Why did 8,000 MS scientists and physicians travel thousands of miles and devote a week outside of their labs and offices to attend the 2013 ECTRIMS meeting that just took place in Copenhagen? The bottom line is that connecting with other scientists to share ideas, communicate new findings and even learn what’s not working is the lifeblood of science and it’s what stimulates faster progress. Meetings like this are vital to spurring new approaches and uncovering promising leads – more about that later.
During the week attendees heard about cutting-edge research that addresses virtually every aspect of the challenge to stop MS in its tracks, restore function, and end MS forever. My National MS Society colleagues blogged on some of the exciting progress toward protecting and repairing the nervous system, maximizing rehabilitation and exercise therapy, and discovering risk factors that may worsen MS or increase the likelihood of developing it. And scientist/journalist and person living with MS, Dr. Julie Stachowiak, shared personal reflections on new research about children in MS families, teens with MS, driving, exercise, shared decision making, and some emotional issues that can occur in people with MS.
When I started as a laboratory immunologist more than 20 years ago, the major focus in MS research was searching for ways to turn off the destructive immune attacks. These efforts paid off as there are now immune-based therapies that can help control relapsing forms of disease for many people. While researchers continue to look for ways to improve the treatment of relapsing MS, the focus in MS research is shifting to discovering strategies that stop MS progression and repair the damage that causes disability. This has relevance to people with all types of MS, but especially people with progressive MS.
In 2005 the National MS Society made significant investments into nervous system repair and protection research – and we continue to see some promising results. People are excited by the possibility, once only a dream, that we will find a way to repair damaged myelin. This is important not only for restoring function, but many believe that re-establishing the protective myelin coating on axons will shield them from further harm. As noted neuroscientist Dr. Bruce Trapp said during his presentation, “Remyelination is the best neuroprotective strategy for MS patients.”
As pretty much all of us who are no longer teenagers can remember, the teen years can be very rocky as young people transition from childhood to young adulthood. Adolescents are often overwhelmed trying to keep up with the regular duties of growing up. A diagnosis of MS forces them to make decisions and actions to adapt to and manage a disease that they will have the rest of their lives, as well as cope with symptoms that are often bizarre and can be debilitating.
Bibi Holge-Hazelton, a Danish nurse who cares for teenagers with chronic illnesses, gave a presentation at ECTRIMS 2013 on some of the considerations and challenges for teenagers living with MS.
One of the few studies on teenagers with MS found the main impacts that MS has among people of this age group include...
Imagine that you are in the middle of giving an important presentation at work and burst out laughing uncontrollably. What if you started sobbing while in a conference with your child’s teacher? Or doing either of these things in the middle of a grocery store, a movie theater or a fancy dinner party?
Pseudobulbar affect is a symptom of multiple sclerosis that is relatively uncommon, occurring in up to 10% of people with MS at some point in their lives. Also known as involuntary emotional expression disorder (IEED) or the less dignified, but nicely descriptive “emotional incontinence,” the simplest definition sums it up as “laughing without happiness and crying without sadness.” ...
It’s getting clearer that exercise and rehabilitation can help many levels of function and quality of life for people living with MS. This year, ECTRIMS is being held in conjunction with the 18th Annual Conference of Rehabilitation in MS, and I’ve been impressed by the extent to which researchers are applying creative strategies to study and maximize the potential benefits of rehab and exercise to address MS.
Some of these strategies were described by Dr. Dalgas (Aarhus, Denmark), who reminded the audience that for many years people with MS were advised against exercising because it seemed to make fatigue and other symptoms worse. Thanks to research, we now know that this worsening is usually temporary and outweighed by the benefits.
Ok, we all know that we should be exercising. Besides all of the great stuff that exercise does for everyone (lowered cardiovascular risk, increased muscle mass, etc.), research on the effects of exercise in MS has shown that it:
Lowers risk for depression
Improves MS-related fatigue
Improves cognitive functioning
Notably, exercise has also been shown to increase overall daily activity level, functional capacity and balance in people with MS as well. Overall, this adds up to a measurable increase in quality of life. There is even limited evidence in animal models that exercise therapy may halt, slow or reverse disease progression of MS.
Before I was diagnosed with MS, I developed a fear of driving. I would get very nervous even before I got behind the wheel. As I inched along in my car at speeds well below the speed limit, it would take all my resolve not to slam on the brakes if a car 200 feet ahead of me changed lanes. My biggest horror was a traffic circle I would have to get through on the route from my home to almost anywhere. By the time I reached my destination, I would be shaking and drenched with sweat. When I spoke to my doctor about it, he told me to practice more, which was the last thing that I wanted to do.
Shortly after that, strange sensations in my legs led to my diagnosis of MS. My neurologist agreed that my anxiety about driving was most likely related to cognitive effects of MS and told me not to drive if it made me uncomfortable. Except for rare trips to a nearby grocery store, I did not drive again for almost 8 years.
There’s a lot of progress being reported this week at ECTRIMS on the topic of MS risk factors and triggers. I think this is really important because if we knew exactly what causes MS, we might be able to prevent anyone from ever getting the disease again. But even more relevant to people who already live with MS is new evidence for risk factors that are within a person’s control and which may make their disease worse – or better.
For example, in a large population study by Dr. A.K. Hedström and team from Stockholm, Sweden, they confirmed that cigarette smoking increased the risk for developing MS at any age, and climbed with the amount smoked. They also found that quitting smoking completely flattened out that risk back to normal within a decade.
Do you and your health care team employ a shared decision making process?
Shared decision making (SDM) is a process in which clinicians and patients work together to select tests, treatment and disease management based on clinical evidence and the values and preferences of the patient. I learned a great deal today during a teaching course at ECTRIMS 2013, entitled “Shared Decision Making for Multiple Sclerosis Treatment.”
I am a huge fan of a shared decision making approach. Besides the simple fact that it results in more dignity for the patient, I believe it is crucial to increasing adherence. When people are prescribed treatments that they don’t want (either because they think they don’t need them or are afraid of some of the side effects), there is a very good chance that they will not use the medications correctly – or at all.
Although I do my best to function like a “normal person,” I know that my MS has an impact on the rest of my family. My husband often has to take on some of the household duties when I become fatigued or overwhelmed, and it can be very difficult for me to hold my own in a conversation after 8:00 pm.
What I worry about the most, though, is the effect that my MS has on my twins. I once heard a saying, “Parenting is the hardest job in the world if you are doing it right.” Sometimes it feels like “doing it right” is almost out of reach when one of the parents has MS. With an estimated 2.3 million people in the world living with MS, a disease typically diagnosed between the ages of 20 and 50, there are clearly millions of children who are in an MS-affected family.
Have you ever tried your hand – or your feet – at the video dance game Dance Dance Revolution, or DDR? I played a few times when my kids went through their DDR phase a few years ago. It was lots of fun, and a great challenge, trying to keep up with the game’s fast-paced, ever-changing dance moves. It required every ounce of concentration I could muster. And, let me tell you, it wasn’t a pretty sight!
I haven’t tried (or even thought about) DDR in years. But my curiosity was piqued when I read this article about how DDR is helping some people with multiple sclerosis work on their balance, coordination, physical fitness and cognition. Researchers at The Ohio State University have mounted a study in which people with relapsing-remitting MS practice DDR a few times a week. One woman quoted in the news report said she’d seen improvement in her symptoms and her overall quality of life since taking part in the study.