Abstract
Francois Bethoux, MD, believes in the power of complementary therapies to improve the lives of people with multiple sclerosis (MS). In fact, Dr. Bethoux and his colleagues have begun novel research on the power of music to enhance the functionality of people with MS. In this column, he discusses the challenges his patient population face and the potential benefits of complementary therapy use.
Sometimes a person with MS experiences a few symptoms that are severe and disabling. However, a combination of mild or moderate symptoms may conspire to cause significant limitations in functional activity and to compromise their quality of life. For example, a person may have moderate fatigue from MS during the day, weakness and stiffness in the legs that make it difficult to walk, as well as bladder issues and muscle spasms at night that cause them to wake up and get out of bed every hour or two. Then, one can see how sleep deprivation and the extra effort needed to walk are likely to worsen their fatigue. The resulting decrease in activity may then further contribute to their lack of energy, weakness, and stiffness, and they may feel depressed because of their chronic symptoms and difficulty performing daily activities. Symptoms can therefore create a vicious cycle that makes it difficult for people to fight them back on their own.
There are an increasing number of conventional treatments for MS, and some of the newer treatments are very powerful at controlling the disease process, which is great. However, there are two points to keep in mind. One is that these treatments are not a cure. The second point is that none of these treatments has been shown to consistently improve the chronic MS symptoms that a person is already experiencing, which leaves a large need for symptom management.
Another challenge is that because people with MS have multiple symptoms, treating every symptom with medication opens the door to polypharmacy, which we try to avoid for many reasons. There is a cost factor because, increasingly, people have out-of-pocket costs for their medications. There is also the potential for medication side effects, which can add to the patient's problems, and in some cases could lead to prescribing one medication to alleviate the side effects of another. For example, several medications prescribed for pain or spasticity can be sedative and cause a worsening of fatigue. In addition, the more medications people take, the more likely they are to miss doses or to make mistakes in terms of what they are supposed to be taking.
It is also important to point out that people with MS generally are diagnosed at a young age, typically between the ages of 20 and 40 years of age, and are engaged in a wide range of activities such as studying, raising a family, or working. Consequently, they are likely to be affected by the symptoms of MS in a significant way before they even reach what would be considered the peak of their career or personal life. At the same time, people with MS are often well versed in the Internet and social media, and many are interested in exploring various avenues to manage their MS, including alternative therapies. In my opinion, all of these points are valid incentives for thinking outside of the box and emphasizing an integrative approach when treating people with MS.
Fatigue, pain, and depression are particularly challenging because they tend to happen together, to form a “symptom cluster,” and to some extent they can feed off each other. For example, both pain and depression are associated with increased fatigue, and depression is associated with worse pain. Although we do have many conventional medications to treat these symptoms, the evidence regarding their efficacy in MS is limited. For fatigue, a few clinical trials show conflicting results regarding the efficacy of commonly used symptomatic medications, and there is growing evidence of a positive impact from nonpharmacological interventions such as exercise. Some studies reported improvement of pain, fatigue, and emotional symptoms with alternative and complementary therapies such as yoga and mindfulness. Beyond specific symptoms, general well-being and quality of life were also improved.
I started studying more traditional interventions such as symptomatic medications and physical therapy. There is actually one symptomatic medication that is approved in the United States and other countries to improve walking in people with MS. It was found in the clinical trials that there was an improvement in walking speed in some of the people who were treated with the medication. I completed a pilot study of combining this medication with physical therapy, which showed added benefit from the combination. I have also studied the effects of various assistive devices such as braces, canes, or walkers on walking. We still have a lot to learn about these traditional interventions and about the benefits of combining them.
About nine years ago, I was approached by a music therapist who introduced me to a technique called rhythmic auditory stimulation (RAS). It is a technique that has been used for quite a while to improve movement, particularly walking, in people with Parkinson's disease, and also for people who have had a stroke and are weaker on one side. This therapist thought that RAS could be used in people with MS.
Upwards of 75% of people with MS have some degree of walking difficulty in the course of their disease. We also know from surveys and other studies that walking impairment has a deep impact on people's lives and their ability to perform daily activities, work, and enjoy their life. So it seems to be a very important topic to address, and if we can do that through a technique such as RAS, which is low cost and thought to be safe, then there is the potential to help many people. We started by doing small-scale studies that were encouraging and showed a beneficial impact on people's gait. 1 Now, we are pursuing larger-scale studies and studying how this beneficial impact on walking occurs with RAS. 2
The basic idea of RAS is that by listening to a rhythmic beat while people walk such as with a metronome, their gait and ability to walk may improve because walking is a rhythmic activity. Once we master the activity of walking early in life, then it seems to become fairly automatic, and we do not think about how our legs move in most instances when we walk. However, when there is damage to the brain and/or to the spinal cord, then all of a sudden, movements become less predictable, and many people say, “Well, now I have to pay a lot of attention to how my legs move when I walk.”
In Parkinson's disease, the rhythm of walking is affected in a very significant way, causing slow gait with short variable steps, sometimes freezing, and difficulty starting and stopping. Gait changes in MS are distinct from the “Parkinsonian gait,” but there are similarities. People with MS often walk more slowly, take shorter steps, and the steps may be more variable. They also spend more time with both feet on the ground during the gait cycle, which may reflect the fact that they do not feel as stable on their feet. These gait abnormalities in MS have been consistently observed across studies, although they vary significantly from one individual to the other.
Because of these impairments, getting from point A to point B while walking requires a lot of effort. It is both a physical effort and a cognitive effort to make sure that the legs move in the appropriate way so the person can move in the right direction and avoid falling. With that in mind, my colleagues and I thought that if we could introduce a technique that would make walking more automatic again for people with MS, that would be great.
The therapeutic element of RAS is the beat of a metronome, but a metronome is not very enticing. We thought that a musical envelope around that beat, which has been studied by others, is more enticing. It is almost like using an adjuvant to improve the taste of a medication to make it more likely that people will take the medication again. However, now it has been discovered that the music by itself, beyond the rhythm, actually has a therapeutic effect on the brain.
We tried RAS in people with various degrees of walking disability, some of them walking only short distances with walkers, some able to walk around inside and outside of their home without an assistive device. Most people found that it was somewhat easier to walk while listening to the music with the beat. We set the beat about 10% faster than their spontaneous walking cadence or tempo, so that we would achieve a training effect, hoping that the small increase would not increase the risk of falling. The feedback from participants was very positive, and that was an encouragement to continue the research.
The model we used was to send people home with recordings of RAS music at a tempo 10% faster than their spontaneous walking pace. They were instructed to walk at home for 20 minutes a day, hopefully every day, for several weeks. We saw some encouraging results suggestive of a training effect compared to continuing with their usual activity level, and most enjoyed the experience. For some people, the benefits were sustained several weeks after they stopped using RAS. We did not identify any safety issues.
Recently, we have started to look at the effects of RAS music on brain activation. First, we were able to show that when people with MS perform imagery of walking, they activate many parts of their brain, as demonstrated by functional magnetic resonance imaging. When we have them do this task of imagery while they listen to the rhythmic music, however, they seem to need less activation of the brain. We have to be careful about how we interpret this, but one way would be to say that they may need less brain effort to do the imagery of walking when listening to music. This may reflect what happens when we have them actually do the walking with the music, in that it becomes more automatic, so they do not have to think so much about their legs.
We also saw some correlation between the brain activation and the fatigue that people reported in their daily life. This is all very preliminary, and I cannot say that we have proven cause and effect, but it suggests that RAS is very worthy of investigating and trying to validate on a larger scale the therapeutic effect of rhythmic music on brain activity and the ability to walk in people with MS. Because it is simple and low cost, RAS could be accessible to many as a useful and safe complement to other treatments and interventions.
I think that the role of the arts as therapeutic agents is under-recognized. Yet, the arts are omnipresent in our lives, and they have the power to generate strong emotions and to help express our feelings sometimes better than words. Art making also involves movement and thinking. In MS specifically, beneficial effects on the mind and body were reported with music, visual arts, and dance. I already mentioned that rhythmic music can facilitate walking. There are many case reports of the positive impact of engaging with the arts in MS, but we still have a lot of work to do in terms of building evidence so that we can better advise our patients.
Engaging in arts-related activities and deriving consistent benefits may require the guidance of a trained and credentialed professional, such as a music, art, or dance therapist. In fact, RAS is a neuro-music therapy technique. In the MS center where I practice, we have introduced art therapy in our infusion suite. Patients receiving an intravenous treatment can spend up to several hours in the infusion suite, and this represents an occasion to transform a long wait into a great opportunity to engage in art making. To me, this illustrates how therapies that are considered alternative can be integrated into the routine medical management of a chronic disease. The arts can also have a positive effect on the patients' family members who are also indirectly affected by the disease and on healthcare providers as well.
In this context, introducing complementary therapies could feel like a natural step in providing more options to our patients because our traditional approaches have limitations that we fully acknowledge. This is also a natural consequence of placing the patient at the center of the care team and of emphasizing individualized treatment approaches to fit the needs and preferences of a particular individual, rather than using fixed “recipes” for everybody.
There has been a general openness to complementary therapies in the field. One significant concern is that we do not always have the evidence needed to guide clinical practice, particularly to understand which interventions may work better for specific individuals or specific symptoms, and to tell our patients what they may expect. However, I am encouraged by the increase in the number of publications on alternative and complementary therapies in MS over the years.
Mellen Center for MS Treatment and Research, Cleveland Clinic, Cleveland, Ohio
Arts and Medicine Institute, Cleveland Clinic, Cleveland, Ohio
Websites:
In a disease that has such a profound impact on the lives of people and can cause so many problems, I think an integrative approach is the one that is the most likely to provide the best benefit that we can offer our patients. Patients have expressed a very strong interest in complementary therapies, but many of them have also expressed a desire that this be combined with their traditional management, and they want the team treating their MS to also be able to advise them on these therapies. For example, a person with MS who has balance issues will not be able to do all of the yoga poses safely, and they may need guidance about how to make it work. The field of MS care is also fortunate to have partners in this endeavor, such as the National Multiple Sclerosis Society, the Multiple Sclerosis Association of America, the Multiple Sclerosis Foundation, and other organizations that have made available to people with MS a wealth of practical information that they can use.
The drive in healthcare toward preserving and maintaining health and wellness, looking at the value of our interventions, empowering patients, and improving the patient experience is an incentive to learn how to integrate complementary therapies into the care of our patients. In the years to come, I hope that we will have better knowledge that allows us to recommend more targeted interventions to people who every day must fight the consequences of a chronic disease. ■