Thursday, October 25, 2012

FEAR; The Boogie Man of Multiple Sclerosis Emotions

The Unspeakable Bits; From A Life With MS 

‘Tis the season of witches a-broom, of zombies and ghouls and of vampires and ghosts. With Halloween just around the corner I thought it appropriate to bring up the things that go bump in the multiple sclerosis night. Well, maybe not the actual things, but our dread of them.

I don’t remember where I heard it first, but someone wiser than I once said that “fear is the opposite of hope.” Being that we all live our lives in hope of a good day versus a bad one, with hope for a cure and hoping that our generation is the last to hear the words, “you have multiple sclerosis,” it is only natural that we sometimes experience the through-the-looking glass emotion of fear. 

Fear – rational fear – can be a very healthy emotion, when taken as prescribed by nature.

Walking through the early forests and jungles, primordial man’s fear of being eaten by his equal on the food chain was a real and justifiable concern.

Irrational fear, however, is that little voice that I can only hear in the most alone times as I try to sleep. Irrational fear is the “what if, Trevis” that can whisper into my ear as a new symptom takes hold or an old nemesis grips me by the semi-recovered part.

This kind of fear can be a rabbit hole of extraordinary proportions and more difficult to exit than Pan’s labyrinth.

The key is, of course, to keep ourselves from taking that first step. As my Neolithic ancestors have, however, passed on that reactionary little part of my brain where fear is housed, I must find a way to cope with the times I do feel the MS tiger’s breath on my neck.

Just like a parent turning on a light and checking under our bed, I feel that addressing our fears in the bright light of the “inter-web” can be a calming factor. Even more calming than admitting my own fears is seeing that I am 1) not alone in having the fear and 2) reading of others' successful tactics of dealing with the things which I fear most.

No longer am I then a lonely wanderer, alone at the edge of night and day. I am suddenly a member of a strong and like-minded tribe. I can talk to people who have known and combatted my fears. They can show me not only how to recover from them, but also how to avoid their trap in the first place.

When FDR said that our only fear was “Fear itself,” he – as a polio survivor himself – must have known the grip that fear can have on a person. The greatest risk is that fear can freeze us in our tracks and keep us from moving forward in our lives, in our loves and in our pursuits.

I invite all of us to share one of your MS fears in the comments. It is not a weakness to talk of our fears, but rather, I’d argue, a strength. I also welcome respectful reactions and responses to one another in these pages. Like a fabled hunter regaling our tribe with tales of a successful quest, we too can take a little bit of fear out of our collective night and help one another get on with the living of our life – MS or not –with hope.

Wishing you and your family the best of health.




Thursday, October 18, 2012

Genetic & Bacterial Risk Factors in MS

Genetics and bacteria in the gut suggest a fascinating connection to the immune system. During ECTRIMS, 2012, scientists talked about new advances relating to these MS risk factors.

Tuesday, October 16, 2012

Developments in Treating Cognition

New studies are helping us understand why many people living with MS have cognitive challenges, how we measure cognition and what we can do to treat cognitive dysfunction. Studies are being presented here at ECTRIMS that investigate cognition and MS.

Saturday, October 13, 2012

Shedding some light on vitamin D and MS

We all know that having proper levels of vitamin D is important to our overall general health. But scientists are continuing to gain more understanding about the link between vitamin D levels and what it means to people living with MS.

MS Curves: A Tool to Calculate MS Severity

Julie Stachowiak, PhD

We have all heard time after time that MS is an unpredictable disease and that it is impossible to say with any certainty what will happen to people as they live with this disease. However, although I agree that it is difficult to say exactly what will happen to an individual with MS, what if there was data on what has happened to lots and lots of people with MS? From that, one could build a model of what was likely to happen to individuals living with MS.

The MSBase registry is a very large international database containing information about almost 20,000 people living with MS from different countries (to see how many individuals from each country are represented, click here: Patient Enrollment by Country). It is intended to be used by individuals and research centers conducting observational research on people with MS. However, a new online tool has been developed that we can all use.

Called the MS Severity Rank Calculator, this tool allows comparison of an individual's disease severity (as measured by the Expanded Disability Severity Scale, or EDSS) to people who have had MS for the same amount of time. The data in the MSBase registry is updated regularly, so it will reflect the changes in MS disease course over time due to improved diagnostics and uptake of disease-modifying therapy.

You can enter your EDSS scores (or estimated EDSS) at different points after diagnosis and see where you are in terms of disability in relation to other people with MS. In addition, you will be able to see your trajectory of relative disease progression over time, allowing you to have a visual estimate of the course your MS is likely to take.

Check it out by clicking here: MS Severity Rank Calculator.

I was fortunate enough to meet one of the creators of MS Base, Helmut Butzkeuven of Australia. I complimented him on the creation and ease of use of the MS Severity Rank Calculator. I ended by saying, "Wow, if I had that much data at my disposal, I would play with it all day." Without missing a beat, Dr. Butzkeuven replied, "We do."

Friday, October 12, 2012

Why is it harder to work with MS?

Julie Stachowiak, PhD

Many people with MS find it difficult to continue working, even in the early years of the disease. Tasks that seemed challenging before MS can become seemingly insurmountable. The unpredictability of MS, both in terms of fluctuation of daily symptoms and unknown levels of future disability, make mapping out a strategic career path virtually impossible. We simply do not know what the future holds around our ability to perform a job.

I am lucky enough to be able to work from home. I am able to adjust the timing to work more when I feel good and take a quick nap if needed. There are days when I can work a full day, but there are many days when I do not feel productive at all when I sit at the computer and even 15 minutes looking at the screen feels like torture.

I know that as each year has gone on, the problems that I have had in trying to work efficiently seem to get worse. However, it appears that some people who are newly diagnosed or have just had one episode of a clinically-isolated syndrome may already need to adjust their time at work.

Researchers in the Netherlands wanted to look at how MS-related cognitive dysfunction affected work in people who are recently diagnosed with MS. In the
Cognition and Socio-Economics (COGNISEC) study, the group of researchers studied 45 people with MS who had been diagnosed with MS or had a clinically isolated syndrome within the past 2 years and have been on disease-modifying therapy for less than 6 months (or not at all).

Here is what they found:
  • On average, people worked about 25 hours per week, over 3.8 days. 
  • Those people with higher fatigue, lower self-efficacy and higher disability all decreased their working hours within 12 months following diagnosis. 
  • Lower long-term memory scores correlated with a lower number of hours and days worked during the week. 
  • People who scored lower on "focused attention" and "speed of memory" were more likely to say they "wished to work less." 
  • Interestingly, scores on tests assessing depression (Beck Depression Inventory) did not correlate at all with quantity of working hours.

This research shows that cognitive dysfunction negatively impacts the capacity to work, even in the very early stages of MS. It indicates that working memory and long-term memory may counteract fatigue, disability and low self-esteem. When memory is impaired, the person is no longer able to compensate for these issues as well, and these factors may work together to impact work performance.

What does this mean? Let's face it; even jobs that we love can lose some of their luster when we have to negotiate symptoms that add to our physical disability. However, it is important to realize that even early in the disease process we may find things becoming more difficult. While it is tempting to keep pushing ourselves to do more and overcome some of these challenges, it is important to remind ourselves that we may have very real cognitive symptoms related to our MS that are impacting our abilities to work the same way we did in the past.

But don’t let this research get you down. Many people with MS continue working long after their diagnosis. Disease-modifying therapies, new technologies, better symptom management, legal employment protections, and community resources can help you remain in the workforce and education and preparation can be your most powerful tools for success. If you’re struggling to keep up at work, and aren't ready to throw in the towel just yet, contact the National MS Society (1-800-344-4867) to learn more about your options and get connected with employment resources in your area.

Emerging therapies and alternative treatment strategies

Work is constantly being done to learn more about new ways to treat MS. Biotherapies continue to make their way from trial to market. Innovative and box alternative treatment strategies are also being studied to understand and treat MS.

Will we all develop progressive MS?

Julie Stachowiak, PhD

This is a question that lurks in the minds of many people diagnosed with relapsing-remitting MS (RRMS). For many of us, every twinge brings the worry that this is the beginning of progression to secondary-progressive MS (SPMS). New research indicates that as we age with RRMS, we may not have to worry about this quite as much.

An estimated 85% of people living with multiple sclerosis (MS) are initially diagnosed with RRMS. Some of these people will eventually develop secondary-progressive MS, which is characterized by a more steady progression of symptoms and disability and fewer or no relapses.

It used to be assumed that 80 to 90% of people with RRMS would eventually develop SPMS within 25 years (50% within 10 years) of diagnosis, although people living with MS were not followed for a sufficient length of time to really know what was happening.

SPMS is diagnosed when a person who was initially diagnosed with RRMS has worsening symptoms and/or disability without relapses for 6 months or more.

Collaborating researchers from Turkey, Lebanon and the US wanted to determine the percentage of people with relapsing-remitting MS that will never develop secondary progressive (SPMS). They combined two databases of people living with MS in order to derive the information. Of these people, approximately 30% had taken disease-modifying therapy.

The researchers found that our age impacts our chances of developing progressive MS. SPMS is typically diagnosed at an average age of 45 years, plus or minus 10 years, regardless of when people are diagnosed with RRMS. Interestingly, primary-progressive MS also tends to be diagnosed at the same age.

What does the "age effect" of the risk of progressive MS mean in terms of risk of developing SPMS?
  • Although it seems logical that the longer you live with RRMS, the closer you may be getting to converting to SPMS. Once you are older than 45, this does not seem to be the case. In fact, the opposite is true. 
  • Once a person with RRMS is older than 45, their risk of converting to SPMS drops to 35%. 
  • A person older than 50 only has a 20% risk of developing SPMS. 
  • After age 60, the risk of SPMS conversion drops to 7%. 
  • After 75 years of age, if a person with RRMS has not developed SPMS, it is extremely unlikely (less than 1% chance) that they will develop SPMS. 
  • Based on the data, researchers estimate that between 43-38% of people with RRMS will never develop SPMS, even if they are followed until they are 75 years old.

I don’t have to tell you that this is good news for those of us who are middle-aged and living with relapsing-remitting MS. In my opinion, the fact that our risk of developing progressive disease actually continues to decrease as we age is one of the few positive side effects of getting older.