By Patricia Daily | When people are first learning to live with multiple sclerosis, they notice that symptoms come and go and vary all the time. Because it seems logical to assume that this is caused by something they are doing or not doing, they begin to search for clues about what makes symptoms more or less active. They begin to preface potential activities with the query, “Will this make my MS worse?” It usually takes a while for people to realize that MS fluctuates all the time, often unpredictably, despite what they do or don’t do.
When they first visit a neurologist they are usually prescribed, or at least encouraged to consider, a disease-modifying therapy. They inquire about other strategies to manage MS and ask, “What about diet? Does acupuncture help? What about yoga?” The typical answer is that the standard of care for MS is to use a disease-modifying therapy and that there is no evidence that any of these other interventions make any difference in the disease course.
Disease-modifying drugs are the standard treatment recommendation for multiple sclerosis. We have spent billions of dollars studying them and there is a lot of data is to support their use. But that’s not usually the case with other interventions like diet, vitamins, acupuncture and the like. That doesn’t mean these things don’t work—it means that we don’t know if they work. Some interventions have not been studied, some studies might have been poorly done or the results might be contradicted by other studies. Sometimes it is difficult to detect the benefit of an intervention because its impact is small and the benefit is hard to see unless it has been studied in a very large group. And, of course, some interventions work for some people but not for others. The bottom line is that there aren’t a lot of concrete recommendations about what, besides medications, might help a person live more effectively with MS. This issue of InforMS will look what we know about those other strategies and how they might make MS easier to manage.
OUR UNDERSTANDING ABOUT THE BRAIN AND MS
Thirty years ago we thought there were two types of MS—relapsingremitting (the good kind of MS) and chronic-progressive (the bad kind). Relapsing-remitting MS was characterized by a sudden burst of intense symptoms—a relapse—followed by a gradual recovery and then much longer period when there didn’t seem to be much MS at all (a remission). Although at first someone might have a complete recovery from a relapse, subsequent remissions might not be as complete or symptom-free. About half of those diagnosed with relapsingremitting MS disease would eventually develop progressively worse MS and have permanent symptoms. Why people had remissions wasn’t well understood, nor why they stopped having them and began to develop more progressive disease. People with primary-progressive MS didn’t have relapses—they just gradually developed symptoms that slowly worsened over time and they didn’t have remissions.
Different ideas were proposed to explain the differences. One was that MS affected people differently because some lesions didn’t affect important brain regions—they landed in a sort of vacant lot—and therefore didn’t cause as many problems. Another idea was that progressive disease was a fundamentally different process than relapsing disease and that MS was really two diseases. Thirty years ago a person diagnosed with it was most likely told to go home, take it easy, and hope they had the good kind of MS. They might be cautioned to avoid exercise and stress because these seemed to make MS symptoms worse for some people. There were no treatments that were proven to make MS better.
Thirty years ago it was commonly said (although probably not by the people who really knew) that humans only use 10 percent of their brains, a notion of uncertain origin that probably sprang from a misunderstanding of early brain research. Scientists had observed a poor correlation in humans between brain pathology (damage) and function and speculated that there were areas of the brain that didn’t seem to do much and if damage occurred in these places perhaps it didn’t matter. Although we knew that the childhood brain had an astonishing ability to modify itself and compensate for injury, we thought that flexibility faded away in late adolescence. We also thought the adult brain couldn’t produce new neurons and had only a limited capacity to recover from injuries.
CHANGING OUR MIND ABOUT CHANGING OUR BRAINS
What we understand about both the brain and MS has changed tremendously in the past 30 years. The development of the MRI technology in the 1980s and the research that poured out the 1990s initiative Decade of the Brain have broadened our understanding of the brain and how it works. It isn’t true that we only use ten percent of our brains—we use all of it. And it isn’t true that the adult brain can’t change—it changes all the time. We can sustain damage to a part of the brain but not lose functional ability because the brain is highly flexible and can reroute nerve impulses around damaged areas. How much capacity the brain has to absorb and mask the effects of an injury is a function of both brain and cognitive reserve.
BRAIN RESERVE AND COGNITIVE RESERVE
Brain reserve refers to innate characteristics such as brain size and neuron count. We are all born with different sized brains and different numbers of neurons, so one person may be more naturally resistant to injury than another. Cognitive reserve, which is developed during our lifetime, is more complex and probably more important. It refers to the efficiency with which people use existing brain circuits and to the ability to compensate for injury by developing new neuronal pathways. Cognitive reserve is a function of how we currently use and have used our brains over our lifetimes.
Neurons function in networks—a single neuron can be connected to hundreds of other neurons, rather like a massive, complex, tangled roadway system and the more connections it has, the better. The brain compensates for injury by re-routing nerve signals around the damaged areas. That requires the alternate routes present in that complex neuronal roadway system. How many roadways— alternate routes—we have and how efficiently we use them is a function of cognitive reserve. The more we have, the more likely it is that the brain will be able to absorb damage without a loss of function.
That the brain has these reserves— savings accounts—is important for several reasons. Some cells, such as skin cells and those that line the intestines have a short life span and are replaced by the body all the time, but that’s not true in the brain. Neurons, the brain cells that process and disseminate information, can live for a hundred years and while it isn’t true that we can never make new ones, it is true that they are not often or easily replaced. That’s why we are born with about 100 billion of them—because we need enough to last a lifetime
Many things can damage neurons directly—head injuries, diseases and exposure to toxins. And many things that strain the body also strain the brain— chronic diseases such as diabetes and heart disease, stress, and lack of sleep. But simply living day-to-day also extracts a toll and the longer we live, the more likely we are to accumulate “brain damage” and deplete our brain savings account.
Many of the problems associated with aging, such as a decline in mental acuity and physical robustness, stem directly or indirectly from the death of neurons and brain atrophy—or neurodegeneration. Most of the research now suggests that how well people function despite the loss of neurons is greatly influenced by the connections between the remaining neurons— cognitive reserve—and that is something we can affect and increase by what we do and how we live. There are a number of factors within our control—increased physical exercise, more social interactions, greater participation in leisure and intellectual activities—that help create cognitive reserve.
WHAT DOES COGNITIVE RESERVE HAVE TO DO WITH MS?
A hot debate raging among MS experts is whether progressive MS is fundamentally different than relapsingremitting MS. Many experts think the disease process is the same and what permits the recovery from a relapse is cognitive reserve. A “remission” happens following a relapse because the brain has rerouted function around areas of MS damage (lesions). But this is a brain-expensive process and the more it happens, the more it costs. Remissions become less robust and persistent symptoms (disability) start to accumulate when the brain runs out of reserves— when it uses up its savings—and can no longer compensate for the damage caused by the disease. Relapsing MS occurs if you are still able to compensate for damage. Progressive disease occurs because you have “spent” all your brain and no longer have the resources to mask the destruction caused by the disease.
Much of the early data on cognitive reserve came from research on Alzheimer’s disease, but in the past several years researchers have begun to look at the impact of cognitive reserve on MS and have found similar data. People with MS who have more cognitive reserve are more resistant to the development of cognitive problems and are also have more resilience to mobility impairments and overall disability as well.
MAKING THE BRAIN LAST LONGER
If you had a finite amount of money and you needed it to last for a long time you would probably try to spend less—by eliminating unnecessary expenses, and make more—by investing wisely. This same resource management strategy can be used to increase the resilience and staying power of the MS brain.
One obvious and critical strategy to reduce “brain spending” is to prevent damage from MS-related inflammation. Increasingly, the diseasemodifying MS medications are able to accomplish this goal. These medications have varying degrees of effectiveness, but they all help decrease the number of exacerbations and new lesions. They prevent brain damage.
A parallel cost-cutting strategy is to decrease the indirect brain expenses that are caused by other health issues such as poor diet or heart disease because people who have MS and other health problems (comorbid conditions) are more likely to develop progressive disease. A good diet, an exercise regimen, good sleep habits, and reigning in stress are critical to this process. Finally, to make the brain more flexible and resilient, it is necessary to adopt lifestyle strategies that help create more cognitive reserve.
FEEDING YOUR BRAIN
Research studies on lifestyle interventions such as diets are notoriously difficult to do. An enormous number of variables affect these processes and it’s impossible to identify and control all of them, so studies are often inconclusive and contradictory. Although people with MS have used various dietary approaches for years and researchers have studied them, there is no single MS diet that has been proven to change the disease course in MS.
One of the best known diets is the Swank diet, proposed about 60 years ago by Dr. Roy Swank, as a way to reduce MS symptoms and slow disease progression. Dr. Swank observed a higher prevalence of MS in regions that have high consumptions of fatty foods and hypothesized that fat fueled the inflammation that caused MS damage. So he developed a very low fat diet, recruited 25 people to try it, and reported that none of the 19 people who ultimately stayed on the diet had disease progression. He later repeated the study with a larger group and obtained similar results. Swank reported better outcomes for people who started the diet early in the disease course.
The problem with Dr. Swank’s diet is that no other researchers have been able to replicate his results, so his claims are unsubstantiated. The other problem with the Swank diet is that it is highly restrictive—one tablespoon of saturated fat and less than 3 tablespoons of polyunsaturated fat from all other sources, supplementation with cod liver oil, and no red meat for the first year—so many people find the diet too difficult to follow. The anecdotal reports are that people who have successfully followed the diet experience less MS progression.
Celiac disease is another autoimmune disease. When people who have it eat gluten, the immune system responds by attacking the small intestine and inhibiting the absorption of important nutrients. There have been a few studies over the years that suggest an increased incidence of celiac disease in people who have MS, and although there isn’t good evidence linking the two conditions, this possibility has spurred interest in glutenfree diets as an intervention for MS. People who do have celiac disease do better on a gluten-free diet, and although there is anecdotal evidence that some people with MS feel better on a glutenfree diet, there are no data to support that it impacts disease course.
According to doctors at Stanford University Medical School, inadequate diet and nutrition is a problem for many of us, whether we have MS or not. We eat too much of the wrong kinds of food, and as a result, three in five Americans are overweight or obese. And, in the last 20 years, the rate of adult obesity has doubled. Excess body weight has serious health consequences—people who are overweight have an increased incidence of all kinds of health problems including heart disease, Type 2 diabetes, stroke, sleep apnea, cancer, osteoarthritis and the list goes on. Chronic health problems strain the body and heart, and things that are bad for the heart are bad for the brain.
A diet that has been well studied and is good for the heart is the Mediterranean diet. Multiple studies haves shown that it reduces the risk of heart disease and decreases damage in the brain that secondary to aging, dementia, and vascular disease. It emphasizes daily consumption of fruits, vegetables, whole grains, beans, nuts, and olive oil; eating fish and seafood at least a couple of times a week; poultry, eggs, cheese, and yogurt in moderation; and sweets and red meat for special occasions only. Modest amounts of red wine are also allowed. Because it focuses on fruits and vegetables and limits processed foods and sweets, gradual weight loss usually occurs—most of us didn’t get overweight because we ate too many carrots.
Interestingly, the Mediterranean diet is not all that different than the Swank diet. It emphasizes the same foods, but it is less restrictive and probably easier to follow. Because many people with MS have low levels of vitamin D, and because there aren’t many good dietary sources of it—fatty fish and reindeer meat, primarily—many MS experts recommend that people take vitamin D supplements. Other dietary supplements that have been well researched and found to have health benefits are the omega 3 fatty acids—fish oils.
SLEEP: KNITTING UP THE RAVELED SLEEVE OF CARE
Shakespeare referred to sleep as the “balm of hurt minds, great nature’s second course, and the chief nourisher in life’s feast.” Although he was clearly a big fan of sleep, for most of us it is the first corner that gets cut when we have to cut corners. Unfortunately, doing so has a lot of health consequences.
When we don’t get enough sleep we upset the balance of hormones that help regulate appetite, energy metabolism, stress responses and insulin secretion. Epidemioloical studies report that adults who usually sleep less than five hours per night have a greatly increased risk of having or developing diabetes. Inadequate sleep also interfers with cardiovascular health, mood, learning and memory, decreases immune functioning and can impair judgement. Sleep deprivation was found to be a “significant factor” in the nuclear accidents at Three Mile Island and Chernobyl, and in the Exxon Valdez oil spill. Enough said.
Sleep disturbances are more common in MS than in other chronic illnesses and in the general poplulation as well. More than half of peole with MS complain of chronic sleep problems. Pain, spasticity, bladder problems, depression, medication side-effects, anxiety, and the disease itself can all contribute to problems sleeping. Lifestyle factors, such as diet or a lack of exercise, can also interfere with sleep.
It is important that you mention sleep problems to your doctor because these issues are frequently overlooked. Because a lot of factors contribute to sleep problems, finding a solution can be difficult. Occasionally the fix is easy, for example restricting caffine after 2 p.m., wearing ear plugs to block out noise, or getting more exercise. Sometimes medications are helpful. Establishing good sleep habits is a must. But sleep problems can be persistant and may require more aggressive assessment and intervention. For more on the importance of sleep, see Winter, 2017 issue of InforMS — Sleep.
STRESS
Stress has a bad reputation. Everyone thinks it’s bad for our health, but that’s not strictly true. Within certain parameters, it is good for us because it stretches the metabolism, stimulates cell functioning and makes things grow. But here’s the kicker: stress is only beneficial if the body has time to recover from it.
It’s chronic stress that causes the problems. Our stress response system is the physiological equivalent of 911 and we call on it when we are in trouble and need help fast. It floods the system with hormones—primarily cortisol and adrenaline—that alter metabolism and provide us with the metabolic resources to flee danger and get to safety. But then the stress response is supposed to shut off and allow our metabolism return to normal. The problem with chronic stress is that the “threat” doesn’t end, the system never gets to shut down, and this causes chronically elevated levels of stress hormones, especially cortisol.
Chronic stress is hard on our bodies. Elevated levels of cortisol are implicated in all sorts of health problems from altered thyroid function to heart disease. Chronic stress is also bad for the brain. It can alter our neurochemistry in ways that contribute to depression and can also interfere with the process of making new brain connections—that’s why we tend to forget the details when we are really stressed.
Some people with MS think that stress played a significant role in their diagnosis. Many people think stress is a signficant trigger for exacerbations. There have been lots of studies looking at the role of stress in MS exacerbations, and although there is nothing conclusive, the data are consistent with what we know about stress generally. It is the lower level persistant stresses, rather than the big acute brief ones, that are associated with increased risk of exacerbation.
Regardless of its role in MS, chronic stress is a significant brain expense and any thing that decreases it helps the bottom line. Exercise is an excellent stress reliever, especially aerobic exercise. Stress reduction techiques such as progressive relaxation are skills that have to be learned but can very helpful if done regularly. Meditation can also help reign in the stress response and has the added benefit of being potentially brain building. Because it requires concentration and focused attention, meditation can actually improve frontal lobe functioning. A couple of good nights’ sleep can be a tremendous stress reliever. Drinking more water and less coffee and alcohol might also be helpful. A good support system can also be a big help. In short, there are lots of lifestyle modifications, both big and little, that can reduce chronic stress.
When people are chronically stressed they are often too overwhelmed even to begin to focus on things they might do to improve their situation. Psychotherapy can help people identify, perhaps change, and certainly learn how to manage priorities. Depression and chronic stress overlap and can aggravate each other. Medications that help with depression can also take the edge off of stress.
THE DOUBLE WHAMMY: EXERCISE
It is probably news to no one that regular physical exercise is important for our general health. People who exercise regularly have better cardiovascular fitness, manage stress more successfully, are better able to regulate mood and fatigue, have more endurance and the list goes on. Exercise is good for the heart and it is also really good for brain.
Exercise improves the brain’s resilience because it increases blood flow and that brings the brain tissue more glucose and oxygen. It also makes the internal environment in the brain more hospitable to growth by releasing the neurotransmitters, hormones and nerve growth factors that encourage the growth of new fibers. This strengthens the connections between neurons, so exercise is also one of the simplest and most direct way to increase cognitive reserve.
People who exercise regularly are apparently better learners. Exercise directly influences learning by improving the brain’s ability to attend to and process new information. It does this by activating the frontal cortex—that part of the brain that controls executive functioning, attention, impulse control, and learning and memory.
The more you exercise the more you benefit, even if you have never exercised before. Doing an aerobic exercise program twice a week can improve mood, fitness and brain health. It will also reduce the risk of Alzheimer’s disease by 60 percent.
There was a time when people with MS were told not to exercise because of concerns that it might provoke relapses. Exercise, if at all strenuous, raises the core body temperature and this can make symptoms more evident, so some people don’t exercise because they are afraid it makes their MS worse. It doesn’t. A transient increase in symptoms, in response to as stressor like heat or fatigue, isn’t the same thing as an exacerbation. Most experts today recognize the many positive benefits of exercise and do recommend it for people with MS.
There is, however, some disagreement about what constitutes “exercise.” According to the Centers for Disease Control, the exercise recommendation for adults is 150 minutes of moderateintensity aerobic activity every week and musclestrengthening activities on two or more days. Less than half of the adult population probably achieves this. According to other experts, to get positive brain benefits “exercise doesn’t need to be stressful but it needs to be exercise.” Translation: going for a 30 minute walk can have positive brain effects, but wandering around the house for the same amount of time doesn’t count.
Because, for many reasons, 80 percent of people with MS don’t achieve the recommended levels of exercise, a recent study in the Multiple Sclerosis Journal suggested that we shift the focus from “exercise training for fitness” to “physical activity for health.” Translation: do what you can do, and occasionally try to do a bit more than you thought you could, but above all, keep moving. It all counts and it all helps.
In health, as in most aspects of life, it is what we do most of the time that counts, not what we do occasionally. A briefer and less strenous exercise regimen that you can do four times a week is probably more helpful than a longer, more intense one that you can only manage every other Saturday. Developing an appropriate exercise regimen that is tailored to your interests, abilities and needs is essential.
OTHER BRAIN INVESTMENT STRATEGIES: FRIENDS AND FUN
Nerve cells don’t survive in isolation and people don’t do so well either. Maintaining social connections and involvements also helps maintain neuronal connections and cognitive reserve. When we are stressed and worried, one of the first things to go from our lives can be fun. Participation in leisure activities, or having fun, especially in situations that provide social support and connection, also contributes to brain health. People who are more involved in community activies, pursue hobbies and recreational interests, attend the theater and read books, have friends and relationships, and find some pleasure and enjoyment in life are also better able to withstand the effects of aging.
Another way to increase cognitive reserve is to learn something. People who have higher levels of education and occupational achievement have more cognitive reserve, presumably because the reading and studying required for academic achievement provide a sort of regular workout for the brain. There are lots of other ways to give the brain a workout. What really stimulates the brain to learn and grow is more a function of how and how much you are challenged to learn, not what you learn.
There are a few caveats, however. Changing the brain—learning—requires effort. The brain is stable, so if we want to change it, we have to push it. It is very difficult to learn anything if we aren’t paying attention, so anything that interferes with attention will also interfere with learning. To really master something we need to practice. Learning is about strengthening neuronal connections. To learn something new can be difficult because we have to forge new connections. It’s a bit like breaking a trail. It’s most difficult for the leader, but the more we use the path, the easier it becomes to use. Practice helps us integrate the information we have learned.
The brain loves novelty and to learn something new. Doing more of what we already know will make us better at doing what we already do, but it won’t make us better at anything else or anything new. The part of our brain that we use when we are trying to learn a new skill is different than the part we use when we have acquired a skill.
CONCLUSION
There are many things you can do, in addition to using medication, to help your brain, body and psyche manage MS over the long haul. However, it might seem a bit overwhelming to think about all the things you could do, when you can hardly manage the things you must do, and you may be thinking, “I have MS and I am already tired and I barely have time to floss. And now you want me to add six more things to the list? Go away.”
The interesting thing about all these different wellness strategies is that they don’t function in isolation. They overlap, augment and support eachother. So you don’t have six more things to do. You could start with one.
Improving your diet and losing a little weight might give you more energy so you might feel like exercising more, which might decrease your stress a tad, and that could improve your sleep. Attending a yoga class could increase your social connections, relieve stress, teach you something new, and stretch your muscles. Start where you can start and let it be with something you want to do. Wherever you start, it will take you somewhere. The important thing is to start.
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