about it).  So deciding based on my blog and others like it may be and probably is unwise.

The second logical problem I keep running into is my minds need to create stories to better understand the why and how for things in my life.  I note even in a book that seems to decry the prevalence of storytelling, the entire book is full of one story after another to illustrate his points.  I think he is correct about the dangers of reading too much into stories because the “how and why” are all subject to the perspective of the storyteller.  As one of my teachers said in high school, the victors write the histories.  However, even they do not always know the truth behind why they won.

Still, without stories, we are left with only statistics.  Ironically, pure math misses as many truths as relying solely on story telling.  I will never forget arguing with my calculus teacher in college over the answer to her word problem as she insisted the answer was “The bus can carry 19 and 2/3 people.”  She marked my answer of 19 wrong insisting if I was going to round the number, I should have said 20.  I told her I knew of no “2/3 person” and in fact, I knew of no “partial people” since our country tried to cut ties to racially and gender motivated ways of counting people.  It was probably as much my attitude as my answer making her dismiss my answer as wrong refusing to give me credit.

So with this in mind, I come back to Tysabri and the turkey.  I continue to take it because it makes my life now better.  Sure, the odds seem to get a little worse with every new set of statistics, but those are numbers.  They don’t say anything about my ability to hold a full-time job, parent kids who need me, run a half marathon or any of a hundred other things I can now do which I probably could not if my former MS course had been unaltered.  I may have my 1,001st day in the life of a turkey, but it will be after having lived for the full 1,000 days.  I prefer this to the life of the turkey who chooses to live always hungry, always wanting.

I note Thanksgiving does not come at the 1,001st day of every Turkey’s life.  In my case, I hope Thanksgiving comes 2 months after I die comfortably in my sleep of old age having lived the life of a happy Turkey eating whatever my fate provided.

This concludes the 150th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on January 2, 2014. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, December 31, 2013.

Tuesday, December 3, 2013

Imroved RA Treatments Have Led to 50% Reduced Disability and Emotional Distress

Nowadays, only 1 out of 4 RA patients are disabled after the first four years of treatment and the percentages of patients with depressed mood and anxiety have been reduced about 50%, according to a new study published today in Arthritis Care & Research, a journal of the American College of Rheumatology (ACR). That’s good news for patients diagnosed today whose treatment choices, both pharmacological and non-pharmacological, have improved since 20 years ago.

Not only have attitudes toward evidence-based medicine changed in recent decades, but treatment options have increased dramatically.  Rheumatologists are also more likely to recommend non-pharmacological treatments such as physical exercise to patients.

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Physical Disability and Psychological Distress in RA Patients Reduced by 50% in Last 20 Years

Sunday, December 1, 2013

Relapsing Forms of MS vs. Progressive MS

MS is not a disease that follows a standard disease course, identical from person to person.  However, the disease does present with certain patterns and characteristics which help neurologists classify the type of MS a person may have.  In general, MS can be divided into relapsing forms of the disease and progressive forms of the disease.  Note that some forms of MS can have both relapsing and progressive features.

The four commonly accepted types of MS are:
  • Relapsing-remitting MS (RRMS)
  • Secondary-progressive MS (SPMS)
  • Primary-progressive MS (PPMS)
  • Progressive-relapsing MS (PRMS)

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Differences Between Relapsing-Remitting MS (RRMS) and Other Forms of MS