GPS For Your MS: Initiating Your Wellness Journey
Following the diagnosis of MS and during periods of change in your MS, it is not unusual to feel your personal GPS becoming "out of whack" and not working as well as it had in the past - or not as well as you were hoping it would. This is true whether you are the person with MS or someone who cares about you. You may feel lost, without direction, and overwhelmed with multiple choices and decisions. You may feel that little is under your control. On the other hand, MS often becomes the motivation - the “kick in the butt” so to speak - that people have needed to pursue effective wellness and healthy lifestyle strategies.
The New Year is a great time to reflect and set goals for the future. If you have MS, it is also a great opportunity to reflect upon what you did well and what you can improve upon next year. When setting your health goals, it is important to not only focus on your MS-related medical care, but on your overall wellness. Wellness encompasses your overall health, emotional well-being, diet, physical activity, spirituality, and relationships. All of these components of wellness are interrelated, and often times making one small change can spark a chain reaction that will improve your overall quality of life.
We are going to explore several aspects of wellness, and provide you with information you need to set personal goals. When making these changes, we recommend that you set SMART goals that are specific, measurable, attainable, relevant, and time-based to increase your chances of success. When you initiate this wellness journey, you are displaying resiliency and the capacity to rebound from adversity - major ingredients for effective coping with MS and life in general.
Sometimes, we spend so much time and energy on our MS-related care that we forget about the basics. Preventative and primary care are essential components of our overall health and wellness. By setting a few health maintenance goals, people living with MS can lead better lives and improve their overall health.
A neurologist is focused on one aspect of your health, but a general primary care or internal medicine doctor will look at the entire picture. Getting yearly physicals and screening for health issues like high blood pressure and cholesterol, diabetes, and cancer will help to prevent other chronic health conditions. We know that people living with MS have a higher likelihood of developing comorbidities (multiple chronic health issues). These comorbidities can worsen MS, increase medical expenses, and lead to a lower quality of life. Many comorbidities, such as heart disease, diabetes, and obesity, are preventable through lifestyle changes, regular visits to a good primary care provider, and completing essential yearly physicals and health screenings.
Tobacco use is also an important component of your overall health. We know that smokers are at a higher risk for developing MS. Smoking can also accelerate disease progression, which may lead to greater disabilities. In addition to this acceleration, we also know that regular tobacco use can create antibodies (or resistance) to certain disease modifying therapies and interfere with the effectiveness of MS treatment. The good news is quitting can slow the progression of MS and significantly lower your risk for heart disease, cancer, and other comorbidities.
Alcohol is not necessarily contraindicated if you have MS, and it does not interact with disease modifying drugs. However, it does interact with several other types of medications, including ones used to control pain and spasticity. It is always a good idea to ask your doctor about potential side effects from alcohol use.
Many people with MS are also interested in using cannabis, especially with more and more states legalizing medical and recreational marijuana use. There have been studies that show it is useful for pain and may improve quality of life. However, smoking marijuana can have many of the same long term consequences as smoking cigarettes. Intoxication from alcohol, marijuana, or other substances does cause temporary issues with coordination, balance, cognition, and bladder function. So, if these are symptoms you already struggle with, you may want to abstain. Additionally, we know that moderation is key. Regular consumption of intoxicating substances can worsen depression, spasticity, fatigue, and cognition.
Diet & Exercise
Improved diet and regular exercise are popular wellness goals…and for good reasons! This aspect of wellness is one that can significantly impact MS disease progression and symptom control. We know that maintaining a healthy weight lowers your risk for morbidities such as diabetes and heart disease, and that obesity can worsen MS. Everyone with MS can use diet and exercise to improve their health and quality of life. Moreover, goals and strategies can be tailored to every level of ability.
Research into specific diets for MS management is currently being done, but for now there is no proven “MS diet.” Many people with MS have experienced good results from the Paleo diet, Whals Protocol, and Swank diet. In general, neurologists encourage people who are curious about a certain diet to try it for a month and then see how they feel. Following a specific diet can be expensive and difficult to maintain, so it is important to find something that works for your lifestyle. For more in depth information on dietary recommendations, please read this article by renowned neurologist Dr. Pavan Bhargava.
Staying well hydrated is also important for your overall health. Many people with MS limit their water consumption due to bladder dysfunction, but doing so can actually worsen symptoms and lead to urinary tract infections. Instead of limiting how much water you drink, try just having water with meals (instead of sipping throughout the day), or substitute soda, coffee, and tea during the day with a glass of water.
In addition to monitoring food and beverage intake, many people are interested in adding vitamins and other supplements into their wellness regimen. Every supplement is different and can have varying effects. For recommendations on Vitamin D, B12 and other supplements, you can consult the National MS Society’s information here.
Getting regular exercise, along with maintaining a nutritious diet, can help lower your risk for other diseases and for MS progression, and can improve several symptoms of MS. There is an exercise routine that can be tailored to every level of physical ability and every individual’s needs. In general, getting 30 minutes of aerobic exercise (activity that gets your heart rate up such as walking, biking, running, or swimming) twice a week and 30 minutes of strength training (lifting weights, using resistance bands, or yoga) twice a week is optimal.
If you aren’t sure where to start, work with your doctor to set fitness goals. Then, consult a physical therapist or trained professional to develop strategies to accomplish these goals. Many people with MS who are heat sensitive like yoga, tai chi, swimming, and/or water aerobics. There are also a lot of cooling products like vests and neck wraps that will help keep your core temperature down. It is also especially important to stay well hydrated before, during, and after exercise. For a more in depth look at exercise and MS, check out this webinar from Can Do MS.
Sleep is important when you have MS, but there are many barriers to getting a good night’s rest. We know that people with MS are more likely to have a sleep disorder then the general population. Adding sleep medication can impact MS symptoms and mood issues. If you frequently struggle with fatigue or have difficulty falling or staying asleep, we encourage you to view this article and webinar from Can Do MS.
There are multiple components to emotional well-being, including stress management, coping, and mood.
One useful approach to managing stress more effectively is to separate your stressors into two lists—those you can control (your behavior will likely be on this list) and those you can’t (usually the longer list). Then focus on the stressors that occur more frequently because this will provide you with more opportunities for practice. What seems to work best is a combination of several approaches, including problem-solving (identifying the real problem, generating and implementing possible solutions followed by re-evaluation), regular practice of relaxation and mindfulness strategies, improved communication, and reducing your exposure to the stressor, if possible.
All of us (people with MS and partners) have moods. Understanding mood can be even more complicated in MS where there are multiple contributing factors, including the MS itself, side effects of medications, and changes in life circumstances. It is important to know that mood changes, including depression and anxiety are very common in life with MS and can have significant effects. When people are depressed, anxious, and moody, they have difficulty taking care of themselves and others, may lose time from work, become difficult to live with, engage in unhealthy behaviors, and be at higher risk of self-harm. For all these reasons, it is important to acknowledge these changes to yourself and others as the first step to accessing treatment. Regardless of the cause, depression responds well to treatment. Psychotherapy plus antidepressant medication is the treatment of choice.
Relationships and communication
It is difficult to have healthy relationships if your communication is not effective. Effective communication includes accurate and shared information that provides a “common language” (this is particularly true in MS). Other critical communication skills include active listening and speaking, checking out assumptions rather than mind reading, demonstration of engagement via eye contact and asking questions, paying close attention to tone and body language, and clarifying the meaning of emotions. Just as in the case of stress management, good communication takes practice. Sometimes even people who are motivated to communicate more effectively have barriers that can get in the way. For example, people may not have information or developed a common language. For many, communication is not a priority because other things require our time and attention. In addition, people can have different coping and communication styles that don’t seem to fit together well. For example in MS, some people want to know everything and plan for the future, while others prefer to avoid information and looking ahead, sometimes in anticipation of the worst. It is important to respectfully acknowledge these differences and come up with a plan that takes into consideration the comfort zone of both people. It can be helpful to schedule a weekly time to talk in a quiet place for a specific amount of time and with a reasonable agenda as a start.
As previously noted, a positive change in one area of wellness will likely have a positive effect on another area because the components are so closely related. For example, if you reduce and more effectively manage stress, your mood will likely improve and you will be able to communicate more effectively with the important people in your life. Investing in wellness can pay big dividends in many areas of your life.
Although this might be hard to believe, many people with MS and their partners who work on SMART wellness goals become healthier than they were before MS became part of their lives. In the process of identifying your wellness goals and how you can work on them, please take advantage of the following resources:
This discussion guide for people with MS and their healthcare provider includes a goal-setting section for each topic.
The start of a New Year is a great opportunity to reexamine the directions you and your support partner are taking to thrive in your lives with multiple sclerosis. Just like a road trip requires diligent planning and routing, you can best succeed in your journey with MS by “mapping out” a comprehensive wellness plan with the help of your health care team. Stephanie Buxhoeveden, nurse practitioner, and Peggy Crawford, psychologist, will lead an exciting multi-disciplinary discussion on tools and techniques to help you grow, while answering your questions in our live Q&A forum.